Letter to Doctor

[Guest guest]

Greetings All,

After a long journey, we got a diagnosis from NIH regarding my

daughter yesterday - FMF. I have a lot of questions and concerns

because she doesn't quite fit the profile...as I've learned through

this forum - that many - if not most - do not fit any one particular

profile.

Once I got the results, I sent the following to a doctor that upset

me to the point of tears and left me doubting my gut " maternal "

instinct. I didn't send it out of anger...I just had to " close a

chapter " in a frustrating chapter.

While we're onto the next chapter, I thought you might understand

where I was coming from - and encourage all parents to keep making

appointments with different doctors and not give up because you are

not taken seriously - there are many people, including Fran, members

of this group, and assorted doctors, that know where you are coming

from.

Thanks,

JK

***

Dear Doctor X,

Allow me to re-introduce myself – my name is JK and I brought my

daughter, MK, to see you regarding her recurring fevers (i.e.,

approximately 40 days of fevers within a year and other assorted

symptoms) on December 17, 2003. During that visit, we discussed her

medical history, you performed a brief physical examination, and you

made a few comments, including the following paraphrased blurbs:

- " Without additional medical records, there is not a lot I can do

for Marin. "

- " I'm not surprised by her fevers – I see a lot of that

with

children in day care. "

- " She just looks so...healthy. "

- " Some parents find it necessary to quit their jobs because of

their children's frequent fevers...so MK's situation is not

as bad as

I have seen. "

You suggested that we continue to monitor MK's situation with her

pediatrician, even though I mentioned that we had done so and that

was the main reason you were referred to us. You did not suggest a

course of treatment; you did not perform blood tests; and you did not

refer us to a specialist that might be more familiar with Marin's

symptoms. For that, I am grateful...and I owe you a sincere " thanks. "

Your comments - and lack of support - inspired me to research

periodic fevers in greater detail. As a result, I discovered a

periodic fever study at NIH. Within the past six months: 1) I

contacted NIH; 2) I submitted MK's medical information; 3) MK was

accepted into NIH's study; 4) MK was examined/tested at NIH; and

5)

MK was diagnosed with Familial Mediterranean Fever (FMF).

Please keep in mind that I only went to see you to help my daughter.

Instead, I walked away feeling as if I had wasted your time by

bringing her to see you - and that Marin's condition was not

something that required medical attention. I am writing to you in

hopes that, in the future, you will take children, who may not seem

–

or may not be - as ill as many of your other patients, seriously.

****

While it won't change anything for my daughter, I'm hoping the

doctor, who responded to the above within five hours of receiving my

fax, will be a little more open to other -related patients just

looking for answers.

[Guest guest]

I am sorry about the diagnosis of FMF, however I am relieved for you... now

you know what the fevers are from and you can begin appropriate treatment.

I am also VERY glad you wrote to the doctor. I did the same when ph was

diagnosed with ... although it is not as definitive as FMF.

Pleeeeeeeeease keep us updated on your child... We are here for you. There

are other members here who have been given an FMF diagnosis... I am sure you

can network with them too.

God Bless,

Fran

Fran A Bulone

Mom to ph 5 yrs old

Waxhaw, NC

Owner & Moderator Group

[Guest guest]

I am sorry about the diagnosis of FMF, however I am relieved for you... now

you know what the fevers are from and you can begin appropriate treatment.

I am also VERY glad you wrote to the doctor. I did the same when ph was

diagnosed with ... although it is not as definitive as FMF.

Pleeeeeeeeease keep us updated on your child... We are here for you. There

are other members here who have been given an FMF diagnosis... I am sure you

can network with them too.

God Bless,

Fran

Fran A Bulone

Mom to ph 5 yrs old

Waxhaw, NC

Owner & Moderator Group

[Guest guest]

Great letter! I would love to know what the doctor's " response " was. I'll

bet it felt good to send that. I'm sorry about the diagnosis of FMF, but

I'm sure you're relieved to finally have an answer. Keep us posted on your

progress, and again, great job on the letter.

Rosemarie

Mom to Danny age 10

Denver, CO