Introduction

June 22, 2004

I Tania and welcome.

Is your doctor planning to do genetic testing for FMF, TRAPS and HIDS?

Rosemarie

Mom to Danny age 10

Denver, CO

June 22, 2004

I am not quite sure what you are referring to. I know that he is

testing to rule out cyclic neutropenia, familial Meddieterranean

fever (oh i guess this must be FMF) because I am Lebanese, and

Behcet Syndrome. I am not sure what the other ones are that you are

talking about. please explain.

Thanks

Tania

's mom- Age 5

Torrington, CT

> I Tania and welcome.

>

> Is your doctor planning to do genetic testing for FMF, TRAPS and

HIDS?

>

> Rosemarie

> Mom to Danny age 10

> Denver, CO

June 22, 2004

I am not quite sure what you are referring to. I know that he is

testing to rule out cyclic neutropenia, familial Meddieterranean

fever (oh i guess this must be FMF) because I am Lebanese, and

Behcet Syndrome. I am not sure what the other ones are that you are

talking about. please explain.

Thanks

Tania

's mom- Age 5

Torrington, CT

> I Tania and welcome.

>

> Is your doctor planning to do genetic testing for FMF, TRAPS and

HIDS?

>

> Rosemarie

> Mom to Danny age 10

> Denver, CO

June 22, 2004

Hi Tania,

My son Drew, who is 2 1/2, was diagnosed with about a year

ago. He has pretty much every symptom with episodes, fevers to 104,

swollen lymph nodes, swollen tonsils, and mouth sores. He also had

lyme disease a few months after he was diagnosed. I would have

dismissed the lyme disease as a fever episode, as they looked exactly

the same with the exception that he had had a rash on his leg for

about a week prior (and then the positive blood tests for lyme). So

can look just like lyme disease-

Waiting for all the blood tests can be frustrating- but hang in

there. Welcome to the group!

mom to Drew, age 2

Coventry RI

June 22, 2004

Hi Tania,

My son Drew, who is 2 1/2, was diagnosed with about a year

ago. He has pretty much every symptom with episodes, fevers to 104,

swollen lymph nodes, swollen tonsils, and mouth sores. He also had

lyme disease a few months after he was diagnosed. I would have

dismissed the lyme disease as a fever episode, as they looked exactly

the same with the exception that he had had a rash on his leg for

about a week prior (and then the positive blood tests for lyme). So

can look just like lyme disease-

Waiting for all the blood tests can be frustrating- but hang in

there. Welcome to the group!

mom to Drew, age 2

Coventry RI

June 23, 2004

HIDS and TRAPS are other periodic fever conditions that have genetic

markers. If you check the archives and the articles on file, there is a lot

of information about both of them. After talking to Janet , Dr.

Kastner's nurse/assistant at National Institute of Health in D.C., we had

our son tested for FMF because I'm Italian and TRAPS because my husband is

Irish/German. Janet Jone's contact information is also available in the

archives. I'm sorry I don't have it handy right now or I'd give it to you.

Rosemarie

Mom to Danny age 10

Denver, CO

Re: Introduction

> I am not quite sure what you are referring to. I know that he is

> testing to rule out cyclic neutropenia, familial Meddieterranean

> fever (oh i guess this must be FMF) because I am Lebanese, and

> Behcet Syndrome. I am not sure what the other ones are that you are

> talking about. please explain.

>

> Thanks

> Tania

> 's mom- Age 5

> Torrington, CT

>

> > I Tania and welcome.

> >

> > Is your doctor planning to do genetic testing for FMF, TRAPS and

> HIDS?

> >

> > Rosemarie

> > Mom to Danny age 10

> > Denver, CO

>

June 23, 2004

HIDS and TRAPS are other periodic fever conditions that have genetic

markers. If you check the archives and the articles on file, there is a lot

of information about both of them. After talking to Janet , Dr.

Kastner's nurse/assistant at National Institute of Health in D.C., we had

our son tested for FMF because I'm Italian and TRAPS because my husband is

Irish/German. Janet Jone's contact information is also available in the

archives. I'm sorry I don't have it handy right now or I'd give it to you.

