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13 year old son with Morphea...nothing really working. Help.

morphea scleroderma

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#1 RaganM

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Posted 27 November 2012 - 10:58 AM

First and foremost, this is my first post in the forum after finding in a search. I've read many of your posts since locating and I can relate to many of the posters very easily. I am located in Houston, Texas also, just for clarification.

My 13 year old son has had the dry alligator-type skin since he was very young. In the winter it is a lot worse, becoming very dry and flaky. He developed a hard patch of skin on his inner thigh about a year ago and we really didn't know much about the cause. Really just thought it was simply part of his dry skin. I've researched hours and hours online about morphea and scleroderma and my son is being treated at the UT Medical Center here in Houston. He is currently taking methotrexate once a week, folic acid on the other 6 days, applying a topical ointment prescribed by the doctor each day for 2 weeks on - 2 weeks off, and using various recommended lotions and creams. He has developed another patch on his rib cage that is approximately 4 inches long, a patch on the top of his foot that is about the same size, and 4 round patches that seem to be starting to develop on his bottom.

I guess I am just really frustrated as a father when there is nothing that I can really do. We went back to the dermotologist yesterday and continue to get the same answers...just continue to take the medicine and monitor things. The infected areas have not changed much and new areas continue to pop up even though he has been on the medicine for many months. I am getting concerned about possible long term effects of taking the methotrexate and don't really know where to turn.

Not really sure what I am asking, if anything, other than wanting to be pointed in the right direction or to be told that we are on the right path. Just a confused and worrying daddy.

#2 Shelley Ensz

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Posted 27 November 2012 - 12:59 PM

Dear Ragan,

Welcome to Sclero Forums! I'm sorry that your son has morphea and that his treatments don't seem to be very helpful yet. There is a scleroderma center at UT Houston, so is your son is being seen/supervised or somehow consulting with that special department?

You may also want to review our section on Morphea Treatments and see if there is something else to try, such as UVA1 Phototherapy, "Phototherapy is an effective therapeutic option in scleroderma and should be considered among the first approaches in the management of localized scleroderma or morphea."

I hope that you find something soon to start improving your son's morphea. We are glad you've found us and please keep us updated on your progress.

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Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 Margaret

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Posted 27 November 2012 - 03:07 PM

Hi Ragan ,

I don't have much knowledge on Morphea but my son was 18 years old when diagnosed with sine scleroderma, later switched to UCTD because he doesn't have skin issues or Raynaud's. It's a scary path to watch your child go on when there is nothing you can do to help, except follow the doctor's orders and hope it goes into remission. After reading the web, when my son was first diagnosed, I thought for sure he wouldn't live long. Everything I read was soooooooo depressing!!! :crying: He started Plaquenil 8 months after initial onset of disease and things slowed down. The biggest *problem* we faced was the simple fact that he was male and so young. I forgot the odds of him having scleroderma, but they were REALLY up there!!! :emoticon-dont-know:

This group has been my lifesaver.....whenever I have questions or need assurance, there is always someone who can help out.

:emoticons-clap: :emoticons-thankyou:

Take care, Everyone.
Margaret

#4 Joelf

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Posted 27 November 2012 - 03:38 PM

Hi Ragan,

Welcome to these forums!

I'm very sorry to hear that your son has morphea and that you're feeling so worried and frustrated with his treatment. Unfortunately, Scleroderma is a very frustrating and worrying disease, not less because it manifests itself in many different ways and is very difficult for even experienced specialists to diagnose and treat. So often this can mean rather a wait and see policy. As Shelley has suggested, it is important that your son is dealt with by the specialist department at the UT Medical Centre to ensure that he is receiving the best treatment available.

Now that you've found our forums and joined our community, please do let us know how your son is faring and how his treatment is progressing.

Kind regards,

Jo Frowde
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#5 miocean

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Posted 29 November 2012 - 08:30 AM

Hi RaganM,
I am glad you have found this forum and know it will help you and your son through this journey. You are a great dad to be so concerned about your child. There are many people with morphea here that can share their experiences and help answer your questions.

I will chime in and recommend a scleroderma specialist. If you are seeing several different doctors they may not all be on the same page. Also remember that all medications have their risks and are used because the benefits outweigh them.

Since your are having treatment in Texas I am guessing you live in a warm climate where summer clothes would leave much of your son's skin exposed. Try to make him feel as normal as possible, especially as he heads into those teenage years where so much is based on appearance.

Please continue to return and update us on his progress and take care of yourself as well. Margaret has been a wonderful advocate for her son and Gareth has made remarkable achievements because of this.

miocean
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#6 nickisboi25

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Posted 01 December 2012 - 04:20 PM

Hi RaganM,

Welcome to the forums, trust me you'll find amazing support and even more amazing people. This is the first time I've commented on someone else's post but I hope I can help.

I'm a 25 year old male with Morphea. I started developing darker patches on the right side of my abdomen when I was around your son's age. To this day I've been incredibly fortunate that they haven't really developed into anything more and have never given me pain. Now they just look like patches of darker skin that have a slightly waxy texture to them and are slightly indented. Everyone is different and I'm sure the uncertainty and rarity of this disease are some of your main concerns. They certainly are for me.

I urge you to take advantage of any specialist treatment that is on offer to your son. I have an absolutely amazing doctor but a specialist Scleroderma facility is something I don't have. Also if you have any questions...ask, ask, ask! There's no such thing as a stupid question.

Finally, as Miocean mentioned, try your hardest to make your son feel as normal as possible. I can relate to this SOOOOOO much! I'm not saying this to scare you but to be honest. Chances are your son will feel different and possibly unhappy at some point. Being a teenager is hard enough without Morphea. We live in a world where an unhealthy emphasis is placed on the superficial. I'm 12 years older than your son but I'm still in that age group the media loves to target with it's delusional ideals of beauty. I'm telling you now, don't think young guys don't feel pressure to "measure up".

I really hope I could help. I've been through (and still going through) so many psychological factors because of my Morphea and I don't want that for your son. Keep us updated, all the best.





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