Siblings

[Guest guest]

Hi Charlyne,

What news on your get away with Zeb to Gails. Glad to hear all went

well. Hugs, hugs, hugs. Love it!

Well, I certainly could relate to our older kids. My 25 y/o's hours

have been cut. He is working at a so called French Restraurant. I

say " so called " as its run by Americans, with American ingredients.

Anyways its due to the " French boycott " . Well, just as I thought I

was going to have my hours cut, I end up doing extra. Just can't get

away.

My 25 y/o thinks its vacation time and is now involved with a

girlfriend and loves to spend his devoted free time with her. Yep,

he will not pick up after himself or help around. Somethimes he does

but its almost like pulling teeth. I know we did nothing wrong

raising our older kiddos. Ok, maybe in my case spoiling him too much

as he is my first. Then its the latin culture that I grew up with.

Women pick up after them. Oh boy must be in his blood. I can just

imagine this weekend when I return home from my weekend trip as he

is staying behind.

My 16 y/o, well. Why should he clean up if big bro does not. He does

help with when needed. Most part of him getting away from not

doing things, he is always busy with school work. Too much I should

say.

well, he is another story. He loves to help out and that is

only IF & WHEN he is in a good mood. But, then he is just learning

the basic skills. One of the patients at the clinic I work with

mentioned that if I know anybody that needs some housecleaning to

let her know. I've always been against it as I like things my way

and afraid of things missing or the private thing. I might just have

to cave in and make her day. Funny how I think that way as I grew up

with maids.

I know this does not involve to the issue were discussing but on a

another note. I'm thankful that 's brothers have adjusted and

can cope with their little bro. I know they are caught between two

worlds: the outside world and the world at home. Older children may

be afraid to tell their parents what they're feeling for fear of

hurting us on adding to our burden. Younger children may be unable

or unwilling to express emotions.

Well, I guess its never too late involving 's siblings with

specific tasks to do, to help their special need brother which could

probably help defuse resentment over his extra attention if any.

I'll try to keep their job short so they don't resent the time they

have to help him. Maybe the trick is to enable his siblings to feel

involved and useful without feeling so responsible that they become

mini-parents. Then there is the other route becoming a drill

sergeant. Eh, one day at a time.

Irma,14,DS/ASD

[Guest guest]

Hi,

I would love for Donna's daughter Ellie to share her verse on this.

I write this because it makes it easier for a younger person to

understand. On one occasion which was so cute that a teacher who

shared with a young girl with HF autism. It was about another little

girl and the teacher had just asked her " how would I tell the

parents about their childs disability? " Teacher was shocked because

she gave the most beautiful answer.

" Tell them that they love her. " Was one of the answer, I can't

remember the rest at this time. Donna had also shared a book

titled " Red October " . Something like that, this is a cute story.

Continue reading the stories and when things happen at the time try

to explain the reason behind it. Example like if Luca wanted a

particular toy/item and Sofia is using it and Luca has a fit. This

would be the time to say something like Sofia lets teach Luca taking

turns. Luca will understand this, too. Even if Sofia wants to tell

Luca something and his mind is occupied he is listening so he'll

come around. Let her know its ok and try next time. I remember when

I would sit on my lap and have Rick sit next to me I would

have Rick pretend he was reading aloud because it was his verse of

the pictures on the easy books and I would make sound effects so

that would not get bored. He loved those moments with his

brother then I would fade away slowly spying around the corner.

It'll require supervison so that Luca will understand that his

sister will always be there for him and she will learn how to do

things together. I'll stop here as my memory is short lived at this

age but I do have the teen verse on what has helped 's

brother. What a cute age and Sofia will come around being his

educator and he'll put her on a pedestal even if she is younger than

him. Looking forward hearing what has helped others.

Irma,14,DS/ASD

[Guest guest]

Sorry Donna, I meant Allie. %)

Irma

[Guest guest]

Hi Becky,

I have a 3yr old son and 2 yr old daughter. Both of my kids " supposedly "

have . My sons fevers have really started to spread out....they are

now about every 5 months. My daughters are 17 days apart. Both kids

started around the same age...right after their MMR shots. Probably just a

coincidence...but you never know. We have an appt Aug. 2nd at NIH for both

kids. I'll be anxious to see what happens.

I treat both kids with Orapred. They are fever free w/in a couple of hours

but it makes my daughters fevers come more frequently.

siblings

>

>

> Just wondering how many of you have experienced siblings both having

symptoms. Sam(now 4 years old) was diagnosed last year and he started

having fevers around 18 months old. I kept a diary of when we he had

fevers, mouth ulcers etc and it was always 4-6 weeks apart. We are now

keeping him controlled with Orapred..we went to Infectious Disease

specialist at LeBonheur in Memphis where they suggested this treatment. He

has done pretty well with this, even had a 5 month well period which was

highly unusual. After 5 months he is back on the usual 4-6 week cycle. Now

my 18 month old son, Bowen, has had fevers the past two months and I notices

a mouth ulcer this past weekend. I am taking him to the dr today. Both of

my children are otherwise very healthy and normal, never with ear infections

or other normal childhood problems. I am just hoping they are both not

going to end up with this. Just wondering who else might be going through

this. Thanks!!

>

> Becky Mansell

>

> Bowen 18 months old

>

> Sam 4 years old

>

> __________________________________________________

>

[Guest guest]

Thanks for your response. I am just going to keep a log of every time Bowen has

a fever and hope that we do not have to go through this again. I too notice a

decrease of time between the episodes after Orapred, other than our 5 month

hiatus. I am hoping now that Sam is older it will spread out more over time.

