For Eva

August 31, 2006

Hi Eva, my name is Cheri and you asked if anyone else

had a child who was older, when diagonsed with .

My son is 11 years old. We were told just

recently that he has . His fevers started about

6 months ago. I have been very curious too, as to how

many other members have children who were older when

they started getting fevers. So many families have a

child who was 2 months old-5 years old when their

fevers started... seemed out of place. What are

your son's symptons? Also, s fevers don't seem to

fit a pattern (YET). Cheri in CA

--- Jeff <evakirstie@...> wrote:

> Hi, My son seemed to be older too when he started.

> He

> started when he was 6. He is 7 1/2 now. He will

> have

> fevers every 2 weeks but most of the time they are

> all

> over the place. Just keep that fever log for the

> doc's. My I.D. doc said he fit all the profiles of

> but is hesitant to diagnose him because he was

> so old when he started levering. I would also like

> to

> know if anyones child started later on. Eva

>

> --- Cheri Payton <mycheribaby@...> wrote:

>

> > Hi ,

> >

> > Thanks for your reply. sent a few words to

> > Josh...hope he gets it. Are you guys from CA? If

> > so...where? We live in Galt, CA. Just south of

> > Sacramento. Did you mention that Josh was

> > diagnosised

> > with FMF? or ? I'm having a hard time

> > remembering everyones different stories. I'm

> > feeling

> > overjoyed at learning so much from others and

> being

> > able to connect with others going through the same

> > thing I am, but at the same time I feel a little

> > over

> > whelmed too. I don't understand why 's

> fevers

> > are not like clock work...he has only had 6

> episodes

> > so far...the first two were 11 days apart...then

> > 75,19,20,64...do you see any kind of pattern? I'm

> > really confused...he's older than anyone else(when

> > he

> > started his fever's) and there doesn't seem to be

> a

> > pattern of his fever's. Yet...All his symptons

> > match

> > the other kids who have . Maybe it's to

> early

> > to

> > try to figure things out. I need to be patient

> and

> > keep researching. Sorry for unloading. Cheri

> >

> > --- & <bgatesjr@...> wrote:

> >

> > > Hi Cheri,

> > > Josh will be 8 in Oct. We just made a decision

> to

> > > try pred. his next episode. Our ID is VERY

> leery

> > so

> > > we will take him in to make sure he isn't just

> > > " sick " . As far as school and fevers go...our

> dr.

> > > said same thing that maybe it's stress, but we

> > have

> > > been charting since before he started school and

> > the

> > > pattern was the same so, who knows. We have not

> > > been to NIH yet. We were told it was going to

> > take

> > > about 1 yr. We've already dealt with it this

> long

> > > and it doesn't seem that he's " out-growing it "

> > > (we've heard that since he was 3, lol) so we'll

> > > wait. Depending on the next few months and how

> > > things go with the pred, we are scheduled for

> > > tonsillectomy in December. Done some reading

> > > from...Israel researchers, but of course our

> dr's

> > > are not for it, said same as yours. Anyways,

> good

> > > to hear from someone with same symptoms. Thanks

> > for

> > > responding.

> > > , Josh SD, CA

> > > RE: Fever free for 5 and a

> > half

> > > months

> > > >

> > > > Us too! PJ usually stops fevering in late

> May,

> > > early June and the

> > > episodes resume in mid-September. Weird, huh?

> > This

> > > has been his

> > > pattern for the past several years.

> > > >

> > > > Pat, mom to PJ, 13yo, clinical FMF

> > > >

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

> > > > Get your own web address for just $1.99/1st

> > yr.

> > > We'll help.

> > > Small Business.

> > > >

> > > > [Non-text portions of this message have been

> > > removed]

> > > >

> > > > [Non-text portions of this message have been

> > > removed]

> > > >

> > >

> > > [Non-text portions of this message have been

> > > removed]

> > >

> >

> > __________________________________________________

> >

September 1, 2006

Cheri, my son can feel the fevers coming on the day

before they start. He will tell me tomorrow when I

wake up I'll be sick. The last fever he had he had 2

sores in his mouth. They looked like clear blisters on

the inner bottom lip. He said they really didn't hurt

though. They were just smaller than a grape nut. His

glands sometimes get swollen and hurt. He also gets

headaches with the fevers. I don't think you can

consider him to have a pattern either. But I heard not

all ers have a pattern. Eva

--- Cheri Payton <mycheribaby@...> wrote:

> Hi Eva, my name is Cheri and you asked if anyone

> else

> had a child who was older, when diagonsed with

> .

