britmom

My bad. Would've realized that if I'd read all the posts on this thread

Buster Answered the survey but it isn't showing up on the map. Zip code is 98074 (nr Seattle, WA)

Fantastic!! Can't quite believe it! THANK YOU for organizing us all and making this happen!!

Hi dut How do you get digestive enzymes checked? Is there a specific test? We've been giving our son digestive enzymes off and on for a couple of years now, just to give his gut as much of a helping hand as possible. Would be interesting to see some sort of count though..

Our DS9's main presentation is tics - he was on a 5 day steroid burst (60 mg prednisone a day for 5 days) and was a completely different child on day 6. Totally calm, focused and still. The tics began to return in a small way after a couple of days, and now they are still around, although they are 'smaller' than they used to be (mostly facial). The spring is always the worst time for him because of his allergies so his level of tics right now is good compared to previous years. The other issue for him, which is mild anxiety, went away too and is still not back, 4 months later. We did a second burst a couple of months after the first and did not see the same results with the tics.

Hi Dut Just wanted to say that DS9 also has very low SIgA - we first got a count about 3 years ago, when it was 13, which horrified me! When we rechecked it about a year ago it was 9! As you say, it should be at least 400. These tests were all done before we started seeing Dr Keller - they were done thru our environmental doc at the time. Dr Keller said a low SIgA seems quite common among her PANDAS kids. Our enviro doc said people with such low counts would normally pick up a lot of infections but our son doesn't. He said other parts of the immune system are clearly compensating for it. He said there really isn't a way to increase the count - some people just have a low number. Sue

Our DS9's behavior also got worse whilst on the 5 days of steroids (60 mg/day) - I almost stopped giving him them, tics were bigger, he was very aggressive. But he improved dramatically at the end of day 6 and held that improvement for 4-5 days, then slowly worsened. The anxiety that he had was really improved and is only just creeping back in now, a couple of months later.

I was also interested to see replies to this. I guess that no replies means that no-one has regrets - which is great news!

Thanks for the replies - it's great to hear other people's opinions on this. Our DS9 is a zebra! Just found out in the last few months that he has PANDAS after believing he had TS for 5 years. He is not a sudden-onset case. He does not have a lot of highs and lows - just slightly better and slightly worse times of year, but never a really good day at any time. The only obvious factors that make things worse for him are his environmental allergies and stress/tiredness. So we do kind of have the luxury of planning a good time for IVIG. I wish someone could say for sure if it's better to do it when there are fewer of that particular child's 'offenders' around though. I still don't get the science behind all this... but it seems to me that it would be better to do IVIG when the body is not already in turmoil from allergies that are seasonal. I really wish someone could give a definitive answer to this..

We are beginning to think seriously about IVIG for DS9. But I'm wondering if now is the best time to do it. He has severe pollen allergies (trees and grasses) which always make him worse, normally from around February to August. Would it make sense to leave IVIG until the pollens are gone or do you think it makes no difference? Just wondering if doing IVIG during high pollen season would put extra burden on his body that would somehow make the IVIG less successful???

Thanks to everyone who got back to me on this. Honestly, we were rushing thru this 2nd burst to get to IVIG as it looks as though our health insurance will lose its contract with the hospital that does the IVIG here in mid-April. That means we will have to pay but I think we need to give this more time. We had DS9's IgG subclasses 1-4 checked recently - he was normal on all, although subclass 4 came in at 4 and the range is 1 to 95. We do know that he has almost no secretory IgA in his gut. Is this a red flag for IVIG?

I would really appreciate any advice on this. We completed a 2nd steroid burst for our DS9 last week. We did the first burst (prednisone, 30 mg twice a day for 5 days) in January, and saw big improvements that started the day after the burst finished. His anxiety about being upstairs alone went away completely and is only now beginning to resurface very slightly. His mood, and also tics, were really reduced for a period of maybe a month. This was good as he has huge pollen allergies and this is normally the toughest time of year for him. But we have seen absolutely no change after this second burst. We did the first burst as a diagnostic test, to show that his problem was indeed inflammation (he's been diagnosed with standard TS for the last 5 years). We did the second one to confirm that the results from the first weren't just some kind of coincidence - my husband's a scientist and he needed to see that the experiment was repeatable We were seriously considering moving on to IVIG (we've done a month of high dose Augmentin and are now on proph Azith) but now I'm wondering why the steroids haven't changed anything this time. Can anyone explain why this might have happened? It's really made us wonder if IVIG is the right thing to do - it seems like a tough procedure for kids to go through when you have no evidence that it will help.. Can anyone offer any insight here?

