Jump to content
ACN Latitudes Forums

My Ren is starting treatment. Questions?


Recommended Posts

I been around and reading your posts. You got me motivated to find a doctor that would treat for PANDAS.

 

I thought we would have to travel hours, but we got lucky and found a local pedatrician, that treats ASD biomedically and treats PANDAS. Two things my daughter, Ren, needs help with. The doctor ran several tests. One of the tests the doc ran was for a C677T mutation on the MTHFR gene. It was postive. Ren also has very high histamine levels. This points to undermethylation and decreased seretonin = OCD/anxiety. She's starting folic acid supplements (5-MTHF specifically). Anyone else familiar with this?

 

My daughter also had elevated mycoplasma titers along with her history of strep and PANDAS, so we are going to do a trial of Zithro. The doc also suggested that we might try Valtrex. That was a new one for me. Has anyone else's doctors suggested an antiviral like Valtrex?

 

These are just a couple of things what came up during the lab reviews. Alot of it I was expecting, but I had never heard of treating for undermethylation or with an antiviral.

 

Love to hear your experiences.

Link to post
Share on other sites

I been around and reading your posts. You got me motivated to find a doctor that would treat for PANDAS.

 

I thought we would have to travel hours, but we got lucky and found a local pedatrician, that treats ASD biomedically and treats PANDAS. Two things my daughter, Ren, needs help with. The doctor ran several tests. One of the tests the doc ran was for a C677T mutation on the MTHFR gene. It was postive. Ren also has very high histamine levels. This points to undermethylation and decreased seretonin = OCD/anxiety. She's starting folic acid supplements (5-MTHF specifically). Anyone else familiar with this?

 

My daughter also had elevated mycoplasma titers along with her history of strep and PANDAS, so we are going to do a trial of Zithro. The doc also suggested that we might try Valtrex. That was a new one for me. Has anyone else's doctors suggested an antiviral like Valtrex?

 

These are just a couple of things what came up during the lab reviews. Alot of it I was expecting, but I had never heard of treating for undermethylation or with an antiviral.

 

Love to hear your experiences.

 

 

i have asked our dan about using valtrex..as per things i have read on other autism sites...

no go so far......but on a thought..if myco p has no wall, i wouldn't be a bacteria and therefore maybe valtrex could help get some other part of it...i think valtrex can be used for several viral infections

 

So folic acid specifically...or would any B's do...or maybe b12 so many report good things with..

i would thinkg the folic acid was going for the undermethylation

 

Mary....

Dr K recommends Folic after ivig????

why???

why not before????

 

please keep us updated..

Link to post
Share on other sites

I just happened to be reading a yahoo autism site and there is a valtrex group

http://health.dir.groups.yahoo.com/dir/Health___Wellness/Support/Diseases_and_Conditions/Autism

 

or just google it

 

I think we can learn alot from the autism groups and vice versa.

 

Thanks for the Valtrex link. Since Ren has been dx with both ASD and PANDAS, I guess her doctor is looking at this from both angles.

Link to post
Share on other sites

Not familiar with the folic acid piece other than to say that folic acid was one of the post IVIg supplements reommended by Dr K for our dd12.

Mary

frm Michigan

 

According to her doctor, the folic acid to be supplemented in the form of 5-MTHF because of the genetic mutation. From what I've read so far, this is a fairly common mutation. The mutation disrupts the enzyme function that breaks down folic acid into the form that is needed to "fuel the brain." The 5-MTHF form of folic acid is what is used for many subsequent prosseses that "help drive" neurotransmitter function (serotonin & dopamine), methylation, and "protect against too much histamine."

 

Hope this maks sense. I'm still trying to understand it myself.

Link to post
Share on other sites

I been around and reading your posts. You got me motivated to find a doctor that would treat for PANDAS.

 

I thought we would have to travel hours, but we got lucky and found a local pedatrician, that treats ASD biomedically and treats PANDAS. Two things my daughter, Ren, needs help with. The doctor ran several tests. One of the tests the doc ran was for a C677T mutation on the MTHFR gene. It was postive. Ren also has very high histamine levels. This points to undermethylation and decreased seretonin = OCD/anxiety. She's starting folic acid supplements (5-MTHF specifically). Anyone else familiar with this?

My son has the same thing! Would you mind sharing dosage/weight for the 5-MTHF (and maybe brand/source too?)

 

Thanks!

Edited by mati's mom
Link to post
Share on other sites

I been around and reading your posts. You got me motivated to find a doctor that would treat for PANDAS.

 

I thought we would have to travel hours, but we got lucky and found a local pedatrician, that treats ASD biomedically and treats PANDAS. Two things my daughter, Ren, needs help with. The doctor ran several tests. One of the tests the doc ran was for a C677T mutation on the MTHFR gene. It was postive. Ren also has very high histamine levels. This points to undermethylation and decreased seretonin = OCD/anxiety. She's starting folic acid supplements (5-MTHF specifically). Anyone else familiar with this?

My son has the same thing! Would you mind sharing dosage/weight for the 5-MTHF (and maybe brand/source too?)

 

Thanks!

 

Here's the link to the brand that was suggested: http://www.thorne.com/Products/Neurological-Support/prd~B129.jsp. They give a good explaintion of the 5-MTHF. Dosage is a good question. She didn't tell me, and I forgot to ask.

Link to post
Share on other sites

My son's doctor prescribed a 4-ingredient cream which is directly absorbed through the skin because he believes that his gut is not properly absorbing the vitamins that support methyation. It includes: methyl folate, methyl B-12, P5P (Vit B6), and vitamin D.

 

 

That makes sense, because so many kids have gut issues. Is it a compounded cream? I've heard of sublingual, but not a topical cream?

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...