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Raising Special Needs Kids Raising Special Needs Kids

Something I am a bit concerned

Posted by on Jan. 12, 2013 at 5:51 AM
  • 16 Replies
I asked this question in my M.O.M. group but this is what I wrote for them:

Do any of your Kids have a twitch that effects their arms, shoulders and head/face? Austin is 2 with epilepsy (three different kinds of seizures) but How his seizures are they change how they effect him as he grows older. One of his meds also kind of hides some of the effects of his seizures and helps seizures. But he has been very twitchy later. Wondering if its seizures changing It's appearance? Anyone have this when Kids were young? One seizure type is infantile spasms, complex partials and one other type We havent figured out.
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by on Jan. 12, 2013 at 5:51 AM
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Replies (1-10):
darbyakeep45
by Darby on Jan. 12, 2013 at 7:09 AM

I honestly don't know Amber:(  Hugs and bump!

sammygrl77
by on Jan. 12, 2013 at 10:18 AM
I have no experience with this, so bump
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mandee1503
by Amanda on Jan. 12, 2013 at 10:23 AM
Idk. Jacob still only has absence and they are breaking through the keppra more often but have no experience with them changing how they present.
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gma12.1
by on Jan. 12, 2013 at 2:21 PM

 

Quoting mandee1503:

Idk. Jacob still only has absence and they are breaking through the keppra more often but have no experience with them changing how they present.

 Has the Dr done the keppra blood levels on him? I know that is a dumb ? but Lina went thru a phase where she kept having break thru seizures several different kinds. Every time she has a seizure no matter what kind I tell the Dr and he decides what he wants to do. Sometimes he has just said lets wait and see if she has anymore in ___ time frame. Then a couple of times he ordered a blood test then when the results came back he increased her keppra.

My Second time around & loving it!
boy n girl     toddler girlLina

The Twins

gma12.1
by on Jan. 12, 2013 at 2:30 PM
1 mom liked this

 IDK about the twitching but if it is a side effect of the medication then maybe he needs to be changed to something different. Have you told the Dr? If he/she isn't too concerned I would just keep telling them that it worries me and what could be causing this? It could be a change in how the seizures present themselves, or it could be that he is having a different kind of seizure. To find out what to call Lina's seizures I googled seizures and got a list of what they are called and what the most common symptoms are for each one. I let the Dr know after every seizure that Lina has even if they are just the absence ones. At first I thought he would get annoyed with me but then thinking about it I didn't care because she was having them & I wanted him to know so that it was in her records and he could make his decisions.

My Second time around & loving it!
boy n girl     toddler girlLina

The Twins

mandee1503
by Amanda on Jan. 12, 2013 at 3:17 PM
No. But Jacob is so small he can only have up to 3 ml 2x a day. Right now he takes 1ml. I can up if the seizures become to frequent again. Right now I'm only seeing about 2 a week.

Quoting gma12.1:

 


Quoting mandee1503:

Idk. Jacob still only has absence and they are breaking through the keppra more often but have no experience with them changing how they present.

 Has the Dr done the keppra blood levels on him? I know that is a dumb ? but Lina went thru a phase where she kept having break thru seizures several different kinds. Every time she has a seizure no matter what kind I tell the Dr and he decides what he wants to do. Sometimes he has just said lets wait and see if she has anymore in ___ time frame. Then a couple of times he ordered a blood test then when the results came back he increased her keppra.

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lifeisajoy
by on Jan. 12, 2013 at 10:17 PM
1 mom liked this

make sure levels checked--also document all and report and also my son is doing that and he had febrile seizures but that was over 11 years ago-he does not have seizures-they did a cat scan but came back good-now he is being referred to a neurologist-well you know my son has cerebral palsy-he started this about 6 months ago and still trying to get it figured out-  



Mipsy
by Chelle on Jan. 13, 2013 at 12:33 AM

 JW, how big is Jacob? I am sure he is much smaller than Tyler, but Tyler was allowed to go up to 6ml twice a day at 40lbs, he is almost 43lbs now and is titrating up to 8ml twice a day. We are titrating up again cuz his absence seizures are breaking through crazily.

Quoting mandee1503:

No. But Jacob is so small he can only have up to 3 ml 2x a day. Right now he takes 1ml. I can up if the seizures become to frequent again. Right now I'm only seeing about 2 a week.

Quoting gma12.1:

 


Quoting mandee1503:

Idk. Jacob still only has absence and they are breaking through the keppra more often but have no experience with them changing how they present.

 Has the Dr done the keppra blood levels on him? I know that is a dumb ? but Lina went thru a phase where she kept having break thru seizures several different kinds. Every time she has a seizure no matter what kind I tell the Dr and he decides what he wants to do. Sometimes he has just said lets wait and see if she has anymore in ___ time frame. Then a couple of times he ordered a blood test then when the results came back he increased her keppra.

 

mandee1503
by Amanda on Jan. 13, 2013 at 12:35 AM
He's barely breaking the scale at 20 pounds.

Quoting Mipsy:

 JW, how big is Jacob? I am sure he is much smaller than Tyler, but Tyler was allowed to go up to 6ml twice a day at 40lbs, he is almost 43lbs now and is titrating up to 8ml twice a day. We are titrating up again cuz his absence seizures are breaking through crazily.


Quoting mandee1503:

No. But Jacob is so small he can only have up to 3 ml 2x a day. Right now he takes 1ml. I can up if the seizures become to frequent again. Right now I'm only seeing about 2 a week.


Quoting gma12.1:


 



Quoting mandee1503:

Idk. Jacob still only has absence and they are breaking through the keppra more often but have no experience with them changing how they present.


 Has the Dr done the keppra blood levels on him? I know that is a dumb ? but Lina went thru a phase where she kept having break thru seizures several different kinds. Every time she has a seizure no matter what kind I tell the Dr and he decides what he wants to do. Sometimes he has just said lets wait and see if she has anymore in ___ time frame. Then a couple of times he ordered a blood test then when the results came back he increased her keppra.


 

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Mipsy
by Chelle on Jan. 13, 2013 at 12:40 AM

 Awww I knew he was tiny but I didn't realize he was that tiny!

Quoting mandee1503:

He's barely breaking the scale at 20 pounds.

Quoting Mipsy:

 JW, how big is Jacob? I am sure he is much smaller than Tyler, but Tyler was allowed to go up to 6ml twice a day at 40lbs, he is almost 43lbs now and is titrating up to 8ml twice a day. We are titrating up again cuz his absence seizures are breaking through crazily.


Quoting mandee1503:

No. But Jacob is so small he can only have up to 3 ml 2x a day. Right now he takes 1ml. I can up if the seizures become to frequent again. Right now I'm only seeing about 2 a week.


Quoting gma12.1:


 



Quoting mandee1503:

Idk. Jacob still only has absence and they are breaking through the keppra more often but have no experience with them changing how they present.


 Has the Dr done the keppra blood levels on him? I know that is a dumb ? but Lina went thru a phase where she kept having break thru seizures several different kinds. Every time she has a seizure no matter what kind I tell the Dr and he decides what he wants to do. Sometimes he has just said lets wait and see if she has anymore in ___ time frame. Then a couple of times he ordered a blood test then when the results came back he increased her keppra.


 

 

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