Re: WHen does a diagnosis come

[Guest guest]

In a message dated 8/20/04 8:18:30 PM Pacific Daylight Time,

careshabearz@... writes:

They keep

telling us they feel that this might be it. But i am tired of mights.

I want answers so we can treat him.

Hello--

I just wanted to share that I think of gaining a diagnosis as more of a

process. Unfortunately, it doesn't happen quickly enough for us Moms. It

sounds

like they need to rule things out first.

Hang in there--

Sandi, Mom to , age 11. Immune deficiency, Tetrology of Fallot,

Pulmonary valve transplant, Mitral valve stenosis, severe allergies, chronic

ear, nose

and throat infections, asthma and Carnitine deficiency. Suspected Di

Syndrome.

[Guest guest]

In a message dated 8/20/2004 11:18:35 PM Eastern Daylight Time,

careshabearz@... writes:

HOW long does it take to diagnose a child with PID. They keep

telling us they feel that this might be it. But i am tired of mights.

I want answers so we can treat him. They have discussed IVIG and he

is on prophylactic abx from about sept. through july. we have one

good month a year so far in the last year. He has asthma, chronic

sinusitis, GERD, developmental/behavioral delays, and other junk I

forgot to mention. Someone please give me some info. TIA for replies.

Care

Care,

It can take a long time to get answers when dealing with immune deficiencies

unfortunately. A lot of it has to do with finding the right doctor that

will order all the right tests (and preferably all at once so that it doesn't

draw the process out longer and longer). And even at that it is not a quick

and easy answer. For us, it took 4 years of testing. Mostly because we didn't

have the right doctors and they looked every where for problems except the

immune system. And even though some of their tests should have clearly pointed

to the problem they weren't the right doctors so they didn't interpret the

results correctly. It was a mess. And I was a mess waiting. It's horrible to

want answers, scratch that, to NEED answers. I know that you are feeling very

helpless right now. But it does sound to me that your doctors are heading the

right direction although a bit slowly. Is your son seeing an immunologist?

Most allergists also call themselves " immunologists " but they don't have

their specialty in immunology they just took a class somewhere so they could

have

the title. You need to have a clinical immunologist, that is very important.

My son has never responded to allergy testing (later it was discovered that

he has no IgE whatsoever, which is a bit weird). He never even gets a bump

when bitten by a mosquito UNLESS the dumb thing gets infected then by george

he'll ooze and puss and all that stuff. He held a bee in his hand yesterday

and never responded to that bite either (he said it was safe to hold because he

was sure it was a boy bee which according to him do not bite, how he would

know the difference is beyond me but he was wrong and it did sting him). As

for your son being conceived after you receiving radioactive iodine, I didn't

have any medications at all prior to pregnancy or during. Not even my allergy

meds. And my son has Hypogammaglobulinemia and he also has Di

Syndrome. My point is, one might not have anything to do with the other. Do not

beat

yourself up that you may have somehow inadvertently caused your son's

problems. My husband was in the first Gulf War, he always questions every

doctor we

see and asks them if that is responsible for Kody's problems. It's eating

away at him. The thing is, even if we knew the answer, it doesn't change the

here and now. Focusing on what we can do now is much more important. Hang in

there, ask questions (we'll answer!!!) and don't be afraid to push your

doctors for more tests and answers a bit more quickly. They do not feel the

same

sense of urgency that you do!!

Diane, Mom to Takoda, AKA Kody, Di Syndrome, Hypogammaglobulinemia,

Seizure Disorder, Asthma, GERD, bowel dysfunction, learning disabled, central

nervous system problems (as yet undiagnosed), possible mitochondrial disorder,

CAPD, generalized anxiety disorder, and all around really great kid! Also

Mom to Arika age 17, Kaila age 13 (asthma/allergies), and Sami age 10

(dyslexic, asthma/allergies). Please visit my website at

_www.geocities.com/schmidtzoo/SNAK_ (http://www.geocities.com/schmidtzoo/SNAK)

[Guest guest]

from Dale, Mom to Katy, CVID, age 20

Care, I'm so sorry it's taking so long. Yes, you should show them the

lump caused by the tetanus. Katy had huge reactions that I tried to

tell them about the next time I was in and they just wrote it off to

Mom's exaggerations. Katy had HUGE LUMPS and they were hot and hurt her

a lot! So, yes, make them deal with the reactions, too! I don't

know whether it will change the course of their testing, but it will

make you feel better if they know.

