Re: Shane's results and new symptoms

September 16, 2004

Hi,

My name is and my son gets periodic fevers too. Just wondering what

Shane's rashes look like. My son gets rashes also, usually on his back and

they are about 1 inch and red a little raised. We have not gotten a diagnosis

either. We have seen specialist in the Kaiser system and at Stanford. My son

gets very bad breath during a high fever.

After getting all negative results through Stanford I also felt like we are

back to square one. But square one is a lot better than some of the diseases

they tested for I just don't want them to over look anything.

Good Luck on a diagnosis,

Have a great day,

September 16, 2004

Hi,

My name is and my son gets periodic fevers too. Just wondering what

Shane's rashes look like. My son gets rashes also, usually on his back and

they are about 1 inch and red a little raised. We have not gotten a diagnosis

either. We have seen specialist in the Kaiser system and at Stanford. My son

gets very bad breath during a high fever.

After getting all negative results through Stanford I also felt like we are

back to square one. But square one is a lot better than some of the diseases

they tested for I just don't want them to over look anything.

Good Luck on a diagnosis,

Have a great day,

September 16, 2004

My daughter (5) smells terrible with her fevers too. I don't know, but

I always notice it.

She doesn't have a diagnosis either, we are still trying to figure it

out.

She also tested negative for all the genetic disorders. She missed her

first fever after her tonsillectomy last month so we are hoping that

continues. She does still get the leg pain and our doctor is now doing

a rheumatology work up for that.

So we will wait and see as usual.

Tracey

mom to Maddie, 5

and Brent, 9

League City, Tx

On Thursday, September 16, 2004, at 12:07 PM, bdettis wrote:

> Hi Everyone,

>

> Just wanted to let you know that a few months ago we had Shane

> tested for HIDS, TRAPS, FMF, and cyclic neutropenia. All of the

> results came back negative. I feel like we're back to square one.

> Presently, I'm looking into getting to see another doctor at Oakland

> Children's Hospital. I'm even thinking about going across country

> to Boston to see docs there. I'm so frustrated!!!

>

> Shane now has several new symptoms. After the end of his fever he

> now gets a rash. It's sporadic. Sometimes he has it for a few

> hours, a few days, sometimes weeks. I give him Zyrtec or Benedryl

> and it gets rid of the rash for that time. They want to biopsy it.

> Haven't been able to do that yet.

>

> The last episode I noticed something new. Shane has a certain smell

> when he has his fever. Has anyone else experienced this? It's not

> a pleasant smell and it pungent and it can last for a while. He has

> it even after he is no longer sick with the fever. Please let me

> know if anyone else has experienced this.

>

> Once again, I need to say, everyone on this site is awesome and you

> are my pillar of strength!! I feel like I'm not alone with this

> terrible illness. Thanks for you help and advise.

>

> Beverly Dettis

> Mother to Shane (7 yrs)

> Nick (9 yrs) and

> Madalyn (4 yrs)

>

<image.tiff>

>

<image.tiff>

>

September 16, 2004

My daughter (5) smells terrible with her fevers too. I don't know, but

I always notice it.

She doesn't have a diagnosis either, we are still trying to figure it

out.

She also tested negative for all the genetic disorders. She missed her

first fever after her tonsillectomy last month so we are hoping that

continues. She does still get the leg pain and our doctor is now doing

a rheumatology work up for that.

So we will wait and see as usual.

Tracey

mom to Maddie, 5

and Brent, 9

League City, Tx

On Thursday, September 16, 2004, at 12:07 PM, bdettis wrote:

> Hi Everyone,

>

> Just wanted to let you know that a few months ago we had Shane

> tested for HIDS, TRAPS, FMF, and cyclic neutropenia. All of the

> results came back negative. I feel like we're back to square one.

> Presently, I'm looking into getting to see another doctor at Oakland

> Children's Hospital. I'm even thinking about going across country

> to Boston to see docs there. I'm so frustrated!!!

