Re: JRA and other autoimmune diseases

[Guest guest]

Has she lost all of her hair or just some? Poor kid.. I had temporary

hair loss when I was eight years old due to whatever they first used in the no

tears formula of the kids shampoo.. They first thought I had the beginning

stages of Alopecia because it was coming out in clumps with no other

explanation..

But once we stopped the shampoo..my hair grew back..very odd.. I'm so proud

of what a brave girl. Although Alopecia isn't painful so many kids

would be so afraid to deal with the teasing. If worse comes to worse she can

get

a free wig from locks of love.

As for the autoimmune part I have a double or tripple I dunno autoimmune

thing.. I not only have Poly JRA but also Spondy (same category I guess) and

Asthma... which I guess is an autoimmune disease. Twelve is one of those

vain years but isn't letting it get to her that's awesome.

Lots of Love

(poly Jra and Spondy, 19)

[Guest guest]

I hope this is ok to post but on the other JRA message board I keep

tabs on there is a mom there whose dd has JRA and alopecia. I'm sure

she would be happy to talk to you and help you get a handle on all

this. She has been dealing with both for years now. I don't remember

her name/screen name but she is a regular on there. She mentioned her

dd having alopecia when I was concerned about Jordans hairloss with

vioxx.

Here's a link to that forum. Sorry if this is out of line or

anything.

http://www.network54.com/Forum/251545

Jordan 3 PolyJRA

> I wondered if anyone on the list has a child with JRA who has also

been

> diagnosed with another autoimmune disease. (12 with polyJRA)

has

> recently been diagnosed with alopecia areata. I had hoped that the

hair

> loss was due to the anemia or the meds, but no such luck.

Thankfully,

> is a trooped and hasn't let this get her down, but I'm

definitely

> feeling an overload of " mommy guilt " . Silly, I know, but....

>

> Liz

>

>

>

[Guest guest]

Thanks, . I think you may be referring to Bonnie. She and I have

" talked " about the hair loss before and she is a big help.

Liz

Re: JRA and other autoimmune diseases

I hope this is ok to post but on the other JRA message board I keep

tabs on there is a mom there whose dd has JRA and alopecia. I'm sure

she would be happy to talk to you and help you get a handle on all

this. She has been dealing with both for years now. I don't remember

her name/screen name but she is a regular on there. She mentioned her

dd having alopecia when I was concerned about Jordans hairloss with

vioxx.

Here's a link to that forum. Sorry if this is out of line or

anything.

http://www.network54.com/Forum/251545

Jordan 3 PolyJRA

[Guest guest]

,

has patchy hair loss. Some of the patches are small but others are

quite large. Thankfully, the biggest ones are still fairly easy to hide,

which does help her. She also has almost no hair left on her legs, which

she laughs about~~ says now she doesn't have to worry about shaving her

legs like the other girls!! Of course, I still think 12 is a bit young

for that anyway!

You're right; the alopecia isn't painful at all. It is the emotional

aspect that concerns me. As I said before, is handling it well.

But next year she'll be in 7th grade at a new school. She's been in a

center for gifted children for the last 4 years, with the same 55 kids

in her grade all 4 years. They've grown up together and so they have all

known about 's health issues all along and are very supportive. I

think I worry more about the transition than does. :-)

I think asthma is an autoimmune issue as well. I just wonder how many of

the kids, like you and , do end up with more than one thing.

Liz

Re: JRA and other autoimmune diseases

Has she lost all of her hair or just some? Poor kid.. I had

temporary

hair loss when I was eight years old due to whatever they first used in

the no

tears formula of the kids shampoo.. They first thought I had the

beginning

stages of Alopecia because it was coming out in clumps with no other

explanation..

But once we stopped the shampoo..my hair grew back..very odd.. I'm so

proud

of what a brave girl. Although Alopecia isn't painful so many

kids

would be so afraid to deal with the teasing. If worse comes to worse

she can get

a free wig from locks of love.

