We are finally closer to a diagnosis... and began treatment!!!!

[Guest guest]

Hi everyone,

Well I wanted to take a moment to let you all know that we have

finally come closer to a dx for andria. We took her to see a

Rheumatologist on Thursday. Upon looking at all of my accumulating

records, blood work, and long fever logs.. he felt that she does have

Familial Mediterranean Fever Syndrome. We have begun giving her 1/2

tab of colchicine every evening. THen if the fever breaks through we

go to 1/2 tab morning and night. We have to push for the genetic

testing though. I have faxed to NIH in July but haven't heard

anything back yet. I am going to re fax this week with the new

information. Hopefully we'll hear something. Ok well enough about

me. I hope all is going well with you all.

Becky

[Guest guest]

HI Becky,

It is good that you are getting closer to a dx. I was just wondering why your

doctor is leaning towards FMF without having the genetic testing done. The ID

doc we were seeing was positive that my son had FMF since his father is Arab,

but the genetic test came back negative for all the mutations discovered thus

far. The test is about 80% accurate as they have not discovered all the

mutations yet.

Anyways, since we did the test my son has not had another fever. His last one

was 10 weeks ago. I am hoping they don't return, but won't feel comfortable

about it for a while as I know some kids have breaks. He has had nine fevers

all 6 weeks apart. The last two were 8 weeks apart, and now nothing for 10

weeks. Yeah, I brought home my newborn on the day he was supposed to get his

first fever.

Good Luck to you on getting your insurance to cover the testing. By the way

the test was $640.00 through GeneDX.

Take care,

b_rouillard95 <bribeck@...> wrote:

Hi everyone,

Well I wanted to take a moment to let you all know that we have

finally come closer to a dx for andria. We took her to see a

Rheumatologist on Thursday. Upon looking at all of my accumulating

records, blood work, and long fever logs.. he felt that she does have

Familial Mediterranean Fever Syndrome. We have begun giving her 1/2

tab of colchicine every evening. THen if the fever breaks through we

go to 1/2 tab morning and night. We have to push for the genetic

testing though. I have faxed to NIH in July but haven't heard

anything back yet. I am going to re fax this week with the new

information. Hopefully we'll hear something. Ok well enough about

me. I hope all is going well with you all.

Becky

[Guest guest]

Any one who isn't able to get their insurance company should have their

doctor talk to GeneDX. When it was looking like our insurance company was

not going to pay it sounded as though GeneDX was going to cut as at least

a small break if it was coming out of our own pocket. I don't know how

much of a break they were going to extend to us since our insurance came

through at the eleventh hour. It's worth a shot.

I also am curious, it seems there is a number of children who are getting

a break recently, including my . was also fever free last

fall. I'm wondering if any of the other parents have seen a similar

pattern.

Ellyn

Mom of possibly (4),

Alyssa(8), and Kate(3)

Philadelphia, PA

Burger <hiesersmom@...>

Sent by:

12/06/2005 11:42 AM

Please respond to

cc:

Subject: Re: We are finally closer to a diagnosis... and

began

treatment!!!!

HI Becky,

It is good that you are getting closer to a dx. I was just wondering

why your doctor is leaning towards FMF without having the genetic testing

done. The ID doc we were seeing was positive that my son had FMF since

his father is Arab, but the genetic test came back negative for all the

mutations discovered thus far. The test is about 80% accurate as they

have not discovered all the mutations yet.

Anyways, since we did the test my son has not had another fever. His

last one was 10 weeks ago. I am hoping they don't return, but won't feel

comfortable about it for a while as I know some kids have breaks. He has

had nine fevers all 6 weeks apart. The last two were 8 weeks apart, and

now nothing for 10 weeks. Yeah, I brought home my newborn on the day he

was supposed to get his first fever.

Good Luck to you on getting your insurance to cover the testing. By the

way the test was $640.00 through GeneDX.

Take care,

b_rouillard95 <bribeck@...> wrote:

Hi everyone,

Well I wanted to take a moment to let you all know that we have

finally come closer to a dx for andria. We took her to see a

Rheumatologist on Thursday. Upon looking at all of my accumulating

records, blood work, and long fever logs.. he felt that she does have

Familial Mediterranean Fever Syndrome. We have begun giving her 1/2

tab of colchicine every evening. THen if the fever breaks through we

go to 1/2 tab morning and night. We have to push for the genetic

testing though. I have faxed to NIH in July but haven't heard

anything back yet. I am going to re fax this week with the new

information. Hopefully we'll hear something. Ok well enough about

me. I hope all is going well with you all.

