stacielynne Posted January 23, 2009 Report Posted January 23, 2009 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.
greeneyes48072 Posted January 23, 2009 Report Posted January 23, 2009 Though I'm a newbie to this as well, my local Dr was the first to actually bring up the SC. He told me that the two are similar but not the same (when he saw my son, he said it was definately PANDAS not SC). He said SC is not as prevelant as it was when he was treating it 30 years ago. He said SC does not have the OCD and hyperactiviety issues and he said that the movements are very different. That they are slow fluid movements with SC, unlike the tic/repetative one with PANDAS. Hope that helps a little...
peglem Posted January 23, 2009 Report Posted January 23, 2009 I think that sydenham's and PANDAS are close enough that PANDAS should be considered a variant of Sydenham's. It was my understanding that, while OCD is not part of the dx criteria for Sydenham's, it has been observed as a very common occurrance. My thinking is that if PANDAS was included under Sydenham's Chorea, it would be more easily accepted by the medical establishment since SC's existence has already been well established (although not well reseached or understood). Much of Swedo's research was based on what is known about Sydenham's.
amy s Posted January 23, 2009 Report Posted January 23, 2009 I think that sydenham's and PANDAS are close enough that PANDAS should be considered a variant of Sydenham's. It was my understanding that, while OCD is not part of the dx criteria for Sydenham's, it has been observed as a very common occurrance. My thinking is that if PANDAS was included under Sydenham's Chorea, it would be more easily accepted by the medical establishment since SC's existence has already been well established (although not well reseached or understood). Much of Swedo's research was based on what is known about Sydenham's. peglem- I totally agree. It should be considered a variant of SC. It is sooooo similiar. It's my understanding that psychiatric symptoms (mainly OCD) is very common with SC. There were many many times "I" wondered if my dd had SC because her tremors and her gait changed so significantly. And once she had an EKG, I wondered if there was a Rheumatic Heart Disease component of it (later ruled out supposedly with an echocardiogram) because her ekg showed..."irregular left atrial rhythm, possilbe left ventricular hypertrophy and nonspecific ST abnormality." Anyway, I think it should be explored as a variant of SC. And it would do our kids/families a world of good if insurance companies, etc would recognize it as such. This is something I wonder about a lot...it seems like pandas fits on some sort of spectrum....but where does it fit? I've heard others say it can fit on the Autism spectrum, and while that may be true, I think it is closer to SC and Rheumatic Heart Disease (or maybe they're all on???). Although...interesting...before my dd's first pandas episode she would never have fit on the Autism spectrum, not even pdd-nos. But during her pandas episodes she sure did, lining up her toys and all. This is just very scary.
stacielynne Posted January 23, 2009 Author Report Posted January 23, 2009 I think that sydenham's and PANDAS are close enough that PANDAS should be considered a variant of Sydenham's. It was my understanding that, while OCD is not part of the dx criteria for Sydenham's, it has been observed as a very common occurrance. My thinking is that if PANDAS was included under Sydenham's Chorea, it would be more easily accepted by the medical establishment since SC's existence has already been well established (although not well reseached or understood). Much of Swedo's research was based on what is known about Sydenham's. I agree with you. I have his fathers medical records from when he had Sydenham Chorea. He was twelve years old at the time. The symptoms are very similar to Tylers.
P_Mom Posted January 23, 2009 Report Posted January 23, 2009 Hi!!!! I kinda jumped a little when I saw the header for your post. I, too, live in the Pittsburgh area. I have two boys with PANDAS. I could not find any docs in Pittsburgh or surrounding areas to help with this...we ended up going out to see dr.K this past August. I wish I could tell you there is a doc right around the corner to help...there just isn't at this point. (that I am aware of)..That is why MANY of us go to see dr.K. We went to Childrens Hospital in Pittsburgh and were told flat out that "PANDAS" didn't exist. We never went back. What strep expert did you see at Childrens, and what, if any, antibiotic is your child on? Take care! Kelly
stacielynne Posted January 23, 2009 Author Report Posted January 23, 2009 Hi!!!! I kinda jumped a little when I saw the header for your post. I, too, live in the Pittsburgh area. I have two boys with PANDAS. I could not find any docs in Pittsburgh or surrounding areas to help with this...we ended up going out to see dr.K this past August. I wish I could tell you there is a doc right around the corner to help...there just isn't at this point. (that I am aware of)..That is why MANY of us go to see dr.K. We went to Childrens Hospital in Pittsburgh and were told flat out that "PANDAS" didn't exist. We never went back. What strep expert did you see at Childrens, and what, if any, antibiotic is your child on? Take care! Kelly Hi Kelly- I took my son to the Pandas study at Pittsburgh Childrens Hospital. He was seen by Judith Martin, I was told she is a strep expert. He is not on antibiotics right now. I also contacted Dr.K because of diffuculty with Pittsburgh doctors. Here is my email sfalt76@yahoo.com if you would like to contact me. I would love to compare notes on this.
