Santi

My son loves to duct tape the house and wrap tape around objects. OT's actually use this in some of their sessions. Its a sensory thing. I let my son do it (anything to relax him) and then we throw it out. He also likes to hoard odd objects. A

Still hoping (OK..praying!!) for a dramatic turnaround. It's now day 6 (her 1st day off prednisone) and dd was an emotional wreck again this morning. She started the day with a complete melt down about what to wear. She was literally screaming at me and hysterical. Then 20 minutes later she hugging & kissing me talling me how much she loves me. She's at school now, so perhaps things will start to turnaround by this evening. This happened to us to on the morning of day 6. Still showing signs of OCD (wetting clothes) but the day at school went well and by the evening lots of calming. Calm for about 2-3 days after and then some winding up again. Everyday has been different. Andrea

Does prednisone stay in the body for 2 weeks? Does anyone know about how long?

My son just finished the steroid burst and we are on the 9th day. He too has questionable TS. The 5 days on the pred was tough with the 5th being the worst. He had raging OCD the 5th night and lots of tics. Dr. K said not to worry about the behaviors during the 5 days. Focus on the behaviors from day 6-21. Starting from day 6 we have noticed significant calming (almost like he is in a trance). He has had 1-2 tantrums each day but shorter and much less intense. He is different. As for the tics, they are much better! He too tics as frequently as your child some days. The mornings start with no tics and by the afternoon he has some-but much less. My son also tested positive for Mycoplasma P so he does currently have an infection. Hang it there. I wish your child the best! Andrea

How often do you do IVIG? Is it really better than a good course of abx? Andrea

We have just finished a 5-day prednisone burst and watching our son's behaviors for the next 2 weeks to see if there are improvements for diagnostic purposes. Does anyone know the specifics of this goal? Do we want to see improvements for the full 2 weeks or even for a few days? How much improvement do we want to see? Full recovery from all behaviors or just some behaviors would be acceptable? Andrea

We are different. Things were bad during the 5 day burst. Then by the 6th day things got better, i.e. calm, focused, independent w/work by 7th day really good w/1 tantrum. So far so good. Not sure what to expect. Andrea

Thats a great start! Good luck with the rest. Andrea

My son's tics became worse on Azith.500mg. We stopped at 10days and it got better. Andrea

My son's tics increased on 500mg Azith. and we took him off. He did ok on 140mg Azith. Andrea

I am sure it is a factor. I would not stop there-I would make sure there are no tick-borne illnesses involved either. This is a fascinating video about mycolplasma. http://video.google.com/videoplay?docid=5412136843859172148 The lecturer is Dr. Garth Nicholson, a respected expert on Gulf War Illness. From what I understand mycoplasma can cause all sorts of symptoms and it is not easy to get rid of, just like Lyme Disease. In fact, it often is a co-infection with Lyme and other tick-borne illnesses. Any child with mycoplasma should be fully evaluated for lyme, bartonella, babesia, etc. Blood tests miss a lot of lyme and other tick-borne diseases b/c the tests are not very sensitive so it remains a clinical diagnosis. To find a lyme literate MD who would understand mycoplasma and tick-borne illnesses, contact: Director: Barbara L. Buchman, International Lyme and Associated Diseases Society Address: PO Box 341461 Bethesda, Maryland 20827-1461 Phone: 301.263.1080 Fax: 301.263.0776 Email: contact@ilads.org Excellent video! thanks for sending it. Andrea

So, I think you would have to test it once to get a baseline, then test again later to see if the number has gone up or down. That may tell you if there is an infection? I admit, I get nervous doing a steroid burst without being on antibiotics. If he starts to worsen on the steroid, I would call the dr and tell him. That may mean he still has the infection and the steroid is making it worse by weakening the immune system. Now, some kids on here have tested + for Mycoplasma while being on Zith or Zith didn't seem to clear it. Perhaps they will chime in to explain. Some have had to go onto Biaxin. I have not gone through the Mycoplasma route with my son and hopefully those who have will give more insight. Did your son have physical symptoms of Mycoplasma such as a cough when he was diagnosed with it? If so, does he still have it? I ask since if he did the cough should be gone 2 weeks after finishing meds. I know the cough continues after taking the abx, but should be gone by the 2 week mark. He had a chronic cough about a year ago and he was treated with the inhalers. That was the first thing I thought of. Perhaps he's had this for a long time.