Becky

[Guest guest]

Hi ,

No, we're not 100% sure that it is FMF, but based on the fever

pattern and degree to which they come it sounds the most

reasonable. He does still want the gentetic testing done however

for the same reasons you stated. The medication he put her on is

very low dose and very well tolorated by children with little side

effects. If it alters the fever patterns then he feels that were

closer to some answers. Our insurence company has denied all

requests from 5 different specialists, so that's been a battle.

Thanks for the reply. Take care

Becky

--

- In , Burger <hiesersmom@s...> wrote:

>

> HI Becky,

>

> It is good that you are getting closer to a dx. I was just

wondering why your doctor is leaning towards FMF without having the

genetic testing done. The ID doc we were seeing was positive that

my son had FMF since his father is Arab, but the genetic test came

back negative for all the mutations discovered thus far. The test

is about 80% accurate as they have not discovered all the mutations

yet.

>

> Anyways, since we did the test my son has not had another

fever. His last one was 10 weeks ago. I am hoping they don't

return, but won't feel comfortable about it for a while as I know

some kids have breaks. He has had nine fevers all 6 weeks apart.

The last two were 8 weeks apart, and now nothing for 10 weeks.

Yeah, I brought home my newborn on the day he was supposed to get

his first fever.

>

> Good Luck to you on getting your insurance to cover the

testing. By the way the test was $640.00 through GeneDX.

>

> Take care,

>

>

>

> b_rouillard95 <bribeck@s...> wrote:

> Hi everyone,

>

> Well I wanted to take a moment to let you all know that we have

> finally come closer to a dx for andria. We took her to see a

> Rheumatologist on Thursday. Upon looking at all of my

accumulating

> records, blood work, and long fever logs.. he felt that she does

have

> Familial Mediterranean Fever Syndrome. We have begun giving her

1/2

> tab of colchicine every evening. THen if the fever breaks through

we

> go to 1/2 tab morning and night. We have to push for the genetic

> testing though. I have faxed to NIH in July but haven't heard

> anything back yet. I am going to re fax this week with the new

> information. Hopefully we'll hear something. Ok well enough

about

> me. I hope all is going well with you all.

>

> Becky

>

>

>

>

>

>

>

[Guest guest]

Hi Becky,

Thanks for the response. I am sorry to hear that you have had such a battle

with your insurance company. It is just such a shame that they would not

consent to testing for a documented medical condition for a child.

The ID doc treating my son did say that she had one child that tested negative

for FMF but responded well to the colchicine. Then when her parents decided to

take her off the medication her fevers resumed. I hope that the medication

works for your daughther, and from what I understand it is a very safe

medication that has been in use for a long time.

Oddly enough, my son got his fever today. So his pattern is really strange.

Good luck to you, and keep us informed on how your daughter tolerates the

medicine, and if you see any success with the treatment.

Mom to Hieser, 2 years

San Francisco

b_rouillard95 <bribeck@...> wrote:

Hi ,

No, we're not 100% sure that it is FMF, but based on the fever

pattern and degree to which they come it sounds the most

reasonable. He does still want the gentetic testing done however

for the same reasons you stated. The medication he put her on is

very low dose and very well tolorated by children with little side

effects. If it alters the fever patterns then he feels that were

closer to some answers. Our insurence company has denied all

requests from 5 different specialists, so that's been a battle.

Thanks for the reply. Take care

Becky

--

- In , Burger <hiesersmom@s...> wrote:

>

> HI Becky,

>

> It is good that you are getting closer to a dx. I was just

wondering why your doctor is leaning towards FMF without having the

genetic testing done. The ID doc we were seeing was positive that

my son had FMF since his father is Arab, but the genetic test came

back negative for all the mutations discovered thus far. The test

is about 80% accurate as they have not discovered all the mutations

yet.

>

> Anyways, since we did the test my son has not had another

fever. His last one was 10 weeks ago. I am hoping they don't

return, but won't feel comfortable about it for a while as I know

some kids have breaks. He has had nine fevers all 6 weeks apart.

The last two were 8 weeks apart, and now nothing for 10 weeks.

Yeah, I brought home my newborn on the day he was supposed to get

his first fever.

>

> Good Luck to you on getting your insurance to cover the

testing. By the way the test was $640.00 through GeneDX.

