Autism & Epilepsy & General Epilepsy Experiences

Blonde Angel

Stalwart
Messages
581
Reaction score
1
Points
88
I sorry 0pad doing its own thing.just go to show news can be funny thing my news gave a different slant and so do the boy I seen him interviwue very different version andsorry but I tend to agree with him
This making me think,if child js autisc ande genius then education has to be very different
I do think that teaching needs a major overhaul with kids on the ASD.
While the ultimate goal is their child is happily integrated into mainstream schooling and is top on the wish -list for most parents of kids with autism.

Genius or not, the push for inclusion in schools has not had some social and educational successes that many parents expected for their kids.

The choice for parents in West Australia is currently mainstream or a special school (special schools used for those with higher medical needs and / or challenging behaviours) and in many cases neither is the ideal solution which is why some parents choose to home-school.

Its still hit and miss. :(

Schools are not exactly set up to deal with the sensory and anxiety issues associated with ASD.
 

Andrew

Stalwart
Messages
208
Reaction score
8
Points
63
One can get tested for this MTHFR variation.

What is relevant to my situation for my child is this:

MTHFR and anxiety. People with Autism do have issues with anxiety.

MTHFR refers to methylenetetrahydrofolate gene.
Hi Blonde Angel,

You may also be interested in the following article entitled "Riboflavin and Methylenetetrahydrofolate Reductase":

https://www.ncbi.nlm.nih.gov/books/NBK6145/
 

Andrew

Stalwart
Messages
208
Reaction score
8
Points
63
Look into relevance of Glutathione in Autism.. glutathione does have a role in protecting the brain cells from mercury.
Glutathione reductase is a FAD-dependent enzyme, which is sensitive to riboflavin deficiency.
https://www.ncbi.nlm.nih.gov/books/NBK6145/

Also see:

Glutathione reductase (EC 1.8.1.7) catalyzes the reduction of glutathione disulfide (GSSG) to the sulfhydryl form glutathione (GSH), which is a critical molecule in resisting oxidative stress and maintaining the reducing environment of the cell.
https://en.wikipedia.org/wiki/Glutathione_reductase

Impaired transsulfuration and oxidative stress in ASD: Improvement with targeted nutrition
https://www.autism.com/pro_research_oxidativestress#sthash.32oEyWpT.dpbs

Also see:

http://ajcn.nutrition.org/content/75/4/616.full

WARNING! (photosensitivity) The next URL uses black text on a bright green background.

http://www.freegrab.net/cofactors1.htm

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

Blonde Angel

Stalwart
Messages
581
Reaction score
1
Points
88
Thanks Andrew for your links.

Another thing to think of is how is glutathione is made?? Its made from 3 amino acids called 1.glycine, 2. Cysteine and 3. Glutamate.

So yes, one of the most important contributors for protecting our brains is glutathione.

The brain is supposed to make neurotransmitters like GABA, dopamine, noradrenaline, melatonin and serotonin. It has to rely on the DIGESTIVE TRACT to supply the amino acids.

Do psychiatrists think of that?
Do pharmacologists ever think of that?
Do those prescribing antidepressants, meds for ADD, anxiety etc think of that?
:)
 

Blonde Angel

Stalwart
Messages
581
Reaction score
1
Points
88
Update:
Well, its busy with family stuff, had some holidays, most nothing to do with epilepsy stuff.

Had a great run for a while with no seizures but had 3 seizures in December, seems to be during the bedtime as there is blood stains on her pillow. So timing is different ,, not day time and she seems to be biting her tongue during seizure which would hurt.
She seems to eat very slowly after these episodes.
The anxiety to living in holiday houses whilst on holiday does impact her wellbeing, but we do as a family do holiday for the summer time. We cant let epilepsy and autism rule.

The good thing is she has shown greater interest in the treadmill and cross trainer and is doing 45 mins stints, 3-4 times weekly which is great and I'm proud for her persisting. I have a small gym with TV set up in one room.
 

ggincali

New
Messages
5
Reaction score
0
Points
0
Hi! So nice to see this forum for parents of children with ASD and epilepsy. Great news about your child showing interest in exercise equipment.
 

Blonde Angel

Stalwart
Messages
581
Reaction score
1
Points
88
Well, its been incredibly busy, but in a good way.. seizure activity is about one to twice a month. The days leading up I do notice my girl is very unsettled agitated and not her usual happy self. I have no doubt she feels yuk. I do give her pain relief as she is very uncomfortable.

She is definitely feeling something crappy.
 

Nakamova

Super Moderator / Thank You Queen
Moderator
Messages
16,782
Reaction score
235
Points
173
Glad to hear that her seizures are relatively limited B.A. Hope things are going well with you.
 

Blonde Angel

Stalwart
Messages
581
Reaction score
1
Points
88
Hey
its been a while and its been going really well.
My daughter's seizure activity is about one every 6 weeks and yeah its does take a lot out of her to rest and recover.
We are in the process of using updated technology for her communication device in helping her getting her needs and wants met.
Life as a family has been up and down but that's life, we are all together through the good, bad and ugly.