> My son is 11 years old. We were told just

> recently that he has . His fevers started

> about

> 6 months ago. I have been very curious too, as to

> how

> many other members have children who were older when

> they started getting fevers. So many families have

> a

> child who was 2 months old-5 years old when their

> fevers started... seemed out of place. What

> are

> your son's symptons? Also, s fevers don't seem

> to

> fit a pattern (YET). Cheri in CA

>

> --- Jeff <evakirstie@...> wrote:

>

> > Hi, My son seemed to be older too when he started.

> > He

> > started when he was 6. He is 7 1/2 now. He will

> > have

> > fevers every 2 weeks but most of the time they are

> > all

> > over the place. Just keep that fever log for the

> > doc's. My I.D. doc said he fit all the profiles of

> > but is hesitant to diagnose him because he

> was

> > so old when he started levering. I would also like

> > to

> > know if anyones child started later on. Eva

> >

> > --- Cheri Payton <mycheribaby@...> wrote:

> >

> > > Hi ,

> > >

> > > Thanks for your reply. sent a few words to

> > > Josh...hope he gets it. Are you guys from CA?

> If

> > > so...where? We live in Galt, CA. Just south of

> > > Sacramento. Did you mention that Josh was

> > > diagnosised

> > > with FMF? or ? I'm having a hard time

> > > remembering everyones different stories. I'm

> > > feeling

> > > overjoyed at learning so much from others and

> > being

> > > able to connect with others going through the

> same

> > > thing I am, but at the same time I feel a little

> > > over

> > > whelmed too. I don't understand why 's

> > fevers

> > > are not like clock work...he has only had 6

> > episodes

> > > so far...the first two were 11 days apart...then

> > > 75,19,20,64...do you see any kind of pattern?

> I'm

> > > really confused...he's older than anyone

> else(when

> > > he

> > > started his fever's) and there doesn't seem to

> be

> > a

> > > pattern of his fever's. Yet...All his symptons

> > > match

> > > the other kids who have . Maybe it's to

> > early

> > > to

> > > try to figure things out. I need to be patient

> > and

> > > keep researching. Sorry for unloading. Cheri

> > >

> > > --- & <bgatesjr@...> wrote:

> > >

> > > > Hi Cheri,

> > > > Josh will be 8 in Oct. We just made a

> decision

> > to

> > > > try pred. his next episode. Our ID is VERY

> > leery

> > > so

> > > > we will take him in to make sure he isn't just

> > > > " sick " . As far as school and fevers go...our

> > dr.

> > > > said same thing that maybe it's stress, but we

> > > have

> > > > been charting since before he started school

> and

> > > the

> > > > pattern was the same so, who knows. We have

> not

> > > > been to NIH yet. We were told it was going to

> > > take

> > > > about 1 yr. We've already dealt with it this

> > long

> > > > and it doesn't seem that he's " out-growing it "

> > > > (we've heard that since he was 3, lol) so

> we'll

> > > > wait. Depending on the next few months and

> how

> > > > things go with the pred, we are scheduled for

> > > > tonsillectomy in December. Done some reading

> > > > from...Israel researchers, but of course our

> > dr's

> > > > are not for it, said same as yours. Anyways,

> > good

> > > > to hear from someone with same symptoms.

> Thanks

> > > for

> > > > responding.

> > > > , Josh SD, CA

> > > > RE: Fever free for 5 and

> a

> > > half

> > > > months

> > > > >

> > > > > Us too! PJ usually stops fevering in late

> > May,

> > > > early June and the

> > > > episodes resume in mid-September. Weird,

> huh?

> > > This

> > > > has been his

> > > > pattern for the past several years.

> > > > >

> > > > > Pat, mom to PJ, 13yo, clinical FMF

> > > > >

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

> > > > > Get your own web address for just

> $1.99/1st

> > > yr.

> > > > We'll help.

> > > > Small Business.

