New Member

[Guest guest]

Are you by any chance seeing Dr. Belcher? He diagnosed my son after 4 years of

no diagnosis!

Carol Reynolds & Casey (7 1/2)

Greenfield, Indiana

[Guest guest]

Are you by any chance seeing Dr. Belcher? He diagnosed my son after 4 years of

no diagnosis!

Carol Reynolds & Casey (7 1/2)

Greenfield, Indiana

[Guest guest]

My daughter is 13.5, diagnosed at 9 and cycling since she was three. I also

think that

she is one of the oldest in this group. Jordan does seem old for the onset of

,

but it is a hard syndrome to pin down. a had her tonsils & adenoids out 11

days

ago, and so far so good! We had been waiting for her to grow out of it since

her

diagnosis, because at nine years old she was already a little old for . We

finally

got fed up with an episode on every holiday and every vacation! She was ready

too.

We go away in two weeks - and we are hoping this is our first fever-free trip to

Cape

Cod in 10 years!

> Hi! I am a new member to this board. I am not sure where to post my

> family background, but I will give you the latest. My son, Jordan,

> began having fevers of 101-105 in November and has had them every

> month since. He also has the sore throat, headache and occ. stomach

> ache. He is prone to cancre soars anyway so we hadn't linked them to

> his febrile episodes. He missed 23 days of school this year with

> these episodes. We are now on the right track and have a great

> infectuous disease Dr. here in Carmel, Indiana. We just completed

> all the first round of blood tests and won't see the Dr. again until

> July 6th. His initial impression is that Jordan has , but of

> course he wants to rule the other things out for sure. He seems to

> lean towards having his tonsils removed as they are always swollen

> with exudate when these fevers occur and his cervical lymph nodes

> enlarge. The thing I am interested in learning is how other children

> have responded to tonsillectomy. Jordan is 12 years old and seems a

> bit old compared to the other children I have read about. I have been

> a Registered Nurse for 25 years and currently work in an ER. I now

> wonder how many of these children have presented for treatment in our

> ER and received a septic workup for these same fevers.

> Machell Nematollahi

[Guest guest]

My daughter is 13.5, diagnosed at 9 and cycling since she was three. I also

think that

she is one of the oldest in this group. Jordan does seem old for the onset of

,

but it is a hard syndrome to pin down. a had her tonsils & adenoids out 11

days

ago, and so far so good! We had been waiting for her to grow out of it since

her

diagnosis, because at nine years old she was already a little old for . We

finally

got fed up with an episode on every holiday and every vacation! She was ready

too.

We go away in two weeks - and we are hoping this is our first fever-free trip to

Cape

Cod in 10 years!

> Hi! I am a new member to this board. I am not sure where to post my

> family background, but I will give you the latest. My son, Jordan,

> began having fevers of 101-105 in November and has had them every

> month since. He also has the sore throat, headache and occ. stomach

> ache. He is prone to cancre soars anyway so we hadn't linked them to

> his febrile episodes. He missed 23 days of school this year with

> these episodes. We are now on the right track and have a great

> infectuous disease Dr. here in Carmel, Indiana. We just completed

> all the first round of blood tests and won't see the Dr. again until

> July 6th. His initial impression is that Jordan has , but of

> course he wants to rule the other things out for sure. He seems to

> lean towards having his tonsils removed as they are always swollen

> with exudate when these fevers occur and his cervical lymph nodes

> enlarge. The thing I am interested in learning is how other children

> have responded to tonsillectomy. Jordan is 12 years old and seems a

> bit old compared to the other children I have read about. I have been

> a Registered Nurse for 25 years and currently work in an ER. I now

> wonder how many of these children have presented for treatment in our

> ER and received a septic workup for these same fevers.

> Machell Nematollahi

[Guest guest]

> > Hi! I am a new member to this board. I am not sure where to

post my

> > family background, but I will give you the latest. My son,

Jordan,

> > began having fevers of 101-105 in November and has had them every

> > month since. He also has the sore throat, headache and occ.

stomach

> > ache. He is prone to cancre soars anyway so we hadn't linked

them to

> > his febrile episodes. He missed 23 days of school this year with

> > these episodes. We are now on the right track and have a great

> > infectuous disease Dr. here in Carmel, Indiana. We just

completed

> > all the first round of blood tests and won't see the Dr. again

until

> > July 6th. His initial impression is that Jordan has , but of

> > course he wants to rule the other things out for sure. He seems

to

> > lean towards having his tonsils removed as they are always

swollen

> > with exudate when these fevers occur and his cervical lymph nodes

> > enlarge. The thing I am interested in learning is how other

children

> > have responded to tonsillectomy. Jordan is 12 years old and

seems a

> > bit old compared to the other children I have read about. I have

been

> > a Registered Nurse for 25 years and currently work in an ER. I

now

> > wonder how many of these children have presented for treatment in

our

> > ER and received a septic workup for these same fevers.

