Tonsils

[Guest guest]

In a message dated 7/4/03 12:26:59 PM, juliette@... writes:

> It seems like i don'to get sick with things as much since i've been on

> immune system stuff like remicade and methotrexate.. I find this odd. When

> i was taken off metho for a few months, I started getting an infecion

> almost immediately... strange.....

>

>

Me too....

Pris

See how " Nellie " , NCOPP World Trick Champion , learned dozens of tricks.

" Potbellied Pig Behavior and Training " book at www.valentinesperformingpigs.com

[Guest guest]

Hi,

You can add me to this, I also haven't had a cold in the three years I've

been on Methotrexate. I used to get them all the time. Harv RS 23 years

[Guest guest]

Yes, I also get sick much less since I went on Prednisone. It seems

contradictory, but I think when we have autoimmune disease, it weakens our

immune system. Our immune system's so busy attacking our joints and our

eyes, that it has no energy left to fight off infectious disease. So, when

we go on Prednisone or Enbrel then our immune system has the energy to fight

off actual illnessess. That's my theory anyway.

Janet in SF

[Guest guest]

Two months ago , our child has tonsil out operation ,after the operation there

is no symptoms

occured.

Ayhan AÐIRGÖL

august hoffmann

<hoff77@...>

To

03.08.2004 13:29

cc

Please respond to

Subject

Tonsils

Good morning -

         I am wondering about the affects of when the tonsils are removed.

I assume the success stories don't have to return to the message board.

thank you

Toni

  Re: Psychosomatic ????

  Fever disorders for a large part are genetic... JUST has no genetic

  link.

  A 6 month old infant can NOT have a psychosomatic disorder.

  Nor can a 12 month old. There is more to psychosomatic disorders than an

  illness with unknown etiology.

  Somatic symptoms occur in older kids... they are symptoms... like nausea...

  headache... etc..

  Fevers of 105... 103... 106 are not somatic. People are ignorant and do not

  understand where our children's fevers are coming from?

  It is understandable with ... because we do not know the reason

  ourselves nor do the doctors who are currently researching... HOWEVER, we do

  know there is something wrong with the children... BUT like MANY MANY MANY

  other disorders, etiology is unknown.

  Maybe they think a kid is MAKING the themometer go up? LOL I did it as a 10

  yr old because I wanted to stay home from school! I actually bursted a

  couple of glass thermometers!!!!  But a child who is young... does not have

  that ability.

  They also do not have the ability to MAKE their SED rate elevate through

  their psychic powers... nor can they magically make their WBC's elevate.

  I guess sometimes ignorance is bliss.... Ugh!

  I can see people thinking we exagerate... because unless they SEE our kids

  they are clueless... But psychosomatic or Munchausen? )  (Although

  Munchasusen can be mistaken because this is a " created " disorder where the

  parent usually is VERY intelligent and will injure a child or give child

  substances to make a child LOOK like they have a disorder... and because

  they are usually extremely intelligent, they know ways to physically induce

  and mimic symptoms... this is a conscious effort to make the child have

  abnormal lab studies and physical symptoms)

  If the specialists and ER docs run BASIC lab studies... (CBS and SED rate)

  the MAJORITY of the TRUE kids will exhibit clinical abnormalities...

  They WILL show an elevated SED rate, CRP and slightly to extremely elevated

  WBC count.

  AND if the child has a GENETIC fever disorder.... and IF they get DNA

  testing done... they will show MUTATIONS.

  Here is a little info regarding somatic disorders.......

  Somatization in children consists of the persistent experience and

  complaints of somatic distress that cannot be fully explained by a medical

  diagnosis. The somatic symptoms in children with somatization disorder

  become a main focus of their attention and often interfere with school, home

  life, and peer relationships.

  Somatization often occurs in response to psychosocial stress and generally

  persists even after the acute stressor has resolved, resulting in the child

  and family to believe that the correct medical diagnosis has not yet been

  found. Thus, patients and families may continue to seek repeated medical

  treatment after being informed that no acute medical illness has been found

  and that the symptoms can not be fully explained by a medical diagnosis. It

  is generally well accepted that stress and worry can take a physical toll on

  bodies. This can be the unseen source of headaches, backaches, chest pain,

  and stomachaches.

  The term malingering is used when the patient has a specific goal in mind

  when creating the symptoms. Examples are the child's Monday morning " sore

  throat " before school or the shy girl's " sudden weakness " before the school

  prom. The other entity is factitious disorder within which the patient

  simulates a somatic complaint without a specific issue needing control but

  to create an ambiance within family or environment that fulfills a less

  specific need.

  The essential feature of a somatization disorder is a pattern of many of

  physical complaints beginning in persons younger than 30 years that occur

  over several years and result in unnecessary medical treatment and/or cause

  significant impairment in functioning. This diagnosis historically was

  referred to as hysteria or Briquet syndrome. The somatic symptoms are not

  intentionally produced nor feigned and appear to be unconscious to the

  patient. All the following criteria are required for a diagnosis:

    a.. Four different pain sites (eg, head, abdomen, back, joints,

  extremities, chest, rectum) or functions (eg, menstruation, sexual

  intercourse, urination)

    b.. Two gastrointestinal symptoms other than pain (eg, nausea, bloating,

  vomiting not caused by diarrhea, or intolerance of several different foods)

    c.. One sexual or reproductive symptom other than pain

    d.. One pseudoneurological symptom (eg, impaired balance, paralysis,

  aphonia, urinary retention)

  God Bless,

  Fran

  Fran A Bulone

  Mom to ph 5 yrs old

  Waxhaw, NC

  Owner & Moderator Group

 

 

[Guest guest]

Two months ago , our child has tonsil out operation ,after the operation there

is no symptoms

occured.

Ayhan AÐIRGÖL

august hoffmann

<hoff77@...>

To

03.08.2004 13:29

cc

Please respond to

Subject

Tonsils

Good morning -

         I am wondering about the affects of when the tonsils are removed.

I assume the success stories don't have to return to the message board.

thank you

Toni

  Re: Psychosomatic ????

  Fever disorders for a large part are genetic... JUST has no genetic

  link.

  A 6 month old infant can NOT have a psychosomatic disorder.

  Nor can a 12 month old. There is more to psychosomatic disorders than an

  illness with unknown etiology.

  Somatic symptoms occur in older kids... they are symptoms... like nausea...

  headache... etc..

  Fevers of 105... 103... 106 are not somatic. People are ignorant and do not

  understand where our children's fevers are coming from?

