Anyone in the Albany, NY area ever see the anyone in the pediatric inf

[AmySLP]

With hesistation, called Albany medical center's pediatric infectious disease docs to see if they treat Lyme & are familiar or at least believe in PANDAS. THey have no nurses, spoke with the receptionist who was adament that they treat PANDAS there. Of course, I questioned her up and down until she said I should have the pediatrician call. I was told 3 of there 9 doctors also treat Lyme. My pediatrician (who is a believer in PANDAS and all for long term ABX) is concerned about all the positives in the labwork-Myco P for my little one, Lyme on the Western Blot for both girls. HE feels that I should get a second opinion. He completely agrees that my 6.5 y/o has PANDAS. I tried to explain co-infections and that the panels of labwork being run by Dr. B are those that appear to be common to kids with PANDAS. He seems to think a infectious disease doctor should see my girls. I just can't bear a differing opinion. Reminded him that Allison has been seen by Dr Latimer and Dr Bouboulis with both confirming PANDAS & again with her strep history, does not dispute that. He also suggested maybe going back to her for another look at the labs and see what her recommendations are. Not sure what to do-

 

Has anyone gone to these docs on Albany? I guess you'll need to PM me if it's about docs specificaly.

 

Thanks, Amy

[airial95]

Amy,

 

I'm don't live in WNY anymore, so I can't give any input on doctors, but I can give you some thoughts on our experience.

 

I'll preface by saying there are many parents who may not agree with my philosophy, and that's understandable, they've had a long, hard road to get help and a dx and should be suspicious of potential skeptics. We had a pediatrician who dx our son at the onset, and have Dr. Murphy local to us who also confirmed - so our road to treatment was easier than most.

 

That being said, the neurologist we see for our son is somewhat of a PANDAS skeptic. He believes that there is a strep connection, and there is something to PANDAS, but without the presence of elevated titers it's not there. His initial assessment based on our pediatrician's report, and our detalied data tracking was that it was potentially a PANDAS case, but when he saw our sons blood work a few months later (he's NEVER had elevated titers, even at the time of positive swabs), he backpeddaled on his opinion a bit. We have NOT opted to look for a new neurologist who is a strong PANDAS supporter (ironically, his partner in the practice is a PANDAS believer, so that might be why he's not vehement in his denial). I feel that having Dr. Muprhy on our team as a strong voice is a good start (you have Dr. B and L), our pediatrician, who is a believer and also is in for long term abx, also admits that there is a lot he doesn't know, so always approaches each new sypmtom/issue thouroughly without just assuming PANDAS related (which we like), and by having our neurologist think it "looks" like PANDAS but not be 100% convinced because of the bloodwork, he always looks at things from different angles.

 

I'm the kind of person who likes to have as much information as I can presented to me, so I can make informaed decisions. Some of that information may include alternative theories to PANDAS, and that's okay too, as long the team works together well - which in our case, they do. I've never had our neurologist come straight out and say "NO PANDAS" since he knows and respects Murphy - but he's always looking at things from a non-PANDAS angle, which I appreciate to make sure that we're not missing some other potential problem because it "could" be a PANDAS symptoms. (For example, my son didn't present with tics until his 3rd strep infection after PANDAS dx, Murphy said PANDAS, the pediatrician said "probably PANDAS but it's new so we should look closely", and the neurologist said "nothing to worry about, minor in nature, could be associated, but no need for additional meds and EEG is okay")

 

It's just another way to look at things, I like not having our entire medical team be giant PANDAS cheerleaders, always having someone looking at things from a different angle. Hopefully it will help things from slipping through the cracks in the future.

 

Juts my two cents...not sure if it helps.

[kimballot]

Have you seen the female "Dr. B" in Albany? - she is a pediatrician who is an LLMD - recently became acquainted with lyme when she contracted it herself and is now on the ILADS list.

 

PM me if you want her contact info.

[AmySLP]

Have you seen the female "Dr. B" in Albany? - she is a pediatrician who is an LLMD - recently became acquainted with lyme when she contracted it herself and is now on the ILADS list.

 

PM me if you want her contact info.

 

Thanks, I got her contact info.

 

Amy

[AmySLP]

Amy,

 

I'm don't live in WNY anymore, so I can't give any input on doctors, but I can give you some thoughts on our experience.

 

I'll preface by saying there are many parents who may not agree with my philosophy, and that's understandable, they've had a long, hard road to get help and a dx and should be suspicious of potential skeptics. We had a pediatrician who dx our son at the onset, and have Dr. Murphy local to us who also confirmed - so our road to treatment was easier than most.

 

That being said, the neurologist we see for our son is somewhat of a PANDAS skeptic. He believes that there is a strep connection, and there is something to PANDAS, but without the presence of elevated titers it's not there. His initial assessment based on our pediatrician's report, and our detalied data tracking was that it was potentially a PANDAS case, but when he saw our sons blood work a few months later (he's NEVER had elevated titers, even at the time of positive swabs), he backpeddaled on his opinion a bit. We have NOT opted to look for a new neurologist who is a strong PANDAS supporter (ironically, his partner in the practice is a PANDAS believer, so that might be why he's not vehement in his denial). I feel that having Dr. Muprhy on our team as a strong voice is a good start (you have Dr. B and L), our pediatrician, who is a believer and also is in for long term abx, also admits that there is a lot he doesn't know, so always approaches each new sypmtom/issue thouroughly without just assuming PANDAS related (which we like), and by having our neurologist think it "looks" like PANDAS but not be 100% convinced because of the bloodwork, he always looks at things from different angles.

 

I'm the kind of person who likes to have as much information as I can presented to me, so I can make informaed decisions. Some of that information may include alternative theories to PANDAS, and that's okay too, as long the team works together well - which in our case, they do. I've never had our neurologist come straight out and say "NO PANDAS" since he knows and respects Murphy - but he's always looking at things from a non-PANDAS angle, which I appreciate to make sure that we're not missing some other potential problem because it "could" be a PANDAS symptoms. (For example, my son didn't present with tics until his 3rd strep infection after PANDAS dx, Murphy said PANDAS, the pediatrician said "probably PANDAS but it's new so we should look closely", and the neurologist said "nothing to worry about, minor in nature, could be associated, but no need for additional meds and EEG is okay")

 

It's just another way to look at things, I like not having our entire medical team be giant PANDAS cheerleaders, always having someone looking at things from a different angle. Hopefully it will help things from slipping through the cracks in the future.

 

Juts my two cents...not sure if it helps.

 

It does help- I'll take it all with a grain of salt. Use info that I think may be valuable and discard the rest. Like your son, my daughter at age 4, had not rise in titers after about 7 months of confirmed strep (with cultures & rapids). That was with 3 draws during that interval and one at the very end in April 2009 when we saw Latimer. Of course, 1st thing this doc asks for is ASO titer history, instead I'll be gathering the info as to why the titer rise is not necessary for a clinical dx of PANDAS (which my pediatrician was clear that this was not the reason for our visit). Our ped. told me to stay on the track with the Lyme with this group. I'll go to make my ped happy, he's done a lot for us and is very respectful of my opinion. Hoping to get Igenex kit today (ordered it Monday). Guess we will be going to Albany with just the western blot results from Quest.