Whew, finally getting relief.....

[Dedee]

Well you all know that we have had so much trouble with my 8 yr old daughter who has had PANS since Nov 2010. She has resistant Myco p and has been on antibiotics for over a year. Two HD IVIG's brought some gains but then we had regression again. She was tested a couple of months ago and found to be positive for the MTHFR gene mutation. This isn't extrememly rare, but can still pose some issues with methylation (still learning about that), and absorption of methyl folate and B vitamins. The Integrative Medicine practitioner wanted to see what Dr. M suggested since she ordered the test and so we faxed those results but haven't heard back yet. In the mean time (about a month ago), we started her on methyl folate, and slowly introducing Enhansa. We also did a week "refresher" at Rothman CBT program in March. Things have been going really well for the past few weeks. My husband and I are just holding our breath scared that it's all going to fall apart any day now. Tantrums are down to only about two or three times a week, as opposed to about twice daily. She is much less oppositional. Last night she actually spent 30 minutes playing in the bonus room by herself. Before she would never go up into the bonus room alone. She is dressing herself, and bathing herself which is huge for her. Every few days I notice her doing something new that she hasn't done in a very long time. So I don't know exactly what has caused the change. I have heard really good things about Enhansa. About the anti-inflammatory effects and how it helps with yeast and break down of toxins. So, I guess it could be that. I did notice that she had bad days in the beginning on the days she got it, but that stopped after a few doses. I am giving that very slowly. Right now she only gets it every other day. Eventually we will work up to twice daily. They say in order to avoid those bad days you have to go slowly though. She is getting the methyl folate daily. She complained of headaches off and on for the first week, but never enough to slow her down. I know there are several of you all that deal with the MTHFR issue also. Do you think these supplements could be helping or just maybe coincidental? I have purchased the Niacin and B12 that is suggested for her type of mutation, but again introducting things very slowly so she has only gotten those once this week.

 

We are watching and hoping for more progress to come. She is scheduled to see the Immunologist at USF in June and have another week of CBT in June. Then the end of July we have an appointment with the LLMD. Should be interesting to see how things go as we increase and add the supplements and vitamins. Thank you all for your positive thoughts and prayers. Please keep my middle son in your prayers. He is doing some better, but still struggling with that nagging anxiety and some OCD. Going to start some Enhansa on him this week also. Keeping my fingers crossed......

 

Dedee

[dcmom]

Yay! Great news!!!

[LNN]

Great news! FWIW - we're addressing MTHFR/methylfolate/methylB12 with DD7 and things are improving. Not without bumps - have been working up very slowly and changing things one thing at a time, which is frustratingly slow. But this seems to be her lock and key. Not just MTHFR. I think there are other methylation hurdles to uncover as we go along. But the changes have been significant enough to make me optimistic. She is actually hungry these days - a huge change.

 

Please let me know how the Enhansa works for your son. If that doesn't do the trick, 500 mg/day of tryptophan has really helped my DD (another point in the methylation cycle). Fingers crossed for you!!