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Scleroderma And Children


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#1 dawn

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Posted 30 December 2006 - 02:06 PM

hey to all,
my name is dawn and my daughter was diagnosis. with scleroderma 3yrs. ago when she was in K-garten at the young age of 6 (she is currently 9yo). I've read most of the personal stories and postings and it seems most are about adults.

our daughter (baby-cakes) also has juvenile diabetes and celiac disease.

any other parents out there? DAWN

#2 Elehos

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Posted 30 December 2006 - 02:51 PM

Hi Dawn,

There's another lady named Margaret with an 18 yr. old son recently diagnosis'ed, and although there are some others, I can't recall their names at the moment. Keep aksing in case they're not online for a few days and miss your posts. As soon as I can recall their names, I'll post them or send you a message if you don't mind.

I'm so sorry about your daughter, and do hope that she gets all the medical help she needs!

Best wishes to you and your daughter,
Elehos

#3 Sweet

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Posted 30 December 2006 - 02:54 PM

Hi Dawn,

Welcome to the forums, but I'm sorry it's due to your daughter being ill. You will find a lot of information, support and friends here.

There are a couple of other people here that have children will Sclero, so I'm sure they will chime in soon.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#4 Louxx

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Posted 30 December 2006 - 02:59 PM

hi dawn.
i'm not sure if you'd classify me as a child. I'm 18 years old. have had linear scleroderma since I was 8 years old(or 9 years, I forget)
what type of scleroderma has your daughter got?

#5 Heidi

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Posted 30 December 2006 - 02:59 PM

Hi Dawn,

Welcome to the forums! I am so glad you found us but sorry it is because your daughter has been diagnosed with scleroderma. I am sure that must be really hard for you especially as young as she is. Hopefully some other members with children will pipe in and share their experiences with you. Here is a link to some personal stories by caregivers so hopefully you can find some written by parents of younger children.

Again, welcome!

Warm wishes,
Heidi

#6 Margaret

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Posted 30 December 2006 - 03:04 PM

Hi Dawn.....my son is 18 and recently diagnosed with sine Scleroderma in Nov. I had him to the Ped rheumatologist on Thurs. and he said he's probably had it for years since his esophagus has stopped moving foods. Does your daughter have the skin problems or internal? I am new at all these terms, so forgive me if it sounds too harsh. I wish I could be of some help, but just wanted to let you know that you are not alone. My son is a dual diagnosed kid....Down syndrome and Autism. Unfortunately, his speech is so limited that pain is reflected in behaviors most of the time.

Is there anyone on this forum who has sS and has esophageal dismotility? How long did you have the disease before your esophagus stopped working? That may help me in deciding about when this all started.

Take care, Everyone.
Margaret

#7 dawn

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Posted 31 December 2006 - 03:13 AM

dear forum friends,

It is difficult to say what is going on because the sclero. is not following the "normal" pathway of a "typical" case of sclero. We're still in the process of figuring it out. She had what seemed like a typical case of Linear Sclero. and Morphea... now for some reason, within the last couple months she has unusual complaints and more skin involement. All of her back, chest to neck, left hand and right wrist, and left foot. The original spot was her right foot/ankle and calf/thigh. Also, recently diagnosis. with GERD and lots of GI complaints. Some days are fine, she gets up and is able to do all the things a 9yo does... but other days she seems too weak and her legs hurt. For instance, some days she is limping and other days she refuses to walk around at all, resorting to crawling on her knees. One night she went to take a bath and couldn't get out of the tub.

She already has so much going on living with diabetes and celiac (an auto immune response to ingestion of wheat, oat, barley, flour - like micro bombs going off in the small intestine blowing up the villa).

DAWN

#8 LisaBulman

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Posted 31 December 2006 - 04:16 AM

Hi Dawn,
I am so sorry that your daughter has sclero and you are dealing with this! I am the one with sclero in the family but my daughter does have a condition where she will eventually need brain surgery and it breaks my heart. As a mom I feel helpless and it just seems so unfair when children get sick!

I hope you can find some sort of comfort here.

Hugs,
Lisa
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#9 Someone_Specials_Mom

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Posted 31 December 2006 - 08:26 AM

Hi Dawn! I'm sorry to hear about your daughter. My daughter has systemic sclero. She was 17yo when we found out. She was diagnosed at 2 with a hiatal hernia, which doesn't give her much problems anymore. She also has hypothyroidsim. The only signs of the sclero is a tendon rub in her finger. This is how we found out about the sclero. Her finger was bothering for a year before, ran losts for tests and phys. ther. nothing worked. Then the blood test where we found out. That is the only thing that still hurts her.

You found a great site. Everyone here is so nice and knowledgeable. It really helps to know there are others out there going through the same things you are, either as a care giver or a patient.

Keep us updated, I will be looking for you.

Darlene

#10 janey

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Posted 31 December 2006 - 09:04 AM

Dawn,
Your daughter sure has a lot to handle at such a young age. I'm so sorry to read about all the problems she is having. I hope you can find the support you need by having joined us here at the ISN forum. We do have a section on Juvenile Scleroderma. As you already know, it's not that common, but more and more studies are being done, so there is more information on it than 5 years ago. You'll find some of these recent studies when you scroll down to the research section.

Welcome to the forum! We hope you visit us often and please, keep us informed on how your daughter is doing.

