Just got a call from my daughter's pediatrician

[peglem]

He was just calling to let me know that he'd just treated a 6 year old girl for PANDAS, and he was so thrilled at her recovery. He said it was like a miracle! When she came to him, she was completely dysfunctional w/ sudden onset OCD, and of course. her parents were devastated w/ worry. He just wanted to let me know that he's been able to help several children that he thinks otherwise would have had very poor psychiatric prognosis, because of his experience w/ my daughter and he's so thrilled that he's able to do something to help these kids!!! He told me he was sorry that Allie has gone through so much because doctors would not try to help (we found this doc when Allie was 10) and he wished he had known what to do to help her sooner, but hoped it would be a comfort to us to know that her ordeal has served to save other children. Mostly, I think he just wanted to share the joy he felt in seeing this latest patient recover w/ somebody (me) that he knew would truly appreciate what had happened. God sure blessed us w/ this physician- and this physician has been blessed w/ my child as well!

[momaine]

He was just calling to let me know that he'd just treated a 6 year old girl for PANDAS, and he was so thrilled at her recovery. He said it was like a miracle! When she came to him, she was completely dysfunctional w/ sudden onset OCD, and of course. her parents were devastated w/ worry. He just wanted to let me know that he's been able to help several children that he thinks otherwise would have had very poor psychiatric prognosis, because of his experience w/ my daughter and he's so thrilled that he's able to do something to help these kids!!! He told me he was sorry that Allie has gone through so much because doctors would not try to help (we found this doc when Allie was 10) and he wished he had known what to do to help her sooner, but hoped it would be a comfort to us to know that her ordeal has served to save other children. Mostly, I think he just wanted to share the joy he felt in seeing this latest patient recover w/ somebody (me) that he knew would truly appreciate what had happened. God sure blessed us w/ this physician- and this physician has been blessed w/ my child as well!

That is awesome!!! Thanks for sharing.

Angela

[kimballot]

Peg - I've said before that you are a role model for us all and your persistence and demeanor have helped not only Allie but many other children! Thank you!!

[tantrums]

That is wonderful!!

 

I have to say, both our family doctor and immunologist (who he was just seeing for regular allergies/croup) have been WONDERFUL, researching themselves and doing their best to help while admitting their own limitations. I feel confident they will use this knowledge to help others in the future.

 

I've had parents say to me "why on earth would you have such faith in a doctor that YOU had to tell what was wrong with your son??!!". I defend both of these doctors to the hilt! They listened to me, did their own research and concurred. I see nothing wrong with that! I have all the respect in the world for it in fact. And they are both wonderful people, parents and doctors who I know will go on to help other children with pandas now~!

[mama2alex]

That's amazing and wonderful! What a gem. Have you posted his name on the "Doctors who've helped with PANDAS" thread?

[melanie]

I would love to hear dannys neurologist say the same.Im thrilled to hear that some children will never have to go through what some of ours have.I kindof feel angry and resentful right now,and on the other hand very happy for the familys.

[peglem]

That is wonderful!!

 

I have to say, both our family doctor and immunologist (who he was just seeing for regular allergies/croup) have been WONDERFUL, researching themselves and doing their best to help while admitting their own limitations. I feel confident they will use this knowledge to help others in the future.

 

I've had parents say to me "why on earth would you have such faith in a doctor that YOU had to tell what was wrong with your son??!!". I defend both of these doctors to the hilt! They listened to me, did their own research and concurred. I see nothing wrong with that! I have all the respect in the world for it in fact. And they are both wonderful people, parents and doctors who I know will go on to help other children with pandas now~!

I just had to bold and re-size that part as I think it is the key to all this! A doctor who has the humility to say "I don't know, tell me more" instead of "I've never heard of it so it doesn't exist" is putting the patient above their own ego and will likely do whatever they can to help!

[Phasmid]

What a wonderful story. I wish he could give my son's ped. a call. I'm done trying to convert him.

[peglem]

Peg - I've said before that you are a role model for us all and your persistence and demeanor have helped not only Allie but many other children! Thank you!!

Thank you for the kind words. But, I really don't feel like I've done anything special, unless hanging on for dear life as your world crumbles around you is special. But, I've done nothing on my own. I've been helped by cyber friends (here mostly), and God seems to have done the rest.