If we do see that are cyclic with my youngest I guess we will try to take both

of them back to the ID specialist. This is just such an odd and interesting

syndrome. I am amazed and am thankful for all the people who write in!!

Becky

Oppliger <julie@...> wrote:

Hi Becky,

I have a 3yr old son and 2 yr old daughter. Both of my kids " supposedly "

have . My sons fevers have really started to spread out....they are

now about every 5 months. My daughters are 17 days apart. Both kids

started around the same age...right after their MMR shots. Probably just a

coincidence...but you never know. We have an appt Aug. 2nd at NIH for both

kids. I'll be anxious to see what happens.

I treat both kids with Orapred. They are fever free w/in a couple of hours

but it makes my daughters fevers come more frequently.

siblings

>

>

> Just wondering how many of you have experienced siblings both having

symptoms. Sam(now 4 years old) was diagnosed last year and he started

having fevers around 18 months old. I kept a diary of when we he had

fevers, mouth ulcers etc and it was always 4-6 weeks apart. We are now

keeping him controlled with Orapred..we went to Infectious Disease

specialist at LeBonheur in Memphis where they suggested this treatment. He

has done pretty well with this, even had a 5 month well period which was

highly unusual. After 5 months he is back on the usual 4-6 week cycle. Now

my 18 month old son, Bowen, has had fevers the past two months and I notices

a mouth ulcer this past weekend. I am taking him to the dr today. Both of

my children are otherwise very healthy and normal, never with ear infections

or other normal childhood problems. I am just hoping they are both not

going to end up with this. Just wondering who else might be going through

this. Thanks!!

>

> Becky Mansell

>

> Bowen 18 months old

>

> Sam 4 years old

>

> __________________________________________________

>

[Guest guest]

Becky,

A note regarding siblings.

So far I have run this group for about 5 years and since the start, any

family who had more than one child with periodic fevers, and HAD genetic

studies done, ended up with HIDs, TRAPS or FMF.

We have one family who remains in our group for the support. I have had 3

other families who had 2-3 children with fevers and I encouraged all to seek

genetic studies through NIH. All did and ALL have had new diagnosis given

from Kastner because of genetic mutations.

There are a couple of newer members who have told us that they have siblings

with however again I ENCOURAGE them to see Dr Kastner at the NIH in

Bethesda Md and join his research. I ALSO encourage ALL members to seek

genetic studies as these fever disorders have VERY similar symptoms.

is a disease of EXCLUSION. And then many children and some adults are

lumped into this category because of a lack of genetic or other diagnostic

tool....

We have also seen children who were diagnosed rapidly with and who

later the parents decided to get genetic studies and their diagnosis was

changed to the genetic disorders....

Steroids to work for TRAPS and may work with HIDs.... so the theory of using

Prednisone and if it works it is has more recently been disregarded.

God Bless,

Fran

Fran A Bulone

Mom to ph 5 yrs old

Waxhaw, NC

Owner & Moderator Group

[Guest guest]

A further note regarding siblings...

has tested negative for the genetic disorders. At our last

visit, Dr. Kastner ordered the tests for too - although we all

expect they will be negative too.

My boys do not fit . Their symptoms are much more similar to

TRAPS (which tested negative for). I strongly feel that Dr.

Kastner's team will soon find a new cause that will give many of us

the answers as to what is happening with our child/children.

Dr. Kastner's team is the best. We feel very lucky to me in the

program and I also encourage all to contact the study. it requires

patience though. We all have a need to have a definition for what is

going on with our kids. Although is a diagnosis of exclusion,

I do not feel comfortable saying that is what they have - my husband

and I like to say that they have a periodic fever syndrome rather

than . It helps people understand what they go through with out

labeling them with a specific cause.

We have had the pleasure of visiting NIH twice so far, our next visit

will be in September. We understand it may be many years before we

know what is causing the fevers, but we feel that Dr. Kastner's team

gives us the best care we could ever hope for.

> Becky,

>

> A note regarding siblings.

> So far I have run this group for about 5 years and since the start,

any

> family who had more than one child with periodic fevers, and HAD

genetic

> studies done, ended up with HIDs, TRAPS or FMF.

>

> We have one family who remains in our group for the support. I have

had 3

> other families who had 2-3 children with fevers and I encouraged

all to seek

> genetic studies through NIH. All did and ALL have had new diagnosis

given

> from Kastner because of genetic mutations.

>

> There are a couple of newer members who have told us that they have

siblings

> with however again I ENCOURAGE them to see Dr Kastner at the

NIH in

> Bethesda Md and join his research. I ALSO encourage ALL members to

seek

> genetic studies as these fever disorders have VERY similar symptoms.

>

> is a disease of EXCLUSION. And then many children and some

adults are

> lumped into this category because of a lack of genetic or other

diagnostic

> tool....

>

> We have also seen children who were diagnosed rapidly with

and who

> later the parents decided to get genetic studies and their

diagnosis was

> changed to the genetic disorders....

>

> Steroids to work for TRAPS and may work with HIDs.... so the theory

of using

> Prednisone and if it works it is has more recently been

disregarded.

>

> God Bless,

> Fran

> Fran A Bulone

> Mom to ph 5 yrs old

> Waxhaw, NC

>

> Owner & Moderator Group

>

>

>

>

[Guest guest]

,

I agree with you!!