You didn't say how old Davin is now, so I can't tell how long it's been

in getting this diagnosis. I repeat other information that you've been

given -- it's vitally important that he be tested by someone who knows

what they are doing. You can call IDF at 1-800-296-4433 to ask about an

immunologist in your area. Unfortunately, I let a

allergist/immunologist test Katy instead of taking her to a clinical

immunologist (I didn't know there was a difference -- she SAID she was

an immunologist!) She gave Katy 5 tetanus shots before she was

convinced that she wasn't going to build antibodies. Apparently that's

NOT standard procedure. And looking back I hate myself for letting her

do that to her but I didn't know better at the time. And each one

reacted terribly, but she didn't build antibodies.

Also, keep in mind that even if you are with a great immunologist -- it

takes time. And so many of these tests cannot be run after you start

IVIG replacement therapy. After you start IVIG, the tests you run give

you the IVIG results -- not Davins. So, the immunologist tries to test

everything that he can before prescribing IVIG -- otherwise you have to

go off IVIG periodically to re-test. And you must be off IVIG for 3

months before those tests can be run. So -- you are talking about

another 6 months of illness after you've finally begun to get healthy.

It's much better to get all the tests taken care of at the beginning if

at all possible.

I hear your frustration. I know how hard it was for me. Try to focus

on Davin as a child, not Davin as a patient. Make memories and fun

times each day for both of you. Enjoy him and celebrate the wonderful

things in life and try to separate the two. Someday soon you'll have

the diagnosis and you'll start a treatment plan and you and Davin can

find a new sense of normal and life will continue to be interesting and

full of surprises!

My precious little Katy that I thought would never live through testing

and then we waited another year to start IVIG because there was a

shortage and she wasn't " life-threatening " so she couldn't start!

Then, we started and adjusted and she started getting stronger. And

on Monday -- she returns to college for her junior year. She's living

in an apartment on campus with a girl friend and looking forward to

another great year. She gets IVIG every 28 days. She feels rotten for

2 days and the rest of the time, she does pretty good. A little

sinusitis, a little gastro problems, but overall, pretty normal. And

she's living her dream of being an art major!

In other words -- hang in there. If you need to change immunologists,

don't hesitate to do so. If you feel comfortable with him/her then talk

with them, show them reactions, measure the lump and give them a call.

Talk with them about the delays and work with them in getting

solutions. And yell when it gets to be too much -- because we've all

been there!

In His service,

Dale

careshabearz wrote:

>Someone please give me some info. TIA for replies.

>Care

>

>

>

[Guest guest]

from Dale, Mom to Katy, CVID, age 20

Care, There's a couple of things I would like to recommend to you. One

that you may have already tried is to talk with your Colorado Division

of Insurance at 303-894-7499. That's your State Insurance commission

and they should be able to intervene on your behalf to see the

specialist that your child needs. The other agency is called

A.C.C.E.S.S. Their telephone number is 888-700-7010. The assist

families with social and economic problems that can develop when

treating a chronic medical condition, such as PID. There's also the

Patient Advocate Foundation: www.patientadvocate.org at 800-532-5274.

This is a national non-profit org that serves as an active liason

between tyhe patient and their insurer, employer, and/or creditors to

resolve insurance, job discrimination and/or debt crisis matters

relative to their diagnosis through case managers, doctors and attorneys.

I hope that someone in the above group can give you some help. Then,

you can always call the Immune Deficiency Foundation at 1-800-296-4433

to get their suggestions for getting your babies into the specialists

that they need to see.

Finally, if you choose to use this allergist as an immunologist, please

get him on the IDF mailing list for treating physicians so that he will

receive all the latest research updates. Also you can give him the

Consulting Immunologist number which is a totally free consult for him.

That number is 877-666-0866. Sometimes having a compassionate and

caring local doctor is half the battle!!! But, I do want the kids to

get a solid diagnosis and not something that you wonder about for years!

Hang in there and let me know what kind of reception you get from these

places. I like to know so that I don't recommend someone that's not

solid.

Hope some of it helps -- just knowing that this group understands helps!

May God bless you as you search for solutions.

In His service,

dale

Care Arrasmith wrote:

>We are unable to see a clinical

>immunologist because insurance has denied us on it.

>We have healthwave which is a state insurance because

>we are low income.

>