> > Machell Nematollahi

[Guest guest]

> > Hi! I am a new member to this board. I am not sure where to

post my

> > family background, but I will give you the latest. My son,

Jordan,

> > began having fevers of 101-105 in November and has had them every

> > month since. He also has the sore throat, headache and occ.

stomach

> > ache. He is prone to cancre soars anyway so we hadn't linked

them to

> > his febrile episodes. He missed 23 days of school this year with

> > these episodes. We are now on the right track and have a great

> > infectuous disease Dr. here in Carmel, Indiana. We just

completed

> > all the first round of blood tests and won't see the Dr. again

until

> > July 6th. His initial impression is that Jordan has , but of

> > course he wants to rule the other things out for sure. He seems

to

> > lean towards having his tonsils removed as they are always

swollen

> > with exudate when these fevers occur and his cervical lymph nodes

> > enlarge. The thing I am interested in learning is how other

children

> > have responded to tonsillectomy. Jordan is 12 years old and

seems a

> > bit old compared to the other children I have read about. I have

been

> > a Registered Nurse for 25 years and currently work in an ER. I

now

> > wonder how many of these children have presented for treatment in

our

> > ER and received a septic workup for these same fevers.

> > Machell Nematollahi

[Guest guest]

My daughter, Lydia (2 1/2) had her tonsils and adenoids out almost 3 months ago

after a year of cyclic monthly fevers. So far, she has done great..no

fevers..... i hate to jinx us by saying that, but i just wanted to let you know

that our experience has been very positive so far. She has even gained almost 4

pounds since the surgery!! She seems so much happier and healthier overall now.

I definitely know it was the right choice for us. Pam

Re: New Member

> > Hi! I am a new member to this board. I am not sure where to

post my

> > family background, but I will give you the latest. My son,

Jordan,

> > began having fevers of 101-105 in November and has had them every

> > month since. He also has the sore throat, headache and occ.

stomach

> > ache. He is prone to cancre soars anyway so we hadn't linked

them to

> > his febrile episodes. He missed 23 days of school this year with

> > these episodes. We are now on the right track and have a great

> > infectuous disease Dr. here in Carmel, Indiana. We just

completed

> > all the first round of blood tests and won't see the Dr. again

until

> > July 6th. His initial impression is that Jordan has , but of

> > course he wants to rule the other things out for sure. He seems

to

> > lean towards having his tonsils removed as they are always

swollen

> > with exudate when these fevers occur and his cervical lymph nodes

> > enlarge. The thing I am interested in learning is how other

children

> > have responded to tonsillectomy. Jordan is 12 years old and

seems a

> > bit old compared to the other children I have read about. I have

been

> > a Registered Nurse for 25 years and currently work in an ER. I

now

> > wonder how many of these children have presented for treatment in

our

> > ER and received a septic workup for these same fevers.

> > Machell Nematollahi

[Guest guest]

My daughter, Lydia (2 1/2) had her tonsils and adenoids out almost 3 months ago

after a year of cyclic monthly fevers. So far, she has done great..no

fevers..... i hate to jinx us by saying that, but i just wanted to let you know

that our experience has been very positive so far. She has even gained almost 4

pounds since the surgery!! She seems so much happier and healthier overall now.

I definitely know it was the right choice for us. Pam

Re: New Member

> > Hi! I am a new member to this board. I am not sure where to

post my

> > family background, but I will give you the latest. My son,

Jordan,

> > began having fevers of 101-105 in November and has had them every

> > month since. He also has the sore throat, headache and occ.

stomach

> > ache. He is prone to cancre soars anyway so we hadn't linked

them to

> > his febrile episodes. He missed 23 days of school this year with

> > these episodes. We are now on the right track and have a great

> > infectuous disease Dr. here in Carmel, Indiana. We just

completed

> > all the first round of blood tests and won't see the Dr. again

until

> > July 6th. His initial impression is that Jordan has , but of

> > course he wants to rule the other things out for sure. He seems

to

> > lean towards having his tonsils removed as they are always

swollen

> > with exudate when these fevers occur and his cervical lymph nodes

> > enlarge. The thing I am interested in learning is how other

children

> > have responded to tonsillectomy. Jordan is 12 years old and

seems a

> > bit old compared to the other children I have read about. I have

been

> > a Registered Nurse for 25 years and currently work in an ER. I

now

> > wonder how many of these children have presented for treatment in

our

> > ER and received a septic workup for these same fevers.

> > Machell Nematollahi

[Guest guest]

Hi Jackie,

I'm , one of the older women (53). I live in NY. I have SMA and have

used a wheelchair since I'm 11.

Welcome to the group.

[Guest guest]

Hi ,

My name is Wagner and I am also a member of the same support group that

you've just joined. I also know the feeling of the " armchair physician "

treatment. Just recently my wife and I were informed that our daughter, who has

not shown signs or symptoms of for months, should have probably been

diagnosed with it. The way we have found this out was by taking her sister to

an urgent care when she was displaying very similar symptoms. Through research

via various web sites, I have found out about the same things that it seems you

have. When my wife and I tactfully approached our physician, he gave me the

same reaction that you've received. I am not sure that he was ready to accept

that we really had done our homework. We have tried to convince him to take a

look at her record and review the lack of a diagnosis to which he has denied our

request. Unfortunately, we had to choose to get a second opinion as well as a

new physician. I hope that you do not have to start the same way we have. I

would stay after your doctor until you get some kind of definitive answer from

him/her or else look into taking your case somewhere where they might be a

little more receptive to your opinion.

