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Everything posted by Indigo

  1. We see a doctor in PA but I have to say I was so impressed that Dr. K will email you back personally and very fast with answers! What a great doc to do that!
  2. I've read here that Advil has helped with PANDAS symptoms...do you all think this is safe to use on a regular basis? Dd has been really struggling in the past week after coming off of the prednisone...it has been so hard to watch! And hard to deal with! I gave her an advil last night when she was so angry she couldn't talk at anyone without screaming. This morning she is much calmer. She is still on clarithromycin...our next step was going to be IVIG but when we went on Sat. to get a blood test to test for the IGA allergy and get her strep titers again and test her thyroid, she was so bal
  3. What do you think? Boswellia is an herbal anti-inflammatory...do you think this might help with PANDAS symptoms? I'm trying dd on it, the doctor said it couldn't do any harm, so I could try it.
  4. Did she have IVIG treatment as well or something else? Thanks for the info, will pass along to my doctor.
  5. My doctor is in PA and I guess we are his experiment with PANDAS, lol. There has been one other patient with PANDAS at the practice with another doctor but not as classic as my dd is what they said. He's a DAN doctor. The one treatment that he would like me to try is something called peptide shots which are used on patients with autoimmune like eczema, chronic hives, etc. There is no certainty that it will work and she may have to get up to 5 treatments (just a shot). I have been going back and forth between trying these (which do no harm and no side effects) and just going with the IVIG.
  6. EAmom....is that similar to clarithromycin? My dd's PANDAS suddenly came back today...it was her first day off of the prednisone...ahhhhhh...grrrrrr. She was doing so great on the prednisone. If only that were a cure!! She's back on the clarithromycin but it doesn't seem to be doing a thing. I gave her an Advil this evening as well.
  7. My doctor has put dd on clarithromycin...and I see Dr. K uses Azith...is there a big difference between these? I'm wondering if I should request the Azith.
  8. My doctor is considering using the subcutaneous IVIG in his office. My insurance said they will cover it when I called. But I'm still nervous about it!
  9. It's wonderful to see another doctor talking about and recognizing PANDAS! I wonder why he doesn't talk about IVIG as treatment.
  10. Yes, I completely agree that defiance is a huge part of PANDAS symptoms for us....it comes with raging, hyperactivity, tics...and when the anti's or prednisone is working she is soooo compliant, we are amazed.
  11. No, I haven't found much information online. Apparently they have used them successfully for those with autoimmune conditions like eczema, hives, etc.
  12. Has anyone heard of these? My doctor is suggesting using this instead of IVIG since our insurance won't cover it with a PANDAS dx. I think it does a similar thing by "resetting" the immune system. They are used for autoimmune conditions...but then PANDAS might not be autoimmune, I have read here. I'm not sure what to do. She is THRIVING on the prednisone. I just can't even describe how well she is doing. So why does the prednisone not just stop the inflammation? Why would it come back or would it only come back if she was exposed to strep again?
  13. Another question is how do you get a diagnosis code for IVIG for PANDAS treatment? My doctor is having a hard time with this.
  14. My dd has PANDAS and she doesn't get sick...she gets very hyper, manic, doesn't sleep well and can't fall asleep, screams/rages, severe separation anxiety, throat clearing tics. This week she was put on prednisone before we do the IVIG treatment (and because she had a huge hives reaction to the antibiotic after a month on it)...it's amazing, truly absolutely amazing at the quiet, compliant child that is revealed.
  15. Hello, My dd will be receiving the IVIG treatment soon...for parent who have btdt, what is the actual treatment like? I know my dd will need a sedative, she is 74 pounds and absolutely fights all medical tests/interventions...even getting her to walk into the hospital will be an impossibility without sedatives...I hope that they can find one that works. How long is the actual treatment itself? Does it hurt or make her feel funny in any way? Thanks for the help in advance!
  16. Now I am being tested for mono...it will take at least a week to get my results back. I'm so tired and my throat feels funny but not like full blown strep....however my dd is having a full blown PANDAS episode today. It's awful! We were given zoloft if we need it because we haven't been able to get her off the Tennex completely and we stopped it this week. But today is awful, the anxiety/OCD is awful, tantrums, crying all day, throat clearing tics. She's still on the antibiotics and on the diflucan. I'm not sure what to do for her today. Any thoughts for me? My DAN doctor is out of
  17. 1. In retrospect, at what age do you believe that your child's PANDAS/PITAND began? (not necessarily the same time it was diagnosed) Age 22 months 2. At what age did your child begin to speak? 10 months 3. At what age did your child begin to draw recognizable objects (e.g. faces, vehicles)? Age 5 4. Has your child had food allergies? To what? gluten intolerance 5. Does your child have changes in bowel function during a PANDAS exacerbation? Haven't thought about that, but perhaps diarrhea.... 6. Does your child have joint hypermobility, i.e. can he/she touch his/her thu
  18. Thanks...I'm not sure we will need to use it or not. Now that the clarithromycin has revealed a brand new child, we have weaned my dd off all of her meds...but we were given a zoloft prescription just in case we needed it to replace the guanfacine which we just weaned her off of for the first time in two years. At this point she is doing very well of all meds, but she has a tendency for hyperactivity although the rest of her symptoms have disappeared on the clarithromycin.
  19. Have you used SSRI's for your PANDAS kids, which one, and what were the symptoms you were trying to treat/eliminate with them? Why is it SSRI's that are recommended for Pandas by some doctors?
  20. My dd is on Clarithromycin for the PANDAS for now and diflucan for yeast.
  21. Thank you guys, so much for your answers.... No, her symptoms are not near as severe as they were in May now that she is on antibiotic....just a bit more, making me nervous we're going to have a full blown outburst again, but actually today, on the diflucan and me on antibiotic she is quite calm again. ???? The allergy analogy makes a huge amount of sense because that is exactly how she seems to respond.
  22. Melatonin for our dd was a huge lifesaver after seven years of no sleep...it's interesting how Melatonin is also an anti-inflammatory, I wonder if that is why it helps the PANDAS kiddos so much...
  23. Hello, I have had strep throat since May. I am now on my fifth antibiotic. Meanwhile, my dd has been on Clarithromycin for 3 weeks now to treat the PANDAS. This past weekend she was very agitated...I even called her doctor to see if maybe we should try something else or up the nystatin or something. Well, he did give her Diflucan, but this was before I presented with strep starting yesterday. Sooo...would strep have been in my system this past weekend with my symptoms starting yesterday....causing dd's increased agitation? Then today I started antibiotic and she had her worst da
  24. Hi, We have not started probiotics, but I did request nystatin which my doctor gladly gave to us. She gets really irritable on the anti's without the nystatin. I see an increase in irritability even if I give it to her too late in the morning.
  25. Caryn...just wondering if there is any link between celiac's and PANDAS...we all are celiac here and it's in several of my family members.
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