yesterday's infusion and I met another Mom from here too

February 3, 2004

Hi, I don't get to post much as I am working hard on not neglecting

myself. I have been exercising a lot, eating healthier, and taking my

vitamins etc.

Ds had his infusion yesterday and the needle stick situation was

improved. Nov he got stuck 5 times and Dec it was 7 times.

Yesterday, the immunology nurse got right in on the saf but the blood

wouldn't flow. She tried going back in where she was but it wouldn't

go she just went to his neck. That is where we had to do it last

month.

I asked her what our specific immunology diagnosis was and she said

he really isn't CVID, or others but what they call functional

antibody deficiency (I think that is what she said).

His GI dr is sending us to Ohio (from FL) as soon as the appt time

can be set. He is even reacting to apples now and that was the only

food he could eat.

We did meet another member from here but I don't know her online

name. Her son is and I think her name is Caroline. They are

from the panhandle and were so nice.

We have a new infusion room at Shands at Univ of FL. It is great b/c

the kids have lots of games, toys, playstations, etc to keep them

busy during infusions.

One bad news is that my 3 1/2 yo has been battling a rash on her bum

for over 6 months. Our general ped had been treating it as

fungal/yeast but now he is treating it for impetigo. He prescribed

augmentin as she also had a sinus infection (she had some immunology

problems when she was a baby but responded in time to prevent IVIG

infusions, thank goodness). I have some bactroban and phisohex from

when ds had MRSA so I am using it too.

That is all for now.

- food allergy and asthma

dd- 3 1/2yo chronic sinus infections

ds- 23 months MFA (MFPI), severe GP, GERD, EC, esophogitis, IgG

immune deficiency, asthma, chronic ear infections. Survived last year

from MRSA and c-diff on seperate occasions. On erythromycin 3times a

day for the GP, Neocate 1+, Prevacid granules, Zantac, Flovent 44 and

Nasonex. IVIG (replacement therapy of immunoglobins and antibodies)

every 4 weeks. And..... yellow jackets. Ugh

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