Good luck,

Wagner

Father to Mychaela and Melanee

Omaha, NE

--- Original Message -----

From: rebwelch195<mailto:rebwelch@...>

<mailto: >

Sent: Monday, July 12, 2004 1:24 PM

Subject: new member

Hi, my name is and I have a 7 year old daughter who began

having fevers in February. We live in central Mass. I'm totally

uncertain if she may have or not. I found out about it while

researching on the web. She seems to come down with a fever every 4 -

6 weeks and they last between 2 and 4 days. She missed quite a bit of

school the last half of the year because of this. I only became

suspicious about two months ago as she had a sinus infection back in

February, a severe allergic reaction to amoxicillan, then I had a bout

of 5th disease which I attributed to getting from her since one of her

fevers came on before my illness, BUT she came down with 5th disease

after me. Anyway - I mentioned this illness () to my

pediatrician this morning and he'd never heard of it. I was kind of

given the " I hate armchair physicians " look. She was tested for strep

and mono this a.m. - both negative. He's planning to send her in for

blood work when she's feeling better.

She was a very healthy infant/toddler never even had an antibiotic

until last year when she had strep. Ibuprofen seems to help for about

4-5 hours when she's ill and fevers go as high as 105 sometimes. She

is prone to canker sores as well and I've been told that she has

enlarged tonsils/adenoids. I've never noticed if canker sores

coincide with fevers. Overall her height and weight have been

progressing normally and she's completely healthy between bouts. Also

she seems to eat and drink reasonably well while ill.

Am I reading too much into her symptoms? Am I jumping to conclusions

too soon? I appreciate any feedback.

Regards,

W.

[Guest guest]

Hi ,

My name is Wagner and I am also a member of the same support group that

you've just joined. I also know the feeling of the " armchair physician "

treatment. Just recently my wife and I were informed that our daughter, who has

not shown signs or symptoms of for months, should have probably been

diagnosed with it. The way we have found this out was by taking her sister to

an urgent care when she was displaying very similar symptoms. Through research

via various web sites, I have found out about the same things that it seems you

have. When my wife and I tactfully approached our physician, he gave me the

same reaction that you've received. I am not sure that he was ready to accept

that we really had done our homework. We have tried to convince him to take a

look at her record and review the lack of a diagnosis to which he has denied our

request. Unfortunately, we had to choose to get a second opinion as well as a

new physician. I hope that you do not have to start the same way we have. I

would stay after your doctor until you get some kind of definitive answer from

him/her or else look into taking your case somewhere where they might be a

little more receptive to your opinion.

Good luck,

Wagner

Father to Mychaela and Melanee

Omaha, NE

--- Original Message -----

From: rebwelch195<mailto:rebwelch@...>

<mailto: >

Sent: Monday, July 12, 2004 1:24 PM

Subject: new member

Hi, my name is and I have a 7 year old daughter who began

having fevers in February. We live in central Mass. I'm totally

uncertain if she may have or not. I found out about it while

researching on the web. She seems to come down with a fever every 4 -

6 weeks and they last between 2 and 4 days. She missed quite a bit of

school the last half of the year because of this. I only became

suspicious about two months ago as she had a sinus infection back in

February, a severe allergic reaction to amoxicillan, then I had a bout

of 5th disease which I attributed to getting from her since one of her

fevers came on before my illness, BUT she came down with 5th disease

after me. Anyway - I mentioned this illness () to my

pediatrician this morning and he'd never heard of it. I was kind of

given the " I hate armchair physicians " look. She was tested for strep

and mono this a.m. - both negative. He's planning to send her in for

blood work when she's feeling better.

She was a very healthy infant/toddler never even had an antibiotic

until last year when she had strep. Ibuprofen seems to help for about

4-5 hours when she's ill and fevers go as high as 105 sometimes. She

is prone to canker sores as well and I've been told that she has

enlarged tonsils/adenoids. I've never noticed if canker sores

coincide with fevers. Overall her height and weight have been

progressing normally and she's completely healthy between bouts. Also

she seems to eat and drink reasonably well while ill.

Am I reading too much into her symptoms? Am I jumping to conclusions

too soon? I appreciate any feedback.

Regards,

W.

[Guest guest]

,

WELCOME

I am happy you found our wonderful group!!

There is an abundant amount of information regarding all of the periodic

fevers here... as well as information about other disorders which may

present in a similar fashion.

We have assisted parents in asserting themselves... keeping logs indicating

onset, length of fever, fever range... highest to lowest.... how the fever

reacted to Motrin and Tylenol and keeping close monitoring of other symptoms

such as Canker Sores, pharyngitis and/or tonsillitis.... vomiting, joint

pain, rashes etc... All of these monitored assist doctors with an accurate

diagnosis.

is a disorder of exclusion.... there is NO definitive test for the

disorder whereas, with the other fever disorders such as HIDs, TRAPs and FMF

there are usually genetic mutations which show up when DNA studies are sent

to the lab! Other disorders such as Bechets and Crohn's may also appear

with periodic fevers...

