Changes

>> Monday, December 12, 2011

Wow, it's been awhile.

Bug has been doing so much better now that we have him off of the Ketogenic diet. THAT was a nightmare. Not because of the food, no, he loved the food, but because of what it did to his system. It made him constipated and THAT makes him seize more...a lot more. He was having 6 - 10 seizures a day. Since we have taken him off the most he has had was 3 (and that is when he is constipated). Not only did he have more seizures, he was hardly smiling, hardly playing and wouldn't make a peep. Now, he jabbers more. He is smiling, he is playing, he is scrounging food and being kinda annoying. But cute. Extremely cute.

His OCD has stepped up some though. Trying to work on that. Currently, he wants to feel the food in his mouth. It's gross. But we have been through it before so, hopefully, we can break him of that habit in less time than it took the first time.

The biggest reason it took me so long to update was his new little sister. She was born November 30th, 3:51am, 7lb 2oz, 19 inches and cute as a button! She looks A LOT like her brother, which means that I project his issues onto her. Can't help it. She makes a sudden move (as infants who can not control their arms and legs often do) and I startle. I watch her sleep and wonder if her eye rolls (during REM) are 'events'. Then I breathe and remember: She is Ava, not Bug. She is her father's daughter. And just to prove it...I have pictures. I will try to post more regularly, but really, that's a crap shoot with a baby. Anyway, the pictures...Enjoy.








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OMG I am in Love...in other words...new medical toy.

>> Friday, September 2, 2011

Mom and Dad needed some supplies. Isn't that ALWAYS how it starts?

So I took them to Walgreen's, which I normally avoid unless I need a specialty item and they needed some specialty items.

While they were looking, I browsed. Cuz, why not? And my attention was pulled to this:

The ChoiceMMed Pulse Oximeter.

This is a very big deal in our house, heck it most households that have children, or adults that have oxygenation problems. In our case, Bug isn't that fragile but occasionally the bad seizures creep in and it's good to know what his Oxygen Saturation level is during and after. Gotta make sure the little monkey boy rebounds.

There were two models, but this one had all we needed and I gladly plucked down the 49.99 and walked out the door with it. The decision factor? This one is yellow. Bug likes yellow.

He had a decent day yesterday, once I gave him some cherries, so I had no need of it.

UNTIL....


This morning. I awoke to a thud and quickly looked up to see Bug was not in bed. Tay was there...but no little man. So, my cat-like reflexes, and 6.5 month pregnant belly, kicked in and I sprinted up the stairs. He was laying on the landing. Peacefully. Odd. So I picked him up (easier said than done), and brought him downstairs to lay with me.

It was 6:47am and his hands and feet were cold so I warmed him up. Just as we were both going back to sleep, he had a sudden Myoclonic jerk. Damn.

And another at 7:30. I gave him his meds at 7:55 and he had another while I was distributing them. Double damn. Bug and I took Tay to school and were back home at 8:20. I placed him on the couch and broke out the Pulse Ox.

Out of the box it had even more appeal. Yellow and small -ish. I installed the batteries and turned it on. It has a lovely LED. I grabbed the Bugster stubby finger and put it on. Didn't register. So I moved it to his middle finger and instantly got a reading. Wee Hoo! Oxygen was 94 and pulse was 124. A little high on the heart rate but he IS having a Myoclonic morning so I should expect something like that. Shouldn't I?

The best part is...he tolerated it. It didn't take long, so he didn't pull and tug at it. I have checked him 4 times since then. Each time, reading was up in 3 seconds. The last one looked like this:


Again, heart rate is elevated, and that is good to know but why is it so high? I will be able to keep a closer eye on him and that peace of mind is worth way more than 50 bucks. Anyone that has a O2 issue, or suspects they do, this is the device for you.

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Hmmm....

>> Friday, August 5, 2011

Very curious...he had a few quick events when he woke up but after his meds at 8:30 he seemed better. He was playful, cognizant, just overall happy.

Now he is asleep in my arms after 2 seizures in 45 minutes. The last one was longish too. We may not have complete seizure control yet but his cognition level is a lot higher.

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August 4, 2011

>> Thursday, August 4, 2011

Today started out less than stellar. Bug had a hard time going to sleep but by 11:30, the battle was over and he slept somewhat soundly all night. When he awoke, he was pensive. Wanted to cuddle and a few minutes later, seizure number 1.

