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Daughter with New Diagnosis

juvenile scleroderma Raynauds induration

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#1 madisonsmom

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Posted 05 October 2012 - 04:55 PM

Hi Everyone,

After 1 1/2 years of Raynaud's as well as dark and light pigment changes on her back and legs, and being followed by rheumatology for 1 year with a diagnosis of juvenile idiopathic arthritis; my 12 (almost 13) year old daughter was diagnosed with juvenile scleroderma today.

The diagnosis is not a shock to me. I had suspected it all along because of her symptoms, etc. Her doctor had said "possible scleroderma", but usually seemed as though it was not likely. Today he said "this was not the news I wanted to give you, but it has become clear that she does have scleroderma".

If I had heard the news at any of the earlier appointments I think I would have been prepared, but today...I just wasn't.

From all that I have read, and the best I can figure out, juvenile scleroderma does not normally have as severe of an outcome as adult onset. I asked her doctor about what "type" she has because her skin color changes are on her back and legs, and today the induration that he and the nurse practitioner noticed were on both lower legs from the knees down to the toes.

Again, from what I have read...she would fit the category of "diffuse systemic". Her doctor did agree with the "diffuse" but said that kids don't normally have "systemic". I know from reading the forum guidelines that no one can give "medical advice" but I am really confused about the classifications.

I also took her at the onset of her symptoms over a year ago to a pulmonologist, gastroenterologist, and cardiologist. She did (and still does) poor on her lung function tests, although the DLCO was ok. So right now she has the diagnosis of asthma. Her GI did a biopsy that showed inflamation of her stomach and small intestines and she was put on a med to help with that. Her echo at cardiology was normal.

How do I know when to be concerned about lungs and GI possibly being part of scleroderma? Does the fact that her skin areas that are affected started on her trunk and is now on both lower legs mean anything when it comes to determining what "type" of scleroderma she has? Oh, and she was also diagnosed today with scoliosis. I didn't even think about it until after we left, but I am wondering if it could be related to the large area of scleroderma on her trunk...even though the skin is not very tight yet, could it be preventing her back from growing correctly during these fast growth spurts??

Sorry so much - a lot on my mind tonight.

#2 judyt

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Posted 05 October 2012 - 05:31 PM

Hi Madisonsmom,

First of all welcome to the Forum but what a shame it has to be because of your daughter's illness. However, you will get lots of support and information here and I hope it will be of help to you.

You don't say where you live, but from the 'mom' part of your name I am assuming you are in the US.

First of all, have you been able to consult a Scleroderma specialist? Not every Rheumatologist has the depth of knowledge to give you complete advice so we do recomment that you get the best help you can. Not every specialist deals with juveniles either so that is another thing to think about. In my case I live in New Zealand and only now are we getting around to having one medical man in the whole country who has a special interest in Scleroderma.

From my own experience, I suspect that I started showing signs of the disease when I was about 11 or 12 (nobody still around to confirm or deny that just my memory) and then I know for sure that I started with Raynauds when I was 22. If there had been the knowledge available when I was young and I had a diagnosis I suspect that the organ damage I am living with now could have been lessened. I have no skin involvement so once again there were few outward signs that anything was wrong, until 2003 when I got very sick and was hospitalised. So in your case I would suggest that you keep right on top of getting help and advice and medications if possible to try to lessen the damage this disease can cause.

I know it will be a big shock for you since your daughter is so young and we would all love our kids to do well and be healthy for as long as possible, but if you can put aside the disappointment and focus on what you need to do to help her, that would be the best gift you can give her right now.

Keep in touch, ask as many questions as you like and we will do our best to support you.

Best wishes
JudyT

#3 Margaret

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Posted 05 October 2012 - 07:05 PM

Hi Madisonsmom ,

I learned about Scleroderma when my son was 18 years old and just starting his senior year. He complained that his food was getting stuck, which led the Gastro doctor to order a swallowing test. Turns out his esophagus wasn't working after the first 2" or so. He ordered a mess of blood work and it came back + for scleroderma (ANA + speckled pattern, anti-RNA Polymerase 1/111) He also had the chest tightening (Chostrocondritis?), a 20 # wt loss, over whelming fatigue, autoimmune induced depression, but no skin issues/Raynaud's --- so they went with UCTD and not sine scleroderma. After 6 months, they started him on Plaquenil and he stabalized for a while. He has since developed Raynaud's, hypothyroidism, and SICCA (dry eyes/mouth) but no skin issues. His Endocrinologist is currently working him up for Adrenal insufficiency...possibly secondary to the UCTD. He's 24 years old now and there have been many ups and downs.....just go with your gut feeling and push for answers when something seems "not right", His biggest issue has always been the fatigue....."so tired, Mom".