> > > > >

> > > > > [Non-text portions of this message have

> been

> > > > removed]

> > > > >

>

=== message truncated ===

__________________________________________________

September 1, 2006

Eva, I forgot to mention that also gets very,

very swollen lymph nodes during an episode. When we

don't give him prednisone, within a couple of days his

neck and throat are so swollen. In May, when he had

two episodes, two weeks apart (that was the only time

they were that close together) he was soooo sick. He

barely got over one and then started another. By the

end of his second episode, His throat was so swollen

that just drinking water, taking his temp. (orally)

and even swollowing his saliva...made him gag. That

is when we started really worring, because the main

thing we tried to keep up with was getting him to

drink plenty of fluids, and now he couldn't even do

that. We ended up taking him to the doctors...they

started an I.V. and gave him a drug (similar to

Prednisone , to shrink the swelling in his throat)

within minutes, he was feeling better, and by that

night he was eating again. That was the ID doctors

real clue that maybe had , because of his

dramatic response to the medication. Prednisone has

worked very well for him so far. Time will tell.

Cheri, s mom

--- Jeff <evakirstie@...> wrote:

> Cheri, my son can feel the fevers coming on the day

> before they start. He will tell me tomorrow when I

> wake up I'll be sick. The last fever he had he had 2

> sores in his mouth. They looked like clear blisters

> on

> the inner bottom lip. He said they really didn't

> hurt

> though. They were just smaller than a grape nut. His

> glands sometimes get swollen and hurt. He also gets

> headaches with the fevers. I don't think you can

> consider him to have a pattern either. But I heard

> not

> all ers have a pattern. Eva

>

> --- Cheri Payton <mycheribaby@...> wrote:

>

> > Hi Eva, my name is Cheri and you asked if anyone

> > else

> > had a child who was older, when diagonsed with

> > .

> > My son is 11 years old. We were told just

> > recently that he has . His fevers started

> > about

> > 6 months ago. I have been very curious too, as to

> > how

> > many other members have children who were older

> when

> > they started getting fevers. So many families

> have

> > a

> > child who was 2 months old-5 years old when their

> > fevers started... seemed out of place. What

> > are

> > your son's symptons? Also, s fevers don't

> seem

> > to

> > fit a pattern (YET). Cheri in CA

> >

> > --- Jeff <evakirstie@...> wrote:

> >

> > > Hi, My son seemed to be older too when he

> started.

> > > He

> > > started when he was 6. He is 7 1/2 now. He will

> > > have

> > > fevers every 2 weeks but most of the time they

> are

> > > all

> > > over the place. Just keep that fever log for the

> > > doc's. My I.D. doc said he fit all the profiles

> of

> > > but is hesitant to diagnose him because he

> > was

> > > so old when he started levering. I would also

> like

> > > to

> > > know if anyones child started later on. Eva

> > >

> > > --- Cheri Payton <mycheribaby@...> wrote:

> > >

> > > > Hi ,

> > > >

> > > > Thanks for your reply. sent a few words

> to

> > > > Josh...hope he gets it. Are you guys from CA?

>

> > If

> > > > so...where? We live in Galt, CA. Just south

> of

> > > > Sacramento. Did you mention that Josh was

> > > > diagnosised

> > > > with FMF? or ? I'm having a hard time

> > > > remembering everyones different stories. I'm

> > > > feeling

> > > > overjoyed at learning so much from others and

> > > being

> > > > able to connect with others going through the

> > same

> > > > thing I am, but at the same time I feel a

> little

> > > > over

> > > > whelmed too. I don't understand why 's

> > > fevers

> > > > are not like clock work...he has only had 6

> > > episodes

> > > > so far...the first two were 11 days

> apart...then

> > > > 75,19,20,64...do you see any kind of pattern?

> > I'm

> > > > really confused...he's older than anyone

> > else(when

> > > > he

> > > > started his fever's) and there doesn't seem to

> > be

> > > a

> > > > pattern of his fever's. Yet...All his

> symptons

> > > > match

> > > > the other kids who have . Maybe it's to

> > > early

> > > > to

> > > > try to figure things out. I need to be

> patient

> > > and

> > > > keep researching. Sorry for unloading. Cheri

> > > >

> > > > --- & <bgatesjr@...>

> wrote:

> > > >

> > > > > Hi Cheri,

> > > > > Josh will be 8 in Oct. We just made a

> > decision

> > > to

> > > > > try pred. his next episode. Our ID is VERY

> > > leery

> > > > so

> > > > > we will take him in to make sure he isn't

> just

> > > > > " sick " . As far as school and fevers

> go...our

> > > dr.