I gave him his medication and he followed number 1 up with numbers 2, 3, 4 and 5. Every 15 minutes. THIS is Bug clustering. To remind everyone (all 1 of you) clustering is one seizure after another, after another. Status is one LONG seizure, or seizures close enough together that the brain has little else it can do but mis-fire. So, I got the Diastat ready but he came out of it.

He came out of it when his meds kicked in. Oh hooray! He has NEVER been able to do that, we have ALWAYS had to administer Diastat. One more vote for the medicine tri-fecta.

Even though it started out crappy, he is his old self. Playing, climbing, smiling and scrounging. It's a far cry from how he was yesterday.

Yesterday just sucked. Plain and simple. He had at least 5 during the day, and that was with me giving him a maintenance dose of Dilantin at 4:00. I still believe he is burning through the medication too rapidly. We will address this with Shari on the 22nd. He will get a blood draw on the 21st and she will have the levels to look through. We have a lot to talk about. Hope she is up for it, because Daddy will be there as well. Tag team. Bwah ha ha.

Yesterday Mid Day
2ml Dilantin

Yesterday PM
5mg Phenobarbital
2ml Dilantin
200mg Lamictal
.5 Clonazepam

Today AM
2.5ml Dilantin
200mg Lamictal
.5 Clonazpepam
800mg Folic Acid (MTHFR helper)

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Later that day...

>> Wednesday, August 3, 2011

he perked up and began doing things we havent't seen in YEARS. Literally years. He ate with a spoon, without being prompted. He smiled all the time and played with his sister. He was steady on his feet and expressed on opinion when I was cleaning the dried blood from his nose (nosebleed earlier that morning because he couldn't breathe well and I had to clean him out). He actually grunted at me. ALL great signs.

I could tell immediately when his medications wore off, he became less active and didn't smile as much. I was worried but also at Taylor's archery class so I just watched him. Sure enough, he siezed. He wanted to cuddle with me, so when I put him on my lap, not even 5 minutes later, he had a Tonic that went slightly Clonic and then IMMEDIATELY out of it. Taylor saw it as she was walking back from shooting her arrows. We were both sad but I knew it was just a tough in his medicines.

We got home, I medicated him again (right on their schedule) and a half hour later, he had another, although milder. And then, no more that night. NO MORE THAT NIGHT.

He had two more this AM (once he burned through his medication) and since he has taken his Lamictal, Dilantin and Clonazepam he hasn't had any. Of course, he is sleeping still, but I would too if I had two, maybe three seizures, in less than 2 hours.

So, I called once his went to sleep and left the message that we wanted to extend the script for the Dilantin, at the full dose (I am doing a lower dose than reccommended but higher than what he is supposed to be on) until we can talk to Shari on the 22nd of this month. I will NOT let this opportinuty to help him go by. Will not. Fingers crossed they call back today and give us the OK.

PM Dosage
2.5ml Dilantin
200mg Lamictal
.5 Clonazepam

AM Dosage
2.5ml Dilantin
200mg Lamictal
.5 Clonazepam

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Yesterday and a Change

>> Tuesday, August 2, 2011

Sucked. He had a total of 5 seizures, most were less than 10 seconds and Tonic. I had hoped that he would sleep it off but he woke up early, came into our room, cuddled with me and had a Tonic/Clonic.

So after some discussion, we decided to try a heavier dose of Dilantin and Lamictal. As of this moment, he is doing really well. Watching TV, responding to Taylor hugging him and just seems to be happier in general.

He is a little wobbly but he thinks it's funny. Good to see.

Now, let's just keep the seizures away.

Meds AM

200 Lamictal
2.5 Dilantin
.5 Clonazepam

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Oh C'mon!

>> Monday, August 1, 2011

Facial tics? Really?

So I look it up and sure enough, Phenobarbital withdrawal (even slowly) can cause facial tics. Nice.

We decided to reduce the Pheno because of his fatigue and lack of moving. His muscles are atrophying, as well losing more weight, he still isn't eating well, he couldn't keep his eyes open and his sleep pattern was incredibly off. As we know, sleep disturbances can increase seizure activity. So we decreased it and upped the Lamictal. Suddenly, we have a smiling boy who can walk down the hall again. Sure, he is still a little trippy dippy but so much better he is eating eggs and hot dogs again.

