peglem

Maybe the girls that are getting better (if that is the case) are getting better b/c of SPONTANEOUS remission. Maybe they have SC, not PANDAS. And anyone notice that NOBODY is talking about SC??? How was that ruled out? I guess I questioned whether anyone IS actually getting better...In one breath he says they are getting better (because of his treatment) and in the next breath he says they're getting worse (because of stress over media). So my question is...how are they both getting better and worse at the same time?

I'll wait and see how the Swedo thing plays out. But, I wonder how he can claim that the girls still under his care are getting better, but the media attention is making them worse? It can't be both. So are they getting better or worse? Also, how does he know if the patients he is not treating (or, presumably, not examining) are getting worse, since he is not able to evaluate and track progress?

I think you may be on to something there.

That lack of research and pure speculation on the part of practitioners has frustrated many attempts to get my "carrier" child help. Possibly the strep was (is) just a red herring and we've assumed it was the source of the problems, without checking for other sources...IDK. But, I do know that we had several specialists informing the pediatrician that it was just carriage and need not be treated. TG the ped believed his own eyes, having witnessed horrendous behavioral outbursts that improved w/ abx. Yup...totally agree with you Peg. Dr. Kaplan said he would have called my PANDAS dd a "carrier" (I think b/c she didn't clear strep on her own after 2 mo.?)...so all these assumptions docs make about "carriers" not needing antibiotics, or "carriers" not getting PANDAS, or "carriers" not being contagious, or "carriers" having chronically elevated titers, or "carriers" not having an immune response....well, it just makes me batty. And if we disagree, they demand scientific proof (not our anecdotal real experience), even though their "truth" is based on even less evidence than ours.

That lack of research and pure speculation on the part of practitioners has frustrated many attempts to get my "carrier" child help. Possibly the strep was (is) just a red herring and we've assumed it was the source of the problems, without checking for other sources...IDK. But, I do know that we had several specialists informing the pediatrician that it was just carriage and need not be treated. TG the ped believed his own eyes, having witnessed horrendous behavioral outbursts that improved w/ abx.

I used to do tutoring for a company called Mathnasium. I've worked for several other tutoring companies and I think their system of identifying and targeting/remediating the specific skill set the student needs addressed is the best I've seen.

Yeah, but not knowing what we know and being constantly bombarded w/ theories and offers from all different directions- it must be hard to pick out a direction to move in, and how do they know which specialists are the right ones to go to?

So happy and excited for you to hear her voice again!

I think he is saying that is his offering them sanity by diagnosing them with conversion disorder. However, how THAT is "offering sanity" is completely beyond me. I took this statement to mean that he is "the voice of sanity'" as compared to all those other people who are "willy-nilly" looking for underlying causes.

I'm quite certain you are much smarter!

Whatever the cause, this is spotlighting a problem that is rampant in the medical community- sending patients to psychiatry whenever you can't figure out what is wrong with them.

Congratulations!

I don't think it was anyone who knows anything about PANDAS. One of the docs (the conversion disorder guy?) has said it can't be PANDAS because only one of the girls had a throat infection and PANDAS has a prepubertal onset. So it was ruled out by ignorance- I will trust that if Dr. T says it!

Yes, PANDAS is VERY common in siblings! If you post to the PANDAS/PITANDS forum you'll get a lot of help and support in figuring out what is going on. http://www.latitudes.org/forums/index.php?showforum=17

Just recently, although she's had past periods of this as well, my daughter had frequent (6-7/day) episodes of 15-20 minutes of whimpering/crying, followed by @ 5 minutes of aggression, then just "checks out" w/ a period of 5-15 minutes where she appears to be asleep, but really isn't. Then she gets up and is back to "normal". After a few days on clindamycin, she's not doing that anymore.