> > > > > said same thing that maybe it's stress, but

> we

> > > > have

> > > > > been charting since before he started school

> > and

> > > > the

> > > > > pattern was the same so, who knows. We have

> > not

> > > > > been to NIH yet. We were told it was going

> to

> > > > take

> > > > > about 1 yr. We've already dealt with it

> this

> > > long

> > > > > and it doesn't seem that he's " out-growing

> it "

> > > > > (we've heard that since he was 3, lol) so

> > we'll

> > > > > wait. Depending on the next few months and

> > how

> > > > > things go with the pred, we are scheduled

> for

> > > > > tonsillectomy in December. Done some

> reading

> > > > > from...Israel researchers, but of course our

> > > dr's

> > > > > are not for it, said same as yours.

> Anyways,

> > > good

> > > > > to hear from someone with same symptoms.

> > Thanks

> > > > for

> > > > > responding.

> > > > > , Josh SD, CA

> > > > > Re: Fever free for 5 and

> a

> > > half

> > > > > months

> > > > >

> > > > > --Hi Pat and , I just read that

> you

> > > > both

> > > > > have children who

> > > > > tend to take a break during the summer. My

> > son

> > > > > was just

> > > > > recently diagnosised with and we had

> a

> > > > very

> > > > > bad time the entire

> > > > > month of May and one episode in June. Then

> > he

> > > > > didn't get sick again

> > > > > until the middle of Aug. I've been reading

> > > that

> > > > a

> > > > > lot of kids tend to

> > > > > not get sick much in the summer. 's

> dr.

> > > > told

> > > > > me this was pretty

> > > > > typical. That once school started, the

> > fevers

> > > > > started back up again.

> > > > > Are either of your children on Prednisone?

> > > What

> > > > > are their ages?

> > > > > is 11. Thanks, Cheri- In

> > > > > , " &

> > > > > " <bgatesjr@...> wrote:

> > > > > >

> > > > > > Pat,

> > > > > > My son also, over the last 3 yrs stops

> > after

> > > > May

>

=== message truncated ===

__________________________________________________

September 5, 2006

Folic Acid works so well for mouth sores!!!

--- Cheri Payton <mycheribaby@...> wrote:

> Eva, I forgot to mention that also gets very,

> very swollen lymph nodes during an episode. When we

> don't give him prednisone, within a couple of days

> his

> neck and throat are so swollen. In May, when he had

> two episodes, two weeks apart (that was the only

> time

> they were that close together) he was soooo sick.

> He

> barely got over one and then started another. By

> the

> end of his second episode, His throat was so

> swollen

> that just drinking water, taking his temp. (orally)

> and even swollowing his saliva...made him gag. That

> is when we started really worring, because the main

> thing we tried to keep up with was getting him to

> drink plenty of fluids, and now he couldn't even do

> that. We ended up taking him to the doctors...they

> started an I.V. and gave him a drug (similar to

> Prednisone , to shrink the swelling in his throat)

> within minutes, he was feeling better, and by that

> night he was eating again. That was the ID doctors

> real clue that maybe had , because of his

> dramatic response to the medication. Prednisone has

> worked very well for him so far. Time will tell.

> Cheri, s mom

>

> --- Jeff <evakirstie@...> wrote:

>

> > Cheri, my son can feel the fevers coming on the

> day

> > before they start. He will tell me tomorrow when I

> > wake up I'll be sick. The last fever he had he had

> 2

> > sores in his mouth. They looked like clear

> blisters

> > on

> > the inner bottom lip. He said they really didn't

> > hurt

> > though. They were just smaller than a grape nut.

> His

> > glands sometimes get swollen and hurt. He also

> gets

> > headaches with the fevers. I don't think you can

> > consider him to have a pattern either. But I heard

> > not

> > all ers have a pattern. Eva

> >

> > --- Cheri Payton <mycheribaby@...> wrote:

> >

> > > Hi Eva, my name is Cheri and you asked if anyone

> > > else

> > > had a child who was older, when diagonsed with

> > > .

