Anyone controlled seizures by supplments

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starmum
Posts: 39
Joined: Thu Oct 16, 2014 4:26 pm

Anyone controlled seizures by supplments

Postby starmum » Fri Dec 23, 2016 10:33 am

Hi i really appreciate the forum members you all are awesome i am learning alot from you.

My 5 years asd has abscence seizures for 2.5 years doctors do not pay attention to it. Last may We started leucovrin i upped the dose v. v slowly to 5.5mg within 2 months. Then He began to have eye rolling on august.

i thought it is a sign of eplipsey we did 6 hours Egg . He has focal left temporal lobe eplipsey . He has spikes during sleep too. His first seizure while sleeping was while we are doing the Egg.

My son is an allergy kid has very high milk allergy that caused gut inflammation then bleeding for months.Allergic to some suppllments as vit c . I told his neuro my son history.

He was put on lamicatal 6.25 mg daily from first day i saw rash increasing then a burn like circle plus diarrhea from day 1 . so i called neuro he is not familiar with drug allergies at all. Told me to stop it .
It was clear that he is developing steven-johson syndrome.

Then he prescribed convulex (depakote). Rash diarrhea 6 times a day plus itching and strong gut ache.we stopped it too.


We went to a new neuro he prescribed keppa 400 mg every 12 hours 4 cm. Iam afraid to try another AED.and then he becone allergic to it .

Since i saw eye rolling i gave him gaba 250mg daily i saw a 50% decrease in eye rolling then added taurine he is now on 2 capsules 325 mg plus 64 mg magesiumand 75 mcg selenium . I am not sure if it will control seizures but since i upped yhe taurine i did not see a seizure yet .his seizures are during sleep only, plus abscence seizure and eye rolling eye crossing while he is awake.

I noticed increased eye contact.

My question had anybody controlled seizures and normalized Egg with suppllements as taurine, mag, b6 ,zinc. Or we have to use AED to control seizures and normalize EGG . Can suppllements cross brain barrier as AED do?
I am worried if not using AED things go worse or losing precious time.
he has minimal language he mands with obe words since 9 months ago we are trying that he use a sentence.


Ketoginc diet is a no no for us. He is a picky eater no vegtables or fruits at all.
Thanks

FatherOf2
Posts: 1677
Joined: Mon Mar 11, 2013 1:37 am

Re: Anyone controlled seizures by supplments

Postby FatherOf2 » Sat Dec 24, 2016 12:33 pm

Look here
http://www.autismweb.com/forum/viewtopic.php?f=4&t=30990&p=209069&hilit=taurine+seizures#p209069
http://www.autismweb.com/forum/viewtopic.php?f=4&t=27614&hilit=scrappymommy
http://www.autismweb.com/forum/viewtopic.php?f=4&t=30389&p=204602&hilit=keppra+teeth#p204602
ScrappyMommyof3 said she controlled seizures with Taurine, Nagnesium and B6. Search her posts. Here is her list of supplements from 2013:
Morning-
Multivitamin (we use Smartypants Gummies which have fish oil in them see my note)
Focus Factor (mainly a b12 and choline supplement)
Fish oil Gummies
B6 250mgs
Magnesium 125mgs
GABA 500mgs
Taurine 500mgs
Extra Fish oil
Note: the fish oil when all added up in the morning equals 1000 total. The B6 and magnesium I crush up, GABA and Taurine I open the capsules and empty the contents out and I mix all of this along with the extra fish oil with applesauce and feed to him as he won't take pills.

Lunch Time-
GABA 500mgs (on school days I mix this into his drink in his thermos)

Late afternoon/dinner time-
B6 250mgs
Magnesium 125mgs
GABA 500mgs
Fish oil 1000

Before bed (about 8pm ish)
Melatonin 3mgs


Vit E, selenium, folic acid, and Carnosine are also known to reduce seizures. Among herbs - Bacopa (orally), Francincense (rubbed on skin), Marijuana (Cannabis). My son took Taurine, Mg, vit E, selenium and carnosine during his 2014 EEG test, and his EEG was full of frequent spiking. So, these supplements only work for some. Seizures are hard to control even with medications.

starmum
Posts: 39
Joined: Thu Oct 16, 2014 4:26 pm

Re: Anyone controlled seizures by supplments

Postby starmum » Sat Dec 24, 2016 6:44 pm

Then
Last edited by starmum on Mon Dec 26, 2016 6:06 am, edited 1 time in total.

AspieGenes
Posts: 114
Joined: Wed Sep 28, 2016 12:32 pm

Re: Anyone controlled seizures by supplments

Postby AspieGenes » Sat Dec 24, 2016 7:48 pm

starmum wrote:Supplements do not cross BBB unlike AEDs.


Supplements do cross the blood brain barrier:

https://www.ncbi.nlm.nih.gov/pubmed/7452254

"Penetration of riboflavin through the blood-brain barrier, saturable efflux of riboflavin from CSF, and saturable entry of riboflavin into brain cells are three distinct parts of the homeostatic system for total riboflavin in the central nervous system."