>

> Shane now has several new symptoms. After the end of his fever he

> now gets a rash. It's sporadic. Sometimes he has it for a few

> hours, a few days, sometimes weeks. I give him Zyrtec or Benedryl

> and it gets rid of the rash for that time. They want to biopsy it.

> Haven't been able to do that yet.

>

> The last episode I noticed something new. Shane has a certain smell

> when he has his fever. Has anyone else experienced this? It's not

> a pleasant smell and it pungent and it can last for a while. He has

> it even after he is no longer sick with the fever. Please let me

> know if anyone else has experienced this.

>

> Once again, I need to say, everyone on this site is awesome and you

> are my pillar of strength!! I feel like I'm not alone with this

> terrible illness. Thanks for you help and advise.

>

> Beverly Dettis

> Mother to Shane (7 yrs)

> Nick (9 yrs) and

> Madalyn (4 yrs)

>

<image.tiff>

>

<image.tiff>

>

September 16, 2004

Caden also gets a very distinct smell during fever episodes. For a long time, I

just thought it was the smell of the tylenol/motrin on him. I wouldn't say he

smells bad, but it is very distinct. Interesting.............................

--

L. s

shelleyluan@...

(214) 223-7008

-------------- Original message --------------

> My daughter (5) smells terrible with her fevers too. I don't know, but

> I always notice it.

> She doesn't have a diagnosis either, we are still trying to figure it

> out.

> She also tested negative for all the genetic disorders. She missed her

> first fever after her tonsillectomy last month so we are hoping that

> continues. She does still get the leg pain and our doctor is now doing

> a rheumatology work up for that.

> So we will wait and see as usual.

>

> Tracey

> mom to Maddie, 5

> and Brent, 9

> League City, Tx

>

> On Thursday, September 16, 2004, at 12:07 PM, bdettis wrote:

>

> > Hi Everyone,

> >

> > Just wanted to let you know that a few months ago we had Shane

> > tested for HIDS, TRAPS, FMF, and cyclic neutropenia. All of the

> > results came back negative. I feel like we're back to square one.

> > Presently, I'm looking into getting to see another doctor at Oakland

> > Children's Hospital. I'm even thinking about going across country

> > to Boston to see docs there. I'm so frustrated!!!

> >

> > Shane now has several new symptoms. After the end of his fever he

> > now gets a rash. It's sporadic. Sometimes he has it for a few

> > hours, a few days, sometimes weeks. I give him Zyrtec or Benedryl

> > and it gets rid of the rash for that time. They want to biopsy it.

> > Haven't been able to do that yet.

> >

> > The last episode I noticed something new. Shane has a certain smell

> > when he has his fever. Has anyone else experienced this? It's not

> > a pleasant smell and it pungent and it can last for a while. He has

> > it even after he is no longer sick with the fever. Please let me

> > know if anyone else has experienced this.

> >

> > Once again, I need to say, everyone on this site is awesome and you

> > are my pillar of strength!! I feel like I'm not alone with this

> > terrible illness. Thanks for you help and advise.

> >

> > Beverly Dettis

> > Mother to Shane (7 yrs)

> > Nick (9 yrs) and

> > Madalyn (4 yrs)

> >

>

> >

>

> >

September 16, 2004

Caden also gets a very distinct smell during fever episodes. For a long time, I

just thought it was the smell of the tylenol/motrin on him. I wouldn't say he

smells bad, but it is very distinct. Interesting.............................

--

L. s

shelleyluan@...

(214) 223-7008

-------------- Original message --------------

> My daughter (5) smells terrible with her fevers too. I don't know, but

> I always notice it.

> She doesn't have a diagnosis either, we are still trying to figure it

> out.

> She also tested negative for all the genetic disorders. She missed her

> first fever after her tonsillectomy last month so we are hoping that

> continues. She does still get the leg pain and our doctor is now doing

> a rheumatology work up for that.

> So we will wait and see as usual.

>

> Tracey

> mom to Maddie, 5

> and Brent, 9

> League City, Tx

>

> On Thursday, September 16, 2004, at 12:07 PM, bdettis wrote:

>

> > Hi Everyone,

> >

> > Just wanted to let you know that a few months ago we had Shane

> > tested for HIDS, TRAPS, FMF, and cyclic neutropenia. All of the

> > results came back negative. I feel like we're back to square one.

