Differences

>> Thursday, December 9, 2010

I have been lax about posting on Bug's blog lately. He was doing well and then we wasn't, he had no seizures and then he had 3 in one day including a drop that immediately made me think he was back in Status. And then he had the night before last. It was ickie.

He came home from school and I pulled out that dreaded yellow paper. It's an incident paper. His Teacher had called to tell me had a seizure before getting on the bus. Bummer. His bus ride was uneventful and then an hour or so after he came home he had a another. Damn I thought. That night, he had some intestinal wonderment that woke him up three times in an hour and half. I changed his diapers and he went right back to sleep and then proceeded to have two more seizures. It occurred to me that he didn't seize more when he was constipated, which is common with a lot of seizure kids, but he seized more when he had diarrhea...maybe he has a bad allergy to something. We are determined to do a modified Atkins for Bug. Not a Keto...but carb light, fat heavy, protein laden.

What prompted me to write was something that happened before this ickness.

Papa, they think, had a Transient Global Amnesia event. I think he may have had a variation of that or a seizure but it was NOT a textbook case. They don't believe us. But before Papa 'got sleepy' we had been enjoying our breakfast at IHOP. Our waiter was fabulous and funny. Two things that guaranteed a big tip, and as it turned out has had Epilepsy since he was a young lad. 11 I think he said.

We made small talk about Epilepsy and about how Bug is doing, he told us about how he lives his life like everyone else and stopped taking him meds because they effect him more than the seizures do. I respect that. He doesn't drive, because that would be selfish and irresponsible and he ended with this:

Make sure to give him plenty of love and support when the other children make fun of him, and they will. I went through hell and I just want you to be prepared.

Bless him. Bless him a lot. I wanted to hug him, and I might have but Papa was asleep. For no reason. And Nana had difficulty waking him up. He answered my questions, but inappropriately and then tried to go back to sleep. I gathered everyone up and said: We are going to the Hospital. My first thought was: Stroke.

I live with death everyday. I do not accept it but I tolerate it. Bug has a higher than average chance of SUDEP, so I learn to keep my eyes and ears open for any change that can signal something big. I am used to it...with Bug. Not with Dad.

People are all different. Different is not bad, it just is...well...different. I saw this in spades this last weekend. Bug is different in a lot of ways and people accept that because he is easy to love. Dad was being treated as if he WAS NOT different. They wanted to lump him into a category immediately. I had to repeat what had happened no less than 4 times because THEY kept changing it. I won and Dad got what he needed, but I shouldn't have had to reiterate so many times. They should look at the symptoms, of course, but they HAVE to add in the differences of the person. THAT is what is wrong with medical professionals.

They see only what is constant and ignore it if it is out of type, they do not see the person.

Different is not good, or bad, and it's those differences that make us wonderful and varied and able to accomplish great things. Our differences keep us finding and reaching for more and farther than before. If we embrace it.

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December 3rd, 2010

>> Friday, December 3, 2010

Wow, a long time.

Bug has been doing well. He has had a few events and ALL when he was asleep. Yesterday was the worst...he had two seizures while he napped. But when he woke, he was energetic and happy and when he went to bed, he didn't have any. In fact, in the last 10 days, his seizures have only been during daytime naps. He has been ill too. Poor kiddo. I hate when he is sick, he is just silently miserable and it breaks my heart. He is doing better today and so went to school.

Yesterday, I got a call from his teacher. Katherine was checking on him and then passed the phone to Susan. Susan told me that Bug has been chosen to participate in the Shop With a Cop program. He gets to have breakfast with a police officer and then has 100 bucks to spend on gifts for people. After he picks the gifts and they are paid for, they will help him wrap them. Now, I know he will not be too interested in this, he just doesn't understand the magnitude. But, I will go with him and we will have fun. His police officer will NOT know what to do. The kid is adorable and doesn't say a word, he is lovable and doesn't really care about people. It will be a new adventure for all of us and I am as excited as I can be. Lot's a picture will be taken...and hopefully some of them will look good. :)

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November 9, 2010

>> Tuesday, November 9, 2010

I pulled out the infamous yellow form from Bug's backpack this morning. And it appears it wasn't an Absence seizure but an actual Tonic. It read that it was less than 30 seconds and he was rigid. Sounds like a Tonic Seizure to me.

And now I am worried that he is back in Status.

Other Mom's worry about their kids being sick, having a cough, a runny nose. These things are minor to me. Do they have the potential to be serious? Yes, will they usually be serious? No. The ick will run it's course and the child will be skipping and watching TV soon enough, maybe eating books again in a few days. But with Bug, he seizes during the day and I worry that he is in Status again. That his brain is misfiring A LOT, and that can be severely damaging.

What I need is an at home EEG monitor. And medication. For him AND me.

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November 8, 2010

>> Monday, November 8, 2010

One T/C last night and one Absence today while I was visiting the school. He is getting sick or is sick and fighting it off, so he is VERY tired. The Absence doesn't surprise me because he can barely keep his eyes open when things are calm. The little man impresses me...as much as he frustrates me. Love him to pieces.

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Sunday, November 7, 2010

>> Sunday, November 7, 2010

Been a good couple of days for the little monkey boy. He DID have an Absence Seizure while at the Artilpesy Opening Friday night but he was tired and a little passed his medication schedule (I gave it to him an hour before). But other than that he has been sleeping and playing peacefully.

We SHOULD be getting an appointment with the Head of Pediatric Neurology at Primary Children's Hospital. Glenn and I listened to his presentation at the EAU Conference and were very impressed. I don't say that lightly, but we were. I turned to Glenn mid-presentation and told him: I'll get an appointment Monday. Turns out, after talking with the Doc that we were supposed to meet with him Friday but no one called to confirm so we didn't know. He said he would get someone to get us in ASAP. I was stunned. He was a VERY nice man. Still...a Doctor so I have my suspicions. I can say that...people hate Tech Support people even though they are calling THEM for help. Same thing, different letter's after the name.

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day just got worse

>> Tuesday, November 2, 2010

It happens. People with Epilepsy suddenly just die. No known reason. Something just shuts off and does not come back on. It's tough to hear. It's even worse to live with. And I DO live with it. We DO face the fact that every night he might not wake up. Every damn day. Every day I listen to him breathe and wait for him to hold his breath. Several times a night I wake up and feel his chest. Glenn does it too. It's our routine.

Today it's not a routine. Today is a very hard day for me. I have read about two people today that died suddenly. They had seizures. Today I am paralyzed with sorrow and fear. I do not get this way often. But I see all these people talking about what they are doing for The Holidays and 'Be sure to vote, it's important!" and I just want to scream: My boy could be dying! I don't give a shit where you spend the holidays, I don't care if you spend it with my boy if you don't. And I don't care that you voted against your party. I just don't.

I want to take my boy to Disney World and I want to spin him on rides until he can't spin anymore. I want to let him jump on a trampoline and ride a bike. And I want to see him grow into a man. And there are no Christmas Trees or any Politician that will change that for me, for us. I want him to be happy, which he is, and I want him to be happy for decades to come, which he probably will be, and I want him to find a girlfriend and fall in love. That's a crap shoot. And why is it? I don't know. It just is. How about living with THAT?

I am sorry if you don't want to think about it. I am sorry if you don't want to see Bug, for what could be the last time, and I am sorry that I am a downer but I deserve it. I really do. There is a quiet stress that I live with and sometimes I am not quiet about it, but, by god, I do a fine job of not dragging everyone I know into my misery when I am miserable. But today...today...I am miserable and leave me alone. VERY alone. I need to cry until I am done crying and not a moment before. Not that it matters. I don't think I have ever had ANYONE to cry with. Life is ugly and most people don't have the guts to let the ugly be what it is. They ignore it. Well, I am ugly today because life has a way of making even the most positive person, lose it every so often. Yep, I am ugly with grief that, hopefully, will never be realized in this house. Not if I can help it. But first, I will be done with my cry.

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Dang

He might have had two last night. MIGHT have. He moaned for a few seconds the first time but by the time I crawled over there he was back asleep. The second one was definitely a seizure.

I swear that it wasn't a coincidence that he went so long with no seizures...I KNOW that his Doctors are missing something. Missing because they are treating the SYMPTOMS, which are the seizures and NOT looking for a CAUSE.

I have learned that when your computer screen goes completely black, it might NOT be a bad screen. It could be a bad power connector, it could be a bad driver, it could be a conflict with another device, but you should at least try to figure out if the whole screen is broken or not before you stop searching for the cause and throw it out. It's a simple analogy but it works.

If Doctors looked at the person really and truly as a whole and didn't get bogged down by one or two of the self reported symptoms then they would be better troubleshooters. And that actually is all they are, but most of them suck at it if it's not cut and dry.

With Bug, his Doc hasn't even tried really. *I* have. *I* gave him the list of meds I wanted to try, *I* got him into Genetics before the 12 month wait, *I* got him hearing, actually hearing well again by NOT listening to his Neuro and calling an ENT. All those things, his Doctor was NOT going to do. When Bug's first set of Genetics came back with normal anomalies, his Doctor REFUSED to do anymore. So, no Dravet, no West's, no Angelman's(which would be a shock since he has almost no symptoms of that one) no Rhett. NOTHING else. Lazy, arrogant, bastard.

Where's my coke?

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Spoke too soon

>> Monday, November 1, 2010

Bug came home from school exhausted, so he took a nap. About 20 minutes in, he had a seizure. Damn, damn, damn. Still not a bad run and a far cry better than 6 or 20 a day.

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Must have been..

A good sleepy period. In 9 days he has only had ONE...1...that's ONE seizure. PLEASE let this be a sign of things to come.

Dare I hope?

Yes. I do.

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It's somethin'

>> Tuesday, October 26, 2010

In four days he only had ONE seizure. And it was during a nap at 5pm.

Bug has been sleepy the last 24 hours. REALLY sleepy. Generally speaking this usually means he is undergoing a brain development of some sort and a seizure type change follows.

But this time it's really odd. He seems depressed and then he will sort of jerk and then immediately smile and hug me. He isn't very energetic but that's to be expected since he has slept 16 or the last 24 hours. I am debating taking him to school. In fact, I think he will stay home today. Yeah, that's a good choice for him, he is rubbing his head and plugging his ears off and on so I think he is staying home.

