TinyTreasures Posted September 7, 2013 Report Share Posted September 7, 2013 Thanks so much for all that information! I am learning so much through you all! I think that is a good idea - I am stopping the Molybdenum until my son is more back to himself, then I think I will try it again and see if it has the same effect. I know he was already in the middle of a flare when I gave it, just not as bad as the days he was on it but that could have been completely coincidental since he improved at the same time I stopped the Moly and started antibiotics. I just ordered a urine test for Kryptopyrrole. Someone on this board mentioned it months ago and I was going to get it but forgot, but I was talking to my mom yesterday and she said my nephew has Pyrrole disorder. The symptoms sound so much like my son's PANS in a lot of ways. I am also thinking about signing my son up for Mensah Medical - this would be a big expense but he is so young - not even 4 years old - and I feel like I need a Dr. who is much more knowledgeable than me to tell me what is safe for him and exactly what he needs. My nephew is their patient and he is doing so much better on their vitamin regimen...a year ago he was put into a mental institution and now he is doing great! But we have a couple things coming up first - our results for the Cunningham Panel should be back hopefully next week, and then bloodwork on September 15th to check for infections. So sick of Dr. appointments and feeding therapies and staying up till 2am researching these things...I want to go back to our calendar 2 years ago that was filled with playdates, park, library, and fun outings =( Link to comment Share on other sites More sharing options...
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
Already have an account? Sign in here.Sign In Now