My son has also had the genetic studies... and they are negative. Kastner

also feels his periodic fever disorder fits closely in the TRAPs

category....

Since new mutations are being found and have been isolated in the past

couple of years I am sure that they will continue to find newer mutations...

and eventually our kids will connect with the newer mutations!!

I love going to NIH and feel someday many of us will have more answers.

I too now use the term Periodic Fever Syndrome for ph. He also has shown

a high IGD recently (past January visit at NIH)... this is a new find. His

IGD was always normal! So he is confusing.

Kastner has labeled kids as Clinical Traps, Clinical FMF etc.... although

these children may not have a genetic marker AT THIS POINT, their symptoms

are closer to these disorders and with FMF they respond to the specific

medication used for FMF!

It is very interesting!

God Bless

Fran

Fran A Bulone

Mom to ph 5 yrs old

Waxhaw, NC

Owner & Moderator Group

[Guest guest]

Hi Kirsten,

Just found this message that answered my last question to you. I'm

just wondering if you can tell me why are you going back to NIH? They

also said to us we can come back any time, but I feel could only offer

them a bit more of the same. The girls' fevers have changed in

symptoms a bit and their response to prednisone seems to vary also,

but is that what NIH is interested in? Since we have decided not to

put the girls on Enbrel (too many possible side effects) I'm not sure

what else they can do for us.

Just curious what happens in repeat visits.

Thanks

linda

> > Becky,

> >

> > A note regarding siblings.

> > So far I have run this group for about 5 years and since the start,

> any

> > family who had more than one child with periodic fevers, and HAD

> genetic

> > studies done, ended up with HIDs, TRAPS or FMF.

> >

> > We have one family who remains in our group for the support. I have

> had 3

> > other families who had 2-3 children with fevers and I encouraged

> all to seek

> > genetic studies through NIH. All did and ALL have had new diagnosis

> given

> > from Kastner because of genetic mutations.

> >

> > There are a couple of newer members who have told us that they have

> siblings

> > with however again I ENCOURAGE them to see Dr Kastner at the

> NIH in

> > Bethesda Md and join his research. I ALSO encourage ALL members to

> seek

> > genetic studies as these fever disorders have VERY similar symptoms.

> >

> > is a disease of EXCLUSION. And then many children and some

> adults are

> > lumped into this category because of a lack of genetic or other

> diagnostic

> > tool....

> >

> > We have also seen children who were diagnosed rapidly with

> and who

> > later the parents decided to get genetic studies and their

> diagnosis was

> > changed to the genetic disorders....

> >

> > Steroids to work for TRAPS and may work with HIDs.... so the theory

> of using

> > Prednisone and if it works it is has more recently been

> disregarded.

> >

> > God Bless,

> > Fran

> > Fran A Bulone

> > Mom to ph 5 yrs old

> > Waxhaw, NC

> >

> > Owner & Moderator Group

> >

> >

> >

> >

[Guest guest]

Hi Kirsten,

Just found this message that answered my last question to you. I'm

just wondering if you can tell me why are you going back to NIH? They

also said to us we can come back any time, but I feel could only offer

them a bit more of the same. The girls' fevers have changed in

symptoms a bit and their response to prednisone seems to vary also,

but is that what NIH is interested in? Since we have decided not to

put the girls on Enbrel (too many possible side effects) I'm not sure

what else they can do for us.

Just curious what happens in repeat visits.

Thanks

linda

> > Becky,

> >

> > A note regarding siblings.

> > So far I have run this group for about 5 years and since the start,

> any

> > family who had more than one child with periodic fevers, and HAD

> genetic

> > studies done, ended up with HIDs, TRAPS or FMF.

> >

> > We have one family who remains in our group for the support. I have

> had 3

> > other families who had 2-3 children with fevers and I encouraged

> all to seek

> > genetic studies through NIH. All did and ALL have had new diagnosis

> given

> > from Kastner because of genetic mutations.

> >

> > There are a couple of newer members who have told us that they have

> siblings

> > with however again I ENCOURAGE them to see Dr Kastner at the

> NIH in

> > Bethesda Md and join his research. I ALSO encourage ALL members to

> seek

> > genetic studies as these fever disorders have VERY similar symptoms.

> >

> > is a disease of EXCLUSION. And then many children and some

> adults are

> > lumped into this category because of a lack of genetic or other

> diagnostic

> > tool....

> >

> > We have also seen children who were diagnosed rapidly with

> and who

> > later the parents decided to get genetic studies and their

> diagnosis was

> > changed to the genetic disorders....

> >

> > Steroids to work for TRAPS and may work with HIDs.... so the theory

> of using

> > Prednisone and if it works it is has more recently been

> disregarded.

> >

> > God Bless,

> > Fran

> > Fran A Bulone

> > Mom to ph 5 yrs old

> > Waxhaw, NC

> >

> > Owner & Moderator Group

> >

> >

> >

> >

[Guest guest]

i'm new to this group- can someone please fill me in on all of this NIH/ dr

kastner stuff? is he the guru in the field? are they running studies? i'm

totally in the dark. thanks.

Re: siblings

Hi Kirsten,

Just found this message that answered my last question to you. I'm

just wondering if you can tell me why are you going back to NIH? They

also said to us we can come back any time, but I feel could only offer

them a bit more of the same. The girls' fevers have changed in

symptoms a bit and their response to prednisone seems to vary also,

but is that what NIH is interested in? Since we have decided not to

put the girls on Enbrel (too many possible side effects) I'm not sure

what else they can do for us.

