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Everything posted by britmom

  1. My bad. Would've realized that if I'd read all the posts on this thread
  2. Buster Answered the survey but it isn't showing up on the map. Zip code is 98074 (nr Seattle, WA)
  3. Fantastic!! Can't quite believe it! THANK YOU for organizing us all and making this happen!!
  4. 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..
  5. 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 se
  6. 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 s
  7. 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.
  8. I was also interested to see replies to this. I guess that no replies means that no-one has regrets - which is great news!
  9. 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 wh
  10. 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???
  11. 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?
  12. 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 th
  13. 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.
  14. 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
  15. 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..
  16. 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.
  17. 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.
  18. 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.
  19. 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 f
  20. 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 r
  21. 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.
  22. 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.
  23. 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 extrem
  24. 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 (DNa
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