Saw Immunologist today

[Suzan]

We saw an immunologist today and things went well. She said we were her third patient with PANDAS and she was very interested in it. She agreed to contact Madaline Cunningham and Swedo at the NIH. She was also willing to develop a team approach and work with Latimer. We are having no issues after the PEX right now but she agreed to do IVIG if needed in the future according to their protocol. She also felt we neeed to test my son for CVID. We had a ton of labs drawn which will be back in 4 weeks when we go back. She allergy tested him today and he had a significant reaction to probably 75-80% of the things she tested for. She did some additional blood testing but said we definitely needed to pursue allergy shots. She said his immune system is in a "hyper state" and we needed to work to calm it down. Overall, it was a productive visit. We are heading to see LAtimer again next week.

 

mom_md.... how do you feel on the topic of the allergy shots for PANDAS patients? We saw the doc today and we really like her. She will be talking to us at some point about allergy shots too. She's also interested in revaccinating for prevnar due to the failed pneu titers. Do you have any thoughts on this? I let her know my worry about any vaccines at this point. She and I will talk about it all again after she fully reviewes all dd's records.

 

I was especially impressed because she wants our entire medical history from birth, as much of it as we can find. We go back in a month and will take it from there. I feel like she will do her best to find out the underlying immune issues we are having so I would recommend her since she has a high interest in PANDAS even though she is still in the learning phase.

 

Susan

[mom md]

We saw an immunologist today and things went well. She said we were her third patient with PANDAS and she was very interested in it. She agreed to contact Madaline Cunningham and Swedo at the NIH. She was also willing to develop a team approach and work with Latimer. We are having no issues after the PEX right now but she agreed to do IVIG if needed in the future according to their protocol. She also felt we neeed to test my son for CVID. We had a ton of labs drawn which will be back in 4 weeks when we go back. She allergy tested him today and he had a significant reaction to probably 75-80% of the things she tested for. She did some additional blood testing but said we definitely needed to pursue allergy shots. She said his immune system is in a "hyper state" and we needed to work to calm it down. Overall, it was a productive visit. We are heading to see LAtimer again next week.

 

mom_md.... how do you feel on the topic of the allergy shots for PANDAS patients? We saw the doc today and we really like her. She will be talking to us at some point about allergy shots too. She's also interested in revaccinating for prevnar due to the failed pneu titers. Do you have any thoughts on this? I let her know my worry about any vaccines at this point. She and I will talk about it all again after she fully reviewes all dd's records.

 

I was especially impressed because she wants our entire medical history from birth, as much of it as we can find. We go back in a month and will take it from there. I feel like she will do her best to find out the underlying immune issues we are having so I would recommend her since she has a high interest in PANDAS even though she is still in the learning phase.

That is great. Just finding someone that is willing to take the torch from you is great. As far as the allergy shots I think it is a good idea, especially after IVIG or PEX. My guess is Carter's immune system is on constant alert with all that he is exposed to...maybe that has something to do with why we wound up here. If we can get his immune system to calm down, maybe he won't over-react to strep if he is stronger. I have absolutely no data to base this on but it makes sense. He is miserable with his allergies so it may also help his quality of life. She was definitely ready to do IVIG again if needed. I will work towards getting her looped into the right people to guide her...Cunningham, Leckman, Latimer, Swedo, etc. Overall, i think getting an immunologist to investigate this makes sense since ultimately it is a disorder of the immune system.

 

Susan