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Everything posted by kcdc3

  1. He can absolutely live a normal life. My dd has had PANDAS for 4 years, officially diagnosed last year. During the time that we couldn't find a doc to diagnose, she was quite non-functional. Even during those times, she was still in school....her grades were barely getting by but at least she was there. It was stressful for her, but it forced her to deal with the OCD. When we finally found a doc to listen to us and who would treat, she has gotten better. She is involved in drama and singing. Not too long ago she was cast and played in Cinderella with the Theatre here. Last quarter at school she made the A/B honor roll, she is playing soccer and this past Sunday sang a solo in church in front of 500 plus people. There is hope!!!
  2. CandKRich - great song......my daughter's "theme song" is Voice of Truth by Casting Crowns. If you've ever heard the words to that, they fit perfectly for the struggles that she is going through. Google/YouTube that one if you've never heard it!!!
  3. OCD is extremely exhausting for both the child and the parent. I think that you have to pick and choose which battles you want to fight right now. I definitely would not fight them all at once. Maybe pick one to start with that you refuse to do for her. We tried CBT with some ERP when our dd was really bad off with the OCD and it didn't work for us, although I've heard that it works wonderfully for others....but she wasn't taking any antibiotics at the time, only an SSRI which made her much, much worse. When we found the right antibiotic for her, she got 95% better with only minor residual OCD left. However, we went off the meds for a little over a week and it all came back. Guess we went off way too soon. Her doctor is calling in another 30 day supply for us. I'm hoping we can gain back the ground that we lost this past week. So in your case, waiting to see if the meds will work is a reasonable option, I would think, however, finding the right one might be a longer process than you are willing to give to the OCD. It's almost like you are stuck between a rock and a hard place in that - if your daughter is anything like mine- you can try to work on the OCD, but it will fall on deaf ears until the brain recovers from whatever is bothering it(strep, Mycoplasma, Lyme, etc) enough to be able to process what you are saying. So, I think just from my experience, it's a waste of money to pay someone to do CBT if she is not physically able to process it. However, you can work on it with her a little at a time yourself. Some things our therapist had her do were: rank her fears in order from most fearful to least fearful. Then she worked on the least fearful one first. She learned various relaxation techniques to help her when she felt the anxiety coming on. She sometimes worked on a fearful thing for a month or more. She did get rid of a few things, but the harder things only came once we found the right antibiotic for her.
  4. My dd who is also on the Biaxin complained of feeling like something was in her throat - almost like a lump. Does your daughter ever say that?
  5. I am a big fan of treating a high IgG even without a high IgM. My dd had only a positive IgG. We treated with Clarithromycin (generic for Biaxin) for 30 days. As of today, she is 95% better. Her OCD is minimal, no more panic attacks, no more exorcist episodes. She has suffered for the past 4 years and no one could help. We tried all kinds of antibiotics, SSRI's, natural remedies, CBT/ERP- nothing worked. However, 30 days of Biaxin got her to 95%. I have become so accustomed to having a raging, out of control PANDAS or PITANDS, whatever you want to call it, child that I keep thinking I'm dreaming and need to wake up. Hoping we don't relapse. Treat IgG for sure.
  6. My dd has always bedwetted - never potty trained at night and she is now 10. Wondering if this is not Pandas related since she never was potty trained at night to begin with.....
  7. Oh yes, I completely agree. He has been great at getting back to us promptly and that was one thing that I was so impressed about....this lack of contact has only occured over the past 2 weeks. My problem right now is just getting our lab results. We are okay right now without the medicine, but that could change any day!! I'm sure it's overwhelming working alone and I'm not belittling that at all. It's just that we've had weird things pop up in my non-pandas children over the past week or so that the labs may explain (it was a whole family lab draw). Waiting is so hard.!!!!!!!!!!!! When you are waiting on something it makes the days seem much longer and I guess the fact that I'm waiting makes the 2 weeks seem like 2 months.