Just curious what happens in repeat visits.

Thanks

linda

> > Becky,

> >

> > A note regarding siblings.

> > So far I have run this group for about 5 years and since the start,

> any

> > family who had more than one child with periodic fevers, and HAD

> genetic

> > studies done, ended up with HIDs, TRAPS or FMF.

> >

> > We have one family who remains in our group for the support. I have

> had 3

> > other families who had 2-3 children with fevers and I encouraged

> all to seek

> > genetic studies through NIH. All did and ALL have had new diagnosis

> given

> > from Kastner because of genetic mutations.

> >

> > There are a couple of newer members who have told us that they have

> siblings

> > with however again I ENCOURAGE them to see Dr Kastner at the

> NIH in

> > Bethesda Md and join his research. I ALSO encourage ALL members to

> seek

> > genetic studies as these fever disorders have VERY similar symptoms.

> >

> > is a disease of EXCLUSION. And then many children and some

> adults are

> > lumped into this category because of a lack of genetic or other

> diagnostic

> > tool....

> >

> > We have also seen children who were diagnosed rapidly with

> and who

> > later the parents decided to get genetic studies and their

> diagnosis was

> > changed to the genetic disorders....

> >

> > Steroids to work for TRAPS and may work with HIDs.... so the theory

> of using

> > Prednisone and if it works it is has more recently been

> disregarded.

> >

> > God Bless,

> > Fran

> > Fran A Bulone

> > Mom to ph 5 yrs old

> > Waxhaw, NC

> >

> > Owner & Moderator Group

> >

> >

> >

> >

[Guest guest]

i'm new to this group- can someone please fill me in on all of this NIH/ dr

kastner stuff? is he the guru in the field? are they running studies? i'm

totally in the dark. thanks.

Re: siblings

Hi Kirsten,

Just found this message that answered my last question to you. I'm

just wondering if you can tell me why are you going back to NIH? They

also said to us we can come back any time, but I feel could only offer

them a bit more of the same. The girls' fevers have changed in

symptoms a bit and their response to prednisone seems to vary also,

but is that what NIH is interested in? Since we have decided not to

put the girls on Enbrel (too many possible side effects) I'm not sure

what else they can do for us.

Just curious what happens in repeat visits.

Thanks

linda

> > Becky,

> >

> > A note regarding siblings.

> > So far I have run this group for about 5 years and since the start,

> any

> > family who had more than one child with periodic fevers, and HAD

> genetic

> > studies done, ended up with HIDs, TRAPS or FMF.

> >

> > We have one family who remains in our group for the support. I have

> had 3

> > other families who had 2-3 children with fevers and I encouraged

> all to seek

> > genetic studies through NIH. All did and ALL have had new diagnosis

> given

> > from Kastner because of genetic mutations.

> >

> > There are a couple of newer members who have told us that they have

> siblings

> > with however again I ENCOURAGE them to see Dr Kastner at the

> NIH in

> > Bethesda Md and join his research. I ALSO encourage ALL members to

> seek

> > genetic studies as these fever disorders have VERY similar symptoms.

> >

> > is a disease of EXCLUSION. And then many children and some

> adults are

> > lumped into this category because of a lack of genetic or other

> diagnostic

> > tool....

> >

> > We have also seen children who were diagnosed rapidly with

> and who

> > later the parents decided to get genetic studies and their

> diagnosis was

> > changed to the genetic disorders....

> >

> > Steroids to work for TRAPS and may work with HIDs.... so the theory

> of using

> > Prednisone and if it works it is has more recently been

> disregarded.

> >

> > God Bless,

> > Fran

> > Fran A Bulone

> > Mom to ph 5 yrs old

> > Waxhaw, NC

> >

> > Owner & Moderator Group

> >

> >

> >

> >

[Guest guest]

That is so weird... 's IGD was normal previously but was high

on his December and his May visits to NIH... I'm glad we are all in

the study. The more they see similar cases - the closer they are to

finding the answer!

> ,

> I agree with you!!

> My son has also had the genetic studies... and they are negative.

Kastner

> also feels his periodic fever disorder fits closely in the TRAPs

> category....

>

> Since new mutations are being found and have been isolated in the

past

> couple of years I am sure that they will continue to find newer

mutations...

> and eventually our kids will connect with the newer mutations!!

>

> I love going to NIH and feel someday many of us will have more

answers.

>

> I too now use the term Periodic Fever Syndrome for ph. He also

has shown

> a high IGD recently (past January visit at NIH)... this is a new

find. His

> IGD was always normal! So he is confusing.

>

> Kastner has labeled kids as Clinical Traps, Clinical FMF etc....

although

> these children may not have a genetic marker AT THIS POINT, their

symptoms

> are closer to these disorders and with FMF they respond to the

specific

> medication used for FMF!

>

> It is very interesting!

> God Bless

> Fran

> Fran A Bulone

> Mom to ph 5 yrs old

> Waxhaw, NC

>

> Owner & Moderator Group

>

>

>

>

>

[Guest guest]

Return visits are pretty similar to the first visit. We live fairly

close (4 hours) from the hospital and have good friends and family in

Bethesda. So i have told them that we do not mind going as often as

we need to - maybe that is why they keep asking us back?