Unless he perks up. Then I won't hesitate driving taking him in.

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October 19, 2010

>> Tuesday, October 19, 2010

Whew.

Been a busy few weeks.

Bug is still having seizures at night, mostly when he first goes to sleep and then right before he wakes up. But it's been over a week since he had more than 3 T/C in one night. And he wakes up happy and energetic, despite his cold(s).

Poor kid has had several colds in the last 3 weeks, one right after another. We all have. Annoying but not serious. I hope.

He is making some progress in school as well. They say he is responding to prompts for colors and days of the weeks, as well as the month of the year. Can't wait to see if it's a coincidence or not, but he is doing better with making less mess too.

Fingers crossed.

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What has come to pass.

>> Thursday, September 30, 2010

The last little while has seen an increase in sleeping seizures but no daytime events. Still, it's very disheartening.

He is, however, having the time of his young life. He is gabbering away at us morning and night. He is saying MaMa! And only to me! Very thrilling. So we know that even though he is having multiple (sometimes) events at night they are not really effecting him like they used to. Or so we hope.

We had his IEP yesterday and increased his Speech Therapy.

He had his post op follow up with Dr, Munz and Munz got to hear him say BaBa. He said it was very encouraging that he was trying to talk already and that we should continue to get him increased therapy to help him along. He said he was very pleased with his development.

I almost fell off the chair! He didn't say: In spite of his 'bad brain' (thank you PCMC for THAT little nugget of a saying, gonna store that one in the forefront and throw it out every time Bug says a new word).

It's been a bad summer. Very bad and I just want it to go away. Hopefully, he will be talking more and more and at Christmas he might even enjoy opening presents again. Fingers crossed, but no breath held.

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September 17, 2010

>> Friday, September 17, 2010

2 events. Both Tonic/Clonic.

One was after he had been asleep about an hour and the second was about an hour before he was up for the day.

Important to note: He has NOT had ANY daytime events since his hospital stay. He recovers from his nighttime seizures quickly and starts to 'talk' to me within a few minutes. I get: Momma, Mom, Ma and a smile.

He is home today, no fever but nose is running like crazy. Not even gonna talk about sneezing. Ew.

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September 16, 2010

What a night.

The lad is sick so he had possibly 6 seizures. 2 were Tonic/Clonic and the others were startled awake moments but not rigid. Still, it sucked.

He went to school since he did not have a fever and his nose was running clear. They called a few hours later and made me feel like I sent him to school really sick. He had a low-grade fever and they claimed his nasal discharge had color. I told them: Not when I put him on the Van. There was so more conversation that I ignored and I took the boy home with me. He started to fall asleep in the car but woke up with a vengeance once we had food in front of him.

He was pretty easy to please and made only a small mess later.

Good thing he is cute.

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September 15, 2010

>> Wednesday, September 15, 2010

One minor event.

And he is sick so maybe that is it. Let's hope. It was so small, I would have missed it had I not been holding his hand. Lasted less than 10 seconds and he went right back to sleep.

Even though he has a runny nose and a small cough he is full of energy and gabbing like crazy. He will not leave my face alone and he is slapping a lot too. Which is gross when he is so snotty. Ick.

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September 14, 2010

>> Tuesday, September 14, 2010

No events.

The last two night...no events. They happen to be nights he was taking Lamictal in the evening. It seems that after two days of taking him off the evening Lamictal he will seize and within two days of putting him back on it...he stops. As I said before, but apparently wasn't worth listening to the first 4 times, the Depakote does nothing but make him hyper, the Lamictal is wonderful.

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September 12, 2010

>> Sunday, September 12, 2010

2 events.

Usually it takes at least two days for the Lamictal to reach a high enough level to help and both seizures where after a long restful night of sleep. But he was still asleep.

So far, he has had no daytime seizures since his stay in the hospital. If he has, they were absence only and nothing too major.

Now to get these night time things under control....

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September 11, 2010

>> Saturday, September 11, 2010

3 events. All tonic, decreasing in severity.

We will be adding the nightly Lamictal back to his routine. Last time, it took two days to see a difference so the next few nights might be a nail biter for me.

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September 10, 2010

>> Friday, September 10, 2010

2 maybe 3 events.

I saw two and may have missed one. I did NOT give him his Lamictal like the Doctor wanted and every time I don't, he has seizures at night. UGH. I need to call and ask them if we will be upping his Klonopin and discontinuing the Depakote bringing back the Lamictal.

Gonna need luck on this one.

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September 8, 2010

>> Wednesday, September 8, 2010

No events.

When he came home from school he was incredibly slappy. My kidney's were his favorite target and because of that I am extremely sore at the moment. He doesn't slap because he is angry only, he slaps when he is happy or excited and he was excited to be home. And while I was initially excited about him being home, getting slapped in the lower back multiple times will make anyone less than thrilled.

One might think it's a simple matter of teaching him not to slap. When they child does not speak...how do you accomplish that? We grab his hands and tell him no...tell him to be soft and gentle but when the moment takes him....he forgets and I get slapped. No one remembers this from when he was on the Depakote before, this time I have this Blog and Tay as a witness. So there.

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September 7, 2010

>> Tuesday, September 7, 2010

No events.

Boy was he a handful.

After the great vomit-a-loosa he started out slow and then was ravenous...we had to slow him down. Not as easy as it sounds.

He is now building things to get into cupboards, also climbing all sorts of things for all sorts of reasons. He seems to just be more 'there' than he ever was before. He is playing more creatively and was NOT as interested in Doodle Pro's as he usually is. It's been interesting to watch him, but horrible to contain him.

He still can not understand what certain words mean...he gets No and Stop but only bits and pieces of more complex sentences. And he still has NO impulse control...well...maybe a little because he isn't as all over the place as he has been.

It's slow going...but we are seeing little things that encourage us.

Of course, I still do not dare to hope. At all. I will just take it as it comes.

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Some nights...aren't.

>> Sunday, September 5, 2010

We had eaten Falafel in Pita's for dinner and they were very good. We used a mix for the Falafel and everything else was made by us. Pita included. Bug had three.

Throughout most of the day, Bug had been eating ravenously. I bought him a big bag of chips to keep him snacking so he wouldn't eat off the floor, ground, shelves, shoes, etc...

It came back to haunt me.

I took Megan home and when I returned, at about 11:00pm, Bug's bed was stripped, he was stripped and sleeping, the washer was running and Glenn was playing on his iPod.

I said: Uh oh, Did Bug puke?

Glenn said: Yep, a lot. And I mean a LOT. Not just the Falafel...did he have noodles?

And he continued to puke throughout the night. At about 3AM, 3:22 to be precise, we gave him a Phenergan we had left over from something a few months back, and he puked two more times before going to sleep. At about 5AM I woke up because I thought he was having difficulty and I smelled something foul. With the amount of gas in room (Falafel will do that) I blew it off.

At 6:45 I woke up and the smell was still there and Bug began to heave again. So I helped him and realized he was poopy. Not just a little. And he had pooped while he was on his stomach. It was THE worst diaper I have ever seen. We surmise that, because he did poop bucketloads, his Phenergan was not entirely successful. We will give him a few hours to wake up from the medicine that did get into him and then take him to the Doctor.

Through all of that, he had one seizure. He also had one in the car while we were running around, he was asleep when he did so maybe he is back to sleep-dependent seizures.

The REALLY bad part about last night, isn't that the internal washer drain is clogged so we had to put all the dirty linens/clothes/pillows into the bathtub, it's bad enough that he is miserable, but he was miserable at intervals that allowed for Glenn and I to get into deep sleep before we were jolted awake. I haven't been this drained since he was a baby and waking up every hour. I am sure after we take him to the Doctor, we can take naps. Most stomach meds make him sleep so we might all get relief soon.

However, I think our room will NEVER smell right again. But at least it will get cleaned within an inch of tearing it down. That has to be good, right?

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September 1, 2010

>> Wednesday, September 1, 2010

3 events.

And I am completely bummed. He isn't.

He is happy and eating (a little) and just being a little energetic, OK a lot energetic.

I just do not think the Depakote is helping him AT ALL, in fact, if it is making him hyper, couldn't it be making the seizures worse? Today will be best spent NOT thinking about it, just chilling and praying for the best.

He needs a helmet, he needs an Emfit, he needs programmable push buttons and other communication aides, and I can not buy them right now. Completely feeling like a horrible Mommy. :(

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August 31, 2010

>> Tuesday, August 31, 2010

One event.

It was a Tonic Seizure. He screamed and that's how we knew.

I thought outloud: I guess the Zonegran makes a difference.

Glenn responded: Or it's the Melatonin I gave him.

So, we will have to wait and see which it was, hopefully he won't go back to nightly seizures, the last 10 days have been pretty great.

I'll just wait for the other shoe to drop.

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August 26, 2010

>> Thursday, August 26, 2010

No events.

Got a note from his teacher that Bug was slapping the assistant who was trying to get him to sit at the table. THIS bothers me to no end. THIS is why I hated Depakote. If someone can tell me that it is helping him neurologically then I will leave him on it and we will all learn to deal with it. But, damn, it bothers me more than almost anything. :(

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August 25, 2010

>> Wednesday, August 25, 2010

No events.

I took him to school yesterday, after we picked up Megan, and he remembered everything about it. He walked to his classroom and immediately beelined for the toy cabinet. :) He really likes school and it was apparent with how much he smiled.

He was very Mommy oriented again, however, Megan received some of the aggressive attention. Made me smile.

He did not want to sleep last night, so I let him get really tired and put him to bed at 10:00pm. We had to wake him at 8:30 to make the van to school. It's pretty darn cool that they have a private transportation company that picks him up and drops him off. I was concerned about the lack of air conditioning on the buses and him not sweating. A little guy could overheat quickly if his body does nothing to cool him off. But, private van = problem solved.

He seemed to remember the van and headed right for his seat. It's great to see that. And even better to know that he CAN hear and now it's just a matter of teaching him words. He really is a 12 month old, with mad spinning skills.

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August 24, 2010

>> Tuesday, August 24, 2010

No events.

His energy level today was off the charts. It wasn't destructive, well, any more so than the normal food flinging, just very Mommy oriented.

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August 23, 2010

>> Monday, August 23, 2010

One event.

