Has anyone ahd a child out grow ?

[Guest guest]

I have read a lot about children with and treatment with surgery

and steroids I am wondering has anyone really just out grown this

syndrome I keep waiting for the day my son won't get the fevers

anymore and I am begining to think it is not going to happen He now

has had a fever for 8 days and the doctor has him on antibiotics for a

throat infection He has never had inflamed tonsils in the past but is

it typical for new symptoms to appear after over 3 years of just

fevers? He is also complaining of stomach pain that he sometimes gets

with a fever episode but not all the time? I am worried because he

already suffers a lot with just the fevers. I would appreciate any

imput

Thank you

Amy (Mom to Riley 4 with since 9 months old)

[Guest guest]

It seems like you don't hear a lot about teenagers or adults with .

has only had one episode in the past year and he is just turning 13. He is not

on any medication and has had no surgeries. Is he outgrowing ...? Time

will tell.

Cheri

[Guest guest]

My Child has grown out of .

We live in England. My son Darren has indeed grown out of . he

is now nearly 18 years old and hasnt had a fever attack for about 5

years.

My daughter 19 also suffers with and hasnt grown out of

them. In fact after a 'mild' couple of years she has suffered 3 fever

attacks in the last 2 months. Not good when shes trying to hold down

a job.

I myself have suffered with . I am 49 years old and when I used

to have bad fever attacks no one knew what it was. I have taken the

antibiotic drug oxytetracycline, originally prescribed for acne,

every day for over 25 years and it stops me getting the fevers.

Oxytetracycline can only be taken when children have fully grown as

it affects growing bones and teeth. took it aged 15 for 18

months but to my surprise it didnt stop her fevers.

I have given up with hospitals at the moment and am finding this

group more informative than most doctors in this country. The doctor

we saw for 10 years predicted that my children would grow out of it.

My son has. My daughter hasnt. Mine is being controlled with

antibiotics. So who knows?

Lee 49

father to 19 and Darren 17

All with recurring fevers

England

[Guest guest]

,

Myself and my children attended the 'world famous' Great Ormond Street

childrens hospital in London for 10 years. Im which time we had lots of

blood taken with all sorts of genetic tests. Our DNA has been frozen.

Our doctor boldly declared that he would isolate the gene that caused

it and cure it! however, he never did.

In the UK the doctors dont keep us so well informed and are way behind

the US. I dont know what sorts of genetic tests were done but everytime

something new was discoverd eg: TRAPS we never had it.

We havent been to hospital for 2 years because my son has stopped

having the attacks and at the time my daughters were mild and

infrequent and they never cured us anyway!

If my daughter starts having more attacks, she we try another course of

oxytetracycline. If that doesnt work we will have to see a doctor on an

adult basis. This time I will print everything off from this group and

hand it to him.

Lee 49

father to 19 and Darren 17

all with recurring fever

England

[Guest guest]

Lee, thought you would be interested in knowing that my family has more than one

person diagnosed with a fever disorder...my mom, age 70, was sick her whole

childhood and into her twenties. All those years no one knew what was wrong

with her. About 8 years ago she was diagnosed with FMF. And now...my 12 year

old son...diagnosed 2 years ago with . My son's ID doctor finds their

cases very interesting and said they were not typical in how their symptoms

present.

Anyways...I haven't read too many other posts of families with more than one

member with a PFS. Sure wish somebody would figure things out!

Cheri, mom to almost 13