> > > My son is 11 years old. We were told just

> > > recently that he has . His fevers started

> > > about

> > > 6 months ago. I have been very curious too, as

> to

> > > how

> > > many other members have children who were older

> > when

> > > they started getting fevers. So many families

> > have

> > > a

> > > child who was 2 months old-5 years old when

> their

> > > fevers started... seemed out of place.

> What

> > > are

> > > your son's symptons? Also, s fevers don't

> > seem

> > > to

> > > fit a pattern (YET). Cheri in CA

> > >

> > > --- Jeff <evakirstie@...> wrote:

> > >

> > > > Hi, My son seemed to be older too when he

> > started.

> > > > He

> > > > started when he was 6. He is 7 1/2 now. He

> will

> > > > have

> > > > fevers every 2 weeks but most of the time they

> > are

> > > > all

> > > > over the place. Just keep that fever log for

> the

> > > > doc's. My I.D. doc said he fit all the

> profiles

> > of

> > > > but is hesitant to diagnose him because

> he

> > > was

> > > > so old when he started levering. I would also

> > like

> > > > to

> > > > know if anyones child started later on. Eva

> > > >

> > > > --- Cheri Payton <mycheribaby@...>

> wrote:

> > > >

> > > > > Hi ,

> > > > >

> > > > > Thanks for your reply. sent a few

> words

> > to

> > > > > Josh...hope he gets it. Are you guys from

> CA?

> >

> > > If

> > > > > so...where? We live in Galt, CA. Just

> south

> > of

> > > > > Sacramento. Did you mention that Josh was

> > > > > diagnosised

> > > > > with FMF? or ? I'm having a hard time

> > > > > remembering everyones different stories.

> I'm

> > > > > feeling

> > > > > overjoyed at learning so much from others

> and

> > > > being

> > > > > able to connect with others going through

> the

> > > same

> > > > > thing I am, but at the same time I feel a

> > little

> > > > > over

> > > > > whelmed too. I don't understand why 's

> > > > fevers

> > > > > are not like clock work...he has only had 6

> > > > episodes

> > > > > so far...the first two were 11 days

> > apart...then

> > > > > 75,19,20,64...do you see any kind of

> pattern?

> > > I'm

> > > > > really confused...he's older than anyone

> > > else(when

> > > > > he

> > > > > started his fever's) and there doesn't seem

> to

> > > be

> > > > a

> > > > > pattern of his fever's. Yet...All his

> > symptons

> > > > > match

> > > > > the other kids who have . Maybe it's

> to

> > > > early

> > > > > to

> > > > > try to figure things out. I need to be

> > patient

> > > > and

> > > > > keep researching. Sorry for unloading.

> Cheri

> > > > >

> > > > > --- & <bgatesjr@...>

> > wrote:

> > > > >

> > > > > > Hi Cheri,

> > > > > > Josh will be 8 in Oct. We just made a

> > > decision

> > > > to

> > > > > > try pred. his next episode. Our ID is

> VERY

> > > > leery

> > > > > so

> > > > > > we will take him in to make sure he isn't

> > just

> > > > > > " sick " . As far as school and fevers

> > go...our

> > > > dr.

> > > > > > said same thing that maybe it's stress,

> but

> > we

> > > > > have

> > > > > > been charting since before he started

> school

> > > and

> > > > > the

> > > > > > pattern was the same so, who knows. We

> have

> > > not

> > > > > > been to NIH yet. We were told it was

> going

> > to

> > > > > take

> > > > > > about 1 yr. We've already dealt with it

> > this

> > > > long

> > > > > > and it doesn't seem that he's " out-growing

> > it "

> > > > > > (we've heard that since he was 3, lol) so

> > > we'll

> > > > > > wait. Depending on the next few months

> and

> > > how

> > > > > > things go with the pred, we are scheduled

>

=== message truncated ===

__________________________________________________

September 5, 2006

Thanks, that's nice to know. My family all suffers

from canker sores and l-lysine works well too.

I'm having a rough night. My son just woke up

feeling really bad. He can feel the fever coming. I

feel so helpless. How can this be happening to us? I

guess the most frustrating part is that I have

realized we are not getting any real answers...EVER!

Sorry, I'm not always like this - its just on of those

nights. Eva

--- Lori Todaro <loritodaro@...> wrote:

> Folic Acid works so well for mouth sores!!!

