Scleroderma And Children
Posted 08 January 2007 - 05:47 AM
Posted 08 January 2007 - 02:37 PM
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.
Posted 09 January 2007 - 04:59 PM
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.
Posted 15 March 2007 - 05:32 PM
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...
Posted 15 March 2007 - 05:36 PM
Posted 16 March 2007 - 02:50 PM
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.
Posted 20 March 2007 - 07:32 PM
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!