Introduction

[Guest guest]

Welcome Francesca,

You will find a ton of information and support on this site. Look

through the articles, and also search the archive emails for topics that

interest you. There is so much information here - and everyone knows

what you've been going through. It sounds like you are on the right

track to diagnosis.

I'm sorry that you need this site - but at least you found us!

Ginger

Daughter - le, almost 3 years old

(fevering since 7 months, diagnosed at 15 months, T & A on

12/11/07, Fever-free since 11/16/07)

Son - Jay, 1 year old

[Guest guest]

Ginger,

Thank you, I am so glad I found this site. It is nice to meet others

that know what Periodic fever syndromes are like. I noticed in your

signaure that your daughter hasn't had any more fevers

Congratulations!That is awesome! I can't wait for that day. Do you

think that the T & A is what finally got them to stop? We just got

referred to a ENT at Valley Childrens Hospital, and we are hoping

that a T & A may stop her episodes.

[Guest guest]

Ginger,

Thank you, I am so glad I found this site. It is nice to meet others

that know what Periodic fever syndromes are like. I noticed in your

signaure that your daughter hasn't had any more fevers

Congratulations!That is awesome! I can't wait for that day. Do you

think that the T & A is what finally got them to stop? We just got

referred to a ENT at Valley Childrens Hospital, and we are hoping

that a T & A may stop her episodes.

[Guest guest]

Ginger,

Thank you, I am so glad I found this site. It is nice to meet others

that know what Periodic fever syndromes are like. I noticed in your

signaure that your daughter hasn't had any more fevers

Congratulations!That is awesome! I can't wait for that day. Do you

think that the T & A is what finally got them to stop? We just got

referred to a ENT at Valley Childrens Hospital, and we are hoping

that a T & A may stop her episodes.

[Guest guest]

Joan K wrote:

> Hi,

>

> I've been interested in commercial perfumes for a while. More

> recently I've been interested in oudh/agarwood and Middle Eastern

> perfume oils. I like sandalwood and I was fortunate enough to put

> away a bottle of Mysore sandalwood a few years ago. I'd like to make

> a perfume with a bit of it but I need to learn more about essential

> oils and perfumer's alcohol. I am also a fan of orris and I would

> like to learn more about orris butter/concrete and its use in perfumes.

Hi Joan

Welcome to the group. Read the archives, try to picture in your mind

what you want your perfume to smell like, and then ask questions here,

where we might be able to help you tweak it.

--

Anya

Anya's Garden http://AnyasGarden.com - perfumes, aromatics, classes,

consultation

Natural Perfumers Guild + blog with daily updates

1500+ member Natural Perfumery group -

/

[Guest guest]

Pam,

It is very frustrating, I know. Pfapa is a diagnosis of exclusion.

I think it is very unfortunate that so many doctors act like they

understand this disorder but don't feel the need to exclude genetic

disorders that are so similar! I know there are several people on

this group (Fran included) who have children that were given the

Pfapa diagnosis only to find out later through genetic testing that

it is something else.

My three boys each started fevering at 8 months old. is my

oldest - he never really had a predictable pattern (ie - every 21

days). His fevers would vary in frequency - as close as 2 weeks and

as far apart as 2 months. He has chills (where his hand turn blue)

abdominal issues, joint pain and rash with his fevers. We were

seeing the specialist I spoke of earlier when our middle child turned

8 months old and started fevering as well. With two fevering and the

additional symptoms we felt it was pretty clear that our children

needed further testing!

Our third son began fevering around 8 months of age as well. They

have all three tested negative for all known genetic mutations but

the researchers are working to find more about these disorders

everyday and we are hopeful that someday we'll have a solid answer.

As of now, they are just PFS.

Doctors need to know that there are different treatments and outcomes

for the different types of PFS. Just saying it's and not a big

deal because they'll out grow it is not good enough! I think that

all of our children should have the testing completed but that may be

just my opinion.

One thing is for certain - if you are ever uncomfortable about what a

doctor tells you follow your instinct!!! You are your children's only

true advocate! In my opinion, a doctor who takes these fever

syndromes lightly does not have a clear understanding of PFS.

[Guest guest]

Pam,

It is very frustrating, I know. Pfapa is a diagnosis of exclusion.

