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Everything posted by kcdc3

  1. Working on trying to get a phone consult with Dr. T. Living in NC - getting a doc to do more than 30 days of abx is like winning the gold medal. I found one willing to do so, but he is extremely difficult to contact. He is the one that gave the Zith for the past 2 months. We took our last one yesterday, but I wasn't seeing any improvement anyway. He said I should have already seen improvement when he bumped us to 500 mg. I think he only has a handful of PANDAS patients. I don't think he's had his hands in this quite enough for me.
  2. Amox for 30 days - seen drastic improvement within 5 days - 99%. Siblings both came down with strep then, and she regressed. (Tics came right before the strep diagnosis and the Amox). After siblings got well, she was still on Amox, but never regained improvement. Zith 250 mg for 30 days, then 500 mg for another 30 days. Doctor says that if we were going to see improvement, we would have seen it by now. The only thing that I can say we put in the mix was Inositol about 2 days before we started 500 mg. I think we'll definitely stop taking that. I would say the setbacks took us to baseline, or what we had started with. The tics are a different story. I think they are worse now, when they had went completely away after starting Zith at 250 mg. The only thing that I am coorelating with the setbacks are viruses -either had by her or by someone in the family. But how do you get past that??? Put her in a bubble?? We have not tried IVIG or PEX. I don't want to try something that advanced without even knowing all I need to know about the PANDAS. I am working on getting a consult with Dr. T. Hoping hoping hoping he can give me more guidance than I have gotten so far!!!!!
  3. Are there any other parents out there where absolutely nothing is helping??? Sometimes I feel so alone in this. We've been battling this for 4 years. Just when we think our dd is showing signs of improvement, we go backwards 3 or 4 steps. We've tried everything. We've tried natural remedies, we've tried CBT/ERP, we've tried Zoloft, we've tried Inositol, we've tried 500 mg of Zith daily, we've gotten CAMk scores in the 160's. Does that fact that nothing works support the idea of PANDAS or disprove it??? The only positive thing I have seen has been a decrease in rages. I've seen tics come, tics go away and then come back worse than before. I've seen obsessions/compulsions come and then go away and then come back again worse. It's an emotional rollercoaster and I want to get off!!!!!
  4. Dr. Perrin - the one who did work with Swedo -she is not seeing patients right now. I contacted her not too long ago and she said to get the word out that she was not able to see private practice patients at this time. She is listed under the North Carolina section.
  5. Well, if she is doing that to prevent something from happening (whether it is something that could actually happen or not), then I would think it might be more OCD related? Does she have any other OCD symptoms? My pediatrician asked my dd why she did the sounds. She said to him that she felt like she needed to do them because she felt better afterwards. My pediatrician said that is the way that most kids describe tics, therefore, he felt like her sounds were tics. So each time I would hear a new sound, I would ask her why she was doing that. Most of the time, it's the same expalantion - I just feel better if I do it. There have been occasions where she will say "If I don't do that sound, I will get fat" or whatever she is obsessed about. (She has major OCD/anxiety/anorexia/body dysm. ) I think at those times, the sounds may just be OCD related. I posted here because my specialist told me he thought all the sounds were OCD related, but reading the replies here it sure sounds like my ped was right.
  6. Yes, she was treated with 30 days of Amoxicillian when she came down with that strep infection. The tics came on about 8 days or so into the treatment, however, that is the time that her brother and sister both came down with strep. The tics stayed with her until we started Zith in December - they went away again for a little while, then came back slightly. Now they are back pretty strong and we are still on Zith. I am linking the increases to viruses. When they came back slightly, I had a virus. When they came back pretty strong, she had a virus that was then passed around the whole family. They were worse while the virus was hanging around - I have noticed that they are not quite as bad right now, but worse than in December (pre-virus).