And I am bummed out about it. Glenn said it wasn't a big deal at all. He went tonic and then woke up and sat up. Less than 5 seconds.

This morning he ate well and is trying to sit on me a lot. Tay was attempting to help me and he began to hit her. He is not tolerating refusal at the moment. Typical of when he is on Depakote.

In fact, he just slapped the hell out of her...I wanted to stop him but she deserved it and I was giggling too hard, besides and I like to see him defending himself. And well, it's more like Big Brother, Little Sister to me. She deserves to be slapped..he slapped her.

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August 22, 2010

>> Sunday, August 22, 2010

No events.

He has so much energy and is babbling more but it's hard to know if it's the Depakote or the Klonopin. I wish they would have done one a time instead of jumping into two. Still, it's a nice change from multiples a day. I'll take it.

Although my chin hurts from him grabbing it.

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The update FB wouldn't let me post.

>> Saturday, August 14, 2010

Update on Bug. He is still seizing on the Pheno (although a lot less) and his EEG shows a little improvement (with moments of healthy looking waves) but not what they would like to see on a consistent level.  He will be getting another 10 of Pheno this afternoon and may be released home with a prescription for it. We will up his Lamictal and Keppra as well. He will be going on the Ketogenic diet too, also sacrificing chickens, using voodoo dolls and probably drinking the blood of a male platypus. 

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August 12, 2010

>> Thursday, August 12, 2010

3 events.

2 large T/C and one Tonic. The first one last night was bad. It lasted almost 3 minutes and took him over an hour to recover. I gave him his meds and he slept next to me all night somewhat peacefully. My mistake was letting Tay sleep next to him. All night I was throwing her legs off of us and making her turn back around so she wasn't kicking him in the head. Bug and I slept in 1/3 of the bed and Tay took the other 2/3. It was ugly.

Just as the sun came up he had the 2nd T/C, not as long as the first but still as intense. An hour later her had the tonic that lasted less than a minute. He woke up enough for me to give him his morning meds and I realized he was congested. Breathing through his mouth, I though the pressure could be causing problems so I also gave him Ibuprofen. He is perky now and playing and smiling. It's good to see.

Last night, all he wanted to do was lay on me, occasionally he would play a little but he always came back to me to cuddle. I should have known by that he wasn't feeling well but...It passed me by.

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Lost in ourselves

>> Wednesday, August 11, 2010

The last few weeks have been so insanely busy that I have been lax on a few things. Caught up in all the to-do's I had to do and none of the wants. One of those wants was catching up on the blogs I have been following. I went back today to go through them and found that I missed something pivotal and horrible.

I don't know the family, not at all, I read the blog because it's just one of those things that Mom's with kiddos that need special attention do to feel connected. Because there is an amazing chasm in the life of a Special Needs Mom. All those 'normal' things that kids do, even if she has another child with no challenges, become unsurmountable spaces of time limiting living. Reminders that your child is different. We have been trained to think different is bad, when in actuality, different is just different.

So, I read her blog, her blog about her daughter. And on July 25, 2010 their little girl breathed for the last time. I am devastated for them, and they will never know. I will cry on and off all day, for them and for me. It scares me to think i could ever write a post like that...but I have dreamed about it. Those nightmares where he is just no longer here. Her death, brought it back home.

I am so sorry for your loss, I have no words only respect.

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August 11, 2010

No events.

Although he woke up scared because he pulled the covers over his head and couldn't get them off. It was kinda amusing. Does that make me cruel? I comforted him and he went right back to sleep.

When he woke up he climbed in bed next to me and he fell back asleep for another hour. He is the best cuddle Bug. :)

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August 10, 2010

>> Tuesday, August 10, 2010

No events.

Which is a surprise since he is amazingly full of energy.

He is branching out on his own more and more. He is playing in his room with HIS toys, which is totally cool. But, man the house is a mess. He (and his sister) grab things and just drag them into another room, leaving it there for me to be mortified (and sometime angry) about.

He is back to turning on ALL the lights in the house. He did that when he was 3...wow it got expensive in CA. Utah? Not so bad but still...argh.

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The Week

>> Monday, August 9, 2010

Bug had a decent week. He had a few seizures here and there but a far cry better than 5 in the middle of the day.

He was restless a few nights ago, so restless in fact that we had to medicate him to get him to sleep. About 15 minutes are sleep he had one seizure and then the rest of the night was uneventful.

Now, we have used this medication before, and before any indignant Mom's start in let me explain: Seizures are worse when the person is too tired, or exhausted so sleep deprivation isn't just annoying it's life-threatening. He has had this medication in the past which mixed success...it will work one night and then not work the other night. In the last 2 years we haven't had to use it much but he recovers from it just peachy. So, when he slept off and on all day the day after, I wondered what had happened. Sometimes, if he has a seizure and he seemingly fights it off, he will be sleepy or in a funk until he has another. So maybe that was it, or maybe something is changing again. Either way, it was a worrisome night and day.

He has been sleeping great since then though. Two nights and good zzzz's.

Now to wait for his ear surgery....

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August 1, 2010

>> Sunday, August 1, 2010

No events.

In fact he has had kinda an easy time of it the last few days. He isn't hearing well though. I can call him, someone can make a loud noise and he has no reaction.

Still taking naps too. I find the naps the most curious thing. I wonder if it's the heat.

His medications can cause him to not sweat, not sure I like that at all but when we think back, we have never seen him sweat. Not even when he wasn't on medication. So we thought about it some more, because that's what one does when one has a child who can not communicate. We realized the ONLY time we have EVER seen him sweat at all was during a seizure. And only on the top of his head. But that stopped when he started having nightly events. Surely that must mean something.

His energy level is insane. But it is VERY obvious when his meds are depleted, he stopes smiling as much. In fact, it becomes difficult to coerce a smile. He has lost 8 pounds. Doesn't sound like much but when that's more than 10 percent of your weight...it is a lot. He has gotten taller though, by a few inches so I am trying not to be too concerned. Still, gonna keep an eye on it, a very close eye.

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The Word

Sticks and stones...

We all know that saying, we have all taunted someone making fun of us with how much it DOESN'T affect us, by saying that. But it's very wrong. It should say:

Sticks and stones may break my bones but words will ALWAYS hurt me.

I get the idea. I really do: be so strong that physical pain is far worse than emotional pain. But when someone hits that soft spot, uses words that effect you to the very depth of your person, well, then, they will stay with you forever. That sentence will ring in your ears whenever you have a moment of self doubt.

But, words are just words. ONE word should not a feeling make. A string of words, a line of intent, that is what hurts.

I have heard insulting words all my life, I have tolerated some, belittled others and even been known to smack down the offender. However noble my intent, and my intent was indeed noble, it was a tad bit misguided.

I have always believed that ONE word is not offensive, it is how it is used. I see more and more people getting upset over ONE word. And a variety of them at that. The words are deemed offensive because we are told they should be, and people like feeling superior by telling others they are wrong to use it. That stance drives a wedge in the prospect of building a bridge, of creating understanding. It's off-putting to correct someone who is legitimately trying to understand and simply using the terms, or The Word, that they are familiar with. And when one looks at the 'offensive' words that are causing so much consternation, we find that only recently have they been deemed offensive. In the past they were simply used as an efficient means to convey a thought. Down and dirty it was. Now, they are just vulgar. But I wonder why?

I challenge you to look up the primal definition of any word that you are told should not be used. Look it up and try to see it outside of the context YOU have put it in. Look at the very heart of it, see it for what it was meant to be and not what we have corrupted it to be. Think for yourself. Don't be oversensitive, it will drive people away and confirm their worst beliefs. It's just ONE word.

Of course, if someone is trying to be mean, well then, make them cry. Anyway you know how.

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July 28, 2010

>> Wednesday, July 28, 2010

He had a couple of bad nights followed by a couple of good days. Int he last 48 hours...only two.

The one this morning was deceitful though, it seemed like it was a fairly minor one but it took him out for a few hours. Slept off and on for 2 hours. In fact, he has been sleeping a lot lately. Two naps a day for the last 4 days. Could be a sign that things are changing...hopefully for the better.

We will see and we will simply hang on to that little hope of the tubes helping him.

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All-consuming

>> Wednesday, July 21, 2010

2 events.

Although one is actually up in the air. It could have been a seizure or he could have startled himself awake. Either way he went right back to sleep. In the morning, he woke up energetic. We heard the door open and close several times, he played in the bathtub and jumped on our bed. At the bed-jumping point we got up and sat with him. We talked about his appointment tomorrow and Glenn got up to get ready for work. That's when Bug fell over. Complete drop. Absolutely limp. Took him a few minutes to come out of it and he was combative. I gave him his medications, fed him breakfast and Daddy took him to school.

It was then I took a breath and decided to play around on Facebook. I began to notice all my friends and groups have changed...they have all become Epilepsy focused. Not a bad thing, they are good people but WOW. Epilepsy does take over everyone's lives once someone they love have it. And it should, it needs to in order to be confident that your loved one will not get hurt. Diligence is key.

Also, communication is paramount. An organization of people living with Epilepsy can educate better and more effectively than one trip to a Neurologist. I like the new direction my online friends have gone, the support is so very important. Because Epilepsy sucks and it's extremely depressing when the new medications don't work or the old ones become less effective. It's impossible to go it alone and so...I'm not.

Thanks Epilepsy Friends! We love you!

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July 20, 2010

>> Tuesday, July 20, 2010

6 events.

I guess the med change is not helping. Damn. It's so demoralizing. He has a good couple of days and we see Bug coming back to us and then he seizes and disappears. I suppose that is the completely inappropriate to say, he is, after all, still in front of me, still smiling, still enjoying himself. It's just difficult to see him day after day coming out of these things. He reaches for me, he holds my head and touches my hair and grips so tightly I think I will explode with sadness.

He has an ENT appointment in 2 days. Only means he will, most likely, have tubes put in his ears. Nothing more. I have given up that little hope that anything will help him talk, that anyone has any answers. I have resolved myself to just trying to help when we can, and accepting more than fighting. Is this a permanent position? Most likely not, but it is one of those days.

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July 16, 2010

>> Friday, July 16, 2010

3 seizures before 1am.