I think it is very unfortunate that so many doctors act like they

understand this disorder but don't feel the need to exclude genetic

disorders that are so similar! I know there are several people on

this group (Fran included) who have children that were given the

Pfapa diagnosis only to find out later through genetic testing that

it is something else.

My three boys each started fevering at 8 months old. is my

oldest - he never really had a predictable pattern (ie - every 21

days). His fevers would vary in frequency - as close as 2 weeks and

as far apart as 2 months. He has chills (where his hand turn blue)

abdominal issues, joint pain and rash with his fevers. We were

seeing the specialist I spoke of earlier when our middle child turned

8 months old and started fevering as well. With two fevering and the

additional symptoms we felt it was pretty clear that our children

needed further testing!

Our third son began fevering around 8 months of age as well. They

have all three tested negative for all known genetic mutations but

the researchers are working to find more about these disorders

everyday and we are hopeful that someday we'll have a solid answer.

As of now, they are just PFS.

Doctors need to know that there are different treatments and outcomes

for the different types of PFS. Just saying it's and not a big

deal because they'll out grow it is not good enough! I think that

all of our children should have the testing completed but that may be

just my opinion.

One thing is for certain - if you are ever uncomfortable about what a

doctor tells you follow your instinct!!! You are your children's only

true advocate! In my opinion, a doctor who takes these fever

syndromes lightly does not have a clear understanding of PFS.

[Guest guest]

Pam,

It is very frustrating, I know. Pfapa is a diagnosis of exclusion.

I think it is very unfortunate that so many doctors act like they

understand this disorder but don't feel the need to exclude genetic

disorders that are so similar! I know there are several people on

this group (Fran included) who have children that were given the

Pfapa diagnosis only to find out later through genetic testing that

it is something else.

My three boys each started fevering at 8 months old. is my

oldest - he never really had a predictable pattern (ie - every 21

days). His fevers would vary in frequency - as close as 2 weeks and

as far apart as 2 months. He has chills (where his hand turn blue)

abdominal issues, joint pain and rash with his fevers. We were

seeing the specialist I spoke of earlier when our middle child turned

8 months old and started fevering as well. With two fevering and the

additional symptoms we felt it was pretty clear that our children

needed further testing!

Our third son began fevering around 8 months of age as well. They

have all three tested negative for all known genetic mutations but

the researchers are working to find more about these disorders

everyday and we are hopeful that someday we'll have a solid answer.

As of now, they are just PFS.

Doctors need to know that there are different treatments and outcomes

for the different types of PFS. Just saying it's and not a big

deal because they'll out grow it is not good enough! I think that

all of our children should have the testing completed but that may be

just my opinion.

One thing is for certain - if you are ever uncomfortable about what a

doctor tells you follow your instinct!!! You are your children's only

true advocate! In my opinion, a doctor who takes these fever

syndromes lightly does not have a clear understanding of PFS.

[Guest guest]

Hi Lindsey,

Welcome to the group, this is a great place for parents to find

information or just talk to others that know what you are going

through. You asked about a good doctor that might be more familiar

with the symdrome. I would suggest asking your pediatrician for a

referal to see a rheumetologist and or an infectious disease doctor

at the childrens hospital, they will be able to run the tests to

rule out other periodic fever syndromes, as well as help manage your

childs fevers. You are doing the right thing by keeping track of the

fevers, it is always good to have a record on hand.

Sincerely,

Francesca mommy to Ally 2years 2months fevering since 8months and

Kylie 2months

[Guest guest]

Hi Lindsey,

Welcome to the group, this is a great place for parents to find

information or just talk to others that know what you are going

through. You asked about a good doctor that might be more familiar

with the symdrome. I would suggest asking your pediatrician for a

referal to see a rheumetologist and or an infectious disease doctor

at the childrens hospital, they will be able to run the tests to

rule out other periodic fever syndromes, as well as help manage your

childs fevers. You are doing the right thing by keeping track of the

fevers, it is always good to have a record on hand.

Sincerely,

Francesca mommy to Ally 2years 2months fevering since 8months and

Kylie 2months

[Guest guest]

Hi Lindsey,

Welcome to the group, this is a great place for parents to find

information or just talk to others that know what you are going

through. You asked about a good doctor that might be more familiar

with the symdrome. I would suggest asking your pediatrician for a

referal to see a rheumetologist and or an infectious disease doctor

at the childrens hospital, they will be able to run the tests to

rule out other periodic fever syndromes, as well as help manage your

childs fevers. You are doing the right thing by keeping track of the

fevers, it is always good to have a record on hand.

