Been away for a long time, but now back

October 5, 2010

Hi,

I remember many of you from way back when I was posting here regularly. My two

kids (now have 3) had immune deficiency. Our daughter outgrew hers and is now

the healthiest kid ever. My 11 year old son has not outgrown his and has just

finished yet another round of testing (13 vials of blood...ick!). I shouldn't be

surprised because nothing was new and different, but it was still a blow that he

hasn't outgrown anything.

We went back for more testing this time because he continues to have chronic

sinus infections, fatigue, chronic hives and now is falling off his growth

curve. He has lost 8 lbs in a year and barely grew a 1/2 " during that time. We

have run his immunoglobulins over the years and they have continued to be

showing low IgG and low IgM. Today we got the same results as in the past. Low

IgG, low IgM, only 2 subtypes of pneumococcal antibodies that were right at 1,

the rest either 0 or barely above. No T-cell mitogen response to Candida and

very low to ConA. Very low diptheria antibodies and I know I'm forgetting one

other thing. Anyway, he has had many pneumovax and Prevnar in the past and will

respond partially, but then never keeps the levels. He was on IVIG from age 2-3,

then we took him off and he was isolated and did well. Now he is back in school

and has been on prophylactic antibiotics, but turns out all these symptoms were

chronic infection and he was flying under the radar without major symptoms, but

enough to affect his growth and how he feels every day. We are just finishing 21

days of Augmentin for sinus infection and he finally started to eat more and

feels pretty well. Now we are cycling back off tomorrow and as usual the

symptoms will probably be back in about a week (hope not!!).

The doctor said he will treat with 21-30 days each infection and if he continues

to need that we may need to consider putting him back on IVIG again. Ugh. I hate

the thought, but I don't want him to feel crappy all the time either. He is

always tired, but rarely can sleep and now he's not growing. So we may have to

go that route.

Anyway, I've been out of the loop for so long that I don't even know what's new

in treatments etc. or what all of this really means at this point. It's not new

info, but at the same time feels a bit new again.

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