For Dr B patients

[Kiera]

Hi everyone,

I have a question for those who see Dr B. It seems from reading here that his protocol seems to be ivig every 8 weeks. I was just wondering is this how he does it with everyone or does he evaluate response before ordering next one? His protocol is in opposition to Dr K's who does not recommend frequent ivigs and says wait at least 3mts before re-evaluating. I know each of the specialists has their own protocols and viewpoints. Am also wondering how everyone is getting this many covered as I'm currently fighting ins. for the 1st ivig!! A separate question - I'm contemplating consulting Dr B in the future as I believe my ds needs a comprehensive immune system work-up and he seems like the best for this, my question, does he or would he order all the blood work ahead of time before consult to bring results with us, or does he do phone consults over the phone for follow-up to interpret results? Otherwise that means at least two cross-country flights to get his opinion, cha-ching, cha-ching, sigh!! Thanks for your responses.

[colleendonny]

He does not suggest IVIG right off the bat. I think he evaluates each child and their symptoms individually before talking about it. On your 1st appt you will go and talk amd blood work will be done. He will probably start abx.

We went a month later for a follow up to discuss lab work. Since you are across counyry, I'm guessing you could do a phone consult.

I would book an appt now even if you are unsure and cancel if you decide to. It will be at least 6 weeks out anyways. We have not discussed IVIG, but I have heard his office fight insurance hard for it. Also if your DS has immune problems, it may be an easier fight for you.

Good luck!

[JAG10]

Dr. B will give you a list of labs that you can have your child's local doctor order, but he won't write orders on a child he hasn't seen yet. We had the ped order the labs and I would recommend double checking those orders before going for the draw as at least 6 were "mis-ordered" as Peds are not familiar with some of them.

 

As far as protocol, my dd12 had IVIG done with both docs you mentioned. It's complicated because even with prophylactic abx, it's hard to keep these kids healthy, then the cycle starts over. When my dd had her first IVIG in Chicago, she was 75% improved, but by the 11th week post, August 2010, she was exposed to strep, then school started and it happened again. I knew she would need more, and I couldn't afford to pay another $12-15K again. So we switched to Dr B and he got her approved for IVIG for an entire year. To me, the beauty/benefit of every 8 weeks is that my girl was able to stay healthy even after infection, so she would not backslide so far. She had IVIG for an entire year and goes again in 3 weeks. I think we are finally ready to stop. She gets infections, but quickly gets back to baseline with the correct abx for the particular infection which lately has been both Myco p and strep.

 

Last year when I asked Dr B how would we know when we were done, he said when she gets an infection and responds typically sick with no behavioral changes. We are not there and honestly, I don't know when or if that will come. But I think we are ready to try and "manage" the condition with prompt abx and steroids if necessary.