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New to this, how to get doctors to provide treatment?


JPdad
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So here is the story with my son over the past 9 months. He had a minor sore throat before Christmas which went away after a day or two so we didn't take him in to the doctor. About 2 weeks later he developed blinking tics, OCD arm tapping, adventitous movements, hyperactivity, and mood swings. At this point we went to our pediatrician concerning these issues and the first thing she did was test for strep, which was positive. After a week of antibiotics, he was 90% better with a full recovery taking about 5-6 weeks.

 

He was fine for about 2 months, then he started getting a series of ear infections. Each infection brought a flare up of symptoms, but none were as bad as when he had strep.

 

Long story short, we are 9 months into this and can't get any treatment for him other than antibiotics for an existing infection. We saw an ENT doc to try and get tubes in his ears for ear infections and possibly his Tonsils and Adenoids out, but he told us he'd have to have Strep 9 times in a year to get the tonsils out, and needed to have at least one more ear infection before he'd do tube and adeniod removal. (We've had 6 ear infections in 6 months.) We also made two trips to Childrens Hospital to see a Neurologist and a PANDAS "expert" at the Infectious Disease department. Their only treatment recommendations were antibiotics for infection and to see a psychiatrist for any movement disorders.

 

I have seen a number of people on this board talk about IVIG, T&A removals etc... but all none of my doctors want to give us any treatment outside of antibiotics. Can anybody give me some guidance on how to get some treatments? I am in Pittsburgh, PA and can't find any real experts on this, or anyone willing to treat it.

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You can check out the list on this site or pandas resource network of treating doctors and find one close to you. Sounds like you need a new team of doctors. All it takes is one doctor to order a t&a for you. If you wish to go that route then keep trying until you find a dr. willing to help.

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You can check out the list on this site or pandas resource network of treating doctors and find one close to you. Sounds like you need a new team of doctors. All it takes is one doctor to order a t&a for you. If you wish to go that route then keep trying until you find a dr. willing to help.

 

How have others found doctors who will treat PANDAS? I think my pediatrician is great, but her knowledge on this is limited. The "experts" she has sent us to have been zero help at all. I have searched and haven't found any good recommendations for docs in the Pittsburgh area. Who has prescribed the IVIG treatment fpr your kids? Was it a pediatrician, specialist or what???

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JP Dad,

 

Sorry about your son. I understand how hugely frustrating this is. My DS showed his first PANDAS symptoms in 1997 and had a huge explosion in 1998. No one knew anything then and there was very little they could do to help. Sometimes I think it is worse today when the condition is pretty well understood but still it can be so hard to get proper treatment. I think there are very few pediatricians that would do IVIG--you'd generally have to go to a specialist. The closest to you is probably Dr. Latimer in Maryland. I'd go ahead and make an appointment, but you probably won't get in until December. You could also try Dr. Trifelletti in NJ, who may be available earlier. He also does phone consults, which would be useful especially if you could get a sympathetic pediatrician to work with his recommendations.

 

In the meantime, you might do what I had to do at one point--call up every pediatric practice in your area and ask if any of the pediatricians have expereience in treating PANDAS. If you are willing to travel I could give you the name of an ENT in the DC area that works with PANDAS--from what you relate I don't think he'd have a problem with the tubes and perhaps would do T and A as well.

 

Finally, your DS's outbreak may be recent enough that he might qualify for the IVIG trials at the NIH. I'd call them up and see if you can get your DS in. It's definitely worth a shot.

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JP Dad,

 

Sorry about your son. I understand how hugely frustrating this is. My DS showed his first PANDAS symptoms in 1997 and had a huge explosion in 1998. No one knew anything then and there was very little they could do to help. Sometimes I think it is worse today when the condition is pretty well understood but still it can be so hard to get proper treatment. I think there are very few pediatricians that would do IVIG--you'd generally have to go to a specialist. The closest to you is probably Dr. Latimer in Maryland. I'd go ahead and make an appointment, but you probably won't get in until December. You could also try Dr. Trifelletti in NJ, who may be available earlier. He also does phone consults, which would be useful especially if you could get a sympathetic pediatrician to work with his recommendations.

 

In the meantime, you might do what I had to do at one point--call up every pediatric practice in your area and ask if any of the pediatricians have expereience in treating PANDAS. If you are willing to travel I could give you the name of an ENT in the DC area that works with PANDAS--from what you relate I don't think he'd have a problem with the tubes and perhaps would do T and A as well.