Using hemp oil for a while.

Sometimes the bowels are loose but not often, have worked out most foods that set her off. Good and bad days, but mostly good.

Have never seen a 15yr old so happy to use a cross trainer but she loves it, the tread mill I have to watch over her, but the cross trainer she is independent... we have great fun with music blaring :)
 

Nakamova

Super Moderator / Thank You Queen
Moderator
Messages
16,782
Reaction score
235
Points
173
Good and bad days, but mostly good.
That's great to hear BA!

Have never seen a 15yr old so happy to use a cross trainer but she loves it
I wish I was that disciplined and motivated. :)
 

clutzy

New
Messages
3
Reaction score
0
Points
0
Autism and Epilepsy

Hi guys, just found this thread and I'm so happy to talk to other parents who share this tough journey!!! My son is about to turn 17 so we are in the throws of adolescence in addition to the autism and epilepsy and limited communication. It's the perfect storm for behaviors! He started having GTC seizures 2 years ago and he was started on Keppra, did ok with it for 8 months but started withdrawing at school, increased auditory sensitivity and then the aggression and rage hit! Wow, couldn't get off it soon enough! Then came Lamictal (increased stimming and compulsions) then Trileptal ( all the same and still aggressions), then Dilantin, Vimpat and Briviact. Also tried Zoloft with the Lamictal and Resperidone added with the Vimpat. He is currently on Vimpat, Briviact and small dose Resperidone. And of course, all these med and dosage changes took weeks to titrate up and down and off. Never making too many changes at the same time. Meanwhile his life is ticking by.
We are still dealing with stimming, compulsions and moderate aggressions. We are all getting very anxious about school starting in a few weeks and I just don't know that these meds are right. He's had a few absent seizures recently but nothing more. The docs want to get him off Resperidone. Do we add something for the compulsions or anxiety. I wish he could tell us how he feels!!!!!
 

gymrat827

New
Messages
229
Reaction score
0
Points
0
Hi guys, just found this thread and I'm so happy to talk to other parents who share this tough journey!!! My son is about to turn 17 so we are in the throws of adolescence in addition to the autism and epilepsy and limited communication. It's the perfect storm for behaviors! He started having GTC seizures 2 years ago and he was started on Keppra, did ok with it for 8 months but started withdrawing at school, increased auditory sensitivity and then the aggression and rage hit! Wow, couldn't get off it soon enough! Then came Lamictal (increased stimming and compulsions) then Trileptal ( all the same and still aggressions), then Dilantin, Vimpat and Briviact. Also tried Zoloft with the Lamictal and Resperidone added with the Vimpat. He is currently on Vimpat, Briviact and small dose Resperidone. And of course, all these med and dosage changes took weeks to titrate up and down and off. Never making too many changes at the same time. Meanwhile his life is ticking by.
We are still dealing with stimming, compulsions and moderate aggressions. We are all getting very anxious about school starting in a few weeks and I just don't know that these meds are right. He's had a few absent seizures recently but nothing more. The docs want to get him off Resperidone. Do we add something for the compulsions or anxiety. I wish he could tell us how he feels!!!!!

Is he unable to speak..? You mentioned communication issues..?

How is his anger/aggression on briviact..?? I was on keppra and was a mad man, now looking into Briviact.
 

clutzy

New
Messages
3
Reaction score
0
Points
0
He has motor planning issues so his speech is slow and limited. He lacks confidence and sometimes you want to reach in and pull it out! LOL! Especially when it somes to his emotions or how he feels, I don't think he always knows how to describe things. And he certainly does not understand why he feels the way he does. I've never wanted to blame it on the meds for fear he won't take them. he takes them so easily and I'm thankful we don't have that battle. He has ProLoQuo on an ipad but he does not use it often at all. On Keppra we saw true rage, in fact, that's how I described it before I knew there was such a thing as "Keppra Rage", (thank you internet). On most of these meds his anger is somewhat sudden and involves grabbing hair, and taking half hearted swings at us. He doesn't always connect and it's not hard, pinching also. The frequency might be once maybe twice a week. He responds better now to sit down and time out so the anger is shorter in duration and moderate. We can usually see when the frustration is building. I think the latest aggressions are fed by anxiety of school approaching. Good luck if you decide to try it. I know his doctor was very hopeful that he would feel better on it.
 

Phoebe

New
Messages
4
Reaction score
0
Points
0
Do you see any connection with the timing of her seizures and her menstrual period? You may know this, but the rise in estogen causes more vulnerability to seizure activity. Those seizures are called Catamenial.
 
Last edited:

clutzy

New
Messages
3
Reaction score
0
Points
0
Hi Phoebe, I am aware of the hormonal connections to seizures. I have a son that has autism and epilepsy and although he has hormones of his own they are not female.
 
Top