Jump to content


Congrats to Margaret, Platinum Member with 1,000 posts and 10 Years of Forums Membership!


Photo

15 Year Old Daughter Has Morphea


  • Please log in to reply
8 replies to this topic

#1 Lisa Potter

Lisa Potter

    Newbie

  • Members
  • Pip
  • 3 posts

Posted 19 August 2007 - 07:11 AM

My daughter is 15 1/2 and was diagnosed with morphea over 2 years ago and has started getting blisters on her knees and elbows. The blisters are round and about half the size of a dime. We have kept antibiotic creme on them but they seem to take a while to heal. We have just notice this in the last month or so and they seem to heal and then she will get another couple. They almost look like an ulcer you would get in your mouth but a little larger. Any feedback would be helpful. We have our annual appointment in Oct (Pediatric Rheumatologist) for follow-up on the morphea.

#2 jefa

jefa

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,325 posts
  • Location:Scotland

Posted 19 August 2007 - 09:00 AM

Hello, Lisa. First of all let me welcome you to the ISN Sclero Forums. I am so glad you found us and hope you will soon get into the swing of things posting, reading and getting to know the other forum members. I am sorry to hear about your daughter's problem with blisters. To be honest, I am not that familiar with the progression of morphea, but I haven't seen any description of accompanying blisters. Perhaps someone who has direct experience with localized scleroderma can share their thoughts on this. In any case, if it were my daughter, I wouldn't want to wait until October to have someone look at it, especially if it turns out to be a separate problem. Here is a link to our page on Morphea for your general information. Hugs to you both.


Warm wishes,
Jefa

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#3 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,892 posts

Posted 19 August 2007 - 11:26 AM

Hi Lisa,

Welcome to the Sclero Forums. I'm really sorry to hear about your daughters morphea.

Carrie gave you a great link, I hope it's helpful to you. Here is a link that discusses several aspects of skin involvement. I hope this helps.

I look forward to knowing you and your daughter better.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#4 janey

janey

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,118 posts
  • Location:New Mexico

Posted 19 August 2007 - 03:13 PM

Lisa,
Welcome to the forums! I'm sorry you have had to join us due to the problems that your daughter is having with morphea. You have been given a couple of great links. There are a lot of different ways that the skin can be affected, so hopefully you'll find an article that describes the blisters that your daughter have.

Can you move her rheumatologist appointment up? With this new symptom maybe she could get in earlier. It's always worth a try. Please let us know how your daughter is doing. I hope she finds a solution soon.

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)

#5 epasen

epasen

    Silver Member

  • Members
  • PipPipPipPip
  • 233 posts
  • Location:Lohja, Finland

Posted 21 August 2007 - 08:08 AM

Lisa,
sorry to hear that your daughter has morphea. I know it can be hard to look different when you are a teenager. She's still lucky for having the affected areas on places where she can hide them if she wants. I have learned to be totally okay with having linearic scleroderma on my left leg + side + back, and so have my friends too.
Take care,
Emmi

#6 Lisa Potter

Lisa Potter

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 3 posts

Posted 06 November 2009 - 08:11 AM

My daughter is almost 18 now and was diagnosed with linear scleroderm about 2 1/2 years ago. She was on methotrexate and then on cellcept and has just come off of all meds and seems to be doing well. She still has her aches and pains, but seems to be handling the pain. She is using pain patches because her backpack hits the spot on her back that became Linear Scleroderma. Her joints continue to ache and we have discussed her going back on the cellcept, but she really did not like the side effects and would like to try nothing for a while(3 months now yeah).

My son (both son and daughter biological, but adopted - no family history) who is 15 1/2 has been suffering for a year with hip joint contracting and JRA (juvenile rheumatoid arthritis) like symptoms in all major joints. X-rays rule out RA (rheumatoid arthritis). He and his sister are ANA positive. He has tested high in C REACTIVE protein and his test in ANA were higher than his sisters. We are working with the Genetics team and should get the full report in February. They have so far said there is a mutated gene but it is rare and may take years or they may never know the problem. My son's skin on his hands and arms is very tough like his sister's back. The doctor is not yet convinced that it is not scleroderma but many times says he does not think it is. During every visit he pinches the skin on his arms and says they do not feel normal. He has worked with children with scleroderma so that is good. My son's ankles, wrists and hips are very tight and have limited mobility and every doctor has commented as such. The doctor is now conducting a deep tissue biopsy and hopefully that may rule out something. He has had MRIs and full body xrays and still negative. All major illnesses ruled out lupus, MS (multiple sclerosis) and JRA. He has made many self modifications since he can't tie shoes, button shirts, open small bottles etc. He sleeps with ice packs and his hands look very similiar to pictures on the web of people with scleroderma. Are their any other blood tests that scleroderma patients test positive in? Some of his other blood work has come back escalated but I don't know if those reports are even important?

ANTI-NUCLEAR ANTIBODY TITER #1 *1:160 Positive
IMMUNOGLOBULIN M *46 mg/dL [51-208]
SEGMENTED NEUTROPHIL *40 % [44-65]
EOSINOPHIL *13 % [0-9]
BILIRUBIN,TOTAL *0.3 mg/dL [0.4-1.5]
ALKALINE PHOSPHATASE *307 U/L [24-280]
CARBON DIOXIDE *29 mmol/L [18-27]
BAND NEUTROPHIL *10 % [0-6]
LYMPHOCYTE *18 % [25-46]

If he did not have so many of his sisters issues I would not be thinking twice but I have to at this point.

#7 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 06 November 2009 - 11:25 AM

Hello Lisa

Welcome to the forum although I am sorry it's because of your childrens' health issues. Having one child ill is hard enough but two must be very difficult, particularly as you don't yet have a diagnosis for your son.

I am not medically trained so am unable to give you a definitive answer regarding the significance of your son's recent blood work and I would suggest that his doctor is best placed to advise you. I do appreciate that you are hoping for as much information as possible as quickly as possible but here at ISN "we provide basic support and general information because we are not doctors and even when expertise is acknowledged or claimed, always consult your doctor for medical advice."

What I can tell you, from my experience, regarding blood tests is that there is no one blood test that rules scleroderma in or out which is why scleroderma is best diagnosed on the combination of blood work,symptoms and often a biopsy. I have systemic sclerosis and my ANA (anti nuclear antibody) is negative and my rheumatoid factor is normal despite the fact that scleroderma is a rheumatic disease. I was diagnosed on the symptoms/biopsy combo as my blood work said there was little wrong with me.

Hopefully when the biopsy results come back you will have a diagnosis for your son so that the right treatment can be given to ease his symptoms.

Please keep us informed and take care.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#8 Lisa Potter

Lisa Potter

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 3 posts

Posted 09 November 2009 - 09:05 AM

Thank you for your response. I wish they would have done the biopsy early. He has been undergoing testing for over a year now. I will update when we get the results.

#9 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 09 November 2009 - 01:37 PM

Hi Lisa,

I'm sorry to hear about both your daughter and your son. Have you considered having your son seen by a scleroderma expert? Only a few centers have scleroderma experts for children, but most rheumatologists and even pediatric rheumatologists, have little if any experience in diagnosing or treating scleroderma (either localized or systemic).

I'm a bit worried about your son sleeping with cold packs. Why would that be? Please keep in mind that I have no medical training at all, in fact, I can hardly open a prescription bottle, even when closely following the directions. But as I understand it, cold can be very bad for scleroderma, inducing attacks of Raynaud's and such.

If he is doing it for pain relief, then perhaps another method could be used? (Pain relief creams, pain medications, etc.)


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

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