• Announcements

    • Joelf

      Upgraded Sclero Forums!   05/18/2017

      Welcome to the Upgraded and Redesigned Sclero Forums!!   Our Forums are even better and more up to date than before.   Happy Posting to all our Members!!
dawn

Scleroderma And Children

27 posts in this topic

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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)

Share this post


Link to post
Share on other sites

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?

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

Jennifer,

 

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

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hi, my son was diagnosed with Limited systemic scleroderma last spring when he was 16. He is on MTX, has seen a specialist at UCLA and is doing very well. We are very happy with our Rheumatologist here in Utah. There is a great site for kids with Juvenile Rheumatic Diseases. It is a Yahoo group. I don't have the exact site, but you can find it pretty easily. I have gotten a lot of good info there.

 

Susan

Share this post


Link to post
Share on other sites

Great to see the responses. The internet can trully be an incredible thing. This can be very hard seeing our little girls having to go through this. The most frustrating thing so far is really making decisions on treatments.

 

Me and my daughers mom are divorced and my daugher lives with her mom. We fortunately all have a very good relationship. It was hard seeing my ex-wives reaction and all the pain she was going through after she found out about our daughters decease. And of course nobody knows anything about it. So I've tried to support my daugher and her mon as much as I can, and try not to think too much about it myself, basically keeping busy at work and doing as much research about Scheroderma as I can. All three of us go together to all the appointments after appointments we've gone through. My daugher seems to enjoy all three of us going together. Thank goodness I have a decent insurance plan. It's incredible how expensive all this is.

 

Alycia, my daugher first started taking 10 mgs of Nifedipine, three times a day and 10 mgs of Prednisone four times a day. It didn't really hit me until we went to buy her her pill case that could fit seven pills a day, devided by times of the day rather than just days. She then had her Prednisone reduced to twice a day and then her Nifedipine increased to three.

 

Not much progress unfortunately and her rheumatologist wants a more agressive treatment. So far she is just showing skin symptomes, but she is borderline on her lung tests, and the doctors want to continue testing to make sure there isn't any lung damage.

 

We went to get a second opinion and the second rheumatologist was not as keen on Prednisone and felt that Methotrexate and bosentan are the next step. her doctor wants to combine those Cytoxan and treat more agressively. and of course the decision is on us. Meanwhile my little girl is getting teased at school for her gain in weight. She has made a new set of friends that have been very supportive in school and she hates missing school.

 

Hope to keep in tough with people in this forum. Hopefully we will all unite and find a cure for this ugly decease.

 

Alberto,

Alycias dad

Share this post


Link to post
Share on other sites

Hi Everyone,

 

I just received Dr. Lehman's book in the mail today, and I read about half of it. I highly recommend it to anyone who has a child with a rheumatoid illness. Some of the issues I have brought up in this forum are addressed in his book, and I feel that my daughter's rheumatologist is current and informed. His book has also made me realize that family medical history is so important to think about when looking for a source or cause of illness--even if it doesn't seem related or relevant. Thanks to those of you who have emailed me about your experiences with Dr. Lehman--I am looking forward to meeting with him personally, hopefully this spring.

 

Thanks,

Jennifer

Share this post


Link to post
Share on other sites

Hi Dawn,

 

So sorry to hear your daughter has Scleroderma. My 4 year old son has just been diagnosed with localised Scleroderma or Morphea. At this stage they are confident it has not affected any internal organs, only the skin. He has a mixture of brown & white lesions all over the left side of his face. I am interested if any treatments you've tried have been successful and if there were any side effects. I know the treatments can be different depending on which form of Scleroderma it is....

 

It is so hard when it is happening to your child, as you can feel totally helpless and don't want to accept the fact there is no cure as yet. I work with a natropath who is madly trying to find any natural treatments that don't have the severe side effects of some of the modern medicines. I will let you know if he finds anything of any value...

 

Take care,

Carolyn

Share this post


Link to post
Share on other sites

Hi Jennifer - so sorry to hear about your daughter. It's a heartwrenching thing when your child is sick. My four year old son has recently been diagnosed with morphea which is spreading all over the left side of his face. Would be greatful to hear if there's any treatments you have tried which have been successful.

 

Warm regards,

Carolyn

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now