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Hi Everyone, I just wanted to post because it might be helpful to someone. For years, I avoided listening to the "Go Gluten Free/Caesin Free" folks. We attempted years ago but found it too difficult and I didn't fully appreciate that it would help. Every time I read a post about it - I clicked past. As luck would have it, our test for tissue transglutaminase IgA was significantly elevated. So we were in essence forced to eliminate gluten. Just for kicks I eliminated dairy too. It took some time to convince preteen DS to do this. But once he did these things went away: dramatic mood swings, OCD and anxiety (was severe with infection, but lingered occasionally without infection), dark and red circles around the eyes, facial flushing, complaints of joint pain and fatigue, complaints of mental fogginess. He still has some issues with periodic bursts of hyperactivity/compulsive talking/impulsivity. We continue on Zithromax once a day. I know we struggle with candida and seasonal allergies and we work on that. But he feels so much better. Here is the kicker. He went away for 2 days without me and was not strict about the diet. When he returned, he was a complete and utter emotional WRECK! Diet is a definite layer!

deleting post: found solutions

THE PEACE OF WILD THINGS When despair for the world grows in me and I wake in the night at the least sound in fear of what my life and my children's lives may be, I go and lie down where the wood drake rests in his beauty on the water, and the great heron feeds. I come into the peace of wild things who do not tax their lives with forethought of grief. I come into the presence of still water. And I feel above me the day-blind stars waiting with their light. For a time I rest in the grace of the world, and am free. — Wendell Berry

Ultimately it's trial and error. We tried Zoloft when DS was 8. This was before we knew about PANDAS/PANS. It sent him into full blown ADHD type behavior. He was racing around the classroom. We then were on Zithromax for a good year. First daily and then 2X a week. When we tried to withdrawl, we'd see a backslide too. Eventually we had him off antbx for a good 18 months. But then DS12 got sick again severely. Our trigger was strep when younger, but now can be anything. Our biggest challenge is a continuing problem with sinus infections. We also recently learned that he has a high probability for Celiac. During these last flares, we tried a smattering of Prozac. It caused a type of rage I had never seen before. I am not against SSRIs at all, in fact I really wish they worked. Lately I'm wondering if my DS has a neuro chemical response similar to that seen in bipolar as SSRI can trigger mania. So we will stay away from that class of drugs. But that is our specific case.

In very simplistic terms, and very generally speaking, dopamine is lower in kids with ADHD and higher in kids with anxiety/OCD/PANS. But the behaviors look the same. Hyperactivity, attention issues.

Quannie, So many people have said to me, and I believe it to be true... It doesn't matter what we call it. We just need to find a way to help them. So peel the layers and see if there are some other treatment options that may help. We've thought for a long time now that ANY form of "mental" disorder has roots of biological predispostion. Combine that predispostion with any type of environmental trigger and boom.

I just want to say that I so appreciate this forum and all the incredible insight and support that comes with it. Sometimes when I start to lose my own mind, either from manic googling, or insurmountable despair, this forum brings me back to grounded strength and perseverance. Sometimes, when I am paralyzed to act from fear of shut doors or a resurgence of disaster, this forum gives me the courage and the resolve to move forward. We are each different, with varied stories, but we are all riding the same merry go round. Am hopeful that our collective resolve will allow us to embrace this circular journey. And then... And then in my mind I imagine again and again, this vivid scene from Mary Poppins. When the Merry Go Round breaks free from its beams and each of us ride off into the incredibly vivid and bright world. I don't believe in finish lines, but I do believe in happiness.

Thanks everyone! Appreciate all your help!

Quannie, we tried turmeric during a flare and thought DS went from bad to worse. But we had other things on board at that time as well so it could have been anything. You know sometimes when you are in a flare, you just shot gun out of desperation and then you don't know what is what! Anyway, I am wanting to try this again but am hesitant since we are functional (though still with residual issues). In your research, did you find any issues of concern or risk with turmeric?

For those of you using Quercitin, did your child have paradoxical reactions to OTC antihistamines? Benadryl, claritin, zyrtec all make DS hyper. Wondering if Quercitin would act differently.

Thanks sss. Yeast is a definite possibility too. Hyper, silly as well which contributes to the lack of impulse problem... Will tackle that too.