>

> --- Cheri Payton <mycheribaby@...> wrote:

>

> > Eva, I forgot to mention that also gets

> very,

> > very swollen lymph nodes during an episode. When

> we

> > don't give him prednisone, within a couple of days

> > his

> > neck and throat are so swollen. In May, when he

> had

> > two episodes, two weeks apart (that was the only

> > time

> > they were that close together) he was soooo sick.

>

> > He

> > barely got over one and then started another. By

> > the

> > end of his second episode, His throat was so

> > swollen

> > that just drinking water, taking his temp.

> (orally)

> > and even swollowing his saliva...made him gag.

> That

> > is when we started really worring, because the

> main

> > thing we tried to keep up with was getting him to

> > drink plenty of fluids, and now he couldn't even

> do

> > that. We ended up taking him to the

> doctors...they

> > started an I.V. and gave him a drug (similar to

> > Prednisone , to shrink the swelling in his throat)

>

> > within minutes, he was feeling better, and by that

> > night he was eating again. That was the ID

> doctors

> > real clue that maybe had , because of

> his

> > dramatic response to the medication. Prednisone

> has

> > worked very well for him so far. Time will tell.

> > Cheri, s mom

> >

> > --- Jeff <evakirstie@...> wrote:

> >

> > > Cheri, my son can feel the fevers coming on the

> > day

> > > before they start. He will tell me tomorrow when

> I

> > > wake up I'll be sick. The last fever he had he

> had

> > 2

> > > sores in his mouth. They looked like clear

> > blisters

> > > on

> > > the inner bottom lip. He said they really didn't

> > > hurt

> > > though. They were just smaller than a grape nut.

> > His

> > > glands sometimes get swollen and hurt. He also

> > gets

> > > headaches with the fevers. I don't think you can

> > > consider him to have a pattern either. But I

> heard

> > > not

> > > all ers have a pattern. Eva

> > >

> > > --- Cheri Payton <mycheribaby@...> wrote:

> > >

> > > > Hi Eva, my name is Cheri and you asked if

> anyone

> > > > else

> > > > had a child who was older, when diagonsed with

> > > > .

> > > > My son is 11 years old. We were told

> just

> > > > recently that he has . His fevers

> started

> > > > about

> > > > 6 months ago. I have been very curious too,

> as

> > to

> > > > how

> > > > many other members have children who were

> older

> > > when

> > > > they started getting fevers. So many families

> > > have

> > > > a

> > > > child who was 2 months old-5 years old when

> > their

> > > > fevers started... seemed out of place.

> > What

> > > > are

> > > > your son's symptons? Also, s fevers don't

> > > seem

> > > > to

> > > > fit a pattern (YET). Cheri in CA

> > > >

> > > > --- Jeff <evakirstie@...> wrote:

> > > >

> > > > > Hi, My son seemed to be older too when he

> > > started.

> > > > > He

> > > > > started when he was 6. He is 7 1/2 now. He

> > will

> > > > > have

> > > > > fevers every 2 weeks but most of the time

> they

> > > are

> > > > > all

> > > > > over the place. Just keep that fever log for

> > the

> > > > > doc's. My I.D. doc said he fit all the

> > profiles

> > > of

> > > > > but is hesitant to diagnose him

> because

> > he

> > > > was

> > > > > so old when he started levering. I would

> also

> > > like

> > > > > to

> > > > > know if anyones child started later on. Eva

> > > > >

> > > > > --- Cheri Payton <mycheribaby@...>

> > wrote:

> > > > >

> > > > > > Hi ,

> > > > > >

> > > > > > Thanks for your reply. sent a few

> > words

> > > to

> > > > > > Josh...hope he gets it. Are you guys from

> > CA?

> > >

> > > > If

> > > > > > so...where? We live in Galt, CA. Just

> > south

> > > of

> > > > > > Sacramento. Did you mention that Josh was

> > > > > > diagnosised

> > > > > > with FMF? or ? I'm having a hard

> time

> > > > > > remembering everyones different stories.

> > I'm

> > > > > > feeling

> > > > > > overjoyed at learning so much from others

> > and

> > > > > being

> > > > > > able to connect with others going through

> > the

> > > > same

> > > > > > thing I am, but at the same time I feel a

> > > little

> > > > > > over

> > > > > > whelmed too. I don't understand why

> 's

> > > > > fevers

> > > > > > are not like clock work...he has only had

> 6

> > > > > episodes

> > > > > > so far...the first two were 11 days

> > > apart...then

> > > > > > 75,19,20,64...do you see any kind of

> > pattern?

