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My Child has Scleroderma


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#1 Raecheal

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Posted 16 September 2009 - 06:43 AM

Hi, My name is Raecheal and I am here because my five year old daughter has been diagnosed with scleroderma/morphea. She has had two different diagnoses one of linear morphea and one of diffuse. I am currently looking for someone who knows SOMETHING about this disease. It seems that no one knows much about it and that's why I hit on the post about John Hopkins... I have called them in regards to my girl and am anxiously awaiting their reply. My daughter has acid reflux goes between bouts of constipation and diarrhea ... she has pain in her chest and back sometimes on her side. The doctors at Children's memorial seem to relate all of those things to her being over weight... I have thought about this and sat with it and it does not seem right to me I think all of theses things are scleroderma related... the more I read the more I feel that is so. I am begging anyone who knows about this especially from a pediatric point of view to share with me and everyone . I feel I have only touched the tip of the iceberg with researching this .. and want to hear directly from people who have experienced this and understand . Thank you for your time. And your story, Hopeful Mom

#2 Raecheal

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Posted 16 September 2009 - 07:05 AM

Hello everyone, I am a mother of one lovely little girl who is five and who has either linear or diffuse morphea/scleroderma according to her doctors. She too has acid reflux and gastro problems she fluctuates between constipation and diarrhea.

I am now finding from reading here and from my own experience that a doctor who specializes in this disease is needed because none of these tests have been done on my girl. They only have looked at her leg and other spots on her body (she has spot all the way up to her chest). They don't comment or hear me when I tell them of the pain in her back chest abdomen...and the gastro doctor seems to be attributing the problems to my daughter being overweight.

In my heart I feel it is all related and reading stories here my assumption is being more confirmed. I have followed the link by state and have called several different doctors from the list. I am determined to find a specialist that KNOWS something about this disease!!

My daughter is being treated with methotrexate a chemo therapy drug to suppress her immune system. Anyone ever have this treatment? Know anything about it? Have success with it? Her other symptoms are being treated separately with various medications.

I am worried sick. I am sending her to school even though she is crying everyday to stay home. I don't know if I am doing the right thing because her immune system is suppressed and because more than one post here mentions stress as a factor to flare ups.

I am desperate HELP US!!!!! Please,

Raecheal

#3 alice1

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Posted 16 September 2009 - 07:28 AM

Raecheal...So sorry your baby is sick. When I was trying to get in John Hopkins 7 years. ago
I just kept calling until I got an appointment. It worked. I don't know if Dr. Wigley sees children but he is wonderful. I have his email if you need it. Good Luck, alice

#4 Shelley Ensz

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Posted 16 September 2009 - 08:27 AM

Dear Raecheal,

Welcome to Sclero Forums! I'm just sorry it's because your daughter has morphea scleroderma.

You may want to consider the scleroderma expert center in Ann Arbor, Michigan.

It's also important to study the various Types of Scleroderma. Some types, such as morphea, affect primarily the skin and not the internal organs. However, about 25% of morphea patients may also have one or two symptoms outside of just the morphea. That doesn't mean they have full-blown systemic scleroderma (or that they will get it); just that they do have additional symptoms outside of the skin involvement.

From our page, Conditions Associated with Morphea, it says:

"A 2003 large multinational study found that 25% of localized patients had at least one other manifestation, such as osteoarticular, neurological (epilepsy, headache, peripheral neuropathy), ocular, vascular, gastrointestinal (heartburn), respiratory, cardiac, or renal. Less than 4% of the morphea patients had more than two non-cutaneous (non-skin) manifestations, and none of the patients in the study developed systemic scleroderma during the follow-up."

Systemic sclerosis is most commonly referred to as just "scleroderma" whereas morphea scleroderma is most commonly referred to as just "morphea" and that distinction might help you separate out the widely differing info you'll find. Morphea and diffuse scleroderma are two entirely differently things; however there is a rare form of morphea called "generalized morphea".

It does sound like your daughter might be on an apt treatment plan. I'm sure she's doing the right thing by going to school every day, otherwise her doctors would have prohibited it. Many people who are immunosuppressed keep on working jobs and going to school and outings, except when their immune system is severely compromised (like when undergoing a stem cell transplant).

You might want to consider doing two things. First, contacting the Ann Arbor scleroderma center (it should be on the list you have), and secondly, set up an appointment with her school counselor to see if you can get to the bottom of her resistance to go to school. It might be due to something entirely separate from morphea such as some teasing at school (etc.) and the counselor may be able to help set some things straight.

Anyway, I feel for you and your daughter. I hope that some expert knowledge and good support will help both of you feel a lot better able to cope with everything.
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.

#5 janey

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Posted 16 September 2009 - 09:25 AM

Raecheal,
Welcome to the Sclero Forums! I am so sorry to read that your child has two forms of scleroderma. Well you have certainly come to the right place for information and support. We have over 5000 pages of information on scleroderma, so just use our search button on the home and start surfing. In case you haven't found it already, we do have several pages on Juvenile Scleroderma. So that might be a good place to start.

It was very wise to contact John Hopkins. They have great doctors and specialize in this disease and other connective tissue diseases. In the meantime, you might also check out the information on our bowel dysfunction page. It might help you find ways to provide your daughter relief from the problems she's dealing with there. I know many of us have dealt with that issue. I, myself, have found that foods have a great effect on the outcome.

