Epilepsy, Autism and medications

[Suman]

Hi Folks,

My name is Suman and I live in San Francisco, CA.

My 20 year old son has autism and had his first seizure ( a grandmal) juts before his 18th birthday. He was on Keppra (750mg X 2) - gave him the rage and insomnia, Depakote ( 500mg X 2) - aggression, Lamictal (150 mg X 2)- insomnia, severe abdominal pains, induced more seizures, and is currently on Lamictl - 75 mg and Zonisamide - 150 mg. Based on observable behaviors, we believe that the Zonisamide is causing him some kind of deep fear, that is causing him to have extreme anxiety. Now the doctor recommends Vimpat.

I'm so worried.. though I know it's a trial and error process. Just wanted to hear from others who had used or are taking Vimpat.

-Thanks much

 

[Porkette]

Hi Suman,

Welcome to CWE! I'm sorry that your son had a seizure. I have found that keppra triggered seizures for me and I broke out with a rash on Lamictal then I was put on Vimpat and that worked great for me. Since I've been on Vimpat which is about 4 yrs. my seizures have decreased greatly and I don't have any side effects from the drug.
I work with students that are autistic in public school and one thing I have often noticed is when there is a low pressure in the weather the students become more moody and don't behave as well but that's because the low pressure is effecting the hormones in their body. Tell your son to cut back on the carbs and starch foods and this may help him. One thing I started to do is take vitamin B12 1000 mcg. once a day and this did wonders reducing my seizures and it didn't bother me at all. I wish you and your son only the best of luck and May God Bless the Both of You!

Sue

 

[Suman]

Thank you for responding Sue. I'm glad that your seizures are controlled with Vimpat.

If I told my son to cut back on carbs and he listened .... that would be it ... I look forward to such a day

 

[Frink]

Welcome to CWE!

 

[txtiger]

Suman,

Welcome to CWE!

I have been/am on all of the medications you mentioned at one time or another. After failing on many meds, I found an epileptologist (neurologist who specializes in epilepsy) who determined I was a candidate for left temporal lobe surgery. While it did not eliminate the seizures, it did lessen them in frequency and severity for a long time. I have been on Keppra for almost 15 years, no side effects for me. Was down to momotherapy of Keppra XR 2000 mg X2, but after seizure activity started to increase, including a complex partial, my doctor titrated me up to 200 mg X2 Vimpat. Knock on wood, I haven't had a seizure or aura (simple partial seizure) since, and no side effects. I believe it is one of the meds that has fewer side effects.

Of course, as you know, everyone reacts differently to medications. I hope the Vimpat works for your son.

 

[Blonde Angel]

Hi Suman
I'm a mum with a daughter with Autism and Epilepsy.
You have essentially answered your own question, in that you do need to go by your son's behaviour.

The goal for me was NOT to put my child on meds that would increase her anxiety, risk more negative behaviours and have any sleeping issues... or getting sleepy zombie in the day time...Its important to take note of ALL side effects, which includes the not too common. As, you are well aware it can be challenging for those on the spectrum.
Yes, it does involve trial and error, record the behaviours, timing, etc

Also, don't just consider side effects but possible long term use especially on the body's chemistry levels and general well being such as bone density, magnesium, sodium etc.



I also do have her on a diet that aims to improve her wellbeing, and if I could compare to what she was like before I would describe her as an unhappy child with no quality of life.
Most people living in developed countries are malnourished, although you wouldn't think so from looking at obesity statistics.
That weight comes from consuming massive amounts of refined carbs that are loaded with calories but almost devoid of nutrients.

 

[Suman]

Thanks much.
Yes, I'm learning, the road to find the medication and dosage that will control seizures with the least amount of side effects is lo...ng and needs a lot of patience and documentation.
We try hard to help/encourage my son to make healthy choices in his diet, we are not always very successful.

My best to you and your daughter!

 

[gymrat827]

well im 31, have grand mals but they are most of partial 2ndary complex or partial complex.

Ive been on keppra, depatoke, vimpat. Keppra is bad on rage/aggression. Im already kinda bad with that and keppra made me terrible.

But in the start of taking it, it wasnt bad. Depatoke i was only able to take for 8wks because i gained 30lbs in 8wks, i would eat 1 dinner after the next and next. Nothing would fill me up.

