mother of 33 yr old son with for 20 yrs

[Guest guest]

Gasp! I think everyone on this board's heart just skipped beat! I know of at

least another mom on here with a 25yr old with , so you are not alone.

It's really hard to say how long this problem can last, there is just not enough

data to " prove " it goes away. My heart really goes out to your son. It just

goes to show, a mom's worry over her children never goes away, whether it be

their fevering baby or their fevering adult child. I just cannot imagine how

hard this has been on you and your son. Have you gone through the genetic

testing? Does your son have his tonsils still? So frustrating that as an adult

he cannot find help! I know even as children with this affliction, it is hard

enough to find a doctor who understands . You son's job is twice as hard!

[Guest guest]

Hi ,

Wow! I'm sure that you must be so frustrated. I just wanted to let you know that

I also live in Saint sburg.I had my son to All Children's every month and I

was told every time that it was just viral. My pediatrician was the one to

finally diagnose him.He is very well educated with regards to .I was so

frustrated with All Children's.I will be happy to give you more informationon

the pediatrician-even though your son is 33 it might be helpful to talk with a

doctor that is aware of the disease and can answer all of your questions.I have

asked numerous questions and he is always able to answer them.My son is not the

only child in his practice with .Good luck and let me know if I can help.

Cari-mom to Emory 3

St. Pete, Fl,

[Guest guest]

Hi . What a battle you have had to go through with your son!!

At any point was a T & A suggested? My daughter is 3 and had one just

2 weeks ago, I'm praying that is the answer. You mentioned about the

steriods showing up later, in what way has this affected your son?

My daughter was taking them for just over a year to help control her

temperature, I've always hated having to use them but as she's

allergic to motrin my options have been limited. Trust me to have a

kid with high temps who's allergic to the temp medicine!!!

I joined this group just a couple of months ago and it has been

amazing, lots of great advice, plus it's great to know I'm not on my

own with this. I'm sure you will find it extremly helpful.

Sally, mum to Beth aged 3 (T & A 06.19.08 fever free since 06.03.08)

[Guest guest]

Hello ,

I also live in the Tampa Bay area and my son was diagnosed with

at All Children's in St. Pete. We saw Dr. Dumois, part of an

infectious disease team there. He seemed to know a lot about .

You may want to see him or someone else in that practice.

in Tampa

[Guest guest]

Hi, this is , the mother of 33yr old. Yes, had his

tonsils and adnoids out when he was 3 because of his infections

before the . We never had a genetic test, what would this entail

or what would this show? I received an email from the mother you are

referring to and I am going to email her back. She lives in the same

area I do and I hope she can refer me to the Dr. she used who is more

versed on this condition.(i am still trying to figure out how to make

sure my emails are posted so everyone can read them. I don't

understand the website)

[Guest guest]

is at All Children's right now for the first time in 8 yrs.

Please do tell me the name of your pediatrician. He just called and

they are running blood tests and a chest xray. They did test for

sarcodoisi and other mediteranean ? fever also parasites, many years

ago. I don't know if they tested for lymes disease. When he was not

in cycle his blood work was great. when he had high fevers 106, he

only showed a high sed rate and either high or low red or white blood

count. That was all the tests showed.

[Guest guest]

Hello. the predisone affects the joints. The doctor always told us

that the time off the predisone was more important than the time on.

He was correct. The would always rebound when went off

the med. Your daughter is problably fine. He was on it monthly for

a few days for many years. We called All Children's to see if they

would consider seeing since they have his records. They

amazingly said yes. He is there now and just called me telling me

that they know alot more about it. Regreatably they said it is

genetic and the possibilty that his 2 yr old daughter may have it is

99%. They are testing him for Mediterranean Fever again and doing

other test to see which type he has. Apparently there are several

types. The test will not be back for a few months.

[Guest guest]

Hello. the predisone affects the joints. The doctor always told us

that the time off the predisone was more important than the time on.

