My supplement/drug list for ASD

Discuss autism diets and biomedical treatments of autism.

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FatherOf2
Posts: 1618
Joined: Mon Mar 11, 2013 1:37 am

Re: My supplement/drug list for ASD

Postby FatherOf2 » Mon Nov 06, 2017 12:36 am

You need to find a MAPS (or DAN) doctor. There is a list of them somewhere on internet, for every country. Dose of Namenda is 10-20mg/day. You need to talk to a doctor.

luis
Posts: 255
Joined: Thu Sep 25, 2008 8:42 pm

Re: My supplement/drug list for ASD

Postby luis » Mon Nov 13, 2017 9:21 am

FatherOf2 wrote: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.


Fo2, I've found this:

https://irc.bio/product/tetrahydrobiopt ... ked/ref/2/

They say that they sell only for research purposes, but anyone can buy it, according to this:
https://selfhacked.com/blog/tetrahydrob ... y/#Buy_BH4

I've never bought from them.

FatherOf2
Posts: 1618
Joined: Mon Mar 11, 2013 1:37 am

Re: My supplement/drug list for ASD

Postby FatherOf2 » Mon Nov 13, 2017 10:14 am

I found BH4 from Hopewell pharmacy. It is quite expensive even compounded at 2.5mg. It is on its way. I will let you know.

Maggy
Posts: 12
Joined: Sat Oct 21, 2017 3:53 pm

Re: My supplement/drug list for ASD

Postby Maggy » Mon Nov 13, 2017 11:15 am

Hello Fof2,
What is BH4?will this one help with speech?
Do we need prescription for this drug?

Thanks
Maggy

FatherOf2
Posts: 1618
Joined: Mon Mar 11, 2013 1:37 am

Re: My supplement/drug list for ASD

Postby FatherOf2 » Mon Nov 13, 2017 12:55 pm

Maggy wrote:Hello Fof2,
What is BH4?will this one help with speech?
Do we need prescription for this drug?

Thanks
Maggy

BH4 is produced inside your body and is responsible for production of serotonin and dopamine. Some MTHFR mutations (like MTHFR A1298C +/+ in my son) reduce BH4 production, which leads to low levels of those two neurotransmitters and high ammonia levels. My son exhibits all symptoms of low serotonin (anxiety) and dopamine (lack of motivation and poor focus). His blood ammonia levels are above normal too. Some people who take BH4 report "calm and focused" state. But some report increased hyperactivity and nothing else. I don't know if BH4 helps with speech. I wouldn't try BH4 if my son didn't have that mutation. A more common way to address the BH4 deficiency is to take methyl folate, but it never did anything for my son.

You need a prescription for it and even with the prescription BH4 is hard to get. If you can find a "cooperating" doctor, who can prescribe Kuvan, that is the way to go, but your insurance company will scrutinize you because the annual cost of Kuvan is $200k. Currently, Kuvan is only approved for PKU.

Nikkie111
Posts: 333
Joined: Thu Sep 24, 2015 6:26 am

Re: My supplement/drug list for ASD

Postby Nikkie111 » Mon Nov 13, 2017 4:46 pm

luis wrote:
FatherOf2 wrote: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.


Fo2, I've found this:

https://irc.bio/product/tetrahydrobiopt ... ked/ref/2/

They say that they sell only for research purposes, but anyone can buy it, according to this:
https://selfhacked.com/blog/tetrahydrob ... y/#Buy_BH4

I've never bought from them.

Yes I used it, it did nothing. Plus it had a warning about human consumption which freaked me out so I stopped after a few days
FYI the bottle provided is tiny!!!

Marya
Posts: 173
Joined: Tue Feb 21, 2017 4:14 pm

Re: My supplement/drug list for ASD

Postby Marya » Tue Nov 14, 2017 7:56 am

FatherOf2 wrote:BH4 is produced inside your body and is responsible for production of serotonin and dopamine. Some MTHFR mutations (like MTHFR A1298C +/+ in my son) reduce BH4 production, which leads to low levels of those two neurotransmitters and high ammonia levels. My son exhibits all symptoms of low serotonin (anxiety) and dopamine (lack of motivation and poor focus). His blood ammonia levels are above normal too. Some people who take BH4 report "calm and focused" state. But some report increased hyperactivity and nothing else. I don't know if BH4 helps with speech. I wouldn't try BH4 if my son didn't have that mutation. A more common way to address the BH4 deficiency is to take methyl folate, but it never did anything for my son.

You need a prescription for it and even with the prescription BH4 is hard to get. If you can find a "cooperating" doctor, who can prescribe Kuvan, that is the way to go, but your insurance company will scrutinize you because the annual cost of Kuvan is $200k. Currently, Kuvan is only approved for PKU.

Hi Fatherof2, Have you ever get your son folic acid tested? I have MTHFR +/- rs1801131 and in the past I had low level of folic acid, my GP advised me to take folic acid supplements because she didn't know that I have that mutation, and I didn't know either. However I didn't benefit from that supplements and I stopped it. Now my folic acid is normal, thank God! In case it was low I would supplement methyl folate. I think for people who have this mutation, taking usual folic acid make things worse! Our bodies can’t process it, and thus, increas our own toxicity.
Also I have read here that bread and some pasta have folic acid so it wouldn't suit people with this mutation.

FatherOf2
Posts: 1618
Joined: Mon Mar 11, 2013 1:37 am

Re: My supplement/drug list for ASD

Postby FatherOf2 » Tue Nov 14, 2017 10:06 am

Thanks, Marya. I didn't test for folic acid. I rely more on trying things because tests can be ambiguous.

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

Re: My supplement/drug list for ASD

Postby Hope1222 » Tue Nov 14, 2017 4:38 pm

I am trying to find a MAOS / DANS Dr. after reading from this website but I can’t find one around my area in CA, any tips or links?
What is a MAPS or DANS Dr ?

FatherOf2
Posts: 1618
Joined: Mon Mar 11, 2013 1:37 am

Re: My supplement/drug list for ASD

Postby FatherOf2 » Tue Nov 14, 2017 11:35 pm

Hope1222 wrote:I am trying to find a MAOS / DANS Dr. after reading from this website but I can’t find one around my area in CA, any tips or links?
What is a MAPS or DANS Dr ?

There are lots of MAPS/DAN doctors in California, some of the best in USA: Dan Rossignol (Irvine and San Francisco), Jerry Kartzinel (Irvine), Michael Chez (Sacramento), Michael Goldberg (Los Angeles)

FatherOf2
Posts: 1618
Joined: Mon Mar 11, 2013 1:37 am

Re: My supplement/drug list for ASD

Postby FatherOf2 » Sat Nov 18, 2017 11:49 am

I added Lysine to my son's stack. I am giving him 500mg in the evening together with Taurine. The reason for adding Lysine is because my son started spending about 1 hour in his bed jumping, kicking, talking instead of going to sleep. Melatonin helped in these situation, but I don't like Melatonin. Lysine improves function of GABA receptors (makes them more sensitive) in a way similar to barbiturate, which leads to calmness. It also increases serotonin levels. Not to mention Lysine's ability to fight herpes virus. Adding Lysine definitely helped my son to fall asleep faster.


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