He has become a guerrilla cuddler, which is interesting. When Nana and Papa leave, later today, I am in real lap trouble. ;)

He has had 4 seizures the last two days and started the first two hours this morning with 2. As far as his seizures go, they aren't bad ones. Tonic lasting less than 30 seconds and he immediately comes out of them. In fact, he had one standing and didn't fall over, he was able to catch himself and continue spinning the stylus for the Doodle Pro.

Hoping that his Lamictal level increases and the seizures decrease again. I'll settle for one a week. Sigh.

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Goal...achieved?

>> Monday, July 25, 2011

FIRST
Update on seizure activity:

1 minor event yesterday and he was awake most of the day. Hooray! He played and cuddled and took a little nap now and then.

Medication AM:

175mg Lamictal
30 Phenobarbital
3.6 ml Dilantin
.50 Clonazapam

Medication PM:
175mg Lmaictal
60 Phenobarbitol
3.6ml Dilantin
.50 Clonazapam

THEN
Update on MTHFR Test

Yep, he has one allele, the one I have: A1298C. I like to share. He will need a Folic Acid and B Vitamin supplement. Will get that from the Hematologist, there is NO WAY he will not be monitored now, especially because:

NOW

We have been trying to start the damn Keotgenic Diet for 7 months and one thing or another stopped us. So, we decided to move forward ourselves. With his last Status they moved us up to starting August 8th. That was too long for us, and too long for Bug. With Daddy's background in chemistry, cookery and being his Father's son I was confident we could get him in Ketosis safely. What I DIDN'T count on was his appetite. He has none. It's the medication and it's breaking my heart. We have, literally, been forced to watch him waste away and it's horrible. BUT Daddy bought some Keto Cal before we left the Hospital and Mommy picked up a bunch of Heavy Cream to help him gain some weight and it's helping.

So, for the last week we have been getting about 700 calories a meal in this child. Most of it liquid, with occasional SPAM, Bacon, Sausage and Eggs. Aside from that...he won't take anything. HOWEVER, he certainly likes the Heavy Cream with some Sugar Free Watermelon flavor mixed in. Hooray! It helps that we have a lot of Sugar Free flavorings because of Daddy's Glucose issues.

He also gets a multivitamin (which will be changed to a prescription as soon as we get his new bloodwork tomorrow) and some Senna to help his intestines.

A few days ago we tested him and he was not quite in Ketosis, this morning I tested him and BAM! Ketosis.

Once we ween him off the Dilantin, we are praying his appetite returns and he can eat more protein and fats without having to involve all this liquid. It's easier on the system if he can take it all in himself and digest it. If he doesn't, well...we will deal with that later. But his renal output is great. His bowel movements still suck but we are working on that and he is way to wobbly from the damn Phenobarbital (he CAN'T walk on his own or even sit up unassisted). But, if this Keto helps, we can reduce the Pheno and go from there.

One fat-drenched day at a time.

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Serious?

>> Friday, July 22, 2011

This child, this beautiful, happy child had three seizures yesterday. Serious. WTF? He is on so many strong medications and we are establishing the Modified Atkins with some Keto in it and STILL...3?

One was confirmed and two were...I THINKS.

Today he has had one. Already. One Tonic that was 5 seconds.

Don't mind saying: this sucks and I am depressed as hell. Time to car shop.

Meds

50 Clonazepam 2x
30 Phenobarbital 2x
150mg Lamictal 2x
3.6 ml Dilantin 2x

And then last night we stepped it up:

60 Phenobarbital
175Mg Lamictal

And STILL a seizure this morning an hour after:

50 Clonazepam
60 Phenobarbital
175mg Lamictal
3.6 Dilantin

He is sleeping now. I'm not. I am watching him and being pissed that I haven't received a call back from the Neuro's office. Really? How difficult is it to just give me the damn MTHFR results? Screaming seems so...not useful.

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Another Status

>> Wednesday, July 13, 2011

We had suspected Bug was in Status for a few weeks, but after a call to the Head Doctor, it was suggested he was just getting used to the medication increase. I knew better but still...you have to respect your Doctor and give them the benefit of over a decade of schooling and twice as much practical experience. But, hey, they don't know my child like I do.

