Re: SubQ need advice, help,Major!

December 2, 2010

hi Sue you can call me or email me off list. I have a son with Bipolar and have

had HORRIBLE time working with getting him to cooperate with Infusions. I may

have some ideas working with you.

BARBIE

________________________________

From: NOLA mom <sudubo@...>

Sent: Thu, December 2, 2010 1:22:16 PM

Subject: SubQ need advice, help,Major!

Hi ya'll, My son has been getting IVIG for a while now. He has CVID, Chronic

Neutropenia, Kearns-Sayre Syndrome, he has a feeding tube and a mediport...he

will be getting a Pacemaker in 3 weeks. He needs a wheelchair about 50% of the

time. He has chronic pain form a spinal cord syrinx...and he has

Ophthalmoplegia, some paralysis of his eye muscles, part of the mitochondrial

disorder...it is progressive and is affecting his vision and this is so

upsetting, his books are like his best friends.

e also has Asperger's syndrome. If routine is thrown off, well, things

don't go well! Those of you with kids on the spectrum totally get it!

For example, two weeks ago when going to the clinic to get his IVIG, someone

else was in " his " recliner.and the internet wasn't working..he freaked out and

melted down..almost couldn't do the IVIG!

well, since e is getting a Pacemaker in a couple of weeks, the

electrophysiologist cardiologist said he will be at increased risk of infection

to the heart muscle every time the port is accessed (every 14 days now with the

IVIG)

Using the Subq will reduce some of this risk, so we have decided that's what we

need to do. e has a history of sepsis and also he has low white blood cell

counts and neutropenia, ...so this is a no-brainer to switch, in order to reduce

the risks.

However...with his autism spectrum challenges and his routines, and he is very

difficult to deal with in these things a lot....I am so worried about the

Change! Plus he is real skinny and I am concerned about this with the subq.

(He receives Granulocyte-Colony-Stimulating Factor injections every Mon-Wed-Fri

and has been for years now, and we still need to chase him sometimes!)

I so much need your help!!!! I need ideas, guidance, advice....help!! If

anybody deals with an ASD kid and Subq or if you just can give me whatever ideas

might help....please I would very much appreciate these!!! Please write here or

if you can, call me....504 400-1994 Thank ya'll so very much....Sue

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