  7. My daughter started making "sounds" after her last strep infection. I have had differing opinions from doctors as to whether or not they are tics or OCD. My pediatrician says they are tics, my dd's specialists thinks they are OCD related. When asking my dd when she makes these "sounds" why she does them she says that she has an "urge to do them and I feel better once I do them". She does not do them to prevent something from happening (which I would think would be more OCD). However, she can control the urge if she wants to -but she says she "doesn't feel right unless she does it". Any opinions from you guys - do you think this sounds like tics to you?
  8. I agree- food issues are big stressors. My dd 10 has every symptom of anorexia except throwing up. She avoids food if she can. She thinks everything is "too much". If we have soup and baked potatoes for dinner, she thinks she can only have one or the other - not both. I, too, am up for any suggestions anyone has. We have tried therapy, which fails everytime. SSRI's make her much, much worse. Antibiotics have helped with her mood in general, but we can not seem to crack the food issues. If something does not happen, we will have to send her to an intensive inpatient facility over the summer. It does not help at all, that everywhere you turn in a magazine or on TV they are touting the newest way to loose weight and our culture puts so much weight on being thin. I wish they would stop and think what this is doing to our children!!! Sorry, just venting.
  9. We have clothing issues as well. I let her pick out her own clothes, try them on, etc. We buy only the ones she loves, but once we get home all bets are off and she usually will not wear them. I have made a deal with her. I allow her to wear the old worn out ones that she loves on most days. I give her a few days notice when I expect her to wear one of the nicer outfits. I keep reminding her that she will need to wear that certain outfit in 2 days, 1 day, etc. When that day comes, I absolutely will not give in no matter what kind of fit that she throws (and she will throw a major fit - to the point of needing physical restraining). It's hard on me and the rest of the family for that hour or so that she's throwing the fit, but she does get over it and the rest of the day is usually pleasant. I always remind her at the end of the day that wearing that outfit wasn't so bad after all and that she got "used to it". She does agree, but it never helps the next go round!!!
  10. Age 6: Germs Age 7: Spiders, Germs, Snakes, Bugs Age 8: INTENSE fear of being fat, obese people, poisons (things that were not poison at all, but she thought they were), death, the dark, skeletons, the list could go on and on Age 9: Still has the intense fear of being fat, obese people, but the rest of the stuff has went away.
  11. Susan: What dose of zith are you on and how long have you been on it?
  12. I would have to say we are chronic. Onset at age 7 - not overnight, but within a few weeks. Onset was not severe, either - which is what made us totally miss this thing for so many years. She would have episodes of OCD that would last a few months and then completely go away - we attributed it to a "phase". Each episode of OCD would come back with a different obsession, but just a little more intense each time. I would say we really "blew up" at age 8. She went through a period of tics at age 9- which went away with abx treatment. Right now, she has anorexia as her main issue (no throwing up yet - but an intense -very intense- fear of becoming fat). Her mood has improved on abx, as has her handwriting. She still has urinary control issues and OCD related compulsions. She has only 2 documented strep infections (but I didn't take her in every time she ran a fever, etc, either). The 1st was 3 or so weeks before the 1st minor OCD phase and the 2nd was in July of this year when she developed tics.
  13. [ Is your child on abs when they get tested? When you say yours test negative, is that through a rapid,culture, and/or titer test? Finally, what abs has she been on and for what amount of time? The last time she was tested, she was not on antibiotics - the test was negative via rapid culture. I'm not sure that they have ever checked her titers before we started investigating PANDAS. She went in back in July when we were really pushing our ped. to give her the antibiotics - she went totally symptom free and he said he would only give abx if she had strep. I begged him to do a culture even though she was symptom free and it came back positive. Her titers remained elevated until November (which I understand is normal). After that, I had her tested when she was exposed to strep and they have been negative. She is currently on Zith at 500 mg per day and has been on it since Dec. 11. She just went from 250 per day to 500 a week ago. Since being on Zith we have noticed some improvement - her handwriting is remarkably better and we have less meltdowns, although they are still present. Her OCD seems to have remained at baseline. Because the OCD is what is so prevalent in our situation, I am just trying to figure out when she would go into what would be called an "exacerbation." I guess I can't really judge it based on just that.