Sincerely,

Francesca mommy to Ally 2years 2months fevering since 8months and

Kylie 2months

[Guest guest]

- we are in North Atlanta, too. We are in Alpharetta. We have

gotten very fortunate that our pediatrician has several patients,

so he quickly identified what my daughter had after several fevers well

over 105.

We saw an immunologist at Emory for a while, but Cimetidine did not work

for my daughter. She also got quite aggressive on Prednisone, and her

fevers got to be about 10-12 days apart. So, we opted to see an ENT - he

also had had several patients, and after looking at our record of

illnesses/episodes and also at the Pediatricians records - he quickly

suggested a T & A. le has been fever free since --- she had the T & A

12/10/07 and her last episode was 11/16/07. She just turned 3 a couple

of weeks ago.

I highly recommend our pediatrician - Dr. Roy Benaroch; and our ENT -

Dr. Thomsen. I'd be happy to give you any other information if you

are interested.

ginger.hackett@...

Ginger

Daughter - le, 3 years old

(fevering since 7 months, diagnosed at 15 months, T & A on

12/11/07, Fever-free since 11/16/07)

Son - Jay, 15 months old

[Guest guest]

- we are in North Atlanta, too. We are in Alpharetta. We have

gotten very fortunate that our pediatrician has several patients,

so he quickly identified what my daughter had after several fevers well

over 105.

We saw an immunologist at Emory for a while, but Cimetidine did not work

for my daughter. She also got quite aggressive on Prednisone, and her

fevers got to be about 10-12 days apart. So, we opted to see an ENT - he

also had had several patients, and after looking at our record of

illnesses/episodes and also at the Pediatricians records - he quickly

suggested a T & A. le has been fever free since --- she had the T & A

12/10/07 and her last episode was 11/16/07. She just turned 3 a couple

of weeks ago.

I highly recommend our pediatrician - Dr. Roy Benaroch; and our ENT -

Dr. Thomsen. I'd be happy to give you any other information if you

are interested.

ginger.hackett@...

Ginger

Daughter - le, 3 years old

(fevering since 7 months, diagnosed at 15 months, T & A on

12/11/07, Fever-free since 11/16/07)

Son - Jay, 15 months old

[Guest guest]

- we are in North Atlanta, too. We are in Alpharetta. We have

gotten very fortunate that our pediatrician has several patients,

so he quickly identified what my daughter had after several fevers well

over 105.

We saw an immunologist at Emory for a while, but Cimetidine did not work

for my daughter. She also got quite aggressive on Prednisone, and her

fevers got to be about 10-12 days apart. So, we opted to see an ENT - he

also had had several patients, and after looking at our record of

illnesses/episodes and also at the Pediatricians records - he quickly

suggested a T & A. le has been fever free since --- she had the T & A

12/10/07 and her last episode was 11/16/07. She just turned 3 a couple

of weeks ago.

I highly recommend our pediatrician - Dr. Roy Benaroch; and our ENT -

Dr. Thomsen. I'd be happy to give you any other information if you

are interested.

ginger.hackett@...

Ginger

Daughter - le, 3 years old

(fevering since 7 months, diagnosed at 15 months, T & A on

12/11/07, Fever-free since 11/16/07)

Son - Jay, 15 months old

[Guest guest]

Hi Jen,

 

Our son is also 2 1/2 and has been fevering since he was 3 months old.  It took

us awhile to figure out what was going on also, many-many tests.  His cycle was

every 2 weeks and spiked 105 with a few 106 highs.  We eventually saw a

rheumatologist who prescribed naproxen for him (an anti-inflammatory similar to

motrin).  While it did not stop the fevers, it helped control them much better

than the motrin, and we would supplement the tylenol in between naproxen doses

(which are only 12 hours apart).  The trick is to get the naproxen in the system

well before the fever starts, so she recommended he take it every day because

his cycles were so close together.  His fevers became 102 with a very few at 103

high.  Much better than before, but still not gone. 

 

We just had his tonsils and adenoids removed on Aug 5th - he was due for another

fever on the 9th and didn't have it.  Next fever would be due the 23rd...we are

hoping for the best.  The surgeon said most children run a low fever from the

surgery - he never did.  If it is something you are willing to do for your son I

recommend it even though we do not know for sure if it has worked for our Tyler

yet, it has worked for many others.  The recovery at home was better than I

expected, the overnight hospital stay was very unpleasant.  He did not want to

be there at all and hated the IV.  That was the worst part, after coming home he

did very well.