  It is understandable with ... because we do not know the reason

  ourselves nor do the doctors who are currently researching... HOWEVER, we do

  know there is something wrong with the children... BUT like MANY MANY MANY

  other disorders, etiology is unknown.

  Maybe they think a kid is MAKING the themometer go up? LOL I did it as a 10

  yr old because I wanted to stay home from school! I actually bursted a

  couple of glass thermometers!!!!  But a child who is young... does not have

  that ability.

  They also do not have the ability to MAKE their SED rate elevate through

  their psychic powers... nor can they magically make their WBC's elevate.

  I guess sometimes ignorance is bliss.... Ugh!

  I can see people thinking we exagerate... because unless they SEE our kids

  they are clueless... But psychosomatic or Munchausen? )  (Although

  Munchasusen can be mistaken because this is a " created " disorder where the

  parent usually is VERY intelligent and will injure a child or give child

  substances to make a child LOOK like they have a disorder... and because

  they are usually extremely intelligent, they know ways to physically induce

  and mimic symptoms... this is a conscious effort to make the child have

  abnormal lab studies and physical symptoms)

  If the specialists and ER docs run BASIC lab studies... (CBS and SED rate)

  the MAJORITY of the TRUE kids will exhibit clinical abnormalities...

  They WILL show an elevated SED rate, CRP and slightly to extremely elevated

  WBC count.

  AND if the child has a GENETIC fever disorder.... and IF they get DNA

  testing done... they will show MUTATIONS.

  Here is a little info regarding somatic disorders.......

  Somatization in children consists of the persistent experience and

  complaints of somatic distress that cannot be fully explained by a medical

  diagnosis. The somatic symptoms in children with somatization disorder

  become a main focus of their attention and often interfere with school, home

  life, and peer relationships.

  Somatization often occurs in response to psychosocial stress and generally

  persists even after the acute stressor has resolved, resulting in the child

  and family to believe that the correct medical diagnosis has not yet been

  found. Thus, patients and families may continue to seek repeated medical

  treatment after being informed that no acute medical illness has been found

  and that the symptoms can not be fully explained by a medical diagnosis. It

  is generally well accepted that stress and worry can take a physical toll on

  bodies. This can be the unseen source of headaches, backaches, chest pain,

  and stomachaches.

  The term malingering is used when the patient has a specific goal in mind

  when creating the symptoms. Examples are the child's Monday morning " sore

  throat " before school or the shy girl's " sudden weakness " before the school

  prom. The other entity is factitious disorder within which the patient

  simulates a somatic complaint without a specific issue needing control but

  to create an ambiance within family or environment that fulfills a less

  specific need.

  The essential feature of a somatization disorder is a pattern of many of

  physical complaints beginning in persons younger than 30 years that occur

  over several years and result in unnecessary medical treatment and/or cause

  significant impairment in functioning. This diagnosis historically was

  referred to as hysteria or Briquet syndrome. The somatic symptoms are not

  intentionally produced nor feigned and appear to be unconscious to the

  patient. All the following criteria are required for a diagnosis:

    a.. Four different pain sites (eg, head, abdomen, back, joints,

  extremities, chest, rectum) or functions (eg, menstruation, sexual

  intercourse, urination)

    b.. Two gastrointestinal symptoms other than pain (eg, nausea, bloating,

  vomiting not caused by diarrhea, or intolerance of several different foods)

    c.. One sexual or reproductive symptom other than pain

    d.. One pseudoneurological symptom (eg, impaired balance, paralysis,

  aphonia, urinary retention)

  God Bless,

  Fran

  Fran A Bulone

  Mom to ph 5 yrs old

  Waxhaw, NC

  Owner & Moderator Group

 

 

[Guest guest]

The effect of after removing the tonsils??

Tonsillectomy works on many of the children with .

There is nothing documented as to the actual statistics although it does

appear here within our group to have a good success rate.

In some it completely resolves the fevers.

In some it decreases episodes and height of the temp.

In some all symptoms seem to disappear.... while in MOST the children seem

to cycle WITHOUT fevers....

We are currently awaiting one of our ENT specialists to initiate an actual

study to see how effective tonsillectomy is...

Not sure if this answers your question.

Fran

Fran A Bulone

Mom to ph 5 yrs old

Waxhaw, NC

Owner & Moderator Group

[Guest guest]

The effect of after removing the tonsils??

Tonsillectomy works on many of the children with .

There is nothing documented as to the actual statistics although it does

appear here within our group to have a good success rate.

In some it completely resolves the fevers.

In some it decreases episodes and height of the temp.

In some all symptoms seem to disappear.... while in MOST the children seem

to cycle WITHOUT fevers....

We are currently awaiting one of our ENT specialists to initiate an actual

study to see how effective tonsillectomy is...

Not sure if this answers your question.

Fran

Fran A Bulone

Mom to ph 5 yrs old

Waxhaw, NC

Owner & Moderator Group

[Guest guest]

Here is the article Tracey is talking about:

Infectious Diseases

Steroids, cimetidine, tonsillectomy

Evidence for Treatments Is Scarce

Finn

San Francisco Bureau

ASPEN, COLO. - Only scanty evidence exists to guide the treatment of the

syndrome of periodic fever, aphthous stomatitis, pharyngitis, and cervical

adenitis, said Dr. J. McFarland at a conference on pediatric

infectious diseases sponsored by Children's Hospital, Denver.

Fortunately, this mysterious syndrome is relatively benign and is associated

with no long-term sequelae.

The most common treatments for periodic fever, aphthous stomatitis,

pharyngitis, and cervical adenitis () include steroids, cimetidine, and

tonsillectomy and adenoidectomy, said Dr. McFarland, director of the

Children's Hospital immunodeficiency clinic.

All seem to have a measure of efficacy, as judged by published cases and

reviews, she said at the meeting, which was also sponsored by the University

of Colorado.

usually strikes at about 3 years of age and involves high fever

(40-41° C) lasting about 5 days, occurring every 28 days.

Associated symptoms are fairly mild. The child's cervical nodes are

typically not markedly enlarged, tender, or inflamed. The pharyngitis is

mild, and may or may not be accompanied by exudates. Likewise, the aphthous

stomatitis also is mild. Typically, children have a small number of

transient ulcers-no larger than half a centimeter in diameter-that cause

only mild discomfort.

Two hallmarks of the syndrome are erythrocyte sedimentation rates and WBC

counts that are elevated during an episode but return to normal soon

thereafter.

Based on case reports and a patient survey, ibuprofen works better than

acetaminophen in these children.