Our DS9 has been testing positive for the GAD antibodies for several years now. It is one of three that are being checked on a regular basis as part of a type 1 diabetes study that we joined when he was born. Being positive for GAD can mean that they are at higher risk of developing type 1 diabetes.

Allergies are DS9's biggest problem. I used the Little Allergies gel on him for the first time last spring/summer and I feel like it helped. I like it because it's so easy just to rub it around the nose before he goes outside. You're supposed to reapply it every 4-6 hours. He has really strong allergies to practically every pollen he's been tested for. What I'd really like to do is put a mask on him when he goes out, but I know he won't do it!! This gel feels kind of like a 'virtual' mask!! He also has a Claritin Reditab each morning. I tried Zyrtec with him at night - his older brother takes it successfully for his allergies - but it didn't help DS9 at all. I just started using the gel again this year. He's been taking the Claritin since January - we're on the West coast and the pollen count started rising very early this year as we've had such mild weather.

Watching it now on the West coast. Horrifying. I hope someone at one of those hospitals has checked those poor kids out for a PANDAS/PITAND type illness. They all look so tortured..

Our ped mentioned to me yesterday that DS9 should take DHEA with steroids on his next steroid burst. He had good results from the burst but was hard to live with while he was taking the steroids. Very aggressive and bad-tempered. She told us this should help with that side effect and we should give him DHEA just for the 5 days that he takes the steroids. I haven't researched it myself at all.

Kevin Just saw that you'd asked a question of me. We normally keep DS on the L-Carnitine for maybe a couple of weeks, and at most a month. Have only had to use it 4, maybe 5 times in the last 4 years. It's worked for us every time.

Just wanted to add that we have also had success with L-Carnitine for our son's vocal tics. We use Twinlabs L-Carnitine and give him one 250mg capsule a day whenever a vocal starts to appear. It has always worked for us within 2 or 3 days. Our son is now 75 lbs but we have been using this dose for a couple of years. I tend to keep him on it for a few days after the tic has gone. We've probably used it on 3 or 4 occasions in the last 3 or 4 years and it's worked every time.

Santi I understand your confusion. I would like to briefly tell our story. Our DS9 developed tics when he was 4 years old. The first tic came (stamping his foot on the ground), and a week or so later it was joined by another, then a week or so after that, a vocal tic. I would call these tics rather than OCD behaviors. The TS expert that we saw at Childrens Hospital called them tics. In the weeks following that, he developed some separation anxiety (more than usual), and started to show some sensory issues. He became easily frustrated and aggressive. He was diagnosed with TS. We have no family history of this kind of disorder or anything similar. I became aware of PANDAS a few months after this, but dismissed it as a possibility because he had not shown sudden, overnight onset of OCD type behaviors. He had also never had strep throat. For 4 years we lived with the diagnosis of TS and believed that all we could do was reduce as much as possible the triggers that we had come to know. Whilst he would be better at some times than others, he was never as good as before his tics started - only varying degrees of OK to bad. The funny (?) thing about this is that I got talking with the mom of a student at my son's school who has PANDAS (this student is more the classic case of sudden onset) about 1-2 years after my son's tics had started and we chatted often about PANDAS. I never once believed that it applied to my son, because I always thought of sudden onset OCD. It took almost 3 weeks for that student to improve on abx. Only 4 months ago, I saw something on the TS forum and it referenced PANDAS and Tourette Syndrome in the same sentence. I happened to ask our enviro doctor about it and he happened to know of a ped in our city who had an interest in PANDAS. It now appears that our son is a PANDAS case. I am still struggling to believe it. He improved after a month on high dose Augmentin, and he also changed significantly for the better after a steroid burst. He has a streptozyme level of 200 (should be 100 or below). His CAM Kinase was 130 (blood drawn after 17 days on Augmentin). He is currently on Azith twice a week. Based on our case, I feel strongly that no-one should be discouraged from looking into PANDAS because the onset of symptoms was not 'sudden'. Sue

Our DS9 was on prednisone for 5 days recently - 30 mg in the morning and 30 mg at night. No tapering. He was really bad when he was on them - more tics, very aggressive (verbally, not physically), very emotional. I could hardly bring myself to give them to him by the 4th day but we somehow finished the course. It was so worth it! The day after he stopped taking them, he was a different child - really calm and focused. That was the best day. He is slowly returning to how he was before although his tics are still a little better than they were. His focus and emotional lability have pretty much returned to how they were before though. It's been 3 weeks since he finished the prednisone. My impression from this forum is that kids do vary in the level of their response to steroids. I'd say overall we had a full week of really noticeably improved behaviors and then gradual deterioration. We're going to repeat the use of steroids again when we feel that we need them, and if we see the same kind of response we will start to consider IVIG, which our ped has recommended.

