food allergies/celiac ds

[BikeWP]

Question for all you PANDAS Moms/Dads-

My ds was diagnosed with PANDAS in Late November and with all the blood tests he had...as you all may know...his food allergies were extensive! We recently found out that on top of all the PANDA issues, he also has Celiac. The nutritionist says that she wants him on a "clean diet" for one month meaning NO foods he had a reaction to (which is 25 out of 90!!!). We are almost at the 30 day mark (yay!!! and wooohooo!!). Has anyone of had to deal with doing this? The nutritionist wants us to come back in to discuss how to reintroduce the foods he had to stay away from. Do I really need to go back in to discuss?? I feel like I am just handing so much $$$ over to the office these days and my insurance does NOT cover this at all. It's $95 every visit! YIKES

I also feel like the blood tests for the food allergies came back crazy high due to his gut being irritated from the gluten. Could this be??

Another question I have is does PANDAS go away? It seems as though IVIG is the route most take. My ds has been on abx since the beginning of Dec along with the steroid (once) burst. The abx helps his tics somewhat but not all of them. I do feel like he is better on abx but he still has the OCD, anxiety and tics. His symptoms are not as extreme as most...soooo will the abx eventually help and go away??? Did we catch it early enough? DS has had symptoms since he was 7 and is now 11. The earlier you catch PANS the better???

Sorry for the rambling on....any advice and knowledge would be so helpful. THANK YOU SO SO MUCH.

[mar]

Question for all you PANDAS Moms/Dads-

My ds was diagnosed with PANDAS in Late November and with all the blood tests he had...as you all may know...his food allergies were extensive! We recently found out that on top of all the PANDA issues, he also has Celiac. The nutritionist says that she wants him on a "clean diet" for one month meaning NO foods he had a reaction to (which is 25 out of 90!!!). We are almost at the 30 day mark (yay!!! and wooohooo!!). Has anyone of had to deal with doing this? The nutritionist wants us to come back in to discuss how to reintroduce the foods he had to stay away from. Do I really need to go back in to discuss?? I feel like I am just handing so much $$$ over to the office these days and my insurance does NOT cover this at all. It's $95 every visit! YIKES

I also feel like the blood tests for the food allergies came back crazy high due to his gut being irritated from the gluten. Could this be??

Another question I have is does PANDAS go away? It seems as though IVIG is the route most take. My ds has been on abx since the beginning of Dec along with the steroid (once) burst. The abx helps his tics somewhat but not all of them. I do feel like he is better on abx but he still has the OCD, anxiety and tics. His symptoms are not as extreme as most...soooo will the abx eventually help and go away??? Did we catch it early enough? DS has had symptoms since he was 7 and is now 11. The earlier you catch PANS the better???

Sorry for the rambling on....any advice and knowledge would be so helpful. THANK YOU SO SO MUCH.

[mar]

Yes my son also reacted to 28 foods out of 88. He was 7 and yes he was ticcing but at that time the main concern was his congestion , bags under eyes pale and tired and ticcing and basically was always sick with sinus infections. We gradually took him off of everything. I also went to an allegest and tested tk see IOC any of the foods are certain allergies and not just sensitivities. He also has all out door allergies. He was off of this food for a long time maybe a year and is still off of probably half of it today at 10. I never went back to the naturopath bc it was too expensive. I would introduce an item in minimal servings and would watch how he would react. The ones k reintroduced were sensitivitys and not really the ones I new he was actually allergic to. His congestion is way better!!! He does not take any allergy meds which is amazing since he has all outdoor allergies. Limit one item per week and just watch what happens. He is allergic to milk but can now tolerate cheese occasionally without getting congested he couldn't do this before. He was doing so well. He is now ticcing a lot and the last couple of weeks has been cheating a lot so don't know if that's the cause or what. Overall I think the diet helped bc don't even want to know what he would be like without it. We also limit dyes and preservatives. Good luck and j hope you notice a difference.

Mar