> > Presently, I'm looking into getting to see another doctor at Oakland

> > Children's Hospital. I'm even thinking about going across country

> > to Boston to see docs there. I'm so frustrated!!!

> >

> > Shane now has several new symptoms. After the end of his fever he

> > now gets a rash. It's sporadic. Sometimes he has it for a few

> > hours, a few days, sometimes weeks. I give him Zyrtec or Benedryl

> > and it gets rid of the rash for that time. They want to biopsy it.

> > Haven't been able to do that yet.

> >

> > The last episode I noticed something new. Shane has a certain smell

> > when he has his fever. Has anyone else experienced this? It's not

> > a pleasant smell and it pungent and it can last for a while. He has

> > it even after he is no longer sick with the fever. Please let me

> > know if anyone else has experienced this.

> >

> > Once again, I need to say, everyone on this site is awesome and you

> > are my pillar of strength!! I feel like I'm not alone with this

> > terrible illness. Thanks for you help and advise.

> >

> > Beverly Dettis

> > Mother to Shane (7 yrs)

> > Nick (9 yrs) and

> > Madalyn (4 yrs)

> >

>

> >

>

> >

September 16, 2004

--Hi ,

Have you had your son looked at for Bechets? sp? I runs in families

usually but it does have a rash involved. I have had Hayden checked

for it because of my background. It will also involve leg or joint

pain, and mouth ulcers, sometimes on genital too.

Who did you see at Stanford?? I am going there also and was curious

as to who you have seen.

mom to Hayden,- In , GabenCam4447@a... wrote:

> Hi,

> My name is and my son gets periodic fevers too. Just

wondering what

> Shane's rashes look like. My son gets rashes also, usually on his

back and

> they are about 1 inch and red a little raised. We have not gotten

a diagnosis

> either. We have seen specialist in the Kaiser system and at

Stanford. My son

> gets very bad breath during a high fever.

> After getting all negative results through Stanford I also felt

like we are

> back to square one. But square one is a lot better than some of

the diseases

> they tested for I just don't want them to over look anything.

>

> Good Luck on a diagnosis,

> Have a great day,

>

September 16, 2004

--Hi ,

Have you had your son looked at for Bechets? sp? I runs in families

usually but it does have a rash involved. I have had Hayden checked

for it because of my background. It will also involve leg or joint

pain, and mouth ulcers, sometimes on genital too.

Who did you see at Stanford?? I am going there also and was curious

as to who you have seen.

mom to Hayden,- In , GabenCam4447@a... wrote:

> Hi,

> My name is and my son gets periodic fevers too. Just

wondering what

> Shane's rashes look like. My son gets rashes also, usually on his

back and

> they are about 1 inch and red a little raised. We have not gotten

a diagnosis

> either. We have seen specialist in the Kaiser system and at

Stanford. My son

> gets very bad breath during a high fever.

> After getting all negative results through Stanford I also felt

like we are

> back to square one. But square one is a lot better than some of

the diseases

> they tested for I just don't want them to over look anything.

>

> Good Luck on a diagnosis,

> Have a great day,

>

September 17, 2004

Hi ,

Shane's rash varies in size, from small blurred together, to large

red raised bumps. Sounds alot like what your son gets. I like

your optimisim. You're right, some of the genetic orders could have

been worse than . But, like yourself, I don't want anything to

go unchecked. I would also be interested in who you see at

Stanford. Does this doctor also have other patients other than your

child who has ?

The other thing I wanted to mention was that Shane sweats alot.

Usually at night and that is when that unusual smell is generated,

not just when he has his fever. I can really smell it when I kiss

him on the top of his head during the day. Funny, I never really

noticed him ever having this smell until recently. I wonder if this

coincides with his rash?

Hopefully we will get some answers some day.

Thanks for your info.