P_Mom Posted January 24, 2009 Report Posted January 24, 2009 Quickly cause I gotta run...then I will e-mail you later, but.. there is a PANDAS study at Childrens?!! Tell me more...what have they done for you??? Kelly
michele Posted January 24, 2009 Report Posted January 24, 2009 I recently heard of a Cleveland Clinic Dr. lecturing on PANDAS but didn't get his name from the person who told me. If anyone knows who he is please let me know. We go to the clinic but his neurologist doesn't believe in PANDAS. I'd like to find a neuro who does. I do know of a Dr. who is at Kids Link in Akron, OH named Dr. Nevada Reed who is treating 3 PANDAS cases and had patients part of the first Sweedo study. She does not accept insurance in network. You have to submit it and I am not able to go to non providers of Anthem. I talked to a mom yesterday who sees her and they use Pen VK daily as a prophylaxis and claririthromycin during flare ups or exposure to strep. This Dr. gets PANDAS and is very sympathetic because she has an autistic child. maybe I should just see her out of network and pay out of pocket. her consultation is pricey. FIY This kidslink place looks so cool. It is like a center where you can see everyone at one stop. OT, PT Neuro, psychiatry, psychology, speech etc. I really think the reason we can't get azith in OH is because of this OH valley resistance. Dr.'s here seem set against it! Michele http://www.kidslinkohio.com/family.shtml Quickly cause I gotta run...then I will e-mail you later, but.. there is a PANDAS study at Childrens?!! Tell me more...what have they done for you??? Kelly
stacielynne Posted January 24, 2009 Author Report Posted January 24, 2009 I recently heard of a Cleveland Clinic Dr. lecturing on PANDAS but didn't get his name from the person who told me. If anyone knows who he is please let me know. We go to the clinic but his neurologist doesn't believe in PANDAS. I'd like to find a neuro who does. I do know of a Dr. who is at Kids Link in Akron, OH named Dr. Nevada Reed who is treating 3 PANDAS cases and had patients part of the first Sweedo study. She does not accept insurance in network. You have to submit it and I am not able to go to non providers of Anthem. I talked to a mom yesterday who sees her and they use Pen VK daily as a prophylaxis and claririthromycin during flare ups or exposure to strep. This Dr. gets PANDAS and is very sympathetic because she has an autistic child. maybe I should just see her out of network and pay out of pocket. her consultation is pricey. FIY This kidslink place looks so cool. It is like a center where you can see everyone at one stop. OT, PT Neuro, psychiatry, psychology, speech etc. I really think the reason we can't get azith in OH is because of this OH valley resistance. Dr.'s here seem set against it! Michele http://www.kidslinkohio.com/family.shtml Quickly cause I gotta run...then I will e-mail you later, but.. there is a PANDAS study at Childrens?!! Tell me more...what have they done for you??? Kelly If you go on the Childrens Hospital of Pittsburgh site and type in Pandas, the study will come up. Tyler was seen about a month ago. They are pretty much doing research for the study and not really any treatments. They will do throat cultures and bloodwork. The doctor I spoke with is against IVIG or plasma exchange. She is sending me a letter explaining Pandas and requesting antibiotics to be given to my son. She said it will make things easier with the pediatrician. I have all the contact numbers if you need them.
P_Mom Posted January 25, 2009 Report Posted January 25, 2009 Did she give you a reason why she is against IVIG and PEX?
stacielynne Posted January 25, 2009 Author Report Posted January 25, 2009 Did she give you a reason why she is against IVIG and PEX? She thought IVIG should only be used in extreme cases. She said it needs to be researched more. We are still considering it.
amy s Posted January 25, 2009 Report Posted January 25, 2009 If you go on the Childrens Hospital of Pittsburgh site and type in Pandas, the study will come up. Tyler was seen about a month ago. They are pretty much doing research for the study and not really any treatments. They will do throat cultures and bloodwork. The doctor I spoke with is against IVIG or plasma exchange. She is sending me a letter explaining Pandas and requesting antibiotics to be given to my son. She said it will make things easier with the pediatrician. I have all the contact numbers if you need them. I'm thrilled to see that they are doing some research r/t pandas and also to strep throat and also the rheumatic heart disease one! Any and all research will be good for us. I just today had the chance to go look at the site. A long while back I had been going to any university/hospital website that I could think of to search out current studies ongoing. Also it is GREAT that the research doctor wrote a letter for you to help with the antibiotics. Too bad they don't agree with ivig/pex right now. Definately more research needs to take place so everyone feels comfortable offering a treatment plan to these kids!!!!
EAMom Posted January 26, 2009 Report Posted January 26, 2009 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.
stacielynne Posted January 26, 2009 Author Report Posted January 26, 2009 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.
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