Vimpat isnt too bad. Im on the max dose (200 twice aday) and i dont get too many noticeable sides, if you look it up i have a mix of the sides i guess.

I currently take-

1200mg tegertrol
400 vimpat
100 toppmax

5mg lexapro
2mg Klonapin (sleep & seizures as in an insominac)

400mg serquael (sleep)
3mg lunesta (sleep)

id conisder...

keppra 500mg twice a day
as much vimpat as he can handle


than get in inj b12 and B6. use an insulin needle to inj them. u should be able to buy them from int'l pharm's.

dont go 1000mcg a day of b12, 500 is fine. 50-100mg of B6 tho.

The b vits helped me. Not a ton, but with energy, focus, memory, etc. The stuff that wears badly when you take the AED drugs for long periods of time (1-3yrs +). Ive been on mine for 4-6.5yrs depending on dose.

I also have a VNS inplant in my chest.

 

[Blonde Angel]

Yes
Don't forget the B vitamins.

B12 supports energy, brain and heart function.

Use tablets... there is no way I can do injections on a child with Autism

 

[Blonde Angel]

Suman

I have been looking carefully at gut issues and in my situation by using certain foods that are gut friendly, I have noticed improvements in her well being.

GABA is also the main neurotransmitter linked to anxiety.. how is it relevant to Autism ??is the fact that people with Autism do have issues with anxiety.
Behavioural drugs like benzodiazepines can be addictive and there is issues of tolerance.
The supplements that seem to help calm the mind, increase relaxation and improve sleep with GABA includes the following:

1. Taurine (I use a powder)
2. Magnesium tablets
3. Glycine (powdered)

Please check dosages with a professional.

Something to perhaps think about...

 

[Blonde Angel]

well im 31, have grand mals but they are most of partial 2ndary complex or partial complex.

Ive been on keppra, depatoke, vimpat. Keppra is bad on rage/aggression. Im already kinda bad with that and keppra made me terrible.

But in the start of taking it, it wasnt bad. Depatoke i was only able to take for 8wks because i gained 30lbs in 8wks, i would eat 1 dinner after the next and next. Nothing would fill me up.

Vimpat isnt too bad. Im on the max dose (200 twice aday) and i dont get too many noticeable sides, if you look it up i have a mix of the sides i guess.

I currently take-

1200mg tegertrol
400 vimpat
100 toppmax

5mg lexapro
2mg Klonapin (sleep & seizures as in an insominac)

400mg serquael (sleep)
3mg lunesta (sleep)

id conisder...

keppra 500mg twice a day
as much vimpat as he can handle


than get in inj b12 and B6. use an insulin needle to inj them. u should be able to buy them from int'l pharm's.

dont go 1000mcg a day of b12, 500 is fine. 50-100mg of B6 tho.

The b vits helped me. Not a ton, but with energy, focus, memory, etc. The stuff that wears badly when you take the AED drugs for long periods of time (1-3yrs +). Ive been on mine for 4-6.5yrs depending on dose.

I also have a VNS inplant in my chest.

Just querying.. Hi gymrat
is there a specific reason you go for injections?
Rate of absorptions??

 

[Suman]

Thanks for the inputs Blonde Angel.

Have any seizure meds worked well for your daughter without many side effects?

 

[gymrat827]

Just querying.. Hi gymrat
is there a specific reason you go for injections?
Rate of absorptions??

yes. they work about 5x better dose for dose. so say 100mg, orally vs inj is going to be 2 different worlds.

B6 is essential for Keppra, Magnesium-L-Theronate is a decent oral pill to take. It is designed to work through the blood brain barrier and works much better than other forms of it.

1000mcg of B12 may give him a red face or flushing.....thats why i said 500. Some can take it no problem, but given your issues i dont think you want to find out the hard way.


I know inj's can be tough, but mastering a slin pin isnt hard. once you do it maybe 10 times on yourself you will be quick and swift.

you dont bleed from it, there isnt any brusing, but do what you feel comfortable with. The pills would just need a higher dose and 2x a day dosing with meals. you just pee lots out as you drink liquids.




GL

 

[gymrat827]

Thanks for the inputs Blonde Angel.