  14. Does the strep test always come out positive when he has the irrational meltdowns and OCD? For me - it has been negative 90% of the time. However, about 20 -30 % of the time, I find that she has been around someone with strep.
  15. We talk alot of about "exacerbations" with PANDAS. Can you respond as to what this means specifically for you? How long do they last - or do you ever even see a "break" from them? My husband is so tired of the disorder that he is beginning to question PANDAS in the first place because our dd never seems to catch a break. If we get a break, it may be for about 3 days. I think we go through the "exacerbations" for so long because she's had this for 4 years.
  16. We just went from 250 mg zith to 500 mg zith per day. Our doc wants us to be on name brand and pharmacies around here don't keep it in stock. We had the script called in on 12/30 and we had enough zith to last until Sunday. Due to the holiday, the zith did not arrive at the pharmacy until today. Therefore, she missed her dose yesterday (Monday). She was ticcing today - although not as much as before - but she did tic (same tic as before) and that had completely went away once she started the abx. Her tics today were nearly 48 hours after her last dose. We were not able to pick the new script up until today at around 4 (so she went from Sun at 5 until Tues at 4 without a dose).
  17. We started at the 1300 mg dose per her doctor's instructions. I don't think 1300 mg is her target dose - I think he eventually wants to get it higher. I have continued with it despite the problems I saw over the weekend, and she seems to be leveling out now. Maybe it was just somewhat of a shock to her system? Not sure. Maybe it was something else. We were around a lot of family over the weekend - her immune system could have been triggered in some way that had nothing to do with Inositol.
  18. We've been on the azith 250 once a day for 30 days. We increased to 500 mg last week. Symptoms that were worse - the meltdowns, the OCD. To begin with she had the OCD, but we had seen a positive progression with that - not a whole lot - but some. The meltdowns had decreased significantly since being on the Zith. However, after the Inositol, meltdowns came back full force. The OCD was worse, also.
  19. We started our dd on Inositol - probably 5 days ago. I know that it is possibly too early to be seeing any signs of change for the better or for the worse, but for some reason she has gotten worse in the past 5 days. Specifically regressed 2 days after beginning Inositiol. She is also on 500 mg Zith per day and we had seen some improvment - although not tremendous yet. I really don't have anything else to contribute the regression to at this point being that the regression coincided with the beginning of Inositol. Has anyone else experienced this? She is taking 1300 mg Inositol daily.
  20. Please remind me if you have had him tested with the Cunningham study and what his score was?
  21. Forgive me for being dumb here, but what exactly are they doing an MRI on? My dd's doc has briefly mentioned a T & A due to swollen tonsills, but not actively looking at it at the moment.
  22. A pediatric dentist. In conversation I was telling him about my DD having OCD and he mentioned PANDAS. Strange that I heard it from a dentist and not from my own pediatrician!!!
  23. Yes, exactly. The lack of documented strep infections + low titers makes me think it's more possibly TS. And, well, the Pediatrician doesn't help since she's convinced it's not PANDAS! Is it possible that he may have had strep and you not have known it or taken him in to have him tested at some point? That is what our doc thinks may have happened with our daughter. She had what we believe to definitely be a strep infection a couple of weeks before this all started 3 years ago, but the strep test did not pick it up. Our doc said that strep tests miss 10%. This is all hind-sight. Looking back over the years, our dd probably had numerous strep episodes that were not diagnosed because she had frequent sore throats that I did not have diagnosed because I just attributed them to being viral and they went away. Her most recent strep came without any symptoms whatsoever and the culture was positive. Her Camk score was 163 - definitely in PANDAS range.
  24. What is her weight and what dose is she on of Zith? She is 80 pounds and on 250 mg per day.
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