And

https://books.google.com/books?id=g1rUt ... er&f=false

starmum
Posts: 39
Joined: Thu Oct 16, 2014 4:26 pm

Re: Anyone controlled seizures by supplments

Postby starmum » Sun Dec 25, 2016 1:34 pm

AspieGenes wrote:
starmum wrote:Supplements do not cross BBB unlike AEDs.


Supplements do cross the blood brain barrier:

https://www.ncbi.nlm.nih.gov/pubmed/7452254

"Penetration of riboflavin through the blood-brain barrier, saturable efflux of riboflavin from CSF, and saturable entry of riboflavin into brain cells are three distinct parts of the homeostatic system for total riboflavin in the central nervous system."

And

https://books.google.com/books?id=g1rUt ... er&f=false



Ok i was not sure i read alot on gaba for example. Taurine, mag theronate only cross bbb so not all supplments do cross BBB

starmum
Posts: 39
Joined: Thu Oct 16, 2014 4:26 pm

Re: Anyone controlled seizures by supplments

Postby starmum » Mon Dec 26, 2016 6:02 am

FatherOf2 wrote:Look here
http://www.autismweb.com/forum/viewtopic.php?f=4&t=30990&p=209069&hilit=taurine+seizures#p209069
http://www.autismweb.com/forum/viewtopic.php?f=4&t=27614&hilit=scrappymommy
http://www.autismweb.com/forum/viewtopic.php?f=4&t=30389&p=204602&hilit=keppra+teeth#p204602
ScrappyMommyof3 said she controlled seizures with Taurine, Nagnesium and B6. Search her posts. Here is her list of supplements from 2013:
Morning-
Multivitamin (we use Smartypants Gummies which have fish oil in them see my note)
Focus Factor (mainly a b12 and choline supplement)
Fish oil Gummies
B6 250mgs
Magnesium 125mgs
GABA 500mgs
Taurine 500mgs
Extra Fish oil
Note: the fish oil when all added up in the morning equals 1000 total. The B6 and magnesium I crush up, GABA and Taurine I open the capsules and empty the contents out and I mix all of this along with the extra fish oil with applesauce and feed to him as he won't take pills.

Lunch Time-
GABA 500mgs (on school days I mix this into his drink in his thermos)

Late afternoon/dinner time-
B6 250mgs
Magnesium 125mgs
GABA 500mgs
Fish oil 1000

Before bed (about 8pm ish)
Melatonin 3mgs


Vit E, selenium, folic acid, and Carnosine are also known to reduce seizures. Among herbs - Bacopa (orally), Francincense (rubbed on skin), Marijuana (Cannabis). My son took Taurine, Mg, vit E, selenium and carnosine during his 2014 EEG test, and his EEG was full of frequent spiking. So, these supplements only work for some. Seizures are hard to control even with medications.


Thanks father of 2 i really learned alot from your replies on other posts.

Have your son Egg normalized? I think you wrote that he do not have seizures.we are dealing with spikes too.
I read your reply on me on other thread your son is on trileptal and lamictal?still having spikes on his Egg?

Supplements do not cross BBB unlike AEDs.


For scrappy mommy of 3 her son seizures are slight.they are abscence seizures only.
that is a quote from her

ScrappyMommyof3 wrote:
So happy to hear that! We are going on a year with no AED's and no seizures here, but my son's seizures were so slight and infrequent that the B6 and Taurine work well for him. Just had an EEG a week ago (sleeping as it is the only one he will let us do) and there was no "marked" activity.

FatherOf2
Posts: 1677
Joined: Mon Mar 11, 2013 1:37 am

Re: Anyone controlled seizures by supplments

Postby FatherOf2 » Mon Dec 26, 2016 11:48 am

We started with Trileptal in April this year, at the minimum dose of 300mg/day, which we never increased. In October, we tested his EEG and it improved remarkably. All night-time spiking was gone. There were just a few isolated spikes during a day. Our neurologist advised to increase the Trileptal dose to 600mg/day. But, after reading some articles which reported Trileptal causing Landau-Kleffner syndrome (LKS), I decided to add Lamictal instead. We just now reached our target dose of Lamictal and will repeat 24hr EEG in a month to see if his EEG stabilized. If not, I will most likely dial Lamictal down to 50mg-75mg, where we saw positive mood and increased socialization, and double Trileptal instead. The previous EEG we did was at the end of 2014. In those two years we did 3 courses of HBOT, which could have 'fixed' the brain. Also aging could be attributed to the EEG improvements we saw this October. They say that by age of 12 abnormalities in EEG either go away or grow into seizures (my son is almost 8 now). LKS usually appears between ages of 3 and 7. So, it is hard to say whether the dramatic improvements we saw in his EEG in October were due entirely to Trileptal.

