Howdy

[Guest guest]

After Macey was diagnosed we had (also tested for CF, pneumonia's, ear

tubes, bronchitis and GI problems) tested. Her system was excellent. Now

at 6 yrs old we can look back and see that she was just a sickly toddler.

She still has some GI complaints but she probably gets that from me. Both

small framed and have h.pylori. My immune system was also wonderful except

for the C4 complement. Deficient. My Internist wanted me to have it

retested but honestly I never got around to it and now he's no longer my

doc. I don't have any record of Macey's complements being tested. She's

had the CD4, CD8, CD16 and CD56 from what I can tell on her records. also a

test for CH50 (?). I will write Dr. Harville and ask if he knows if these

tests were run.

Helen - nice to hear that Matt is feeling better.

- before Macey was born we went to SanDestin and Okaloosa Island

each year, usually 2-3 times. My father also had a major account acouple of

years ago in Ft. Walton so they had a condo in town. So we went there some

too. It's a wonderful place. Maybe this summer we get together. We're

alittle hesitant about Macey going on the beach, alot of nasties usually and

then the sand could also give her a UTI. We haven't been but once since she

was born and that was a disaster because her asthma flared and we spent most

of the time in the apartment with the nebulizer. We're about 5 hrs from the

beach. We go down through Albany and then through Dothan and on down. We

have family in Dothan so we usually split the trip. Long hauls are hard on

Macey's legs and she tends to get sick when we do long car rides. Do you

have computer access at the beachhouse or will you just catch up when you

get back? Have a safe trip.

Autumn - Dr. Harville was doing SED rates and CRP tests every so often to

watch for spikes that might indicate an autoimmune problem. We've decided

here with the new ped to do them every 3 months unless she shows further

symptoms. Her hands get knotty at times and are hard to open and close.

Then her legs and arms will ache every now and then and get warm to the

touch but the rest of her is cool and feels fine. I'm not sure if they'll

repeat the autoimmune panel he did every year or so or what. Her OT does

alot with loosening her hands and the brushing technique we use for her

sensory training helps with the sensation problem. I know that when we

first started seeing Dr. Harville he drew a ton of blood and ran a ton of

tests, treated what he found and is watching numbers that were borderline or

questionable. I need to get her lab copies from him, he's the only one I've

never thought of keeping an eye on. I have all the others.

Anne - good luck with Sam's testing. I hope everything goes well. Let us

know what you find out.

- 's mom - they are wonderful letters and I am very grateful

for them. The IEP meeting went well and we will meet again to firm all

contracts up at the start of the school year. Good luck with 's trip.

Sue - M & M's mom - so glad to hear that MacKenzie is feeling better,

hopefully the worst is over. We also have another mom named Sue on the

list, & 's mom, so I'm trying to figure out a way to

distinguish the two. Hope M & M wasn't too tacky.

I - how is Mark? Are you headed for Duke anytime soon? Hopefully his

weight is maintaining.

well off to laundry land.

Ursula Holleman

Macey's mom (4 yr. old with CVID, asthma, GERD, sinus disease, grade I left

kidney reflux, Sensory Integration Disorder)

ICQ # 28592349

http://www.icq.com

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