Re: Letting Run its Natural Course?

[Guest guest]

Until we were able to determine , I did have to let the fevers

run their course. Unfortunately, 's fevers were so high that

Motrin did not work. I had to cover him with cold clothes, just to

try to keep him comfortable. The episode he had in November was the

worst one he had and I couldn't get his fever down no matter what I

tried. The next episode in December, we were able to use the

Prednisone. The fever was gone the next day. In my opinion, this

was interrupting his normal childhood. Since mid-August, he has

already missed 12 days of school...that's me missing 12 days of work

as well. The Prednisone helps us regain our normalcy.

Tracey

, 4 years old, fevering for 10 months.

[Guest guest]

, I certainly can't blame you for being hesitant to fill that script. My

son didn't start on Colchicine til he was 8 years old and even then, after

researching that drug on the internet, I didn't want him to have it either.

I'll tell you some things that I have learned along the way, not to try to

sway you either way but just to help inform.

Colcicine has been around for a very long time and at first, used mainly to

treat gout but through studies, found to be a treatment for FMF.

While your child may not have a definitive diagnosis of FMF (familial

mediterranean fever), Colchicine is often used to diagnose because it only helps

with FMF. It has no effect if your child has any of the other genetic disorders

or . Some docs will do a couple months trial of it to see if it helps. If

it does, meaning it decreases both the frequency and severity of episodes, then

that is pretty much a diagnosis of FMF in itself. If it doesn't help at all, the

doc may decide to either test for one of the other disorders. Granted, there is

a very small population of FMF'ers (I believe about 5 % who are not helped by

Colchicine)

If your child does have FMF, then they need to be on Colchicine. The reason

for this is that people with FMF can develope a condition called amyloidosis

which can be fatal if left untreated. There are several different gene mutations

which can cause FMF and some are more prone to develope amyloidosis than others.

I read a post a few days ago where someone said that a patient on Colchicine

does not need to be monitored. According to NIH, that is very incorrect! Labs to

monitor the effect of the colchicine on the liver need to be done every 6

months, as well as labs to monitor FMF's effect on the kidneys.

While Colchine may at first cause diarrhea, for the most part this is minimal

and resolves within a couple of weeks after starting the drug. The dosage also

needs to be adjusted as your child grows. You may see episodes start to return

gradually and you'll know that it's time for an increase!

I think that those were the main points that I wanted to get across. If you

have any more questions, feel free to ask! As a parent, you are your childs

biggest advocate and in the end, decisions like 'to medicate or not to medicate'

are up to you so anything you can do to keep yourself informed is important.

Good luck!

Pat Bombardier, mom to PJ, 15 years old, Virginia

---------------------------------

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[Guest guest]

, I certainly can't blame you for being hesitant to fill that script. My

son didn't start on Colchicine til he was 8 years old and even then, after

researching that drug on the internet, I didn't want him to have it either.

I'll tell you some things that I have learned along the way, not to try to

sway you either way but just to help inform.

Colcicine has been around for a very long time and at first, used mainly to

treat gout but through studies, found to be a treatment for FMF.

While your child may not have a definitive diagnosis of FMF (familial

mediterranean fever), Colchicine is often used to diagnose because it only helps

with FMF. It has no effect if your child has any of the other genetic disorders

or . Some docs will do a couple months trial of it to see if it helps. If

it does, meaning it decreases both the frequency and severity of episodes, then

that is pretty much a diagnosis of FMF in itself. If it doesn't help at all, the

doc may decide to either test for one of the other disorders. Granted, there is

a very small population of FMF'ers (I believe about 5 % who are not helped by

Colchicine)

If your child does have FMF, then they need to be on Colchicine. The reason

for this is that people with FMF can develope a condition called amyloidosis

which can be fatal if left untreated. There are several different gene mutations

which can cause FMF and some are more prone to develope amyloidosis than others.

I read a post a few days ago where someone said that a patient on Colchicine

does not need to be monitored. According to NIH, that is very incorrect! Labs to

monitor the effect of the colchicine on the liver need to be done every 6

months, as well as labs to monitor FMF's effect on the kidneys.

While Colchine may at first cause diarrhea, for the most part this is minimal

and resolves within a couple of weeks after starting the drug. The dosage also

needs to be adjusted as your child grows. You may see episodes start to return

gradually and you'll know that it's time for an increase!

I think that those were the main points that I wanted to get across. If you

have any more questions, feel free to ask! As a parent, you are your childs

biggest advocate and in the end, decisions like 'to medicate or not to medicate'

are up to you so anything you can do to keep yourself informed is important.

Good luck!

