RE: Just want to re-introduce myself

June 28, 2004

Hi, Grace,

I'm Pam, mom to 4. Our 3rd child is PID. She is now 4.5 years old but

misses the birthday cut off by two days. I'm thrilled. The whole school

thing is put off a year. We homeschool and intend to homeschool her. If

your doctor feels that it would be better to stabilize Zachary's health

before he starts to school, please don't feel hesitant to try homeschooling.

I've done K twice now and will start Rebekah in January. Doing K at home is

really straightforward. You read extra books to him each day, count lots of

objects, start work on letter and vowels sounds, start working on letter

formation, and try some simple addition.

Rebekah was on 10 grams of IVIG. She perked up but would really fade off

the last week of here 3 week cycle. The doctor boosted her to 12.5 grams

(reluctantly, I might add) and WOW what a difference. Now, we honestly

can't tell when her treatment is due. I have to check the calendar to see

when the next treatment is! LOL I never thought that would happen.

I'm sorry about your awful experience with the TB test but it's good that

you've found a set of peds that are better at more complicated ped cases.

As far as the school system goes, the business about the IEP doesn't sound

right. It sounds like you might have to make a few more phone calls and

rattle some cages to get appropriate accommodations made starting one DAY

ONE rather than waiting for a health crisis.

Pam

wife to (17 years)

mother to , 10, Hannah, 8, Rebekah, 4, and Leah, 2

Just want to re-introduce myself

His new immunologist feels that we need to

optimize Zach's IVIG since you can see the obvious difference in him

when it comes to about a week before he is due for his IVIG. She

wants to up his dosage, and see if he needs it closer in weeks.She

feels it might take longer then what we have before school starts

(here in Florida we start early Aug). I feel very fearful to send

him to school. The school seems very hesistant to help us with any

issues. I asked when I went for my 6yr olds IEP meeting about

setting up a IEP for Zachary and was told I couldn't even start

anything until I enroll him.

June 28, 2004

Hi Pam,

here, I just saw your post and had a question. started IVIG in May

for what now is CVID( was Sel IgA def), she does quite well the first three

weeks but boy can you tell when the third week is here, and she's had only two

treatments. The first time three weeks out she ran a low grade fever for 4 days.

This time, she is due the 7th, she is now feeling terrible, cough, bringing up

dark green sputum, sneezing, headache into her eyes, nose congestion, sore

throat, fever, so to the peds we go tomorrow. She is on 10 gms of Polygam 10%

every 28 days, I wonder if we should wait it out or try to increase the dose for

longer efficacy?? I know we are not Dr's but advise is always great.

I hope you all have been well, for some reason my account had been held up

and I haven't gotten any messages in a few weeks.

mom to - CVID, asthma, gerd