starmum
Posts: 39
Joined: Thu Oct 16, 2014 4:26 pm

Re: Anyone controlled seizures by supplments

Postby starmum » Mon Dec 26, 2016 1:50 pm

FatherOf2 wrote:We started with Trileptal in April this year, at the minimum dose of 300mg/day, which we never increased. In October, we tested his EEG and it improved remarkably. All night-time spiking was gone. There were just a few isolated spikes during a day. Our neurologist advised to increase the Trileptal dose to 600mg/day. But, after reading some articles which reported Trileptal causing Landau-Kleffner syndrome (LKS), I decided to add Lamictal instead. We just now reached our target dose of Lamictal and will repeat 24hr EEG in a month to see if his EEG stabilized. If not, I will most likely dial Lamictal down to 50mg-75mg, where we saw positive mood and increased socialization, and double Trileptal instead. The previous EEG we did was at the end of 2014. In those two years we did 3 courses of HBOT, which could have 'fixed' the brain. Also aging could be attributed to the EEG improvements we saw this October. They say that by age of 12 abnormalities in EEG either go away or grow into seizures (my son is almost 8 now). LKS usually appears between ages of 3 and 7. So, it is hard to say whether the dramatic improvements we saw in his EEG in October were due entirely to Trileptal.


I wish your son the best.Since the last Egg you did from 2 years so It maybe the hbot + trileptal which improved his egg. Did you see improvement in asd symptoms?language ?

FatherOf2
Posts: 1677
Joined: Mon Mar 11, 2013 1:37 am

Re: Anyone controlled seizures by supplments

Postby FatherOf2 » Mon Dec 26, 2016 2:39 pm

Improvements from Trileptal was mostly reduced behaviors, easier transitions, much less SIBs. Lamictal gave the following improvements:
- more soical, playing with his twin brother much more often, making goofy jokes with him and laughing at some cartoon episodes, approaching strangers and saying 'hi, how are you?'
- language became more social. Sentences are more often addressed to others, more conversation language rather that abstract statements. Using words 'mama', 'daddy', and his brother name in sentences much more often.
- more curious about things. This Christmas he actually looked for boxes with his name and unwrapped them.
- mood is much better, laughs more often (no wonder that Lamictal is also used to treat depression).
But Lamictal caused more irritability at doses below 50mg. Doses between 50mg and 100mg didn't cause any irritability above what Trileptal gave us and caused all the above improvements. My fear is that these improvements may disappear due to drug tolerance which is known with Lamictal. So, Lamictal is not a permanent answer to my son's autism, but at least it will help him with learning and stay away from seizures until he reaches 12.

starmum
Posts: 39
Joined: Thu Oct 16, 2014 4:26 pm

Re: Anyone controlled seizures by supplments

Postby starmum » Mon Dec 26, 2016 3:15 pm

FatherOf2 wrote:Improvements from Trileptal was mostly reduced behaviors, easier transitions, much less SIBs. Lamictal gave the following improvements:
- more soical, playing with his twin brother much more often, making goofy jokes with him and laughing at some cartoon episodes, approaching strangers and saying 'hi, how are you?'
- language became more social. Sentences are more often addressed to others, more conversation language rather that abstract statements. Using words 'mama', 'daddy', and his brother name in sentences much more often.
- more curious about things. This Christmas he actually looked for boxes with his name and unwrapped them.
- mood is much better, laughs more often (no wonder that Lamictal is also used to treat depression).
But Lamictal caused more irritability at doses below 50mg. Doses between 50mg and 100mg didn't cause any irritability above what Trileptal gave us and caused all the above improvements. My fear is that these improvements may disappear due to drug tolerance which is known with Lamictal. So, Lamictal is not a permanent answer to my son's autism, but at least it will help him with learning and stay away from seizures until he reaches 12.



Waw every gain is a gift for parents. I wish for him the best.keeping him away from seizures is an important target. Thanks very much.

anied4630@gmail.com
Posts: 4
Joined: Sun Nov 20, 2016 5:13 pm

Re: Anyone controlled seizures by supplments

Postby anied4630@gmail.com » Fri Dec 30, 2016 5:12 pm

My DAN has prescribed my son with L-Taurine 250 mg and Melatonin 2.5 mg/day. MY DAN advised to buy from Kirkman. Anybody used some other brands with good result? I don't see good reviews on these drugs sold by kirkman Group Inc in Amazon. Also are Kirkman lab and Kirkman Group Inc different?

TamiW
Posts: 3855
Joined: Fri Feb 25, 2005 12:46 pm

Re: Anyone controlled seizures by supplments

Postby TamiW » Mon Jan 23, 2017 3:54 am

starmum wrote:then added taurine he is now on 2 capsules 325 mg plus 64 mg magesiumand 75 mcg selenium . I am not sure if it will control seizures but since i upped yhe taurine i did not see a seizure yet .his seizures are during sleep only, plus abscence seizure and eye rolling eye crossing while he is awake.

My son used to have absent mal seizures daily. I used to think they were a stim as initially it was just facial grimacing and squinting but eventually he began eye rolling back and his head jerking. We were able to control them 100% with taurine and cal/mag liquid. Once we detoxified the metals to decrease his body burden, he no longer depended on the taurine & cal/mag liquid. However, I don't know if this would be true for all types of seizures. It is my understanding that if seizures are happening, doing whatever is necessary to control them as soon as possible is important as the brain can get 'used to' so to speak having them. That's so great to hear you've found a combination that works for your son. Great work!
Tami


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