We do have many mothers and fathers in your situation. I'm sure you'll hear from some of them. Please stay with us and ask anything you need to ask or just come for a big hug. Let us know how you and your daughter are doing and how the John Hopkins contact works out. Again, welcome to the Sclero Forums!

Big Hugs to you both,
Janey Willis
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#6 Margaret

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Posted 16 September 2009 - 02:53 PM

Hi Raecheal ,

Welcome to the group. I am sorry your little girl is only 5 years old and going through this. My own son was diagnosed, at age 18, with sine Scleroderma. That was later changed to UCTD. It really doesn't matter what it's called, though, it's hard seeing our kids suffer so. He started with the esophageal dysmotility, 20 # weight loss, loss of voice, major fatigue, positive blood work, restrictive lung issues, very painful rib cage (costochondritis), and probable autoimmune induced depression. After 8 months, they started him on Plaquenil and his symptoms subsided for the most part....he still has some esophageal dysmotility. He, too, was diagnosed with GERD at age 10.

It will be 3 years this coming November when we started this journey. In the beginning, I was like you --- very upset with visions of an early death for my kid. After many questions to this group and lots of reading, I began to see how I was over-reacting and how far modern medicine has come in providing help for these diseases.

Take care, Everyone.
Margaret

#7 Sweet

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Posted 16 September 2009 - 03:29 PM

Hi Raecheal,

Welcome to the Forums Love! I'm really glad you've joined us. I'm so sorry however it's due to the ill health of your daughter. You've received some great advice so far. I hope that it is helpful to you.

Know that you are among those who understand and are going through the same stuff.

Looking forward to knowing you better. Keep us posted.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#8 sandra

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Posted 17 September 2009 - 06:57 AM

I truly feel for you, rest assured, she will be okay until you find a " Medical Management Plan" for her. Please contact me for further direct contact for J. H. Scleroderma center "Dr. Frerick Wigley" I am a patient of his.

Stay Calm.

#9 Jeannie McClelland

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Posted 17 September 2009 - 11:39 AM

Hi Raecheal,

I can't add much to what the others are suggesting, but I did want to welcome you and offer you my heartfelt sympathy. It always seems so much harder to cope with things that affect our children than the things we go through ourselves. Please take care of yourself, as well as your daughter.

If you live in an area large enough to have a Children's Hospital, there might also be a support group for parents of children with chronic illness, maybe through the hospital itself. They can be a good resource, not just for you, but for your daughter. Also, hospitals often can offer some help from a pyschological or socialogical standpoint directly to the kids themselves. Another thought is that kids really are uncanny about picking up on their parents' emotions. If your daughter realizes you are really worried or upset, it might frighten her unnecessarily.

I'm far from being an expert in child-rearing but in my experience, it's best to keep things normal and on an even keel. You could always ask your daughter's school to let you know if they see an upsurge in colds/flu and then check with her doctor about keeping her home for a few days. You could also help her by teaching her the things we all try to do to try to avoid Jeremy's (germs). We made things like hand-washing a game: soap up and sing two verses of "Old McDonald had a farm. . ." and teaching the proper way to sneeze (into your elbow) was "if you have a big sneeze coming, use it to blow the lint out of your elbow - it looks awfully dusty to me."

I hope everything works out well for your little darlin'.

Warm hugs to both of you and my warmest wishes,
Jeannie McClelland
(Retired) ISN Director of Support Services
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#10 Shelley Ensz

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Posted 06 October 2009 - 05:45 AM

Raecheal, have you had the appointment for your daughter with a scleroderma expert yet? Or, is it coming up any time soon? I'm eager to hear how she is doing.
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.

#11 epasen

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Posted 06 October 2009 - 06:58 AM

Hello Raecheal,

I'm a girl who was diagnosed when I was about your daughter's age. That was more than 13 years ago, and I've been being able to continue my life almost normally. On the matter of health, there have been few ups and downs along the way, but it has grown me much stronger and more mature.

You and your baby are in my thoughts, I'm wishing you all the best and hoping that everything will be fine in the future. If you have any questions or fear, this is the right address.

Warm hugs,
Emmi

#12 Gidget

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Posted 06 October 2009 - 10:34 AM

Raechel,

I am so sorry to hear about your daughter. You must be frantic! My suggestion is that you get with a sclero specialist as soon as possible. There are only a handful throughout the country but I think they are all very good. My personal experience has been positive with Wigley out of Johns Hopkins; Medsger out of Pittsburgh and Varga out of Northwestern, Chicago. You can also try Spiera out of NYC if that is closer. In any event, what you will want is to develop a team of doctors -- you need the sclero expert; you need a local rheumatologist to support the sclero expert; and you need your local pediatrician to also be part of the team. Depending on your daughters issues, you will need to add a local Gastric guy or a local Lung doctor -- probably ones that do peds. Basically, you will need a local team that understands the sclero issue. Do not be afraid to seek out the best medical attention that you can get. A great team of doctors will make all the difference in the world. Based on your posting, I think you need to move away from the doctor that is saying weight is the problem. Yes, the weight is the problem if your daughters issue is her lungs but it is how you eat that can help/hurt the gastro issues -- not her weight. I always feel that doctors that right away focus on weight just are not that sharp. Now, a lung doctor told me that you want to be as fit as possible as the fitter your body is, the better it utilizes oxygen -- now that makes sense -- not you need to lose weight. Good luck.

Gidget.