looks like I am back in the "club"...

[bubbasmom]

Giant thank you to all who offered so much support to me after our visit with Dr L. We have since consulted with Dr T and he tells me this "club" is exactly where I belong. He has confirmed a diagnosis of PANDAS (classic onset at age 6-7) that has now broadened into a somewhat complex PITANDS situation. We are still going to follow up with the neurolgical testing recommended by Dr L, but Dr T is going to run some more labs to dig into my son's immune system a bit further to see if we can find any specific trigger. Also met with our psychiatrist and therapist, neither one of whom feels my son fits the bipolar criteria. Our therapist in particular is excited about Dr T's "exorcist" observation as a neurological storm of fight or flight chemicals released as he feels this very accurately describes my son's experience. He observes that my son is able to manage his obsessions when he is healthy, but not when sick. And he seems to be ALWAYS sick this year. To me, it's as if the virus/bacteria enters his system, we have this rage/terror attack and then a few days later the physical symptoms show up. As is his pattern, my son had another one of the "exorcist" episodes on Sunday after going 8 days without. And yesterday - sick AGAIN!! THis time looks like a cold (congestion, hacking cough, no fever). I'm assuming its viral since he's been on Omnicef for a month, and am hesitant to drag him into the ped. only for her to frown at me and tell me it's viral.... I wish I could figure out why he having so many upper respiratory problems this year!!! On the bright side, he is calm, as usually when the illness hits he feels so icky he can't muster up the energy to do anything much but whine... Thanks again to all (especially Dr T!) for your help and support.

[nomoz]

Giant thank you to all who offered so much support to me after our visit with Dr L. We have since consulted with Dr T and he tells me this "club" is exactly where I belong. He has confirmed a diagnosis of PANDAS (classic onset at age 6-7) that has now broadened into a somewhat complex PITANDS situation. We are still going to follow up with the neurolgical testing recommended by Dr L, but Dr T is going to run some more labs to dig into my son's immune system a bit further to see if we can find any specific trigger. Also met with our psychiatrist and therapist, neither one of whom feels my son fits the bipolar criteria. Our therapist in particular is excited about Dr T's "exorcist" observation as a neurological storm of fight or flight chemicals released as he feels this very accurately describes my son's experience. He observes that my son is able to manage his obsessions when he is healthy, but not when sick. And he seems to be ALWAYS sick this year. To me, it's as if the virus/bacteria enters his system, we have this rage/terror attack and then a few days later the physical symptoms show up. As is his pattern, my son had another one of the "exorcist" episodes on Sunday after going 8 days without. And yesterday - sick AGAIN!! THis time looks like a cold (congestion, hacking cough, no fever). I'm assuming its viral since he's been on Omnicef for a month, and am hesitant to drag him into the ped. only for her to frown at me and tell me it's viral.... I wish I could figure out why he having so many upper respiratory problems this year!!! On the bright side, he is calm, as usually when the illness hits he feels so icky he can't muster up the energy to do anything much but whine... Thanks again to all (especially Dr T!) for your help and support.

 

Just wanted to let you know that the EXACT same thing happens to my daughter pre-illness!! She was really episodic on Saturday - and Monday, ran a fever of 102 - she has diarrhea also and has been out of school all week! She also seems to be sick way more than the average 7 year old. I want to say she has missed approx 25-30 school days so far since September. Between Oct and Jan she had H1N1 and micoplasm. And she is very very calm when sick. So much so, it's almost like she is "herself." She never looks really healthy, except in the summer, when she spends some time outside. She has dark circles under her eyes quite a bit. Also bipolar-like rage episodes, which come sometimes on just waking up!! We have an appt. with Dr. T. this weekend... I've heard so much good about him, and can't wait!!

God bless you and your family, and I wish you the best outcome possible. It sounds like you are really doing all you can...

BTW With this recent dry cough, did you get him tested for micoplasm? My daughter had a dry cough, and she tested very high positive for it.

[tired mom]

Mycro P has gotten a lot of attention here lately. It seems some cases of PANDAS may actually be caused by having Mycro P as the original trigger. Granted, it would them fall into the PITANDS catagory more, but I still group them together. That's why it has been talked about here more. A few recently have had blood tests show their child have/had it. Some w/o symptoms. Then more have started to mention a hacking cough (w/o the mention of why they have the cough). My non-PANDAS son was dx with it a couple weeks ago and, hence, why I am paranoid.

 

If the child has PANDAS with the original trigger of strep, they could then begin to have PANDAS symptoms surface with other infections. As is the case with my PANDAS son. Whether they be viruses, allergies, sinus infection, the list goes on. So, honestly, I would not be surprised if a PANDAS child contracted Mycro P and had a PANDAS exacerbation as a result of it.

 

What med did she go on and for how long? How are her PANDAS symptoms now? Did they improve in the weeks following the Mycro P infection or have they not gotten better? Is she currently on any abx?

zithro to treat the mycroplasma then 1000mg of augmentin for 20 days. whats odd is when she got sick she was tested for strep(neg) h1n1(neg)and givin a cough med prescription. i returned to dr. a few days later because she was still real sick and that is when she was put on zithromx. Two weeks later she was breaking out in hives and a blood test should positive for mycroplasma p. I was told she had already been treated for it with the zithro but I insisted on the augmentin because she was vey symptomatic. Her rages and ocd have definately increased sometimes real scary...

[EAMom]

Hi tired mom....

what was your dd's dose of Zith. and how long was she one it for? Also, was the augmentin 500mg x daily?

[thereishope]

tired mom,

 

Are you thinking the Mycro P didn't clear? If so, Augmentin will not kill Mycro P.