So, we waited. In the meantime, I did more research. I have, somewhat recently, been told I have a genetic mutation called MTHFR. Not a really big deal since I have only ONE mutation HOWEVER, I learned that two mutations, in different areas, can cause a lot of the problems we have seen in our family lately. Some minor issues,and some bigger issues, but all possibly explained by the lack of treatment over time in even ONE mutation. I decided to get a Hematologist involved. Easier said than done. I called PCMC Hematology and was informed I needed a referral. We don't just allow 'anyone' to get an appointment. M'kay. NOT what it says on your website but I have gotten my back up and then sucked it up and gotten what he needed so...I'll play along.

In the meantime, we took Bug to the ER in American Fork for his recently chronic constipation, because Primary Children's resources are better used elsewhere (no joke, even though I said I think he is in Status). They 'cleaned him out' and we headed home. I asked, and received, a referral to the PCMC Hematology Department. And the next day I called.

And the next day I was told that the Doctor HIMSELF had to call. I blanched and informed the 'lady' that I wasn't told that and I have the prescription for a Hematologist consult in my hand, my insurance doesn't require the referral but I got one and he needs it. She said: I don't know who told you that but have his Primary Care Physician call. It's not a big deal. I laughed: Oh yes it is. You see, I love his PCP but his staff...well...anytime I ask for a referral they give me grief. Took me 30 minutes of talking and repeating to get the referral to the ENT. And THIS one is just to rule out a genetic marker. To which I heard: Well, why do you think he needs an Oncologist anyway? Seriously? Did I not SAY HEMATOLOGIST a few times? I told her about my test being positive and she said: I HAVE NEVER HEARD OF THAT. So I hung up.

I called his PCP, who was on vacation, and they gave me an appointment for another Doc in his office. We went in and I am glad to say, we now have a new PCP. He knew all about MTHFR and was fascinated with his Epilepsy. I may be in love. He called the referral in and agreed Bug was most likely in Status. SO...up to PCMC.

I called Daddy en route and he wanted to know if he should book a flight, since he was in San Francisco. With the speed at which PCMC moves with Bug, I told him to wait. I was correct. I told the Doctor: I think he is in Status and Ativan DOES NOT WORK. He smiled and said: OK, I will tell the Neuro's but it IS their call. And then, I said for the first time that trip: Just wanted to let you know, the *Neurologist* needs to TELL me about the treatment plan and not just pawn it off on you. YOU should not have to deal with me and what I know does and does not work. I appreciate you seeing us so rapidly. He smiled and said: I understand and thank you for understanding my position in this. I LOVE the ER Docs and the Pediatricians there. It took several hours to get him hooked to an EEG, in the sleep lab, since all the portables where being used, and IMMEDIATELY we knew he was in Status. BOTH of the tech's knew Bug. Nice.

I literally looked at the EEG for 10 seconds and told Bug: Looks like you bought the golden ticket for at least one night's stay.

He was disconnected from the EEG (leads still attached) and we went back to the ER. The nurse walked in with....Ativan. I looked at her and said: Love ya, don't give him that. It is a waste of time. Repeating: NOT aimed at you, tell the Neurologist to come talk to me first. She smiled and said: Will do.

A little bit later, in walks one of the Neuro's. We knew each other. Pleasantries were exchanged and then I reminded her that Ativan does not work. She had other ideas. She informed me that, "in his medical record", it states it has. I countered: "Uh, no it doesn't. It says PHENOBARBITAL does." I had received his ENTIRE medical record a few days prior and had been reading through it all just that morning...so...bring it on. She reiterated that in her memory Ativan worked. Again, I said: "Ativan is ALWAYS administered and always cleans it up 'a little' but only PHENOBARBITAL brings him out". She said: Well, let's try it.

I gave in with a shrug and a giggle, because yelling would upset everyone, and he was given Ativan. It made him loopy. It DID NOT bring him out. A little while later, they gave him Phenobarbital and moved him into a room.

At least it took less than 7 hours.

And we are back in the NTU.

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Backslide

>> Wednesday, June 8, 2011

Not sure these news meds are the key to anything great.

He is making messes again with his food, wandering around with it, instead of sitting in his chair. He is not talking much, hardly at all in fact. He is next to impossible to dress without pinning him to the floor and getting him in the car has pulled so many muscles in my body I can feel every single one of them screaming for Tiger Balm. AND we are wondering, again, if he can hear properly. The frustration factor is through the roof.

