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12.29.2011

"SELF FEEDING"

Cole has been a bit of a "rage-a-holic"...again! I'm pretty sure it's the Keppra...again! I talked to the his Nurse at the Cleveland Clinic to see if they might change his dosage, but the WON'T make any changes for 1 year because he *IS* doing good. I totally understand, but it's getting frustrating with Cole pounding his head on the Kitchen Tile & head butting our noses/faces, biting the counter top, us and anything else he can get his little teeth on & pounding his fist on his head. He does this all-day-long...and no, this is not just a "tantrum" because of his age etc. It really does have a name, "Keppra Rage"...and it is VERY different then what UN-medicated kids go through. (I know there's a lot of parents who know EXACTLY what I'm talking about with the "Keppra Rage"). It's almost like it makes them psychotic...I'm not even kidding! It's so bad that he has to wear his helmet again, that little head of his cost about $300,000 this year, so we are defiantly protecting it.

But, on a good note, Cole has been doing new things & babbling again since he's been on Christmas break. He stopped babbling when he started school and now that he's home he's doing it again. I think pre-school might be too much for his little brain and so he just shuts down. Right now, we are working "self feeding"...here's a video to show you how much fun it is!!!  ...not really though.
(turn off the music at the bottom of the blog first.)

7 comments:

  1. OHHHHH Keppra...I do not envy you. We only lasted 3 weeks on it. Levi didn't stop screaming the entire 3 weeks. I just about lost my mind. Hang in there Mommy (and Daddy)!

    If it is causing headaches...can it be paired with a low dose of motrin? I've heard of doctors doing a psuedo "asprin" therapy for chronic headaches (but using motrin). He is hitting his head for a reason...that is the most likely cause.

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  2. This is just something I'm throwing out there...because before we found out that Levi was having seizures...we actually had started a Gluten Free/Dairy Free diet for the "Autistic Symptoms" and I kid you not...we had amazing results.

    Levi was one of those kids that was constantly hitting his head front back, side...wall, tile, table...whatever was in front of him at the moment. 3 days on a Dairy Free diet...the head banging stopped. Just dairy...no milk, cream, butter, cheese, yogurt...we have replaced everything with dairy/soy free versions.

    I have in the last 4 years...tried cream and butter, since they are the least offensive as far at protein content...but literally within 20 minutes he starts banging his head on the wall. So we have stuck to it. Most people replace with soy products...however, if you guys decide to try it, stear clear of the soy, it's make up is almost identical to dairy and will leave you with the same problems as dairy (if there is a problem). Levi doesn't test allergic to dairy...but it is very clear that it affects him...and likely because he can't fully digest it, which leaves him with this funky partially digested protein in his blood that reeks havoc in his brain.

    I know the problems with keppra, this is just a side note of something to try if things don't improve and you need to try something "out of the box"

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  3. Wow, you are seriously the most patient mom. I am so impressed! I am SO happy he is doing so well. Good Luck with the self feeding.

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  4. I know it's not fun, but you're doing exactly what you need to be doing! Ignoring the negative behavior, and praising for what you want him to be doing. And consistency is key! I'm sure you knew all of that already, I just wanted to tell you what a good job you're doing. Both of you! I miss you guys! Give Cole a HUGE hug for me

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  5. I too, can relate to the Keppra rage. It isn't the same as age related rage. Not at all. Manoah got mean. Super mean. Biting & hitting & charging at us like a bull to hurt us. The head hitting was pretty severe for him as well. But sometimes I wondered if he had a really bad headache as well, but being Non-verbal at the time, he couldn't tell us. Sorry Sarah that, that is becoming a worrisome problem. I know all to well where you are coming from with that & good job with the patience of "Self Feeding" it can be so overwhelming at times being a parent of a Special Needs little guy. Love ya & I pray that whatever it is causing him to be so rageful will go away soon. And if it's the Keppra, I hope the year flies by so that you can start weaning him off it. :)

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  6. Hi Cole mum. On the Kepprage, have you tried vitamin B6 supplementation? it is a known cause for the bad psychiatric side effects of Keppra.

    Good to hear that he is doing better.

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  7. Thanks to all of you for your sweet support! I really appreciate it :)

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