Pat Bombardier, mom to PJ, 15 years old, Virginia

---------------------------------

Looking for last minute shopping deals? Find them fast with Search.

[Guest guest]

, I certainly can't blame you for being hesitant to fill that script. My

son didn't start on Colchicine til he was 8 years old and even then, after

researching that drug on the internet, I didn't want him to have it either.

I'll tell you some things that I have learned along the way, not to try to

sway you either way but just to help inform.

Colcicine has been around for a very long time and at first, used mainly to

treat gout but through studies, found to be a treatment for FMF.

While your child may not have a definitive diagnosis of FMF (familial

mediterranean fever), Colchicine is often used to diagnose because it only helps

with FMF. It has no effect if your child has any of the other genetic disorders

or . Some docs will do a couple months trial of it to see if it helps. If

it does, meaning it decreases both the frequency and severity of episodes, then

that is pretty much a diagnosis of FMF in itself. If it doesn't help at all, the

doc may decide to either test for one of the other disorders. Granted, there is

a very small population of FMF'ers (I believe about 5 % who are not helped by

Colchicine)

If your child does have FMF, then they need to be on Colchicine. The reason

for this is that people with FMF can develope a condition called amyloidosis

which can be fatal if left untreated. There are several different gene mutations

which can cause FMF and some are more prone to develope amyloidosis than others.

I read a post a few days ago where someone said that a patient on Colchicine

does not need to be monitored. According to NIH, that is very incorrect! Labs to

monitor the effect of the colchicine on the liver need to be done every 6

months, as well as labs to monitor FMF's effect on the kidneys.

While Colchine may at first cause diarrhea, for the most part this is minimal

and resolves within a couple of weeks after starting the drug. The dosage also

needs to be adjusted as your child grows. You may see episodes start to return

gradually and you'll know that it's time for an increase!

I think that those were the main points that I wanted to get across. If you

have any more questions, feel free to ask! As a parent, you are your childs

biggest advocate and in the end, decisions like 'to medicate or not to medicate'

are up to you so anything you can do to keep yourself informed is important.

Good luck!

Pat Bombardier, mom to PJ, 15 years old, Virginia

---------------------------------

Looking for last minute shopping deals? Find them fast with Search.

[Guest guest]

Hi ,

Our daughter Hannah is almost 4 now and started fevering at around 10

months. For about 8 months we dealt with the fevers believing it was a

virus, using Tylenol and Motrin. Then we had moved, changed doctors,

and we became suspisious and had a pedi who was really searching, so

we did a few tests to exclude other illnesses, etc., then went to see

Infectious Dis. Doc who diagnosed her with and said we could use

Predn. So ever since then, we only take her to the Doc when we are not

sure what is going on or when she has a 'real' thing (which does not

happen often as she is extremely healhty in between fevers) and for

regular check-ups. Even though we minimized her doctors visits she

hates them and is very opinionated about not going ( " I am fine

already, no, nothing hurts, etc.). We have used predn. a few times and

always keep it at home for emergencies, like vacations, birthdays,

other important holidays, or important work stuff, ... Generally, we

only use tylenol chewables b/c it is the ONLY thing she takes

volntarily. A year ago we wanted to try tagamet b/c we felt it was a

fairly harmless drug but we could not get her to take it, we really

really tried every way of doing it, no success (I followed all

suggestions and more that I got from this listserve).

Anyway, all this to say that we generally feel that we don't have to

'treat' since with there is nothing to treat other than lowering

the fever and make her feel better. Over the last six to ten months

the episodes have become more sporadic, less than once a month, and

soemtimes they only last for a day (without predn.), or she has some

joint pain and stomach ache but the fever never comes... However, I

don't dare to say yet that she is growing out of them. I used to write

it down on the calendar, now we just try to live our life and when it

comes we deal with it. We have a very cooperative all day private

pre-school, where they call me and would tell me when she starts a

headache and gets warm, they give her tylenol and she generally gets

through the day since the fever really onsets at night. I have not

even measured her fevered in two years. I know when she is warm, when

she is hot, and when she is really really hot. Her general symptoms

are headaches, joint pain usually in knees and feet, stomach ache and

the actual fever (with some vomiting when it rises too high while she

sleeps or when the belly hurts too much).

She is a true hero, a very well adjusted and happy child, absolutely

normal development, and while I wish that these fevers would just

finally stop and we did have rough times, I am at a point where I know

it could be much much worse. Long answer to a short question - but I

think it is absolutely ok to have run its natural way - I think

about this as an immature and in many ways overactive immune system so

over the long run I am sure it will start being 'normal " .

best of luck with your decision on what to do, but don't feel like you

have to do more than keeping the fever down, do what makes your child

feel normal and ok.