As for the doctor looking at you funny... VERY common... LOL

Many have not heard of or some of the other disorders!!

On the other end of the spectrum, more currently we find some doctors

labeling children tooo fast only to find out later when the parents push for

more studies including DNA tests... that the children are diagnosed with

genetic fever disorders such as FMF, TRAPs or HIDs. Sad when that happens as

treatment is different and with the genetic disorders there are potential

secondary diseases that may occur of treatment is not initiated...

This is a great site to network and find people who have found doctors

locally that might be more attuned to fever disorders.

God Bless,

Fran

Fran A Bulone

Mom to ph 5 yrs old

Waxhaw, NC

Owner & Moderator Group

[Guest guest]

,

WELCOME

I am happy you found our wonderful group!!

There is an abundant amount of information regarding all of the periodic

fevers here... as well as information about other disorders which may

present in a similar fashion.

We have assisted parents in asserting themselves... keeping logs indicating

onset, length of fever, fever range... highest to lowest.... how the fever

reacted to Motrin and Tylenol and keeping close monitoring of other symptoms

such as Canker Sores, pharyngitis and/or tonsillitis.... vomiting, joint

pain, rashes etc... All of these monitored assist doctors with an accurate

diagnosis.

is a disorder of exclusion.... there is NO definitive test for the

disorder whereas, with the other fever disorders such as HIDs, TRAPs and FMF

there are usually genetic mutations which show up when DNA studies are sent

to the lab! Other disorders such as Bechets and Crohn's may also appear

with periodic fevers...

As for the doctor looking at you funny... VERY common... LOL

Many have not heard of or some of the other disorders!!

On the other end of the spectrum, more currently we find some doctors

labeling children tooo fast only to find out later when the parents push for

more studies including DNA tests... that the children are diagnosed with

genetic fever disorders such as FMF, TRAPs or HIDs. Sad when that happens as

treatment is different and with the genetic disorders there are potential

secondary diseases that may occur of treatment is not initiated...

This is a great site to network and find people who have found doctors

locally that might be more attuned to fever disorders.

God Bless,

Fran

Fran A Bulone

Mom to ph 5 yrs old

Waxhaw, NC

Owner & Moderator Group

[Guest guest]

I agree with what said. My husband and I had the same negative

experience with our daughter in that no one would listen to us. We to

like and his family had to change Dr. after many frustrating

experience and getting no where. Changing Dr.s made a world of

difference. I would say my biggest piece of advice is trust your gut

instinct as a parent and follow it. If you aren't getting answers keep

pursuing it.

Good Luck

Christy

Missouri Valley IA

Mom to 4 y/o

>>> ERDTDiver59@... 07/12/04 01:48PM >>>

Hi ,

My name is Wagner and I am also a member of the same support

group that you've just joined. I also know the feeling of the " armchair

physician " treatment. Just recently my wife and I were informed that

our daughter, who has not shown signs or symptoms of for months,

should have probably been diagnosed with it. The way we have found this

out was by taking her sister to an urgent care when she was displaying

very similar symptoms. Through research via various web sites, I have

found out about the same things that it seems you have. When my wife

and I tactfully approached our physician, he gave me the same reaction

that you've received. I am not sure that he was ready to accept that we

really had done our homework. We have tried to convince him to take a

look at her record and review the lack of a diagnosis to which he has

denied our request. Unfortunately, we had to choose to get a second

opinion as well as a new physician. I hope that you do not have to

start the same way we have. I would stay after your doctor until you

get some kind of definitive answer from him/her or else look into taking

your case somewhere where they might be a little more receptive to your

opinion.

Good luck,

Wagner

Father to Mychaela and Melanee

Omaha, NE

--- Original Message -----

From: rebwelch195<mailto:rebwelch@...>

<mailto: >

Sent: Monday, July 12, 2004 1:24 PM

Subject: new member

Hi, my name is and I have a 7 year old daughter who began

having fevers in February. We live in central Mass. I'm totally

uncertain if she may have or not. I found out about it while

researching on the web. She seems to come down with a fever every 4

-

6 weeks and they last between 2 and 4 days. She missed quite a bit

of

school the last half of the year because of this. I only became

suspicious about two months ago as she had a sinus infection back in

February, a severe allergic reaction to amoxicillan, then I had a

bout

of 5th disease which I attributed to getting from her since one of

her

fevers came on before my illness, BUT she came down with 5th disease

after me. Anyway - I mentioned this illness () to my

pediatrician this morning and he'd never heard of it. I was kind of

given the " I hate armchair physicians " look. She was tested for

strep

and mono this a.m. - both negative. He's planning to send her in

for

blood work when she's feeling better.

She was a very healthy infant/toddler never even had an antibiotic

until last year when she had strep. Ibuprofen seems to help for

about

4-5 hours when she's ill and fevers go as high as 105 sometimes.

She

is prone to canker sores as well and I've been told that she has

enlarged tonsils/adenoids. I've never noticed if canker sores

coincide with fevers. Overall her height and weight have been

progressing normally and she's completely healthy between bouts.

Also

she seems to eat and drink reasonably well while ill.

Am I reading too much into her symptoms? Am I jumping to

conclusions

too soon? I appreciate any feedback.

