Re: Naproxen - no luck w/ T&A

[Guest guest]

Hi Michele,

I am sorry to hear the T & A did not help . I remember it was

hard for you to get the procedures done because he had episodes start

and the appointments had to be rescheduled. I am glad to hear the

Naproxen is helping his episodes. It is still helping my Tyler. He

has had a few skipped episodes since he has started it...with his

fevers normally every 2 weeks it is a nice change.

We were able to get approval for the DNA testing for FMF, Muckle-

Wells, NOMID syndromes. We are waiting for the results now.

Best Wishes,

Pruden

mother to Tyler 20 months - undetermined PFS

Northern California

>

> Hi,

>

> My son was found to have 1 mutation for FMF. We did the T & A in June

> and he is still fevering unfortunately. Cimetidine worked for about

1

> year. Naproxen is our new best friend. It is a 12 hour med. You

cannot

> give motrin while your child has Naproxen in their system. If a

fever

> starts within the 12 hour period you can only give Tylenol. Our son

> does fever within the 12 hour period but it cuts the number of days

he

> fevers to more than half. He still may not feel 100% but by the 2nd

> day he is more functional. His appetite and general feeling will be

> poor for several days after but at least we're not medicating as

much.

> It is definetly worth looking into. Naproxen has the same active

> ingredient that is in Aleve. He also just started colchicine. Hugs

and

> strength to everyone. Especially as we approach a new school year.

>

> Michele

> Mother to (age 6)and Tyler (age 4)

>

[Guest guest]

Missy,

Great to hear from you. So happy to hear you got the genetic testing

done for Tyler! Please keep me posted. is due for a fever

right now and we've got our fingers crossed with him using

colchicine. At least we know we can count on Naproxen! He has been

fevering every 3rd week. From one coast to another, and all around

the world, I know we're all in this together. Thanks again for

caring and remembering us.

Michele

Mother to w/FMF

Virginia

> >

> > Hi,

> >

> > My son was found to have 1 mutation for FMF. We did the T & A in

June

> > and he is still fevering unfortunately. Cimetidine worked for

about

> 1

> > year. Naproxen is our new best friend. It is a 12 hour med. You

> cannot

> > give motrin while your child has Naproxen in their system. If a

> fever

> > starts within the 12 hour period you can only give Tylenol. Our

son

> > does fever within the 12 hour period but it cuts the number of

days

> he

> > fevers to more than half. He still may not feel 100% but by the

2nd

> > day he is more functional. His appetite and general feeling will

be

> > poor for several days after but at least we're not medicating as

> much.

> > It is definetly worth looking into. Naproxen has the same active

> > ingredient that is in Aleve. He also just started colchicine.

Hugs

> and

> > strength to everyone. Especially as we approach a new school

year.

> >

> > Michele

> > Mother to (age 6)and Tyler (age 4)

> >

>