>

> Take care,

>

>

>

> b_rouillard95 <bribeck@s...> wrote:

> Hi everyone,

>

> Well I wanted to take a moment to let you all know that we have

> finally come closer to a dx for andria. We took her to see a

> Rheumatologist on Thursday. Upon looking at all of my

accumulating

> records, blood work, and long fever logs.. he felt that she does

have

> Familial Mediterranean Fever Syndrome. We have begun giving her

1/2

> tab of colchicine every evening. THen if the fever breaks through

we

> go to 1/2 tab morning and night. We have to push for the genetic

> testing though. I have faxed to NIH in July but haven't heard

> anything back yet. I am going to re fax this week with the new

> information. Hopefully we'll hear something. Ok well enough

about

> me. I hope all is going well with you all.

>

> Becky

>

>

>

>

>

>

>

[Guest guest]

,

I'm sorry about your son's fever returning. I guess like they all say just

having the breaks are welcomed. Thanks for the support. It's great to talk

to someone else who doesn't think I'm crazy or " digging for things that are

not there " .

Feel free to email me anytime.

Becky

-- Re: Re: We are finally closer to a diagnosis... and began

treatment!!!!

Hi Becky,

Thanks for the response. I am sorry to hear that you have had such a

battle with your insurance company. It is just such a shame that they would

not consent to testing for a documented medical condition for a child.

The ID doc treating my son did say that she had one child that tested

negative for FMF but responded well to the colchicine. Then when her

parents decided to take her off the medication her fevers resumed. I hope

that the medication works for your daughther, and from what I understand it

is a very safe medication that has been in use for a long time.

Oddly enough, my son got his fever today. So his pattern is really

strange.

Good luck to you, and keep us informed on how your daughter tolerates the

medicine, and if you see any success with the treatment.

Mom to Hieser, 2 years

San Francisco

b_rouillard95 <bribeck@...> wrote:

Hi ,

No, we're not 100% sure that it is FMF, but based on the fever

pattern and degree to which they come it sounds the most

reasonable. He does still want the gentetic testing done however

for the same reasons you stated. The medication he put her on is

very low dose and very well tolorated by children with little side

effects. If it alters the fever patterns then he feels that were

closer to some answers. Our insurence company has denied all

requests from 5 different specialists, so that's been a battle.

Thanks for the reply. Take care

Becky

--

- In , Burger <hiesersmom@s...> wrote:

>

> HI Becky,

>

> It is good that you are getting closer to a dx. I was just

wondering why your doctor is leaning towards FMF without having the

genetic testing done. The ID doc we were seeing was positive that

my son had FMF since his father is Arab, but the genetic test came

back negative for all the mutations discovered thus far. The test

is about 80% accurate as they have not discovered all the mutations

yet.

>

> Anyways, since we did the test my son has not had another

fever. His last one was 10 weeks ago. I am hoping they don't

return, but won't feel comfortable about it for a while as I know

some kids have breaks. He has had nine fevers all 6 weeks apart.

The last two were 8 weeks apart, and now nothing for 10 weeks.

Yeah, I brought home my newborn on the day he was supposed to get

his first fever.

>

> Good Luck to you on getting your insurance to cover the

testing. By the way the test was $640.00 through GeneDX.

>

> Take care,

>

>

>

> b_rouillard95 <bribeck@s...> wrote:

> Hi everyone,

>

> Well I wanted to take a moment to let you all know that we have

> finally come closer to a dx for andria. We took her to see a

> Rheumatologist on Thursday. Upon looking at all of my

accumulating

> records, blood work, and long fever logs.. he felt that she does

have

> Familial Mediterranean Fever Syndrome. We have begun giving her

1/2

> tab of colchicine every evening. THen if the fever breaks through

we

> go to 1/2 tab morning and night. We have to push for the genetic

> testing though. I have faxed to NIH in July but haven't heard

> anything back yet. I am going to re fax this week with the new

> information. Hopefully we'll hear something. Ok well enough

about

> me. I hope all is going well with you all.

>

> Becky

>

>

>

>

>

>

>

[Guest guest]

My daughter has also had a little break this fall. Her fevers were coming every

10-14 days, and this episode (which started today, unfortunately) was after 4

fever-free weeks. I wish it were longer, but it is a little better and I am

grateful for that. I am wondering if it could be environmental. Her fevers

definitely seem to be the worst during the warm months.

mom to Madelyn, 2

ellyn.trickey@... wrote:

Any one who isn't able to get their insurance company should have their

doctor talk to GeneDX. When it was looking like our insurance company was

not going to pay it sounded as though GeneDX was going to cut as at least

a small break if it was coming out of our own pocket. I don't know how

much of a break they were going to extend to us since our insurance came

through at the eleventh hour. It's worth a shot.

