~Introduction~ Haidi

[Guest guest]

Hello, my name is Haidi (pronounced Heidi) and I am the mother of 2

daughters, (almost 3) and (11 months).

For the past 2 years, my oldest daughter has been getting sick just

about every month. The longest she went in between being sick, was

about 9 weeks, I believe, but it is usaually every 4-6 weeks. The

first time she was sick (she was 11 months old), she had a double ear

infection. She was sick again a month or so later, with another ear

infection, and red throat. (It is hard for me to remember exactly. I

did not document any of this, but now I wish I had). At the time, we

didn't have a pediatrician for her. We were taking her to a family

doctor that I was seeing. We were unhappy with their service, so the

next time she got sick, we took her to one of the local urgent care

clinics (since we didn't have a doctor). They gave her antibiotics. We

ended up taking her to the same UC clinic because we couldn't find a

pediatrician in our area that would take her insurance, and we had

been there before. They diagnosed her with pharyngitis and always gave

her antibiotics. She did have a few ear infections mixed in, and we

eventually had ear tubes put in her last year, but she was still

getting sick every month or so. I didn't think it was normal, but

everyone kept saying " it's not abnormal for kids to get sick all the

time " . Well, I am a stay at home mom, and my kids are not around other

kids that often, so I thought it was weird that she would be getting

sick like that.

Last year, after our second daughter was born, our insurance changed,

and we found a pediatrician that we really like. We took her to see

him and he said the same thing. " It's not uncommon for kids to get

sick a lot " . After he told us it was just viral, and that she didn't

need antibiotics, we just quit taking her every time she got sick.

Since we knew what to expect, fever (as high as 104), sore throat,

lethargy, etc.

It did concern me, but every doctor I talked to said it was normal, so

I just started to accept the fact that she was getting sick. I kept

hoping that she would out grow it as she got older, but that didn't

happen.

Last month when she was sick, we were getting ready to go out of town,

and her lymph nodes in her neck were swollen (which I don't recall

that happening before) so I took her to the pediatric urgent care to

make sure it wasn't something else, since we were going to be gone for

a week. I explained to the doctor what had been going on for the past

few years, and that was the first time I had heard about . He

didn't know the name of it, just told me it was a " fever syndrome "

(and it was an acronym with a P and an F in it) anHello, my name is

Haidi (pronounced Heidi) and I am the mother of 2 daughters,

(almost 3) and (11 months).

For the past 2 years, my oldest daughter has been getting sick just

about every month. The longest she went in between being sick, was

about 9 weeks, I believe, but it is usually every 4-6 weeks. The first

time she was sick (she was 11 months old), she had a double ear

infection. She was sick again a month or so later, with another ear

infection, and red throat. (It is hard for me to remember exactly. I

did not document any of this, but now I wish I had). At the time, we

didn't have a pediatrician for her. We were taking her to a family

doctor that I was seeing. We were unhappy with their service, so the

next time she got sick, we took her to one of the local urgent care

clinics (since we didn't have a pediatrician). They gave her

antibiotics. We ended up taking her to the same UC clinic because we

couldn't find a pediatrician in our area that would take her

insurance, and we had been there before. They diagnosed her with

pharyngitis and always gave her antibiotics. She did have a few ear

infections mixed in, and we eventually had ear tubes put in her last

year, but she was still getting sick every month or so. I didn't think

it was normal, but everyone kept saying " it's not abnormal for kids to

get sick all the time " . Well, I am a stay at home mom, and my kids are

not around other kids that often, so I thought it was weird that she

would be getting sick like that. She is NEVER sick with anything else

in between times, either.

Last year, after our second daughter was born, our insurance changed,

and we found a pediatrician that we really like. We took her to see

him and he said the same thing. " It's not uncommon for kids to get

sick a lot " . After he told us it was just viral, and that she didn't

need antibiotics, we just quit taking her every time she got sick,

since we knew what to expect, fever (as high as 104), sore throat,

lethargy, etc.

It did concern me, but every doctor I talked to said it was normal, so

I just started to accept the fact that she was getting sick. I kept

hoping that she would out grow it as she got older, but that didn't

happen.

Last month when she was sick, we were getting ready to go out of town,

and her lymph nodes in her neck were swollen (which I don't recall

that happening before) so I took her to the pediatric urgent care (it

was on a weekend) to make sure it wasn't something else, since we were

going to be gone for a week. I explained to the doctor what had been

going on for the past few years, and that was the first time I had

heard about . He didn't know the name of it, just told me it was

a " fever syndrome " (and it was an acronym with a P and an F in it) and

didn't go in to too much detail. So when I got home, I Googled it, and

started reading about it. It sounded JUST like my daughter!!! I

couldn't believe it!

Here is it 6 weeks later, and she is sick again, with the swollen

lymph nodes. I started doing a little more research on it, and that is

when I came across this group. I am so glad I found it!

If anyone has any advice for us as to where we should go from here, it

would be greatly appreciated. I plan on talking to her pediatrician at

her 3 year check up, which will be the middle of January, but I don't

know what he will say.

Anyway, sorry this was so long. Just wanted to share our story.

Thank you!

Haidi

1-12-04

12-27-05