Big Hugs to you both,
Janey Willis
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#11 emmie

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Posted 31 December 2006 - 05:49 PM

Hi Dawn,

I am so very sorry that your daughter has so many health problems to contend with. I don't think there is anything else that puts as much heartache and strain on a mom's heart.

Considering all that she has going on and the "unusual" symptoms, have you considered taking her to a university or children's hospital well known for diagnosing difficult cases? Something similiar to what Mayo is considered to be for adults?

I wish you the very best. Please keep us posted and may 2007 be the year that some answers and improvements come your daughter's way.

xoxo emmie

#12 Jordan's Mommy

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Posted 01 January 2007 - 07:54 AM

Hi All,
I am new here to posting, but I have visited this site many times. My 6 year old daughter was diagnosed with linear morphea/scleroderma just after her 5th birthday. I would love to chat with other moms or dads who are going through a similar experience.

Jennifer

#13 Heidi

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Posted 01 January 2007 - 08:28 AM

Hi Jennifer,

I just saw that this post was your first and I wanted to officially welcome you to the forums! I am so gald you have joined us and are posting messages, but I am so sorry it is because your daughter has been diagnosed with linear/morphea scleroderma. My heart goes out to you.

Again, welcome!

Warm wishes,
Heidi

#14 albertom

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Posted 01 January 2007 - 02:51 PM

My daughter is nine years old and got diagnosed in September 2006 with Systemic scleroderma with a possibility that she is in the CREST syndrome subset. Very new to this. We noticed in November 05 that her fingers were turning purple, and she was initially diagnosed with Raynod's phenomenon April 06. She was then refered to a Pedriatic Reumatology that eventually lead to her diagnosis.

So far we have only seen the Raynauds problems although her lungs are being monitored carfully, and still trying to determine if they have been affected. Very tought to deal with. Her main problems so far have come form side effects from her medication. We are now going through the process of making treatment decisions, and the two specialists we have seen, both that seem very competent seem to disagree on treatment. Alycia my daugher, is dealing with all this extremely well. Way better than her parents. She is a strong little girl, who's main concern righ now is the teasing form the kids in school to her bigger cheeks and tummy due to her medicine, and her fear of needles. It sems treatment is very controvertial which makes decisions so much harder

#15 Heidi

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Posted 01 January 2007 - 03:21 PM

Hi,

I see that you are new to our forums as well. Welcome! I am glad you have found us and joined, but sorry it is because of your daughter's diagnosis. That must be so hard for you.

Again, welcome!

Warm wishes,
Heidi

#16 dawn

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Posted 01 January 2007 - 04:02 PM

albertom,
your daughter is nine like mine. our daughter has diabetes and celiac (and sclero) so she sees endocrinology, gastrology, and rheumatologist. and her endo doctor was totally against her taking Methotrexate. it is hard to determine what advice to follow and to corrdinate it all. we gave the doses of MTX and I do believe it was the right thing. does your daughter have any skin involvement? does your daughter miss a lot of days of school? appointments and sick days add up. what state are you from? we're from Florida. how did they determine your daughter had systemic sclero? is it because of the raynauds?

Dawn

#17 dawn

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Posted 01 January 2007 - 04:06 PM

Jennifer,

Great to talk to you on the phone. Keep in touch. Dawn

#18 Sweet

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Posted 01 January 2007 - 04:13 PM

Hi Albertom,

Welcome to the forums! Really glad to see you post and as you can see you will find a lot of support, information and friends here.

Looking forward to getting to know you.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#19 emmie

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Posted 01 January 2007 - 06:15 PM

Hi moms of kids with sclero, etc.

My niece is a survivor of leukemia. She was diagnosed in kindergarten. I am a former Pre-k teacher in the public school system.

One of the best things my sister and her husband did was to set up what is called an IEP in our state; that is an Individual Education Plan. In this way, plans were in place in the case that she missed too many days of school that she received at home tutoring; if she need physical, occupational or speech therapy due to any medication side effects, the plans were in place that she get it, and so on.

In other words, all possible scenarios were anticipated (or tried to be) and incorporated into the plan so if they occurred, time was not wasted and the needed services were ready to go.

Just thought this might be of some help. I'm so sorry you have to go through this with your little ones. My heart truly goes out to you. It is not easy working through their fears and yours. My niece seemed seemed to benefit from talking with the social worker at school, the art therapist where she received her chemo and she currently sees and child psychologist.

I might also brag that she actively raises money for a leukemia organization and has completed 2 kids' triathlons for this org. She has grown her hair and had it cut and donated it to an organization that makes wigs; she has had her head shaved for an organization that raised $$ for children's cancer research. She is a beautiful, fifth grade honor roll student with a wonderful sense of humor and a heart of gold.

Sorry I got carried away, but as you can see, quite often these challenges bring out some things in our kids that are quite remarkable. I wish you and yours all the very very best! Keep us up to date.

xoxo emmie

#20 janey

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Posted 01 January 2007 - 06:37 PM

WOW - The lessons we can learn from children. Thanks for sharing Emmie.

To Dawn, Jennifer and Albertom - Welcome! Looks like y'all have a lot in common. I'm glad this forum has been able to bring you all together. My heart goes out to all of you and your children.

Big Hugs,
Janey Willis
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