We had 's inital visit in December. Since he is showing

symptoms that are far from but has tested negative for the

others Dr. Kastner was very interested. At that time His brother had

4-5 fevers that concerned us. it was after January that it was

agreed that would need to be entered into the study as well. We

went back in May for 's follow up and 's new patient

visit. The boys also have a lot of GI issues with fevers and they

have asked that we get a consult at Duke Childrens and then return

following that consult.

Since it is a research study it's hard to say why he's asking to see

the boys when he does. I don't complain though. If we are helping

the study in some way it's only going to help us in the future.

He seemed very suprised that the genetic tests were negative. if the

answer was clear cut, they probaby would not be asking to see them so

soon.

> > > Becky,

> > >

> > > A note regarding siblings.

> > > So far I have run this group for about 5 years and since the

start,

> > any

> > > family who had more than one child with periodic fevers, and

HAD

> > genetic

> > > studies done, ended up with HIDs, TRAPS or FMF.

> > >

> > > We have one family who remains in our group for the support. I

have

> > had 3

> > > other families who had 2-3 children with fevers and I

encouraged

> > all to seek

> > > genetic studies through NIH. All did and ALL have had new

diagnosis

> > given

> > > from Kastner because of genetic mutations.

> > >

> > > There are a couple of newer members who have told us that they

have

> > siblings

> > > with however again I ENCOURAGE them to see Dr Kastner at

the

> > NIH in

> > > Bethesda Md and join his research. I ALSO encourage ALL members

to

> > seek

> > > genetic studies as these fever disorders have VERY similar

symptoms.

> > >

> > > is a disease of EXCLUSION. And then many children and

some

> > adults are

> > > lumped into this category because of a lack of genetic or other

> > diagnostic

> > > tool....

> > >

> > > We have also seen children who were diagnosed rapidly with

> > and who

> > > later the parents decided to get genetic studies and their

> > diagnosis was

> > > changed to the genetic disorders....

> > >

> > > Steroids to work for TRAPS and may work with HIDs.... so the

theory

> > of using

> > > Prednisone and if it works it is has more recently been

> > disregarded.

> > >

> > > God Bless,

> > > Fran

> > > Fran A Bulone

> > > Mom to ph 5 yrs old

> > > Waxhaw, NC

> > >

> > > Owner & Moderator Group

> > >

> > >

> > >

> > >

[Guest guest]

Return visits are pretty similar to the first visit. We live fairly

close (4 hours) from the hospital and have good friends and family in

Bethesda. So i have told them that we do not mind going as often as

we need to - maybe that is why they keep asking us back?

We had 's inital visit in December. Since he is showing

symptoms that are far from but has tested negative for the

others Dr. Kastner was very interested. At that time His brother had

4-5 fevers that concerned us. it was after January that it was

agreed that would need to be entered into the study as well. We

went back in May for 's follow up and 's new patient

visit. The boys also have a lot of GI issues with fevers and they

have asked that we get a consult at Duke Childrens and then return

following that consult.

Since it is a research study it's hard to say why he's asking to see

the boys when he does. I don't complain though. If we are helping

the study in some way it's only going to help us in the future.

He seemed very suprised that the genetic tests were negative. if the

answer was clear cut, they probaby would not be asking to see them so

soon.

> > > Becky,

> > >

> > > A note regarding siblings.

> > > So far I have run this group for about 5 years and since the

start,

> > any

> > > family who had more than one child with periodic fevers, and

HAD

> > genetic

> > > studies done, ended up with HIDs, TRAPS or FMF.

> > >

> > > We have one family who remains in our group for the support. I

have

> > had 3

> > > other families who had 2-3 children with fevers and I

encouraged

> > all to seek

> > > genetic studies through NIH. All did and ALL have had new

diagnosis

> > given

> > > from Kastner because of genetic mutations.

> > >

> > > There are a couple of newer members who have told us that they

have

> > siblings

> > > with however again I ENCOURAGE them to see Dr Kastner at

the

> > NIH in

> > > Bethesda Md and join his research. I ALSO encourage ALL members

to

> > seek

> > > genetic studies as these fever disorders have VERY similar

symptoms.

> > >

> > > is a disease of EXCLUSION. And then many children and

some

> > adults are

> > > lumped into this category because of a lack of genetic or other

> > diagnostic

> > > tool....

> > >

> > > We have also seen children who were diagnosed rapidly with

> > and who

> > > later the parents decided to get genetic studies and their

> > diagnosis was

> > > changed to the genetic disorders....

> > >

> > > Steroids to work for TRAPS and may work with HIDs.... so the

theory

> > of using

> > > Prednisone and if it works it is has more recently been

> > disregarded.

> > >

> > > God Bless,

> > > Fran

> > > Fran A Bulone

> > > Mom to ph 5 yrs old

> > > Waxhaw, NC

> > >

> > > Owner & Moderator Group

> > >

> > >

> > >

> > >

[Guest guest]

,

My kids were 10 years apart. being the youngest. She also was the

Baby of the family on both sides. But having a Brother 10 yrs older was

also a experience as me being the Mom to both lololol. My Son first was scared

of . My son never complained about it much just he would say why do I

have to go with her and you. Why can't I stay home. Well I never left him

alone until he was 16 yrs old. So was 6 by then. When was

Diagnosed at 12 he was 22 yrs old. He didn't know what to do when she got bad.

He

would walk outside cause he couldn't stand to hear her scream. He felt

helpless. always looked up to him and his hands were tied. He would help

me

carry her to the car.I am not sure if he felt her pain. I do know he would

help her when she needed it. Special relationship.

