on the right track?

[eljay1]

Where do I begin? First, let me say "thanks" for all of the posts that I have been following for almost a year. This forum has helped me navigate through a lot of weird stuff, and has kept me sane on some of my darkest days. I began by following the TS forum for quite some time, and I realized along the way that alot of my son's symptoms seem to follow the PANDAS track. Here is our story-I'll try to shorten it a bit!!

 

My son is 5 1/2 and always had some quirks, but medically, has been pretty healthy. He was born allergic to dairy and we found it early on. I have always thought he was overly sensitive to a lot of things (loud noises, toilets flushing, big crowds, etc.). At about 4, he began to really blossom and become really socially active and seemed to outgrow some of the "quirks". In the spring of that year, he got his first ear infection--it was really bad and took several doses of antibiotics to clear. He did ok for a couple of months, and during the summer began to have a strange "breathing reaction" when we were at the pool. I took him to an allergist and she eventually put him on 3 different meds for what she thought was allergies/asthma. In the fall, he got another really bad ear infection. A few weeks after the infection supposedly cleared, he got a regular flu vaccine. Several weeks later he received the H1N1 vaccine. (I am cringing right now as I write this...)In Dec., he seemed in a fog and was quite irritable. We thought it was the allergy meds and began to wean him off. As soon as he was off the medications, there was an explosion of tics and OCD behaviors.

 

Over the last 10 months, we have been to a DAN doc mostly, and many other specialists. My son has had ups and downs all along the way, but the tics and OCD have remained pretty constant. (The behaviors change--and many seem to follow a pattern. Also, the tics change too.) The biggest problem has been with food. He's always been allergic to dairy, so we didn't have to cut that. We had him Ig(g) tested, and removed the 20 some foods that showed up. But over the last 10 months, he has become reactive to almost every food out there. I mean EVERYTHING. Fruits, veggies, all grains--we've been gluten free, but he can't tolerate rice, corn, or any of the other legal grains. His reactions are largely nasal congestion, and behavioral. We have tried to be really careful with the congestion, because we fear the whole ear infection thing. Any way, I could go on, but my main issue is that his DAN doesn't believe in PANDAS, and the neurologist doesn't think he has it because his tics and OCD have never gone away. From everything I have read, I think he could still have it. He was tested for strep (swabbed and a blood test) early on, because one of the allergists had heard of PANDAS and thought he might have it. It came back negative. We are scheduled to see a GI next, and we are switching to a DAN that has experience with PANDAS. Any other thoughts/advice on what we should do? He is on the full range of supplements, and has been treated for yeast several times--we are now on GSE for it. He's on probiotics and enzymes, and I have begun to use the querecetin to lower his histamine levels. I am hoping and praying to get some answers soon...Thanks for listening!!

[butterflymom]

=

Edited October 5, 2015 by tampicc

[eljay1]

Hello, my son is also 5 1/2, and has a similar story to yours of recurrent infections (sinuses/allergy/diarrhea), with behavior problems and tics coming on in the last year. We also tried some DAN approaches (GFCF diet and a variety of supplements)the last 6 mos, even though he does not have autism, or any other diagnosis until PANDAS diagnosis in Sept. He was recently Igg tested and came up allergic to many of the foods he eats often (including rice!), and I was told he has yeast. However, I would like you to know that since we started PANDAS treatment 6 weeks ago, he has never been better! His treatment has included two different courses of antibiotics (cefdinir, and now augmentin), and a 5-day steroid burst. All his tics are gone, rages and behavior problems gone, and he's doing great right now. Although I respect the DAN approaches for autism, and I know many families for whom these methods work well, I have discovered that PANDAS is what my son needs to be treated for. At this time, we are not convinced that the Igg food testing and yeast issue have any impact for our son, and we are slowly abandoning the diet. We've added dairy back in for two weeks with no problems, and will try adding gluten over the holidays. Does your child have an autism diagnosis? I want to encourage you to not be afraid of considering PANDAS treatments, as they help many children on this forum. You can seek out a doctor who believes in and treats PANDAS by asking for a list of docs from the Pandas Network website. Please let us know how it goes, and good luck to you!

I am definately trying to pursue the Pandas route. I haven't been able to find a doctor yet, but I went to the website and requested a list. I was just wondering if your doc found strep as the culprit to the sinus infections? Did you have all of the standard labs done through that doctor or did you bring info with you from previous testing? I chose the new DAN doc because he is the only one who seems to have some Pandas experience. I need help!! Edited November 3, 2010 by eljay1

[butterflymom]

=

Edited October 5, 2015 by tampicc