He was correct. The would always rebound when went off

the med. Your daughter is problably fine. He was on it monthly for

a few days for many years. We called All Children's to see if they

would consider seeing since they have his records. They

amazingly said yes. He is there now and just called me telling me

that they know alot more about it. Regreatably they said it is

genetic and the possibilty that his 2 yr old daughter may have it is

99%. They are testing him for Mediterranean Fever again and doing

other test to see which type he has. Apparently there are several

types. The test will not be back for a few months.

[Guest guest]

Hello. the predisone affects the joints. The doctor always told us

that the time off the predisone was more important than the time on.

He was correct. The would always rebound when went off

the med. Your daughter is problably fine. He was on it monthly for

a few days for many years. We called All Children's to see if they

would consider seeing since they have his records. They

amazingly said yes. He is there now and just called me telling me

that they know alot more about it. Regreatably they said it is

genetic and the possibilty that his 2 yr old daughter may have it is

99%. They are testing him for Mediterranean Fever again and doing

other test to see which type he has. Apparently there are several

types. The test will not be back for a few months.

[Guest guest]

Update...... just called me from All Childrens..they are

testing him again for what type of PFAPF Mediterran or such. They

know more about it and said it is genetic and the chances of his 2yr

old daughter having it is 99%. I question this. We know of no one

on either side of the family with these symptoms. I will update.

the results will take months.

[Guest guest]

Update...... just called me from All Childrens..they are

testing him again for what type of PFAPF Mediterran or such. They

know more about it and said it is genetic and the chances of his 2yr

old daughter having it is 99%. I question this. We know of no one

on either side of the family with these symptoms. I will update.

the results will take months.

[Guest guest]

Update...... just called me from All Childrens..they are

testing him again for what type of PFAPF Mediterran or such. They

know more about it and said it is genetic and the chances of his 2yr

old daughter having it is 99%. I question this. We know of no one

on either side of the family with these symptoms. I will update.

the results will take months.

[Guest guest]

,

I have three children 6, 3 and 2. None of them have any signs of . My

oldest has moderate eczema though.

[Guest guest]

,

I have three children 6, 3 and 2. None of them have any signs of . My

oldest has moderate eczema though.

[Guest guest]

,

I have three children 6, 3 and 2. None of them have any signs of . My

oldest has moderate eczema though.

[Guest guest]

Hello ,

My daughter is going through the same. She is now 13. She started at18

months and fevered until she was 8. We then had a nice break until

this year. We had to take her to the ER in March because the episode

was massive. Full blown with mouth ulcers, 105 fever and this one came

with pain in her arms, legs, and back. I told the doctor that she was

diagnosed with by New York Presbyterian, pediatric ID when she

was 8. That stupid doctor... excuse me..... tested her for flu and

strept. When those came back neg, she then told me that it was not

but a virus. A $1000 visit for a dose of Advil. This doctor is

knows about and told me that it was rare. Like she did not

believe me.

Anyway, You finally gave me some insight on what may come for her. Her

episodes are now mild and far between. But she missed the last 3 months

of 7th grade this year.

People just don't understand. Did your son have any other symptoms?

Since the episodes returned, she struggles with pain. We are at a loss

with her.

Thanks for your story. Ive been trying to find someone with a child

that is dealing with this at an older age.

Marcie

[Guest guest]

Hello ,

My daughter is going through the same. She is now 13. She started at18

months and fevered until she was 8. We then had a nice break until

this year. We had to take her to the ER in March because the episode

was massive. Full blown with mouth ulcers, 105 fever and this one came

with pain in her arms, legs, and back. I told the doctor that she was

diagnosed with by New York Presbyterian, pediatric ID when she

was 8. That stupid doctor... excuse me..... tested her for flu and

strept. When those came back neg, she then told me that it was not

but a virus. A $1000 visit for a dose of Advil. This doctor is

knows about and told me that it was rare. Like she did not

believe me.

Anyway, You finally gave me some insight on what may come for her. Her

episodes are now mild and far between. But she missed the last 3 months

of 7th grade this year.

People just don't understand. Did your son have any other symptoms?

Since the episodes returned, she struggles with pain. We are at a loss

with her.

