Autism, Epilepsy and Keppra

[Anka]

My daughter, Kassandra, has been diagnosed with Autism early last year. She was 5. Around the same time with the Autism diagnose, we had an EEG performed and it showed abnormal brain activity. We were told that she suffers from "absence seizures".

Since the both diagnosis we started her ABA therapy for her ASD and we tried four different drugs for her epilepsy (valproate, zarontin, clonazepam and lamotrigine). At some point, we noticed some progress in her behaviour (she is now able to say three-four words phrases, she can count to 50, she dresses herself etc) but she still struggles with her bowl delivery (80% of the time she cannot get to the toilet) and we cannot make her do things in many occasions (and the list is endless).

Yesterday we were prescribed Keppra for her epilepsy. I've read the posts here and cannot describe how worried I am. Also, she is a very smart little girl and has a bubbly personality but lately her nature had changed: she is moody, angry without reason, screams lots, cannot sit still, has different tics (one of them if flittering hey eyelids - the neurologist suspects that is a seizure, we are still confused if that is true or not because se does it all the time). I cannot imagine her being on keppra and being enraged as some people seem to have experienced. (She is slowly coming off the lamotrigine who did nothing to her seizures but even worsen her behaviour).

I see that many people recommend the B vitamins to be taken along with Keppra. At this point, I feel that I shouldn't even try to administer Keppra without the vitamins.

Is it possible that the EEG should show abnormal activity just because she is Autistic? Is it possible that she is not Autistic and because of the seizures her speech is delayed and her bowl control is "uncontrolable"?

Has anybody a any similar story to ours? Maybe one with a happy pursuit?

Thank you.

The loving mother of Kassandra (LMK)

[peglem]

Did the bowel problems precede the seizure meds, or is that a side effect? My daughter had a similar seizure presentation, with abnormal eeg. She is currently on Lamictal, for that. I guess it works, she's got a lot going on.

I do think the autistic behaviors can be caused by seizures, and many other things as well. I stated it that way on purpose because the autism diagnosis is based completely on observable behaviors and makes no distinction as to causality.

At any rate...has she seen a gastroenterologist for the GI issues? GI problems can actually cause a lot of neurological problems, and that's where I'd start looking if I were you. Make sure she's tested for Celiacs.
Is your daughter in pain from GI issues? (Mine can't tell me if she is in pain or not). That can interfere with development and sleep (which can also interfere with development....

As far as vitamin B goes, all seizure meds are reported to deplete B vitamins. But Bvitamins are notoriously "yucky" to take. I took a B complex once and I was burping that disgusting flavor all day. (hence the "once") My daughter takes a version of SuperNuThera from Kirkman's which is high in B vitamins...I tried it and didn't have the problem that I did with the grocery store Bcomplex.

Oh, where are my manners....Welcome to the forum!

[LIZARD]

Welcome! :)

I'm sorry you're facing all this confusion. I have always had epilepsy and can tell you that every AED comes with its own package of annoying side effects, so you have to balance side effect severity with effectiveness, and some drugs will pack less of a punch and for a shorter time than others, but it all depends on body chem, so it really is a crap shoot.

Also, she's young, so she may not always have szs. Puberty can help or hurt, and effects can change over time, too. An important part of management is identifying and avoiding triggers whenever possible.

Is it epilepsy rather than autism? This is a tougher question to answer. Do you know when the szs started? If they have been most of her life, they and their effects may be mimicking autism, but there may not be a way to answer this unless she gets excellent control, has been having many per day, and has no underlying neurological issue complicating all of it. If she hasn't had one yet, she should get an MRI. It's not uncommon at all to have an autism dx as a result, or as an aggravating factor of, a malformation or foreign growth in the brain. My son has Chiari Malformation, which is being found more and more often in our kids who have MRIs done, and if there are szs, it's all the more reason to look. It may not be completely to blame, but it can certainly worsen the autism.

*hug and good luck!

LIZARD :)

[RathyKay]

Welcome! My son has brain damage, epilepsy, is developmentally delayed with a few autistic quirks. He's not technically autistic (it's brain damage!), but enough fits that I come here for insight and suggestions.

Tom was on keppra for awhile. It was a good med for him. We saw lots of developmental progress. He did not have Kepp-rage. We also started a B6/Magnesium combo at the same time. Several of the B vitamins are recommended for helping with autism and any other digestive issues. (If you have celiac or are just malabsorbing, the B vitamins seem to get hit first.) But, I was told B6 specifically for keppra. Anyway, Tom is on a multi-vitamin/mineral with additional B6/Magnesium and a whole slew of other supplements. Our neuro said that B6 and Mg were "calming to the brain." I keep thinking that one of them (B6 or Mg) will deplete the other, which is part of the reason for taking them together.

If you're interested, we went the dietary intervention route and got off seizure meds that way. We still see occasional seizures, but I've been able to figure out triggers for each one and try to avoid future ones that way. If things ever get out of control (puberty is coming:o) I'm guessing that keppra will be back for us.

Since she's already tried seizure meds, I'm assuming you know that she'll have some initial side effects and then things should calm down. Tom did this for each of his meds and keppra was no different. He used to be extra clingy and irritable like he was getting a cold for a few days and then was fine. Keppra is processed through the kidneys, versus the liver, so you want to try and pump water in her (drink, drink, drink) to help mitigate side effects.

From personal experience, Tom went nowhere developmentally while his seizures were out of control. If her personality has changed and there is irregular activity, I think it's worth a try to calm down her brain and see if that helps. My theory was that easy-going, good-natured kids tended to do well on keppra, while those that were a little more... temperamental had more rage problems with it. Someone else thought boys did better on it than girls. I don't have enough data points to know either way.

Oh... we used to take this one (a chewable) and I thought it was pretty tasty. http://www.kirkmanlabs.com/ViewProductDetails@Product_ID@274.aspx Now we're using this one (our DAN! doctor sells at cost to us) http://www.kirkmanlabs.com/ViewProductDetails@Product_ID@211@Product_Group_ID @1.aspx It's a huge horse pill, but Tom has no problems swallowing it.

[Anka]

Thank you for the warm welcome.

Up until we started Kassandra on Zarontin, we had constant problems with the bowel. So, yes the problems were prior to Lamotrigine but whilst on Zarontin and then Clonazepam, we had almost full control (just the seldom accident). She would go potty all by herself and ask for help at the end. Life was good.

When coming out of Clonazepam (which, btw, made her extremely irrascible - to the extent that she would hit everything around her and scream to the nose bleeding point) and going on Lamotrigine, we started to have the bowel accidents all over again. During the Lamotrigine usage (for about 2 months) we were back to square one.

We haven't seen a gastroenterologist yet; I am scheduled to see our GP soon and will ask for a referral for both the gastroenterologist and the MRI. I don't believe she is in pain, she would say that her tummy aches or something along those lines.

She has constant (every 1-5 minutes, depending if it is natural light or artificial light) eye flittering which our neurologist suspects that they are, indeed, the said seizures. I wish I could post some of the videos we have illustrating the eye movement so you understand what I mean. So, if that is a seizure, yes, she has hundreds of them a day. We first noticed them when she was 2 years old; they were very rare and it seemed that she would be blinded by the light (they would only appear in natural/sun light).

Yes, Kassandra seems to be what one would call a "temperamental" girl. So that is why I fear Keppra so much.

Our neurologist offered us the alternative of having her on the Ketogenic Diet, should Keppra be a dead end for her as well as the other drugs.

Now I'm thinking...maybe I am not treating her for the right thing...maybe that is why the drugs don't work on her.

Thank you again for all the kind words and thoughts.

LMK