dawn

Scleroderma And Children

27 posts in this topic

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

Carolyn,

 

Hi. I have been away from the computer for a bit. Sorry it has taken so long to write you.

 

My daughter was on methotrexate for a little over 2 years, she was 6 years old and in kindergarten. Recently we thought her L. scleroderma was spreading and she was started back on MTX in October when she was 9 years old. For the 2 years she was on it she never had a problem but in October she got a luekopenic - once the MTX was stopped the body corrected the low WBC level with out a problem.

 

The scleroderma was found not to be spreading (by biopsy) so we didn't have to restart it again. We (my husband and I) wouldn't have a problem using MTX again if her linear scleroderma started to spread. She was a little cranky and tired the day after but we never had any problems with it. At this point she barely remembers getting the shots of methotrexate when she was 6 & 7. She was on 25mg/1cc injections once a week.

 

Before people/kids would ask her why her foot was purple but it is mostly faded now if I didn't tell you, you probably wouldn't even know she has L. scleroderma and the morphea on her hip has disappeared -I can't even find it.

 

I used to give her shots in the middle of the night (2 and 3 am), she would have a little wimper but mostly didn't remember that I had given her the shot in the morning. You give it with an insulin syringe so the needle is very fine and short.

 

The best advice I can give you, is follow your heart and have a good doctor that will monitor your child closely. The right thing for your child isn't always the easy route to take. Methotrexate was a success for her but broke my heart to give her... and hopefully it will continue to be a vague memory for her.

 

It is helpful to chat with other parents that really understand the agony this disease causes the whole family!

 

Keep in touch.

Dawn

Share this post


Link to post
Share on other sites

Hi again Dawn. Thank you so much for the information on Methotrexate. I've come across a few people who have had their kids on it without any side effects. This is definitely encouraging news, as the specialist scared the pants off me with his list of side effects!! We may have to go on to our third specialist, as this one seems very unwilling to treat the morphea with anything other than Diprosone. He believes it is fairly superficial and unlikely to cause any bone growth problems etc, but the fact that it is spreading across his face is of great concern to us......especially if he's wrong about it causing permanent damage!! I might have to pull out the old line.."What would you do if this was YOUR son??"

 

Anyway, I'm busy googling specialists in my area and will hopefully come across someone who has had a bit of experience with it.

 

I'm so glad your daughter is going well and that her injections are a distant memory. It's been such a comfort to hear from other parents who do understand exactly how I'm feeling.

 

All the best for a healthy happy year!

 

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