 

Best Wishes to your son and your family,

Pruden

[Guest guest]

Hi Jen,

 

Our son is also 2 1/2 and has been fevering since he was 3 months old.  It took

us awhile to figure out what was going on also, many-many tests.  His cycle was

every 2 weeks and spiked 105 with a few 106 highs.  We eventually saw a

rheumatologist who prescribed naproxen for him (an anti-inflammatory similar to

motrin).  While it did not stop the fevers, it helped control them much better

than the motrin, and we would supplement the tylenol in between naproxen doses

(which are only 12 hours apart).  The trick is to get the naproxen in the system

well before the fever starts, so she recommended he take it every day because

his cycles were so close together.  His fevers became 102 with a very few at 103

high.  Much better than before, but still not gone. 

 

We just had his tonsils and adenoids removed on Aug 5th - he was due for another

fever on the 9th and didn't have it.  Next fever would be due the 23rd...we are

hoping for the best.  The surgeon said most children run a low fever from the

surgery - he never did.  If it is something you are willing to do for your son I

recommend it even though we do not know for sure if it has worked for our Tyler

yet, it has worked for many others.  The recovery at home was better than I

expected, the overnight hospital stay was very unpleasant.  He did not want to

be there at all and hated the IV.  That was the worst part, after coming home he

did very well.

 

Best Wishes to your son and your family,

Pruden

[Guest guest]

Hi Jen,

 

Our son is also 2 1/2 and has been fevering since he was 3 months old.  It took

us awhile to figure out what was going on also, many-many tests.  His cycle was

every 2 weeks and spiked 105 with a few 106 highs.  We eventually saw a

rheumatologist who prescribed naproxen for him (an anti-inflammatory similar to

motrin).  While it did not stop the fevers, it helped control them much better

than the motrin, and we would supplement the tylenol in between naproxen doses

(which are only 12 hours apart).  The trick is to get the naproxen in the system

well before the fever starts, so she recommended he take it every day because

his cycles were so close together.  His fevers became 102 with a very few at 103

high.  Much better than before, but still not gone. 

 

We just had his tonsils and adenoids removed on Aug 5th - he was due for another

fever on the 9th and didn't have it.  Next fever would be due the 23rd...we are

hoping for the best.  The surgeon said most children run a low fever from the

surgery - he never did.  If it is something you are willing to do for your son I

recommend it even though we do not know for sure if it has worked for our Tyler

yet, it has worked for many others.  The recovery at home was better than I

expected, the overnight hospital stay was very unpleasant.  He did not want to

be there at all and hated the IV.  That was the worst part, after coming home he

did very well.

 

Best Wishes to your son and your family,

Pruden

[Guest guest]

Jen - I have not posted in a few years, as we thought our son, Calder, had

outgrown . We received a cautious diagnosis when he was almost two and

we lived in Bridgeport, WV, at WVU. We are now in sburg, WV (near

you!) and it appears that Calder's fevers are returning. He has had three

fevers since May and all have responded to the prednisone. We are working

with Dr. Maina at Eastern Panhandle Pediatrics and he has read about

on his own to help us out. However, we have started to think we need to get

him back to a specialist and the infectious disease doctor we saw in

town is no longer there. He also starts pre-kindergarten in a week

and I want to explore some options regarding treatment. I would love to

compare notes regarding doctors and/or specialists.

By the way, we also had an excellent experience with our pediatricians in

Bridgeport, WV when Calder started his fevers at 3 months. After several

hospitalizations they had us come to their office and listen to a CME

lecture they had found about and then they arranged for the

consultation at WVU. We were amazed at the level of care we received!

Alyssa Sloan

[Guest guest]

Jen - I have not posted in a few years, as we thought our son, Calder, had

outgrown . We received a cautious diagnosis when he was almost two and

we lived in Bridgeport, WV, at WVU. We are now in sburg, WV (near

you!) and it appears that Calder's fevers are returning. He has had three

fevers since May and all have responded to the prednisone. We are working

with Dr. Maina at Eastern Panhandle Pediatrics and he has read about

on his own to help us out. However, we have started to think we need to get

him back to a specialist and the infectious disease doctor we saw in

town is no longer there. He also starts pre-kindergarten in a week

and I want to explore some options regarding treatment. I would love to

compare notes regarding doctors and/or specialists.