Rosemarie

Mom to Danny age 10

Denver, CO

Re: Introduction

> I am not quite sure what you are referring to. I know that he is

> testing to rule out cyclic neutropenia, familial Meddieterranean

> fever (oh i guess this must be FMF) because I am Lebanese, and

> Behcet Syndrome. I am not sure what the other ones are that you are

> talking about. please explain.

>

> Thanks

> Tania

> 's mom- Age 5

> Torrington, CT

>

> > I Tania and welcome.

> >

> > Is your doctor planning to do genetic testing for FMF, TRAPS and

> HIDS?

> >

> > Rosemarie

> > Mom to Danny age 10

> > Denver, CO

>

August 23, 2004

Marie,

I am so sorry to hear of all the terrible things you have gone

through. I hope you find support in this group. My daughter also

has hit 107+ and it is very scary. Fortunately i was able to keep

her hydrated with popsicles and pedialite. Alternating the Motrin

and Tylenol also helps too. I have never used steriods but others

in the group has had very good success with them.

Keep the Faith and God Bless

you and your family.

Hegelein

Southampton, NJ

-- In , " ahahahni1 " <ahahahni1@y...> wrote:

> I am glad to have found this list. I feel so overwhelmed currently

> and just feel so frustrated. Let me first give an intro on myslef.

My

> name is Marie Mac and I have two children Madalyn age 9 and

> (10 mo almost 11 mo). has been very healthy since he

> was about 4 mo old. He never even had a ear infection yet! When he

> was 8 mo old my milk dried up so we stopped breastfeeding. He

started

> to use formula. In June 2004 he developed a high fever 107.8! We

took

> him to ER they said he had pneumonia which I thoiught was werid

since

> has hasn't even wheezed. They tried to get him an IV and evetually

> succeded. They gaev him a shot of rosephin and tried to send us

home.

> I raised a big deal since he wasn't eatign and drinking and they

> were going to send us home and todl us to give him an antiboic and

> switch Ibu and tylenol every 4 hours. They called my reg doc and

the

> doc requested they send us to Cook's children hospital in Fort

Worth,

> TX. An ambulance took us there. After the doc looked him over he

said

> he only had a virus and sent us home after givign him a full dose

of

> Iv's and more intraveinous antibotics. The fever evetualy subsided

> and he was back to normal. In July he got fever again this tiem

> highest was 106.9. He had diarehha this time. First tiem he had it

> there were no other symptoms. They checked him for a lot of

different

> things. He had a cat scan and upper and lower GI. They thought he

> had C-dif and sent off culture and it was neg. They thought he had

> crohns and that was teh reason for the GI's. He was in hospital 5

> days. He was really dehydrated with this one too and had a hard

time

> with Iv's and takign blood. IN Aug he got in again and thsi tiem

it

> was highest 106.8. No other symptoms. I called doc and he called

> infectious disese doctor at Cook's CHildrens. We went to ER and

saw

> an ER doc since Infectiuos doc was not able to make it in that

night.

> They gave him ibuprofen adn took labs. The doc saw him while he

was

> actibg okay since fever was down and said it probably a virus adn

> will send us home. I just lost it and asked him why would he send

a

> baby hoem with high fever that is not eatign or drinking? Adn

> stressed to him again thsi was not a virus and he gets it

regulrly.

> He seemed to clow us off and said he'd wait for labs. s

fever

> went up again to 106. He got like a " hot puddle " just floppy and

> weak. I todl them to call that doc in to look at him. He came adn

> was as he said " quite impressed with difference " . He also said

white

> blood cells were high and so were sed? test results. He said he

woudl

> call the infectiuos disesae doc again. Suprise, Surprise they

> admitted us. He was in for 4 days and was very dehydrated. At one

> tiem the only place they could take blood or get an IV in was his

> head. He's always perk right up when fever was down due to meds

but

> wasn't eating or drinking till 4th day hospital stay and 5th day

> illness. THey checked him from everything from HIV to Cat scratch

> fever. The doctor thinks he has and sent us hoem with a

> prescription for steroid just in case. We are suppossed to call

her

> when he has next episode because she wants to see him when it

first

> starts. She'd liek to administer Steroid if its during week or

she's

> on call but she gave us a steroid prescription just in case we

aren't

> able to see her. He is fine for now and we just dread the next

three

> to four weeks. Do you all have so many problems with dehydration?

