Re: Re: response to vaccines & Cindy

[Guest guest]

Welcome new parents! With regard to Bob's question about antibiotics v. IVIg, I

think this is a very personal decision between the doc and the parent. If the

child has a PID and is suffering needlessly, the antibiotic may not be doing its

work.

,

I have walked in your shoes for two miserable years, living with the unknown,

and then finally getting our daughter on the right course by our local immuno.

I will never forget having to hold her down for 8 sticks (7 blown veins) and

then being sent home because they could not get blood. We have dealt with

multiple vials of blood lost and wait times of 30+ days for results -- some of

which were not reliable (based on control blood results) and had to be re-done.

Our child was seen by a few well known immunologists probably the one you are

seeing at Cincy. My impression is that their approach to evaluating and

treating immune disorders is strongly influenced by their training and personal

experience. There is no existing protocol that all peds immunos use for

diagnosis/treatment -- though protocols/decision trees do exist. And then some

docs fixate on certain aspects of the decision trees. Each of my daughters

immuno's used a different part of the tree but, eventually, our local immuno and

general peds doc came to the same conclusion. And everything started to make

sense. Even the best docs sometimes forget to use their own native sensibility

and can be very patronizing. I applaud you for trying to get your child the

best possible care.

Feel free to write me on or off the list. Please keep us posted.

Best,

(mom to 4 year old with low everything)

smoot732000 <smoot732000@...> wrote:

,

Thanks for letting me know your experience with the immunologists

here. I would love to e-mail you later as well. We are here in Ohio

still and have more tests Monday, so we are about to leave for a

little weekend getaway until we have to go back to the hospital. If

it is OK I will e-mail you early next week. Thanks again, It seems

the opinion here is way off base for immune deficencies. They are so

well known, and do have much experience with rare diseases, so it

throws me off to hear them say this. Glad to know we were not the

only ones. Take care.

> > This immunologist here in Cincy is saying he could have

> > > cystic fibrosis, and wants tests to that,

> >

> > , I have no idea what the answer to your question is about

how

> much

> > is enough response. But, I want to assure you that most of our

> kids

> > have been tested for CF just to rule it out. So don't let that

one

> > throw you.

> >

> > I've found that you can get different answers from different

> doctors in

> > the same teaching hospital -- so, wait and see what all this one

> has to

> > say, then if it doesn't sound right -- ask IDF or this group for a

> > recommendation to another immunologist to check it out until you

> feel

> > secure with the answer. Since there is not a standard of care

yet,

> you

> > get a wide variation depending on everyone's pet theory. Trouble

> is --

> > that pet theory can hurt a kid's chances for a normal life. But,

I

> > would suggest that you let them check things out thoroughly

before

> > deciding to go elsewhere. Some of my early changing doctors

turned

> out

> > to be unnecessary. They were right in the first place!!! (At

> least one

> > of them was anyway!) I just had to get to the point of being

> willing to

> > hear what I didn't want to hear.

> >

> > Hope that helps and best wishes for a " real " diagnosis soon.

> >

> > In His service,

> > Dale

> >

>

>

>

>

>

>

>

> 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.

>

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