By the way, we also had an excellent experience with our pediatricians in

Bridgeport, WV when Calder started his fevers at 3 months. After several

hospitalizations they had us come to their office and listen to a CME

lecture they had found about and then they arranged for the

consultation at WVU. We were amazed at the level of care we received!

Alyssa Sloan

[Guest guest]

Jen - I have not posted in a few years, as we thought our son, Calder, had

outgrown . We received a cautious diagnosis when he was almost two and

we lived in Bridgeport, WV, at WVU. We are now in sburg, WV (near

you!) and it appears that Calder's fevers are returning. He has had three

fevers since May and all have responded to the prednisone. We are working

with Dr. Maina at Eastern Panhandle Pediatrics and he has read about

on his own to help us out. However, we have started to think we need to get

him back to a specialist and the infectious disease doctor we saw in

town is no longer there. He also starts pre-kindergarten in a week

and I want to explore some options regarding treatment. I would love to

compare notes regarding doctors and/or specialists.

By the way, we also had an excellent experience with our pediatricians in

Bridgeport, WV when Calder started his fevers at 3 months. After several

hospitalizations they had us come to their office and listen to a CME

lecture they had found about and then they arranged for the

consultation at WVU. We were amazed at the level of care we received!

Alyssa Sloan

[Guest guest]

Hi Whitney,

 

My son also has fevered every 2 weeks, but only lasting 3 days of fever. 

Sometimes a day or two more to recover completely.  It is extremely difficult

when they are that close together.  I don't know if the MD told you, but

prednisone also brings the episodes closer together.  I opted not to use it

because of that. 

 

We were referred to a rheumatologist at UC San Francisco's Children's Hospital

when our son was about 16 months old.  He had been fevering since 3 months, and

it was a long road of testing to get to that point.  The MD we saw there told us

about naproxen and we started him on that.  She said for some children it made

the fevers stop completely, but I haven't heard of it working that way for

anyone on here.  It did help the fevers drop from always peaking at 105 -106 to

102-103.  For us this made all the difference in the world.  The catch is the

naproxen had to be in the system before the fever hits.  She said if we could

predict it well enough to start about 2-3 days before.  If not, she said to give

it every day twice a day.  During fevers stop the Motrin (they are both

anti-inflammatories) and supplement with Tylenol inbetween.

 

He was on naproxen for over a year.  I always made sure he had something on his

stomach, or mixed it in food. 

 

We just had his tonsils and adenoids removed on the 5th of August.  He was due

for an episode on the 9th and didn't have one.  His next one would be due the

23rd.  We are waiting on pins and needles to see if it works for him.

 

The dark circles and pale skin you mentioned is something many of the children

with seem to have in common. 

 

Tyler only had mouth sores that I know of twice.  But he may have had them more

and not let me know since he was so young.  His lymph nodes were swollen often

during episodes, and larger with the more severe ones. 

 

Our new pediatrician actually mentioned having a T & A done when Tyler was just

turning 2.  He said to bring him in when his lymph nodes were swollen.  They

kept a record of it for insurance records to get the T & A approved. 

 

There was a study posted on here where 26 of the 27 children, who had tonsils

with or without adenoids removed, had the fevers stop afterward.  I will try to

send it to your email, I can't get it to load on the group site.  Also there is

an article by the MD who participated in the study that was in the Washington

Post that is posted here.  Search for it at the top of the messages '

study' should bring it up (you may have to look thru a few others to find it I

believe it was in June).

 

Tyler's stomach always seemed to bother him, but they never found anything in

all the testing. 

 

We never saw hbg that was abnormal.

 

I had to change doctors a few times to find one that would listen to me.  Then

we moved and I had to search again.  I actually had done research on the net and

found this group before I found a doctor who knew about it, and then he was

really only familiar with FMF.  We did DNA testing to rule out a few other

conditions before the MD's settled on .

 

It is very frustrating and disheartening to see our children go thru this and

not be able to help them or even find a professional who seems to be able to. 

Honestly, without this group I don't know what I would have done (Thanks again

to Fran for all the time you have spent keeping it going for us).

 

Hope this helps you some.