Have any seizure meds worked well for your daughter without many side effects?

all of them have sides. the newer drugs are the ones will the least. You just need to find the ones that do not effect her that badly.

I was not able to take depakote, lamicatal and keppra really. Keppra made mean a terribly mean man. But it was after 6-9 months of use.

Tegertrol isnt too bad on me, nor Vimpat or toppmax. Hence thats my trio.

Klonapin is a benzo thats works in a lot of ways, docs dont know too much (or thats what i hear) why it works for seizures, but it does. so thats kind of a half/half drug......sleep/seizures.

Id consider a special diet, low, low carb. Vitamins/minerals. etc.

http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments

Check into all of them.

 

[Blonde Angel]

yes. they work about 5x better dose for dose. so say 100mg, orally vs inj is going to be 2 different worlds.

B6 is essential for Keppra, Magnesium-L-Theronate is a decent oral pill to take. It is designed to work through the blood brain barrier and works much better than other forms of it.

1000mcg of B12 may give him a red face or flushing.....thats why i said 500. Some can take it no problem, but given your issues i dont think you want to find out the hard way.


I know inj's can be tough, but mastering a slin pin isnt hard. once you do it maybe 10 times on yourself you will be quick and swift.

you dont bleed from it, there isnt any brusing, but do what you feel comfortable with. The pills would just need a higher dose and 2x a day dosing with meals. you just pee lots out as you drink liquids.




GL

Thanks for the info, I think you got me confused with Suman. I have a Daughter with Autism. Suman has a Son.:rock:

 

[Blonde Angel]

Thanks for the inputs Blonde Angel.

Have any seizure meds worked well for your daughter without many side effects?

Every drug has a side effect, cannot get away from that. However, the search is to find what is going to work well for the Autism not just the seizure control.
My girl is on Trileptal, its the only med so far that hasn't made her nuts.

However, I'm mindful of the long term effects of Trileptal, especially with sodium and calcium depletion. She is on a fairly minimal dosage. I have noticed scalp dryness and her hair is coarser. .... Its better than increased seizure and unpleasant behaviours.

Just remember, what works for someone else may or may not work for your Son. There is heaps of choices but it has to provide some sanity and quality of life for you all.

 

[Blonde Angel]

Suman?
I still remember the day in 2009 when my girl was 6yrs old and had her first seizure and I freaked out.

I was thinking Why? Why? How? How?
"She has Autism isn't that enough?""
Never ever felt so powerless, it was a very lowest point in my life.

 

[gymrat827]

Thanks for the info, I think you got me confused with Suman. I have a Daughter with Autism. Suman has a Son.:rock:

when you are the one on 7 meds, you can get confused. Sorry.

Hope the advice help a tiny bit. I guess i am a different case than your two children.

 

[Suman]

Yes Blonde Angel, I can totally relate to your emotions! Best wishes to your daughter!

My son was a happy kid and when he had his first seizure I kept telling myself that it was just a one timer. Unfortunately, that wasn't the case. I so long to see that happy kid... he's so transformed, he's a chemical factory now!

@Gymrat - your posts are useful!

 

[Andrew]

GABA is also the main neurotransmitter linked to anxiety.. how is it relevant to Autism ??is the fact that people with Autism do have issues with anxiety.

Off vitamin B6 the glutamate level was two hundred times normal. An intermediate dose of vitamin B6 (5 mg/kg BW/day) caused normalization of the EEG and remission of the seizures, but the CSF glutamate concentration was still ten times normal. With a higher dose of pyridoxine (10 mg/kg BW/day) the CSF glutamic acid normalized.

http://pediatrics.aappublications.org/content/94/3/318

Also:

http://www.lifeextension.com/magazine/2011/3/the-chemistry-of-calm/page-01

(GAD) is an enzyme that catalyzes the decarboxylation of glutamate to GABA and CO2. GAD uses PLP as a cofactor.

GAD is activated when bound to PLP and inactive when not bound to PLP.

https://en.wikipedia.org/wiki/Glutamate_decarboxylase

I have also posted here:

http://www.coping-with-epilepsy.com...eneral-epilepsy-experiences-23950/index6.html

**DO NOT ALTER ANY MEDICATION WITHOUT YOUR DOCTOR'S CONSENT**