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Everything posted by lfran

  1. I agree with that. I think there is a real selection bias going on here, since it is the parents who are driving this and not the front-line doctors. I also think that in about 5 years, there will have been a sea change in diagnosis, testing, and treatment for childhood OCD and tics -- and it will have been because of parents like the ones in this group. I suspect the "highly intellligent" child and "highly educated" parent describes the current PANDAS phenotype because we are more likely to notice changes in children with higher intellect and because parents with higher educat
  2. That is wonderful. Congrats! I wonder what it feels like inside the heads of these children. When my low thyroid is untreated, I feel all foggy brained and can't concentrate at all. Then, with the right dose of meds, everything is easy. I wonder if it is like that?
  3. Also, ask for their best ped. phlebotomist -- call ahead and go there when he/she is there. We did that and travel over 30 minutes to the lab with a phlebotomist that my son likes -- he goes very willingly to her and terribly for others.
  4. You're absolutely right. We have both in the house. Thanks!
  5. I was just reading the drug insert for Augmentin and it says not to use in children under 88 pounds, as safety and effectiveness have not been confirmed for these children. Has anyone's doctor talked about this? Anyone else have this as an issue?
  6. Hi all. I received a cam Kinase score for one of my sons two weeks ago, but not the other results. I know some others have posted about receiving their anti neuronal antibody results recently. Is anyone else still waiting? We sent in the blood about a month ago. Just curious if we're the only ones. Thanks.
  7. Are you in the LA area? We're in Pasadena. I had called her, and her nurse questioned her and she said she would treat PANDAS with abx in addition to going the whole natural route. I used to want the natural route, but now that I think it is PANDAS, I would rather just live a more "normal" life and have abx and other medical treatments. I am looking for a local doctor in this area, too, and am considering her but haven't gone forward with it. Several people have really liked Dr. Lin in Irvine.
  8. My DS9 has also had PANDAS for many years -- just about 5. He presents mostly with tics. His episodes do not seem to have gotten worse with time but vary in intensity. He just started antibiotics a month or so ago. He is 76 pounds and was put on 500 mg azith per day at first and he just switched to 500 mg augmentin 2x day a few days ago. They have both been helpful. I think the Augmentin may be really working, but it is a bit too soon to tell. He just told me last night about several of his PANDAS related anxieties that seem to have disappeared (his words) and was "reminiscing" about
  9. How can I tell if a boy has yeast? Or, I can put him on candida clear or other OTC just in case? Yes, that's the same doses we gave. My daughter weighed @ 100lbs at the time. Except for the yeast, she did well on it. In fact after we went back to zith and got the yeast under control, she had improved considerably. Its hard to see improvement during yeast.
  10. The middle of the Chinese restaurant was us. But my son wasn't on any meds or IVIG at all, but his high level tics just stopped and stayed stopped for weeks. It was mid-meal. It was really really odd.
  11. Thanks. He's 76 pounds, and if I did both, he'd be on 1000 Augmentin and 500 mg zith. each day. Is that similar to what you did? And, did you spread them throughout the day? Also, the tongue tic that's coming through seems to be only when reading, which is when all of his tics break through. However, he is a total bookworm and would read all day long if he could, so it's sometimes hard to judge. But we just spent half an hour playing a game and I saw almost nothing. So, that's good news.
  12. Has anyone been told to give both at the same time? I *think* that's what we were told to do, but I can't get confirmation and I am not going to do it until I am sure that's what was prescribed. I was told to switch him from azith to Augmenting, so DS8 went of azith two days ago and onto Augmentin (500 mg 2x day). I think things are getting worse. I am seeing a tongue-movement tic that is pretty worrisome to me -- he keeps sticking it out, but sort of sideways. He's had a tongue thrust one before, but not like this. I'm out of azith, so I can't even really switch back at this time.
  13. My son has had motor and vocal tics for almost 5 years. They switch every few weeks or so to something new; as you say, some are more obvious and/or annoying than others. The worst for us were jaw-dropping (I was afraid he would choke on food or while swimming) and cheek slapping (loud and obvious -- could hear him from rooms away). The "best" were the quiet ones -- abdominal tensing, etc. But I agree that the frequency is probably what is important to track, since our history shows that they morph from one to another to another with no rhyme or reason. (Although I wonder, since almost all
  14. Our family of 4 is all high, although only DS9 is PANDAS. We are trying to start abx tx for the rest of us.
  15. Sooooo awesome. THANK YOU, THANK YOU, THANK YOU!
  16. Thanks! Yes, I am excited...and also cautious....hoping hoping hoping it lasts. He is on a 30 day trial of azith....now I need to get a new rx to continue it.
  17. Out here in AZ, I start voting at 10:00 PM- the beginning of the voting day! This is so awesome!
  18. Per request of Dr. T, my HMO supposedly ordered a Lyme Western Blot for DS9. What I got back was a Borrelia Burgdorferi Antibody, EIA test. His blood was non-reactive. This is *not* Western blot, right? Is this ELISA? Is this useful at all? Also got results for streptococcs pneumoniae IGG (14 serotypes) back. There are no reference ranges, bt most are less than 0.3; others are 1.2, 6, 3.2 and 27.3. He is old enough that I think he was vaccinated with the 7 serotype strains, not 14 strains. Sooooo...any thoughts on what this means? I will be sending the results to Dr. T, but wa
  19. My son is doing really really well on 15 mg/kg of zithromax. It took about 18 days to kick in.
  20. Yes, and for those who don't know, any health professional can sign off on the request for this test, not just an MD. For me, it was easier to get my chiropractor to request the great plains tests that I wanted than to make an MD appointment. It may depend on the state, though. You can call great plains and ask. You can get a test here... http://www.greatplainslaboratory.com/home/eng/yeast_test.asp This is for the stool test but you can also look at the OAT test that tests for yeast too. Your doctor can do a test for yeast too, I think, but it is not a common practice.
  21. We are seeing a great improvement on my son after about 2.5 weeks on 15 mg/kg of azithromycin. Haven't posted this yet as I didn't want to jinx it, but it's been a strong enough improvement for about 5 days now that I'm almost ready to report it! -- Lfran
  22. This is a little early for me to post, because I have only seen improvements for two days, but... DS8 is on 3rd week of abx and we were seeing lno improvement -- actually it was getting worse. He was also doing a nose snort tic. We changed probiotics from kefir (included strep probiotics) to a pill that didn't and added xylitol nose spray and xylitol gum (am still searching for toothpaste with a flavor he likes). Saw an immediate and dramatic improvement. These things are easy to try at home. (Thank you to the person who posted last week that xylitol has anti-strep properties!) A
  23. When you find that out, please let us know. I'm pinning my hopes on antibiotics!
  24. No, no eating issues at all (eats everything and always with a good appetite. We joke that he's been eating like a teenager since he's been a toddler. But he's no at all overweight -- just has a high metabolism, like I do.) No SSRIs, no other meds at all. A more gradual onset of symptoms -- not classic overnight -- but always a high DNASE. Only one positive culture in 5 years. But whole family just showed high ASO and DNASE levels and we all had negative throat cultures. Go figure. But, vis a vis serotonin, he has always been a very deep and very heavy sleeper. Even as an inf
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