My supplement/drug list for ASD

Discuss autism diets and biomedical treatments of autism.

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luis
Posts: 257
Joined: Thu Sep 25, 2008 8:42 pm

Re: My supplement/drug list for ASD

Postby luis » Wed Oct 25, 2017 2:32 pm

Hi, Fo2,

This post of yours is EPIC and should be put on the top of the list (fix).

I've seen that your son has seizures issues and hypoglycemia, too. Have you ever tried l-carnitine ? I've started giving it to my son (transdermally, because he wouldn't stand it orally) and it's been great for the hypoglycemia.

But, I've read that it can cause seizures in persons that already have this problem. That's why I'm asking you. I wish to suggest it to a mom whose son has big seizures issue (and hypoglycemia), and I'm afraid of causing harm.

What do you say ?

Luis.

Usernametaken
Posts: 4
Joined: Mon Oct 16, 2017 3:54 am

Re: My supplement/drug list for ASD

Postby Usernametaken » Wed Oct 25, 2017 5:48 pm

Interesting list I need to try out. So my son is 2 years old hasn't been diagnosed yet (has an autism diagnosis appointment in a few days from now) but shows a lot of the signs, doesn't speak besides babbling, is fussy most of the time and is throwing tantrums recently. Doesn't do well in playing with toys, he's got his days where he does great some day but most of the time it's a struggle.

So I want to get him on Krill Oil and Rhodiola rosea. The dosage you have listed, not sure how old your kid is, but is that too much for a 2 year old? Should I get him half the dosage?

FatherOf2
Posts: 1623
Joined: Mon Mar 11, 2013 1:37 am

Re: My supplement/drug list for ASD

Postby FatherOf2 » Wed Oct 25, 2017 5:49 pm

Thank you, Luis. We tried L Carnitine long ago. I dont remember seeing anything, positive or negative. I think the dose was too low, about 500mg. Then we switched to Acetyl L Carnitine, same dose, and again nothing. I didnt know that it can cause seizures. I think it would be safe to try. Pretty much anything that improves brain function has a potential to cause seizires: dopamine, serotonin, choline, ATP., or even foline. That is why most antiseizure meds have a cognitive decline side effect. To stay away completely from these brain boosters means that you miss on opportunity to improve autistic symptoms. There are only 3 brainboosters that dont cause seizures: bacopa, vinpocetine and piracetam. I am taking a risk with dopamine right now (Rhodiola), but I am willing to take it because of the positives I have seen. By the way, Rhodiola reduces blood sugar levels, but it doesnt cause any irritability whatsoever but Ashwagandha did. So, it is not as simple. My suggestion is to try L Carnitine. Where do you get transdermal version?

luis
Posts: 257
Joined: Thu Sep 25, 2008 8:42 pm

Re: My supplement/drug list for ASD

Postby luis » Thu Oct 26, 2017 8:22 am

FO2, I make transdermal myself, mixing liquid L-Carnitine from Jarrow with MSM liquid from Trimedica. It has a very good absorption. I also give him coconut oil transdermally. My son has a very bad case of inflammation in his duodenum. The idea of giving supplements transdermally have brought us many improvements.

Nikkie111
Posts: 338
Joined: Thu Sep 24, 2015 6:26 am

Re: My supplement/drug list for ASD

Postby Nikkie111 » Thu Oct 26, 2017 4:34 pm

Fo2 wanted to let you know we've been on cordyceps for nearly two weeks and the gains are really really good. Even my youngest who's hard work had some good progress on it! Buhner has it mainly for brain inflammations - it's his no1 for this- so I wonder if my oldest' cognitive gains is from lowering inflammation or increasing dopamine. God knows! But I do give him now the particular rhodiola that you give us as well and ok he looks and behaves like normal kid. Particularly his interests and social abilities have shot up. On the downside he's tiny but more hyper but prefer this than sleepy look :D

Thanks for the rhodiola tip and for reminding me about cordyceps (which we give in high quantities by the way, 1tsp doesn't do much!)

