Hello to new members

[Guest guest]

Hello to all the new members. You have definitely come to the right place.

There is so much experience and knowledge here.

Update on .

Went to the Peds yesterday. has double ear infection, sinus infection,

strep throat, and upper respiratory infection. She received a shot of Rocephin

which she was not to happy about. They switched all her meds again. Nothing is

kicking this infection. She does not have pneumonia. Thank Goodness!!!

She is still very ill and weak. I felt so bad for her at the doctors. She

is so depressed along with physically ill. Her spirits are soooo down. I

have never seen her this blue. She told the doctor that she feels like nothing

will make her feel better and she " just doesn't care anymore " She was sobbing.

I choked back tears. Her pediatrician is so compassionate, she started to cry.

She told that she understood because she has been sick her entire life

also, and just hugged her. was truly an emotional moment.

I had to be the bad guy at the doctors because she became very vocal about not

getting this shot. What do you do when your child starts flipping out in the

doctors office and sobs because they don't want any more pokes. I tried

comforting ;her, hugging her, reasoning , nothing at all would calm her down.

She was raging mad one minute and sobbing the next. She kept insisting that

these shots do not help her and they do not work. This is so out of the

ordinary for , I was in shock. THe only thing I had left to do was

take the mean mom disciplinarian voice, and then she settled down. It truly

rattled me to the core. I told her dad, that if looks could kill , I would be

dead

O.K. I rambling , time to go.

Good days and Health to everyone,

Thanks for listening once again.

Sharon

s mom 11 PID

[Guest guest]

's on our list of really sick PID kids to pray for each night now.

It's an amazingly fluid list, with kids coming and going off the list. I

think it has really helped my 4 kids to know that other kids have Rebekah's

problems (and much worse).

I'm glad it wasn't pneumonia, but I'm not sure that the list of diseases she

has is a lot better!

Pam

wife to (16 years)

mother to , 9, Hannah, 6, Rebekah, 3, and Leah, 1

Rebekah has CVID and maybe some other stuff

RE: Hello to new members

Hello to all the new members. You have definitely come to the right place.

There is so much experience and knowledge here.

Update on .

Went to the Peds yesterday. has double ear infection, sinus

infection, strep throat, and upper respiratory infection. She received a

shot of Rocephin which she was not to happy about. They switched all her

meds again. Nothing is kicking this infection. She does not have

pneumonia. Thank Goodness!!!

[Guest guest]

This is a message mainly for the people who have joined recently.Hi peopleWelcome to the group. I thought you might like to know about some good linkson the internet.http://www.geneclinics.org/servlet/access?db=geneclinics & site=gt & id=8888891 & key=yvyThuThGZXK5 & gry= & fcn=y & fw=suti & filename=/profiles/bpes/index.htmlThis one is a good starting point. It does have a lot of detailed medicalterms, However, it is possible to understand some of it. Also, it isupdated regularly.The people who maintain the information are the lab in Belgium that do thetests. Also, being associate with the University of Washington, Seattle, itis considered to be a highly respectable source of information.Another good site is this one:http://www.emedicine.com/ent/topic97.htmThe main topic here is surgery. The author's credentials appear to be veryimpressive.

Both of these articles mention the subject of suitable time for surgery. Please remember that your doctor will know best. If you want a second opinion, look for another doctor.I would recommend that people print these articles and send them to theirdoctor. Ask your doctor to read it and to go through the topics with you,face to face, and explain what it means. They will be able to skip the itemsthat are detailed medical terms, or of little relevance.Take careShireen London, England

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