Durham, NC

[Guest guest]

Hi ,

Our daughter Hannah is almost 4 now and started fevering at around 10

months. For about 8 months we dealt with the fevers believing it was a

virus, using Tylenol and Motrin. Then we had moved, changed doctors,

and we became suspisious and had a pedi who was really searching, so

we did a few tests to exclude other illnesses, etc., then went to see

Infectious Dis. Doc who diagnosed her with and said we could use

Predn. So ever since then, we only take her to the Doc when we are not

sure what is going on or when she has a 'real' thing (which does not

happen often as she is extremely healhty in between fevers) and for

regular check-ups. Even though we minimized her doctors visits she

hates them and is very opinionated about not going ( " I am fine

already, no, nothing hurts, etc.). We have used predn. a few times and

always keep it at home for emergencies, like vacations, birthdays,

other important holidays, or important work stuff, ... Generally, we

only use tylenol chewables b/c it is the ONLY thing she takes

volntarily. A year ago we wanted to try tagamet b/c we felt it was a

fairly harmless drug but we could not get her to take it, we really

really tried every way of doing it, no success (I followed all

suggestions and more that I got from this listserve).

Anyway, all this to say that we generally feel that we don't have to

'treat' since with there is nothing to treat other than lowering

the fever and make her feel better. Over the last six to ten months

the episodes have become more sporadic, less than once a month, and

soemtimes they only last for a day (without predn.), or she has some

joint pain and stomach ache but the fever never comes... However, I

don't dare to say yet that she is growing out of them. I used to write

it down on the calendar, now we just try to live our life and when it

comes we deal with it. We have a very cooperative all day private

pre-school, where they call me and would tell me when she starts a

headache and gets warm, they give her tylenol and she generally gets

through the day since the fever really onsets at night. I have not

even measured her fevered in two years. I know when she is warm, when

she is hot, and when she is really really hot. Her general symptoms

are headaches, joint pain usually in knees and feet, stomach ache and

the actual fever (with some vomiting when it rises too high while she

sleeps or when the belly hurts too much).

She is a true hero, a very well adjusted and happy child, absolutely

normal development, and while I wish that these fevers would just

finally stop and we did have rough times, I am at a point where I know

it could be much much worse. Long answer to a short question - but I

think it is absolutely ok to have run its natural way - I think

about this as an immature and in many ways overactive immune system so

over the long run I am sure it will start being 'normal " .

best of luck with your decision on what to do, but don't feel like you

have to do more than keeping the fever down, do what makes your child

feel normal and ok.

Durham, NC

[Guest guest]

My 4 year old has and until about 6 months ago we did not have and name

for his fevers or a treatment He suffered a lot with very high fevers for 6 to

8 days and every 6 weeks Although is not life threating did does alter

their quality of life My son has missed out on mant Birthday parties and days

of preschool and playdates because of fevers not to mention he is absolutely

miserable when he is sick So far the prendisone was helping and cut he fever

time down to 1 day He feels better but now the prendisone does not seem to be

doing the trick but I am glad that I tried it Good luck

Amy

[Guest guest]

~

I treated my son with only Tylenol and Motrin also. He seemed to be fine once

the medicine kicked in but once it wore off he was back on the couch and looking

like he was dying. BOYS! I think that if you are comfortable with that treatment

then you should continue with it. I have the Prednisone in my possession but

have never used it. I have heard so many negative things about it. If these

episodes aren't affecting your life too much at this point I would continue with

what you are doing. My son is 5 and has had the fevers since he was tiny. He has

missed many days of school and me of work, so we have opted to do a T & A in Feb.

and are hoping that that will be our cure! I will let you know how it goes.

Lynden, WA

[Guest guest]

Hi -

We opted for the steroids b/c it was (and is) so hard for us to see our little

one suffer for 3-5 days and the Tylenol and Motrin did not work for long. I did

not like how much medication she was getting over the fever period (alternating

every three hours Tylenol and Motrin). The steroids also gave us a more

" normal " life together and she could enjoy all the things she was missing out

on. There also have been times I did not know if it was or a virus so we

let it ride out.

We tried the Tagamet for a few months and she still fevered. We give her 1 tsp

of Orapred when the fever gets over 102 and the fever goes away until the next

episode (there were a few times it came back after and day or two). At 1st the

fevers came back quicker than before, but it resolved itself. This is only our

experience and we do not know anyone else personally with , but there area

a few new cases our pediatrician diagnosed recently.

Hope this helps.

Lynn