> > > > I'm

> > > > > > really confused...he's older than anyone

> > > > else(when

> > > > > > he

> > > > > > started his fever's) and there doesn't

> seem

> > to

> > > > be

> > > > > a

> > > > > > pattern of his fever's. Yet...All his

> > > symptons

> > > > > > match

> > > > > > the other kids who have . Maybe it's

> > to

> > > > > early

> > > > > > to

> > > > > > try to figure things out. I need to be

> > > patient

> > > > > and

> > > > > > keep researching. Sorry for unloading.

> > Cheri

> > > > > >

> > > > > > --- & <bgatesjr@...>

> > > wrote:

> > > > > >

> > > > > > > Hi Cheri,

> > > > > > > Josh will be 8 in Oct. We just made a

> > > > decision

> > > > > to

> > > > > > > try pred. his next episode. Our ID is

> > VERY

> > > > > leery

>

=== message truncated ===

__________________________________________________

September 5, 2006

Sadly, we've all experienced those nights. I will keep

you in my prayers especially tonight. Topical

treatments and mouth rinses do help-sometimes, but

that's already once they've appeared and are sore. A

simple script froma doctor for folic acid will help

to reduce the occurence of the mouth sores all

together.

Good night and God Bless.

Lori Todaro

Mom to Nino, 8

--- Jeff <evakirstie@...> wrote:

> Thanks, that's nice to know. My family all suffers

> from canker sores and l-lysine works well too.

> I'm having a rough night. My son just woke up

> feeling really bad. He can feel the fever coming. I

> feel so helpless. How can this be happening to us? I

> guess the most frustrating part is that I have

> realized we are not getting any real answers...EVER!

>

> Sorry, I'm not always like this - its just on of

> those

> nights. Eva

>

> --- Lori Todaro <loritodaro@...> wrote:

>

> > Folic Acid works so well for mouth sores!!!

> >

> > --- Cheri Payton <mycheribaby@...> wrote:

> >

> > > Eva, I forgot to mention that also gets

> > very,

> > > very swollen lymph nodes during an episode.

> When

> > we

> > > don't give him prednisone, within a couple of

> days

> > > his

> > > neck and throat are so swollen. In May, when he

> > had

> > > two episodes, two weeks apart (that was the only

> > > time

> > > they were that close together) he was soooo

> sick.

> >

> > > He

> > > barely got over one and then started another.

> By

> > > the

> > > end of his second episode, His throat was so

> > > swollen

> > > that just drinking water, taking his temp.

> > (orally)

> > > and even swollowing his saliva...made him gag.

> > That

> > > is when we started really worring, because the

> > main

> > > thing we tried to keep up with was getting him

> to

> > > drink plenty of fluids, and now he couldn't even

> > do

> > > that. We ended up taking him to the

> > doctors...they

> > > started an I.V. and gave him a drug (similar to

> > > Prednisone , to shrink the swelling in his

> throat)

> >

> > > within minutes, he was feeling better, and by

> that

> > > night he was eating again. That was the ID

> > doctors

> > > real clue that maybe had , because of

> > his

> > > dramatic response to the medication. Prednisone

> > has

> > > worked very well for him so far. Time will

> tell.

> > > Cheri, s mom

> > >

> > > --- Jeff <evakirstie@...> wrote:

> > >

> > > > Cheri, my son can feel the fevers coming on

> the

> > > day

> > > > before they start. He will tell me tomorrow

> when

> > I

> > > > wake up I'll be sick. The last fever he had he

> > had

> > > 2

> > > > sores in his mouth. They looked like clear

> > > blisters

> > > > on

> > > > the inner bottom lip. He said they really

> didn't

> > > > hurt

> > > > though. They were just smaller than a grape

> nut.

> > > His

> > > > glands sometimes get swollen and hurt. He also

> > > gets

> > > > headaches with the fevers. I don't think you

> can

> > > > consider him to have a pattern either. But I

> > heard

> > > > not

> > > > all ers have a pattern. Eva

> > > >

> > > > --- Cheri Payton <mycheribaby@...>

> wrote:

> > > >

> > > > > Hi Eva, my name is Cheri and you asked if

> > anyone

> > > > > else

> > > > > had a child who was older, when diagonsed

> with

> > > > > .

