Infectious Disease Doctor?

[Wickedmaineah]

Has anyone been referred to or been seen by an Infectious Disease Doctor for the treatment of PANDAS? My son's team has decided that they need to get Infectious Disease on board because after multiple rounds of antibiotics they can still not get my son's strep titers to go down.

Thanks,

Christina

[Worried_Dad]

Hope you have better luck than we did, Christina. We tried 3 different ID docs over the years, and they were worse than no help: they actually discouraged our PCP from offering abx despite elevated strep titers because "chasing titers in the absence of symptoms is not warranted." (All of the PANDAS rapid-onset neuopsych symptoms "didn't count": they dismissed these as unrelated, suggested psych meds, and offered referrals to psychiatrists.)

 

When we begged them to contact the experts we had consulted (Dr. K, Dr. L, Dr. Leckman, Dr. Cunningham, Dr. Chugani), they either dismissed these experts' opinions as "anecdotal and irrelevant, because they haven't published" or (for Drs. Leckman and Cunningham, who have published widely) took refuge behind the good old excuse "controversial and unproven theories."

 

Sorry to sound bitter... but these ID docs weren't even willing to order any tests, much less consider treatments. And their "expert opinions" that PANDAS was not a factor in our ds's illness made it much harder to find help from other local docs.

 

If you can't find another PANDAS family who has seen the ID doc and had a positive experience, I'd proceed with extreme caution. Best of luck!

[ziva]

Hi Christina,

We have not had good luck with an ID doctor. I'm not sure where you're located, so maybe you'll have better luck than we have. We saw someone at Childrens Memorial in Chicago. To make a really long story short...the Dr. actually said to me that my kids need psychiatric help.....and this is all in thier head. I of course had a hard time with that. I decided to set a good example for my kids that day and told him that we would have to agree to disagree.

 

I would get the name of the ID dr. recommended and give them a call first.

 

I also have to agree with WorriedDad about thier "expert opinion" making it harder to get help for my two PANDAS kids.

[Iowadawn]

Hope you have better luck than we did, Christina. We tried 3 different ID docs over the years, and they were worse than no help: they actually discouraged our PCP from offering abx despite elevated strep titers because "chasing titers in the absence of symptoms is not warranted." (All of the PANDAS rapid-onset neuopsych symptoms "didn't count": they dismissed these as unrelated, suggested psych meds, and offered referrals to psychiatrists.)

 

When we begged them to contact the experts we had consulted (Dr. K, Dr. L, Dr. Leckman, Dr. Cunningham, Dr. Chugani), they either dismissed these experts' opinions as "anecdotal and irrelevant, because they haven't published" or (for Drs. Leckman and Cunningham, who have published widely) took refuge behind the good old excuse "controversial and unproven theories."

 

Sorry to sound bitter... but these ID docs weren't even willing to order any tests, much less consider treatments. And their "expert opinions" that PANDAS was not a factor in our ds's illness made it much harder to find help from other local docs.

 

If you can't find another PANDAS family who has seen the ID doc and had a positive experience, I'd proceed with extreme caution. Best of luck!

 

 

Similar experience here with an ID. DAwn

[Wickedmaineah]

Thanks for everyone's information and experiences. I will call the Infectious Disease doctors today and speak with them to get what their knowledge of PANDAS is before wasting our time and theirs.

 

We can not switch to another antbiotic and at this time DS can not take anymore antibiotics at all. We are highly allergic and if we find one we can take it is usually short lived. For instance in 2009 I was placed in intensive care due to an antibiotic for a tooth infection. This medicine I previously could take. My DS has done 3 doses of Zith and now can't take anymore because he began to have an allergic reaction when he did 10 days in a row. Antibiotics are life threatening for myself and my kids. The thing that is supposed to help the most can actually kill us. I don't want a doctor that will continually just prescribe antibiotics. We have to look at other methods of treatment, including natural and holistic due to our allergies.

 

I understand many people travel a long distance for treatment. I don't feel the need to do that at this time. My DS doctor is willing to do IVIG right here at our local hospital. The hospital has a wonderful pediatric floor. We are not convinced this needs to be his next step yet and are willing to bring on more team members (infectious disease) if they can be supportive. I am a huge believer in wrapping the child with a supportive team. Every new person brings a new idea, new perspective, and new eyes to the issues DS is dealing with. It's called the Wraparound approach which is huge here in Maine. As a social worker myself, I have gone through extensive training in this area and find it highly supportive in assisting my son. Everyone has their own team for their child, just look around at all the people you see. An important thing to remember, just becuase your team works for you it may not work for someone else.

 

I am glad to get people's perspectives in regards to Infectious Disease. Now I can formulate the best questions to ask to see if they should be part of the team or whether they will be just a nuisance.