He had a busy day. We went to the Alpine Slide with Aunt Karen and her family. Bug, Danny and I didn't go on any rides but Tay had a blast! I have some video that I will say I will post but what are the odds?

I am increasingly heartbroken about his new seizures. I am becoming physically ill over it. And today I will be channeling all my positive thoughts into the Gallery for EAU and UofU. Distraction is important but the lack of response to request for assistance in naming the Gallery has me thinking that people really do not want to see Epilepsy. They do not care about it, even after they have seen it, lived with it. I have no other way of thinking. It was a simple request.

Back to feeling alone and isolated.

I reached out to comfort him last night and I thought: This will never end. It will be his life until it kills him, as it has a chance of doing. Negative thoughts can be just as motivating. I woke up and looked over to make sure he was breathing and I hoped for a good day ahead. But really, I know he will have at least 2, possibly 4 more seizures.

It's all very depressing.

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July 10, 2010

>> Saturday, July 10, 2010

5 events.

May have been 6. Each was T/C and each lasted less than 15 seconds. He immediately went back to sleep.

It was a rough night. When he wasn't seizing, his sister was putting her legs over him. I would feel her feet kick my side (he was between us) and I would move her feet off. After the third time doing this, I started throwing her feet off. She stayed asleep the entire time, not once did a seizure wake her. THIS is why Tay doesn't sleep with us usually, but it's just how we ended up after cuddling.

Bug is good this morning, he woke up grinning. I gave him his medication immediately and he is playing with his Doodle Pro. No worse for wear, it appears. I am on high alert today though and we probably will NOT go swimming, or at least Bug and I won't. Sad, just sad. But maybe we will put the pool up in the backyard.

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Fax U

>> Friday, July 9, 2010

Why can't it be easy to get medical records? I must qualify, when I went to Henry Mayo Hospital in Santa Clarita and asked for Bug's records they smiled, and said: Have a seat. And 35 minutes later I had a CD with EVERYTHING on it. Wow.

So I did the same thing to UCLA and to EVERY Neurologist he has had and I got: K, we will copy them, for 40 bucks, and you'll have them in 6 to 8 weeks. That's confusing, I didn't think I was ordering the Fushigi. Huh.

And I am back at it again. No matter really since I need them anyway, but OMG, why does it have to be such a PITA?

We are attempting to get an appointment at the Barrow Neurological Institute in Arizona and they need his records FIRST. So, I am getting them and then I am getting him an appointment. But first I have to either download, or be emailed the records release form. THIS is where it's a PITA...the form is NOT easy to find online and when I left a message two hours ago to have it emailed...well let's just say I used my search engine prowess and found it myself. Thanks for the...ya. So I have to fill it out, fax it to the PCMC and then they will fax it to The Barrow. Mmm...K. That's a bit of faxing.

He is refusing to eat and just looks different. He wouldn't go to sleep last night, at least not easily, so maybe he is tired. Only 7 hours of sleep is unusual for him now. I feel like we are back in the days of Bug at 4 years old. I hope not.

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July 9, 2010

I was about to write 'No Events' when he went stiff and fell over. Tonic. Luckily, he was sitting down. He did go a full 24 hours with no known seizures and this one lasted just long enough for me to stand up and get to him. So less than 10 seconds.

Make that 2. I had to stop writing because he wanted to cuddle. Not a bad trade off as far as I am concerned. Not a bad trade off at all. After a little less than 45 minute cuddle he decided to play, walked over by the kitchen window and fell down against the wall. Big thud. He didn't even drop his Doodle Pro but it scared me.

I have given him his medications and he is laying on the couch playing, intermittently rubbing his head. :(

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NOT a dry spell

>> Thursday, July 8, 2010

Posting may have been slim, but Bug hasn't stop having at LEAST 1 seizure a day for the last week+...sometimes up to 4.

He had a couple of bad T/C's that lasted almost 2 minutes. Really, I don't know what to do. We can take him to the ER but should we HAVE to? I mean, he has a flipping Doctor...

Depression is the word of the day. I will have some Coke, cuddle with boy, get us out of trouble with our landlord and hopefully, have a nice calm day. It's all about the hope, and what kind of power is that?

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Holly - Bug's Angel

>> Tuesday, June 29, 2010

A very dear, long-time (only about 30 years) friend of mine posted a Blog Entry about my beautiful boy. I can not express how profound of an impact it had on me.

For the longest time I have felt so alone, that this battle was strictly between me and the powers that be. That isolation is mostly self-imposed I imagine, and I question the validity of it at all after reading what Holly wrote. Other's are also reading what Holly wrote and are realizing that they are not isolated as well. I have great friends who have always offered words of encouragement. We have unofficially 'adopted' new family because of what Bug is going through. And for that I am unimaginably grateful and extremely blessed.

It amazes me that Holly is thinking of my boy with everything else she has going on in her life, but that is what makes any person truly amazing isn't it? Being able to walk in someone else's shoes and support them without thought for yourself. That's Holly!

So I continue to fight the good fight and break through the barriers that exist for people living with Epilepsy, the first being: It is NOT who you are, it was what you live with.

Thanks Holly, I adore you more than you can ever know!

A wonderful read from a wonderful woman:
This is for YOU, BUG!! Connor Doran auditioning for AGT

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June 28, 2010

>> Monday, June 28, 2010

2 events confirmed and a hell of a night!

At 9:00pm Bug was laying on me and I thought he was going to sleep. We were cuddling, which is about the best thing in the ENTIRE world and all of the sudden...he jumped up and started running around. Okay.

I wasn't too concerned because we had been running around I was about an hour late giving him his meds so the longer he was up the better for the medication..I had NO idea.

At 10:00pm we took him to bed. Tay was already passed out on our bed so we let her sleep on Bug's bed next to ours. Glenn laid him down and he fidgeted. And he tossed. And her turned..and he got up. Twice and then he calmed down and Glenn went into the other room. Bug was down for only about 4 minutes when he got up again...I put him back in bed. This went on for about an hour so I walked him in to Glenn and said something along the lines of: If you are still awake he's yours...I need to sleep...he's getting up..ugh! Glenn smiled and took him.

In situations like these, it's best to get him to sleep or he will cluster all night when he does get to bed...so Glenn gave him his sleeping pill and an hour or so after that he finally fell asleep: at 1:30am! Double Ugh.

I thought he would be seizing so I couldn't sleep. At 3AM I finally fell into a deep sleep and at 7:30 he had a seizure. At 9:00am Bug woke up..at 9:30 he had a Drop and I gave him his meds. He had little events, I think, small absence, off and on all day.

By the evening, and Daddy coming home, he was all smiles and giggles.

The boy is so darn cute it's unbelievable. I wish I knew what it felt like for him.

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June 24, 2010

>> Thursday, June 24, 2010

Bug is having a bad day.

He had two seizures this morning and the second one was a doozy. He has not been off the couch in almost 2 hours...he is just laying there playing with a toy. Breaks my heart to see him down and out. Just praying he perks up and doesn't have anymore today. :(

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Myoclonic-Astatic (Atonic or Drop) Seizure

>> Tuesday, June 22, 2010

Because it's a mission to find out what is causing his seizures...I have begun filming. I hate it but hopefully some good will come of it.

This video shows possible Myoclonic activity, as well as a Drop Seizure that goes a little Tonic and possible Absence Seizures. It's about 8 minutes because I wanted to show his recovery period as well.

If you haven't seen a seizure before, this one is quite mild.

video

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June 22, 2010

5 or 6 events.

The reason I have no clue if it's 6 or not is simply put: Absence seizures are difficult to ascertain. I THINK he had one during breakfast but I am not too sure so...there's a question mark.

He had 2 T/C right after he went to bed, and then 2 more in the morning, he followed that up with a drop, landing against the wall. I want to take him to the ER but what would they do? They would just look at his history and as soon as they saw: Generalized, they would tell me I should try the Ketogenic diet.

I am beyond frustrated, I cry everyday, and there is NOT ONE medical professional who gives a damn.

I resent 'perfect children' and their parents who complain about a teething baby keeping them awake. I find I just want to scream at them to stop complaining and creating drama...it's just TEETHING. I hate this space I am in, I hate the space Bug is in more than anything. I know that it's depressing to hear about his troubles, I know that people with healthy children don't want to think about it. But I have nothing I can do to help my son.

I can call, but if they are unwilling to accept that call, then I call someone else. I have been this route a few times, I am not new to this game, I know what comes next. I hang up the phone crying, again. It feels so pointless, and so very depressing. There is no point in yelling at the phone operator, what can SHE do? If I can't talk to the Doctor...then I can't get him in sooner than September.

I feel like I am watching him die. He spent an hour sitting on me this morning, after the drop. He was barely there, that awareness in a person's eyes, was on automatic pilot, he was not interacting, he was spinning intermittently. And then he would stop, I would think: Is he going to seize? But he would lay his head on my chest and just breathe deeply.

We really are invisible.

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Oh this is good...

>> Friday, June 18, 2010

I called Primary Children's to get an appointment with Dr. Benedict, the woman we were so impressed with 4 years ago. Now, two months ago I was told I needed a new referral, that the old one only covered Dr. V, I corrected them and said: Uh, NO, it had NO ONE's name on it, he asked for it and I am unhappy with him so...

I was told that Dr. Filloux would call me. He never called.

Today I was told that because it has been over 3 years, and because we have changed providers that Bug will be listed as a NEW PATIENT and I have to wait until September. I lost it.

I was told that she would leave a message for the Neurologist on call who happens to be...Dr. Francois Filloux. That's right, he who ignored me two months ago.

The best part, the absolute BEST part is that Dr. Filloux is on the Epilepsy Association of Utah Board of Directors, under, get this, Parent and Family Networking. It's been over two hours since I called.

I have no hope for local help. I have no interest in trying anymore with the Pediatric Neurology Department at Primary Children's. I am looking to take him to Seattle or Arizona...I just don't know what to do, I don't understand why we can NOT get help. I am tired of begging for help and being treated like I am insane. I just want to scream. I just want to cry. But who would hear? And really, who would care?

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External forces

6 events. 6.

One Drop, 4 T/C and one Tonic.

Mother's all over the net are saying that their child is having additional difficulties as of late. Coinciding with almost the beginning of his new seizure patterns.