FatherOf2
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Re: My supplement/drug list for ASD

Postby FatherOf2 » Thu Oct 26, 2017 7:41 pm

Nikkie111 wrote:Fo2 wanted to let you know we've been on cordyceps for nearly two weeks and the gains are really really good. Even my youngest who's hard work had some good progress on it! Buhner has it mainly for brain inflammations - it's his no1 for this- so I wonder if my oldest' cognitive gains is from lowering inflammation or increasing dopamine. God knows! But I do give him now the particular rhodiola that you give us as well and ok he looks and behaves like normal kid. Particularly his interests and social abilities have shot up. On the downside he's tiny but more hyper but prefer this than sleepy look :D

Thanks for the rhodiola tip and for reminding me about cordyceps (which we give in high quantities by the way, 1tsp doesn't do much!)

Thanks. That is great news! I already purchased Cordyceps bag and it is waiting for me to start using it. My son is riding a good wave on Rhodiola. So far the effect is still going. Interestingly, the same brand Perfect has another supplement with Rhodiola and Cordyceps combined slong with Acai.

Nikkie111
Posts: 338
Joined: Thu Sep 24, 2015 6:26 am

Re: My supplement/drug list for ASD

Postby Nikkie111 » Fri Oct 27, 2017 4:38 am

FatherOf2 wrote:
Nikkie111 wrote:Fo2 wanted to let you know we've been on cordyceps for nearly two weeks and the gains are really really good. Even my youngest who's hard work had some good progress on it! Buhner has it mainly for brain inflammations - it's his no1 for this- so I wonder if my oldest' cognitive gains is from lowering inflammation or increasing dopamine. God knows! But I do give him now the particular rhodiola that you give us as well and ok he looks and behaves like normal kid. Particularly his interests and social abilities have shot up. On the downside he's tiny but more hyper but prefer this than sleepy look :D

Thanks for the rhodiola tip and for reminding me about cordyceps (which we give in high quantities by the way, 1tsp doesn't do much!)

Thanks. That is great news! I already purchased Cordyceps bag and it is waiting for me to start using it. My son is riding a good wave on Rhodiola. So far the effect is still going. Interestingly, the same brand Perfect has another supplement with Rhodiola and Cordyceps combined slong with Acai.

I had a look at the one you mentioned with cordyceps and it's only sinesis unfortunately which Buhner is really fond of but the one we used had militaris as well. Also I don't think few capsules are enough I have to say I give a lot :lol: , minimum 2 heaped tablespoons a day! I started last year just wish quarted tsp as I remember someone af another forum had mentioned that it can increase glutamate but that kind of quantity did absolutely nothing!
Also forgot to tell you my oldest started stimming on it for couple of days which was odd as he hasn't done this for over a year but I backed off for a day and he stopped doing it! So like rhodiola we probably shouldn't give daily! But the excitement, energy and interest he has for people, friends toys etc is amazing!!!! He's absolutely amazing on play dates, went to new holiday club and absolutely loved it and I even brought him to my work for good 7 hours and he was a star!! I still have him daily on cycloferon/anamu for NK cells especially on flu season so he already managed a good percentage of his recovery on this, but rhodiola with cordyceps topped it, no words at all!!! Really really worth trying (in gigantic dosages :wink: )
Last edited by Nikkie111 on Fri Oct 27, 2017 4:43 am, edited 1 time in total.

Marya
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Re: My supplement/drug list for ASD

Postby Marya » Fri Oct 27, 2017 4:40 am

Fatherof2, are you still giving your son NAC? I'm happy for him :D
Have you thought of giving a bit of everything, like something for dopamine, and something for choline at the same time?
I have asked in my thread if your son has CHRNA5 mutations but you seem that you didn't see my question.

FatherOf2
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Re: My supplement/drug list for ASD

Postby FatherOf2 » Sat Oct 28, 2017 2:32 am

Marya wrote:Fatherof2, are you still giving your son NAC? I'm happy for him :D
Have you thought of giving a bit of everything, like something for dopamine, and something for choline at the same time?
I have asked in my thread if your son has CHRNA5 mutations but you seem that you didn't see my question.

Hi Marya, my son doesn't have CHRNA5 mutation, he has triplication in CHRNA7 gene. I am giving him a bit of everything: dopamine, choline (in Krill oil), creatine, Bacopa. I stopped NAC for a month. I will start it again. Right now, after visiting our DAN doctor, I decided to follow his recommendation to increase Bumetanide to 1mg 2x/day. We started today. He showed me a recent article on Bumetanide from French doctors which reported significant improvements in ASD symptoms at 1mg 2x/day. His dose was 0.5mg 2x/day for about 8 months, and I never saw anything. This evening, my son was going to the toilet every 10 minutes. So, at least the diuretic part is working. If Bumetanide fails to improve my son like in clinical trials, I will stop it completely. I am already giving him too many meds. Every med has to earn its stay.