 

Finally, your DS's outbreak may be recent enough that he might qualify for the IVIG trials at the NIH. I'd call them up and see if you can get your DS in. It's definitely worth a shot.

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We also made two trips to Childrens Hospital to see a Neurologist and a PANDAS "expert" at the Infectious Disease department. Their only treatment recommendations were antibiotics for infection and to see a psychiatrist for any movement disorders.

 

 

Let me guess..CHOP.

 

Make an appt with Dr. Latimer. Get in with Dr. T. while you are waiting if Dr. Latimer has a long wait. Dr. Bouboulis in CT is another doc (immunologist) who is a good PANDAS doc (will treat aggressively)...those are the top 3 treating PANDAS docs in the Northeast. Don't expect to find answers locally (Pittsburgh). Many PANDAS kids (in the northeast) end up seeing 2-3 of these 3 docs.

 

There is also an Azith trial (Florida, not sure if it is also going on in Mass) http://clinicaltrials.gov/ct2/show/NCT01617083?term=pandas&rank=4

 

In the meantime, I would check everyone in the household for strep (throat culture).

 

Also, I personally don't know if IVIG will be as effective until you can get to the bottom of (stop) the ear infections?

Edited by EAMom
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Unfortunately, most of us here have to travel to get treatment for our children. Its a sad reality. We are leaving for Chicago today to go see Dr K. My DS had ivig w/ Dr K a yr ago last May. My pediatrician is clueless and doesn't seem to want to try and educate herself still, after 3yrs of PANDAS in my DS. I send her the latest in peer reviewed articles/research/clinical trials and when we have an appt, she acts like I'm talking Chinese. We are getting ready to find someone new that will be willing to at least educate themselves a little on PANDAS.

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I agree with the others. You need to stop wasting your precious energy with doctors who aren't "proven helpers". Make an appointment with one of the top specialist. You have several to choose from in your area. There is a list of physicians by state on the pinned thread at the top of the page. It's a shame this is how it has to be but your focus at present is on your child. At this point you probably can't change the minds of closed minded health care professionals. Fortunately there is a whole group of people working on that as we speak. Just do what you must to get your family healthy. You will feel so validated after your first visit with a PANDAS specialist. Best of luck.

 

Dedee

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Let me guess..CHOP.

 

Yes, Children's Hospital of Pittsburgh. I was referred to their PANDAS "specialist" Dr. Judith Martin, who might just be the single worst doctor I have ever encountered in my life. She basically sat there and interviewed us on our first visit, with her back turned to my son typing into her computer. When she got enough info for her researched she told us thanks and to schedule a follow up in 6 months. Not once single piece of advice or treatment option other than take antibiotics when there is an infection. So we waited the 6 months for her next "PANDAS clinic" day where she again interviewed us, this time in the presence of a psychiatrist. They left the room, huddled in the hallway, and wouldn't you know it, the psychiatrist recommended that if there were still symptoms to set an appointment a psychiatrist. When I pressed her to offer another treatment, she reluctantly tried to test my son for strep. When he wouldn't open his mouth wide enough, she urged we 'go home and practice.' I went to my pediatrician the next day, had him tested, and they found a nasty double ear infection. After 2 days of augmentin he was back to normal.

 

Thanks for the advice everyone. I am still processing it all to try and figure what to do next.

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Let me guess..CHOP.

 

Yes, Children's Hospital of Pittsburgh. I was referred to their PANDAS "specialist" Dr. Judith Martin, who might just be the single worst doctor I have ever encountered in my life. She basically sat there and interviewed us on our first visit, with her back turned to my son typing into her computer. When she got enough info for her researched she told us thanks and to schedule a follow up in 6 months. Not once single piece of advice or treatment option other than take antibiotics when there is an infection. So we waited the 6 months for her next "PANDAS clinic" day where she again interviewed us, this time in the presence of a psychiatrist. They left the room, huddled in the hallway, and wouldn't you know it, the psychiatrist recommended that if there were still symptoms to set an appointment a psychiatrist. When I pressed her to offer another treatment, she reluctantly tried to test my son for strep. When he wouldn't open his mouth wide enough, she urged we 'go home and practice.' I went to my pediatrician the next day, had him tested, and they found a nasty double ear infection. After 2 days of augmentin he was back to normal.

 

Thanks for the advice everyone. I am still processing it all to try and figure what to do next.

 

yeah...I have heard the "PANDAS clinic" is basically a waste of time.

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