In the course of writing those few statements Bug came into the room, and promptly had an Absence. So, up to 7. I gave him his morning medication and am holding my breath.

I will call to set up a new appointment as soon as they are open. I thought I would wait simply because it could be the weather, it could be his illness, but the weather is more stable and his nose is barely running. So, this is a change and it need to be examined. I am not looking forward to this, for ONE reason:

They think I am an overprotective, paranoid Mother in denial...that I can not just accept that he has problems. Well, I am a little. Any parent would be, gender has nothing to do with it. ANY parent that holds their child 4 times in the night while they have Tonic Clonic seizures would feel exactly the same way. Or they are no kind of real parent.

He has yet to smile this morning, but he is spinning. And spinning is good.

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June 16, 2010

>> Wednesday, June 16, 2010

I thought we might have a clean and clear 24 hours, but it was not to be. He had a drop seizure last night right after his nightly medication. He recovered quickly, but wanted to cuddle and sleep. It wasn't the seizure, it was just his first day back at school.

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June 13, 2010

>> Sunday, June 13, 2010

3 T/C and one Drop.

He had the first two T/C before 12:30am and the third at 7:00am. The good thing is that he went RIGHT back to sleep after the first two, but the third one woke him up for the day. He was still tired but he refused to sleep.

I bundled him up and took him with me to the great room where he laid on the couch and my lap for an hour. An hour after that he had the Drop, luckily he was sitting down on the couch and fell over into my arms. I guided him down and made sure he was OK.

We used to note that when he had bad nights, the nights where he would have 10+ seizures he had a peculiar odor to him. I can not describe it but it was very distinct and he had that this morning. I expected him to vomit but he didn't. I can't help but think that is another symptom, or at least something to look at. But what do I know?

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Another craptastic day

>> Saturday, June 12, 2010

Now, I love rain and clouds, I am not a sun worshiper but this weather needs to get the hell out of here so my boy can have some peace.

3 drop's today, with one being in the bathtub. I was there, the only problem was he likes to hold water in his mouth when he is in the tub and he had a mouthful when he went limp. As soon as he came around, about 10 seconds later he spit it out, coughing. I got him out of the tub, warmed him up and he slept. 20 minutes he slept and when he woke up he was TOO happy and was having what appeared to be some myoclonic activity. So I think he was having a Gelastic seizure. It lasted about a minute and then he was cuddly again.

So, the first one was right after he woke up while he was sitting on Daddy. The second was in the bathtub and the third was just a little while ago while he was laying on the ground playing. We got lucky he was already laying down with all of them.

I am beside myself with disdain and anger at these things. This boy is so sweet, he is so happy, he makes people smile and he should NOT be going through this! There is no reason for this, there is nothing to learn, there is only the desire to change it and my desire is not his Doctor's desire obviously. Not laying blame just stating facts.

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June 11, 2010

>> Friday, June 11, 2010

I thought I could write no events but he JUST had a drop. Luckily, he was on the sleeping bag and fell against the couch. He didn't seem to have any bumps or bruises and it motivated me to putting the pipe insulation around the fireplace. I am still worried about him hitting his head on everything else I can't put insulation around.

Yesterday he had a bad T/C but only one. I will call about upping his medications. At this point I think a VNS won't help, and the Keto diet is too dangerous with both his Grandfather's having heart issues. So that leaves finding out the heck is going on or more medication.

Sigh.

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Multiple Types Suck Even More

>> Wednesday, June 9, 2010

3 events. Well 4 actually.

First was Tonic/Clonic and the second Tonic. He had a drop seizure earlier in the day, Mom said it was't bad but it was horrible. Those drops...suck more than most. He is bruised on his arm this morning because of it. That poor arm is all beat up. For some reason he hits his right arm on 'something' on the way down.

This morning he had the third (4th since we count the drop). It was a full T/C and it took him almost 30 minutes to recover from it. He was shaking and holding his breath. I wrapped him up in three blankets until he wanted to get up.

He went into the great room and played for a few minutes before he had an absence that turned into something really odd. He was seizing, because he was rhythmically contracting BUT he was able to stand up and walk toward me. He was fighting it and I thought we were going to the ER.

He cuddled with me for almost an hour, holding his head and tugging his ears...then he just sat up and started playing.

I wish he could tell us what was going on but he can't so we guess. We gave him his morning medication and 400mg of Ibuprofen, just in case he has a headache. Sigh.

So in the last 24 hours he has had 4 maybe, 5 types of seizures. WHAT DOES THIS MEAN? It can't be good. Yes, he is sick, but he has NEVER had all these different types at once before.

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June 8, 2010

>> Tuesday, June 8, 2010

No events.

At night.

He had ONE drop seizure just before dinner. Drat. He must be feeling OK though I ca hear Taylor screaming at him to get down. Which I assume means he is climbing on the counter in the upstairs bathroom. Daddy is in the room next door so I am sure he will intervene if required.

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June 7, 2010

>> Monday, June 7, 2010

He had one more drop seizure that night and then had one more Tonic at 5am the next day.

Last night was peaceful, and then he woke up and walked into the great room, sat down to play and fell over with a Tonic. Gave him his meds and he has had NO problems today.

He is just burning through them too quickly. ARGH!

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Shit.

>> Saturday, June 5, 2010

That's right and now I have polluted ALL the people that link to Bug's blog. Sorry but I think you will understand. There is no other word, and if you are that uptight that you can't allow me to say things like that then please, stop linking, I don't need that type of judgement on top of living with the nightmare that is Epilepsy in my child.

Bug had a NASTY Grand Mal last night. He fell asleep at 5pm and ten minutes later...a 1+ minute seizure. He was gasping and very rhythmically contracting..it looked tiring and it looked painful. I hated it. He didn't really recover at all last night.

Then he slept 16 hours. For those of you following the daily goings on that means a change of some sort. Bad sort as it turns out.

I was at the EAU Yard Sale all day and while I was gone he had two drop seizures. Now, drop seizures are VERY dangerous. He bruised his arm this time and landed on his face each time. It is typical of drop's. Imagine the person just falling over, HEAD FIRST, and doing NOTHING to stop it. He HAS had them before when he was 3 and for 4 months. He had a max of 5 with a week or a few day interval. 2 in one day REALLY blows.

I am trying not to be shredded because of this, I am trying to think only of making sure his medication is staggered better since the daytime events are changing again. And we will be following him EVERYWHERE and padding everything we need to pad. But this one is difficult, it could mean he is getting worse. I agree with Glenn it is kinda CLASSIC Thalamic tumor.

One would think that they would have seen it by now but it really depends on the size and the depth. So maybe, we see if they can do another MRI and maybe a spinal tap. I don't want that but it may be a great diagnostic tool.

He is playing with Papa and seemingly very happy and not bothered so fingers crossed he has a good night. Glenn gave him 2ml of Keppra on top of 2 Zonegran and 3 Lamictal. He hasn't had a seizure since then, almost 6 hours. Good sign, but still...Shit.

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June 4, 2010

>> Friday, June 4, 2010

2 events.

At 11:30 he had a T/C that lasted less than 20 seconds. He screamed a little bit again.

An hour later he had his last one of the night. It was Tonic and lasted less than 20 seconds.

His recovery time for both was instant. And I mean instant. Right back to sleep.

While these are better than they used to be, they tell me that he DOES respond to medication it just wears off.

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June 3, 2010

>> Thursday, June 3, 2010

No events.

And boy, is he full of piss and vinegar. To the brim in fact. Happy though so what more can we ask for?

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June 2, 2010

>> Wednesday, June 2, 2010

One event last night. It was a full T/C and lasted about 20 seconds. It had been awhile since we have heard him scream during one, last night broke the record and my heart.

He has been adorable and annoying today, not very talkative and extremely active. He did say Dada to Glenn, so here's hoping he continues the proper sounds to the proper people.

Over the Memorial weekend he had a few...5 total. 2 of which were absence. Bummer, but I would prefer those to the nasty T/C.

I will be posting a weather widget on this blog so I can keep track of the climate during his clustering.

I think his ears are both bad again..he hasn't been responding to noises properly and has been clumsy. It's so hard to say if the clumsiness is the medication or not but I note it anyway.

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SUDEP

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Last FULL Day of School!

>> Friday, May 28, 2010

No events. None. Hoorah.

He is asserting himself a lot today. Tay has been smacked a few times for trying to get him to do something he would rather have not done. I have to correct the behavior but I am glad to see him defending himself and forming an opinion about what HE wants to do.

Tay loves to grab him by the sleeve and drag him around the house. He usually goes along with it but not today. Maybe not anymore. We will see.

Because he was so sick all week his last day was only a few hours long. But he enjoyed it. We all did. Tay was entertained and we did a lot of talking about Epilepsy and writing Children's Books. Making video's too. Bug is very photogenic, although annoying about bath time.

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6 months later...May 2007

>> Thursday, May 27, 2010

6 months after the last video..so May 2007, we can see he has started crying more. In this video you can hear him whining and crying and just being upset every so often. He was also put in the stroller/cart because he was running away farther and farther. He could not be consoled and only constant movement made him happy. Again, you may say Autism BUT that doesn't change the fact that something happened to bring us to that diagnosis. Something, other than, or that caused the seizures.

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May 27, 2010

Happy Anniversary Daddy!

1 event last night and none today so far. He tossed and turned to get to sleep and about 30 minutes after the squirming settled down he had a T/C. I thought that meant we would be in for a night of seizing but he only had the one. Curious and entirely pleasant, for what it's worth.

We wondered out loud at lunch if he would be seizing off and on all day, every day without his meds and we resolved ourselves to Yes. he would.

He is feeling better today nose is running but PLENTY active. Might have to sell him.

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More proof

I do not believe that anyone just SUDDENLY, and with no trigger, forgets how to eat with a fork, there is a reason. Doctor's say: That's Autism. I say: That's an excuse, not a reason. FIND the REASON.

This video was taken a month before the IHOP one. He is acting like a normal little boy: Throwing money in the fountain, staying close, listening and responding to comments. Now, if you give him coins, he will eat them, or he will drop them, he will do a lot of things, but he will not throw them into the fountain.

video

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Regression Redux

I often talk about how Bug slipped from us so slowly that we didn't notice. It's not that we weren't paying attention, it's just that it was so gradual. I hear how I just haven't taught him, I hear how he just hasn't learned. And I scream: WE DID! HE DID! SOMETHING took him away!

