IVIG Providers, Immunos & Peds

[thenmama]

Hi all,

 

Even though our treatment plan is hovering midair right now-- waiting to either crash or fly... I said I'd look into possible agencies for the IVIG so if things come together we know where to look. We'd prefer not to use Critical Care, which handled our dd's IVIG (badly). So, we're looking for another home health agency or facility or something-- that can get the Gamunex and do HDIVIG. We're also willing/interested in other immunologists that would be in network that are able to work with PANDAS docs and/or do IVIG for PANDAS kids with immune deficiencies.

 

Also, depending on how things play out, we may need to look at other PANDAS-friendly peds in the Richmond area. So, figured I might as well ask about it all at once...

 

 

TIA!

[PowPow]

Coram did home health Gammunex for us- ordered by our PANDAS doc.

No ideas on doctors, sorry!

[browneyesmom]

I can't speak for Richmond as from what I understand, people in that area are having trouble finding local help, but try CHKD in Norfolk. There is a new Neuro-Immunologist there with an interest in PANDAS. They definitely run Gammunex IVIG there; it's where my daughter had her first high dose inpatient & that's what she got. The Neuro-Immuno offered to order it for her again recently.

 

I think I lost your email when my computer crashed, but it might be in my cell. Feel free to email or call me if you need a name and phone number.

 

I'd be interested to know more about your experience with Critical Care as that is who we have now. I'm also considering switching to CHKD or Georgetown... I'll know more after our next appt with Dr. L.

[browneyesmom]

Just wanted to add that the immune deficiency is what we discussed recently as my daughter has one and that is when the Neuro-Immuno at CHKD offered to order it for her and monitor her as we determine how many she needs. I anticipate we may have to go to long term low dose once she is stable, but I'm not sure it is advisable to do the low dose (even after stable on high dose)... I need more input on that one.