Peeling Back the Layers

[mommakath]

OKAY…got some interesting blood work back today as I am on my quest to see why we have lost my son again after successful PANDAS and Lyme treatment and no symptoms for over 4 months. DS10 got exposed to strep and hasn’t come back yet. So, he went from wanting to kill himself he was so miserable, to 100% complete turnaround for 5 months after IVIG, to skydiving off the cliff and losing all gains after being exposed to strep. Changes in meds, yeast treatment, IVIG, stopping meds and etc. to no avail. There was a 50-60% gain after Cipro for a month and IVIG #5, but we are still fluctuating daily and no where near the 100% we had.

 

 

So, in my journey to find health for my son again, I turned to a DAN, functional medicine Autism doc, (even though we are not autistic) who happens to be ‘much more local’ than our PANDAS and Lyme docs. We are adding her into the mix to work with them as I needed a pediatrician who could handle this unique disease. She is working on bringing IVIG into my home (versus monthly trips up north) – this was my main reason for seeing her. But, God has used her to unravel other layers to the onion. Please allow me to share with you…….

 

 

As found in many autistic kids, and she is finding in many PANDAS kids, she suspected a methylation issue. Looks like she is right on. This leads to glutamate issues and etc. Our bloodwork confirmed a MTHFR mutation, which interferes in this whole process. So, this may be the answer to a lot of the issues we face. It may not fix it all, but it is a breakdown in the body that can’t be ignored. Without the ability to make methyl B12, sulfation doesn’t happen, detoxification doesn’t happen, and Neuropsychiatric Disorders result.

 

 

Under the care of a knowledgeable doctor, these things can be fixed relatively easily by diet and supplementation. There are meds to avoid (like Tylenol and Bactrim DS) and we’ve been using those. So, for any interested, there’s a link from Dr. J’s website about MTHFR ( www.drjoneskids.com) – click on MTHFR down on the right side. Our DAN doc, Dr. Buckley, has written a book called “Healing Our Autistic Children” (http://www.juliebuckley.com/) that talks about a lot of this – highly recommend it – an easy read on my non-scientific level.

 

 

I’ve always felt that we would not be as far along on this journey if we didn’t have others sharing their gains in knowledge with us – and their loving nudges in our sides to keep exploring and looking. For this reason, I share this with you. Maybe it’s the missing piece in your journey to wellness as well. I am thankful for each new little piece of valuable information that can heal my child(ren). I’ve always believed God gave these precious, unique kids to us because He knew we would never give up!

 

Blessings to all!

[MomWithOCDSon]

Very cool, thanks Katherine. If you poke around the threads a bit, you'll see that several of us have happened upon this whole methylation piece of the puzzle in recent weeks and are having some success via that route. So I, for one, am glad to have someone else on the forum to bounce things off of! I'm looking forward to checking out Dr. Buckley's book; just starting on Amy Yasko's, which has some of the very same information.

 

Glad you're having some success with the methylation protocol. Please keep us informed!

[BoyIowa]

That is great news. We are going to see a DAN doctor on Friday that sees mostly autistic kids, but has signed up to learn about and treat PANDAS kids. They said that they have had good results with Methyl b12 in PANDAS kids. I am excited about our appointment!!!!

[LNN]

Katherine,

So happy to hear the appt went well! Methylation has played an important role for us (my DD has the MTHFR C677 mutation, my DS does not - but has methylation issues at other points in the pathway). It is not a quick fix - it can take a few weeks/months for things to re-balance and sometimes when you re-start a blocked pathway, there's a period of behavior blips as the junk gets cleared out of the pipeline. But I hope your DS finds this to be one of his keys to more lasting recovery! Sounds like you have much to be optimistic about, including less traveling! Please keep us posted.

Laura