Marya
Posts: 178
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Re: My supplement/drug list for ASD

Postby Marya » Sat Oct 28, 2017 8:26 am

FatherOf2 wrote:Hi Marya, my son doesn't have CHRNA5 mutation, he has triplication in CHRNA7 gene. I am giving him a bit of everything: dopamine, choline (in Krill oil), creatine, Bacopa. I stopped NAC for a month. I will start it again. Right now, after visiting our DAN doctor, I decided to follow his recommendation to increase Bumetanide to 1mg 2x/day. We started today. He showed me a recent article on Bumetanide from French doctors which reported significant improvements in ASD symptoms at 1mg 2x/day. His dose was 0.5mg 2x/day for about 8 months, and I never saw anything. This evening, my son was going to the toilet every 10 minutes. So, at least the diuretic part is working. If Bumetanide fails to improve my son like in clinical trials, I will stop it completely. I am already giving him too many meds. Every med has to earn its stay.

Hi FatherOf2, ah I see. But how did you know about the triplication in CHRNA7 gene?
I think it is the same either CHRNA7 or CHRNA5 mutation would cause less choline in the brain. I have started taking Black Seed oil which is supposed to boost choline. Have you tried it? If not I would advise you to give it a try, it is also anti microbial so you won't go wrong.
Was there any reason to stop NAC? or you just want to avoid the tolerance? I'm still taking it but I'm thinking to stop it for a while as I'm feeling that the results are wearing off.
Good luck with Bumetanide! I never heard of it but I will google it.

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

Re: My supplement/drug list for ASD

Postby FatherOf2 » Mon Oct 30, 2017 4:55 pm

Marya wrote:Hi FatherOf2, ah I see. But how did you know about the triplication in CHRNA7 gene?
I think it is the same either CHRNA7 or CHRNA5 mutation would cause less choline in the brain. I have started taking Black Seed oil which is supposed to boost choline. Have you tried it? If not I would advise you to give it a try, it is also anti microbial so you won't go wrong.
Was there any reason to stop NAC? or you just want to avoid the tolerance? I'm still taking it but I'm thinking to stop it for a while as I'm feeling that the results are wearing off.
Good luck with Bumetanide! I never heard of it but I will google it.

I learned about CHRNA7 triplication through Quest's Chromosomal Microarray, Postnatal, ClariSure® Oligo-SNP test: http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=16478
I stopped NAC because my son had SIBs a few days after starting it. It could be coincidental, but NAC is known to suppress DAO and cause mast cell degranulaion. I will try it again one day, but I am not rushing. I haven't tried Black Seed oil. I will read about it.

lovemyson91
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Joined: Thu Oct 26, 2017 6:06 pm

Re: My supplement/drug list for ASD

Postby lovemyson91 » Tue Oct 31, 2017 3:15 am

wow what an amazing post how long have you been on the recovery road and how long did trail and error last .

FatherOf2
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Re: My supplement/drug list for ASD

Postby FatherOf2 » Tue Oct 31, 2017 9:33 am

lovemyson91 wrote:wow what an amazing post how long have you been on the recovery road and how long did trail and error last .

I started in 2011 when my son was diagnosed with autism at age of 2. I haven't tried everything on the list of the first post. I give about 1-2 weeks of trial of a new supplement. In most cases it is just 2-3 days and always on weekend. If nothing happens in those 2-3 days or the effect is clearly negative, I stop. There is no reason to stick to a supplement/drug that negatively affect the school performance and behaviors in public. I don't believe in giving supplements or drugs long trials hoping in some sudden effect past 1-2 weeks. Most supplements or drugs except for vitamins, antibacterials and antifungals have a short half life in the body. So, if they didn't produce the results within just a couple of days, they are duds.

I am currently 'recovering' my son from the weekend of trying an increased dose of Bumetanide. My son spent past 8 months on 0.5mg 2x/day and the results were questionable. This weekend, following the advice of our MAPS doctor, I increased the dose to 1mg 2x/day and he became more stimmy, his speech and reading became worse. It was quite a visible negative effect. So, 'good bye Bumetanide'.