He is still having breakthrough seizures almost twice a day. We did have two days of no seizures but as of 30 minutes ago, the record was broken. Massive Tonic seizure. He took a long time to come out of it but he is good now. Playing loudly with his toy and watching TV intermittently. Good to see him smiling after that big of an event.

And top it off with Tay making an inappropriate comment about an infant having a seizure and my nerves are RAW. Very much so. Hopefully, we will turn a corner soon and I can get Tay into a summer program. She needs something social and I need a break.

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What is and what will be.

>> Thursday, May 26, 2011

All these long months have merged into a routine, into the same long days repeating themselves. Seizure after seizure, phone calls to Doctors and Nurses and appointments and disappointments. The isolation and the resentment is pervasive, it is always there. I am constantly being reminded at the park, at the grocery store, watching other children play and taking his sister to her first party. Something, he may never do. And the sadness at all things he will, most likely, never do, takes over and the melancholy achieves, what feels like a strangle hold.

Like most Mother's of a Special Needs child, I resent hearing complaints about normal childhood things. I hear a Mother lament about her child's vomiting and I think: Ha! Thats an easy one. But it isn't, not for that Mom, it is not something that she was expecting at that moment. And although I know of NO Special Needs Mom that doesn't expect a pointless round of mystery illness on a daily basis, I have to remind myself that it's not a competition.

I wonder, will he ever play ball outside with his friend? Or will he ever have friends? Will he ride a bike and skin his knee? What will his life hold for him? Will he ever know how much I have ached for him, how much I have fought for him, the countless hours I have laid awake listening to him breathe? Will he ever say: I love you Mom? And regular Mom's think these things too. Only their answers are usually set...the answers to those questions are almost always yes. And I must reconcile this. I must stop thinking that my son deserves any more attention than any other child based on our foray's into society. No one will treat him differently unless I make them, and how can I make anyone do anything they don't want to do? Some people just can not think of anything, or anyone that they consider to be beneath them, or that they consider to be abnormal, or that is not their own offspring. It hurts more that he is overlooked, and stared at, and laughed at, and completely ignored. It hurts my heart more than I have ever been hurt before.

And I thank all that is that he does not realize that there is a difference.



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The Status

>> Sunday, March 20, 2011

We have been in the hospital with Bug for six days. Six long days, almost all of which he has slept through.

He was still acting odd on Monday and I told Glenn he had to go to the ER, that he was in Status again. So we went and he was. Damn it.

They first tried to give him Ativan without an EEG. I said: try again. Get the EEG first. They agreed and that's how we found out he was in Status. Thanks Mom for being so aggressive.

So, they gave him Ativan, and he got sleepy but still was in Status. So another round of Ativan and he was awake and smiling. Still in Status but happier. Queue Depakote in higher dosages and he slept.

I was told it was NOT the Depakote making him sleepy. That it was the seizures. Uh huh. He wasnt this sleepy before we calmed his brain down.

Then they gave him pheno, and then another pheno and he came out of status. But he did not wake up.

And I let them do what they wanted to do until they deviated from the agreed upon plan. Then, we had a talk. The thing is this: with Bug, no one else knows more than I do at this point in time. He has no diagnosis, he has an abnormal EEG and is on some pretty strong meds. But who knows what else may be going on other than seizures? But, they see only the seizures. And I understand that, I live with the T/C's, thanks, I get it. But what they don't know is how happy this child is and if they take that away from us, well, it won't be pretty.

Kris called a few days ago and told me that she received a call asking her to confirm or deny her appointment on Tuesday, with Dr. Filloux. We reasoned that if I called the next morning I might be able to secure an earlier appointment since someone may have canceled that night. Sure enough, I called, and he got an appointment for March 30th. Hoorah! 5 weeks earlier. I am so excited.

Now if he will just wake up.

Mostly, I want him to wake up.

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We got Myoclonics wholesale!

>> Thursday, March 10, 2011

What a crappy 24 hours. Poor Bug is just having a lot of myoclonic issues. I keep thinking I will video them so people can understand or so the Doctor can see what he has been doing but I can't bring myself to pick up the camera.

He had two T/C's and myoclonics too numerous to count. His meds seem to help for a few hours but then he goes right back at it. He is eating now though, and watching TV and dancing so he must not feel too horrible.