It's a small video I came across. Those of you that have been at a table with Bug lately, know the mess he makes, and the food palpation that occurs. I say: It wasn't always this way and people just smile and nod. This video is of Taylor winking and at the end we see my little man, who was 4 at the time and had been having seizures for over a year (only about 10 at this point) eating his food. With a fork. And no coercion or assistance.

video

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May 25, 2010

>> Tuesday, May 25, 2010

1 event at 4AM...but nothing after that.

He has a low grade fever so he is staying home with me. I hate it when he is sick. He looks completely miserable.

he just had another event...darn it all. He was sleeping peacefully at my feet and then full T/C. Took him a bit to recover too. The T/C was less than 40 seconds but the it took him almost 2 minutes to completely recover. He is playing with the stacking tower but not wiggling at all.

I was hoping he would be able to go to school tomorrow but it isn't looking like it at the moment.

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May 24, 2010

>> Monday, May 24, 2010

4 events but you would never know it. The boy amazes me, he was a little low going in the AM but perked up and enjoyed school. We think. :)

He is not hungry. I even bought him his favorite: McD's cheeseburgers and he just picked at them and didn't actually at much.

He was such a cutie at the Epilepsy Association Meeting we went to. He played on my lap and only wiggled a little...which is a lot actually. He fell asleep fairly easily too. I hope he has a nice, relaxing sleep.

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Sunday!

>> Sunday, May 23, 2010

Busy few days and he has had 0 events in the last two. Glenn thinks he had a mild one at the Park Saturday morning. He said he just 'fell over' and was a limp. Could have been a drop attack like the last one I saw. I hate not knowing.

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Update - May 20

>> Thursday, May 20, 2010

He has had 2 events during the day today.

The first one was at school. He was at lunch and locked up and fell over. Sarah caught him before he hit the floor, thankfully. The nurses were there, everyone was there. It tough to watch him seize and I am sorry they had to see that.

The second was at 6:10PM.

He came home, I fed him, gave him the medication I FORGOT to give him and he played. I had been quilt ridden all day and then THIS made it worse.

We were sitting on the couch and he began to go rigid and stare. I helped lay him down but he was already going backward. He slowly began going Clonic and they were INTENSE. his face twitched, his eyes blinked and his whole body rhythmically contracted. It lasted a full minute. And it took him a good ten minutes to fully come out of it. It sucked.

He is sleeping now. Going in and out. Mostly, I think he is just exhausted.

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May 20, 2010

2 events and possible two small weirdnesses.

The first one last night was nasty. It was almost a full minute and he had a tough time recovering. Broke my heart to see him like that again. The meds...just aren't strong enough and either we up them and risk his organs or we actually start looking at VNS.

We had to wake him up to get him to school this morning. Maybe, NOW, for the first time in his life he will let us set a routine. Ya, I know, some parents are all about getting the kid to bed at a specific time, and getting a nap at a specific time and well, I have seen the tailspin that occurs when the child, and the parent, don't get the child to sleep at their appointed time. I didn't want a child that inflexible and he always just slept when he was tired, except for those few bad days and when he turned 3. And I wonder if people know how upsetting and rude it is to say: He just need more consistency. Yep, I am a bad Mother because I let my child self-soothe. And ya, Bug's epilepsy is just because I didn't have more of a routine. Some people, really do blame the Mother for the child having problems. You know, sometimes, it just IS what it IS and NOTHING could change it. But we can work to adapt to it.

So now, we will see if we can get him more into a routine.

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Forest Fires and Rattlesnakes

>> Monday, May 17, 2010

Happy Birthday NANA!

4 events all AM.

He went immediately back to sleep.

We had his ENT appointment and I was nervous how he would act since he had a bad morning but he was great! Tay was too! I got lucky or the complaining is finally paying off.

Turns out that Bug's left ear is clear now. Bummer, and yet, it explains why he has been responding better and being so verbal. He literally has a more comprehensive look in his eye and he is being coy too. Totally darling. Anyway, his right ear was still fluid filled so Dr. Munz sent him over for another hearing test.

His left ear passed, his right ear ALMOST passed and the eardrum is responding but not properly...so I thought he will advise the tubes. But he didn't. He said: Let's wait ANOTHER 2 months and see if the right one clears up. I wanted to scream and throw things but the only thing I was holding was Bug so THAT was a bad idea.

Instead I said: So at this point we are looking at brain stem processing issue (fighting back tears)?

Probably.

Knife plunge.

I just shook my head and said Ok, hugging Bug a little tighter and giving him a kiss on his head.

Dr. Munz was quick to follow up with: "BUT that doesn't mean that he won't be able to just one day start talking. I have patients that are 8 or 9 years old and they just spontaneously start saying things and he has a good chance of that since we can't really find anything wrong."

And there it is.

Can't find anything wrong.

That means that you are looking in the wrong place.

So we wait 2 more months and we enjoy the little Dada's and Mama's and DooDoo's we hear and we encourage it and we pray for that moment when he just says:

So what do you want to talk about? Forest fires or rattlesnakes?

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May 16, 2010

>> Sunday, May 16, 2010

No events.

Last night was blissful, I mean blissful. I can't say that about too may nights in the last 3 years, not since the nightly seizures started. The better thing about these is that although they are more frequent we are seeing less of an impact on him.

He took a nap and had two though. :( But after each one he smiled at me and held my hand and cuddled. I just adore this little boy, he is so resilient...and hyper at the moment.

He has his ENT appointment tomorrow at 9am. We will determine if he needs tubes in his ears. I am excited and nervous and all sorts of things. Mostly I am bummed that I have to take both the kids, by myself. Sigh.

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May 15, 2010

>> Saturday, May 15, 2010

1 event.

Hoorah for 1. It was in the AM and complete T/C. Which is the bummer. But he went back to sleep for 30 minutes or so and then climbed in bed with me. He cuddled and smiled.

He is getting uncomfortable sitting on me so that has slowed down. I figured it would. He seems to be able to ween himself of comforting things...thumb sucking for one. He did that all on his own when he was 4. We were amazed. And now, not sitting on me as much, but sitting near me. He also is not liking when I pet him or kiss him...typical 7 year old boy in that regard.

Can't wait for Monday. We will find out what we are doing about his ears. So off I go to ind the Otoscope just to see what Doc will see.

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May 14, 2010

>> Friday, May 14, 2010

5 events...all in the AM.

Recovered nicely and was 'normal' at school. They said there was no difference in him than any other good day. With the up in Zonegran, he seems to be more and more quick to recover. He is following directions better and will not push too much when told to stop.

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May 13, 2010

>> Thursday, May 13, 2010

7 events.

Ya it sucked. He had 4 Tonic after going to bed, all between 10pm and 12am, then he slept peacefully.

I held his hand all night just so I could feel if he had anymore but it appeared we were in the clear most of the night, until 5am at which point he had 3 more Tonic. All of the seizures last night and this morning were less than 20 seconds and he went back to sleep immediately.

He is tired this morning, or at least he appears to be, and he is acting like something hurts (furrowed brow). I was thinking he had a headache but after the amazing amount of gas he has been letting loose...pretty sure it's an intestinal issue. With all the milk and other food he ate yesterday it's not a surprise he got something that bothered him. Really would like someone to take his stomach issues into account.

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May 12, 2010

>> Wednesday, May 12, 2010

Evening went well, but meds wore off by 4AM.

He had 4 events, all Tonic, all less than 20 seconds. Was a little slow going when he woke up but still went to school and was pretty darn happy about it.

He got his Yearbook from school too. It's really cute.

I need to update with the pictures from the Field Trip to Salem Pond on Tuesday. We must have walked 2 miles that day, circling and circling. He caught a fish, we had it cleaned and gave it to someone that actually likes fish. Bug was mostly disinterested in the thing, but the water was great! It took all my effort to keep him out of it. And it rained off and on, but he didn't care.

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May 11, 2010

>> Tuesday, May 11, 2010

He is on a roll...4 nights no seizures.

BUT he did have two Absence. One this morning and one yesterday morning. Those don't appear to cause him as many problems so let's hope it's a new pattern. Heck of a thing to hope for ain't it?

He is fairly talkative lately, really cute.

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Salem Pond and The Fish That Never Was

It rained and continued to rain all day that day. No matter, I like the rain and Bug *is* seven and rain means: MUD! And PUDDLES. And WET STINKY SOCKS. It means pure joy.

It was Salem Pond's Annual Fishing Day, or something to that effect, and the schools that were there...well...more than fishes in the pond. It was really cool.

I can describe how Bug just wanted to get into the water, and how we walked around and around and around until we were stopped by one of the many helpers there, and asked:

Has he caught his fish yet?

How to answer? How to answer?

No. (snap)

So they walked us over to the chair under the tent, and plopped a fish pole in my hand. The other hand was holding Bug. I don't know if you know this but you can't fish with one hand. So, Bug was tugging, the fish that was already on the line, was tugging and I was sitting there looking around at the fine folks and saying: Ummmm...I can't let go of him or he will jump in the lake.

They said: Reel him in!

I said: With what? I can't let go of Bug.

Finally the man that was actually not just hearing but was paying attention to the situation stepped in, grabbed the line, that Bug was now playing with, and held up the fish. I took Bug's hand and let him touch the fish. He stopped dead in his wiggles and felt the fish. He pulled his hand back and then touched it again. He liked it. And with that, the fish was placed in the bag and we walked over to the cleaning area. I took a picture BEFORE it was gutted just as proof.

We ditched the fish with the rest of the class and walked around some more. It was cold, and we had fun. I fed him a little lunch that was provided for us and then we walked some more. He started to shiver and I wrapped my arms and coat around him until all he could do was look up and smile. He couldn't move, but he was warm.

And with that, the fishing day was over. His teacher came over and said we were getting on the buses and heading back to school. I checked him over and he was, remarkably dry and clean. Curious. I didn't need the extra socks in my pocket.

We left the fish at school with someone that actually eats those things because...ick.

I can describe that but it's hard to explain..as with most things: It has to be lived in 3d with color!

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May 9, 2010

>> Sunday, May 9, 2010

No Events.

