Adding epilepsy to ASD at age 20. Anyone use Keppra?

sharadoc

Visit WDW since '86, driving since '94.
Joined
May 6, 2008
Messages
8,058
Hi DS started having seizures right after turning 20 in May. We're doing tests, but in the meantime, Dr. gave us Keppra (generic) liquid. Just curious if anyone, or your child, has used it and how the side effects were. DS is not too verbal so he won't complain.

We're relieved there's a liquid version since he doesn't take pills. Any and all info much appreciated.

TIA
 
I took it after seizures mysteriously started in my early 20s as well. Didn't last long on it, it made me really sick with side effects (dizzy, migraines, etc) then found out I developed an allergic like reaction to it and had to stop it (but my body reacts weirdly to things as it is b/c of immunity issues found later in life). I hope this works for your DS and I hope they are able to find the source of his seizures and get them controlled. I have had no such luck yet.
 
My daughter is on keppra, works great and no side effects.problem is everyone responds so differently to meds, you could ask 100 people and get 100 different responses
 
My DH has been taking Keppra for 20 years and my youngest son has been taking it for about 13 years. DH has never had problems with it. DS takes a high dose, plus 2 other seizure meds, so he has some issues with being off-balance sometimes.
It's been a balancing act to find the exact right dosage that controls the seizures and still allows him normal mobility.
 

A common side effect of Keppra is physical aggression. My son took Keppra from 10 months until 5 years old and did fine. All of the sudden, he became very, VERY physically aggressive. We thought that it was because of a different medication that was added. However, the neurologist insisted that he thought it was the Keppra. He was right. Keppra is gone and now I have my baby boy back (who doesn't beat the crap out of me!) My son also has ASD.
 
My son has Down syndrome and ASD and started having grand mal seizures at age 24. He is largely non-verbal. Apparently this is fairly typical of someone with Down syndrome. Anyway, he has been taking a fairly low dose of keppra since and has had no problems or reactions. Actually, we have found that since he has been on the medication, he is much brighter, follows directions better and has more energy with attempts to communicate. So, we are wondering, and so is the neurologist, if he has been having small seizures for a while (staring, fidgeting, etc.) and we never noticed.
 
So, we are wondering, and so is the neurologist, if he has been having small seizures for a while (staring, fidgeting, etc.) and we never noticed.

I wonder if he was having silent seizures, I think hey might be called absent seizures as well. With these types of seizures, they are quick and no real visible signs other than sometimes a blank stare or the person not hearing something said to them at that point.

For months leading up to the night my sister almost died from major seizures, she had to be revived three times, she had been off. We would ask her something and when she did not answer, we would ask again and reminder her we needed an answer. She said she never heard us the first time. For a while afterwards, while they adjusted medication, she would still zone out on us.

There are still times when we wonder if she is having silent seizures or if she is just ignoring us as she does that sometimes.
 
My son took Keppra for several years. He had two main side effects that resolved after going off the medication. One, it made his hair curly which was really sort of strange. The far more serious one was that it hampered his ability to perspire and made hot temperatures just miserable for him. We learned this the hard way by his having to leave a summer air show in an ambulance. :( If it would happen to affect your son this way just make sure to provide plenty of shady and cool time and we also used frozen washcloths, etc. to cool him off. With your son being nonverbal I would look for the obvious lack of perspiration if the rest of the family is feeling the heat and also a very red face.
 












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