The survey, conducted by other investigators, involved 94 children with

and also looked at other therapies. Of the 49 episodes treated with

steroids, 79% of parents rated the drug " very effective. " Prednisone is

typically used at a dose of 1-2 mg/kg once or twice at the onset of

symptoms. The fever usually resolves rapidly, but the resolution of other

symptoms can be delayed. Nine of the families queried reported shortened

intervals between episodes (J. Pediatr. 135[1]:15-21, 1999).

Before treating a patient with steroids, " I like to be sure that I've ruled

out infection, " said Dr. McFarland. " I really make sure that their sed rate

is coming back to normal between the episodes-that there's no evidence of

malignancy. You don't want to treat someone who has a malignancy with

steroids. . But if you've done all that and you actually have evidence that

they meet the criteria for , then it's useful to consider a dose of

steroids at the onset of disease, and it may be helpful in actually making

the diagnosis. "

Cimetidine seems to be helpful in a minority of cases, but when it works its

effects may be dramatic. Of the 28 patients treated with cimetidine in the

survey, 29% of parents rated the drug " very effective. " Those eight patients

reported no further episodes after 6 months of daily cimetidine prophylaxis.

But 6 months is a long time to treat a young child with daily cimetidine,

and because there are no controlled trials in the literature, it's

impossible to be certain that the remissions were caused by the drug.

Treatment of with tonsillectomy and adenoidectomy also shows promise,

according to a number of case series. Of the 11 patients in the survey who

had undergone the procedure, 7 (64%) had complete resolution and 2 (18%)

experienced decreased frequency of episodes; the remainder did not respond

as well. Three other published case series, involving between 5 and 15

patients, reported no further episodes with follow-up times up to 3 years.

Dr. McFarland emphasized the potential morbidity and mortality of surgery

and suggested that it be reserved for patients who have had for many

years and who are especially desperate.

Re: Tonsils

Hi everyone,

My daughter, Maddie is having her tonsils and adnoids out today!!!

Her pediatrician sent me an article the other day in the mail. She

photocopied

it but it says in the corner it's from " Pediatric News, March 2004 "

The article is called " Evdience for Treatment is Scarce "

It says toward the bottom there was a survey conducted using Steroids,

Cimetidime and Tonsillectomy. It's a long article but I'll copy the

tonsils parts

since this is what we are discussing here... " Treatment for with

tonsillectomy and adenoidectomy also shows promis, according to a number

of case studies. Of the 11 patients in the survey who had undergone the

procedure, 7 (64%) had complete resolution and 2 (18%) experienced

decreased frequency of episodes; the remainder did not respond so well.

Three other published case series, involving between 5 and 15 patients,

reported no further episodes with follow-up times up to 3 years.

Tracey

mom to Maddie, age 5

& Brent, age 9

League City, TX

> The effect of after removing the tonsils??

> Tonsillectomy works on many of the children with .

> There is nothing documented as to the actual statistics although it does

> appear here within our group to have a good success rate.

> In some it completely resolves the fevers.

> In some it decreases episodes and height of the temp.

>

> In some all symptoms seem to disappear.... while in MOST the children

seem

> to cycle WITHOUT fevers....

>

> We are currently awaiting one of our ENT specialists to initiate an

actual

> study to see how effective tonsillectomy is...

>

> Not sure if this answers your question.

> Fran

> Fran A Bulone

> Mom to ph 5 yrs old

> Waxhaw, NC

>

> Owner & Moderator Group

>

>

>

>

[Guest guest]

Here is the article Tracey is talking about:

Infectious Diseases

Steroids, cimetidine, tonsillectomy

Evidence for Treatments Is Scarce

Finn

San Francisco Bureau

ASPEN, COLO. - Only scanty evidence exists to guide the treatment of the

syndrome of periodic fever, aphthous stomatitis, pharyngitis, and cervical

adenitis, said Dr. J. McFarland at a conference on pediatric

infectious diseases sponsored by Children's Hospital, Denver.

Fortunately, this mysterious syndrome is relatively benign and is associated

with no long-term sequelae.

The most common treatments for periodic fever, aphthous stomatitis,

pharyngitis, and cervical adenitis () include steroids, cimetidine, and

tonsillectomy and adenoidectomy, said Dr. McFarland, director of the

Children's Hospital immunodeficiency clinic.

All seem to have a measure of efficacy, as judged by published cases and

reviews, she said at the meeting, which was also sponsored by the University

of Colorado.

usually strikes at about 3 years of age and involves high fever

(40-41° C) lasting about 5 days, occurring every 28 days.

Associated symptoms are fairly mild. The child's cervical nodes are

typically not markedly enlarged, tender, or inflamed. The pharyngitis is

mild, and may or may not be accompanied by exudates. Likewise, the aphthous

stomatitis also is mild. Typically, children have a small number of

transient ulcers-no larger than half a centimeter in diameter-that cause

only mild discomfort.

Two hallmarks of the syndrome are erythrocyte sedimentation rates and WBC

counts that are elevated during an episode but return to normal soon

thereafter.

Based on case reports and a patient survey, ibuprofen works better than

acetaminophen in these children.

The survey, conducted by other investigators, involved 94 children with

and also looked at other therapies. Of the 49 episodes treated with

steroids, 79% of parents rated the drug " very effective. " Prednisone is

typically used at a dose of 1-2 mg/kg once or twice at the onset of

symptoms. The fever usually resolves rapidly, but the resolution of other

symptoms can be delayed. Nine of the families queried reported shortened

intervals between episodes (J. Pediatr. 135[1]:15-21, 1999).

Before treating a patient with steroids, " I like to be sure that I've ruled

out infection, " said Dr. McFarland. " I really make sure that their sed rate

is coming back to normal between the episodes-that there's no evidence of

malignancy. You don't want to treat someone who has a malignancy with

steroids. . But if you've done all that and you actually have evidence that

they meet the criteria for , then it's useful to consider a dose of

steroids at the onset of disease, and it may be helpful in actually making

the diagnosis. "

Cimetidine seems to be helpful in a minority of cases, but when it works its

effects may be dramatic. Of the 28 patients treated with cimetidine in the

survey, 29% of parents rated the drug " very effective. " Those eight patients

reported no further episodes after 6 months of daily cimetidine prophylaxis.

But 6 months is a long time to treat a young child with daily cimetidine,

and because there are no controlled trials in the literature, it's

impossible to be certain that the remissions were caused by the drug.

Treatment of with tonsillectomy and adenoidectomy also shows promise,

according to a number of case series. Of the 11 patients in the survey who

had undergone the procedure, 7 (64%) had complete resolution and 2 (18%)

experienced decreased frequency of episodes; the remainder did not respond

as well. Three other published case series, involving between 5 and 15

patients, reported no further episodes with follow-up times up to 3 years.

