Re: Hi, I'm new-long intro, need to vent

[Guest guest]

Janet - we have another family on the list that sees Dr. Hostoffer. He is a

wonderful doctor, very well published in the world of PID. Many PID

patients start into this roller coaster around puberty. It has something to

do with the hormones and how they either trigger or wreck havoc on the

immune system. Our daughter was diagnosed when she was 2 and we were told

that there was a possibility that she might actually start an immune system

at puberty. If she is totally deficiency in IgA then I would ask Dr.

Hostoffer if she has anti-IgA antibodies. These could make replacing her IgG

difficult. He can explain it more fully to you. Just something you want to

know. Good luck with the Prevnar response. If she doesn't respond the

first time they may try a second booster shot so don't think that they are

putting you off. The road to diagnosis is not very straight and narrow.

Plus at times PID's are a progressive set of diseases. Diagnosis may change

over the period of time.

A wealth of information is at www.primaryimmune.org which is the web site

for the Immune Deficiency Foundation. 800-296-4433

Ursula Holleman

mom to (11 yrs old) and Macey (8 yr. old with CVID, Diabetes

Insipidus, colonic inertia)

http://members.cox.net/maceyh

Immune Deficiency Foundation - Peer Contact for GA

http://www.primaryimmune.org

/

[Guest guest]

Hi Janet- Sorry to hear that things are so rough. As for school, as that

is my area of expertise since my son was just diagnosed as well and I know

NOTHING about PID yet! Anyhoo, yo may want to contact the social worker

and ask to set up a 504 plan due to health concerns. This is an

educational plan stpuklated by the American with Disabilities Act that

would entitle you daughter to accomodations in her school and classes,

such as extended time for tests, home tutors, shortening of assignments

during times of crisis, etc. Plus, it gives the teachers something that

they need to be accountable for and also gives your daughter legal rights

to education, all of which are paid for by the district. if you need more

ino, let me know!

Ta ta for now,

Bilingual Special Education

Wheeling High School

847-718-7181

scoleman@...

[Guest guest]

In a message dated 4/5/2004 9:31:57 AM Eastern Daylight Time,

scoleman@... writes:

yo may want to contact the social worker

and ask to set up a 504 plan due to health concerns.

Thank you so much for this information ! I am sorry to hear about your

son. Keep us informed. I am so thankful to have found a nice group of

knowledgeable caring people here.

Janet

[Guest guest]

Hi Janet,

here, welcome to the group, lots of info and support here. Good luck with

Brittany's test results. My daughter has Selective IgA def, I know what you mean

about when the doc's say we will just treat the infections as they come. We are

now pursuing IVIG for as her infection rate is through the roof this

year, she has missed, due to illness (and a few days to fatigue) 61 days so far.

Thank goodness for her 504 plan. Whomever you just told about one, it's a great

idea, it gets tough at times. Well gotta go.Hi to all.

mom to Sel IgA def, asthma, gerd

Hi, I'm new-long intro, need to vent

Thank you for letting me join. I was so excited when I found this group!

My daughter Brittany is 13 and has CVID. She was diagnosed two years ago when

her glands would swell and get infected constantly with no other symptoms.

First they took her tonsils out. That didn't help, she was admitted in the

hospital 9 days after her surgery for infection and failure to heal from the

surgery.

When her glands continued to swell her Ped. sent us to a cancer Dr. (forget

what they are called, very forgetful lately, sorry)

He is the one however that found out her immune system was efficient. The

original diagnoses was IGA Def, no IGA.

We were sent to another Dr. (Internal Medicine) he said same thing. Just

treat infections as they occur. Well, infection after infection, everywhere in

her body. Ears, sinus, eyes, skin, yeast infections, rashes from infection.

Hospital admissions for strep and staff in her body. ETC.....................

We finally found a well known Dr. in Cleveland Ohio. Dr. Hostoffer. He

has begun testing again. So far he has found IGA, and IGG subclass 2. He just

gave her the Pneumonia vaccine 3 weeks ago. So in another week will have

blood drawn to check that out. He said it could possibly help her IGG also. He

thinks she has Chronic Muco. Candidia, (not spelled right) So she is on

Diflucan

everyday due to yeast, and toenail fungus that hasn't responded to the meds

for that. Raynolds, because her hands are always red or purple and cold.

Chronic fatigue because she is always tired. Etc... He said it would be a

while to

pin everything down.

I can't even put her earrings in her ears anymore they get infected right

away.

She has always been such a very happy child. But now all this is getting to

her. Hospitals, doctors, tests, missed school days, kids teasing her at

school.

She got her first C ever on her report card the other day and she cried and

cried. She has always been a straight A student. The counselor is however

checking that grade out because it was an in school project that brought her

grade

down and she was in the hospital at the time. So not fair at all. So that may

be changed. I hope so for her sake. She is so hurt.

Thank you for listening! I really need to talk with those who are in my shoes

so to say.

Sincerely,

Janet