See Dr. B for hdIVIG when already on low dose IG with another immunolo

[cynditk]

Hi all,

 

 

Thanks for your feedback from last post. We have an apt to see Dr.B in late August. My son has been treated for immune deficiency by Dr.Gupta at UCI for 2 years, which for him consists of low dose SCIG weekly. Dr.Gupta is not up to speed on PANDAS or Lyme. IG therapy has helped him immensely, and after 2 years he developed what we thought was PANDAS but may be more complicated than that. Dr.Gupta did not do a typical assessment for immune deficiency because he does not like to vaccinate kids to test them who have previously had bad reactions to vaccines, which my son has. My son was diagnosed using his IgG subclass deficiencies and clinical presentation.

 

So, we are considering the high dose IVIG protocol, but my son will not be able to go through the usual testing protocol because he is already on IG therapy. I am concerned that Dr.B will not know what to do with us since we can't go the "usual route" with testing, and also all the titre testing they like to do will not be accurate. We are in Seattle, is it worth it for us to go all the way to CE for a second opinion? I am nervous about dragging my son on this long trip and having it not be fruitful.

 

Any thoughts, anyone been in a similar situation?

[LNN]

What is your goal in seeing Dr B? Is it to do HD IVIG with him? Have him consult with someone on the west coast to coordinate HD IVIG closer to home?

 

I think if your hope is to have a second opinion, someone who would get on the phone with another doctor and support HD IVIG, perhaps provide protocol guidelines, then the trip would be fruitful. If it is to get HD IVIG thru his office, the trip would also probably be productive, but would require multiple cross-country trips, as he generally recommends IVIG every 8 weeks. I don't have the sense that your son's current IVIG situation would prevent Dr B from being able to help you. I suspect he's dealt with other patients with a similar history where traditional blood work couldn't be done due to previous infusions.

 

So I guess the answer about whether the trip would be "worth it" depends on your goals. If the inability to do certain testing is your concern, I suspect he'd be able to work around that. Your other option would be to schedule a paid phone consult with him where you could review your situation prior to traveling.