Thanks for your story. Ive been trying to find someone with a child

that is dealing with this at an older age.

Marcie

[Guest guest]

Hello ,

My daughter is going through the same. She is now 13. She started at18

months and fevered until she was 8. We then had a nice break until

this year. We had to take her to the ER in March because the episode

was massive. Full blown with mouth ulcers, 105 fever and this one came

with pain in her arms, legs, and back. I told the doctor that she was

diagnosed with by New York Presbyterian, pediatric ID when she

was 8. That stupid doctor... excuse me..... tested her for flu and

strept. When those came back neg, she then told me that it was not

but a virus. A $1000 visit for a dose of Advil. This doctor is

knows about and told me that it was rare. Like she did not

believe me.

Anyway, You finally gave me some insight on what may come for her. Her

episodes are now mild and far between. But she missed the last 3 months

of 7th grade this year.

People just don't understand. Did your son have any other symptoms?

Since the episodes returned, she struggles with pain. We are at a loss

with her.

Thanks for your story. Ive been trying to find someone with a child

that is dealing with this at an older age.

Marcie

[Guest guest]

Thank you , went yesterday with his wife. I don't know

the name of the doctor but he seemed versed in PFAPH. They brought

up his files from 8 yrs ago. The doctor told them that more info is

available now and did genetic testing on him for different typed of

. I didn't know there was a variety. To the best of my

knowledge, no one in either side of his family had this and if the

tests come back genetically positive, his 2 yr old daughter has a

strong chance of it. There are other adults out there and it is

reaccuring through out their lives . is back on predisone but

in smaller doses. Yesterday he was very sick with 104 fever, today

running around like a tiger. His employer is having a hard time

understanding all this. I hope he can keep his job with insurance.

[Guest guest]

Thank you , went yesterday with his wife. I don't know

the name of the doctor but he seemed versed in PFAPH. They brought

up his files from 8 yrs ago. The doctor told them that more info is

available now and did genetic testing on him for different typed of

. I didn't know there was a variety. To the best of my

knowledge, no one in either side of his family had this and if the

tests come back genetically positive, his 2 yr old daughter has a

strong chance of it. There are other adults out there and it is

reaccuring through out their lives . is back on predisone but

in smaller doses. Yesterday he was very sick with 104 fever, today

running around like a tiger. His employer is having a hard time

understanding all this. I hope he can keep his job with insurance.

[Guest guest]

Thank you , went yesterday with his wife. I don't know

the name of the doctor but he seemed versed in PFAPH. They brought

up his files from 8 yrs ago. The doctor told them that more info is

available now and did genetic testing on him for different typed of

. I didn't know there was a variety. To the best of my

knowledge, no one in either side of his family had this and if the

tests come back genetically positive, his 2 yr old daughter has a

strong chance of it. There are other adults out there and it is

reaccuring through out their lives . is back on predisone but

in smaller doses. Yesterday he was very sick with 104 fever, today

running around like a tiger. His employer is having a hard time

understanding all this. I hope he can keep his job with insurance.

[Guest guest]

I emailed that everyone will have this the rest of their lives but I

meant that will have it on and off all his life. Unless they

find something for this!!! ( atleast that is what the doctor told him)

[Guest guest]

Hi

There is only one kind of but various types of periodic fever syndromes

(PFS). If they are doing genetic testing it will be to rule out genetic PFSs.

is not genetic (as far as they know) so it's a diagnosis of exclusion.

Test for the genetic disorders and then assume it's if they all come back

negative.

Hope this helps

Take care

Inga

[Guest guest]

Hi

There is only one kind of but various types of periodic fever syndromes

(PFS). If they are doing genetic testing it will be to rule out genetic PFSs.

is not genetic (as far as they know) so it's a diagnosis of exclusion.

Test for the genetic disorders and then assume it's if they all come back

negative.

Hope this helps

Take care

Inga

[Guest guest]

Thank you Inga. I need to explain that to . His wife went

with him. ( this is a good thing ) and I am getting info second hand.

Thanks to this web site , I am learning more. I can't believe I have

someone to share with. WOW , this is great!