 

Pruden

Tyler Pruden 2yr8mo fevering since 3mo - T & A Aug 5th...waiting

Dylan Pruden 5 mo

[Guest guest]

Hi Whitney,

 

My son also has fevered every 2 weeks, but only lasting 3 days of fever. 

Sometimes a day or two more to recover completely.  It is extremely difficult

when they are that close together.  I don't know if the MD told you, but

prednisone also brings the episodes closer together.  I opted not to use it

because of that. 

 

We were referred to a rheumatologist at UC San Francisco's Children's Hospital

when our son was about 16 months old.  He had been fevering since 3 months, and

it was a long road of testing to get to that point.  The MD we saw there told us

about naproxen and we started him on that.  She said for some children it made

the fevers stop completely, but I haven't heard of it working that way for

anyone on here.  It did help the fevers drop from always peaking at 105 -106 to

102-103.  For us this made all the difference in the world.  The catch is the

naproxen had to be in the system before the fever hits.  She said if we could

predict it well enough to start about 2-3 days before.  If not, she said to give

it every day twice a day.  During fevers stop the Motrin (they are both

anti-inflammatories) and supplement with Tylenol inbetween.

 

He was on naproxen for over a year.  I always made sure he had something on his

stomach, or mixed it in food. 

 

We just had his tonsils and adenoids removed on the 5th of August.  He was due

for an episode on the 9th and didn't have one.  His next one would be due the

23rd.  We are waiting on pins and needles to see if it works for him.

 

The dark circles and pale skin you mentioned is something many of the children

with seem to have in common. 

 

Tyler only had mouth sores that I know of twice.  But he may have had them more

and not let me know since he was so young.  His lymph nodes were swollen often

during episodes, and larger with the more severe ones. 

 

Our new pediatrician actually mentioned having a T & A done when Tyler was just

turning 2.  He said to bring him in when his lymph nodes were swollen.  They

kept a record of it for insurance records to get the T & A approved. 

 

There was a study posted on here where 26 of the 27 children, who had tonsils

with or without adenoids removed, had the fevers stop afterward.  I will try to

send it to your email, I can't get it to load on the group site.  Also there is

an article by the MD who participated in the study that was in the Washington

Post that is posted here.  Search for it at the top of the messages '

study' should bring it up (you may have to look thru a few others to find it I

believe it was in June).

 

Tyler's stomach always seemed to bother him, but they never found anything in

all the testing. 

 

We never saw hbg that was abnormal.

 

I had to change doctors a few times to find one that would listen to me.  Then

we moved and I had to search again.  I actually had done research on the net and

found this group before I found a doctor who knew about it, and then he was

really only familiar with FMF.  We did DNA testing to rule out a few other

conditions before the MD's settled on .

 

It is very frustrating and disheartening to see our children go thru this and

not be able to help them or even find a professional who seems to be able to. 

Honestly, without this group I don't know what I would have done (Thanks again

to Fran for all the time you have spent keeping it going for us).

 

Hope this helps you some.

 

Pruden

Tyler Pruden 2yr8mo fevering since 3mo - T & A Aug 5th...waiting

Dylan Pruden 5 mo

[Guest guest]

Hi Whitney,

 

My son also has fevered every 2 weeks, but only lasting 3 days of fever. 

Sometimes a day or two more to recover completely.  It is extremely difficult

when they are that close together.  I don't know if the MD told you, but

prednisone also brings the episodes closer together.  I opted not to use it

because of that. 

 

We were referred to a rheumatologist at UC San Francisco's Children's Hospital

when our son was about 16 months old.  He had been fevering since 3 months, and

it was a long road of testing to get to that point.  The MD we saw there told us

about naproxen and we started him on that.  She said for some children it made

the fevers stop completely, but I haven't heard of it working that way for

anyone on here.  It did help the fevers drop from always peaking at 105 -106 to

102-103.  For us this made all the difference in the world.  The catch is the

naproxen had to be in the system before the fever hits.  She said if we could

predict it well enough to start about 2-3 days before.  If not, she said to give

it every day twice a day.  During fevers stop the Motrin (they are both

anti-inflammatories) and supplement with Tylenol inbetween.

 

He was on naproxen for over a year.  I always made sure he had something on his

stomach, or mixed it in food. 

 

We just had his tonsils and adenoids removed on the 5th of August.  He was due

for an episode on the 9th and didn't have one.  His next one would be due the

23rd.  We are waiting on pins and needles to see if it works for him.

