Hi! My 10 yr old daughter was just recently diagnosed with Morphea/ Linear Scleroderma after 3 years of no answers on the mysterious painful rash on her neck.
At first it was raised and ran along her hairline behind her right ear... doctors thought it was swollen lymph nodes.
Now, the swelling is gone but where it was it is dark and sunken into her neck as well as is still sensitive.
She was diagnosed with Polyarticular JRA at 10 mos old- but had her first swollen joint (left middle finger) at 7 1/2 months old.
I am very new to scleroderma and am engorging myself with as much information as possible to find out more. It's already been a struggle to fight for her health with JRA and flareup's... Shriner's Portland, OR has been horrible regarding the disease and the rheumatologist there has all but just brushed us off which might have been better in the long run.
We turned to the only other ped rheumatologist in the area, Dr. Kingsbury, who has been WONDERFUL and has diagnosed Abbie with the Scleroderma as well as TMJ and put her on Enbrel which we had yet to start this week at some point.
Any info anyone has would be wonderful!
Here are the images from her initial rash flare up:
http://www.sxc.hu/photo/589946
http://www.sxc.hu/photo/589947
-Jyn
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Newly Diagnosed: Morphea/ Linear Scleroderma
- By Jynuine
- Posted June 15, 2009 at 12:42 am · 13 replies
- In Juvenile scleroderma
- Shared with the public
- Edited June 15, 2009 at 12:44 am
Explore topics in this discussion:
Scleroderma Lyme disease Morphea Linear scleroderma Methotrexate
13 replies
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- By mimi-55
- Posted June 15, 2009 at 3:19 pm
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i am so sorry for your daughter and all of you. i have bi-linear sclero. it started out with bad headaches for me(hemeplegic migraines) and then i got a big line or dent in my forehead. if your daughter develops headaches you will know what causes them.i was 17 when i had my first headache. i was just diagnosed last year with sclero. evidently i've had it for 36 years and never knew what caused the headaches and other facial deformities. there are not too many doctors who know what to do about it. go to google and type in bi-linear scleroderma or encoupe desabre. it may explain a few things, also give these names to your doctor. i hope this helps. i also came across an article you might want to read or show your doctor. type in Antibiotic Protocol. i am going to mention it to my doctor this week when i go back.
good luck to you and God Bless you! mimi-55
- By Jynuine
- Posted June 15, 2009 at 7:05 pm
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Im sorry you are going through this!!!
And I will watch for the headaches, thank you!
- By Jynuine
- Posted June 15, 2009 at 7:05 pm
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Im sorry you are going through this!!!
And I will watch for the headaches, thank you!
- By luvmywonderfulkids
- Posted July 5, 2009 at 10:59 am
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My son was diagnosed with scleroderma at the age of 13 in April of this year. We went to all the doctors and did the research ourselves, and decided on the antibiotic protocol -- www.roadback.org. He has been on this since May and I do believe his patches are getting better. We decided to try this treatment before all the others because it is so much safer and so many people have had great success. If you would like to email anytime, please do.
Sue -- Ryan's Mom
- By mgs98
- Posted August 4, 2009 at 12:46 am
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Hi - I'm so sorry that your children (and you) are going through this rather scary maze. Good luck to both of you as you make your way through all the doctor visits, diagnoses, and treatments. Just being there for your kids and somehow "normalizing" it all is priceless for them. I'm a 51-year-old woman who was diagnosed with linear scleroderma and morphea at age 14. It wasn't always easy, but I've really been okay - I've been married for 25 years with 2 healthy kids and a pretty normal life. In my twenties, I had several reconstructive surgeries to correct the hemiatrophy in my face. I don't look perfect, but who does?!!! My mom somehow gave me the slack and extra support I needed in some areas (fancy lunch on doctor visit days), while still holding expectations high in others (academics), and I'll always thank her for that. God bless you both, and your beautiful children.
- By DaJoy
- Posted August 4, 2009 at 12:41 pm
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medically I can't say I have any personal experience with the symptoms your daughter has medically-practically I can say at school if she begins to have a hard time getting to classes on time (b/c far, or b/c has to stop at her locker to keep heavy books to a min) you can have a dr. note for this and she shouldn't get tardies.
however emotionally I have some words. I've had Scleroderma since I was 10 and in elementary school. Its very hard, especially since in elem the kids can't grasp the concept, and then in middle school they are immature and mean. Beware the school environment and try to keep an open daily dialogue. there is really so much more i could say but i don't want to clog up your comments. Feel free to email me anytime for any reason. May G-d grant her a complete recovery!
- By AR
- Posted October 23, 2009 at 11:06 am
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Have any of your children tried UVB therapy? My 7 year old started it this week and i'm hoping someone has good results to share with us. he has linear morphea in many different places only on the right side of his body. The docs are giving this treatment 2 months 3x a week and then if the lesions have not stopped spreading they recommend Methotrexate and an oral steroid.
AR
- By anncooper
- Posted October 23, 2009 at 12:20 pm
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I am so sorry to hear when children are affected with this evil disease. I really feel selfish that I am 47 and it has affected me for about 10 years and I feel sorry for myself a lot but I am so greatful that is me and not my child. Bless them all and I pray that there is an answer/cure for them soon.
- By Christine-2
- Posted October 23, 2009 at 10:50 pm
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Hi;
In case you did not know ...this type of SD is usually caused by Lyme disease which is caught from a tick or mosquito bite.There are only 2 realiable labs for testing,Igenex is the best and Quest comes in second.If the little one does have Lyme you need a Lyme literate doctor as this is very hard to cure.There is a lot of info on the Roadback foundation site so read their bulletin board at www.rbfbb.org and use the "search" at the top of the page to get those specific postings.
FYI ,I had a very bad case of SD and am now in remission by just using antibiotics.I take no others meds and only 100mg of minocin every second day
Lynne Christine
- By luvmywonderfulkids
- Posted October 24, 2009 at 2:12 pm
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Yes, we had Ryan tested at Igenex and the initial testing came back negative but he had 3 positive bands and some indeterminate. One of the bands that was positive was band 31 so I asked for further testing on that band and it came back positive for chronic lyme. We are scheduled to see Dr. J in CT in December and I am hoping that he will be on the road to recovery. He has been on 100 mg 2x day minocycline and his patches are definitely much better but he still can not bend his wrist or make a fist or straighten his hands out. The roadback website has been a god-send for me. I believe Ryan is on the recovery road because of everyone on there with all of their help and knowledge.
- By daniel2009
- Posted November 5, 2009 at 11:03 am
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Hi, My 2 year old neice has Morphea. Is there any cure? It was located on her inside upper thigh. Is there any information that you might have that could help. Please, thanks so much......
- By Christine-2
- Posted November 5, 2009 at 2:53 pm
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Hi Dan;
First of all,get her tested for Lyme disease.Getting a correct diagnosis is very hard as most labs are useless so read the bulletin board at www.rbfbb.org .Use the "search" at the top of the page so that you don't have to wade through all the posts.You will be overwhelmed with info so if you need help join the group and do a post giving your story.Maz,Lynnie or Kim will send you in the right direction as they all have Lyme to thank for their various rheumatic diseases
- By Jynuine
- Posted November 5, 2009 at 3:02 pm
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An interesting thing is that... Abigail has had this huge patch on her right inner thigh for about 4 months now. At first I thought it was an irritation from something, but it hasnt gone away and she keeps complaining about it. Its not red it's WHITE... Im thinking of taking her back to her specialist to have it looked at again.
When we saw him he said is was just an isolated Linear scleroderma and she shouldnt have any further issues with it. Im beginning to think otherwise.
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