Re: Thank you for allowing me to join.

August 13, 2006

Crystal - welcome. Does he receive 26 gms every week or split up over the

course of a month? His history is in line with many of the members on this

list. Our own daughter lost several lines and a port to sepsis and has the lung

and GI issues to deal with.

Unfortunately with t-cell problems onboard IgG replacement won't do anything for

that. Do they have him on a daily antibiotic? What part of the country are you

from and what Immunologist do you see?

Which t-cell function studies have they done? Is there any history of PID in

either family?

Ursula - mom to (13) and Macey (11, CVID)

August 13, 2006

Hi Crystal, I'm new here too. We are still undiagnosed and untreated.

We are FRUSTRATED with the process. My 8 yr old has autism, so I know

those struggles as well. My PID kid is 18 months old. He's complicated

like your Gage is. He has lymphangioma/cystic hygroma, plagiocephaly,

torticollis, seizures, limb length discrepancy, pica, anemia, vision

delays, hearing issues, speech delays, general delays, brisk reflexes,

ankle clonus, eczema, and I'm SURE I'm forgetting things. He hasn't

had a pic line or port, but has had frequent bouts of sepsis, had

group A beta-hemolytic streptoccocol meningitis (which they *knew* was

going to kill him, and it did leave him comatose for days but he

survived), has had pseudomonas, staph, scarlet fever, klebsiella

oxytocca UTI, kidney infection, cellulitis, strep throat 8+ times, 12+

ear infections, bronchiolitis a few times, rsv, croup, bronchitis, etc

etc etc. We know all the nurses at our hospital, and they all know him.

Just wanted you to know you're in the right place.

Kimmi, mom to Connor 8, Skye 7, Trew 3, and Lochlan (medically

complicated) 1.5yrs

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