Regards,

W.

[Guest guest]

I agree with what said. My husband and I had the same negative

experience with our daughter in that no one would listen to us. We to

like and his family had to change Dr. after many frustrating

experience and getting no where. Changing Dr.s made a world of

difference. I would say my biggest piece of advice is trust your gut

instinct as a parent and follow it. If you aren't getting answers keep

pursuing it.

Good Luck

Christy

Missouri Valley IA

Mom to 4 y/o

>>> ERDTDiver59@... 07/12/04 01:48PM >>>

Hi ,

My name is Wagner and I am also a member of the same support

group that you've just joined. I also know the feeling of the " armchair

physician " treatment. Just recently my wife and I were informed that

our daughter, who has not shown signs or symptoms of for months,

should have probably been diagnosed with it. The way we have found this

out was by taking her sister to an urgent care when she was displaying

very similar symptoms. Through research via various web sites, I have

found out about the same things that it seems you have. When my wife

and I tactfully approached our physician, he gave me the same reaction

that you've received. I am not sure that he was ready to accept that we

really had done our homework. We have tried to convince him to take a

look at her record and review the lack of a diagnosis to which he has

denied our request. Unfortunately, we had to choose to get a second

opinion as well as a new physician. I hope that you do not have to

start the same way we have. I would stay after your doctor until you

get some kind of definitive answer from him/her or else look into taking

your case somewhere where they might be a little more receptive to your

opinion.

Good luck,

Wagner

Father to Mychaela and Melanee

Omaha, NE

--- Original Message -----

From: rebwelch195<mailto:rebwelch@...>

<mailto: >

Sent: Monday, July 12, 2004 1:24 PM

Subject: new member

Hi, my name is and I have a 7 year old daughter who began

having fevers in February. We live in central Mass. I'm totally

uncertain if she may have or not. I found out about it while

researching on the web. She seems to come down with a fever every 4

-

6 weeks and they last between 2 and 4 days. She missed quite a bit

of

school the last half of the year because of this. I only became

suspicious about two months ago as she had a sinus infection back in

February, a severe allergic reaction to amoxicillan, then I had a

bout

of 5th disease which I attributed to getting from her since one of

her

fevers came on before my illness, BUT she came down with 5th disease

after me. Anyway - I mentioned this illness () to my

pediatrician this morning and he'd never heard of it. I was kind of

given the " I hate armchair physicians " look. She was tested for

strep

and mono this a.m. - both negative. He's planning to send her in

for

blood work when she's feeling better.

She was a very healthy infant/toddler never even had an antibiotic

until last year when she had strep. Ibuprofen seems to help for

about

4-5 hours when she's ill and fevers go as high as 105 sometimes.

She

is prone to canker sores as well and I've been told that she has

enlarged tonsils/adenoids. I've never noticed if canker sores

coincide with fevers. Overall her height and weight have been

progressing normally and she's completely healthy between bouts.

Also

she seems to eat and drink reasonably well while ill.

Am I reading too much into her symptoms? Am I jumping to

conclusions

too soon? I appreciate any feedback.

Regards,

W.

[Guest guest]

Hi ,

Sorry that you have experienced the insensitive treatment from your

doctor. I went through the same with our daughters.

I'm wondering about your daughters' fevers. The fact that there are 2

children displaying similar symptoms makes the diagnosis very

unlikely. Since is not genetic, it's very unlikely that 2

children in the same family could have it. Have you discussed the

possiblity of genetically caused fevers with your new physician? There

is a lot of info in the files section of this website. You may want

to continue your research there.

What are your daughters symptoms? Ages?

Wilke

Mother to Hana and Georgia both with HIDS

Canada

> Hi ,

>

> My name is Wagner and I am also a member of the same support

group that you've just joined. I also know the feeling of the

" armchair physician " treatment. Just recently my wife and I were

informed that our daughter, who has not shown signs or symptoms of

for months, should have probably been diagnosed with it. The

way we have found this out was by taking her sister to an urgent care

when she was displaying very similar symptoms. Through research via

various web sites, I have foun

out about the same things that it seems you have. When my wife and

I tactfully approached our physician, he gave me the same reaction

that you've received. I am not sure that he was ready to accept that

we really had done our homework. We have tried to convince him to

take a look at her record and review the lack of a diagnosis to which

he has denied our request. Unfortunately, we had to choose to get a

second opinion as well as a new physician. I hope that you do not

have to start the same way we have. I would stay after your doctor

until you get some kind of definitive answer from him/her or else look

into taking your case somewhere where they might be a little more

receptive to your opinion.

> Good luck,

> Wagner

> Father to Mychaela and Melanee

> Omaha, NE

>

> --- Original Message -----

> From: rebwelch195<mailto:rebwelch@a...>

> <mailto: >

> Sent: Monday, July 12, 2004 1:24 PM

> Subject: new member

>

>

> Hi, my name is and I have a 7 year old daughter who began

> having fevers in February. We live in central Mass. I'm totally

> uncertain if she may have or not. I found out about it while

> researching on the web. She seems to come down with a fever every 4 -

> 6 weeks and they last between 2 and 4 days. She missed quite a bit of

> school the last half of the year because of this. I only became

> suspicious about two months ago as she had a sinus infection back in

> February, a severe allergic reaction to amoxicillan, then I had a bout

> of 5th disease which I attributed to getting from her since one of her

> fevers came on before my illness, BUT she came down with 5th disease

> after me. Anyway - I mentioned this illness () to my

> pediatrician this morning and he'd never heard of it. I was kind of

> given the " I hate armchair physicians " look. She was tested for strep

> and mono this a.m. - both negative. He's planning to send her in for

> blood work when she's feeling better.

