and vomiting

[Guest guest]

during the last three apisodes Hili begun vomitting. once it was

only one time, but the last one it was a few times. she knew it was

coming, and after that she was okay, not like when you vomitt when

your tummy is wrong. I feel that her episodes keep changing, when I

found this group a few month ago, it ensured me that she really does

have , and it is okay to give her the steroids whenever I think

it is . but then, the episodes changed a bit. before she had

only fever, than throat pain was added. than sores in the mouth. the

last few times, vomitting, as I mentioned before. and also she

complained about neck pain. not throat, specifically neck. she also

streched her muscles in the neck before an episode. I fell so

helpless about it. another thing is that the breaks between episodes

are getting so short. 11 days, and last time it came back after 4

days. I thought that maybe it is something in the throat, my PD was

sure, but sure enough it came ack negative.

from what I read here I saw that other parents witnessed change of

symptoms.

I wish they could find out why it happens and a way to stop it.

Gali

mother of Hili 4 ()

Aviv 12 (had )

ohad 9

ofri 6 month

-- In , Bombardier <petish44@y...>

wrote:

>

> Hello Ellyn and Don! Also unfortunately, nausea and vomiting and

severe abdominal pain are also very common symptoms of the whole FMF

experience as well! Unless your child has gone through the genetic

testing to eliminate the possibility of one of those disorders, it

can be difficult to differentiate between an episode or something

else.

> Also, I hope that people aren't thinking that success with

prednisone to abort an episode means that your child has

instead of one of the genetic disorders. I have discussed using it

with Dr. Kastner at NIH for my son and Dr. K was all for it as a

possibility to help with episodes. The only reason we didn't try it

was because my local pediatrician was so strongly against using

it.

> It is not difficult for us to know when it is an episode

or " something else " . PJ has never had the flu, has had a cold maybe

once in his life, has never had strep. Ther only history he has

other than the episodes is frequent ear infections as a toddler and

ear tubes eliminated those at 18 months.

>

> Pat, mom to PJ, clinical FMF, now a whopping 13 years old!

>

>

> ---------------------------------

> DSL Something to write home about. Just $16.99/mo. or less

>

>

[Guest guest]

My 3 year old daughter Madison also has these vomiting incidents - and she too

can tell when shes going to throw up. She usually gets them at the beg of the

cycle. Then the swollen lymp nodes and glands, sore red throat and those

horrible sores in her mouth, lips and esphogus. She usually won't eat for a few

days.

With Madison she does not always get the fever thou - I thought that strange.

But ID at Bostons Childrens Hospitals says it is syndrome and she now

takes 3 teaspoons at the onset of fever or sorethroat and the sores in her

mouth. I was reading how having the tonsils removed has helped alot of

children. I am considering that for her too.

I am very glad this group is here - its so frustating and so many times I feel

so helpless . I have a great pedi , but Im sure you all hear the same things I

do " oh- Madison is sick again " I hate that, or when people ask me whats shes

eating. Oh I wish I could just give her some carrots and it would all go away

Have a nice night everyone

Cheryl

galibenor <gali@...> wrote:

during the last three apisodes Hili begun vomitting. once it was

only one time, but the last one it was a few times. she knew it was

coming, and after that she was okay, not like when you vomitt when

your tummy is wrong. I feel that her episodes keep changing, when I

found this group a few month ago, it ensured me that she really does

have , and it is okay to give her the steroids whenever I think

it is . but then, the episodes changed a bit. before she had

only fever, than throat pain was added. than sores in the mouth. the

last few times, vomitting, as I mentioned before. and also she

complained about neck pain. not throat, specifically neck. she also

streched her muscles in the neck before an episode. I fell so

helpless about it. another thing is that the breaks between episodes

are getting so short. 11 days, and last time it came back after 4

days. I thought that maybe it is something in the throat, my PD was

sure, but sure enough it came ack negative.

from what I read here I saw that other parents witnessed change of

symptoms.

I wish they could find out why it happens and a way to stop it.

Gali

mother of Hili 4 ()

Aviv 12 (had )

ohad 9

ofri 6 month

-- In , Bombardier <petish44@y...>

wrote:

>

> Hello Ellyn and Don! Also unfortunately, nausea and vomiting and

severe abdominal pain are also very common symptoms of the whole FMF

experience as well! Unless your child has gone through the genetic

testing to eliminate the possibility of one of those disorders, it

can be difficult to differentiate between an episode or something

else.

> Also, I hope that people aren't thinking that success with

prednisone to abort an episode means that your child has

instead of one of the genetic disorders. I have discussed using it

with Dr. Kastner at NIH for my son and Dr. K was all for it as a

possibility to help with episodes. The only reason we didn't try it

was because my local pediatrician was so strongly against using

it.

> It is not difficult for us to know when it is an episode

or " something else " . PJ has never had the flu, has had a cold maybe

once in his life, has never had strep. Ther only history he has

other than the episodes is frequent ear infections as a toddler and

ear tubes eliminated those at 18 months.

>

> Pat, mom to PJ, clinical FMF, now a whopping 13 years old!

>

>

> ---------------------------------

> DSL Something to write home about. Just $16.99/mo. or less

>

>