Dr. McFarland emphasized the potential morbidity and mortality of surgery

and suggested that it be reserved for patients who have had for many

years and who are especially desperate.

Re: Tonsils

Hi everyone,

My daughter, Maddie is having her tonsils and adnoids out today!!!

Her pediatrician sent me an article the other day in the mail. She

photocopied

it but it says in the corner it's from " Pediatric News, March 2004 "

The article is called " Evdience for Treatment is Scarce "

It says toward the bottom there was a survey conducted using Steroids,

Cimetidime and Tonsillectomy. It's a long article but I'll copy the

tonsils parts

since this is what we are discussing here... " Treatment for with

tonsillectomy and adenoidectomy also shows promis, according to a number

of case studies. Of the 11 patients in the survey who had undergone the

procedure, 7 (64%) had complete resolution and 2 (18%) experienced

decreased frequency of episodes; the remainder did not respond so well.

Three other published case series, involving between 5 and 15 patients,

reported no further episodes with follow-up times up to 3 years.

Tracey

mom to Maddie, age 5

& Brent, age 9

League City, TX

> The effect of after removing the tonsils??

> Tonsillectomy works on many of the children with .

> There is nothing documented as to the actual statistics although it does

> appear here within our group to have a good success rate.

> In some it completely resolves the fevers.

> In some it decreases episodes and height of the temp.

>

> In some all symptoms seem to disappear.... while in MOST the children

seem

> to cycle WITHOUT fevers....

>

> We are currently awaiting one of our ENT specialists to initiate an

actual

> study to see how effective tonsillectomy is...

>

> Not sure if this answers your question.

> Fran

> Fran A Bulone

> Mom to ph 5 yrs old

> Waxhaw, NC

>

> Owner & Moderator Group

>

>

>

>

[Guest guest]

I would like to make a note on the article!

The RESEARCH discussed in this article GOES BACK TO THE SAME research and

only research back in 1987-1997... PUBLISHED in 1999....

She documents this:

>>>>>The survey, conducted by other investigators, involved 94 children with

and also looked at other therapies. Of the 49 episodes treated with

steroids, 79% of parents rated the drug " very effective. " Prednisone is

typically used at a dose of 1-2 mg/kg once or twice at the onset of

symptoms. The fever usually resolves rapidly, but the resolution of other

symptoms can be delayed. Nine of the families queried reported shortened

intervals between episodes (J. Pediatr. 135[1]:15-21, 1999).>>>>>

Sadly NO FOLLOWUP was EVER Done on ANY of these patients.

OUR group tried to contact Dr et al who did this ONLY study and we

requested a few years back.. if she would contact the participants and ASK

them about the outcome... in 2002 which would have been 5 years out... She

said she could not due to confidentiality issues.... etc...

Hopefully IF another study is done regarding and treatment the study

will INCLUDE follow-ups within different time frames... Especially since we

hear stories of returning after very long breaks...

Just some thoughts.

Fran

Fran A Bulone

Mom to ph 5 yrs old

Waxhaw, NC

Owner & Moderator Group

[Guest guest]

I would like to make a note on the article!

The RESEARCH discussed in this article GOES BACK TO THE SAME research and

only research back in 1987-1997... PUBLISHED in 1999....

She documents this:

>>>>>The survey, conducted by other investigators, involved 94 children with

and also looked at other therapies. Of the 49 episodes treated with

steroids, 79% of parents rated the drug " very effective. " Prednisone is

typically used at a dose of 1-2 mg/kg once or twice at the onset of

symptoms. The fever usually resolves rapidly, but the resolution of other

symptoms can be delayed. Nine of the families queried reported shortened

intervals between episodes (J. Pediatr. 135[1]:15-21, 1999).>>>>>

Sadly NO FOLLOWUP was EVER Done on ANY of these patients.

OUR group tried to contact Dr et al who did this ONLY study and we

requested a few years back.. if she would contact the participants and ASK

them about the outcome... in 2002 which would have been 5 years out... She

said she could not due to confidentiality issues.... etc...

Hopefully IF another study is done regarding and treatment the study

will INCLUDE follow-ups within different time frames... Especially since we

hear stories of returning after very long breaks...

Just some thoughts.

Fran

Fran A Bulone

Mom to ph 5 yrs old

Waxhaw, NC

Owner & Moderator Group

[Guest guest]

Hi everyone,

My daughter, Maddie is having her tonsils and adnoids out today!!!

Her pediatrician sent me an article the other day in the mail. She photocopied

it but it says in the corner it's from " Pediatric News, March 2004 "

The article is called " Evdience for Treatment is Scarce "

It says toward the bottom there was a survey conducted using Steroids,

Cimetidime and Tonsillectomy. It's a long article but I'll copy the tonsils

parts

since this is what we are discussing here... " Treatment for with

tonsillectomy and adenoidectomy also shows promis, according to a number

of case studies. Of the 11 patients in the survey who had undergone the

procedure, 7 (64%) had complete resolution and 2 (18%) experienced

decreased frequency of episodes; the remainder did not respond so well.

Three other published case series, involving between 5 and 15 patients,

reported no further episodes with follow-up times up to 3 years.

Tracey

mom to Maddie, age 5

& Brent, age 9

League City, TX

> The effect of after removing the tonsils??

> Tonsillectomy works on many of the children with .

> There is nothing documented as to the actual statistics although it does

> appear here within our group to have a good success rate.

> In some it completely resolves the fevers.

> In some it decreases episodes and height of the temp.

>

> In some all symptoms seem to disappear.... while in MOST the children

seem

> to cycle WITHOUT fevers....

>

> We are currently awaiting one of our ENT specialists to initiate an actual

> study to see how effective tonsillectomy is...

>

> Not sure if this answers your question.

> Fran

> Fran A Bulone

> Mom to ph 5 yrs old

> Waxhaw, NC

>

> Owner & Moderator Group

>

>

>

>

[Guest guest]

Hi everyone,

My daughter, Maddie is having her tonsils and adnoids out today!!!

Her pediatrician sent me an article the other day in the mail. She photocopied

it but it says in the corner it's from " Pediatric News, March 2004 "

The article is called " Evdience for Treatment is Scarce "

It says toward the bottom there was a survey conducted using Steroids,

Cimetidime and Tonsillectomy. It's a long article but I'll copy the tonsils

parts

since this is what we are discussing here... " Treatment for with

tonsillectomy and adenoidectomy also shows promis, according to a number

of case studies. Of the 11 patients in the survey who had undergone the

procedure, 7 (64%) had complete resolution and 2 (18%) experienced

decreased frequency of episodes; the remainder did not respond so well.