When they were younger they would be at each other. always won

unless he put her outside and locked the door. lolol They really played When

she would hurt he would try and help. Today they both are cool kids. Ummmm

Both a practical jokers and trying to out beat the other.

Younger kids do feel more left out though. So they want attention and

this is how they get it. You could say she had C H K and she might think it's

something big. But we would know it meant. Cuddle, Hugs, Kisses. I think this

age they mimic. You might say she has the Dancing Fever and she may ask how

did she get it.

My Hubby and me did the Girls day out and Boys day out. Maybe You should

make it one weekend be Elyssa's day out and then the next weekend Elaney's

day out. This might work and then do things with both. What is she good at? See

if you could brighten that up.

Robbin

[Guest guest]

,

My kids have not had a problem with this but then all three of the younger

ones have their own struggles. and Kristie Jo both had pneumonia and

croup many many times when they were little. was hospitalized four times

before he was two. Kristie Jo was hospitalized five or six times with

pneumonia but she was older, she remembers most of her times. Fortunatly she

outgrew

that problem and other then her asthma, allergies and her occasional

migrains she is very healthy. I think mine knew being sick was not fun and so

they

rejoice that it is not them making the trip to the doctor. Also I think if

your kids were reversed it would be different. I would think that if it were

Kristie Jo being the sick one and Jaye, my baby watching she would be

more jealous.

Veri & Jaye, 12 poly

[Guest guest]

,

Bring your son along. The classes are set for the ages. He will meet

someone there. The kids are by age groups so siblings are understood. He may be

in a class with a child with JA and also those without JA so each side sees

what the other thinks about JA.

Robbin

[Guest guest]

,

Nick is 8 ( going to be 9 in 3 weeks) he has 4 older brothers

(23,16,14,11) and a younger sister whos 7.

Taking to AJAO has been such a blessing to us. She has been

twice and has such an understanding of what her brother goes though.

In Atlanta, she came out of her class one time and said she doesnt

think she would like to trade places with her brother, she wants to

stay just the way she is. Arthritis is no fun... She then proceeded

to tell me that Nicks arthritis can go away, but that it can come

back at any time. I then got a lecture as to how your bones need

calcium and she started listing off food rich in calcium!!!! I think

the sessions the kids do with the doctors and child life specialists

are worth the trip in itself.

I am hoping to take the whole family to Hershey next year. I think

its time the older boys had as much understanding of Nicks JRA as

their 7 yr old sister does.

Perhaps on your next appt you can ask the doctor to help explain to

your 7 yr old what her older sister is going though? Then start

saving and go to HERSHEY next year!!!!!! I cannot stress strongly

enough that every memeber of the family benefits so much from the

experience on so many different levels!

hugs Helen and (8,systemic)

>

> I have a question about how all of you deal w/ the sibling of a

child

> w/ health issues. Do your " healthy " children wish they had JRA or

start

> telling other people their health problems? Elyssa (7) has just

lately

> started telling people about her eye surgery as a baby and that

she has

> TMJ. At her last dental appt the dr said she had TMJ then asked if

she

> had JRA. I said no. And now she tells EVERYONE that she has TMJ.

When

> Elaney was first dx w/ JRA, Elyssa would ask when it was her turn

to

> get JRA. I said " hopefully never " . I think the kid feels left out.

I

> can see why. Elaney gets a lot of special attention. I always try

to

> give Elyssa her own special attention and try to show her how

special I

> think she is. I just thought I would ask the group to see how you

have

> dealt w/ this situation. By the way, Elaney's Rheum appt went

well. She

> DOES NOT HAVE ARTHRITIS IN HER HIP!!!!! The dr thinks it was

muscle

> pain. He thinks she may have JRA in her chest near the sternum,

but has

> no idea why her sternum sticks out. I wish somebody knew!!! She

will be

> OFF the Prednisone in 3 weeks!!!!--- & Elyssa(7) & Elaney

(12

> poly)

>

[Guest guest]

Ditto Helen,

We are already talking about Hershey....and this year is going.

She and were both very disappointed they weren't there. I missed

them as well!

and Allie (10 poly)

________________________________

From: [mailto: ] On

Behalf Of hburger64

Sent: Friday, July 21, 2006 11:01 AM

Subject: Re: siblings

,

Nick is 8 ( going to be 9 in 3 weeks) he has 4 older brothers

(23,16,14,11) and a younger sister whos 7.

Taking to AJAO has been such a blessing to us. She has been

twice and has such an understanding of what her brother goes though.

In Atlanta, she came out of her class one time and said she doesnt

think she would like to trade places with her brother, she wants to

stay just the way she is. Arthritis is no fun... She then proceeded

to tell me that Nicks arthritis can go away, but that it can come

back at any time. I then got a lecture as to how your bones need

calcium and she started listing off food rich in calcium!!!! I think

the sessions the kids do with the doctors and child life specialists

are worth the trip in itself.

I am hoping to take the whole family to Hershey next year. I think

its time the older boys had as much understanding of Nicks JRA as

their 7 yr old sister does.

Perhaps on your next appt you can ask the doctor to help explain to

your 7 yr old what her older sister is going though? Then start

saving and go to HERSHEY next year!!!!!! I cannot stress strongly

enough that every memeber of the family benefits so much from the

experience on so many different levels!

hugs Helen and (8,systemic)

>

> I have a question about how all of you deal w/ the sibling of a

child

> w/ health issues. Do your " healthy " children wish they had JRA or

start

> telling other people their health problems? Elyssa (7) has just

lately

> started telling people about her eye surgery as a baby and that

she has

> TMJ. At her last dental appt the dr said she had TMJ then asked if

she

> had JRA. I said no. And now she tells EVERYONE that she has TMJ.

