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Tuesday, April 20, 2010

Seizureville

EEG is back and it's seizures.

I knew it, though. I wasn't in denial. When I first saw the jerks months and months ago, they didn't look like any definition of a seizure that I had ever known so I thought maybe it could be something else. Then an OT suggested that it could be seizures. Then began my journey into Seizureville - an unfun, unproductive village of trial and error, guessing games, and puzzles that may or may not fit together.

But it's alright. I mean I'd rather him not have them, of course, but knowing is better than guessing. Since the minute I found out there could be a possibility of seizures, I hit the books (actually the virtual books otherwise known as the internet). I read blogs about kids with seizure disorders. I watched Youtube videos of possible seizure types. I just attended an online seminar about alternatives for treating epilepsy. I prepared ahead of time so I wouldn't be devastated. We're familiar with devastation so I try my best to minimize it whenever possible.

So I welcomed the news because after three weeks post 24 hour EEG, I was finally ready for an answer. It was more like a confirmation of what I already knew.

In trying to sort out the details of what is pertinent information and what are just minor filler details - here's the long and short of it:

Christian's EEG showed a pattern of hypsarrythmia. This is indicative of Infantile Spasms (IS). Devastating, right? Well, it's devastating in healthy children because it signifies damage that may or may not be known to the parents. In Christian, we already know there's damage. It is strange because Infantile Spasms are usually associated with West's Syndrome and children grow out of them by the age of 2 years old. I'm not sure either of these will be the case with Christian. It is atypical for victims of hypoxia to have Infantile Spasms, but just recently there have been reports of it. It is also strange because Christian doesn't physically present with the traditional jerks of IS.

I've had my issues with Keppra, a seizure medication Christian's been on since the accident, at first for prevention. I've never felt it did anything for him. So it was a blessing in disguise that it took so long for the EEG results to come back. If I had received the results right away, I may have been too chicken to reduce and eliminate his Keppra dosage. So I've been reducing for about four weeks. As soon as I reduced the first time, one of Christian's most pronounced episodes, which happens while waking, went away. It doesn't surprise me, though. Christian has always reacted differently than expected to the medications he was given since he was in the PICU and sedated by Versed. It never went the way is was expected.

There are seizure meds that are specific to IS. One is Vigabatrin that families used to buy in Mexico and Canada to treat IS, but it just got approved in the US this year. It's supposed to be good and  the neuro strongly recommended this medication, but one of the side effects is loss of vision. Like we really need that. There is also a series of shots, but the neuro said he didn't think that would be effective. And there's the Ketogenic Diet, which I've been interested in trying for Christian because it's very easy since he's tube fed and it's med free. I'm not against medication...that works. I'm very against medication that does not work.

So there you have it. This is our next battle but I'm taking it slowly because I'm not about to load my child up with every seizure medication known to man. We're going to find a way to fight this and we will prevail. I just have to pay very close attention to Christian's reactions to new meds and all of the alternatives available in order to make sure we can give him the best possible plan of action.

My thoughts:

I have an odd feeling of...peace (is that the right word?) about the whole thing. I finally have an answer. I finally have truth and that always sets you free. The truth is he's have seizures. Now we are free from trying to figure out what it is and now we can formulate a plan of action.

I also am reminded (which I needed) just how much of a fighter Christian is. I am reminded that despite the massive damage that occurred, he's trying with all of his might to rise from the ashes. I've been frustrated for the last month or so with the pace of this journey and slow it can be, sometimes so slow it feels like we're parked. I am so proud of him for continuing to move forward, some days we're parked, but others we're moving. But, always, always moving forward.

I am hopeful. The way I look at it is that even though Christian has been suffering through these spasms for the last six months, he has still made progress! That is amazing to me!

Just think of the possibilities after we treat this thing!

Will this be hard to treat? Maybe. But something happens to this Mama Bear when something or someone challenges her Baby Bear Cubs - I get defiant and I wanna maul that something or someone.

Dear Seizureville,

My Bear Cub and I will not be staying.

-Mama Bear

9 comments:

Rochelle said...

You go Mama Bear! We're praying for a complete healing of all the seizure activity for Christian and continued improvement.

Lucy and Ethel said...

Shauna (Mama Bear!) - would you please email me at jeffreyb@skybest.com?

Thanks!

Helen/'Lucy'

Deana said...

Hi Shauna,

I'm Jenny Fischer's friend...and my son had Infantile Spasms for a few years when he was a baby...till about 3 years old.

Ijust wanted to let you know we have been on vigabatrin for 5 years now, and Max has had no damage to his eyes. It is the first line of treatment the world over for infantile spasms. The ACTH injections have a lot of side-effects, one is lowered immunity, which Max already has, so we never tried them. (Plus they are CRAZY expensive!)

After starting the vigabatrin, Max's seizures were under control in a week.

We have also heard good things about the keto diet, but because Max has a metabolic disease, in which he has to already have a special diet, we can't do that.

Best of luck with it all.

http://kingofthewildthings.blogspot.com

The Lesters said...

Glad you got your answers. Will be praying that God leads you to the best treatment. My son will also be having an EEG soon.

bluee19 said...

Make sure you join the Ketogenic group on Yahoo Groups. The folks over there have a wealth of information. My daughter has been on the keto diet for three months and it has helped control her seizures. She drinks the ketocal formula but you can also make meals. The keto diet is better than taking meds. My daughter is more alert and vocal compared to taking Keppra. When we were weaning off Keppra while on the keto diet. She would have drop seizures. I am so gald she is med free. If you have any questions, you can email me. I would be happy to provide any info that I know.
Blessings,
Nicole

HeatherS said...

Dear Mama Bear!

So sorry you are going through this. I understand the sense of peace....it's better to know what you are up against than to guess and not have support.

Samantha had spasms and we used Vigabotrin. It worked for us and the side effects were minimal.

Good luck- rooting for you and your beautiful boy.

XO-
Heather and Samantha

Alicia said...

What a blessing from God that you are at peace with this news. You have the right attitude, Shauna! I guess I need to take some lessons from you on how to handle these kinds of things!

Fight the good fight and you and Christian, with God's help, will conquer the seizures!

Mom-of-Five said...

We've dealt with seizures from Samuel's near drowning for years. In the end, we have been able to control them with small doses of Keppra and - you would never guess - vitamin D. Within 3 days of putting Samuel on 5000 IU's of vitamin D3 each day and then making sure to keep his intake of sorbitol limites (there is a lot in liquid Keppra), Samuel's seizures were under contol. So, watch for the little things. You never know what might help.

Teresa

Michele said...

Hi - I'm also Jenny Fischer's friend and my daughter had a brain injury from menengitis at six weeks old. She too had infantile spasms and we had the option of vigabatrin or ACTH. We were told ACTH could be the first try and see what happens. So four weeks after starting the ACTH my daughter was seizure free and still is two years later. We didn't see any side effects from the ACTH other than puffiness and being irritable, but as soon as the injections were done, we were done. Just thought I would pass along our experience. Please feel free to e-mail anytime!
-Michele

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