 

The dark circles and pale skin you mentioned is something many of the children

with seem to have in common. 

 

Tyler only had mouth sores that I know of twice.  But he may have had them more

and not let me know since he was so young.  His lymph nodes were swollen often

during episodes, and larger with the more severe ones. 

 

Our new pediatrician actually mentioned having a T & A done when Tyler was just

turning 2.  He said to bring him in when his lymph nodes were swollen.  They

kept a record of it for insurance records to get the T & A approved. 

 

There was a study posted on here where 26 of the 27 children, who had tonsils

with or without adenoids removed, had the fevers stop afterward.  I will try to

send it to your email, I can't get it to load on the group site.  Also there is

an article by the MD who participated in the study that was in the Washington

Post that is posted here.  Search for it at the top of the messages '

study' should bring it up (you may have to look thru a few others to find it I

believe it was in June).

 

Tyler's stomach always seemed to bother him, but they never found anything in

all the testing. 

 

We never saw hbg that was abnormal.

 

I had to change doctors a few times to find one that would listen to me.  Then

we moved and I had to search again.  I actually had done research on the net and

found this group before I found a doctor who knew about it, and then he was

really only familiar with FMF.  We did DNA testing to rule out a few other

conditions before the MD's settled on .

 

It is very frustrating and disheartening to see our children go thru this and

not be able to help them or even find a professional who seems to be able to. 

Honestly, without this group I don't know what I would have done (Thanks again

to Fran for all the time you have spent keeping it going for us).

 

Hope this helps you some.

 

Pruden

Tyler Pruden 2yr8mo fevering since 3mo - T & A Aug 5th...waiting

Dylan Pruden 5 mo

[Guest guest]

Hi Suzi,

 

I am from Minnetrista MN...near Minnetonka. My son started fevering around 6

months old. He fevered like clockwork until recently...we had a Tonsillectomy

and an Adenoidectomy done 2 months ago. He hasn't fevered since . He is now 3

and a half. I waited on the T & A for 2 years. After 2 years of his suffering,

endless nights of crying, and 1 febrile seizure...I was desperate for a cure. We

got the diagnosis from an Infectious Disease Doctor named Dr. Belani at

Children's Hospital (Minneapolis). After a year of trying Singulair we found a

wonderful ENT named Dr. Lander. He is with Pediatric ENT Associates of

Minneapolis connected to Children's Hospital. Both Dr. Belani and Dr. Lander are

very familiar with .  After joining this site and reading all the success

stories about kids being cured by a T & A we decided to have Dr. Lander

remove the Tonsils and Adenoids. Best decision we ever made. My son has been so

happy

and healthy since the surgery. If you need any contact information for these

Doctors or have any other questions related to ...feel free to ask me.

 

Hang in there! I know how hard it is to take care of a fevering child! I've

lived it for 3 years. This site is a blessing. You will find many

supportive/informative parents on here!

 

Amy- Mom to -age 3.5- T & A 2 months ago-doing great

[Guest guest]

Hi Suzi,

 

I am from Minnetrista MN...near Minnetonka. My son started fevering around 6

months old. He fevered like clockwork until recently...we had a Tonsillectomy

and an Adenoidectomy done 2 months ago. He hasn't fevered since . He is now 3

and a half. I waited on the T & A for 2 years. After 2 years of his suffering,

endless nights of crying, and 1 febrile seizure...I was desperate for a cure. We

got the diagnosis from an Infectious Disease Doctor named Dr. Belani at

Children's Hospital (Minneapolis). After a year of trying Singulair we found a

wonderful ENT named Dr. Lander. He is with Pediatric ENT Associates of

Minneapolis connected to Children's Hospital. Both Dr. Belani and Dr. Lander are

very familiar with .  After joining this site and reading all the success

stories about kids being cured by a T & A we decided to have Dr. Lander

remove the Tonsils and Adenoids. Best decision we ever made. My son has been so

happy

and healthy since the surgery. If you need any contact information for these

Doctors or have any other questions related to ...feel free to ask me.

 

Hang in there! I know how hard it is to take care of a fevering child! I've

lived it for 3 years. This site is a blessing. You will find many

supportive/informative parents on here!

 

Amy- Mom to -age 3.5- T & A 2 months ago-doing great