We used GABA about 4 months ago - got it from a compounding pharmacy thru our enviro doctor. I had wanted something to calm DS - he started 3rd grade in a class with none of his good friends and was stressed, and ticced more as a result. I found it did relax him a bit. He sleeps really well so no change with that. Didn't know he had PANDAS at the time and had no idea you could test out the BBB permeability with it. Now that we're done with steroids, I was planning to get him back on it anyway, so will watch more closely this time and see if it helps again.

Justine Sounds like you have more pointing towards PANDAS than we did. You definitely need to try out abx, and steroids too, before you write off PANDAS. There is just no 'one size fits all' here.

Justine Don't get too caught up in working out how/when the first strep event was for your son. My son started to have tics at 4 years old (he's now 9). He was diagnosed with TS. We have no family history of TS, RF or any of those other disorders. I knew about PANDAS back then, but he was nothing like the profile of a PANDAS kid at that time. I even have a friend whose daughter has PANDAS, but never felt it applied to my son. He's never had OCD type behavior in my opinion. Just motor and sometimes vocal tics, and 'difficult' behavior - short-tempered, easily frustrated, but not really extreme - he's doing well in school and most kids accept his tics. Like your son, his tics always die down a lot when he does get sick. Anyway, I happened to ask his enviro doctor about PANDAS a few months ago because I was hearing more about it. I wanted to officially rule it out for my son (I'm a 'check the boxes' kind of person). He happened to have the name of a pediatrician locally who's interested in PANDAS and we scheduled a visit to her. It was a one-off visit, because her practice was full and I just planned to have her rule it out.. I have been totally amazed to find that he does appear to be a PANDAS case. This boy has never had a sore throat his whole life. He has been on antibiotics just once when he was 1 or 2. He has just had the normal occasional bouts of stomach flu or colds/coughs but is generally very healthy. By sheer coincidence, the week before we saw the PANDAS doctor, he said he had a sore throat!!! Because of what I'd seen on this forum, I got his throat swabbed that day and made sure I got the numbers back from the cultures. His ASO was 260 which is slightly elevated. although our regular ped said this was normal and not indicative of PANDAS. Further blood tests showed that he had high streptozyme. Our new PANDAS doctor put him on a month of Augmentin and his tics were better than they had been for a few months. We tried steroids a couple of weeks ago, and after 5 days of roid rage he was fantastic for 3-4 days - calm, focused, pleasant to be around. That has really proved it for me. I would never have believed it if you'd told me all this 3 months ago. Keep investigating and getting the tests done. I am so happy that we looked into this and have been able to get to this point with him, and I urge you to keep looking into this even if you don't think the PANDAS profile quite fits your son. I think the range of kids that prove to have this disorder is going to be growing rapidly as more is learned about it. Good luck!

I am new to the PANDAS forum, having been on the Tourettes one until now. I won't give the full (long) story, but just say that DS9's symptoms started when he was 4 and we have always considered him to have TS (no family history of this). I took him for PANDAS testing to rule him out. To me, he didn't fit the profile that I'd heard of for PANDAS. Instead, he appeared to get ruled in!! To my knowledge he had never had strep. The week before we were to see a new doctor about PANDAS, DS complained of a sore throat. I grabbed the opportunity to get this throat swabbed and he had an ASO of 260 (DNase B was low). Some blood tests that we did showed high streptozyme (was 200 and should be below 100). He was on daily Augmentin (1000 mg) for a month and showed some improvement, but his tics have always waxed and waned anyway, so hard to know if it was because of the Augmentin.. Is now on proph Azith twice a week. We got the Cam Kinase test done (blood taken after 2 1/2 weeks on Augmentin) and it came back at 120 (mild PANDAS). I am still not convinced though. Last week we tried a 5 day prednisone course (30 mg twice a day) and he was HORRIBLE! Very aggressive and short-tempered, crying over the slightest thing. He was worse at home than at school, where he did keep it together more. He had bigger tics on the 2nd/3rd days. The 3rd day was the worst in terms of behavior and tics. The day after we finished the prednisone, he came home from school and was great - sat down and did an hour of homework without complaining and was just really NICE (moods are one of our biggest issues). He came down with a cold the next day and has been good ever since (about 3 days), although today he's getting over the cold more and is a little more feisty again. I don't know what to make of this. If he really is a PANDAS case, wouldn't that dose of Prednisone have shown improvement rather than worsening? Could the prednisone have taken effect the day after he stopped taking it? Would really appreciate any advice. Thanks P.S. This forum is fantastic!!