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

Dee, We have tried it 3 times and each time it made Sam's tics worse. We find that L-Carnitine works well though.

Faith, It does sound like it could be a problem with acid stomach to me, especially if he feels it more when his tummy is empty. I would try an antacid of some kind if I were you. Sue

We also do well with L-Carnitine for vocal tics. I agree with Cheri that the excitement of going away could have brought this on. The other possibility is spring allergies - have you been tested for these? Sue

We use the L-Carnitine - I buy the Twinlab 250 mg capsules and empty one into a little fruit juice. I give it to Sam as soon as he's woken up in the morning as I read that it's best on an empty stomach. He then waits to have breakfast for 20-30 mins after that, which is about how long it takes him to get up, washed, and dressed anyway! When I give him 2 doses, he normally has the second when he gets in from school, around 3.30pm. That's the only other time of day when his stomach is empty, as he tends to snack a lot after that! He generally falls asleep pretty quickly at night and stays that way till the morning Sue

It kind of depends for us on what's flaring up and why.. You really need to have an idea of what's making things worse. If Sam starts to develop vocal stuff, I make sure to never miss his L-Carnitine (250mg). I will up it to 500 mg a day if it doesn't help at 250. So far, it always reduces any vocal tics to minimal to zero. Taurine makes him worse - have tried it a couple of times now without success. The L-Carnitine normally takes effect within 1-2 days. I love that stuff!! When Sam is flaring because of his pollen allergies (the biggest cause of his flares) I use a variety of things - Moducare tablets, HMC Plus, and this year we're also trying Quercetin with Bromelain. I need to keep him on those all thru the spring/early summer to see benefits there. I have yet to get the hang of that and spring is always his worst time of year because of them. Using the glasses with Transitions lenses has helped with his worsening tics whenever he is in bright light. Hope this helps Sue

Just to clarify - the eye doctor didn't find anything unusual - I don't think they can see anything different when looking at the eye, but was able to prescribe glasses for him with the Transitions lenses, which are the ones that go dark when you go out in bright light. He wears them all the time when at school and most of the time at home too. We were lucky that a couple of the boys in his class had just got glasses so he didn't feel too different! We use the sunglasses instead when he's out in really sunny weather and the normal glasses don't cover his eyes well enough, such as when he's out doing sports in the spring/summer (we're in the Pacific Northwest so don't get a lot of sun the rest of the year!) I also have him wear a baseball cap whenever he can for extra shade. Sam is so used to wearing the glasses/sunglasses that I haven't considered him not wearing them at some time in the future. Guess that will be up to him when he's older and he'll be able to make his own mind up about whether they help or not. I know I have seen a big improvement in his behaviors when out in bright light since we got the glasses. Higher than normal levels of dopamine are thought to be one of the causes of tics - keep reading Sheila's book and previous posts on this forum (try to use the Search feature so you don't have to go thru everything!) and it will all begin to make more sense! Sue

Pippin What you're describing is the same as Sam used to do - he would look at the sun too as if he was drawn to it, and wave his fingers in front of it. It was almost like an autistic-type behavior to me. He doesn't seem to be affected by the flickering types of light either - we have CRT TV's in the house and they don't cause any obvious increase in tics. We have one LCD TV in our bedroom which we switched with the main one downstairs for a couple of weeks just in case we saw a difference in him but there was none. We took Sam to a pediatric eye doctor to get him checked out and she recommended the Transitions lenses. It's a good idea in any case to protect the eyes from the sun with a good pair or polarized sunglasses . It might be worth taking your son to get an eye test and discussing this with the doctor then. I remember reading something about how dopamine levels increase when bright light is received into the retina, so it kind of makes sense to me that being exposed to bright light can make tics worse. Sue

Just wanted to say that we also became aware that bright light made Sam tic more a year or so ago. We really noticed it when he played baseball last spring. We got him glasses with Transitions lenses in, which he wears every day, indoors and out. On really bright days if we go out, he wears some really cool wrap-around sunglasses,which he loves! It seems to have helped. Sam also does not have family history of tics, and we have found that his allergies, along with stress and excitement, and the light issues, are the main triggers for him. Sue

Sam's tics have begun to increase over the last couple of weeks. which we have been expecting. He's started to poke his tongue out and make faces at people, which is a little awkward! He tries to cover it up by acting goofy, but he's becoming irritable and short-tempered, I guess from the stress and strain of trying not to do it. He's 8 now and a lot more self-aware. This increase ties in exactly with the increase in pollen levels - the cedar counts (we are surrounded by cedar trees here) are at medium level and have been for the last 2 weeks. I have been telling everyone to expect this (he's done so well during this school year so far that I think people didn't really believe that anything was going on with him) but now that it's happening, I really need to find a way to calm things down a bit. He went through the same thing last spring but it didn't get too bad until March/April, but he's already getting close to that now and I'm concerned that he's going to be even worse than last spring... We use Moducare chewables twice a day at the moment to try to balance the immune system, but it doesn't seem to be having much effect. We tried sublingual drops over the last couple of years, but they didn't make any difference (actually, his allergies got worse over that period ) so we plan to start desensitizing shots this August, once most of the pollens have died down. Is there anything else that anyone's used that has helped with pollen allergies? He's allergic to every pollen that has been tested on him so far - trees, grasses, weeds. I have read a lot about Quercetin and nettle, but would like to get opinions from anyone else who is tackling pollen allergies before I try anything. Oh, we also use Xlear nasal spray too, although we haven't started that yet. Honestly, he hasn't been outside that much as it's been very cold lately, so I dread to think how much worse he might get. We have a HEPA air filter in his bedroom too. Does anyone have any suggestions? Thanks a lot Sue

Well, the tree had to go. Kept it until yesterday but Sam started to cough and sneeze and also looked pale, and dark under the eyes. It was an obvious allergic reaction. We put the tree out on the deck and it looks even more beautiful out there as we have snow today - about 6-8" so far here and it just looks gorgeous. We don't get snow too often so it all just looks magical to us! Sam is looking better already Guess we'll be heading out to the sales after Christmas to buy an artificial tree!

We've noticed Sam's head nodding tic re-emerging a few times over the last day or so and I think it's because of the live Christmas tree, which we got on Saturday. I had heard from a friend that her husband is allergic to real Christmas trees but I couldn't imagine why as there's no tree pollen around at this time of year. But it did get me thinking as Sam has often had an increase in tics over the Christmas holiday period, which then seems to continue thru to the end of spring. I googled allergic to Christmas trees and found lots of info on this and it seems that mold is the main problem with these trees. The spore count goes up massively after the first couple of days of having a real tree in your house. Plus, you spend more time at home over the holidays as school is out. I can totally see how this would cause an increase in tics with Sam, who has tons of environmental allergies. We are going to give it a couple of days and if he still does the head nodding the tree will be heading out the door! Sad - his big brother was only saying yesterday that it's the most perfect tree we've ever had Just putting this out there in case anyone else notices a worsening at this time and isn't sure why, or maybe someone else has already identified this as a problem? Sue