Does YOUR immunologist think it's necessary

[Phasmid]

Hate to beat a dead horse, did your immunologist say he/she would advise treating with regular IVIG if your child has poor response to pneumococcal bacteria? I don't know if most say that kids SHOULD be treated, or not. Do they think it contributes to the PANDAS problem?

 

Thanks!

[kimballot]

Hate to beat a dead horse, did your immunologist say he/she would advise treating with regular IVIG if your child has poor response to pneumococcal bacteria? I don't know if most say that kids SHOULD be treated, or not. Do they think it contributes to the PANDAS problem?

 

Thanks!

 

Ok... not to beat a dead horse...

 

Dr. B likes to treat with IVIG.

 

I have an allergist (who does not practice immunology as a specialty) who told me my son could get a pneumovax every year instead of IVIG and that may help to elevate his titers enough to stop sinus infections (he's already had 2 and they did nothing to help him clinically - even in the brief time that the titers were elevated- chronic sinusitis).

 

My son's ENT looked at his low pneumococcal titers last year (before she knew anything about PANDAS) and said "get your son to an immunologist... I think he needs IVIG. I have children and adults with pneumococcal titers at this level who get IVIG". That was when we called Dr. B.

[Phasmid]

REALLY!?

 

Wow. So hard to know who to LISTEN TO!!! One doc says nothing to worry about, and other doc acts like my kid is lucky to be alive!!

 

Thanks!!

 

So..... are the sinus infections under control post IVIG for your child??

 

 

[peglem]

Hate to beat a dead horse, did your immunologist say he/she would advise treating with regular IVIG if your child has poor response to pneumococcal bacteria? I don't know if most say that kids SHOULD be treated, or not. Do they think it contributes to the PANDAS problem?

 

Thanks!

I have a long story about this.

When my daughter was 12ish, she was sent to an immunologist because we (her pediatrician and I) wanted to investigate why she just couldn't shake the strep (only behavioral symptoms). The immuno did the 23 valent pneumococcal vaccine test (after drawing baseline levels). She did not have a 2 fold titer rise in any of the 23 strains. So, he ran them again after another vaccine...and this time she did have a rise of titers. His nurse called me back with the results and said that this had "jump started" her immune system and she should have a lot less trouble with strep now. I think this test is an indication of how well the immune system responds to bacterial challenge. Anyway, when she did have more (the same) troubles with strep after that, she was pronounced a "carrier", the implication being that she wasn't actually having problems from strep. Thank God the pediatrician still thought there was a problem, because I was ready to give up after that.

About 2&1/2 years after that, we ran a Cunningham test, which gave my pediatrician the impetus to try again with the immunologist. True, they don't really know the significance of the test, but after he talked with Dr.s Cunningham and Latimer, he was convinced that it was at least evidence that something was awry and we should try to figure out more. So back we trotted to the immunologist....w/ labs indicating low total IgG, very low IgG4, extremely low IgA....and the immuno still said it wasn't a true deficiency. He ran the pneumo titers again and they were low again (after the 2 vaccines 2&1/2 years previous). He wanted to try the vaccine test again, (sigh) but I refused. We were seeing the rheumatologist at the same time and trying to get them working together. The rheumy said he was not qualified to dx or treat so referred us to Dr.L. The pediatrician kept working on the immuno (I think they are buds) and finally he agreed that if Dr.L recommended he would do IVIG. So off we flew from Phoenix to Maryland (one of the toughest trips of my life). Dr.L looked at her labs and her Cunningham test and said, "Why aren't they treating her immune deficiency?" Her report basically said, "The humane thing to do (she actually used that word, like scolding them for ignoring Allie's medical problem) is to treat this child's medical problems just like you would any other child's." So, we've got IVIG every 3-4 weeks, I think based on immune deficiency, but I'm not sure if that's the basis, because we are getting the autoimmune dose. Anyway, its been decided that as long as its helping and insurance cooperates, we'll continue. And this immunologist is the only specialist out their who is currently working with the pediatrician as far as treatment planning. (The rheumatologist has completely washed his hands of us and if anyone confers with him he says you can't base medical treatment on behavioral symptoms. What a JERK!)

 

So, I guess the answer to your question,

did your immunologist say he/she would advise treating with regular IVIG if your child has poor response to pneumococcal bacteria?

is sort of, with a lot of arm twisting!