Good News and Bad

[Guest guest]

Well, the good news is that we finally got the labs. Bad news: neither of the

girls responded at all to the recent pneumovax. They have now had 4 pneumovax

and one prevnar and have never responded nor do they have protective titers on

Ig replacement. Additional, they have not responded to DPT and have no

protective titers to pertussis or to polio. Additionally, their auto-immune

markers are extremely elevated and they are very concerned about this. They are

recomending starting back on azithromyocin prophylaxis because their sinus scans

also came back showing chronic pan-sinusitus (always has). This does not act as

an antibiotic anymore...but is used as an anti-inflammatory. This is all in

addition to poor T cell proliferation and low WBC and neutrophil counts as well

as IgG2 and 4 subclass disorders.

Now the recommendation is to vaccinate them again. I think you could vaccinate

them from now til the cows come home and they will not respond, and at some

point enough is enough. They just had a pneumovax 8 weeks ago and did not

respond. It seems that 5 pneumo vaccinations in 4 years with no titer responses

is pretty compelling? At some point, I really worry that all the vaccinations

in a kid that cannot respond to them might actually cause more problems. Still

no recommendatio to re-start Ig replacement. Both girls are sick....Molly is

getting sick on top of already being sick...never clearing the last infection

before getting another. Now, Maggie was brushing her teeth last night and had

her tongue hanging out and the top of her tongue is completely raw.

We see a new, local pulmonologist tomorrow and I would love to have some idea of

where we should be going with this now.

Terri