Appreciate your responses. Yes, the behavioral problem is a big one and of course its part of our overall problem anyway. We are working with teachers, therapists, and doctors. Yes, he wants to get better but he has zero impulse control. Zero. And because he didn't have any glaring physical gut issues prior (i.e stomach pain, bloating, diarrhea) it's hard for him to make the connections -- despite 10000 times explaining things and showing pictures, offering incentives et cetera. Bottom line is that he wants to do well but cannot control the impulse. Certainly not professing to be "gluten free" when I know he cheats. I understand your point and know that even the tiniest amount can impact his gut health. But my point was that we DID drastically change his diet for 95 percent of the day. It's still a change. I'm asking if the change alone can CAUSE symptoms when none existed before. Does that make sense? I guess I worded it wrong in my original post.

DS13 had a lab test showing high probability for Celiac. We did not pursue definitive biopsy to diagnose. He NEVER complained of any belly pain or bloating-- (but of course other symptoms existed like PANDAS/PANS symptoms -- other auto immune issues -- joint pain -- low D, low Ca, low Ferritin) We are 10 days gluten and dairy free. He cheats at school. Not every day, but often. Last couple of days he's been very bloated and uncomfortable. Of course he also has a cold and allergies are in play. And he's on Azith and Augmentin so his gut in general I suspect is a mess. Have any of your children experienced belly pain and bloating AFTER going gluten free? I think maybe removing the gluten made him more sensitive to when he ingests his small cheats? Of course we'll try to convince him not to cheat. But just curious -- did this "side effect" happen to any of you after changing diet? And yes, this bloating could be ANYTHING... just chasing down leads.

Am interested to know about antibiotics and anti-inflammatory agents and Bradstreet's opinion on how they ruin the gut. Not sure if you already posted this opinion. While antibiotics and motrin help my DS, I am quite sure we have very much damaged his gut which only further complicates and elongates the issues. I feel as if we are caught in a vicious circle and have no idea how to get out!

Does anyone know the mechanism by which a child is paradoxical in their response to antihistamine? Benadryl, Claritin, Zyrtec... all seem to cause hyperactivity (ironically, i think the allergies themselves also cause hyperactivity). But it's a definite up tick with the anti-histamine on board. We knew about this reaction before... but gave Claritin another shot... but no go... he's through the roof hyoer. Will try H2 blocker. But what causes this unusual reaction?

Prior to this year, March and April were always our worst.

P-Mom, what treatments did you use?

Thanks. Good thoughts. Will read up about Phenol and salicylates! Can't believe I've waited so long to address all these things.... Dressing was balsamic? read prior it was okay but... No tomatoes. Maybe the sweet potato though or some other veggie... Seems okay with egg and chicken at least in past. Time to seriously chart! Will read!

We used to use Pepcid too by the way. DS could not tolerate the H1 meds. But for whatever reason, he is okay with Claritin now. Maybe i'll add the H2.

Hmmm. Yes, DS does absolutely have other flushing when in a flare particularly. And noticed previously that flushing seemed to precede the onset of the OCD/behavioral flares. Facial being most dramatic but all over body absolutely present. This, along with the urinary accidents and sometimes a stronger body odor (I should say stronger than usual-- he's 13!) will help me predict the rest of the sequence. And the flushing will be more pronounced the entire flare. The red ears are different. Seem to happen independent of the above and more so after eating. Had thought it was something he was eating. But after removing what I thought was "everything," it still happened. And he does not have the other redness. Of course, watch-- tomorrow- everything else will start. Ugh!

Just wanted to say that I empathize with you. Have found it very difficult to walk this line.

This seems silly to ask but it really is driving me nuts. DS13 has always been what I thought was an allergy kid, but he always tested negative. Fast forward to age 12 and he finally tests positive for strong allergy to dustmites AND his tissue transglutaminase IgA was quite high (92.4 percent specific marker for Celiac). So we are gluten free and dairy free, though my impulsive/compulsive child still "cheats" at school. It's been about 10 days since we started trying this approach. Have talked before about severe facial flushing... am sure it must be allergic responses... but it has been somewhat better. He also started 1/2 Claritin. Tonight, he had baked sweet potato, baked chicken and salad. All gluten free, all dairy free -- homeade dressing et cetera. Water to drink. No meds. Within about 20 minutes, he had bright red ears. And some hyperactivity. It's not temperature related -- he's eaten similar hot foods and not had the reaction. He's also not anxious. What am i missing?

We have used it as well. During a big time flare it doesn't seem to help but with little popcorn flares it seems to help. You do not need much. DS13 is 105 pounds and only takes 0.5mg. I have read warnings regarding side effects related to long term use, growth stunting and problems with puberty however I can't seem to locate any actual studies.

But of course, as you've read, it doesn't help everyone. Very unfortunately, I've tried several times with several different ratios. DS13 always responds with increased touching compulsions ;-(

Absolutely!