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Visiting UCSF again tomorrow...need advice (long sorry!)

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We are taking Jordan back to UCSF Children's tomorrow. We were there two weeks

ago and after looking at his latest labs and my list of his illnesses over the

last year they recommended getting his tonsils & adenoids out and ear tubes in.

We are lined up to visit the pediatric ENTs at Stanford in three weeks. However,

in the last week Jordan has visited the ER three times due to high fever,

labored breathing and constant vomiting. His pediatrician thinks he might have

mono. He has just recovered from Whooping Cough and the flu as well. I have

hit my wall! I want to push the docs more on why they don't want to treat him

with IVIG.

I have compiled a list of everything we have been going through including dxs.

What I am trying to get advice on is do I push for IVIG or SCIG? I know the

treatments are not easy and I am hoping that I am not just thinking this would

be a way to get our life back to normal. At this point, I would rather give him

a once a month or week treatment than be so isolated by his illnesses. Our local

immunologist (doesn't specialize in children) and our pediatrician both say yes

to IVIG and UCSF Children's immunology says his numbers aren't bad enough to put

him through that. I am at a lose of who to trust and that is making flip flop on

how hard to push. Does that make sense?

When I am looking at the labs, I see the following:

Somewhat low IgG, IgG subclass 3 & IgM

Low Lyphocytes

Low Iron

In some labs he has high B cells and in most others he is low B cells

His Isohemagglutinin (B) is High (1:4)

His pneumeccal (he is about 50% of normal) & tetanus titers are ok

He is gaining weight ok and developing fine

Basically, everything that is off is just slightly off and he " looks " pretty

healthy

When I am looking at my child, I see:

Respiratory, ear, stomach illnesses at least 2x/month. Antibiotics used 7 times

since August. Needing surgery for ear tubes and taking tonsils & Adenoids out.

In the ER 3x last week due to labored breathing from illness. On top of this in

his 2.5 short years of life he has had RSV, Hand Foot and mouth, whooping cough

and possibly mono. Jordan missed at least half of his preschool year, misses

birthday parties at the last minute, we have to cancel plans often at the last

minute, he sleeps with a humidifier by his bed (for his cough) and towels (for

throw up) under his bed just in case. He should own stock in Tylenol and

Motrin. We have calls into the doctor at least two-three times a month. The

rest of my house can't get healthy either as we are all passing around what

Jordan has. My complaints could go on, but I will stop boring you and save it

for the docs.

BTW: I talked to the nurse practitioner on the phone last week and she agreed

that it might be time to consider IVIG, but I have been told no so many times

and just got his labs back from last week and they don't look too bad, that I

have this feeling the doc will say no again.

Thanks again!

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