As for the autoimmune part I have a double or tripple I dunno

autoimmune

thing.. I not only have Poly JRA but also Spondy (same category I

guess) and

Asthma... which I guess is an autoimmune disease. Twelve is one of

those

vain years but isn't letting it get to her that's awesome.

Lots of Love

(poly Jra and Spondy, 19)

[Guest guest]

-Hi Liz,

Im sorry that has developed alopecia, this must be very hard

for you all. But you are such a strong woman and such an advocate for

the kids with JRA that im sure you will be able to help deal

with this and all thats involved being a teenager having this issue.

Im sure emily will do just fine.

I really dont know anything about alopecia so i hope i dont sound

ignorant, but can kids grow out of this?? i mean can it go into

remission and her hair grow back, or is it " once the hair falls out,

it never comes back " ?

hugs Helen and (6,systemic)

-- In , " Liz " <liz_smith@a...> wrote:

> I wondered if anyone on the list has a child with JRA who has also

been

> diagnosed with another autoimmune disease. (12 with polyJRA)

has

> recently been diagnosed with alopecia areata. I had hoped that the

hair

> loss was due to the anemia or the meds, but no such luck.

Thankfully,

> is a trooped and hasn't let this get her down, but I'm

definitely

> feeling an overload of " mommy guilt " . Silly, I know, but....

>

> Liz

>

>

>

[Guest guest]

-Hi Liz,

Thanks for the infomation on Alopecia.. i hope that the treatments

help . I think shes an amazingly strong young woman who has such

a support group behind her that this will just be a small bump in the

road. I think shes great to try the shots, it must be a little

daunting to face an injection into ones head.

Yes Nick has an appt this week, on thursday. I glad too, because ive

been reading up on vasculitis and to be honest it scares me.... now

that Nick has his 3rd " leasion " show up I wanted to try and find out

more, so i can ask the right questions and make more sense of what

she could say... Sometimes having access to the vast infomation

available online is not always good. It has made me wonder more about

other issues that Nick has going on and wondering if there is a link

between them all.... like the renal issues that a lot of children

with some of the forms of vasculitis.. Nick has elevated BUN levels,

how hes been complaining of tummy aches and i chalked it up to the

iron pills and stopped those a few weeks ago.Gastrointestinal

problems are another symptom. Im sure im reading too much into it

all, but you have to wonder how a lot of these things all tie into

each other. I guess i need my mind put at ease that Nick doesnt have

another issue going on. I just worry about him soo much..hes such a

small skinny, and I mean SKINNY little guy and i just want the best

for him....

hugs Helen and (6,systemic)

-- In , " Liz " <liz_smith@a...> wrote:

> Hi Helen

>

> You don't sound ignorant at all. Quite honestly, I am still

learning and

> knew very little before was diagnosed with alopecia. We're

still

> new at this and I still have a lot to learn. I do know that chances

of

> hair regrowing are somewhat better when loss is not total.

Thankfully

> fits into that category, although I think that losing body

hair

> (the hair on her legs) is not a good sign. There are a few

treatments

> available, though none is guaranteed to work. (Gee, we've all heard

that

> before, haven't we??) Anyway, one of the most effective treatments

is

> steroid injections into the scalp wherever there are bald spots.

These

> are given every six weeks, though I don't yet know how many

treatments

> are required. has decided to give this a try, so her first

> injections will be July 1st. The dermatologist said the needle is

very

> small and the injection is no worse than an Enbrel injection. Say a

> prayer that all goes well, please.

>

> As for outgrowing it..... My understanding is that the odds are not

in

> 's favor. I spoke with a woman from the National Alopecia

Areata

> Foundation and she said that although many people will have just one

> cycle of hair loss, it tends to be more of a challenge when it

begins

> during childhood. That said, there is still a chance. Of course,

there

> was also a chance that the arthritis would go into remission within

a

> couple of years and here we sit 10 years later, so I'm not holding

my

> breath for that one. I just want to make sure that 's teenage

years

> are not negatively impacted by all of this. So far she has a

wonderfully

> supportive circle of friends and that is a huge help. And we just

try to

> be understanding and supportive and will take this one day at a time

> with her. And I will certainly discuss outside help with her

> pediatrician should that be needed.

