Update & Welcome New members!

Posted November 1, 2008 · November 1, 2008

I have been MIA for a while…we’ve had a lot going on. I can’t even remember

the last time I emailed you guys! I have not been able to keep up with the

emails…but will try to do better! I have two boys with Shwachman-Diamond

Syndrome who also have IgG issues. They received IVIG for 3 ½ years before

we switched to SCIG. You can *meet* my family on our family website:

pictures of IVIG and SCIG, etc on our site.

Our ph also has a neurogenic bladder, so we have been dealing with that,

as well. He had neurosurgery 2 years ago to release his tethered spinal

cord (tight filum terminale) and it helped improve his bladder function a

bit. He doesn’t respond to medications, so we went to CHOP (Philly) this

summer to see what they had to offer (we’ve been all over!) -- we went back

in September for him to have a new procedure done. It had shown to be very

successful in patients like ph…unfortunately, we have not seen any

results. The Duke doc and the CHOP doc have been communicating, so we are

lucky in that respect. We are doing another medication trial in hopes that

the procedure actually helped enough to let the meds work…but so far….no

success.

ph has had 12 bouts of cellulitis in his life…. 2 this past summer---

one from a splinter that left nothing behind and a patch of eczema that

developed cellulitis.

Other than that, I think we are all doing okay. I have been in touch with a

few of you through Facebook. I really like Facebook! Such an easy way to

keep in touch and keep up with friends! I like being able to look on the

*home* page and see what is going on in everyone’s life…. saying prayers

when needed, etc.

Sorry for not keeping up with the list! I do think about you guys

often….but you know how crazy life can get with PID kids!

Peace be with you,

Pattie

Perfect love means putting up with other peoples shortcomings, feeling no

surprise at their weakness, finding encouragement even in the slightest

evidence of good qualities in them. ~ St. Therese of Lisieux

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