Honestly, my greatest fear has been dying w/o Allie being okay w/o me... What does it say about the state of medicine in our society that a little suffering girl was turned away by so many physicians for even routine medical care? Well, not exactly turned away...just not treated or properly examined.

In the final analysis, w/o this pediatrician, we'd be nowhere!

[peglem]

That's amazing and wonderful! What a gem. Have you posted his name on the "Doctors who've helped with PANDAS" thread?

I didn't, but somebody else did. I didn't want to w/o his permission, as I suspect he's taken some flack over treating my daughter "experimentally." (How's that for irony- they won't help her, but they'll sure harass the doctor who does!)

He did tell me though in our phone conversation tonight to go ahead and refer people. He doesn't like the idea that there's so many kids out there who aren't getting the help they need and he knows now how hard it is for parents to find a doctor who will help.

[sptcmom]

I would love to hear dannys neurologist say the same.Im thrilled to hear that some children will never have to go through what some of ours have.I kindof feel angry and resentful right now,and on the other hand very happy for the familys.

.

Who is the neuro? The neuro at RWJ Dr.Hossain is fairly knowledgeable about Pandas, IVIG and is trying to include that in his resident training program as well. He was DrTs classmate in Cornell I believe. He ref me to Dr T as the expert on Pandas and movement disorders. Dr Barabas in Wall township is also peds neuro and treats Pandas but only wth abx from what I've heard.

[matis_mom]

Here is to turning this thing around, one physician at a time! Cheers!

[MomWithOCDSon]

Thanks, Peg! We can collectively cross one more "professional cynic" off our list!

 

It makes me all that much more fired up about our local pediatric infectious disease "expert," Stanford Shulman; turns out HE'S the one our pediatrician has been "listening to" on the topic of PANDAS, and all he ever says is he doesn't believe in it. Like that's some sort of scientifically-achieved conclusion! Luckily, our pediatrician is thus far willing to prescribe abx, but I can't even talk to her about switching abx, or steroid bursts or . . . heaven forbid . . . IVIG. She shuts down when I want to talk about the bigger picture or implications.

 

Meanwhile, one of our other doctors pulled some PANDAS research articles off some professional database he has access to, and among them was an article by Shulman. All naysaying PANDAS. No research, just a review of other folks' research with which he begs to differ.

 

But what really kills me is HE QUOTES HIMSELF OVER AND OVER! Seriously, about 6 of his total 10 sources in the article are previous things he's written or been quoted in! How's THAT for self-serving, narcissistic, circular logic?!

 

May there prove to be many, many, MANY more docs like yours, Peg! And kudos to each PANDAS family who manages to inch them toward The Light!

[peglem]

I think its absolutely critical that that dang NIMH page gets updated!!!! Back when we 1st saw this pediatrician and I 1st approached him about PANDAS, he was very willing to pursue it....but that recommend to NOT do prophylactic abx, or IVIG, and treat the OCD psychiatrically was all he had to go on...til I found y'all and began bringing him articles. Although, he did read Swedo's studies on his own, but could not get the immuno to do IVIG. Doctor's who are willing to help should get some up-to-date info from a reputable source like the NIMH, instead of that crap they're serving up right now!

[saidie10]

He was just calling to let me know that he'd just treated a 6 year old girl for PANDAS, and he was so thrilled at her recovery. He said it was like a miracle! When she came to him, she was completely dysfunctional w/ sudden onset OCD, and of course. her parents were devastated w/ worry. He just wanted to let me know that he's been able to help several children that he thinks otherwise would have had very poor psychiatric prognosis, because of his experience w/ my daughter and he's so thrilled that he's able to do something to help these kids!!! He told me he was sorry that Allie has gone through so much because doctors would not try to help (we found this doc when Allie was 10) and he wished he had known what to do to help her sooner, but hoped it would be a comfort to us to know that her ordeal has served to save other children. Mostly, I think he just wanted to share the joy he felt in seeing this latest patient recover w/ somebody (me) that he knew would truly appreciate what had happened. God sure blessed us w/ this physician- and this physician has been blessed w/ my child as well!

 

This is wonderful news! What a great feeling for you and obviously this Doctor is overjoyed that he is helping people! If only more doctors would open their eyes and they too could experience how wonderful it would be to be able to help children suffering with this.