Three other published case series, involving between 5 and 15 patients,

reported no further episodes with follow-up times up to 3 years.

Tracey

mom to Maddie, age 5

& Brent, age 9

League City, TX

> The effect of after removing the tonsils??

> Tonsillectomy works on many of the children with .

> There is nothing documented as to the actual statistics although it does

> appear here within our group to have a good success rate.

> In some it completely resolves the fevers.

> In some it decreases episodes and height of the temp.

>

> In some all symptoms seem to disappear.... while in MOST the children

seem

> to cycle WITHOUT fevers....

>

> We are currently awaiting one of our ENT specialists to initiate an actual

> study to see how effective tonsillectomy is...

>

> Not sure if this answers your question.

> Fran

> Fran A Bulone

> Mom to ph 5 yrs old

> Waxhaw, NC

>

> Owner & Moderator Group

>

>

>

>

[Guest guest]

Good luck, Tracey! We'll be praying for you and Maddie today! Just keep the

pain meds and lots of liquids on board!!

Rosemarie

Mom to Danny age 10

Denver, CO

[Guest guest]

Good luck, Tracey! We'll be praying for you and Maddie today! Just keep the

pain meds and lots of liquids on board!!

Rosemarie

Mom to Danny age 10

Denver, CO

[Guest guest]

Well, last May, our son's surgeon removed his tonsils and adenoids to make sure there was no involvement or encroachment on the eustachian tubes. Right now, our son also has those little ear drum tubes they put in kids, so I can't report on the results from my own experience yet, but in the August surgery the surgeon said things were looking healthier in the middle ear (signs of past infection, but no current active infection) which he interprets to mean that the tonsil removal is helping. After the tonsil surgery, he also came out and said that Curtis had "inset" tonsils which often really do block the eustachian tube to some percentage. So he was hopeful that we would get a good affect from the tonsillectomy. Apparently, he couldn't tell before surgery whether the tonsils were inset or not.

On the other hand, a number of people on this list have let me know that they had their tonsils removed and it had made no difference. Maybe the answer is that it makes a difference in some cases, but not others. However, seems worth a try.

Marie

[Guest guest]

Everyone says it is more difficult having tonsils removed in older patients. Anyone know why this is?

Re: Tonsils

Well, last May, our son's surgeon removed his tonsils and adenoids to make sure there was no involvement or encroachment on the eustachian tubes. Right now, our son also has those little ear drum tubes they put in kids, so I can't report on the results from my own experience yet, but in the August surgery the surgeon said things were looking healthier in the middle ear (signs of past infection, but no current active infection) which he interprets to mean that the tonsil removal is helping. After the tonsil surgery, he also came out and said that Curtis had "inset" tonsils which often really do block the eustachian tube to some percentage. So he was hopeful that we would get a good affect from the tonsillectomy. Apparently, he couldn't tell before surgery whether the tonsils were inset or not.On the other hand, a number of people on this list have let me know that they had their tonsils removed and it had made no difference. Maybe the answer is that it makes a difference in some cases, but not others. However, seems worth a try.Marie

[Guest guest]

Had my tonsils and adnoids removed when I was 5 because they thought they were to large and doing just that.... Proved to be wrong, first c-toma removed when i was 13. I have had at least 3 ENTs tell me that chances are my eustacian are probably malformed and that is why I have had so many problems. Believe me I had heard everything as to why, just no cure. After my last surgery about 5 years ago I was told to expect it to happen again. Kind of like a car gets tune ups, i get ear surgery. I am now 41 and my problems have been ongoing since infancy. Chronic ear infections, hearing loss, drainage... Now i usually don't know I have an ear infection until they are really bad. I feel no pain.

Right now i still have not been to a doctor to find out about my dead ear(bad loss), no insurance makes it tough, but the day is comming. bitsyTom Wimer <gtw9356@...> wrote:

I spoke with someone yesterday that told me tonsils will interfere with the Eustacian tube functioning. They pinch the tube off so it will not function properly. I'm 45 and still have my tonsils and am scratching my head on this one. Curious how many of you with Cholesteatoma still have their tonsils and adnoids?

Re: headaches-dizzness

What are the headaches caused by exactly? Fluid in the mastoid cavity? How can you tell it is a mastoid-related headache? I ask because my son complains often of headaches (and he's had 6 surgeries for ctoma now). He complains the most in the months after each surgery and it seems to get a bit better as time passes.thanks,Laurel

[Guest guest]

I had my tonsils and adenoids out at age 13, having had many episodes of tonsillitis. My ear problems started when I was 23-24. I'm 42 now.

Kazz :-)

[Guest guest]

Hi Tom,

You can count my husband as one of those who still have his tonsils and adenoids.

As far as tonsils hurting in older people, I have to agree. I had mine out at 16 and all the ice cream you can eat was something I looked forward to except I couldn't eat it. A friend of mine had his out at 35 and wished he had kept them. As far as why, I don't know but it seems to be true.

Michele, Group ModeratorTom Wimer <gtw9356@...> wrote:

Everyone says it is more difficult having tonsils removed in older patients. Anyone know why this is?

Re: Tonsils

Well, last May, our son's surgeon removed his tonsils and adenoids to make sure there was no involvement or encroachment on the eustachian tubes. Right now, our son also has those little ear drum tubes they put in kids, so I can't report on the results from my own experience yet, but in the August surgery the surgeon said things were looking healthier in the middle ear (signs of past infection, but no current active infection) which he interprets to mean that the tonsil removal is helping. After the tonsil surgery, he also came out and said that Curtis had "inset" tonsils which often really do block the eustachian tube to some percentage. So he was hopeful that we would get a good affect from the tonsillectomy. Apparently, he couldn't tell before surgery whether the tonsils were inset or not.On the other hand, a number of people on this list have let me know that they had

their tonsils removed and it had made no difference. Maybe the answer is that it makes a difference in some cases, but not others. However, seems worth a try.Marie

[Guest guest]

My daughter just had her adenoids removed for that very reason (the surgeon left the tonsils, but they're all related). She's 5, and Dr. Zalzal made it sound like standard procedure for this type of problem, as she had fluid buildup behind both eardrums after having had tubes in twice already. He also put in tubes at the same time.

Made sense at the time, and I think it still does - if something's blocking the tubes at the "exhaust" end, then how well can they clear fluid from the ears?

