New Member - Sally

Posted June 25, 2001 · June 25, 2001

Sally - welcome to the list. There are one or two families from the Augusta

area on the list. Hopefully they can help

you. There was a pediatrician in ton who is actually a CVID patient

herself. Have you heard of Patrice

Turbeville? The last name may not be spelled quite right. She may be

associated with the Medical University or she

might be in a private practice. She might help you find a more local doc or be

a good source of information. What led

to your son being tested? How often is he getting infused? My daughter had a

port for a year and lost it to infection.

She has been able to stop IVIG and thankfully another port won't be needed.

Please feel free to ask any questions or

make any comments. You can catch up on recent and old emails through the

archives

Ursula Holleman

Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux,

Sensory Integration Disorder, Diabetes

Insipidus)

Re: File - PedPIDemaillist.txt

Hi, My name is Sally and I have a son that is 3 1/2 that has CVID. He was

first diagnosed in Oct of 1999. He has been getting IVIG infusions since Jan

of this year and has been fairly well on it. He has been in the hospital 15

times with about 10 phenonia and tubes put in ears 3 times, 3 sinus

surgeries, and 1 bone marrow biopsy. He had a port placed in Jan to help

with the infusions. He used to get a sinus infection about every other week

or ear infection before he started on the infusions.

I live in ton, SC and there is not a doctor he that specializes in

this so we have to go to Augusta, GA to get his infusions and to see a

gastonerolgist with his stomach problems. He has constant stomach cramps and

diareaha.

I am looking forward to meeting other people who has children in the same

situation that I am in. I would like to share stories.

Thanks for responding back to my request to join your group.

Blessings

Sally

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