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My son has an appt. with Dr. B. tomorrow. DS's PANDAS is mild compared to others I've seen on here. He has tics, anxiety, ADHD, confusion and irritable during a flare up. I'm just wondering if all patients get the recommendation of IVIG with Dr. B. If ds is mild and I have reservations about IVIG if it is not absolutely necessary I just want to know what I'm facing so I have a response ready.

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My experience is that Dr. B really looks at the immune system and goes from there. In our case, my son had immune deficiencies and Dr. B did recommend IVIG, but he told us that he would not consider IVIG until the infections were cleared and allergies were treated. His words at our first visit were "we have a lot of work to do before we start talking about IVIG". He has been very helpful for us to control sinusitis using singulair, azith, omnicef (trades off with azith), and prednisone during flare ups. He also has us using other things like mucinex and rhinacort. Basically, he is treating my son's sinus disease and immune disorder. The only difference between him and any other really god immunologist, for us, is that he recognizes and respects my son's PANDAS symptoms as a signal that there is an infection or inflammation somewhere and he looks for the root problem.

 

Good luck tomorrow!

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Hi Becjonz,

 

We have an appointment for my dd8 and dd11 first thing tomorrow with Dr. B. My dd8 has been seeing him since last June. He did not recommend IVIG for her. She had been doing well on abx so he said we would just stick with that unless things changed. Well, unfortunately, things started changing in Nov/Dec and we are in a pretty tough place right now. We'll see what he says tomorrow. It will be my son's first appointmnet. We (Dr. B and I) are wondering whether my son's recent strep infections are what is causing her problems...

 

What time will you be there?

 

Kara

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It depends on many factors, such as whether he's been on abx previously, how long, which one, what strength, etc., and how he's done on the abx. I don't think Dr. B would go "out of the gate" with IVIG unless that was the next logical course of treatment, and it was warranted. In our case, when we first went to him, he switched our abx and then six months later recommended IVIG based on where we were at the time. At that point my son had been on abx for a full year.

 

And don't forget, he will present you with his medical opinion and his recommendation... you don't have to do any treatment you are not comfortable with.

 

Good luck tomorrow!

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Kara we will be there at 11:00 tomorrow. I'm interested to hear what happens in regards to your son. I plan on asking him if as a family we should be tested. His father has frequent strep infections and his brother has psoriasis which can be caused by strep.

I'm glad also to hear about your IVIG experience but am sorry for you and your dd that things have worsened. I hope he can find a solution for her. I am hesitant about IVIG but am glad to be going to someone who does look at different options for treating PANDAS. Our present dr. is great (she is retiring so that is why I'm finding a new dr.) but if things got worse I'd like to know the dr. would offer more than just abx.

 

Good luck tomorrow!

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