Autism & Epilepsy & General Epilepsy Experiences

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

KarenB said:
I'm becoming increasingly convinced that gut issues might be driving a lot of the other symptoms in autism. For instance, when Jon went back on probiotics this summer (Kid's Culturelle powder - Lactobacillus G), not only did it clear up his diarrhea, but within 2 weeks, we saw an amazing change in his demeanor. He was far less agitated, much calmer, far less repetitive actions. I'd had a meeting with his teacher in May (when he was having the diarrhea but before probiotics), and she said it was like he was "disappearing into autism world" -- he was so fixated on stimming that she couldn't get him to do do anything or look at anything -- no matter what she did -- brushing protocol, lotion rubs, joint compressions, long walks, his tumbleform chair, etc. -- all the tricks she had up her sleeve to bring Jon into the real world weren't working. After a couple weeks on probiotics, she started sending home enthusiastic notes, "Jon had the best day ever!" She said he was focused and doing tasks that he'd never done before.
Click to expand...

Orion took the Kid's Culture powder until I read that stomach acid destroys the probiotics. Orion would need something that doesn't break down until it reaches his intestines and he can't swallow pills.
 
MAB
Can you check with your local health food shop what alternatives is possible?

There is a brand I take for my boys and I which I can undo the capsule and its directions state I can mix it into unheated food or drink. My boys hate taking capsules. (These probiotics don't need to be refrigerated.)
My daughter has no issues with swallowing the Lactobac capsules which need to be refrigerated.
 
The primary reason that the Keto diet and Zonisamide usually don't work well together is that Zonisamide (and also Topomax) cause metabolic acidosis in almost all children (even at extremely low doses) and in about 50% of adults. When coupled with the Ketogenic diet, the acidosis can become even worse. What that means is that lots of "buffers" need to be used, to offset kidney issues and other effects of acidosis -- drinking huge amounts of water, usually with either Cytra-K or baking soda/lemon or lime juice/potassium. We had a lot of trouble with acidosis when Jon was at higher levels of Zonegran, but since we came down to 50 mg (and below) he's been fine, although we still follow the water regime.

I didn't know about Zonegran and pernicious anemia -- will have to look into that. Jon has macrocytosis (large red blood cells), intermittent anemia (low RBC, altho iron count ok) and a bone marrow biopsy in 2011 showed mild myelodysplasia, but he had all that before going on Zonegran. He has to be monitored carefully to make sure it doesn't develop into leukemia, but so far, so good.
 
Last edited:
Karen, First they diagnosed B12 deficiency and linked it to the zonisamide. After a few weeks of B12 shots which did not help, they did the tests that revealed the pernicious anemia. My impression is that I have never had the essential factor by which protein is converted into fuel [using B12] and that there is genetic component to it. So I think I was misleading in what I said.
 
Okay
I have been somewhat busy with life stuff that has zilch to do with seizures.. happy to say that my girl has had no seizure since the 18th August. :)
Its Spring time in Oz and there is some minor hay fever symptoms, but I'm resisting use of any antihistamines for Jessica.
 
I have been looking up on stuff about GABA...
The reason is that individuals with Autism have the challenges with maintaining anxiety levels as it is if routines is disrupted and with every day life we all take for granted.

Its been reported that deficiencies of GABA are associated with feelings of anxiousness or panic, overwhelmed, insomnia and restlessness.
GABA IS THE MAIN NEUROTRANSMITTER LINKED TO ANXIETY.
NO , but I am not using any behavioural drugs like Benzodiazepines as these drugs are well known to be addictive and there is the issues of tolerance.

So, how to calm the mind,increase relaxation and improve sleep with GABA..??

Guess what :)
It all seems to be supplements that involve basically
1.Taurine
2,Theanine
3. Magnesium
4.Glycine

Something to not underestimate....
 
Children Who Recover From Autism

With seizures and symptoms of autism often found together, I decided to do this Google search "children who recover from autism" and post some of the results. The same issues (especially note the one about MSG) found with autism often are factors in seizures too. Behavioral approaches have also been used to overcome autism and seizures too.

Nothing turned up right off on FODMAP, but it is likely there if I look further into it. Overall, the prospects for overcoming the symptoms of autism are looking better as more attention is given to the various treatment approaches.

Autism Recovery Possible for Some, Study Suggests - WebMD
www.webmd.com/brain/autism/news/.../autism-recovery-possibl...
WebMD
Jan 15, 2013 - The idea that some children recover from autism remains controversial, but new research lends credibility to the notion.
http://www.webmd.com/brain/autism/news/20130115/autism-recovery-possible



The Kids Who Beat Autism - The New York Times
www.nytimes.com/.../the-kids-who-beat-autism.ht...
The New York Times
Jul 31, 2014 - New research suggests that one in 10 autistic children sheds ... that she used A.B.A. on her two children and that they “recovered” from autism.
http://www.nytimes.com/2014/08/03/magazine/the-kids-who-beat-autism.html?_r=0

My son's recovery from autism - Vicky Leon's personal story
https://www.facebook.com/autismrecovery

How my son recovered from autism October 30, 2009. Photos ... 'Nicholas's face became alive once we changed his diet and gave him the correct supplements.
https://www.facebook.com/autismrecovery

Chemist says omitting MSG cured daughter's autism - SFGate
www.sfgate.com/.../Chemist-says-omitting-MSG-...