Beverly Dettis

> Hi,

> My name is and my son gets periodic fevers too. Just

wondering what

> Shane's rashes look like. My son gets rashes also, usually on his

back and

> they are about 1 inch and red a little raised. We have not gotten

a diagnosis

> either. We have seen specialist in the Kaiser system and at

Stanford. My son

> gets very bad breath during a high fever.

> After getting all negative results through Stanford I also felt

like we are

> back to square one. But square one is a lot better than some of

the diseases

> they tested for I just don't want them to over look anything.

>

> Good Luck on a diagnosis,

> Have a great day,

>

September 17, 2004

Hi ,

Shane's rash varies in size, from small blurred together, to large

red raised bumps. Sounds alot like what your son gets. I like

your optimisim. You're right, some of the genetic orders could have

been worse than . But, like yourself, I don't want anything to

go unchecked. I would also be interested in who you see at

Stanford. Does this doctor also have other patients other than your

child who has ?

The other thing I wanted to mention was that Shane sweats alot.

Usually at night and that is when that unusual smell is generated,

not just when he has his fever. I can really smell it when I kiss

him on the top of his head during the day. Funny, I never really

noticed him ever having this smell until recently. I wonder if this

coincides with his rash?

Hopefully we will get some answers some day.

Thanks for your info.

Beverly Dettis

> Hi,

> My name is and my son gets periodic fevers too. Just

wondering what

> Shane's rashes look like. My son gets rashes also, usually on his

back and

> they are about 1 inch and red a little raised. We have not gotten

a diagnosis

> either. We have seen specialist in the Kaiser system and at

Stanford. My son

> gets very bad breath during a high fever.

> After getting all negative results through Stanford I also felt

like we are

> back to square one. But square one is a lot better than some of

the diseases

> they tested for I just don't want them to over look anything.

>

> Good Luck on a diagnosis,

> Have a great day,

>

September 17, 2004

Hi,

Breana has a bad smell both body and breath when fevering. I saw how you felt

like you might want to come to Boston...My daughter receives her care at Boston

Children's and even they had to send us to NIH! So before I considered coming

here I would contact NIH. I am sure it must be very frustrating, believe me

while I didn't want Breana to 'have' any of the genetic disorders that have been

'named' I also really would like to give this a name, But I guess as of now we

do have a name ,''. Breana gets rash at any time, why are they thinking

biopsy????? For what purpose? What do they think it will tell them?

Breana has many signs of the named genetic disorders but so far neg on all(we

still have a pending Muckle Wells Syndrome test)

I would contact NIh before coming to BCH...I hate to say it but Infectious

Disease sent me right to rheumatology almost 3 years ago and Breana has had the

head of the dept shaking his head ever since! That's why they sent us right to

Dr. Kastner...I know that her doc's here also have spoken often about BReana

when certain things have come up.

Hang in there

mom to BReana (3.6)

14yrs

Shane's results and new symptoms

Hi Everyone,

Just wanted to let you know that a few months ago we had Shane

tested for HIDS, TRAPS, FMF, and cyclic neutropenia. All of the

results came back negative. I feel like we're back to square one.

Presently, I'm looking into getting to see another doctor at Oakland

Children's Hospital. I'm even thinking about going across country

to Boston to see docs there. I'm so frustrated!!!

Shane now has several new symptoms. After the end of his fever he

now gets a rash. It's sporadic. Sometimes he has it for a few

hours, a few days, sometimes weeks. I give him Zyrtec or Benedryl

and it gets rid of the rash for that time. They want to biopsy it.

Haven't been able to do that yet.

The last episode I noticed something new. Shane has a certain smell

when he has his fever. Has anyone else experienced this? It's not

a pleasant smell and it pungent and it can last for a while. He has

it even after he is no longer sick with the fever. Please let me

know if anyone else has experienced this.

Once again, I need to say, everyone on this site is awesome and you

are my pillar of strength!! I feel like I'm not alone with this

terrible illness. Thanks for you help and advise.

Beverly Dettis

Mother to Shane (7 yrs)

Nick (9 yrs) and

Madalyn (4 yrs)

September 17, 2004