Re: Charlie's IVIG, and I met Amy Hand

February 3, 2004

from Dale, Mom to Katy, CVID, age 19

Dayna, don't " plan " on a headache. I would let him go to preschool and

get on with life. But I would let the workers there know to be on the

lookout. I was so worried about Katy those first few times. When she

would get the headache -- it would be right before the end of the IV (if

it was from running it too fast) or sometimes that night just before

bed. Sometimes she felt dizzy (so if she was doing dance class or

theatre, I would sit and watch just to be safe). And if she was already

into an infection, she would feel flu-like as the IgG began doing it's

thing. Early on she was getting severe severe headaches that were

worse than migraines, and we decided to change brands -- that settled it

for her. Different brands have different pH, different chemical washes,

etc. So, it's always worth a change if there is severe headaches not

related to infusion speed.

I'm so glad it went well, I'm sorry he has do it again so soon -- but,

in the long run, it may help him to adjust. Remember to hydrate him

well before they start looking for veins -- water, water, water (no

caffeine). Also, some of the nurses for Katy would use a hot pack on

her arm to get the veins to come to the surface. That also helps.

Congratulations Mom, you made it!

In His service,

Dale

February 3, 2004

Dale,

Thanks for the advice, I did end up letting him go to school, trying as much as

possible to stick to his normal routein. He did great at school and has not

complained once of a headache. The nurse where he was infused told me they run

it VERY slow compared to most places, which she said will usually cut down on

the reactions/headaches. Both and I are kicking ourselves about hydrating

him before the IVIG, we should have thought of that, but will be doing it next

week! They actually did the hot packs on his hands when they couldn't get the

veins on his arms, actually, I should say, they got them, but they would blow

pretty quickly, my DH is a flight medic, so he was able to monitor what they

were doing pretty well, he told me Charlie's veins roll - which means nothing to

me, but he said mine do the same thing (yes, I've let him practice on me

multipole times, and in fact, when on home IV therapy while pregnant with

Charlie, he was almost always the one who stuck me!

I have to say, overall, I feel like IVIG has been really positive for us, no

reactions, he's doing well, talking and role playing - A LOT - did I mention we

bought him a " emergency medical cart: which comes with a little fake IV and

everything? He's been role playing for us and telling us all about his

experience. I keep reminding him he is going back next week, but somehow he's

translated it to him going back tomorrow, and actually got mad at me when I told

him he wasn't going until Monday - he said the medicine is " Going to make him

fell all better. " On a less posititive note, I took Kate to the doctor today,

she has croup - not exactly where I wanted her to be! I'm sure she'll react

well to the meds, she always does!

Thanks again, oh, and I can't remember who it is who is feeling down about not

getting replies, but I did want to say that I'm sorry that your feeling down

about it, and I hope you will understand if I say that I've been so wrapped up

in Charlie's issues that I feel like I have not been able to breath, I'm sorry I

have not made more of an effort to support you.

Dayna