>

> She was a very healthy infant/toddler never even had an antibiotic

> until last year when she had strep. Ibuprofen seems to help for about

> 4-5 hours when she's ill and fevers go as high as 105 sometimes. She

> is prone to canker sores as well and I've been told that she has

> enlarged tonsils/adenoids. I've never noticed if canker sores

> coincide with fevers. Overall her height and weight have been

> progressing normally and she's completely healthy between bouts. Also

> she seems to eat and drink reasonably well while ill.

>

> Am I reading too much into her symptoms? Am I jumping to conclusions

> too soon? I appreciate any feedback.

>

> Regards,

>

> W.

>

>

>

>

>

[Guest guest]

Hi ,

Sorry that you have experienced the insensitive treatment from your

doctor. I went through the same with our daughters.

I'm wondering about your daughters' fevers. The fact that there are 2

children displaying similar symptoms makes the diagnosis very

unlikely. Since is not genetic, it's very unlikely that 2

children in the same family could have it. Have you discussed the

possiblity of genetically caused fevers with your new physician? There

is a lot of info in the files section of this website. You may want

to continue your research there.

What are your daughters symptoms? Ages?

Wilke

Mother to Hana and Georgia both with HIDS

Canada

> Hi ,

>

> My name is Wagner and I am also a member of the same support

group that you've just joined. I also know the feeling of the

" armchair physician " treatment. Just recently my wife and I were

informed that our daughter, who has not shown signs or symptoms of

for months, should have probably been diagnosed with it. The

way we have found this out was by taking her sister to an urgent care

when she was displaying very similar symptoms. Through research via

various web sites, I have foun

out about the same things that it seems you have. When my wife and

I tactfully approached our physician, he gave me the same reaction

that you've received. I am not sure that he was ready to accept that

we really had done our homework. We have tried to convince him to

take a look at her record and review the lack of a diagnosis to which

he has denied our request. Unfortunately, we had to choose to get a

second opinion as well as a new physician. I hope that you do not

have to start the same way we have. I would stay after your doctor

until you get some kind of definitive answer from him/her or else look

into taking your case somewhere where they might be a little more

receptive to your opinion.

> Good luck,

> Wagner

> Father to Mychaela and Melanee

> Omaha, NE

>

> --- Original Message -----

> From: rebwelch195<mailto:rebwelch@a...>

> <mailto: >

> Sent: Monday, July 12, 2004 1:24 PM

> Subject: new member

>

>

> Hi, my name is and I have a 7 year old daughter who began

> having fevers in February. We live in central Mass. I'm totally

> uncertain if she may have or not. I found out about it while

> researching on the web. She seems to come down with a fever every 4 -

> 6 weeks and they last between 2 and 4 days. She missed quite a bit of

> school the last half of the year because of this. I only became

> suspicious about two months ago as she had a sinus infection back in

> February, a severe allergic reaction to amoxicillan, then I had a bout

> of 5th disease which I attributed to getting from her since one of her

> fevers came on before my illness, BUT she came down with 5th disease

> after me. Anyway - I mentioned this illness () to my

> pediatrician this morning and he'd never heard of it. I was kind of

> given the " I hate armchair physicians " look. She was tested for strep

> and mono this a.m. - both negative. He's planning to send her in for

> blood work when she's feeling better.

>

> She was a very healthy infant/toddler never even had an antibiotic

> until last year when she had strep. Ibuprofen seems to help for about

> 4-5 hours when she's ill and fevers go as high as 105 sometimes. She

> is prone to canker sores as well and I've been told that she has

> enlarged tonsils/adenoids. I've never noticed if canker sores

> coincide with fevers. Overall her height and weight have been

> progressing normally and she's completely healthy between bouts. Also

> she seems to eat and drink reasonably well while ill.

>

> Am I reading too much into her symptoms? Am I jumping to conclusions

> too soon? I appreciate any feedback.

>

> Regards,

>

> W.

>

>

>

>

>

[Guest guest]

Wow, My couldn't tolerate the one plus either, strange. They told me

that was highly unusual. We have trialed the one plus two separate times with

no success.

We go to the immuno on Monday to discuss treatment. His nurse already told me

that he will start the IVIG but we are waiting to talk to the immuno to see if

that is the only option. Right now, we are just looking to improve the quality

of Nick's life, he is so miserable with the constant green nose and cough.

When was your son diagnosed and what does he have... IgG.. IgA problems?

Amy

Re: new member

Welcome, I can totally relate to your son. My , 18 months, has had

14 bouts of bronchitis since Oct and 4 ear infections in one ear since that one

ear tube fell out in March. My son is also food protein intolerant. He is on

Neocate infant formula and a select variety of foods that are safe for him. He

is able to tolerant most fruits and chicken. I know that malabsorbtion and

diarrhea is related to PID but I am not totally sure about food intolerances.