Do

> your kids have to be hospitalized frequently? How well does the

> steriod work?

>

> Marie

>

> Mom to 10 mo (almost 11 mo), and Madalyn age 9 in

> ville, Texas

August 23, 2004

Marie,

I am so sorry to hear of all the terrible things you have gone

through. I hope you find support in this group. My daughter also

has hit 107+ and it is very scary. Fortunately i was able to keep

her hydrated with popsicles and pedialite. Alternating the Motrin

and Tylenol also helps too. I have never used steriods but others

in the group has had very good success with them.

Keep the Faith and God Bless

you and your family.

Hegelein

Southampton, NJ

-- In , " ahahahni1 " <ahahahni1@y...> wrote:

> I am glad to have found this list. I feel so overwhelmed currently

> and just feel so frustrated. Let me first give an intro on myslef.

My

> name is Marie Mac and I have two children Madalyn age 9 and

> (10 mo almost 11 mo). has been very healthy since he

> was about 4 mo old. He never even had a ear infection yet! When he

> was 8 mo old my milk dried up so we stopped breastfeeding. He

started

> to use formula. In June 2004 he developed a high fever 107.8! We

took

> him to ER they said he had pneumonia which I thoiught was werid

since

> has hasn't even wheezed. They tried to get him an IV and evetually

> succeded. They gaev him a shot of rosephin and tried to send us

home.

> I raised a big deal since he wasn't eatign and drinking and they

> were going to send us home and todl us to give him an antiboic and

> switch Ibu and tylenol every 4 hours. They called my reg doc and

the

> doc requested they send us to Cook's children hospital in Fort

Worth,

> TX. An ambulance took us there. After the doc looked him over he

said

> he only had a virus and sent us home after givign him a full dose

of

> Iv's and more intraveinous antibotics. The fever evetualy subsided

> and he was back to normal. In July he got fever again this tiem

> highest was 106.9. He had diarehha this time. First tiem he had it

> there were no other symptoms. They checked him for a lot of

different

> things. He had a cat scan and upper and lower GI. They thought he

> had C-dif and sent off culture and it was neg. They thought he had

> crohns and that was teh reason for the GI's. He was in hospital 5

> days. He was really dehydrated with this one too and had a hard

time

> with Iv's and takign blood. IN Aug he got in again and thsi tiem

it

> was highest 106.8. No other symptoms. I called doc and he called

> infectious disese doctor at Cook's CHildrens. We went to ER and

saw

> an ER doc since Infectiuos doc was not able to make it in that

night.

> They gave him ibuprofen adn took labs. The doc saw him while he

was

> actibg okay since fever was down and said it probably a virus adn

> will send us home. I just lost it and asked him why would he send

a

> baby hoem with high fever that is not eatign or drinking? Adn

> stressed to him again thsi was not a virus and he gets it

regulrly.

> He seemed to clow us off and said he'd wait for labs. s

fever

> went up again to 106. He got like a " hot puddle " just floppy and

> weak. I todl them to call that doc in to look at him. He came adn

> was as he said " quite impressed with difference " . He also said

white

> blood cells were high and so were sed? test results. He said he

woudl

> call the infectiuos disesae doc again. Suprise, Surprise they

> admitted us. He was in for 4 days and was very dehydrated. At one

> tiem the only place they could take blood or get an IV in was his

> head. He's always perk right up when fever was down due to meds

but

> wasn't eating or drinking till 4th day hospital stay and 5th day

> illness. THey checked him from everything from HIV to Cat scratch

> fever. The doctor thinks he has and sent us hoem with a

> prescription for steroid just in case. We are suppossed to call

her

> when he has next episode because she wants to see him when it

first

> starts. She'd liek to administer Steroid if its during week or

she's

> on call but she gave us a steroid prescription just in case we

aren't

> able to see her. He is fine for now and we just dread the next

three

> to four weeks. Do you all have so many problems with dehydration?