When

> Elaney was first dx w/ JRA, Elyssa would ask when it was her turn

to

> get JRA. I said " hopefully never " . I think the kid feels left out.

I

> can see why. Elaney gets a lot of special attention. I always try

to

> give Elyssa her own special attention and try to show her how

special I

> think she is. I just thought I would ask the group to see how you

have

> dealt w/ this situation. By the way, Elaney's Rheum appt went

well. She

> DOES NOT HAVE ARTHRITIS IN HER HIP!!!!! The dr thinks it was

muscle

> pain. He thinks she may have JRA in her chest near the sternum,

but has

> no idea why her sternum sticks out. I wish somebody knew!!! She

will be

> OFF the Prednisone in 3 weeks!!!!--- & Elyssa(7) & Elaney

(12

> poly)

>

[Guest guest]

Helen:

Keep me posted on who from you family is going. Hannah's older brother, Jay,

is 11 (will be 12 in Nov) and he would love to know ther is another brother

going his age.

hburger64 <hburger64@...> wrote:

,

Nick is 8 ( going to be 9 in 3 weeks) he has 4 older brothers

(23,16,14,11) and a younger sister whos 7.

Taking to AJAO has been such a blessing to us. She has been

twice and has such an understanding of what her brother goes though.

In Atlanta, she came out of her class one time and said she doesnt

think she would like to trade places with her brother, she wants to

stay just the way she is. Arthritis is no fun... She then proceeded

to tell me that Nicks arthritis can go away, but that it can come

back at any time. I then got a lecture as to how your bones need

calcium and she started listing off food rich in calcium!!!! I think

the sessions the kids do with the doctors and child life specialists

are worth the trip in itself.

I am hoping to take the whole family to Hershey next year. I think

its time the older boys had as much understanding of Nicks JRA as

their 7 yr old sister does.

Perhaps on your next appt you can ask the doctor to help explain to

your 7 yr old what her older sister is going though? Then start

saving and go to HERSHEY next year!!!!!! I cannot stress strongly

enough that every memeber of the family benefits so much from the

experience on so many different levels!

hugs Helen and (8,systemic)

>

> I have a question about how all of you deal w/ the sibling of a

child

> w/ health issues. Do your " healthy " children wish they had JRA or

start

> telling other people their health problems? Elyssa (7) has just

lately

> started telling people about her eye surgery as a baby and that

she has

> TMJ. At her last dental appt the dr said she had TMJ then asked if

she

> had JRA. I said no. And now she tells EVERYONE that she has TMJ.

When

> Elaney was first dx w/ JRA, Elyssa would ask when it was her turn

to

> get JRA. I said " hopefully never " . I think the kid feels left out.

I

> can see why. Elaney gets a lot of special attention. I always try

to

> give Elyssa her own special attention and try to show her how

special I

> think she is. I just thought I would ask the group to see how you

have

> dealt w/ this situation. By the way, Elaney's Rheum appt went

well. She

> DOES NOT HAVE ARTHRITIS IN HER HIP!!!!! The dr thinks it was

muscle

> pain. He thinks she may have JRA in her chest near the sternum,

but has

> no idea why her sternum sticks out. I wish somebody knew!!! She

will be

> OFF the Prednisone in 3 weeks!!!!--- & Elyssa(7) & Elaney

(12

> poly)

>

Beth Yohnk

Happy Thoughts..Be Well

[Guest guest]

Our used to have issues..but after having to go to the hospital with

them a lot, he has learned it isn't such a " special " time, afterall.

Of course it took him years to learn to deal with it.

Do a search for sibshops in your are.I may have a link on the SDA

messageboard www.shwachmandiamondamerica.org

<http://www.shwachmandiamondamerica.org/>

I have not been keeping up with mail. My J is having neurosurgery in 2

weeks. Dealing with protocol, etc has been kind of nuts. They have decided

that we will infuse the night before surgery and do a CBC if the ANC is low

we will give an injection of Neupogen..

I've been thinking about everyone.just been busy

Peace Be With You,

Pattie

" Success is not final, failure is not fatal: it is the courage to continue

that counts. " ~ Winston Churchill

[Guest guest]

how common is it for PIDers to have SPD ? Sis has been diagnosed also, is

seeing an OT, which is really slow, she can't stand for anyone to touch

her......a big thing the OT does is " open hand " if she has to show Sis how to do

something. The OT also started a program to desensitize her some.

Our son has always been really jealous of all the " attention " she gets. I've

said the same thing, " you don't want to be that sick do you " . Now he's

thirteen, it seems he hit that age and is now more understandin about it. He

even helps trying to calm her down when she's hypersensitive overload. We call

it a " blowout " .

Lynne' mom to Sis- igg def, subclasses low, severe asthma, reflux, pseudo

tumor cerebri, sensory processing disorder, central processing disorder, etc.

osdbmom <osdbmom@...> wrote:

For those of you with a family having some kids with PID and one or

two w/o, do you find those " leftbehind " kids are having some issues?

