Update on Dr. B visit today

[becjonz]

So we had our first Dr.B. appointment today and it was very interesting to see a very different approach than what we have been dealing with. I have always counted ourselves to be lucky to have dr. close by who was knowledgeable about PANDAS, had a long history with it and didn't debate it's exisence. Now since she is retiring we had to seek out a new specialist. I chose Dr. B. due to recommendations on here and again we are lucky that he is only 2 hours away. Little did I know that seeing him would be a complete paradigm shift in how we deal with PANDAS. If all recommendations and treatments work out it leaves me with lots of hope for ds's future.

So in the past DS was on low dose Penn VK prophylaxis. I also had to be on guard to watch for exacerbations, not always getting the cooperation from the dr.s or school that would help with that. If I noted a flare, I'd call the dr. get blood work, wait a week+ for results, then he'd go on different meds to knock infection down (hopefully). This was approx. a 2 month cycle and always in there he'd lose instruction in school, disrupt his brother's life due to issues of his own and impact his social and emotional health.

So now Dr. B has proposed this crazy idea of treating DS's immune response so that we calm it down and solve the problem rather than react to symptoms so that DS won't have exacerbations! I never thought this was an option!

So he is off Penn VK, off the 10 day course of Amox (he was on day 8 and infection was still active. I knew it wasn't and had treated him myself with ibuprofen- the one thing that has showed results) Instead he is on omnicef, a 15 day course of Prednisone, Nasonex, nasal saline, and mucinex. He said this should take a month to get him in good shape.

He has also ordered a ton of blood work. (7 vials of blood to ds' dismay) and has also requested that we have the Cunningham test done too.

 

He also said that issues we are seeing with younger son could be early PANDAS (some smart person on this board called that weeks ago) and that he is much more susceptible to having PANDAS due to older brother with it.

 

I'm eager for appt. in a month to hear about blood work and future steps.

 

Kara- it was nice to meet you today. I hope things look up for your guy soon.

 

I'm not sure if the other person I met from Waterford, CT is on here but if so it was nice to meet you too. We live so close, nice to see others from nearby.

 

~Becky

[SSS]

I'm happy for you Becky, the hope and having a plan is wonderful :-)

[kferricks]

That is great news. Did you ask him about the the Cunningham test ? Or did he bring it up? just curious.

[becjonz]

That is great news. Did you ask him about the the Cunningham test ? Or did he bring it up? just curious.

 

I had it on my list to ask but he brought it up first.

 

(and now to find the money for it...

[browneyesmom]

Great news, Becky; so glad it went well for you and your son! We leave in the am for IVIG infusions on Weds & Thurs.

[momofgirls]

So glad you had a good appointment with Dr. B. Did Dr. B suggest testing for lyme? In my opinion, this should be done first.