Presently, he is not on any abx. He finished a course of Azith. 500mg about 2 weeks ago. His pediatrician states that the abx should have killedd the infection and the raised levels to Mycoplasma P. only says that he HAD an infection. It sounds similar to what we went through with the ASO....that it only shows that he HAD strep. We have a good pediatrican but he told me he's not knowledgeable about all of this. Does anyone know if the IgM is positive (Myco P) then does that state a present or past infection? Andrea

Hi Melanie, I am working with Dr. K in chicago. Not sure when he will get back to me about my son because he may be waiting for the pred. burst to finish. But I will certainly relay the info to you once I get it....unless you want to call him first. Andrea

Yes, I would love to get that information. Thank you to all for your valueable input. Andrea I am sure it is a factor. I would not stop there-I would make sure there are no tick-borne illnesses involved either. This is a fascinating video about mycolplasma. http://video.google.com/videoplay?docid=5412136843859172148 The lecturer is Dr. Garth Nicholson, a respected expert on Gulf War Illness. From what I understand mycoplasma can cause all sorts of symptoms and it is not easy to get rid of, just like Lyme Disease. In fact, it often is a co-infection with Lyme and other tick-borne illnesses. Any child with mycoplasma should be fully evaluated for lyme, bartonella, babesia, etc. Blood tests miss a lot of lyme and other tick-borne diseases b/c the tests are not very sensitive so it remains a clinical diagnosis. To find a lyme literate MD who would understand mycoplasma and tick-borne illnesses, contact: Director: Barbara L. Buchman, International Lyme and Associated Diseases Society Address: PO Box 341461 Bethesda, Maryland 20827-1461 Phone: 301.263.1080 Fax: 301.263.0776 Email: contact@ilads.org

Could be -- is your son already on azith? 0.76 U/L or less: Negative - No clinically significant amount of M. pneumoniae IgM antibody detected. 0.77-0.95 U/L: Low Positive - M. pneumoniae-specific IgM presumptively detected. Collection of a follow-up sample in one to two weeks is recommended to assure reactivity. 0.96 U/L or greater: Positive - Highly significant amount of M. pneumoniae-specific IgM antibody detected. However, low levels of IgM antibodies may occasionally persist for more than 12 months post-infection. My son did finish a 10 day course on Azith. about 2 weeks ago. Interesting that his Myco. P. is still positive after that abx. I guess we will need something else. I am working with Dr. K and will give feedback once I get answers from him. He may wait out this pred. burst we are on. Andrea

I just found out my son is Positive for Mycoplasma P. IgM and nobody to talk to. What does this mean in terms of PANDAS? Is it possible that I finally found out what is wrong with him after 5 years? Andrea

My son is on the 5 day pred. burst. I understand that every child responds differently but I'm interested in finding out which day you started seeing improvements in behaviors? Andrea

Thank you. I will have to get it then. Andrea

How long did it take till he felt better? My son just freaked out about 3 mins. and stopped. Nothing w/behaviors yet. I'm so worried. Didn't sleep much last night. Andrea

Anyone know how long it takes to get results back for Myco Plasma antibody test? Andrea

I just gave my son 25mg Pred. for 1st time and he freaked out that it bothers his stomach and its making him fatter, says its a "weird feeling". I think its his OCD but any reports of strange feelings when taking this? He did eat. Andrea

My Ds16 had exacerbation of pandas symptoms three months ago. It was more than ocd which was alway main issue, but this time it was with rage with aggression. He broke doors, plates, and glasses. He pushed me and left me with bruise. ( this never happened before) His blood tests done 2 months after his exacerbation came back with high ASO titer and high Myco. P ( also with viral rashes) DB How did you treat? Andrea