It seems like Olivia is almost jealous that the others are going thru

this. I tell her, You wouldnt want to be sick like this, would you? I

spend plenty of time with her, focusing on her. I even took her to

IVIG a couple of times with us, thinking if she saw how difficult it

is, she would understand more......but all she sees is the other kids

get a happy meal and get to play video games. She wants me to let her

skip school on IVIG days. She is getting irritated when her sister

stays home from school sick.

I am trying to see this from her point of view. Now she is jealous

that Savannah and Brennan are starting private OT(yes, Savannah is

officially diagnosed as SPD, so any help there would be appreciated).

Anyway, Im trying to see this from her point of view, and cuddle her

and play just with her or read to her, just the two of us. But I find

her getting more and more clingy...and some of that could just be age,

or whatever.....Im just not sure of how to handle that.

And on the other hand, I have Savannah, who is convinced she is

stupid, bc of her reading issues--which will hopefully be helped with

the OT---but she feels inferior, and hates that people know about her

health problems. Like, her class won an ice cream party. Well, last

yr, the vice principal bought her some soy ice cream so she could

participate. I hadnt heard anything, so I went to him and reminded him

she would need that ice cream for the party tomorrow and he said he

would get it. Then we got in the car and Savannah was all irritated

still. Someone else is bringing in MI/MI State cookies tomorrow, and

she says, Now I have to tell someone ELSE I am allergic to milk and

eggs. I thought she was upset over the cookie, so I reminded her she

has her special snack box in the closet at school. And that wasnt it,

she is just actually upset that someone else has to KNOW. She is

getting to where she feels like if people know she has medical issues,

and reading problems, etc, it makes her different and dumb.

Now, I have tried the route of " everyone has something.... " diabetes,

glasses, whatever. And the typical things you would say to a child.

But that doesnt make her feel any better about it. Not sure what to do?

Valarie

Love, hugs and kisses

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

Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates

starting at 1¢/min.

[Guest guest]

In a message dated 10/5/2006 8:15:25 PM Central Standard Time,

osdbmom@... writes:

> Now, I have tried the route of " everyone has something.... " diabetes,

> glasses, whatever. And the typical things you would say to a child.

> But that doesnt make her feel any better about it. Not sure what to do?

>

>

Valarie:

I'd stay with the " everyone has something " philosophy but not mention it at

this time, maybe it's a case of she knows other people have it not so great,

but that doesn't mean it doesn't stink for her. Maybe she's mad and frustrated

right now and needs to vent that, and she'll get back to the " acceptance " stage

at some point.

My MIL is always trying to " cheer " me up by reminding me about kids that are

in a vegetative state, etc. The thing is, I KNOW we don't have it as bad as a

lot of people. And hearing about those kids just makes me more upset, for

THEM. But sometimes you just want to be mad because you don't have it totally

great. And I think that's fine. Do we have to be happy we have this problem? NO!

You get mad, get it out, then you can get back to just dealing with it. Someone

blowing sunshine up your skirt rarely helps. When gets in those moods I

am careful not to remind her about those who have it worse, I just say, " I

know. It stinks. "

Those things you are doing like the video games and happy meals and all, I

think it really does help, because it has to feel like there's something

positive you can take from an unpleasant experience, you know?

My non-PID got stung by a yellow jacket two days in a row. The first day she

was crying and freaked out and all upset, but then I would be too, it was

right by her eye. I checked her out and then said, " You know what happens when

you

get stung by a bee? " and she looked all concerned and asked what. I said,

" You get a treat! " So the next day she got stung again, didn't even cry, and

said, " Mom, do I get another treat for this one? " I hate to associate pigging

out

on sweets with something unfortunate happening, but jeez kids need something

fun to take the " sting " out of life.

It sounds like you're doing the same things I'd be doing, so I guess I'm just

rambling to let you know I don't have any real advice!

(mom to , age 7, dairy intolerant-related GERD -- currently has

polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other

defs... and also to Kate, age 4, more dairy intolerant but very healthy!)

[Guest guest]

Hi Marie-

My own personal take on when to involve is as early as possible! One

of the things we are finding here is that, while siblings are usually

not responsible for deciding care, placement, etc., it can be helpful

to get their input as much as possible (if they want to be involved,

that is). Some siblings are ambivalent about being involved, so maybe

it would be more about informing them instead of discussing with them-

does that make sense? It sounds like since you have expressed that

you want them to be involved that they might find the opportunity for

input valuable. How much do the two of them want to be involved?

The second part to that by getting the siblings involved earlier, you

have more time to get them involved directly with the agency. Parents

spend years cultivating good relationships with staff and agencies; so

it makes sense to get siblings involved in that so that a) they will

be listened to in the event that parents can't be there and they

will be familiar with the ins and outs of an agency and will have to

spend less time on learning it all at once. One of the biggest

complaints I hear from siblings is that they are ignored or not taken

seriously from agencies (sometimes for legal reasons, sometimes not).

Finally, do you anticipate that both of your other children will have

equal responsibilities? Sometimes families break " care " down by area.

For instance, I know of one pair of siblings (an older brother and

sister) who now have joint guardianship of their brother with a

developmental disability. In their case, however, the brother is in

charge of managing the money side of things while the sister is more

involved in the day-to-day issues with the service agency.

I know of another larger family in which there are only siblings left

(mom and dad passed away a number of years ago). In their case, mom

and dad did not iron out the roles of the siblings in the care of

their brothers with disabilities, so they spent an extended period of

time sorting out who did what after their parents passed away. It was

very difficult for them because their parents did not tell them about

what resources they had available, nor did they know anything about

how to get services.

-