-Jeff.___________________________________

-----Original Message-----From: Tom Wimer [mailto:gtw9356@...] Sent: Saturday, September 11, 2004 10:05 AMcholesteatoma Subject: Tonsils

I spoke with someone yesterday that told me tonsils will interfere with the Eustacian tube functioning. They pinch the tube off so it will not function properly. I'm 45 and still have my tonsils and am scratching my head on this one. Curious how many of you with Cholesteatoma still have their tonsils and adnoids?

Re: headaches-dizzness

What are the headaches caused by exactly? Fluid in the mastoid cavity? How can you tell it is a mastoid-related headache? I ask because my son complains often of headaches (and he's had 6 surgeries for ctoma now). He complains the most in the months after each surgery and it seems to get a bit better as time passes.thanks,Laurel

[Guest guest]

Toni,

Thanks for your e-mail. I know how you feel. However, I don't think I can

handle this until she is 11. You have been dealing with this for 9 years! That

is unbelievable. Did Dylan have enlarged tonsils or not? My problem is that her

tonsils are not enlarged, however she gets the little ulcers on/near her

tonsils, and then she has a horribly raw and red, but always has been clear and

free of any strep cultures. So he my pediatrician thinks its foolish to take

out her tonsils for " no reason " . I wish you and your family well. Keep me

updated, I will pray for you.

Azzie, mom to Kianna 7 in october and Rustin 4

toni & augie hoffmann <hoff77@...> wrote:

Azzie -

I waited for many years to get my pediatrician's approval for a

tonsillectomy. In the meantime I watched my son fever with 105 temps month

after month. Dylan is 11 and has since 2.

I recently went back to the rheumatologist that diagnosed him and he agreed that

there are many children that have positive effects from the tonsillectomy.

That is all I needed! I immediately made an appt. with an ENT who will do the

operation in December.

You have to make the decision you are comfortable with. But I don't think these

doctors have the answers.

Best Regards

Toni

Mom to Dylan - 11

Long Island, NY

Re: Re: /Califormia

Hi ,

Thanks for your reply. We have not ruled everything out yet, but more and

more it looks like . I am hoping that if I did calculate things right,

that she won't cycle on her birthday party. I had to move her party up to the

10th of October instead of the 23 which is her real birthday. Last year I had

to move her birhtday to the 1st of November. So Yes, I'm learning to deal with

it, but this group has been a blessing. I felt so alone and isolated until now

so I'm really glad I found this group.

In regards to knowing it all, I don't think anyone really knows everything, so

I would love to get any and all information that you might have.

Its been a struggle and I've been begging my pediatrician for a tonsilectamy

(sorry about the spelling) but he doesn't want me to even consider it because he

hasn't ruled out all the genetic disorders. He is also convinced that she will

outgrow this in the next year or two, because he has two other kids in his

practice with . One has been in the clear for a year and is 9. So I'm

confused and don't know what to do.

God willing, she wont be sick at her birthday party. She is having a SPA

PRINCESS party.

Azzie

Mother to Kianna almost 7 and Rustin (boy) 4!

California

webyers <webyers@...> wrote:

--Hi Azzie,

I am in Los Gatos about 45 minutes from San Fransisco. You are in

the LA area? I can't believe you have been dealing with this so

long. Hayden is 3 and we have been at it since he was 8mo. I don't

look forward to 4 more years. How does she deal with this. I

imagine she is quite mature for her age. My son is very aware of

things, like where the different labs are, and when we go to

Stanford that we are there for the ID instead of the Rheum or the

ENT. They are amazing little creatures aren't they. I have learned

so much from my brave little one about patience and fear...I guess

the old saying everything happens for...Maybe I am supposed to learn

things from him.. I like to think of it that way anyway.

We have spent all other diagnoses, so we are back to plain old

. THANK YOU GOD!!! I certainly feel better about that than the

others things that won't just simply be outgrown. I send my heart

and thoughts to all out there who have had not such favorable diags.

I see many different docs. If you are interested I will email them

to you. I am sure that you are a veteran now and have weeded out

the quacks and disbelievers. Or the ones that simply say they are

in daycare its a virus. LOL, want to hurt them...

Good luck to Kianna and your family.

in California,

Mom to Hayden 3yr, Phoenix 10mo, and one in the works.

- In , Azzie Fiouzi <azzief@s...> wrote:

> Hi ,

> I was reading your e-mail to and noticed that you are in

California. I too live in California (Southern) in the Valley.

Whereabouts do you live and maybe we can share infomation. My soon

to be 7 year old Kianna has been dealing with since she was 10

months old.

> Thanks,

> Azzie, mom to Kianna

> California

>

> webyers <webyers@y...> wrote:

> ,

>

> My son has had severe leg and toe pain with his episodes. He has

> been checked for EVERYTHING and still we come back to .

>

> He was also checked for Bechets because of the joint pain and the

> ulcers in his mouth. Just a thought. It usually involves your

> background though. So you may not even need to worry about it. I

am

> French Canadian, and Greek. I guess it is a bad combo for the

> genetic disorders FMF and Bechets.

>

> I also tend to think that if the body is going through the horror

> and discomfort of a high fever our bodies would probably cramp in

> areas too. Unfortunately they are too young to explain the pain.

I

> used to rub Haydens feet as if they were cramped and he seemed to

> feel better. He also seemed to be more uncomfortable with the

heat

> and being dehydrated on top of a fever, this too will cause

cramping.

>

> Good luck with Jarrod,

>

> California,

> Mom to Hayden 3, Phoenix 10mo, and one on the way. -- In

> , merryms@j... wrote:

> > Wondering if anyone ever had experience with pain in the toes??

> Jarrod

> > was extremely restless (up every hour) 2 nights ago complaining

> about his

> > toes. He also has the start of a mouth sore and we are close to

> the time

> > he should fever. We did skip last months fever, but he has had

> times in

> > the past where we've skipped a month or so. Not sure if the toe

> pain can

> > be symptomatic of .

> >

> > - SWFL

> > Mother of Jarrod (2)

>

>

>

[Guest guest]

Toni,

Thanks for your e-mail. I know how you feel. However, I don't think I can

handle this until she is 11. You have been dealing with this for 9 years! That

is unbelievable. Did Dylan have enlarged tonsils or not? My problem is that her

tonsils are not enlarged, however she gets the little ulcers on/near her

tonsils, and then she has a horribly raw and red, but always has been clear and

free of any strep cultures. So he my pediatrician thinks its foolish to take

out her tonsils for " no reason " . I wish you and your family well. Keep me

updated, I will pray for you.

Azzie, mom to Kianna 7 in october and Rustin 4

toni & augie hoffmann <hoff77@...> wrote:

Azzie -

I waited for many years to get my pediatrician's approval for a

tonsillectomy. In the meantime I watched my son fever with 105 temps month

after month. Dylan is 11 and has since 2.

