Re: Nettie

[Guest guest]

- I'm glad to hear that Nettie will be starting IVIG soon, I hope that

the benefits will be immediate but will play the bad guy and say it may take

up to 3 months or more to see improvement. Regarding your question about

fluctuating levels, in toddlers/preschoolers it is possible for levels to

come and go, that's where they come up with the term " transient " . When

children get to Nettie's age the levels tend to stay put. I'm not sure what

" anergic " means so I am no help in that area.

Hope you're feeling better soon. Any idea when the first infusion will be?

Ursula Holleman uahollem@...

and Macey's mom (4 yr. old with CVID, asthma, sinus disease, GERD,

kidney reflux, Sensory Integration Disorder, Diabetes Insipidus)

http://www.pedpid.com

http://www.onelist.com/community/PedPID

[Guest guest]

Mom to Annette,

My son started IVIG at 2 1/2 yrs. and it has

helped him so much. It actually took about a year

to get the dosage right so that he is well most of the

time, not sick 5 days of every 7. He has not had

problems taking it except once during the shortage

a different brand was substituted and he had a

reaction to that. He takes Gammamune N. He has

never had a port and has taken by vein for about 10 yrs.

I hope it helps Annette a lot. I went to a support group

meeting recently and found only 1 patient had a port

and he was the most recently diagnosed. His doctor just

prefers ports. Best Wishes.

Jan, Mom to Ben (SDS and CVID) and allergies and

asthma

RCurk@... wrote:

> I received a call today from my daughter's immunology clinic. After much

> discussion and contemplation (yeah, right), they have decided that they want

> to try a trial run of IVIG. They want to do it for 1 year and see if she

> develops anymore pneumonias or go bacterimic. They are also going to do a CT

> scan of her lungs to see if they can pinpoint any severe damage in her right

> lower lobe that may account for all of her pneumonias there. We are going to

> do it every 4 weeks via vein at first. If she has trouble with access after

> the second dose, we will discuss a port. We will do the first 3 doses in the

> clinic and then move to homecare if there are no complications.

>

> Over the weekend she developed a very severe bout of diarrhea and vomiting.

> She was weighed at school and she has lost 9 1/2 lbs in just 3 days!

> Hopefully we will be able to replace all of that with fluid and food now that

> she is no longer sick. She has had a rough month, 2 pneumonias, 1 sinus

> infection, and this stomach thing. Hopefully the IVIG will help her get back

> on her feet.

>

> I truly hope that all of the little pumpkins out there in the pumpkin patch

> are doing well. I am sorry to hear that Wade was so sick. Positive thoughts

> have been going his way. The list seems really quiet right now and I hope

> that no news is good news. How is Annette doing??? Has she heard anything

> else from the CPS?

>

> Well, I am sick now and need to try and sleep before the rugrats get home

> from school. Take Care and God Bless.

>

> Mommy to 10 yo Annette (IgG subclass 2 and 4 deficient, HIV+, developmental

> delay, g-tube, asthma, lipodystrophy, spastic CP) and 4 yo (brain

> tumor).

> <A HREF= " http://www.pilink.com/ny/my2angels/index.htm " >Click here:

> CaringBridge - my2angels</A>

>

> ------------------------------------------------------------------------

> Accurate impartial advice on everything from laptops to table saws.

> http://click./1/3020/7/_/480115/_/956686651/

> ------------------------------------------------------------------------

>

> This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.