Re: Anybody here in upstate NY

[Guest guest]

I'm sorry your son is having so much trouble and has been through so

much. I would contact the Immune Deficiency Foundation for a

referral of a pediatric immunologist in your area. 1-800-296-4433.

They are very helpful and they have books for your son to help him

understand what is going on.

My son has been on IVIG since he was 3 months old. He initially got

his treatments in an immunology clinic (actually heme/onc, but that's

another story) and when he was 3 we moved to home care. We put emla

cream on (which numbs the area) a half hour before the nurse comes.

Our nurse does the stick, which is the hardest part for Mark. Mark's

brand of IVIG can run a little faster, so the infusion takes about 2

hours. He has it done every 4 weeks. We have been fortunate in that

he doesn't complain of any side effects very often. We actually do

it in the morning and send him to school in the afternoon if he's

playing fine. A lot of moms on this site have their own web pages

that show different treatments and I'm sure they will chime in here.

Mark likes to look at the pictures of " other kids like him " .

We have had a really rough year this winter with sinuses. He has

been on atb all winter for one infection after another, so I can

relate. Spring can't come soon enough for us. Good luck,

, mom to Mark, 6, CVID

>

> My 7 year old son was recently diagnosed with PID. We have been

> traveling to Boston, Ma which is a 4 1/2 hous drive for us. Just

> wondering if there are any resourses close to me that can help. The

> doctor told us he as polysaccharide antibody deficiency, but no

other

> answers. We have been doing most of the research ourselves online.

He

> did tell us if his next blood work on the 20th doesn't comeback

good he

> is going to start IVIG. Just wondered if anybody could give us some

> insight.

> He was diagosed in January after every dr we saw told me i was

crazy,

> there is nothing wrong with him. He has had so many ear infections

he

> is deaf in the left ear and has had 10 surgeries for Cholesteatoma.

Now

> his right ear is losing hearing pretty fast. He did get fitted for

> hearing aids last week. Now we are into the sinsus infections, and

not

> being able to breathe thru his nose. He is on prophalactic

antibiotics

> and has still gotten an infection. The doctors around here kept

telling

> us we were young parents and we were just over reacting. I told

them

> i'm sorry i am his mother and i know something is wrong.It only

took 5

> years of testing to find a doctor who didn't think i was crazy and

did

> odd tests on him and sure enough i was right.

>

[Guest guest]

kmjm54 wrote:

>

>

> My 7 year old son was recently diagnosed with PID. We have been

> traveling to Boston, Ma which is a 4 1/2 hous drive for us. Just

> wondering if there are any resourses close to me that can help.

First of all - welcome to the group -- but please give us a name to

address you! And, we also we have no way of knowing whether you are

south or north or west of Boston - so, if you want to know doctors in

the area, you will have to be a little more specific. However, there

are some great doctors in Boston - and it sounds like you've found

someone to give you a diagnosis -- so you may want to continue to see

him/her until you get a treatment plan going. Then usually you can

find a local pediatrician or infectious disease doctor who will follow

that doctor's protocol in caring for your son.

My first suggestion to you is to call the Immune Deficiency Foundation

at 1-800-296-4433 and ask for their Patient and Family Handbook and

anything else they have to help you start your education on PID.

Also, I just want you to know that many of us can relate to your story

because unfortunately, that's a common story. It's terrible the way

many of us were treated before diagnosis. What I want to assure you is,

now that you have the diagnosis -- it should get a little easier.

Hopefully, you can begin treatment, watch your son get stronger and

healthier and start discovering his " real " personality and potential.

God bless you on that journey! If we can help with questions, please

let us know.

In His service,

dale

[Guest guest]

Dale Weatherford wrote:

we have no way of knowing whether you are

> south or north or west of Boston - so, if you want to know doctors in

> the area, you will have to be a little more specific.

Okay - that's what I get for answering while I'm still asleep! Sorry

about that -- I just saw the title of your e-mail -- guess you are in

upstate NY. Anybody got information for this parent????

In His service,

dale

[Guest guest]

Hi there,

We are in the upstate, NY area (syracuse) and would be happy to share what I can

to help you.?

www.caringbridge.com/ny/my2angels

[Guest guest]

WE are in Dolgeville, Ny but we travel to syracuse frequently for our

children's ent, allergist, dentist etc. We live about 1 1/2 away but it

is worth the drive for better care.Is thee any doctors you are aware of

that does the immunologist work in syracuse? I would appreciate any

feedback you could give me rather than traveling to boston, ma every 3-

4 weeks like we have been since January.

Thanks,

Kristy

>

> Hi there,

>

> We are in the upstate, NY area (syracuse) and would be happy to share

what I can to help you.?

>

>

>

> www.caringbridge.com/ny/my2angels

>

>

>

>

>

[Guest guest]

Hi there Kristy,

Wow! Boston, MA, that's quite the trek back and forth. I would love to say

that the doctors in Syracuse are wonderful, but, I'd be lying. I don't have a

great deal of confidence in any of them. They are very, very concerned with

the numbers on the paper and virtually ignore the clinical picture. In

addition, they are very conservative with the IVIG and tend to wait too long and

then pull you off to give you a " trial " at 6 months over and over again. In

addition, they are virtually impossible to get to see. Normally, you're

assigned

an NP and that person is your contact person. The problem is, is that the

NP's aren't allowed to make ANY independent decisions and have to confer with

the docs every Tuesday at their weekly meetings. I would say to go to

Rochester, as they have a fantastic infusion clinic (it's where we go for

) and

the hospital in general, is very interested in using IVIG for their patients.

But their Immunologist just left and I don't think their ID team sees PID

patients. However, with that said, someone must be seeing the existing patients

they have and it wouldn't hurt to call them. Rochester is just under 2 hours

for us and we're out there about 5 times a month for many of their specialists

(we use very, very few docs in the Syracuse area).

Sorry I couldn't have been of greater assistance!

Take Care and God Bless,

_www.caringbridge.com/ny/my2angles_

(http://www.caringbridge.com/ny/my2angles)

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