I also am curious, it seems there is a number of children who are getting

a break recently, including my . was also fever free last

fall. I'm wondering if any of the other parents have seen a similar

pattern.

Ellyn

Mom of possibly (4),

Alyssa(8), and Kate(3)

Philadelphia, PA

Burger <hiesersmom@...>

Sent by:

12/06/2005 11:42 AM

Please respond to

cc:

Subject: Re: We are finally closer to a diagnosis... and

began

treatment!!!!

HI Becky,

It is good that you are getting closer to a dx. I was just wondering

why your doctor is leaning towards FMF without having the genetic testing

done. The ID doc we were seeing was positive that my son had FMF since

his father is Arab, but the genetic test came back negative for all the

mutations discovered thus far. The test is about 80% accurate as they

have not discovered all the mutations yet.

Anyways, since we did the test my son has not had another fever. His

last one was 10 weeks ago. I am hoping they don't return, but won't feel

comfortable about it for a while as I know some kids have breaks. He has

had nine fevers all 6 weeks apart. The last two were 8 weeks apart, and

now nothing for 10 weeks. Yeah, I brought home my newborn on the day he

was supposed to get his first fever.

Good Luck to you on getting your insurance to cover the testing. By the

way the test was $640.00 through GeneDX.

Take care,

b_rouillard95 <bribeck@...> wrote:

Hi everyone,

Well I wanted to take a moment to let you all know that we have

finally come closer to a dx for andria. We took her to see a

Rheumatologist on Thursday. Upon looking at all of my accumulating

records, blood work, and long fever logs.. he felt that she does have

Familial Mediterranean Fever Syndrome. We have begun giving her 1/2

tab of colchicine every evening. THen if the fever breaks through we

go to 1/2 tab morning and night. We have to push for the genetic

testing though. I have faxed to NIH in July but haven't heard

anything back yet. I am going to re fax this week with the new

information. Hopefully we'll hear something. Ok well enough about

me. I hope all is going well with you all.

Becky

[Guest guest]

The worst time period for was two summers ago. He was in a

day-care with central air conditioning, which I really believe was a

contributing factor.

This summer I had someone come to the house to watch the kids. We have

some air conditioning - but we used it infrequently. still had

fevers, but not at the frequency of the previous summer.

Ellyn

Mom of possibly (4),

Alyssa(8), and Kate(3)

Philadelphia, PA

Yaghi <ryags@...>

Sent by:

12/07/2005 02:02 PM

Please respond to

cc:

Subject: Re: We are finally closer to a diagnosis... and

began

treatment!!!!

My daughter has also had a little break this fall. Her fevers were coming

every 10-14 days, and this episode (which started today, unfortunately)

was after 4 fever-free weeks. I wish it were longer, but it is a little

better and I am grateful for that. I am wondering if it could be

environmental. Her fevers definitely seem to be the worst during the warm

months.

mom to Madelyn, 2

ellyn.trickey@... wrote:

Any one who isn't able to get their insurance company should have their

doctor talk to GeneDX. When it was looking like our insurance company was

not going to pay it sounded as though GeneDX was going to cut as at least

a small break if it was coming out of our own pocket. I don't know how

much of a break they were going to extend to us since our insurance came

through at the eleventh hour. It's worth a shot.

I also am curious, it seems there is a number of children who are getting

a break recently, including my . was also fever free last

fall. I'm wondering if any of the other parents have seen a similar

pattern.

Ellyn

Mom of possibly (4),

Alyssa(8), and Kate(3)

Philadelphia, PA

Burger <hiesersmom@...>

Sent by:

12/06/2005 11:42 AM

Please respond to

cc:

Subject: Re: We are finally closer to a

diagnosis... and began

treatment!!!!

HI Becky,

It is good that you are getting closer to a dx. I was just wondering

why your doctor is leaning towards FMF without having the genetic testing

done. The ID doc we were seeing was positive that my son had FMF since

his father is Arab, but the genetic test came back negative for all the

mutations discovered thus far. The test is about 80% accurate as they

have not discovered all the mutations yet.

Anyways, since we did the test my son has not had another fever. His

last one was 10 weeks ago. I am hoping they don't return, but won't feel

comfortable about it for a while as I know some kids have breaks. He has

had nine fevers all 6 weeks apart. The last two were 8 weeks apart, and

now nothing for 10 weeks. Yeah, I brought home my newborn on the day he

was supposed to get his first fever.