I have been so worried about him all day but he isn't. He will lay down for a little bit and then jump back up and play. He really is my hero. Nothing stops him. I just adore the boy.

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A big deal at our house

>> Tuesday, March 8, 2011

Taylor had cheese pizza for lunch. She had some left over and we kept it for Bug. He had the pizza and I gave him a bit of Cheese Chex Mix. Apparently I didn't give him enough because he got out of his chair, walked over to the cupboard and motioned for the bag. I got the bag down, showed him what was in it, he reached into the bag, grabbed a handful AND...

Took it back to his seat and put it on his plate.


THIS is a really big deal. I am thrilled. Way to go Bug.

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The Bane of Beauty

Bug is beautiful. He really is a very pretty child and people comment on it. We agree, he is lovely. The problem is that he also has intense seizures and severe cognitive delays. But he is beautiful.

I have said it before and I will say it again: his beauty is a hindrance. People, including Doctors, see him and read his story and meet him and shrug it off. They shrug off the issues he has and they see his smile and his big blue eyes. They read the words but they insert their own version of reality. Even other special needs Moms talk to him like he should be answering them. They say things like: you know what I am saying, don't you? And they smile at him. Of course, he smiles back, but that does NOT mean he understood. I have been told that I just need to be consistent. Wow. Why didn't I think of that? Just be consistent. That eluded me.

And how much more consistent do I need to be when he sneaks into the closet to play with his feces? That is deception, and it is a sign of intelligence HOWEVER, the lack of 'ick' denotes a temporal lobe issue. The inability to tell good from bad, ick from awww, that's executive function, and that has not fully developed in him. He hasn't played with his feces in over a year so we hope he is done with that and his temporal lobe is developing nicely, but really, at any point, he could start up again. And THAT has NOTHING to do with bad parenting.

No, our society has equated beauty to perfection. And those two words are extremely dangerous things to put together. Bug is beautiful, but he is not perfect, and we do our best to help him and to teach him. He DOES have fairly severe problems, even people with Epilepsy say he has it badly and he does, but we can't think of it like that. He is a happy child and he does not always understand what is going on. But he does know that we love him and that we will try to protect him while letting him grow his independence. If one more woman says: Oh he knows. They will get an earful. And I will let THEM spend 24 x 7 with him. They wouldn't last a day alone with him. So, back off the judgments, he's my child and I know him better than you do. You can't say: God gave him you for a reason and then question how I raise him. Apparently, God trusted me, you should, unless you know better.

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Got one...sort of.

>> Sunday, February 27, 2011

Bug got to bed late last night because I was at the Crop Because You Care event (which was awesome!) and fell asleep right around 11PM. Shortly after, the Emfit Remote went off...I ran upstairs and he was breathing heavy and drooling...no convulsions but the drooling is a sure sign. It was wonderful to be able to comfort him when he came out of it with his now standard: Mama. He smiled, I smiled and he went back to sleep. I went immediately to the computer to view the video and there wasn't any...the damn camera was offline. Argh. I fixed it and waited. But the rest of the night was fairly quiet.

Except for 3am when the alarm went off again: he was out of bed. I found him on the stairs VERY smelly. Changed the diaper, carried him to bed and he slept soundly until he and Tay (who has been sleeping next to him so Nana and Papa can have her room) started pushing him toward the side of the bed. He pushed her back, the alarm went off and I watched them struggle. Finally, Bug got her over enough to lay down and after a few minutes, she moved over more. They slept for another hour before they were up for the day.

I was excited that the Emfit caught his seizure, not happy the camera was offline but I was there to comfort him and make sure he comes around so it was still pretty perfect.

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Another night, another...nothing.

>> Tuesday, February 22, 2011

He slept well and no alarms. Well, in the morning it did, but if you saw him try to wake up you would know why. He likes to stretch and pull the covers over his head. THIS action mimics a Tonic seizure. So, I am glad it went off, I had to look closely and get Glenn in on it to determine if it was or was not an event. Thank you cameras, and we concluded it wasn't.

Now, you may ask, How come you don't know?

Good question and let me 'splain.

