Pittsburgh Area

[michele]

Just wondering what sort of Dr. you all are getting long term antibiotics from? Is your ped on board and prescribing antibiotics or is there a specialist? Does Dr. K prescribe antibiotics over state border for anyone? Since our immunologist left the Rainbow Children's hospital his other partners will not prescribe the antibiotics. I am trying to get ped to prescribe but she feels this is out of her realm. We see psychiatry and they will not prescribe. Neurology will not prescribe it either. I feel I am back at square one. Who do I turn to next? Does anyone have the name of a Dr. in OH who will prescribe long term antibiotics for a case of diagnosed PANDAS syndrome? It shouldn't be this hard. The immunolgy at Akron would only use Pen VK.

 

It doesn't seem to help us to go out of state because they won't treat with meds. I have seen Dr. Murphy, talked to Dr. K. in a phone consult, seen DAN! Dr. Demio and done phone consults with all of the above. I just need one Dr. willing to write long term antibiotics. Help! I called the ped today for a refill. I am praying she will come through! Any suggestions? We saw psych today and got those meds easily. They won't touch the antibiotics though.

 

Michele

Hi Stacie,

I have a really good paper by Trifiletti (Neurologist from NJ) (and the Italians) which discusses PANDAS vs. SC. I can e-mail it to you if interested. Unfortunately, it's in PDF format so I don't know how to post it to this forum.

 

 

I would love for you to email that to me. My email is sfalt76@yahoo.

[EAMom]

Hi Stacie...article e-mailed to you. Let me know if you didn't get it or can't open it.

[greeneyes48072]

Hi Michele,

 

I don't know how far you are willing to Dr, but my Dr is out of Bingham Farms Mi. He only needed to see us one time and does all follow up by phone...let me know if you would like his number...

[michele]

I wonder if he would prescribe over state lines? What sort of Dr. is he? What does he prescribe for you and is he covered by insurance?

 

We have a juv rheum in Toledo appointment in March. I hate to have to drive that far 3 and a half hours each way but I guess someone on here knew of her and gave me her name that she has treated PANDAS. I think we have the psych part figured out. It is just treating the strep exposure and long term maintance.

 

I can't believe Dr. K gave me his phone consult notes for a steroid burst and his opinions on treatmnet but what sort of Dr. (ped?)does he think would follow his advice? Mine won't.

You have to get a Dr. who knows what the PANDAS does to these kids.

Maybe seeing Dr. K is the best thing. He didn't think it was necessary but he also didn't have any Dr's to suggest in OH.

 

Thanks for responding. I was beginning to get frustrated here because I have not gotten any feedback from the last few posts.

 

Michele

Hi Michele,

 

I don't know how far you are willing to Dr, but my Dr is out of Bingham Farms Mi. He only needed to see us one time and does all follow up by phone...let me know if you would like his number...

[lss]

Michele,

 

You have to get very lucky to find a doctor who will follow Dr. K's advise. I found a peds doctor here in Texas who admitted not knowing anything about Pandas, but was open to learning about it. She ACTUALLY called Dr. K, and he told her what test to run, and about the antibiotics. I also got lucky to find a psych doctor who knew about Pandas and was willing to try other drugs beside anti-psych drugs first. Didn't work for us, but we tried clonidine and Tenex for the tics.

 

Linda

 

I wonder if he would prescribe over state lines? What sort of Dr. is he? What does he prescribe for you and is he covered by insurance?

 

We have a juv rheum in Toledo appointment in March. I hate to have to drive that far 3 and a half hours each way but I guess someone on here knew of her and gave me her name that she has treated PANDAS. I think we have the psych part figured out. It is just treating the strep exposure and long term maintance.

 

I can't believe Dr. K gave me his phone consult notes for a steroid burst and his opinions on treatmnet but what sort of Dr. (ped?)does he think would follow his advice? Mine won't.

You have to get a Dr. who knows what the PANDAS does to these kids.

Maybe seeing Dr. K is the best thing. He didn't think it was necessary but he also didn't have any Dr's to suggest in OH.

 

Thanks for responding. I was beginning to get frustrated here because I have not gotten any feedback from the last few posts.

 

Michele

Hi Michele,

 

I don't know how far you are willing to Dr, but my Dr is out of Bingham Farms Mi. He only needed to see us one time and does all follow up by phone...let me know if you would like his number...

[greeneyes48072]

He's a pediatrician. After I started seeing him I found him online at places like Nickelodeon.com (http://www.iparenting.com/experts/bios/88.php). He seems to love his job just for the sake of it. I don't know what the restrictions are to cross state lines. He know's of Dr. K, but I don't believe he has contacted him as of yet. He's also trying to provide heathcare to kids of incarcerated parents who are falling through the system...ppmkids.org. You may find someone good close to home too...

 

BTW I think I sent his info to the wrong person...sorry about that...

[wthrockmorton]

I have taken my son to see several doctors in Pittsburgh. I haven't come across any really willing to help. I was able to take him to a strep expert at Childrens Hospital. She seemed interested in the family history of his Dad having Sydenham Chorea. She is sending me a letter so I wont have problems getting antibiotic from the Pediatrician. I spoke to Dr. K and I am keeping the IVIG in mind. Presently we are working with a wellness doctor on supplements and diet.

Does any one know of a Doctor in Pittsburgh or surrounding areas? Does anyone have any thoughts on the connection between Pandas and Sydenham Chorea? The more I research they seem to be one of the same. I watched Dr. Swedo Pandas speech and found out certain antiobiotic(azr) doesn't work on strep found in ohio valley, PA. When Tyler got sick last year that was the Antibiotic he was on. Really nice to find out after the fact. Thank god for Dr. Swedo. Any thoughts or comments would be great.

 

 

Who is Dr K?

[greeneyes48072]

Here's Dr K's site:

 

http://webpediatrics.com/pandas.html

[wthrockmorton]

I have taken my son to see several doctors in Pittsburgh. I haven't come across any really willing to help. I was able to take him to a strep expert at Childrens Hospital. She seemed interested in the family history of his Dad having Sydenham Chorea. She is sending me a letter so I wont have problems getting antibiotic from the Pediatrician. I spoke to Dr. K and I am keeping the IVIG in mind. Presently we are working with a wellness doctor on supplements and diet.

Does any one know of a Doctor in Pittsburgh or surrounding areas? Does anyone have any thoughts on the connection between Pandas and Sydenham Chorea? The more I research they seem to be one of the same. I watched Dr. Swedo Pandas speech and found out certain antiobiotic(azr) doesn't work on strep found in ohio valley, PA. When Tyler got sick last year that was the Antibiotic he was on. Really nice to find out after the fact. Thank god for Dr. Swedo. Any thoughts or comments would be great.

 

 

Who is Dr K?

 

Thanks very much!