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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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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