Nikkie111
Posts: 338
Joined: Thu Sep 24, 2015 6:26 am

Re: My supplement/drug list for ASD

Postby Nikkie111 » Tue Oct 31, 2017 9:48 am

Well done Fo2, nice to cross this off your list. You might end up getting more success from naturals at the end

Also not sure you have LDI in your list, you might want to add it, it's a really interesting technique just started it with my youngest and it's funny how we saw results in speech and communication already. It's really really worth looking into it

Good luck!

Hope1222
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Joined: Wed Nov 01, 2017 4:09 pm

Re: My supplement/drug list for ASD

Postby Hope1222 » Wed Nov 01, 2017 5:10 pm

I am trying to research and buy some of the vitamins and products suggested here and one of them is Arachidonic Acid. I just can't find an appropriate one for my son who is 7 years old and weighs about 57-58 lbs. Could you suggest a link please? Thank You

Hope1222
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Joined: Wed Nov 01, 2017 4:09 pm

Re: My supplement/drug list for ASD

Postby Hope1222 » Wed Nov 01, 2017 6:11 pm

Hi, could you help me with my son's stem behavior of jumping with arms folded, and echolalia with repetitive language? he is 7 years old weighs about 57-58 lbs. I was thinking of starting him with NAC, B complex, Selenium 200mg, Vitamin C, Rhodiola Rosea 200 mg. Please post links if you suggest a medication, just incase its hard to find.Thank you

luis
Posts: 257
Joined: Thu Sep 25, 2008 8:42 pm

Re: My supplement/drug list for ASD

Postby luis » Sun Nov 05, 2017 1:41 pm

Hi Fo2,

Have you ever tried BH 4 ? It reduces ammonia and increases dopamine, so it helps with speech.

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

Re: My supplement/drug list for ASD

Postby FatherOf2 » Sun Nov 05, 2017 10:49 pm

It is interesting that you asked. 2 weeks ago, I sawe our MAPS doctor. I asked him for BH4 prescription. He gave me a prescription for a compounded low-dose BH4, not Kuvan, which is an orphan drug and hard to get unless you have a PKU. I contacted Lee Silsby pharmacy about the compounded BH4 and they told me that it is no longer available in USA. They haven't been able to find it anywhere, and that is true for any compounding pharmacy. I think BioMarin, the company making Kuvan, has something to do with disappeared other sources of BH4. If you know where I can get BH4, please let me know.

FatherOf2
Posts: 1623
Joined: Mon Mar 11, 2013 1:37 am

Re: My supplement/drug list for ASD

Postby FatherOf2 » Sun Nov 05, 2017 11:30 pm

Hope1222 wrote:Hi, could you help me with my son's stem behavior of jumping with arms folded, and echolalia with repetitive language? he is 7 years old weighs about 57-58 lbs. I was thinking of starting him with NAC, B complex, Selenium 200mg, Vitamin C, Rhodiola Rosea 200 mg. Please post links if you suggest a medication, just incase its hard to find.Thank you

The only thing that helped my son's stims was Namenda. You can only get it by prescription. Your list is pretty good. Selenium should be 200mcg, not mg. You should also add vit E (Jarrow Toco-Sorb), which works together with Selenium, and ~1g of EPA-rich fish oil (brand doesn't matter, but I like Nordic Naturals EPA XTRA). I like Rhodiola rosea on that list a lot, but it doesn't reduce stimming and may make some behaviors worse. You can try NAC, it is not going to kill him. If hyperactivity is a problem, the same Namenda should do a good job and help with language too. Guanfacine (0.75mg in the evening, 0.25mg in the morning) is also good for hyperactivity, but it won't reduce stimming or have any other positive effects. Your son may become sleepy on it.

Hope1222
Posts: 5
Joined: Wed Nov 01, 2017 4:09 pm

Re: My supplement/drug list for ASD

Postby Hope1222 » Mon Nov 06, 2017 12:22 am

How do you obtain a request to get a prescription for Nemenda? Any suggestions? Regular pediatricians won’t do it unless we find a way to convince them, so any ideas? And any idea on the dosage for 7 year old boy weighing 58lbs? It’s for stims.
Thanks a lot!
Hope1223


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