Because Mom and I were buying dresses Glenn gave him his meds. Forgot what I told him about how much I had given him and gave him more Zonegran. oops. But it worked. So..on to a higher dose trial.

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May 8, 2010

5 events.

Big sigh. So we upped his Zonegran. After researching online and finding, in several places that he can have up to 400mg a day, we upped him to 200. So we will see what tomorrow has in store.

He was pretty good all day. Really good in fact. WE took him to the iFly and he walked around pretty darn well at FatCats. It was a surprise, very pleasant one at that!

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Regression

>> Friday, May 7, 2010

It appears, aside from having a bad day maybe, he probably did regress. Damn.

He wouldn't walk off the bus properly and he wouldn't get into the car properly, he is wiggling all the time and will not smile. This sucks. And it's my fault. Hopefully, we will see him back to himself tomorrow with no seizure tonight but like I said, I gave up wishing for things.

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May 7, 2010

6 events.

We had been on a a roll and then he missed his morning medication. Damn. He had been tough to get to sleep on Wednesday night, so tough in fact that at just shy of 1:00am I gave him a sleeping pill. He had NO seizures but he slept until 10:40. Understandable. So when he woke up I got him ready for school, fed him 2 egg and cheese sandwiches and got him there by 11:30. BUT I forgot his pills. BAD Mommy and I feel terrible about it.

SO I gave him one more Lamictal and one more Zonegran to hopefully help. But it didn't. :(

And this morning, he isn't following directions, he is taking his clothes and diaper off and he hasn't made a sound. Last night, he said I love you. It wasn't clear but I asked him to say it and he did. Wishful thinking? Nope, I have given up on wishing and am focusing more on the tangible aspects of therapies for Bug. I am afraid that those 6 seizures plus the night that almost never was have made him lose some of his memory.

Damn. But we will see what this weekend holds. He sure as hell got his meds this morning.

I got some video of what we are wondering are Gelastic or Myoclonic events. When I pull it from the camera I will put it up and you can tell me.

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We hate naps.

>> Monday, May 3, 2010

Most Mother's LOVE the nap time...they do everything they can from an early age to teach the youngster to nap so they can have a break and get stuff done. At our house, we have grown to hate nap time.

Sure enough, he fell asleep and sure enough, he had a T/C. Less than 30 seconds and very intense. He recovered almost immediately and has been playing politely, albeit a little loudly for a few hours.

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May 3, 2010

One event.

He had just fallen asleep when he had a 20 second T/C..right back to sleep and no more. He was so deep in sleep that he stayed in the same position all night, didn't move. His sister, on the other hand, was all over the place. They both are still sick.

He is threatening a nap at the moment. Better make sure to get him his morning meds.

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So....WOW!

>> Sunday, May 2, 2010

I read this the other day and was STUNNED by the implications. Just STUNNED I say. I will link to this in several places because I find it to be VERY important for A LOT of people affected by Autism, Epilepsy, ADHD as well as Fragile X.

Promise seen in drug for fragile X syndrome

We thought Bug had Fragile X. We were almost so positive that we would have put money on it. He had A LOT of the characteristics and I have a nephew that does as well, only no seizures that we know of. With ALL of the boys in the Hultgren clan having speech issues and some other delays, it was a red flag. But his genetic test showed NO such anomalies. While it was a relief, it was also a source of great frustration.

His EEG's have shown various different patterns including all over brain activity, sudden and not unexpected, however the synapses fire so intensely he has seizures. Or so we originally thought. His last EEG was different, we think. But we were told he has slow Alpha Waves and we are pretty sure that is bullshit (insert clean word if you like). We doubt the lead that he pulled off got attached properly because he does NOT show signs of slow Alpha's. Denial? Hi, I'm Annette.

Regardless, this drug has the potential to help so many different neurological issues it's remarkable to think about it. If this drug can not JUST slow down synapses, but regulate them like they think...OMG. Just OMG. It has potential to help Bug a lot. I will be doing some more research and maybe posting about it unless of course, I get distracted again. By slowing down and regulating it would help curb those peaks that cause Bug's seizures. IN THEORY. Can I talk to his Doctor about this? Doubtful. he still hears: Ketogenic Diet and VNS when we have said NO to those twice.

I will be finding out how to get him into The Barrow Neurological Institute in Arizona.

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May 2, 2010

4 events

Bug is getting over his illness still and had two events last night and 2 this morning. The first one last night was tough.

20 second Tonic followed by almost 20 minutes to fully come around. I hate those. The next one was about 30 seconds but he went right back to sleep, also Tonic.

At 6:40am he had another Tonic Seizure less than 20 seconds and he went back to sleep. The last one before he was up for the day was 30 second Tonic and he went right back to sleep again.

He is happy and hungry today. Sure signs he is almost over his illness but I will still be holding on to him tomorrow since his nose needs to be wiped so much. Tay has the cruddy crud now...fighting her fever seems to be more difficult.

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April 30, 2010

>> Friday, April 30, 2010

MAYBE an event.

Sometimes it's hard to tell when he is sleeping and they are so short. We were all in the bed...Bug, Tay and me...in that order. He had fallen asleep while we were watching a little TV and I heard him cough. I looked over Tay and saw an outstretched arm. Uh Oh. So I rolled him over. He rolled easily and his eyes were open, he turned to look at me and he did seem a tad out of it but he had been asleep.

He didn't have anymore issues after that He would stretch ever few hours but not a seizure. Just stretching and groaning. Eyes closed. It was cute but annoying all the same. Woke me up a dozen times just because he needed to stretch.

Not a whole lot of talking today. Bummer, because it is darling!

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April 28, 2010

>> Wednesday, April 28, 2010

No events.

He is feeling MUCH better. Very energetic and happy.

Last night, I stayed up late to decorate for Tay's birthday, when I got to bed Glenn woke up and told me that Bug has been asking about me. Glenn said that Bug looked at him and said:

Where Mama now?

I was intrigued and an half hour later Bug woke up and saw me...he reached out and said: Mama!

Then: O Dada?

I told him Glenn was in the bathroom and with that, he curled up in my arms and went back to sleep.

Today, he has been chirping but not talking. Curious that he speaks when he is sleepy but not when he is awake and active.

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Naptime...

>> Tuesday, April 27, 2010

and one seizure. So far. I gave him his meds and we will wait and see how he responds. It was full T/C about 20 seconds.

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Sigh

No events the last two nights BUT...

He DID just have an Absence Seizure. No doubt about it this time. Very classic.

He is pretty darn sick too, fever is gone this morning but I am anxious to see if it comes back tonight. IF it does I am thinking: Ear Infection. Poor kid, can't just be a kid and run and have a blast. :(

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April 25, 2010

>> Sunday, April 25, 2010

No events.

BUT he is sick and we may have missed one this morning. Poor kiddo, has what Glenn had last week. Fever and everything. Good thing he doesn't have febrile events. Still makes me sad when he is sick...he looks so tortured. :(

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April 24, 2010

>> Saturday, April 24, 2010

4 events AFTER the ones last night. So yesterday he had a total of 8. We hadn't given him his morning meds.

Still, his events are happening more frequently after a 2 weeks of nothing..and with the increase in Absence I think I am gonna drive them crazy to get another EEG. That is, of course if it has been a year since the last one and I THINK we are coming up on that.

He is happy and smiley, of course, not giddy, not Gelastic - y. Not sure what to do. Lack of sleep and headache maybe muddling things.

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April 23, 2010 - Update

>> Friday, April 23, 2010

2 events.

Since he fell asleep. So 4 total today. One in the AM, the one at school and now this...let's hope all his meds kick in, even though it has been over 4 hours since he got them.

The first one was at 10:40 - 20 second T/C
Second was 11:45 - 10 second Tonic

Please, let him sleep soundly. My beautiful boy.

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School event

Another school event. At 12:45.

They think he was in seizure for a minute and a half and that it started in the left side and then progressed to his entire body.

I want to cry.

I want to scream.

But he is fine. He is smiling and EXTREMELY hungry when I brought him home. He ate two Chimichanga's with chips and begged for more. He drank a bit but not as much as was reported from school.

Sarah mentioned that she thought he spoke the other day. She said what I have heard others say, and what Glenn and I have said before:

I KNOW he said something, I just couldn't tell what. But it WAS clear as day.

This is the bright spot in the day. May 17th can't come soon enough.

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April 23, 2010

2 events. 10 seconds each..one at 11:45 last night and one at 7:30am this morning.

He missed his morning medication yesterday because I was at the University of Utah taking an Insider Tour. IT WAS GREAT...and it was sobering.

It appears that the glossy-eyed looks I get from Doctors are mostly after I tell them Generalized Seizures. Because with Generalized Seizures the electrical activity happens all at once, from all over the brain. If it was a Focal Seizure then he would be a surgery candidate, but because his little brain misfires either all at once, or from a specific location yet to be determined, they shrug and shut down. No kidding. Not all do that, but the ones that will see Bug do.

I don't get it. I just don't. He has had over 1500 seizures in 4 years. 1500. What more does it take?

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April 22, 2010

No events.

Fairly talkative and really fun. Or so I hear. I wasn't home most of the day, and he was at school so..

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April 21, 2010

>> Wednesday, April 21, 2010

No events.

We have modified his medication. He gets:

AM:
50mg Zonegran
100mg Lamictal

PM:
125mg Zonegran
175mg Lamictal
8ml Keppra

We are going to up the Zonegran, since the manufacturer states he can go as high as 400mg in a day and phase out the Keppra. The Keppra made him very moody and angry when he first started. We upped his Lamictal a little and then, when he adjusted to it, he did fine. But of all the meds, the Keppra seems to be less effective.

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April 20, 2010

>> Tuesday, April 20, 2010

One event.

This morning he woke up at 7am after a very peaceful sleep, played for a few minutes and then went back to bed. At 9am he had a 5 second Tonic and was up for the day. Probably.

Very hungry this morning.


Pretty sure I witnessed an Absence Seizure a few hours ago. Glenn and I have been wondering about some of his actions for a few weeks and this one...was just like his old ones only shorter in duration with NO recovery time.

He was looking down, the rest of him frozen in place, and he was not responding to my touch. It lasted 10 seconds and then he was back with a vengeance. Gonna try to get them on video. Wish me luck. I am going to need it.

