HELP knowing what to do?!

[lakegirlz]

My daughter is 15 years old, she has always had a “low” IGG, her latest labs her IGG is 609 (751 is starting normal for this lab), last IGG level before these recent labs was in 2012 and it was 528. She also (back in 2005) had 3 of her 4 IGG subclasses low. However in 2005 all of her other labs– IGA, IGM, vaccine response, pneumococcal response, b & T cell functions– were all normal. She has had mycoplasma pneumonia (confirmed by labs) 4 times in the last year with persistent wheezing And multiple sinus infections. She did do sub q infusions for roughly 3 years with her last infusion Sept 2011. Her immunologist started her on infusions for lack of what else to do for her recurrent sinus and ear infections requiring rocephin, IV antibiotics and surgeries. I will say the infusions made a tremendous impact on the frequency and severity of her illnesses. My question is; is treatment necessary right now? I don’t understand enough to know if her other labs need to be repeated or if just a low IGG is enough or is her levels “low enough”? Is she “sick enough”?  Also, she is adamant that if she does need treatment that she is NOT doing sub q again-she says they burn/hurt too much. She says she will do IV. Anyone done both and have any insight??
Thanks for any help!!

[gillie]

For an number of years after diagnosis in 2002, I had ivig, then was encouraged to move to sub-cut. I had no trouble doing it, but for whatever reason, my trough levels dropped and dropped until my immunologist recommended that I should resume ivig. That's what still happens now. I go to the hospital every 2 weeks and this keeps my trough levels at an acceptable level. I wish you and your daughter good luck. Please keep posting with updates.

[s162216]

Hi lakegirlz, sorry to hear about your daughters current situation.

Can I just ask, why did she come off of having the IgG infusions? The reason I'm asking is that it works on the principle of continuous replacement to correct the bodies own natural deficiency of IgG, and it doesn't cause any inherent changes in the body (technically speaking IgG doesn't actually meet the definition of a drug because of this [as theres no site of action], but that's another story!) so you would expect the number of infections to go back up once she came off it as her IgG levels will drift back down.

The IgG levels are only really part of the decision making process as to whether IgG infusions will be prescribed or not. Some people have fantastically low IgG levels, but have an almost totally normal number of infections, responses to vaccine challenges etc and as so probably don't need the supplementary IgG. What is the opinion of your daughters doctor on this? Do they think she would benefit from the infusions?

I do IVIG currently (I'm a bit too lean in subcutaneous fat to do it subcutaneously!) and I don't find that it causes me any major problems. It is an advantage having to have it only every 3 weeks and I've just now adapted to going to have it done at my hospital. Tell her to not immediately dismiss SC though as it does have a good few advantages compared to IV (easier to do at home, more constant levels) and there is a new much more concentrated product on the market which means you only have to infuse every 2 - 3 weeks rather than weekly like with previous products.

Let us know how you and your daughter get on, and good luck!

Sam.

[lakegirlz]

Hi Sam,
Sorry it's been a bit.
My daughter never truly fit the actual diagnostic criteria for an immune deficiency, she has MILDLY low total IGG and 3 subclasses, however, she has a normal response to vaccines and all other immunoglobulins are normal. She had her first double ear infection at 7 weeks of age and it went on from there. She had chronic ear and sinus infections requiring antibiotics, rocephin injections, surgeries, a visit to Duke and finally her doctor said I have nothing else to offer except a "trial" of IG, so we did the SCIG for 3 years--which made a DRASTIC improvement in number of infections. Although her doctor was not completely convinced it was from IG and not simply "maturing immune system". We switched doctors at the end of her treatment. She has been off infusions since Sept 2011. She has had a slight increase in number of infections, however, the change has been that she has had mycoplasma pneumonia 4 times in last year (confirmed by lab test). She had OCCASIONAL wheezing before but now we can't seem to get her lungs clear. We redrew some of her labs (immunoglobulins in original post) and vaccine titers for Diphtheria, tetanus and Hib are all normal, however, pneumococcal titers are 10 out of 14 low and they drew a total complement level (CH50) and it was mildly low. We have an appointment with immunologist on 2/13/15. We see the ENT 2/9/15 and her primary doctor has already "warned" us she will mosst likely need to have sinus surgery again.
Just not sure what all this means??

[gillie]

Hi. I really hope for your daughter's sake that the immunologist looks at her past records and concludes from the evidence of the difference it made to her state of health while she was having replacement therapy that it would be a good thing to authorise it again now. It certainly sounds as though her state of health at the moment is cause for concern. Remember to take a list of questions you want answered when you go to the appointment. It's so helpful to have a reminder of all the things which come to you in the middle of the night, but which you suddenly can't recall when you're in the consulting room!
Best wishes,
Gillie.

[lakegirlz]

Gillie,
Thanks for your reply, I do have quite a list!!

Just looking to see if anyone else has had lab work similar to hers and the outcome???

[milkmanmike]

Hi, just reading through quickly, My own experience is now logged, I tried Subcut once and found too much irritation at the site, happily I've been self-infusing for nearly 25 years, with no side affects, I think your daughters biggest issue will be to overcome the self-canulation.. this is just mind over matter.