HELP!!! Ursula anybody............

January 5, 2008

My name is Jerri and I am a long time mostly lurker here. We are from Atlanta.

My dd is 14y.o. She was diagnosed with Selective Antibody Deficiency

at the age of 6 by Dr. here at Egleston. She does not make

antibodies to streptococcal pneumonia. Had 6 infections with pneumonia in 2

years. Prior had constant ear infections and asthma issues. She went on IVIG

for 6 years until she was about 11. Had not breakthrough infections at all

during this time. Towards the end of 5th grade Dr. wanted to try her

on prophylactic antibiotic therapy and come off of the IVIG. We went on 500mg

of Amoxicillin 2x dy. We have been doing this for close to 3 years now. She

had no breakthrough infections. sees a dermatologist for acne and he

put her on Doryx a tetracylcine antiobiotic on November 30 of this year. We saw

Dr. a few days later. He pondered it and then checked with somebody in

pharmacy area at Emory/Egleston and decided that the Doryx should cover her for

the immune system deficiency as well as the

acne. He took her off of the Amoxicillin .

So all she has been on for the last month is the Doryx and Advair. On Xmas

day she started with a little cough no biggie though. We left for ton,SC

on 12/30. On 1/2 she started running a high fever, saying it hurt to breath

some onthe left side. We rushed her to MUSC in ton. The final diagnosis

was streptococcal pneumonia. She got Rocephin 2000mg through IV and breathing

treatments with Xopenex. We caught it in time thank goodness and she was only

there 2 nights. They send her home on Augmentin and with a breathing exerciser

thing to help get the stuff out of her lungs. And breathing treatments of

course.

We got an appt not with Dr. but with his associate Dr. Demuth for

Wed. The people at MUSC didnot seem to impressed with his decision to use Doryx

as a prophylactic antibiotic. I am wondering now of course myself about that.

Also, what the next course of action should be.. PHillips at one time

said,(this was before the whole Doryx thing) that if she had a breakthrough

infection on the prophlactic antibiotic that she would have to go back on IVIG.

Well, her veins are shot from the years of monthly IV " S. She never had a port,

though it was discussed. I am wondering if she should go back on Amoxcillin and

see what happens. Or if they will want to do IVIG this time with a port. She

had done so well on the Amoxcillin. Any ideas or suggestions???????????

Does anyone know anything about Dr. Demuth?

Thanks,

Jerri

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