What is your son on?

Amy mom to

18 months old, MSPI, GERD, Asthma, no pneumo vaccine antibodies. Normal

numbers, no function.

os

[Guest guest]

WOW from me too.. I am so excited to actually hear someone else, relate... in a

good sense of course, not that our children cannot tolerate the formula.they

told me a few children will not tolerate it, but few.. Lucky us.. I am just

pleased that there is actually a formula they can take...Conan my son has low

IGa IGG, my peditrician made the diagnosis , by mistake through random blood

work..... although he has been sick every 2 weeks .. a lot of fevers, ears,

roto, andmostly viruses... so my pedi said he never made the connection for PID

until the blood work .. We have talked to the immunologist, and he has all of

our 262 pages of pedi records, but cannot seee him till Sept 3 for treatment

options, and more tests... Arent you scared, and what type of infections did he

have.. how big is he? weight and height. my son is 26 lb and 33 in .. I say an

average kid except He looks PALE,,,

Re: new member

Welcome, I can totally relate to your son. My , 18 months, has

had 14 bouts of bronchitis since Oct and 4 ear infections in one ear since that

one ear tube fell out in March. My son is also food protein intolerant. He is

on Neocate infant formula and a select variety of foods that are safe for him.

He is able to tolerant most fruits and chicken. I know that malabsorbtion and

diarrhea is related to PID but I am not totally sure about food intolerances.

What is your son on?

Amy mom to

18 months old, MSPI, GERD, Asthma, no pneumo vaccine antibodies. Normal

numbers, no function.

os

[Guest guest]

gets recurrent bronchitis, ear and eye infections. We were told by a

doctor at an urgent care clinic to get his immune system checked. I looked back

at his old medical records and saw that he was tested and the numbers were

horrible so we had him retested. The numbers all came back normal but we wanted

further testing and that is when we found that he made no antibodies to the

pneumo vaccines. used to be off the charts weight wise and he was

placed on TPN (IV nutrition) for 3.5 months and he made it up to the 25% he is

now just slightly under that. He will be 19 months old next week and he is

about 23 to 24 lbs and 32.5 inches. is very pale and has huge dark

circles under his eyes. But he is the happiest, active kid that I have.

Am I scared? Yes and no. I think this site has helped calm a lot of my fears.

I am scared that has to go through this but I am hoping that it is

still transient and that he will outgrow it. I am glad that there is a

treatment for it. Not a desirable way to live but there are so many other

people who have it worse off than us. He is currently taking prevacid,

claritin, flovent, xopenex and albuterol. And sees an immunologist, GI,

pulmonologist, and an asthma/allergy doctor. He also sees an occupational

therapist for feeding and swallowing issues, since he didn't eat by mouth until

he was 10 months old he doesn't know how to chew and has an aversion to hard

crunchy foods.

Amy

Re: new member

WOW from me too.. I am so excited to actually hear someone else, relate... in

a good sense of course, not that our children cannot tolerate the formula.they

told me a few children will not tolerate it, but few.. Lucky us.. I am just

pleased that there is actually a formula they can take...Conan my son has low

IGa IGG, my peditrician made the diagnosis , by mistake through random blood

work..... although he has been sick every 2 weeks .. a lot of fevers, ears,

roto, andmostly viruses... so my pedi said he never made the connection for PID

until the blood work .. We have talked to the immunologist, and he has all of

our 262 pages of pedi records, but cannot seee him till Sept 3 for treatment

options, and more tests... Arent you scared, and what type of infections did he

have.. how big is he? weight and height. my son is 26 lb and 33 in .. I say an

average kid except He looks PALE,,,

[Guest guest]

Amy. what is MSPI?

Re: new member

Welcome, I can totally relate to your son. My , 18 months, has

had 14 bouts of bronchitis since Oct and 4 ear infections in one ear since that

one ear tube fell out in March. My son is also food protein intolerant. He is

on Neocate infant formula and a select variety of foods that are safe for him.

He is able to tolerant most fruits and chicken. I know that malabsorbtion and

diarrhea is related to PID but I am not totally sure about food intolerances.

What is your son on?

Amy mom to

18 months old, MSPI, GERD, Asthma, no pneumo vaccine antibodies. Normal

numbers, no function.

os

[Guest guest]

Amy. what is MSPI?

Re: new member

Welcome, I can totally relate to your son. My , 18 months, has

had 14 bouts of bronchitis since Oct and 4 ear infections in one ear since that

one ear tube fell out in March. My son is also food protein intolerant. He is

on Neocate infant formula and a select variety of foods that are safe for him.

He is able to tolerant most fruits and chicken. I know that malabsorbtion and

diarrhea is related to PID but I am not totally sure about food intolerances.

What is your son on?

