Coping With Epilepsy EEG Institute
10% off neurofeedback training for CWE members - Woodland Hills, CA
Neurofeedback Partner - Free Advertisement
 

Go Back   Epilepsy Forum > Peer Support > The Nursery



Reply
 
LinkBack Thread Tools
  #21  
Old 09-09-2015, 08:04 AM
MAB's Avatar
MAB MAB is offline
Esteemed Pillar of the Community
 
Join Date: Oct 2013
Location: Ohio, USA
Posts: 926
Thanks: 445
Thanked 274 Times in 231 Posts
Originally Posted by KarenB View Post:
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.
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.
Reply With Quote
The Following User Says Thank You to MAB For This Useful Post:
Bidwell (09-09-2015)
  #22  
Old 09-09-2015, 10:48 PM
Esteemed Pillar of the Community
 
Join Date: Jul 2014
Location: Australia
Posts: 570
Thanks: 348
Thanked 292 Times in 213 Posts
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.
Reply With Quote
The Following User Says Thank You to Blonde Angel For This Useful Post:
MAB (09-10-2015)
  #23  
Old 09-10-2015, 05:11 PM
KarenB's Avatar
Venerable Voice of CWE
 
Join Date: Jan 2011
Location: Rochester, NY
Posts: 1,067
Thanks: 140
Thanked 497 Times in 338 Posts
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 by KarenB; 09-10-2015 at 05:49 PM.
Reply With Quote
The Following User Says Thank You to KarenB For This Useful Post:
Bidwell (09-10-2015)
  #24  
Old 09-10-2015, 08:04 PM
Esteemed Pillar of the Community
 
Join Date: Oct 2013
Location: Northwest United States
Posts: 558
Thanks: 1,232
Thanked 384 Times in 304 Posts
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.
Reply With Quote
  #25  
Old 09-10-2015, 09:13 PM
AlohaBird's Avatar
Venerable Voice of CWE
 
Join Date: Jan 2015
Location: Molokai Hawaii
Posts: 1,920
Thanks: 705
Thanked 1,054 Times in 738 Posts
Send a message via Skype™ to AlohaBird
This is a fascinating post on Dr Perlmutter's site about some new research regarding the gut connection between all these seemingly disparate neurological disorders.

http://www.drperlmutter.com/gut-infl...and_skin_blog9
__________________
[SIGPIC][/SIGPIC]A healthy brain is part of a healthy body. You can't have one without the other.
Reply With Quote
The Following User Says Thank You to AlohaBird For This Useful Post:
Blonde Angel (10-19-2015)
  #26  
Old 09-22-2015, 01:22 AM
Esteemed Pillar of the Community
 
Join Date: Jul 2014
Location: Australia
Posts: 570
Thanks: 348
Thanked 292 Times in 213 Posts
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.
Reply With Quote
  #27  
Old 09-22-2015, 01:38 AM
Esteemed Pillar of the Community
 
Join Date: Jul 2014
Location: Australia
Posts: 570
Thanks: 348
Thanked 292 Times in 213 Posts
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....
Reply With Quote
  #28  
Old 09-22-2015, 01:42 PM
Zoe's Avatar
Zoe Zoe is offline
Alternative Research Encyclopedia
 
Join Date: Mar 2005
Location: Kentucky-Where the Bluegrass is very green
Posts: 662
Thanks: 45
Thanked 207 Times in 109 Posts

Smile 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
http://www.webmd.com/brain/autism/ne...covery-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/ne...overy-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/ma...tism.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...sm-5329126.php
__________________

Zoe

"One should never believe any experiment until it has been proven by theory."--Sir Authur Eddington
Reply With Quote
The Following 2 Users Say Thank You to Zoe For This Useful Post:
Blonde Angel (10-12-2015), MAB (09-22-2015)
  #29  
Old 09-22-2015, 01:52 PM
MAB's Avatar
MAB MAB is offline
Esteemed Pillar of the Community
 
Join Date: Oct 2013
Location: Ohio, USA
Posts: 926
Thanks: 445
Thanked 274 Times in 231 Posts
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.
Reply With Quote
  #30  
Old 09-23-2015, 03:02 PM
Super Moderator / Thank You Queen
 
Join Date: Jun 2005
Location: Massachusetts
Posts: 16,349
Thanks: 938
Thanked 7,272 Times in 5,362 Posts
Quote :
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
Be careful with theanine. While it can raise the seizure threshold for partial seizures, it can lower the threshold for generalized seizures.
Reply With Quote
The Following 3 Users Say Thank You to Nakamova For This Useful Post:
AlohaBird (09-23-2015), Blonde Angel (10-12-2015), MAB (09-23-2015)
  #31  
Old 09-23-2015, 05:43 PM
MAB's Avatar
MAB MAB is offline
Esteemed Pillar of the Community
 