Good Luck to you on getting your insurance to cover the testing. By the

way the test was $640.00 through GeneDX.

Take care,

b_rouillard95 <bribeck@...> wrote:

Hi everyone,

Well I wanted to take a moment to let you all know that we have

finally come closer to a dx for andria. We took her to see a

Rheumatologist on Thursday. Upon looking at all of my accumulating

records, blood work, and long fever logs.. he felt that she does have

Familial Mediterranean Fever Syndrome. We have begun giving her 1/2

tab of colchicine every evening. THen if the fever breaks through we

go to 1/2 tab morning and night. We have to push for the genetic

testing though. I have faxed to NIH in July but haven't heard

anything back yet. I am going to re fax this week with the new

information. Hopefully we'll hear something. Ok well enough about

me. I hope all is going well with you all.

Becky

[Guest guest]

Hi everybody,

My two little little girls (3) have been tested negative for FMF.

Our Doc said that even if the test was negative he thought that

there were both FMM.

At the end of July we have started the COLCHICINE and till now they

have been fever free (4 months 1/2).

Before we start this treatment they had fever every 21 days

(sometimes it was even more frequent)!

What a wonderfull medecine !

Moreover, they tolerate very well the colchine and have no trouble

due to it.

Good luck and keep us informed

ce

mom of and Léa (FMM)

and Jérémy

Paris

--

>

> Hi Becky,

>

> Thanks for the response. I am sorry to hear that you have had

such a battle with your insurance company. It is just such a shame

that they would not consent to testing for a documented medical

condition for a child.

>

> The ID doc treating my son did say that she had one child that

tested negative for FMF but responded well to the colchicine. Then

when her parents decided to take her off the medication her fevers

resumed. I hope that the medication works for your daughther, and

from what I understand it is a very safe medication that has been

in use for a long time.

>

> Oddly enough, my son got his fever today. So his pattern is

really strange.

>

> Good luck to you, and keep us informed on how your daughter

tolerates the medicine, and if you see any success with the

treatment.

>

>

> Mom to Hieser, 2 years

> San Francisco

>

>

>

> b_rouillard95 <bribeck@s...> wrote:

> Hi ,

> No, we're not 100% sure that it is FMF, but based on the fever

> pattern and degree to which they come it sounds the most

> reasonable. He does still want the gentetic testing done however

> for the same reasons you stated. The medication he put her on is

> very low dose and very well tolorated by children with little side

> effects. If it alters the fever patterns then he feels that were

> closer to some answers. Our insurence company has denied all

> requests from 5 different specialists, so that's been a battle.

> Thanks for the reply. Take care

> Becky

>

> --

> - In , Burger <hiesersmom@s...> wrote:

> >

> > HI Becky,

> >

> > It is good that you are getting closer to a dx. I was just

> wondering why your doctor is leaning towards FMF without having

the

> genetic testing done. The ID doc we were seeing was positive that

> my son had FMF since his father is Arab, but the genetic test came

> back negative for all the mutations discovered thus far. The test

> is about 80% accurate as they have not discovered all the

mutations

> yet.

> >

> > Anyways, since we did the test my son has not had another

> fever. His last one was 10 weeks ago. I am hoping they don't

> return, but won't feel comfortable about it for a while as I know

> some kids have breaks. He has had nine fevers all 6 weeks apart.

> The last two were 8 weeks apart, and now nothing for 10 weeks.

> Yeah, I brought home my newborn on the day he was supposed to get

> his first fever.

> >

> > Good Luck to you on getting your insurance to cover the

> testing. By the way the test was $640.00 through GeneDX.

> >

> > Take care,

> >

> >

> >

> > b_rouillard95 <bribeck@s...> wrote:

> > Hi everyone,

> >

> > Well I wanted to take a moment to let you all know that we have

> > finally come closer to a dx for andria. We took her to see

a

> > Rheumatologist on Thursday. Upon looking at all of my

> accumulating

> > records, blood work, and long fever logs.. he felt that she does

> have

> > Familial Mediterranean Fever Syndrome. We have begun giving her

> 1/2

> > tab of colchicine every evening. THen if the fever breaks

through

> we

> > go to 1/2 tab morning and night. We have to push for the

genetic

> > testing though. I have faxed to NIH in July but haven't heard

> > anything back yet. I am going to re fax this week with the new

> > information. Hopefully we'll hear something. Ok well enough

> about

> > me. I hope all is going well with you all.

> >

> > Becky

> >

> >

> >

> >

> >

> >

> >