San Francisco Chronicle
Mar 19, 2014 - Dr. Antonio Hardan, a child and adolescent psychiatrist at Lucile ... if Brooke Reid's recovery might have been a coincidence to the diet.
http://www.sfgate.com/health/article/Chemist-says-omitting-MSG-cured-daughter-s-autism-5329126.php
 
Thanks Zoe. I will look at soe of the links when I get home from work. I don't handle reading to much about autism while at work.
 
So, how to calm the mind,increase relaxation and improve sleep with GABA..??

Guess what
It all seems to be supplements that involve basically
1. Taurine
2.Theanine
3. Magnesium
4. Glycine
Click to expand...

Be careful with theanine. While it can raise the seizure threshold for partial seizures, it can lower the threshold for generalized seizures.
 
Nakamova said:
Be careful with theanine. While it can raise the seizure threshold for partial seizures, it can lower the threshold for generalized seizures.
Click to expand...

You always have good info.

When I tell most of my doctors the supplements I take they just kind of look at me, kind of like either they don't know anything about them or that I am wasting my money.

When I saw my neuro for the first time she said "wow, you're taking a lot of good things". :)
 
Do a Google search on "GABA" "sprouted brown rice" I posted stuff here, think Karen did also, but don't recall where.
 
Phew
Its been quite hectic for me lately.. mostly not Epilepsy related fortunately :)
The challenge is continuing to try and provide her with quality in life in maximizing her potential.
There is puzzle pieces that include the Epilepsy, Autism, Brain and Gut, I cannot underestimate the links that one thing can affect another.
Simple as that .
 
Hi Nak
Hmmm Theanine is amino acid found in green tea and seems to influence the GABA levels.
Something else to consider is that theanine also positively influences the neurotransmitters, serotonin and dopamine, which are both associated with mood. People with Autism struggle in maintaining their levels of anxiety. Something to consider for my girl with supervised input from my medical nutritionist.

Are you able to provide me a source to that info about increased usage of the Theanine can exacerbate the complex seizure activity?
 
MAB
The problem with some Neurologists is they fail to look at stuff holistically and never want to rock the boat with something that's not in their speciality. Also meaningful collaboration between conventional specialists just doesn't happen. You have to collaborate, look at what works for you.. both conventionally and alternatively.
 
Last edited:
I have got some links from Zoe which she has kindly posted to me.
Its very interesting stuff about the merits of Brown rice.


Brown rice another superfood to consider.

Karen or Zoe you two are more competent with links than I, Ive tried posting the links but its not working.. I'm not computer minded sorry.
What caught my eye was the research demonstrating the GABA benefits.
 
Last edited:
Hi Angel,
If the links are not working, do you know how to cut and then paste them into the address bar? If you don't get them to work, can you send them back to me to test them out?
For GABA it may be easier for you to try these searches (and others you may think of):
"GABA Seizures"
"GABA and nervous system"
"gaba and autism"
"benefits of GABA" watch for hype on this one and double check with your doctor or pharmacist.

For theanine:
"theanine seizures"

We are all goin to be so informed on these things!
 
This is in tonight’s news. I suggest treating it with caution because it is worded to sound that all children with ASD have the same symptoms for the same reasons. At some point let's hope some researchers will look into how diet, digestive disorders, inflammation, and blood flow in the brain may be interlinked.

'Social Brain' Impaired In Children With Autism
Science World Report-4 hours ago
The study results showed that children with an autism spectrum disorder (ASD) have something called hyper-perfusion, otherwise known as increased blood ...

http://www.scienceworldreport.com/a...al-brain-impaired-in-children-with-autism.htm
 
Hey Blonde Angel, sorry just saw your question about links regarding theanine and seizures. See http://www.maneyonline.com/doi/abs/10.1179/1476830512Y.0000000033 The study suggests that it may raise the seizure threshold for limbic seizures, (temporal and frontal lobe focus), but lower it for generalized seizures.

If your daughter doesn't experience generalized seizures, then the theanine supplement might be fine for her to take.

I only get generalized seizures. Anecdotally, when I tried a theanine-based product called "Cognitea" (see http://cognitea.com/) I didn't have a seizure, but I felt as if I might have one. Hard to describe the sensation, but I realized that theanine tea product was hurting more than it was helping in my case.
 
Zoe said:
This is in tonight’s news. I suggest treating it with caution because it is worded to sound that all children with ASD have the same symptoms for the same reasons. At some point let's hope some researchers will look into how diet, digestive disorders, inflammation, and blood flow in the brain may be interlinked.

'Social Brain' Impaired In Children With Autism
Science World Report-4 hours ago
The study results showed that children with an autism spectrum disorder (ASD) have something called hyper-perfusion, otherwise known as increased blood ...

http://www.scienceworldreport.com/a...al-brain-impaired-in-children-with-autism.htm
Click to expand...
My DIL and I just had GS at hospital for 5 hours today for digestive disorders. He had a contrast enema. I don't know if it was more traumatic for him or us. We were all crying. Of course he couldn't expel the contrast so more torture when they had to had to reinsert a tube and withdraw the contrast. They could only get less than half out.
Once it was over he seemed fine. I hope him memory of it fades soon.

So worn out. 2 klonipin and to bed I go. People don't realize how many physical health issues go along with autism.
 
You must log in or register to reply here.
Back
Top Bottom