Dale

[Guest guest]

sarah larson wrote:

>

>

> Dale,

>

>

> Her doc says IVIG will not help protect her from

> getting sick since they are viral infections?

> Is that true?

IgG replacement therapy only helps you build antibodies to infections.

It doesn't fight germs. So..... if Gwynn's problem is that she doesn't

build antibodies -- then it should help. If the problem is her

complement system -- and she makes antibodies, then I don't think it

would help. The way I understand the complement system is that it

causes the germs to be more easily detectable allowing the antibodies to

do their job.

But I will say that Katy was dealing with more viruses than bacterial

infections -- and IVIG helped stop that incredibly well. It took almost

a year before we saw major improvement because she was so run down --

but she stopped having the constant viruses once she got on a good dose

of IVIG. So, I would say, yes, IVIG helped stop the viruses. Whether

it was directly or indirectly -- meaning that maybe because she stopped

having so many bacterial infections it allowed her body to be stronger

so it could fight the viruses -- I don't know.

Your body builds antibodies against bacteria and viruses. However,

viruses tend to mutate so quickly that no one can have all the

protection against all the new forms. But..... at least IVIG gives you

the protection from the basic ones.

Now, another subject:

We have a lot of parents from all over the US. Some of them are seeing

top ranked immunologist that have all the latest and greatest research.

Some of them are seeing immunologists that have NEVER treated an

immune deficiency and are really struggling to figure out what to do

next. Some are seeing allergists who have immunology in their title but

don't know the first thing about PID. I want to encourage you to make

sure that your immunologist does indeed know what he/she is talking

about. It's okay to ask him/her how many other PID patients he sees.

It's okay to ask for a referral to a clinical immunologist that has

more PID patients. If you want to post your state, there's probably

someone on the list who can tell you a great immunologist in your area.

Also, it's okay to change doctors. I was so uncomfortable with that.

Here's our story in a nutshell. Katy's pediatrician didn't feel there

was anything wrong. He accused me of " wanting " her to be sick. He

accused me of needing to see a psychiatrist -- and I agreed! He set us

up with a psychologist. After she interviewed and me and then

Katy, she told me that she felt Katy was very seriously ill and that

and I had better find treatment for her and get out of denial.

She told me that she would get fired for saying so -- but I needed to

change doctors and fast! I was so relunctant to change pediatricians.

Somewhere I had the idea that if I changed doctors, they would feel that

I was flaky and not be willing to work with me. So, we changed doctors

and got a pediatrician who began to document what was going on with Katy

and personally took it upon herself to find a diagnosis. She finally

did after another 6 months of trial and error and every test in the book.

So we got referred upstrairs to the Immunologist (we thought). But

instead that lady was an allergist who had studied some immunology back

in medical school. At least she knew that when the IgG, IgA, IgM, IgD

and IgE all came back low -- there was something wrong. So, she decided

to check to see if Katy would build antibodies to tetanus. Long story

short -- she didn't -- but that was after this doctor had vaccinated

Katy 5 times with Tetanus and twice with Pneumococcal, not to mention

all the other tests that she ran that were totally unnecessary. So....

what I'm trying to say is that because I didn't know to ask questions,

Katy was needlessly used as a research subject for this doctor. All it

would have taken is a call to the IDF Consulting Immunologist program

and she would have known what tests to run and how to interpret them.

She would have learned that you DON't keep re-vaccinating, etc. I just

wish I had known to go to a higher level immunologist faster instead of

putting Katy through such torture.

So..... I'm praying right now that you have or will soon find a doctor

with training in PID treatment that can guide you through all the ins

and outs and give you assurance of what is going on. Once you find that

doctor -- love them and appreciate them!!!!!!!! Our pediatrician was a

gift from God and helped us navigate through everything.

Hope some of this helps. Feel free to ask more questions if I've

muddied the water!

In His service,

dale

[Guest guest]

Dale Weatherford wrote:

" She would have learned that you DON't keep re-vaccinating, etc. "

Our immunologist initially wanted to revaccinate the boys. We were reluctant

because it hadn't worked in the past. Is there another reason why you wouldn't

want them re-vaccinating? Thanks.