> > > > > My son is 11 years old. We were told

> > just

> > > > > recently that he has . His fevers

> > started

> > > > > about

> > > > > 6 months ago. I have been very curious too,

> > as

> > > to

> > > > > how

> > > > > many other members have children who were

> > older

> > > > when

> > > > > they started getting fevers. So many

> families

> > > > have

> > > > > a

> > > > > child who was 2 months old-5 years old when

> > > their

> > > > > fevers started... seemed out of place.

> > > What

> > > > > are

> > > > > your son's symptons? Also, s fevers

> don't

> > > > seem

> > > > > to

> > > > > fit a pattern (YET). Cheri in CA

> > > > >

> > > > > --- Jeff <evakirstie@...> wrote:

> > > > >

> > > > > > Hi, My son seemed to be older too when he

> > > > started.

> > > > > > He

> > > > > > started when he was 6. He is 7 1/2 now.

> He

> > > will

> > > > > > have

> > > > > > fevers every 2 weeks but most of the time

> > they

> > > > are

> > > > > > all

> > > > > > over the place. Just keep that fever log

> for

> > > the

> > > > > > doc's. My I.D. doc said he fit all the

> > > profiles

> > > > of

> > > > > > but is hesitant to diagnose him

> > because

> > > he

> > > > > was

> > > > > > so old when he started levering. I would

> > also

> > > > like

> > > > > > to

> > > > > > know if anyones child started later on.

> Eva

> > > > > >

> > > > > > --- Cheri Payton <mycheribaby@...>

> > > wrote:

> > > > > >

> > > > > > > Hi ,

> > > > > > >

> > > > > > > Thanks for your reply. sent a few

> > > words

> > > > to

> > > > > > > Josh...hope he gets it. Are you guys

> from

> > > CA?

> > > >

> > > > > If

> > > > > > > so...where? We live in Galt, CA. Just

> > > south

> > > > of

> > > > > > > Sacramento. Did you mention that Josh

> was

> > > > > > > diagnosised

> > > > > > > with FMF? or ? I'm having a hard

> > time

> > > > > > > remembering everyones different stories.

>

> > > I'm

> > > > > > > feeling

> > > > > > > overjoyed at learning so much from

> others

> > > and

> > > > > > being

> > > > > > > able to connect with others going

> through

> > > the

> > > > > same

> > > > > > > thing I am, but at the same time I feel

> a

> > > > little

> > > > > > > over

> > > > > > > whelmed too. I don't understand why

> > 's

>

=== message truncated ===

__________________________________________________

April 6, 2008

Thanks Ed. , My dx was confirmed on March 12. I am still on 2 Hydrea, 1

Allopurinol and 400 mg Gleevec. I just can't miss anymore days off work. I

had a hot shower this morning with one of those shower massage things and

it helped. I am keeping my figures crossed and thinking good thoughts. Take

care . Eva

_______________

Hi Eva,

It is not real typical to stay on hydrea after you start Gleevec. Some

doctors will use hydrea to get the white count quickly down to 20,000 (with

the allopurinol) but then start Gleevec and not take hydrea.....OR if the

white count is higher than 20,000 when you start Gleevec, also take

allopurinol. I don't know how often your oncologist is having you get a CBC

blood test, but on the combination of both hydrea and Gleevec, your white

blood count could drop quickly.....and this could also be a reason for

having more intense side effects such as cramping and pain. I would try to

get a blood test soon and then talk to your doctor about getting off the

hydrea.

Using cold, such as ice packs, is also good for pain relief and relief of

muscle spasm. Use for about 20 min. until the area is numb to the cold.

Best wishes,

C.

April 6, 2008

Hi ; I go to the oncologist every Wednesday right now . My WBC counts

have gone from 231 to 209 to 127 in 3 weeks , I just started my Gleevec on Last

Wednesday night and these muscle spasms started on Thursday night. I go to the

docs again this Wednesday. Now that I am getting Gleevec I am only on 2 Hydrox

instead of 3. We will see what happens , I am actually a little more comfortable

today . Hope to go to work tomorrow. Thanks Eva

From: Cogan

Sent: Sunday, April 06, 2008 4:22 PM

Subject: [ ] For Eva