Funny, the last thing he said as we were leaving yesterday is that his momma didn't raise a quitter. He came back in w/ the scripts after the appointment and he was tearing up, then just hung out for a few minutes. He said this was the hard part of his job- having a patient that is suffering that he's not sure how to help. I was assuring him that everything was going to be alright- and yes, letting him know how much we sincerely appreciate his efforts for my child. We've been with him for 7 years, I think he's been practicing for 12-13 years, so he's like in his 30's. He is a DO and teaches pediatric classes in a DO college. He makes sure his students know about PANDAS and post infectious encephalitis/autoimmunity, since he's learned about it through treating my daughter. He has called me just to thank me for bringing it up to him and sharing research, because he's been able to help children that he is certain would have ended up on the psychiatric rollercoaster otherwise. He is married w/ 2 children. I think his wife is a stay at homer, but not sure. I know his wife and son were having some problems w/ mood kinda stuff, and ended up getting help from a DAN doctor that they could not get through the regular medical system. You're right, Philly. No matter how hard I am willing to fight for my daughter- I need the help of doctors and this man has been our angel. He's really stuck out his neck to get Allie some help. I feel like he lost his medical "innocence" w/ our daughter's case. Once he started getting negative feedback from some specialists, he begin to realize that not everybody out there has the same drive to help children that he has and it gave him an appreciation for what parents of "difficult" cases are up against. I witnessed the shift in his thinking on this over the years. I also think his difficulty in getting help for his wife and son through regular medical channels has shaped his feelings on the politics of medicine. There have been times where I was profusely grateful and apologetic about problems he's had going to bat for my child. His answer: "Ultimately, I'm accountable to God for the way I treat kids." We are blessed very much to have this practitioner in our corner...he has our prayers daily.

Brought my daughter to the ped today because I thought she had a UTI- She didn't, but brought up all these other issues she's having with photophobia and for the past few days she's had "checking out" episodes, where she just kinda falls asleep suddenly for 5-10 minutes. I don't think its a seizure because when she gets up she's not disoriented or anything. And she lays down to do it. So, I gave a long description, and Allie actually had an episode right there in the office. I also mentioned that the neuro was supposed to be ordering an MRI, but I'm having trouble getting ahold of her and don't know if it has actually been ordered. And I wondered if we could culture these sores on Allie's head- that have never completely healed in many years. And I'd like to rule out NMDA encephalitis and pituitary adenoma. So, the ped said he will call the neurologist and try to make it so we can get all this done while she is under for the MRI (don't want to waste all that anethesia on just the MRI). He's also going to talk to the dermdoc about doing a biopsy of those head wounds- also while she's under for the MRI. I love our pediatrician!

Wow. You sure have my prayers for yourself and your family.

I'm ashamed (a little) to say that I hope the "conversion disorder/mass hysteria" dx-ers are publicly humiliated.

Yes, that is helpful, thank you.

Haven't made a decision yet, or brought it to a specialist, either. Allie is still recovering from recent flare up and I've had TONS of problems reaching the neurologist who was supposed to order a contrast MRI back in October when we saw her, but apparently didn't. The contact person for the neuro keeps saying she'll do stuff and call me back- then doesn't. So I have to call her back and feel like I'm being a major PITA. But, I'd really like the MRI before we take on something major.

Usually they test TSH (thyroid stimulating hormone), T3 and T4. Also, they test for anti-thyroid antibodies.

I'm so frustrated with this story. While I won't speculate on what the cause is...How can so many people who are intelligent enough to get through med school believe in this stupid, nonsensical mass hysteria dx? Have they lost their ever-lovin' minds? Its complete crap!

Are you sure these behaviors are things that he just wants to do, rather than things he is compelled to do? It sounds more compulsive to me. If its just behavioral choices, then behavioral techniques should work. But if he's dealing with compulsions, its likely the anxiety that comes from not doing it is stronger than external rewards/punishments. It can be difficult to determine the difference between compulsions and voluntary behavior because the mind tries to make sense of it by providing reasons and/or the child is afraid to say what's going on. So, if it's compulsive behavior, he'll need to be taught how to fight the compulsions and deal with the anxiety. Their are parents on here who are way more knowledgeable than me about how to do that. I hope they'll chime in here.

Just recently discovered hashimoto's here, too.