Bug used to have 3+ minute T/C's...no doubting that business. Scary, lousy, and stupid, stupid seizures. Lately he has been having more Drops and Tonics. The Drops are easy to tell as well, he suddenly stops, stares and then collapses. Thankfully, he is sitting down more than standing when this happens. But the Tonics, those can be harder to determine if they are short and he doesn't moan or scream. We are grateful they are smaller and harder to detect. With Bug, his Tonic begins with his left hand tightening up and raising above his head, then his whole body goes rigid and then he relaxes. It's very fast now, less than 20 seconds usually and not too scary just stupid stupid. He can have 2 or 3 a night and then a drop during the day sometimes. With camera's in his favorite rooms we will know EXACTLY how many he has that we miss. But it is still difficult to tell when he is having a Tonic while asleep. So we now use the Emfit to tell us 'something' happened and the camera to attempt to verify.

Did that help?

He is asleep on our bed now, climbed out of his at 8:30am (setting off the alarm within 4 seconds) or so and stumbled, because he was still tired, into our room. I made the bed and placed him on it with his SpongeBob pillow (recently rediscovered) and a blanket and within 5 minutes he was asleep, with blanket pulled over his head.

Hopefully he can make it to school today. It's been a week and he is talking so much I want more witnesses. And, of course, speech therapy to assist him further along.

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You said what?

>> Monday, February 21, 2011

Wow, what a difference a few days makes. Bug LOVES sleeping in his own room. We tidied it up some more, made his favorite toys easier to get to, installed curtains (finally) and mounted the camera above the bed. Oh, and of course put the Emfit in place.

The Emfit was easy peasy to set up. And it works beautifully. I will do a video about it, I SWEAR I will. And having the camera above the bed is fantastic to help verify he did have a seizure and wasn't just sleeping on his knees. When he does that, and he does it several times a night, his chest is off the mat and it sends us an alert. I assume that it's the lack of sensing movement (breathing is a minor movement) since his chest is off the bed but his weight is still distributed, albeit unevenly.

Even when he can get out of bed, he doesn't. THIS is amazing to Glenn and I. The first night he DID get out of bed and the alarm sounded. Totally cool.

When Bug was a toddler he WOULD NOT sleep alone. One of us had to sleep by him and then, if we left, he would wake up and follow us a short time later. One of us would take him back to bed and lay with him until he fell asleep and then the process would start all over again. So, on nights he was in this cycle, we would just let him sleep on the floor in our room. I got SO much grief from people who do not know, about this. Drove me insane and I wanted to have a sleep over and see how they do with 4 hours of sleep a night. The people that were there remember this, and they are thrilled for him now. Some kids, just need more time.

And then Tay started doing it because she wanted to be near him. We tried putting them in his bed together and she kept waking him up. We slept that way for only a few short months before he started seizing every night, and when that happened, we were more than Okay with him sleeping by us. That was 4 years ago.

So, the first night he was away from us was long but satisfying. The Emfit went off 5 times, and we checked the camera recording. None of them were seizures. Rats. And yet, hooray! The next night, Tay slept with him because Megan was visiting and it only went off 3 times during the night, all of them were Tay. Oy. we turned the sensitivity down and that night, no alarms. Of course, I still woke up 3 times to check on him, but I didn't have to go upstairs, I connected to the camera from my iPod and went back to sleep. IT's FREAKING AWESOME!

He now enjoys the crap out of his room. He will play in it, and lay down on the bed randomly. I think he is enjoying the freedom.

Oddly, or should I say, wonderfully, we have not seen any seizures. So, either the mat is not picking them up because they are too light, or he is not having them. We watched him go to sleep each night for at least an hour. One: to make sure he stays in bed and Two: to see if he seizes. And he didn't. If he doesn't seize within an hour, he will not seize until morning. Usually starting between 4 and 7. The camera has not picked up anything that we said: Yep, that's a seizure.

And he has been extremely energetic and very talkative! He will bring his toy over and shove it in our faces and say: Ba,ba...ba,ba...ba...doh. We repeat: Ball and he smiles. He calls me Mom, Ma and Mommy and calls Daddy Papa, or Pa. It's amazing to see and hear. I can say: Maybe he is sleeping better in his bed, but why would that make such a HUGE difference? I dunno, but I am going to enjoy this lull and this energy.