Do

> your kids have to be hospitalized frequently? How well does the

> steriod work?

>

> Marie

>

> Mom to 10 mo (almost 11 mo), and Madalyn age 9 in

> ville, Texas

August 23, 2004

Ok, Fran. I am evil. I STILL have not brought all those surveys over to

the hospital. I've just been swamped! Mike is still out of town and the

kids seem to have something everyday plus I've had a lot of legal work of

late. I will do it, however!!!!

Rosemarie

introduction

> I am glad to have found this list. I feel so overwhelmed currently

> and just feel so frustrated. Let me first give an intro on myslef. My

> name is Marie Mac and I have two children Madalyn age 9 and

> (10 mo almost 11 mo). has been very healthy since he

> was about 4 mo old. He never even had a ear infection yet! When he

> was 8 mo old my milk dried up so we stopped breastfeeding. He started

> to use formula. In June 2004 he developed a high fever 107.8! We took

> him to ER they said he had pneumonia which I thoiught was werid since

> has hasn't even wheezed. They tried to get him an IV and evetually

> succeded. They gaev him a shot of rosephin and tried to send us home.

> I raised a big deal since he wasn't eatign and drinking and they

> were going to send us home and todl us to give him an antiboic and

> switch Ibu and tylenol every 4 hours. They called my reg doc and the

> doc requested they send us to Cook's children hospital in Fort Worth,

> TX. An ambulance took us there. After the doc looked him over he said

> he only had a virus and sent us home after givign him a full dose of

> Iv's and more intraveinous antibotics. The fever evetualy subsided

> and he was back to normal. In July he got fever again this tiem

> highest was 106.9. He had diarehha this time. First tiem he had it

> there were no other symptoms. They checked him for a lot of different

> things. He had a cat scan and upper and lower GI. They thought he

> had C-dif and sent off culture and it was neg. They thought he had

> crohns and that was teh reason for the GI's. He was in hospital 5

> days. He was really dehydrated with this one too and had a hard time

> with Iv's and takign blood. IN Aug he got in again and thsi tiem it

> was highest 106.8. No other symptoms. I called doc and he called

> infectious disese doctor at Cook's CHildrens. We went to ER and saw

> an ER doc since Infectiuos doc was not able to make it in that night.

> They gave him ibuprofen adn took labs. The doc saw him while he was

> actibg okay since fever was down and said it probably a virus adn

> will send us home. I just lost it and asked him why would he send a

> baby hoem with high fever that is not eatign or drinking? Adn

> stressed to him again thsi was not a virus and he gets it regulrly.

> He seemed to clow us off and said he'd wait for labs. s fever

> went up again to 106. He got like a " hot puddle " just floppy and

> weak. I todl them to call that doc in to look at him. He came adn

> was as he said " quite impressed with difference " . He also said white

> blood cells were high and so were sed? test results. He said he woudl

> call the infectiuos disesae doc again. Suprise, Surprise they

> admitted us. He was in for 4 days and was very dehydrated. At one

> tiem the only place they could take blood or get an IV in was his

> head. He's always perk right up when fever was down due to meds but

> wasn't eating or drinking till 4th day hospital stay and 5th day

> illness. THey checked him from everything from HIV to Cat scratch

> fever. The doctor thinks he has and sent us hoem with a

> prescription for steroid just in case. We are suppossed to call her

> when he has next episode because she wants to see him when it first

> starts. She'd liek to administer Steroid if its during week or she's

> on call but she gave us a steroid prescription just in case we aren't

> able to see her. He is fine for now and we just dread the next three

> to four weeks. Do you all have so many problems with dehydration? Do

> your kids have to be hospitalized frequently? How well does the

> steriod work?

>

> Marie

>

> Mom to 10 mo (almost 11 mo), and Madalyn age 9 in

> ville, Texas

>

August 23, 2004