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

[Guest guest]

Everything I mentioned below are below normal, but not too much. I have thought

about using prophylactic antibiotics, but don't know how much good they would do

since he is mostly getting viruses. Also, he has struggled with candida and I

don't know if taking antibiotics continually will make that worse.

>

> It sounds like our life. My son is on the border of CVID as well with some

> immune abnormalities which translates into he's always sick but not sick

> enuf yet for treatment. Low normal (on the cusp) of below normal igGs, low

> lymphocytes, low iron, high t cells, b cells, and 2/7 response for

> pnuemococal and none for tetanus. But he's not sick enough to " put him thru

> that " . we've just been to children's Oakland.

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> When you say somewhat low IgG do you mean low but within the range of normal

> or below normal? I think that's a lot of what the doctors look at. I think

> you may have to be assertive about wanting to try it which is hard when you

> don't know how he will react and you don't feel its your place, but I bet in

> retrospect you will question why you went for so long without it.

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> From: [mailto: ] On Behalf Of

>

> Sent: Monday, June 14, 2010 2:37 PM

>

> Subject: 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

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> Low Iron

>

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

>

> His Isohemagglutinin ( is High (1:4)

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> 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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