For Lori

[Guest guest]

Lori, Thanks so much for your prayers! He woke up this

morning feeling great. So all is well with the world

now (so it feels for now).

So it is not the over the counter folic acid?

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

>

> 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

>

=== message truncated ===

__________________________________________________

[Guest guest]

Glad to hear all is well...

NO...it's NOT over the counter. You must get a script

for the folic acid. It is not uncommon to treat mouth

sores from PFS with folic acid-

Good Luck.

Lori

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

> Lori, Thanks so much for your prayers! He woke up

> this

> morning feeling great. So all is well with the world

> now (so it feels for now).

> So it is not the over the counter folic acid?

>

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

>

> >

> > 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

>

=== message truncated ===

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