I recently went back to the rheumatologist that diagnosed him and he agreed that

there are many children that have positive effects from the tonsillectomy.

That is all I needed! I immediately made an appt. with an ENT who will do the

operation in December.

You have to make the decision you are comfortable with. But I don't think these

doctors have the answers.

Best Regards

Toni

Mom to Dylan - 11

Long Island, NY

Re: Re: /Califormia

Hi ,

Thanks for your reply. We have not ruled everything out yet, but more and

more it looks like . I am hoping that if I did calculate things right,

that she won't cycle on her birthday party. I had to move her party up to the

10th of October instead of the 23 which is her real birthday. Last year I had

to move her birhtday to the 1st of November. So Yes, I'm learning to deal with

it, but this group has been a blessing. I felt so alone and isolated until now

so I'm really glad I found this group.

In regards to knowing it all, I don't think anyone really knows everything, so

I would love to get any and all information that you might have.

Its been a struggle and I've been begging my pediatrician for a tonsilectamy

(sorry about the spelling) but he doesn't want me to even consider it because he

hasn't ruled out all the genetic disorders. He is also convinced that she will

outgrow this in the next year or two, because he has two other kids in his

practice with . One has been in the clear for a year and is 9. So I'm

confused and don't know what to do.

God willing, she wont be sick at her birthday party. She is having a SPA

PRINCESS party.

Azzie

Mother to Kianna almost 7 and Rustin (boy) 4!

California

webyers <webyers@...> wrote:

--Hi Azzie,

I am in Los Gatos about 45 minutes from San Fransisco. You are in

the LA area? I can't believe you have been dealing with this so

long. Hayden is 3 and we have been at it since he was 8mo. I don't

look forward to 4 more years. How does she deal with this. I

imagine she is quite mature for her age. My son is very aware of

things, like where the different labs are, and when we go to

Stanford that we are there for the ID instead of the Rheum or the

ENT. They are amazing little creatures aren't they. I have learned

so much from my brave little one about patience and fear...I guess

the old saying everything happens for...Maybe I am supposed to learn

things from him.. I like to think of it that way anyway.

We have spent all other diagnoses, so we are back to plain old

. THANK YOU GOD!!! I certainly feel better about that than the

others things that won't just simply be outgrown. I send my heart

and thoughts to all out there who have had not such favorable diags.

I see many different docs. If you are interested I will email them

to you. I am sure that you are a veteran now and have weeded out

the quacks and disbelievers. Or the ones that simply say they are

in daycare its a virus. LOL, want to hurt them...

Good luck to Kianna and your family.

in California,

Mom to Hayden 3yr, Phoenix 10mo, and one in the works.

- In , Azzie Fiouzi <azzief@s...> wrote:

> Hi ,

> I was reading your e-mail to and noticed that you are in

California. I too live in California (Southern) in the Valley.

Whereabouts do you live and maybe we can share infomation. My soon

to be 7 year old Kianna has been dealing with since she was 10

months old.

> Thanks,

> Azzie, mom to Kianna

> California

>

> webyers <webyers@y...> wrote:

> ,

>

> My son has had severe leg and toe pain with his episodes. He has

> been checked for EVERYTHING and still we come back to .

>

> He was also checked for Bechets because of the joint pain and the

> ulcers in his mouth. Just a thought. It usually involves your

> background though. So you may not even need to worry about it. I

am

> French Canadian, and Greek. I guess it is a bad combo for the

> genetic disorders FMF and Bechets.

>

> I also tend to think that if the body is going through the horror

> and discomfort of a high fever our bodies would probably cramp in

> areas too. Unfortunately they are too young to explain the pain.

I

> used to rub Haydens feet as if they were cramped and he seemed to

> feel better. He also seemed to be more uncomfortable with the

heat

> and being dehydrated on top of a fever, this too will cause

cramping.

>

> Good luck with Jarrod,

>

> California,

> Mom to Hayden 3, Phoenix 10mo, and one on the way. -- In

> , merryms@j... wrote:

> > Wondering if anyone ever had experience with pain in the toes??

> Jarrod

> > was extremely restless (up every hour) 2 nights ago complaining

> about his

> > toes. He also has the start of a mouth sore and we are close to

> the time

> > he should fever. We did skip last months fever, but he has had

> times in

> > the past where we've skipped a month or so. Not sure if the toe

> pain can

> > be symptomatic of .

> >

> > - SWFL

> > Mother of Jarrod (2)

>

>

>

[Guest guest]

Kiara was always clear of strept too, But the pediatrician agreed with me and

the ENT didnt so I took her to a family surgeon and he took them out as they

were huge in his opinion and not the ENT's . She has done so well since they

came out! I had to fight for what i knew was right.

Re: Re: /Califormia

Hi ,

Thanks for your reply. We have not ruled everything out yet, but more and

more it looks like . I am hoping that if I did calculate things right,

that she won't cycle on her birthday party. I had to move her party up to the

10th of October instead of the 23 which is her real birthday. Last year I had

to move her birhtday to the 1st of November. So Yes, I'm learning to deal with

it, but this group has been a blessing. I felt so alone and isolated until now

so I'm really glad I found this group.

In regards to knowing it all, I don't think anyone really knows everything,

so I would love to get any and all information that you might have.

Its been a struggle and I've been begging my pediatrician for a tonsilectamy

(sorry about the spelling) but he doesn't want me to even consider it because he

hasn't ruled out all the genetic disorders. He is also convinced that she will

outgrow this in the next year or two, because he has two other kids in his

practice with . One has been in the clear for a year and is 9. So I'm

confused and don't know what to do.

God willing, she wont be sick at her birthday party. She is having a SPA

PRINCESS party.

Azzie

Mother to Kianna almost 7 and Rustin (boy) 4!

California

webyers <webyers@...> wrote:

--Hi Azzie,

I am in Los Gatos about 45 minutes from San Fransisco. You are in

the LA area? I can't believe you have been dealing with this so

long. Hayden is 3 and we have been at it since he was 8mo. I don't

look forward to 4 more years. How does she deal with this. I

imagine she is quite mature for her age. My son is very aware of

things, like where the different labs are, and when we go to

Stanford that we are there for the ID instead of the Rheum or the

ENT. They are amazing little creatures aren't they. I have learned

so much from my brave little one about patience and fear...I guess

the old saying everything happens for...Maybe I am supposed to learn

things from him.. I like to think of it that way anyway.