  8. We too, have been on Biaxin for 30 days. We ran out on Friday and I can not (also) get in touch with Dr. T. I am not sure if there is a proph. dose of Biaxin as in the past Dr. T had mentioned starting my dd on a proph. dose of Zith. I will say that we have come leaps and bounds in the past 30 days to almost 100%. We are at around 85 -90%. I am thrilled with that. I would like to go 10 more days at least, or at least have it on hand should I see her start to backslide. She did tell me last night that the past few days have been hard. That would coincide with stopping the Biaxin. I know he's been working on this "Saving Sammies and Samanthas" appearance.....If anyone gets in touch with him, please let him know that he has several "Sammies and Samanthas" that still need him.
  9. Wornout....how many days have you been on the Biaxin?
  10. Boy, that Zoloft taper is tough. I remember weaning my dd off of it last summer. It definitely wasn't helping, either. The withdrawals are very tough. My dd went through a lot of emotional things and even had a lot of dizziness and what she called zapping sounds in her head. She was extremely fatigued while withdrawing, also. She was not on an antibiotic at the time, so I don't have that experience to relate. I do know that once she was off the Zoloft, she improved. That's when we really realized how much the Zoloft had been making things worse. We are also on the Biaxin. We had to stop taking it for about 4 days on about day 22 due to stomach upset. Those 4 days she spiraled downward tremendously. We had her to about 80% and when she went off of it she went down to about 10 or 20 %. Needless to say, we put her back on it this past Saturday and today I am starting to see the positives creep slowly back. It is so obvious that it helps her. Biaxin does for her what I think Zoloft should do for someone that didn't have PANDAS. The Biaxin makes her the way Zoloft should have, but didn't. Weird!!! Hang in there. Even on the Biaxin, we still have those sawtooth days, but the sawtooth days are better than her best day off of the Biaxin.
  11. I hate the uncertainty of this disorder!! My dd does the same thing. Since she has been on the Biaxin, she has had tons of days where she was able to "conquer" more. Then, she's had days where she went backwards 3 or 4 steps. It seems like every single time I sit down to compose an email to her doctor to tell him that she is doing great, she backslides within a few hours! Then, when I sit down to let him know I think she has plateaued (like I did yesterday), she comes to me a few hours later and is the best she has been in the past 4 years!!!! I'm really scared right now because her doc told me to stop the Biaxin since it is starting to bother her stomach. So, she is getting ready to venture into a life without Biaxin and I'm an petrified to see what happens. She has come to about 80% with the Biaxin and we've never gotten that better with any other antibiotic. (She's a Mycoplasma P girl).
  12. My dd had LOW Lymph on her bloodwork. My pediatrician did not even mention it when he called me with the results and I only noticed it when I reviewed the bloodwork myself. Still do not know what it means.
  13. But if you have iron toxicity wouldn't you test high for Ferritin??
  14. Yes - my dd's tics increase with stress and I'm certain that the Biaxin we are on is working. Don't know how to explain that, but that is what happens. They also increase with lack of sleep. When she does not get enough sleep, the setback can last 2 - 3 days. But since being on Biaxin, we have consistently seen her go back up after a few days. Even if she is running late in the mornings (just about every morning) she will tic more in the car on the way to school, but by the time I pick her up, I'm not hearing them anymore. Before Biaxin, I was hearing them all day, all the time. We have been on Biaxin now for about 20 days, but had Zith for about 45 days prior.
  15. I went back and looked at my script and it says "Mycoplasma Panel". Not sure if this tested for all of those or not. I think it depends on what the lab includes in that panel. For instance, I think Labcorp only tests for MycoP in that specified panel.
  16. DD's doc just requested "Mycoplasma IgG and IgM"
  17. Oh, yes. Things got MUCH worse before we saw them get better. My dd's tics and OCD went way out of control. I had to pick her up from school last Friday. She raged for 3 hours, was very depressed and then wanted to just sleep. She did all sorts of weird things that day. Then, a day or so later, she was like a new kid. Tics were gone (almost completely) and OCD went down a few notches. This lasted for a solid 3 days and then her tics came back a little (emphasize - a little) on Wednesday and her OCD went back up a bit. I still consider her as having some progress ... hoping this is the sawtooth pattern of recovery.