Oh, and he was spinning yesterday. For those of you who knew Bug at 3 years old you will know why THIS is a big deal. He used to love to spin himself, it was one of things the Doc told us led to the Autism diagnosis. He loved for his cousin, Amber. to grab him by the hands and spin him. It was so much fun to watch. And then he stopped doing it when the darn seizures started every night. And now, he's doing it again. Wow.

Just Wow.

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Naked: Back on the Menu

>> Thursday, February 17, 2011

Been lax, I know. But, no one has complained so...

In keeping with the: Getting the children in their own rooms endeavor, I bought Bug an Emfit and Glenn bought a Camera System. It was a little competition to see who could get the coolest device so we could cuddle again. It was a tie.

The Emfit Movement Monitor is scheduled to be here today, but with the storm last night, I would not be surprised if it was rescheduled. The Emfit fits under the mattress and monitors purposeful movements. It's sensitivity can detect any 'unexpected anomaly' that is movement related. Such as muscle spasms that are likely to be seizures, and of course, getting out of bed. When those movements and activities are 'out of normal range' and likely to be seizures, we will be notified via a remote in our room. Wee Hoo...we are thrilled.

When Bug started having multiple seizures at night, he started sleeping next to us. For 4 years he has slept next to us, and for 4 years, Tay has demanded to sleep next to him. But now, the rules have changed. Tay says with the camera she will sleep in her room. Uh Huh. We'll see.

But wait...there's more...

It's not enough to just KNOW he is seizing at night, we need to see what he is doing as well. He is having Myoclonic's and Drop's occasionally and he is very active, we can not follow him around all the time. Although, we have. So Glenn picked up the Logitech Alert DIY Digital Video System .

This system is slick. If you can plug in a lamp and install software, then you can set this up. The Cameras plug into a power brick via a Cat5 cable, and the power brick plugs into the wall socket. The base unit plugs into a wall socket AND a network jack. Then, install the software and that's it. TADA! It will record as much video as you want it to record. THIS could be helpful when showing a Doctor what seizures the patient is having. I can't tell you how crappy it is to not be believed until they see it for themselves. I can view the video feed on my laptop, phone and iPod Touch. Which sends this techie into a naked happy dance on the table. The coolness of this is practically particle splitting with no big boom cool.

I was so impressed with the system, we are buying two more camera's today.

We have big hope for sleeping alone in a room again, all the while knowing and seeing that Bug is safe. Our lives, have just gotten a little more secure. Thank you Emfit and thank you Logitech. Although I doubt that Logitech thought about Bug when they invented this, but maybe I will let them know.

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February 3, 2011

>> Thursday, February 3, 2011

Bug has been ill...again. And if one more person tells me: He is sick a lot, I may have to slap them. I KNOW he is. He has been to the Doctor that can tell me how his immune system is and they say it is fine. He likes to put things in his mouth, all the time, and anything that will fit. Gee...I wonder if that is why.

He doesn't seize when he IS sick, but when he is getting sick.

This time, he had a few bad ones but mostly he had Myoclonics. Quite a few this morning. About one every ten minutes. He had been holding the pills in his mouth and letting them melt, instead of swallowing them. He's getting awfully good at that.

But what concerns me the most is the weight loss. Sure, he is getting taller, but he is so thin. I know that all 8 year old's go through this but it's hard when they can't say: Mom, I'm FINE! No, I just have to watch what he eats and THAT he eats. At this point he can eat Cheetos and Hamburgers all day everyday, as long as he eats. And he has been wobbly and clumsy. Could also be his sudden growth spurt. So hard to know.

AND he is losing his two front teeth! This is a Holy Crap moment for me. For Tay too...she keeps checking her teeth and asking if they are loose. It's super cute.

In the middle of all this sickness, Bug woke up at 4am one morning and said: Mom. Just Mom. Clear as day, so clear I thought it was Tay but it wasn't. It was my little boy making sure Mom was still there.

How can I be away from him when his Emfit gets delivered? This may be tougher than I thought.

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Purple Day

>> Thursday, January 27, 2011

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January 3, 2011

>> Monday, January 3, 2011

Bug had a good Christmas. His seizures were few but he does have the flu. He seems to be interested in playing independently and has been watching TV. When he wakes up he likes to 'talk' but is pretty quiet most of the time. Hopefully it's the illnesses. He is adorable, even when snotty.

When he feels well, he smiles and has that look back. That look he had when he was really young, that says: I know something you don't know. It's lovely to have back.

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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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