>

> How is ? Is his rheumatology appointment this week?

>

> Liz

>

>

>

>

> Re: JRA and other autoimmune diseases

>

> -Hi Liz,

>

> Im sorry that has developed alopecia, this must be very hard

> for you all. But you are such a strong woman and such an advocate

for

> the kids with JRA that im sure you will be able to help deal

> with this and all thats involved being a teenager having this

issue.

> Im sure emily will do just fine.

>

> I really dont know anything about alopecia so i hope i dont sound

> ignorant, but can kids grow out of this?? i mean can it go into

> remission and her hair grow back, or is it " once the hair falls

out,

> it never comes back " ?

>

> hugs Helen and (6,systemic)

[Guest guest]

Hi ,

No problem at all! That's what it's all about: sharing information,

advice, resources, contacts, anything that may help.

Thanks for sharing,

Georgina

sahm2jordan wrote:

> I hope this is ok to post but on the other JRA message board I keep

> tabs on there is a mom there whose dd has JRA and alopecia. I'm sure

> she would be happy to talk to you and help you get a handle on all

> this. She has been dealing with both for years now. I don't remember

> her name/screen name but she is a regular on there. She mentioned her

> dd having alopecia when I was concerned about Jordans hairloss with

> vioxx.

>

> Here's a link to that forum. Sorry if this is out of line or

> anything.

> http://www.network54.com/Forum/251545

>

>

> Jordan 3 PolyJRA

[Guest guest]

Hi Liz,

I never knew, until now, that alopecia was an autoimmune disease. I've

only known one person who has it. A teacher's aide at the elementary

school Josh & Kayla attended. They both loved her. I'm not sure if she

had childhood onset or if it began while she was an adult but she is

such a nice person, with a sparkling personality and an aura of

self-confidence, that her not having hair was accepted as just a matter

of fact and that was that. It suited her, even. Or, rather, she was

still very beautiful ... despite not having hair. She actually made it

seem almost stylish.

I imagine that it must be especially difficult for girls, young teens,

to come to terms with this kind of unexpected loss but is very

strong and well adjusted and has the needed support of her family and

friends. You've probably already been in touch with and received

information from the National Alopecia Areata Foundation. Did you know

that they also have a Pen Pal Program? That might be helpful for ,

to maybe become friends with someone else close in age who has it too.

You can fill out an application form online at:

http://www.naaf.org/support/support-penpal1.asp

I've actually bookmarked the foundation's website myself, to browse

through when I've got some time to read. A curious thing has happened in

the last year and a half or so and now I wonder if there may be some

connection. I rarely need to shave my legs anymore and it used to be at

least a weekly chore. I just chalked it up to changing hormones but I'll

have to read up on this.

Stay strong, Liz. Hang in there. You and are in our thoughts.

Aloha,

Georgina

Liz wrote:

> I wondered if anyone on the list has a child with JRA who has also been

> diagnosed with another autoimmune disease. (12 with polyJRA) has

> recently been diagnosed with alopecia areata. I had hoped that the hair

> loss was due to the anemia or the meds, but no such luck. Thankfully,

> is a trooped and hasn't let this get her down, but I'm definitely

> feeling an overload of " mommy guilt " . Silly, I know, but....

>

> Liz

[Guest guest]

Hi, Liz. has allergies and asthma in addition to the jra and

spondy. We were told they are all autoimmune diseases. Michele

JRA and other autoimmune diseases

I wondered if anyone on the list has a child with JRA who has also been

diagnosed with another autoimmune disease. (12 with polyJRA) has

recently been diagnosed with alopecia areata. I had hoped that the hair

loss was due to the anemia or the meds, but no such luck. Thankfully,

is a trooped and hasn't let this get her down, but I'm definitely

feeling an overload of " mommy guilt " . Silly, I know, but....

Liz