  18. We are positive IgG (2.15) (lab scale was anything over .91 positive). We started generic Biaxin on 2/22. We had a terrible time from 2/19 through 2/27. Her tics were out of control and her OCD ramped up considerably. Then, on 2/28 it was like a light bulb came on - her tics went from out of control to next to nothing. Her OCD went down quite a bit. She had great moods. However, this past Wednesday, she started ticcing again - although milder than before the steroid burst and milder than the 2/19 - 2/27 time period. Her OCD went up a little bit on Wednesday - wondering if this is "sawtooth" pattern.....We have definitely seen a greater improvement on the Biaxin than we have on anything else in the past. I have not heard any tics today so maybe we are going back in the right direction again. (???)
  19. This is an interesting article, and am glad to see the part on there about waiting at least 2 hours before taking the pro-biotic (I did not know that!). I did notice, however, that this article is focusing primarily on Mycoplasma F, which tends to be the co-infector with Lyme. My dd has the Mycoplasma P....I think it is a totally different strain and tends to be what a lot of the PANDAS patients are presenting with that possibly do not have the strep connection.
  20. I wholeheartedly believe that the doctors that are trying to help our children are doing so because they truly care about our children. I know that the steroid burst is somewhat controversial, and can appreciate those that just want to warn others of the detrimental side to it in differential cases. I also can appreciate those who want to defend the doctors doing this. All I can do as a parent of a PANDAS/PITANDS child who presents with tics and OCD is trust the doctors who know a whole heck of a lot more than I do. I can say that I feel comfortable in my particular situation - I know my doc has listened to my child's history and has checked for Lyme (negative) and based on my child's history(which he sat and listened to for well over an hour) that she does not have TS, so I'm sure that is why a burst was used. I feel confident that in most cases the histories are being checked, but it is always good to let those know who may be new to this and using a doctor who may not be as familiar with this phenomena to be very careful. Both points well taken.
  21. I was not aware that steroid use would or could be harmful if a person has Mycoplasma - here is a link I found that says they may be beneficial and aid in recovery. I googled "steroids for treating Mycoplasma" and everything I found seemed to say that steroids could be beneficial. I did find articles that said that may not be the case for other infectious diseases, but for Mycoplasma in particular, I didn't find anything tremendously negative. Someone, please forward some published information if you know of any to the contrary for Mycoplasma specifically. I certainly do not want to do anything harmful, that's for sure!! http://www.medpagetoday.com/InfectiousDise...Pneumonia/11340
  22. I probably need to clarify - we were on the Clindimycin while on the steroids. We then switched to Clarithromycin (generic Biaxin) after we got the Mycoplasma diagnosis. We are currently on the Clarithromycin. I really do not think she has TS for several reasons, but the main reason is that she suddenly came down with tics directly after a strep infection in July. The fact that her body could do that somewhat solidified my guess that she had PANDAS with her OCD, although I can not pinpoint exactly the infection that caused it (the OCD). I think it was an undiagnosed infection that I did not know she had (as I didn't know she had the strep in July, either and the Mycoplasma - who would have ever guessed!!). I'm really trying hard to just have some patience. When things ramp up and get worse, you just always second guess yourself, I guess. It could be all coincidence and she may just be experiencing an exacerbation. But then I wonder - an exacerbation on antibiotics? So frustrating!!
  23. \ Did anything ramp up during the inital burst/ abx, and then calmed down before they ramped up again? Like a roller coaster up, down very low,then way up Did your daughter go to school duing this period? Nothing really ramped up during the burst (this was her 1st burst) except maybe her mood temporarily. She actually got better with the tics a week or so into it and the OCD was okay, but it was after the burst - 2 weeks after that her tics went crazy and the OCD got worse. She was in school during this time, as she has been before, but her symptoms increased at school as well. I would say the past 4 years have been like a roller coaster, unfortunately.
  24. DD did steroid burst 2/3/10 for 5 days, coupled with Clindimycin. She is a Mycoplasma case, not strep - or at least not currently (We did not know she was Myco until after the burst and the trial of Clindimycin). We had about 4 days within the 2 weeks following the burst where she had really good moods, no tics that I noticed and an ability to want to conquer the OCD. The 4 days were not in succession - they were variably placed throughout the 2 weeks. Starting on 2/17/10, she began ticcing almost CONSTANTLY (240 times an hour) and her OCD ramped up considerably. This lasted for one full week. The tics are back down now to about where they were before the burst, however her OCD seems to be worse than before the burst. Can anyone else relate to this?
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