Take care, Everyone.
Margaret
Mom to Gareth, 24 years old, DS/ASD/OCD

#4 madisonsmom

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Posted 05 October 2012 - 08:30 PM

Thanks Judy. Yes, I am in the US... in Florida. I like the advice to find a doctor that specializes in scleroderma. I am going to begin that process immediately. I think that would help a lot! I also forgot to mention that she is on methotrexate, they increased her dose today. She also takes an NSAID for arthritis. She takes some meds for her asthma (lung function) and GI symptoms too. I am trying to stay on top of her symptoms, even if we don't know if they are related to scleroderma or not. I don't want to wait years for it to show up as systemic, etc. But it is all so frustrating to be such a guessing game. Especially when it is your child. I am so glad I found this site...I know it is going to be so helpful with information, as well as just being able to hear from people going through similar life events. :thank-you-2:

#5 miocean

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Posted 05 October 2012 - 09:06 PM

Dear madisonsmom,
I asked my scleroderma specialist once if there were any children she treated and she told me juvenile scleroderma is very rare, so not only do you have a child with a rare disease that is difficult to diagnose and affects everyone differently, but being a child with it is even more rare. Finding a scleroderma specialist is therefore very important.

Scleroderma specialists are listed here. There is one in South Carolina for juvenile scleroderma. I know it is difficult to travel long distances to centers, but a consultation, evaluation, and a contact person who is a specialist will be invaluable as time goes on. I would suggest you make a list that contains the information you have now and the questions you have and start calling centers. Once you find a center, make it a vacation if you can, with a "fun" part of the entire experience.

You sound like you are already a great advocate for your daughter. If there is anyone on this forum who can help you get the best help for your child it is Margaret. She has been very aggressive in helping her son Gareth.

By the way:

:emoticon-hug: Hi Gareth! :emoticon-hug:

I am so sorry that you and madison have to go through all of this. Be encouraged that progress is being made with treatment of the symptoms of this disease, keep you hopes high, and remember that many of the things you read on the internet are not accurate. This forum has been my inspiration and the medical pages here are the best source of information. Please keep us posted on your progress and come here for help and answers. And..

:emoticon-hug: Hi Madison! :emoticon-hug:


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#6 Margaret

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Posted 06 October 2012 - 09:28 AM

Miocean ,

You sure brought the big smile to Gareth's face this morning!!! :you-rock: He thought that was neat!!! Thanks for the positive support, too. That brought a big smile on my face!!! :emoticons-thankyou:

Take care, Everyone.
Margaret

#7 Joelf

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Posted 06 October 2012 - 09:46 AM

Hi Madisonsmom,

Welcome to these forums!

I'm very sorry to hear that your daughter has been recently diagnosed with Juvenile Scleroderma and I can understand how worried and alarmed you must feel. Miocean has given you a link to our page on Scleroderma experts and I would agree with both her and Judy about the importance of consulting a junior Scleroderma specialist, as sadly many rheumatologists do not have the knowledge and expertise to deal with such an unusual and complex disease. I've also included a link to our medical page on Prognosis: Juvenile Systemic Sclerosis (Diffuse and Limited) to give you some more information. I know it can be very confusing; not less because Scleroderma affects everyone very differently and it is a difficult disease to diagnose, which can be frustrating when you're looking for answers.

The good thing is that you've found our forums and joined our community and so now you and Madison are no longer struggling alone and you will find a wealth of help and support here.

Please do keep posting and keep us up to date with Madison's symptoms and treatment.

:emoticons-group-hug:

Kind regards,

Jo Frowde
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#8 madisonsmom

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Posted 06 October 2012 - 10:16 AM

Thanks everyone! I look forward to getting to know you all better.

Miocean - you made Madi smile too... she jokingly waved at the computer and said "hi" She keeps looking over my shoulder at the computer to see what I am reading/writing, so that was a nice welcome surprise for her. :yes:

Margaret - I'm sorry that our connection has to be an illness that our children have...but I am very glad to have another "mom" to talk to. Doctors wisdom is important, but they don't always understand a mom's intuition, observations, or the emotions that go along with it all.

Thanks for the links to the specialists...I will check out the one in South Carolina as well as look around for others. We homeschool our kids, so maybe we can make a trip to South Carolina - never been there (except passing through).

Thanks again!