We have spent all other diagnoses, so we are back to plain old

. THANK YOU GOD!!! I certainly feel better about that than the

others things that won't just simply be outgrown. I send my heart

and thoughts to all out there who have had not such favorable diags.

I see many different docs. If you are interested I will email them

to you. I am sure that you are a veteran now and have weeded out

the quacks and disbelievers. Or the ones that simply say they are

in daycare its a virus. LOL, want to hurt them...

Good luck to Kianna and your family.

in California,

Mom to Hayden 3yr, Phoenix 10mo, and one in the works.

- In , Azzie Fiouzi <azzief@s...> wrote:

> Hi ,

> I was reading your e-mail to and noticed that you are in

California. I too live in California (Southern) in the Valley.

Whereabouts do you live and maybe we can share infomation. My soon

to be 7 year old Kianna has been dealing with since she was 10

months old.

> Thanks,

> Azzie, mom to Kianna

> California

>

> webyers <webyers@y...> wrote:

> ,

>

> My son has had severe leg and toe pain with his episodes. He has

> been checked for EVERYTHING and still we come back to .

>

> He was also checked for Bechets because of the joint pain and the

> ulcers in his mouth. Just a thought. It usually involves your

> background though. So you may not even need to worry about it. I

am

> French Canadian, and Greek. I guess it is a bad combo for the

> genetic disorders FMF and Bechets.

>

> I also tend to think that if the body is going through the horror

> and discomfort of a high fever our bodies would probably cramp in

> areas too. Unfortunately they are too young to explain the pain.

I

> used to rub Haydens feet as if they were cramped and he seemed to

> feel better. He also seemed to be more uncomfortable with the

heat

> and being dehydrated on top of a fever, this too will cause

cramping.

>

> Good luck with Jarrod,

>

> California,

> Mom to Hayden 3, Phoenix 10mo, and one on the way. -- In

> , merryms@j... wrote:

> > Wondering if anyone ever had experience with pain in the toes??

> Jarrod

> > was extremely restless (up every hour) 2 nights ago complaining

> about his

> > toes. He also has the start of a mouth sore and we are close to

> the time

> > he should fever. We did skip last months fever, but he has had

> times in

> > the past where we've skipped a month or so. Not sure if the toe

> pain can

> > be symptomatic of .

> >

> > - SWFL

> > Mother of Jarrod (2)

>

>

>

[Guest guest]

Kiara was always clear of strept too, But the pediatrician agreed with me and

the ENT didnt so I took her to a family surgeon and he took them out as they

were huge in his opinion and not the ENT's . She has done so well since they

came out! I had to fight for what i knew was right.

Re: Re: /Califormia

Hi ,

Thanks for your reply. We have not ruled everything out yet, but more and

more it looks like . I am hoping that if I did calculate things right,

that she won't cycle on her birthday party. I had to move her party up to the

10th of October instead of the 23 which is her real birthday. Last year I had

to move her birhtday to the 1st of November. So Yes, I'm learning to deal with

it, but this group has been a blessing. I felt so alone and isolated until now

so I'm really glad I found this group.

In regards to knowing it all, I don't think anyone really knows everything,

so I would love to get any and all information that you might have.

Its been a struggle and I've been begging my pediatrician for a tonsilectamy

(sorry about the spelling) but he doesn't want me to even consider it because he

hasn't ruled out all the genetic disorders. He is also convinced that she will

outgrow this in the next year or two, because he has two other kids in his

practice with . One has been in the clear for a year and is 9. So I'm

confused and don't know what to do.

God willing, she wont be sick at her birthday party. She is having a SPA

PRINCESS party.

Azzie

Mother to Kianna almost 7 and Rustin (boy) 4!

California

webyers <webyers@...> wrote:

--Hi Azzie,

I am in Los Gatos about 45 minutes from San Fransisco. You are in

the LA area? I can't believe you have been dealing with this so

long. Hayden is 3 and we have been at it since he was 8mo. I don't

look forward to 4 more years. How does she deal with this. I

imagine she is quite mature for her age. My son is very aware of

things, like where the different labs are, and when we go to

Stanford that we are there for the ID instead of the Rheum or the

ENT. They are amazing little creatures aren't they. I have learned

so much from my brave little one about patience and fear...I guess

the old saying everything happens for...Maybe I am supposed to learn

things from him.. I like to think of it that way anyway.

We have spent all other diagnoses, so we are back to plain old

. THANK YOU GOD!!! I certainly feel better about that than the

others things that won't just simply be outgrown. I send my heart

and thoughts to all out there who have had not such favorable diags.

I see many different docs. If you are interested I will email them

to you. I am sure that you are a veteran now and have weeded out

the quacks and disbelievers. Or the ones that simply say they are

in daycare its a virus. LOL, want to hurt them...

Good luck to Kianna and your family.

in California,

Mom to Hayden 3yr, Phoenix 10mo, and one in the works.

- In , Azzie Fiouzi <azzief@s...> wrote:

> Hi ,

> I was reading your e-mail to and noticed that you are in

California. I too live in California (Southern) in the Valley.

Whereabouts do you live and maybe we can share infomation. My soon

to be 7 year old Kianna has been dealing with since she was 10

months old.

> Thanks,

> Azzie, mom to Kianna

> California

>

> webyers <webyers@y...> wrote:

> ,

>

> My son has had severe leg and toe pain with his episodes. He has

> been checked for EVERYTHING and still we come back to .

>

> He was also checked for Bechets because of the joint pain and the

> ulcers in his mouth. Just a thought. It usually involves your

> background though. So you may not even need to worry about it. I

am

> French Canadian, and Greek. I guess it is a bad combo for the

> genetic disorders FMF and Bechets.

>

> I also tend to think that if the body is going through the horror

> and discomfort of a high fever our bodies would probably cramp in

> areas too. Unfortunately they are too young to explain the pain.

I

> used to rub Haydens feet as if they were cramped and he seemed to

> feel better. He also seemed to be more uncomfortable with the

heat

> and being dehydrated on top of a fever, this too will cause

cramping.

>

> Good luck with Jarrod,

>

> California,

> Mom to Hayden 3, Phoenix 10mo, and one on the way. -- In

> , merryms@j... wrote:

> > Wondering if anyone ever had experience with pain in the toes??

> Jarrod

> > was extremely restless (up every hour) 2 nights ago complaining

> about his

> > toes. He also has the start of a mouth sore and we are close to

> the time

> > he should fever. We did skip last months fever, but he has had

> times in

> > the past where we've skipped a month or so. Not sure if the toe

> pain can

> > be symptomatic of .

> >

> > - SWFL

> > Mother of Jarrod (2)

>

>

>