My daughter

[LeighAnn]

My little girl is 8yrs old. She has had seizures since she was 4 months old. We have had her on dilantin, trileptal, keppra and now lamictal. She still has focal seizures almost daily but every once in a while she has a pretty bad one where she foams at the mouth jerks and looses her muscle tone. Is there anything as far as natural supplements that I can give her to control these? Her body just metabolizes everything too fast. The keppra helped but caused ALOT of behavior problems. Any suggestions would be greatly appreciated. Thank you.

[epileric]

Welcome to CWE.

A lot of people (including myself) had problems with keppra. If she metabolizes things too fast have you tried getting her on the time-released meds?

Here is a list of various therapies that different people have used for epilepsy.

http://www.coping-with-epilepsy.com/...ive-treatments

You also might want to check out the nursery & see what other parents have done. http://www.coping-with-epilepsy.com/forums/f42/

[droolmonster]

I know that keppra is famous for the "keppra rage". I am currently taking A LOT of keppra and it's helped a little. You should know that you can smooth out side effects of keppra with another drug. For instance, keppra and lamictal, or in my case, keppra and trileptal. If her epilepsy is that serious then you shouldn't try one med and up and up the dosage, but go for the cocktail.

She is very young, however. I feel for you. Talk to your doctor and don't give up, and make sure she knows how to relax. You could, for instance, teach her how to meditate. That's weird, I know, but she may get into it. My favorite activity at that age was reading. Make sure she gets enough sleep. Maybe she's young enough so that there will be medical advancements in the future. Also, children could "outgrow" their seizures. So there is hope.

[LeighAnn]

Thank you for your input. Unfortunately she is also autistic so she doesnt understand alot of whats going on around her. She is mentally and developmentally delayed.

[Nakamova]

Hi LeighAnn, welcome!

B6, taken in a B Vitamin Complex has helped some folks with the behavioral side effects of Keppra.

Nutritional approaches do seem to make a difference for some, particularly the gluten-free diet. There's plenty of info here on that and other diets (MAD, MED, GARD) -- you can search using the search tab at the top.

Best,
Nakamova

[droolmonster]

I'm so sorry. But you know what they say about autistic people is that they're secretly geniuses or something... They're in their own world. I don't know you or your daughter though. There's lots of books you can get about natural medicine. I'm sure you can get some tinctures or whatnot at the healthfood store. Don't stop the regular medicine, but some herbs can't hurt. It must be very hard for you.

Oh, and there's this Thai movie I saw, a martial arts film about an autistic girl, the movie's called Chocolate, the autistic girl in the movie was great at Kung Fu just from watching movies, the actress did such a fantastic Bruce Lee impression... if you're into martial arts watch it, otherwise better not. It's very brutal. It might cheer you up a little though.

I mean well, I assure you.

[LeighAnn]

I agree with the genius part. She truely is and so are the children in her class at school that are like her. I have actually read that magnesium deficiency may be a link to autism AND seizures. Have you heard or read that before? We tried increasing her lamictal a few months ago but got the nasty rash from head to toe so we had to take it back to where she was. As far as the keppra "rage" you mentioned we had her on two different meds for that at the same time with no luck. We took her off the keppra and her behavior has gotten somewhat better. I no longer get a concussion from her when I ask her if she wants a drink. Thank God. I just would love to get her "cured" of all thats wrong with her with natural supps if possible.

[Nakamova]

Magnesium can definitely play a role in neurological health. RobinN (CWE member) found that magnesium stopped her migraines after years of suffering.

[RobinN]

Yes, Nakamova is quite correct. It has been a true lifesaver for me. My daughter also takes it. We both take more than the RDA.

Have you also looked into all of the dietary changes that many families find success with?
Food sensitivities, since your baby was about the age of introducing solid foods.

Did you notice regression? Or was it gradual. I have a son with Aspergers, and he is extremely high functioning. I didn't know about any of this until he was about 16. Negative traits began to spiral out of control, but now that I have learned about the syndrome, I realize that we lived with many of the traits and thought he was unique.
He now has GI issues, which is very common with AS patients. Making nutritional changes really has helped.

Do you know this site?
http://www.stankurtz.com

[LeighAnn]

Robin, I have read the Jenny McCarthy books and she talks about him but I have never went to his site. Thank you for posting it.

[Jan4you]

Hi Leigh Ann.. I hope you are coping ok today.

If I had a child with ANY problems I would have them evaluated by someone trained in ART or NRT which is Autonomic Response testing or Nutritional response testing. Its lengthy if they do NOT have the computerized program.

What it does is in my lay person's language is READS the energy of the body and finds out WHERE you may be TOXIC (most of us are..just due to the chemcals we ingest/breath)..then it evaluates what you may be allergic to.. or how medications side effects can be helped nutritionally.. (interactions) and what to take nutritionally TO BUILD UP YOUR systems
AFTER it evaluated each and every part of the brain and ALL your systems.

Now if it's a computerized program the person just has to hold these connectors otherwise the slower way to evaluate is by holding each product n your hand and that takes a long time.

I did have both my grandsons do this. The youngest was under 2 and he did well. Both have speech problems/delays and allergies..the oldest has a type of Asperger's and he did not talk at all until after he went through the nutritional program/detox. He is doing well at nearly 8yo now but is still in speech. the young one is 3 now and he has improved greatly.

I too have had this eval and it helped my MS symptoms etc..but have not been back yet to my nutritionist as I am paying for all the medical docs/tests/hospitalizations first.

So look up NRT and who has training in this.. many are chiropractors..mine has limited training who referred me to this nutritionist who has extensive training. Its the most amazing process. I tell my neurologists so when I am getting worse they suggest I go back to my nutritionist.

Good luck.. I know its hard stuff you are challenged with.. so HUGS~!

Warmly, Jan

[LeighAnn]

Thank you so much Jan.

[RobinN]

Robin, I have read the Jenny McCarthy books and she talks about him but I have never went to his site. Thank you for posting it.

I recommended him to someone and he was helpful in finding them a doctor in their area that would work with them on their particular issues.

I love his recovery videos. They sure gave me hope when we began on this journey.