Join Date: Oct 2013
Location: Ohio, USA
Posts: 926
Thanks: 445
Thanked 274 Times in 231 Posts
Originally Posted by Nakamova View Post:
Be careful with theanine. While it can raise the seizure threshold for partial seizures, it can lower the threshold for generalized seizures.
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 neurologist for the first time she said "wow, you're taking a lot of good things".
Reply With Quote
  #32  
Old 09-23-2015, 06:17 PM
Zoe's Avatar
Zoe Zoe is offline
Alternative Research Encyclopedia
 
Join Date: Mar 2005
Location: Kentucky-Where the Bluegrass is very green
Posts: 662
Thanks: 45
Thanked 207 Times in 109 Posts
Do a Google search on "GABA" "sprouted brown rice" I posted stuff here, think Karen did also, but don't recall where.
__________________

Zoe

"One should never believe any experiment until it has been proven by theory."--Sir Authur Eddington
Reply With Quote
The Following User Says Thank You to Zoe For This Useful Post:
Blonde Angel (10-12-2015)
  #33  
Old 10-12-2015, 09:49 PM
Esteemed Pillar of the Community
 
Join Date: Jul 2014
Location: Australia
Posts: 570
Thanks: 348
Thanked 292 Times in 213 Posts
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 .
Reply With Quote
  #34  
Old 10-12-2015, 10:05 PM
Esteemed Pillar of the Community
 
Join Date: Jul 2014
Location: Australia
Posts: 570
Thanks: 348
Thanked 292 Times in 213 Posts
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?
Reply With Quote
  #35  
Old 10-12-2015, 10:10 PM
Esteemed Pillar of the Community
 
Join Date: Jul 2014
Location: Australia
Posts: 570
Thanks: 348
Thanked 292 Times in 213 Posts
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 by Blonde Angel; 10-12-2015 at 10:25 PM.
Reply With Quote
The Following User Says Thank You to Blonde Angel For This Useful Post:
MAB (10-30-2015)
  #36  
Old 10-12-2015, 10:17 PM
Esteemed Pillar of the Community
 
Join Date: Jul 2014
Location: Australia
Posts: 570
Thanks: 348
Thanked 292 Times in 213 Posts
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 by Blonde Angel; 10-12-2015 at 10:22 PM. Reason: links not correct
Reply With Quote
  #37  
Old 10-15-2015, 05:57 PM
Zoe's Avatar
Zoe Zoe is offline
Alternative Research Encyclopedia
 
Join Date: Mar 2005
Location: Kentucky-Where the Bluegrass is very green
Posts: 662
Thanks: 45
Thanked 207 Times in 109 Posts
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!
__________________

Zoe

"One should never believe any experiment until it has been proven by theory."--Sir Authur Eddington
Reply With Quote
  #38  
Old 10-15-2015, 07:02 PM
Zoe's Avatar
Zoe Zoe is offline
Alternative Research Encyclopedia
 
Join Date: Mar 2005
Location: Kentucky-Where the Bluegrass is very green
Posts: 662
Thanks: 45
Thanked 207 Times in 109 Posts
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/ar...ith-autism.htm
__________________

Zoe

"One should never believe any experiment until it has been proven by theory."--Sir Authur Eddington
Reply With Quote
The Following User Says Thank You to Zoe For This Useful Post:
Blonde Angel (10-19-2015)
  #39  
Old 10-16-2015, 03:22 PM
Super Moderator / Thank You Queen
 
Join Date: Jun 2005
Location: Massachusetts
Posts: 16,349
Thanks: 938
Thanked 7,272 Times in 5,362 Posts
Hey Blonde Angel, sorry just saw your question about links regarding theanine and seizures. See http://www.maneyonline.com/doi/abs/1...12Y.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.
Reply With Quote
The Following User Says Thank You to Nakamova For This Useful Post:
AlohaBird (10-16-2015)
  #40  
Old 10-16-2015, 03:32 PM
MAB's Avatar
MAB MAB is offline
Esteemed Pillar of the Community
 
Join Date: Oct 2013
Location: Ohio, USA
Posts: 926
Thanks: 445
Thanked 274 Times in 231 Posts
Originally Posted by Zoe View Post:
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/ar...ith-autism.htm
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.
Reply With Quote
Reply

« 4yo with epilepsy | - »
Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are On


Similar Threads
Thread Thread Starter Forum Replies Last Post
Autism and Epilepsy Pbaker The Kitchen 10 08-27-2014 11:11 PM
Epilepsy and general anaesthetic and a slight rant Cherriuz The Kitchen 7 02-24-2013 06:18 PM
Epilepsy and general anaesthetic? lucycherish The Kitchen 11 10-31-2012 03:38 PM
Autism and Epilepsy Starburst The Nursery 23 08-05-2012 07:01 PM
what have been your general experiences during post-ictal states? petero The Kitchen 12 05-15-2011 07:13 PM


All times are GMT -5. The time now is 12:33 PM.


Powered by vBulletin® - Copyright ©2000 - 2019, Jelsoft Enterprises Ltd.
Content Relevant URLs by vBSEO ©2009, Crawlability, Inc.
Copyright 2005 © Measuring Up. ALL rights reserved.