samsmom

No - we used a kit from Diagnos-Techs that we got through our pediatrician. You have to send poop and spit

Just found out we have yeast issues to deal with (again) for DS11. Tics and silly behaviors have increased so I guessed that was the problem and tests have confirmed it. We currently see Dr Keller in Redmond but I feel like it would be good to get on board with an additional doctor who has more in-depth knowledge on yeast and digesive health. Am thinking that a DAN doctor would be good. Does anyone in the Redmond area have a recommendation? Thanks!

Thank you to those of you who replied. Just wanted to update that DH and I took Sam to the doctor this morning and found that we are both positive for strep, although he is not. We have never knowingly had strep before and don't feel like we have it so we were blown away. The doctor believes that we are carriers. Hopefully, with all 3 of us on abx, Sam's panic attacks will stop. If they do, I will become a firm believer in PANDAS. Until now, I have never seen a clear enough connection. Thanks again for your input.

Has anyone else here started B12 shots and seen a worsening of behaviors, esp. anxiety? We started our son on B12 shots 3 times a week after finding that he had a gene defect (MTHFR - I understood it at the time but can't explain what it is to anyone now..) He's been on the shots for 3 weeks now and his anxiety is getting worse and worse. He's had 2 panic attacks in the last 3 days. He started to have more anxiety over the summer so I can't put it all down to the B12 but I'm wondering if the B12 is making things worse by beginning to get toxins moving or something? Any ideas from anyone? Thanks.

This sounds like an interesting test. Never heard of it before. Do you have to request it thru a doctor? Thanks.

I would definitely check him for pollen allergies if you haven't already. Sam's vocals only tend to show up at this time of year when the cedar pollen starts to come out. The puffy eyes and mood change also might indicate that. We give him a Claritin Reditab every day and I also use a nasal gel to try to keep the pollen away.

Cheri, I'm so sorry about your husband. I hope everything works out OK. Sue

I just wanted to agree 100% with what Kim and Faith have said. Without this forum, I would have felt completely lost and hopeless. Traditional doctors, no matter what their specialty, just don't know enough about these disorders. We saw an expert in TS when our son's tics first started (4.5 years ago). He never questioned why his tics had started, never talked to us about possible prior illnesses, never wondered about the lack of family history of neurological issues, just said that it was one of those things and he wasn't bad enough for medication (not that we wanted it anyway). The contributors to this forum, and especially Cheri, became our only guides through this whole thing. Every time I talk to anyone about TS, I always find myself quoting someone from this forum because it's been our only source of information. Having said that, all of the latest articles and new information about PANDAS and immune issues with TS/OCD etc. kids have me very excited for all of us. We have always felt that our son's issues stemmed from problems with his immune system. We have focused for the last 2-3 years on making his life as clean as possible - we have worked on what he eats based on IgA and IgG tests, and of course removal of everything artificial; and used herbs, and then this year, allergy meds for his pollen allergies. We also started him on allergy shots this year. We found thru various tests that he has basically no SIgA in his gut, also, thru a research study that we joined when he was born, that he has some positive antibodies related to Type 1 diabetes, which means he's at higher risk of developing this. We also have no family history of TS or similar disorders. It now seems possible that Sam could be a PANDAS case. By chance, I asked our enviro doctor at our last visit if he knew much about PANDAS as I had been hearing more about it. I never felt Sam was a PANDAS case as he didn't have the typical extreme onset of OCD, which was all I ever read about. He gave us the name of a pediatrician just 5 miles from our home who he had recently heard was taking a keen interest in PANDAS. By chance, a couple of weeks before our scheduled appt. with her, Sam mentioned that his throat was a little sore. He never complains about a sore throat, never has them, so I grabbed the chance to run him down to the doctor and got him checked for strep. Immediate swab was negative and the ped's office called me a couple of days later to say the ASO and DNase B were normal. Having read more on these forums by then, though, I asked for the numbers. It turns out that the ASO level is high, according to our new 'PANDAS doctor' (don't know what else to call her!) So, by chance, we seem to have now found a new avenue to check out. I don't know if it will lead to anything, but I'm anxious to find out either way. As I prepared his history for the doctor, I discovered that he had had a really bad stomach flu type illness a couple of weeks before his first tic appeared. He had then had a chickenpox shot a couple of weeks later. I took him to the doctor a couple of weeks after that with both vocal and motor tics. Looking back now, I remember the separation anxiety, nightmares and anger. I never knew about PANDAS at the beginning. Whether this is a way forward for us or not, we would never have been able to find this path without all of you who are so ready to share information and stories so that the rest of us can learn. I am so grateful to all of you. Samsmom

Bonnie Just wanted to say that we have had success lately with GABA for anxiety. Sam developed fears of a few different things and they were really becoming a problem for him. The GABA has really helped since we started using it a couple of weeks ago. If you haven't already tried it, it may be worth it? Sue

Just wanted to say that our son who is 8 now did this a lot over the last couple of years - he would look up at the sun or a bright light and wave his fingers in front of it. We had him checked out with an eye doctor and there was nothing wrong, but we decided to get him glasses with the Transitions lenses which darken in bright light. We got them last year and don't see him making those movements any more.

We have found Claritin to be the only thing that has really helped him with his pollen allergies. I wrote more about it in the thread titled ALLERGIES. Natural treatments we tried included using sublingual desensitizing drops for a couple of years, also Quercetin, Moducare, HMC+ and various nasal sprays. None had any noticeable impact. We didn't try NAET - we had a couple of visits about that but I never could get my head around that process...

If you have any suspicions about pollen allergies I would definitely recommend getting the traditional skin prick tests done. We had Sam tested when he was 5 even though he had no classic allergy symptoms at all. We did this because of what I had read about allergies being a trigger for tics and also because his Dad and brother have many allergies. We were amazed to find that he had allergies to almost every grass and tree that we tried. We wouldn't have known otherwise. He only started to show typical allergy symptoms last spring, when he was 7. It's definitely worth getting the test done. Sue

Pollen allergies are the biggest issue for Sam in terms of aggravating his tics. He is always a lot worse from February till summer. We warned his teacher at the start of 2nd grade that this would be the case, but it hasn't happened this year. We started giving him Claritin RediTabs in March after trying other natural remedies and also trying to desensitize him with sublingual drops in previous years. None of it helped. This is the first spring where we haven't had to worry about his tics being disruptive - I think his teacher thinks we were exaggerating! He still has some tics - never has had a day without any since they first started - but they are so much less noticeable, despite the very high pollen counts early this year. I know these allergy meds don't work for everyone, but we seem to have found the right one for him. He just takes one each morning and I can see that it seems to wear off a bit at the end of the day. We tried him on Zyrtec before that but didn't see any improvement. He took it at night because of the dizziness and drowsiness that it can cause and I think it had just worn off too much by the next day. His allergies are pretty severe - the weals when they do the skin prick tests are almost off the scale - so I'm hoping to get him started on the desensitizing shots at the end of this summer. Hope this helps Sue

Bonnie Did you get my PM about the quercetin? I tried to send it twice and both times it didn't look like it had gone. Sue