[Guest guest]

Quinton wrote:

>

>

> Dale Weatherford wrote:

> " She would have learned that you DON't keep re-vaccinating, etc. "

>

> Our immunologist initially wanted to revaccinate the boys. We were

> reluctant because it hadn't worked in the past. Is there another reason

> why you wouldn't want them re-vaccinating? Thanks.

>

>

>

Re-vaccinating once is reasonable. Re-vaccinating 5 times is

ridiculous! And I'm told that re-vaccinating within 3 years is actually

dangerous -- don't know what would happen -- but it's not recommended!

In His service,

dale

[Guest guest]

sassykay59@... wrote:

It's going to be a rough road getting them to approve,

> but between the expert opinion and the offer to do home care or

> SubQ--well, I'm praying. I'm also not taking NO for an answer.

I'm so happy for Bri! Sounds like a worthy fight!

Hang in there and keep up the fight!

In His service,

dale

[Guest guest]

Bring a pillow for the ride home....

Liquid Tylenol.....

I lived on broth....

Slimfast optima or Carnation Instant Breakfast

-------------- Original message --------------

From: " Dale " <dale.strickland@...>

Can everyone tell me some things I will want to make sure I have in

the house when I come home from the hospital on tuesday???

Thanks!

>

> > So, Dan/Sandy, I broke down yesterday afternoon and had an

unfill.

> > Went from 1.4 in a 4 to 1.0. It was sooo nice to be able to eat

last

> > night and drink a shake this morning. Now I just have to be

mindful

> > of what I do eat. Have to remind myself that the band is a tool

to

> > help me, not to do all the work for me. Here's hoping I still

have

> > the same weight loss.

>

>

> --

> " It's OK to be a little broken, everybody's broken in this life "

Jon Bon Jovi

> Dan Lester, Boise, Idaho, USA www.mylapband.tk

> Banded 4/27/03, Dr. Ortiz, Tijuana

> Started at 355, at goal in the 210-220 range for almost 4 years

> Ultimate goal of 195 Tummytuck in Boise and SmartLipo in Tijuana

>

[Guest guest]

Dear Sandi,

One of the first conferences I attended at IDF was done by a Dr.

Lederman from s Hopkins I think - who said that there was no reason

for " trialing off " as long as a definite diagnosis had been made.

(Meaning lack of protective response to vaccinations - I suppose). But

only recently has the protocol for IgG replacement been accepted and

approved.

Someone posted that statement not long ago -- which was simply -- if a

definitive diagnosis has been made, there is no need to ever trial off.

Dr. Lederman's position was that if the IgG should decide to increase,

it would show up when the IgG levels were tested. And IgG levels should

be tested regularly (every 6 months - I believe). He had a patient who

spontaneously decided to start manufacturing her own IgG around age 20

-- and the test showed a higher level of IgG than previously and they

trailed off and discovered that she was making protective levels. So,

his position was that trialing off was not necessary.

Getting that in the hands of all the treating physicians is the next

step. You can order that protocol from IDF I believe and submit it to

your doctor.

And, I'm no longer working with IDF. I've got my hands full here at

home with caring for my mother. And so much of what IDF does assumes

that I have a child or family member with a PID, and I felt rather

useless and like a 5th wheel. So.... I am no longer serving as a peer

support. So I'm getting old and rusty!!!!

But I'm still...

In His service,

dale

sassykay59@... wrote:

>

>

> Why take him off -- ever?????? I'll never

> understand trialing-off!

>

> Can you get doctor's orders to not send him back to school until his

> levels are up?

> ______________________________________________________

>

> Dale--

> I will never understand trialing off either!! His current (and new)

> Immuno says that he will only trial him off one more time...after four

> years. If he fails that time, he won't take him off again. I do feel

> some relief about that. This will ensure that he is not taken off during

> High School again.

> His school has been great about everything...no hassles whatsoever. I

> have been wrestling with sending him back, but both of us are nervous at

> this point. Maybe I will wait, but he's missed so much school at this point.

> Since I'm writing to you...have you asked the IDF this question about

> trialing off?? Because I always wonder if they set a different tone if

> the Immunos would follow suit???

> Sandi, mom to , age 15 CVID

>

>