Amy mom to

18 months old, MSPI, GERD, Asthma, no pneumo vaccine antibodies. Normal

numbers, no function.

os

[Guest guest]

Conan, didn't gain any weight for 6 months then they gave him polycose, and

doubled his formula scoops to 10-1/2. I also gave him donuts that I made at

home, and he gained 2 lb in two months,,, but started vomiting... something in

the donuts batter..We have a 10 year old daughter who is the greatest kid.. A

big help, sweet loves horseback riding... I myself am a city girl... COnan is

the most well behaved kid I've seen.. quiet, polite, he has a great energy about

him.. good karma and aura.. I was never into stuff like that but it was

apparent to me and others right away, he was different, in a great way.. How

about nick, he must be extraordinary. We see an allergist, GI, and now

immunologist, although we need a referal to the ENT. Do you have other kids? I

hope also hope this is transient.. how do they test for the vaccine

insufficiency? and do you notice that he is shy, especially with others..

Re: new member

WOW from me too.. I am so excited to actually hear someone else, relate...

in a good sense of course, not that our children cannot tolerate the

formula.they told me a few children will not tolerate it, but few.. Lucky us.. I

am just pleased that there is actually a formula they can take...Conan my son

has low IGa IGG, my peditrician made the diagnosis , by mistake through random

blood work..... although he has been sick every 2 weeks .. a lot of fevers,

ears, roto, andmostly viruses... so my pedi said he never made the connection

for PID until the blood work .. We have talked to the immunologist, and he has

all of our 262 pages of pedi records, but cannot seee him till Sept 3 for

treatment options, and more tests... Arent you scared, and what type of

infections did he have.. how big is he? weight and height. my son is 26 lb and

33 in .. I say an average kid except He looks PALE,,,

[Guest guest]

Conan, didn't gain any weight for 6 months then they gave him polycose, and

doubled his formula scoops to 10-1/2. I also gave him donuts that I made at

home, and he gained 2 lb in two months,,, but started vomiting... something in

the donuts batter..We have a 10 year old daughter who is the greatest kid.. A

big help, sweet loves horseback riding... I myself am a city girl... COnan is

the most well behaved kid I've seen.. quiet, polite, he has a great energy about

him.. good karma and aura.. I was never into stuff like that but it was

apparent to me and others right away, he was different, in a great way.. How

about nick, he must be extraordinary. We see an allergist, GI, and now

immunologist, although we need a referal to the ENT. Do you have other kids? I

hope also hope this is transient.. how do they test for the vaccine

insufficiency? and do you notice that he is shy, especially with others..

Re: new member

WOW from me too.. I am so excited to actually hear someone else, relate...

in a good sense of course, not that our children cannot tolerate the

formula.they told me a few children will not tolerate it, but few.. Lucky us.. I

am just pleased that there is actually a formula they can take...Conan my son

has low IGa IGG, my peditrician made the diagnosis , by mistake through random

blood work..... although he has been sick every 2 weeks .. a lot of fevers,

ears, roto, andmostly viruses... so my pedi said he never made the connection

for PID until the blood work .. We have talked to the immunologist, and he has

all of our 262 pages of pedi records, but cannot seee him till Sept 3 for

treatment options, and more tests... Arent you scared, and what type of

infections did he have.. how big is he? weight and height. my son is 26 lb and

33 in .. I say an average kid except He looks PALE,,,

[Guest guest]

is your typical toddler. He is into everything.. I haven't really

noticed him being shy, he is very likable and people seem drawn to him, I think

because of his sad puppy dog eyes. We also see an ENT, guess I forgot about

that one. is scheduled to have his second set of ear tube place on Aug

17 and he will have his sinuses irrigated then too. Oh.... MSPI is milk soy

protein intolerant, altho actually he just recently tested positive to being

allergic to milk.

I have two older kids, Kayla is 8 1/2 and has a seizure disorder. Noah is 5 1/2

and is healthy as long as he has tubes in his ears. I have Graves Disease.

When we saw the immuno he order a bunch of labs, which I am sure that your

immuno will too. They drew 7 vials out of little . It was a very

horrible day, the same day that my daughter had an MRI and EKG so we spent the

whole day at the hospital. YUCK. They can test to see if his body made the

immunity to his vaccines like he should have. Everything was normal on

except for the pneumococcal vaccine or prevnar. has had all three of

these shots so there should have been some response to it, but he didn't have

any. I am still very new to all of this and I know that some of the more

experienced moms can explain it better, but basically that part of his immune

system doesn't work.

Is Conan tube fed or does he take his formula by mouth? still takes it

all thru the bottle.

Amy

Re: new member

Conan, didn't gain any weight for 6 months then they gave him polycose, and

doubled his formula scoops to 10-1/2. I also gave him donuts that I made at

home, and he gained 2 lb in two months,,, but started vomiting... something in

the donuts batter..We have a 10 year old daughter who is the greatest kid.. A

big help, sweet loves horseback riding... I myself am a city girl... COnan is

the most well behaved kid I've seen.. quiet, polite, he has a great energy about

him.. good karma and aura.. I was never into stuff like that but it was

apparent to me and others right away, he was different, in a great way.. How

about nick, he must be extraordinary. We see an allergist, GI, and now

immunologist, although we need a referal to the ENT. Do you have other kids? I

hope also hope this is transient.. how do they test for the vaccine

insufficiency? and do you notice that he is shy, especially with others..