Still don't know what to do... HELP!

[matis_mom]

mati'smom,

just curious if you have been able to talk with Dr. L. about this, or are you waitng to do so? When I was on the fence about doing the month long steroid, I wrote her an e-mail with no replay and re-sent it 4 days later, again with no reply. I've held off on the steroid for now.

 

I don't understand about 'underlying lymes'.? have you had testing for lyme? if he's been tested and its negative, I'm not sure why the naturo would suspect he has it.

 

Faith

Faith,

Sorry I never answered your question. The naturo suspects Lymes based on his systoms. I was reading through a list of Lymes symptoms and it is amazing how many of them coincide with PANDAS, especially if the child also has RF/RA (which my son does, lots of joint swelling and some joint pain). She also thinks because of the high strep, it could be the Lyme is just kind of latent right now. Lyme Disease is what she treats mostly, so maybe she is just seeing Lyme where there is none. But I have to give her credit because she picked up the strep/Pandas thing on the first visit just from taking ds history and doing an examination.

Now we have further confirmation because we got our Cunningham results back (CamK 168), so I figure with such a clear and confirmed PANDAS diagnosis, we need to move ahead and address that. Yes, we could be unlucky enough to have Lyme too, but the antibiotics will be addressing both.

In any case Dr. Latimer gave us the green light, and we started steroids, so far so good.

About contacting her, I called Monday, spoke with the nurse. Sent an email on Tuesday. Called back Wednesday morning, referred to the email, the nurse pulled out the chart and passed it on to Dr. Latimer, and she emailed me by noon.

 

I'll keep you all posted on how he does with the steroids. Thanks to all for the input and especially for the warning that we might see a flare up but if we stick with it we will see good results. He had dark circles under his eyes yesterday... I think I remember things being mentioned by other parents. It is just so helpful to know what to expect.

 

Happy Thanksgiving!

 

Isabel