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Home for the day

>> Monday, April 19, 2010

WARNING: IF YOU ARE A LIGHTWEIGHT ABOUT VOMIT - GOOD LUCK!

Just shy of 1PM I was getting ready to head home from Salt Lake when I got a text from his teacher. It said:

Glenn has thrown up, can you come get him?

I texted back that I was in Salt Lake but I was on my way but I would try to get Glenn there first. So I called Glenn and asked if he could get him.

Again, as I have said multiple times before, it seems like a simple statement BUT when Bug pukes it's a two person job. One person to calm him down and watch him in case he pukes again and/or he seizes, and one person to clean it up before he plays in it. Yes, he has eaten his own vomit on my watch and that is how I know it's a two person job.

To be specific: I had cleaned him up and was proceeding to clean up the couch when I looked down and he was hand to mouth in it. You're so welcome for that visual - and suddenly he is NOT as cute as he used to be is he?

So we are home, Glenn and I, Glenn on his phone call and me, being mauled by the boy and when not mauled, watching him burp and roll on the ground. It's charming.

If he can't keep his meds down - he will most likely, seize all night. I hope we are not in for a long night.

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Can't win for losing.

>> Sunday, April 18, 2010

2 events and one linen change.

A few days ago I posted about his gagging...well yesterday he had hiccups off an on all day. Usually that signals a growth spurt and I end up buying him new shoes. But it can also mean he is going to go on a pukefest.

At 11:30 he had a 10 second T/C. At 3:00am he woke up and tossed and turned for about 15 minutes before I heard: Blech. God bless the kid, he puked on his sleeping father. Missed him by a millimeter actually but still...made me feel not QUITE so dirty. We bathed him quickly and he went back to sleep immediately. We took another 30 minutes to clean the bed and air out the room.

At 9:30am he had another 10 second T/C.

Today he hardly ate. Could be he is a little sick to his stomach...could be it's his meds. Could be a million things.

But he just had another seizure. 10 second T/C. - 9:30pm Smiled and kissed me and its trying to go back to sleep while watching me type. Really cute.

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April 17, 2010

>> Saturday, April 17, 2010

4 Events.

All were Tonic/Clonic...all were less than 10 seconds and recovery was immediate - he went right back to sleep.

I am very depressed this morning.

He is playing and smiling and being really cute, expect for playing with the door stopper - that is loud and annoying, and I just have no clue what to do. I think my warrior status will be revoked if I don't snap out of it.

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I didn't want to but..

>> Friday, April 16, 2010

he had to go to school. I felt bad taking him there when he had so little energy. All I wanted to do was keep him with me and cuddle with him all day. But he has to get all the information he can after these events. We need him to not forget what he already knows.

When he woke up this morning, he wanted to be held, and he wanted ME to hold him. This is a far cry from the GIMME DADDY of a few years ago. It's probably the extra cushions I have. :)

He didn't eat his pizza at school yesterday, and they tell me he is avoiding milk altogether now. He used to have the chocolate milk but not now. Something has changed.

So that got Glenn and I talking about calcium channels, and sodium blockers and blah blah. More research to come.

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April 16, 2010

5 events. 5.

At 10:05 he had his first, it was about 30 seconds and Tonic. It took him almost a minute to recover.

At 10:47 he had the second, a 10 second Tonic.

He slept well until 4:45am when he had the third. It was a 5 second Tonic.

At 6:40 he had a 5 second Tonic and at 7:54 he had his last 5 second Tonic of the night/morning.

I will find out what he had for lunch at school yesterday. We are both tired and I think we both have headaches. I know I do.

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April 15, 2010

>> Thursday, April 15, 2010

One very small event.

At about 11:30pm he locked up and his eyes hot open for about 5 seconds. I grabbed his hand and it wasn't but 3 seconds before it relaxed and he started drifting back to sleep. He slept pretty well.

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Hi...don't mind me...I'm just his Mother

>> Wednesday, April 14, 2010

Why is it that when I tell Doctors about his weird habits they alway find some bullshit-i-read-it-when-i-was-in-med-school answer? Why do they dismiss the daily choking on phlegm?

It's not allergies...Super Doctor Allergy Man tested him and his scratch tests that where limited to a handful of intense allergens were negative (so why do I have to have 30 scratches and he only has 10 that have 3 allergens each?). Certainly it can't be a PHYSICAL problem. Surely it can't be he has a funky gag reflex, or a touch of the GERD? Certainly not.

I have been sitting by him almost since he got home at 4:15 and he has been gagging off and on. About once an hour I think he is going to puke. He has done this off and on...oh...forever. It's one of the things we have on his list...I see a new page on this blog being built. And EVERY Doctor has blown me off. I don't want to take him to a Gastro Guy, dear God I will be made to feel even more like a freak than I already do.

But, screw that, I am insane then, because I want to know what it is he can't tell me. I want to know why he looks at me as if he is going to say something and then just smiles. Someone, somewhere will put together the pieces.

And I need to get a video of his twitches. These are pretty new. K..going to go cry for a spell. A long spell. Sad part is, it won't make me feel better.

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April 14, 2010

No events. I think.

He grunted and did a little jerking thing while he was sleeping. I grabbed his hand and he responded so if it was an event, it was REALLY short. I won't mark it, since I can not be positive.

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April 13, 2010

>> Tuesday, April 13, 2010

No events.

May be getting sick again, both the boy and myself. I hope not but OY! the headache. And he didn't want breakfast. :( Hopefully, he will eat a big lunch and be a happy boy all day.

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A day in the life

I once wrote about the ugliness that is administering rectal Diastat. How much fun was that? Today, I think I will elaborate about actually living under the spectre of Epilepsy.

I say under because in a lot of ways, and in a lot of places, Epilepsy is looked down on. People with Epilepsy are thought of as second class citizens and treated as outcasts. Many people harbor the misguided idea that because a person has Epilepsy then they MUST be deficient in capacity or odd in some way. While Bug has other problems, his Epilepsy does not make him lacking in intelligence. Even his OWN Neuro thought his lack of speech was related to his seizures. This is, most likely, NOT the case. He may have a brain stem issue that may be causing the speech problem and the seizures, but in no way can the Epilepsy be considered the CAUSE only a symptom.

When a child is diagnosed as having Epilepsy, it is advised that quite a few daily tasks be modified to prevent the person from injury. There is a list of SHOULD NOT's that I think you might find interesting:

A child with Epilepsy SHOULD NOT

  • Go swimming alone. ALWAYS make sure that someone who is aware of your Epilepsy goes swimming with you. ALWAYS wear a life jacket.

  • Ride a bike - With a helmet you ask? Nope, it is SUGGESTED that children do not ride a bike at all. Imagine riding your bike on the side of the road and then finding yourself in the middle of the road because of a seizure? Again, ALWAYS have someone with you.

  • Bathe without someone nearby - Yep, the bathtub and shower are dangerous places to have a seizure. Been there, seen that first hand.

  • Jump on a bed or trampoline - The hell you say? Yep, bad idea even with someone around. The fall from a trampoline or bed, above ground or not, can break legs, arms and necks if the person is unable to control their fall in any way.

  • Play on playground equipment - this should be limited to shorter equipment and a person must ALWAYS be present.


That is a small list. I won't even mention Skateboarding, skiing or any other sport where momentum is a factor to fun. Helmets should always be worn when any physical activity is being done and, get this: The rule is that if your feet leave the ground, you should avoid doing it.

Sucks all the fun out of childhood doesn't it? If you let it, it does. But if you are parent of a child with Epilepsy, you make EVERY day count.

It can take years of having seizures to begin to recognize the signals of an impending event. Even then, there are not always indicators that a seizure is about to occur. This is why these precautions are so important.

Do WE follow all of them? Yep. We do. Bug is never alone for very long. We do let him jump on a trampoline, small one or one with a net around it but even then, I am a nervous wreck. I do NOT tell the people, with whom he is playing, to be careful or mindful of him simply because of the possibility of a seizure. I mention to them that he can not communicate and we are not sure if he can understand at all, that's it. I don't want them to be frightened of seeing a seizure, because I have seen Mothers take their children home after I explain about his Epilepsy. Am I imagining it? I wish.

Everyday, in every way, his play and his actions are evaluated for safety. Can you now imagine watching your child even climbing the stairs and having to be concerned? Most people can't. Most people shouldn't.

If you have witnessed a seizure, you know how concerning it is, if you haven't...it can not be described. I could try, but it is one of those things you have to experience.

When Bug was having seizures more during the day, any trip out could turn into a learning experience for the people that happened to be there.

A few years ago, we took the kids to the IHOP. They love going there. Bug was playing with the people next to us. They were laughing and smiling and trying to get him to talk. I explained that he didn't and they commented on his beauty. They smiled back and forth, he played peek a boo and we all ate. At the end of the meal, Bug locked up and went into full Tonic Clonic Seizure. They didn't see it, they just saw Glenn taking him out to the car. I gathered Tay and paid the bill. The nice people were left to wonder why we left so suddenly. I saw them watching us leave with puzzled looks on their faces. I waved and they waved back. Bug was in seizure for 3 minutes. Our day was done. We took him home and he slept for 4 hours. It is what it is and people with Epilepsy live everyday like this.

The key is to make people more comfortable with Epilepsy so that daily activities aren't a guessing game. So we aren't afraid of how people will respond if he has an event. Bug is lucky, in a sense, he is so pretty that people are comfortable around him. They are concerned for his well-being because he is easy to fall in love with on first sight. I think they are more willing to accept his Epilepsy and his Autism because of it. People really are more interested in perception than substance. They perceive his beauty as no threat, his epilepsy is therefore, easier to accept. In more than few people, he has helped them see what Epilepsy is NOT and he has helped them embrace it as a medical diagnosis and not something to be feared. And he has done this without words. Simply by being himself. And himself is lovely.

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What a Seizure looks like (Graphic Content Included)

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Seizure Tracker.com

Seizure Tracker.com
Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on SeizureTracker.com include detail graphing capabilities and are easily sharable with caregivers.

Diamond Potential Awareness Award

Diamond Potential Awareness Award
Thank you Holly at Diamond Potential for this award. Awareness leads to understanding and acceptance. And let's face it, we all need to feel accepted for who we are. The battle has just begun!

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