#9 Amanda Thorpe

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Posted 07 October 2012 - 07:44 AM

Hello Madisonsmom

Yes, per literature juvenile scleroderma is generally considered, in medical terms, a less severe disease than adult scleroderma. I say in medical terms because the emotional impact on juvenile and adult can be just as profound.

Shortness of breath is the telltale symptom for heart problems and/or lung problems. When my heart failure began my main symptom was shortness of breath. They also say fatigue can be a symptom of both but you usually get that with scleroderma anyway so kinda hard to tell!

Apart from what you're doing there's not much more you, as a parent, can do other than get a scleroderma expert on board.

Take care and keep posting.
Amanda Thorpe
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#10 Sweet

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Posted 08 October 2012 - 10:43 AM

Hi Madisonsmom, and Madison!

Let me join in here and give you a big warm welcome!!! You've come to the right place for ACCURATE information, support from people who "get it" and for great friendship. Welcome to our family!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#11 madisonsmom

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Posted 09 October 2012 - 03:36 PM

I am feeling better tonight after talking to Madi's pulmonologist. I have used this pediatric pulmonologist office for the past 7 years with other kids. We did medical foster care for 15 years. We no longer do foster care, but I now have 2 kids of my own that see this doctor on a regular basis. I was anxious all weekend to hear from her, I knew she was out of the office until today.

She assured me that from a "lung" viewpoint that the symptoms Madi has now are strictly asthma, but that we will need to keep a closer eye on her now for many reasons including mainly the diagnosis of scleroderma and what can go with it.

She also gave me what I think I really needed from the rheumatologist last Friday...some sort of idea of what to expect, a plan, something to go on. She said that I need to take Madison to see all of the specialists for organs that can be involved once a year for an evaluation for any changes. (So far Madi has seen pulmonology, GI, and cardiology. The only other one I know of that I will need to schedule is nephrology. Any info as to specialists is greatly appreciated!! ) She did order a CT scan of her lungs today, but I will have to get that coordinated with the hospital. She has already had a full lung function test, so it will not need to be repeated until 6 months from now. We already had an appointment scheduled with GI for Thursday, so I will discuss all of this with that doctor then, and cardiology is right next door to GI, so I will go by there and see about making another follow up appointment at the 1 year mark.

The pulmonologist also said that they have several teenagers that they treat at their clinic with scleroderma, and she mentioned the possibility of getting Madi together with them sometime. She did say that all of them are further along in the disease process, and I might think about that before introducing Madi to them... to make sure Madison is ready for it. She said that although she couldn't make any promises to me because it is a disease that has many unknowns...that based on what she has seen with her other patients, that Madi's does seem to be progressing slowly and she wouldn't expect any lung involvement for several years (if at all...but kind of sounded like she would expect it at some point).

Thank you all so much for the information and for the kind and encouraging words! It really has helped SO much, knowing that I have a place to turn to where people have walked this road before me, and I can come to you all with questions or just to vent.

Thanks!
:emoticons-line-dance:

#12 Joelf

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Posted 10 October 2012 - 05:18 AM

Hi Madisonsmom and Madison,

I'm so pleased to hear that you had a successful appointment with the pulmonologist and that you're feeling happier about Madison's prognosis. It's absolutely true; Scleroderma is such a bizarre illness and it really is impossible to foretell how it will pan out in the future.

I'm hoping that Madison will stablise and be able to enjoy her life fully despite this disease.

Best wishes to you both,

Jo Frowde
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#13 Amanda Thorpe

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Posted 10 October 2012 - 01:26 PM

Hello Madisonsmom

Yep, those lung function tests and ECHO's, at least, should be done every year for at least the first 5 years, well that's for adults anyways, I don't know if they monitor kids more or less frequently.

As Jo's said, scleroderma is so bizarre that no one person is the same as another, it's like having your own, tailor made disease.

Take care.
Amanda Thorpe
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#14 vayokley

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Posted 19 February 2013 - 09:02 PM

Hello,


Today I just found out that my 12 year old daughter was diagnosed with scleroderma and they said that her SSB antibody also came back as Sjogren's too, so now I'm really worried about her.

 

The spots came up her her back and legs about 3 years ago and I have taken her to different doctors.  No one would ever give me any answers. When she was 6 years old she had her gallbladder taken out, then they noticed hat she had fibrosis on her liver so they had a liver specialist come in and check her out which she said she was fine. Then she started having trouble with inflammation in her stomach, they said she had gastritis. Then she started having rectal bleeding.  I took her back and they said it was normal (no its not normal for anyone to have rectal bleeding).  She has acid reflux and now she keeps a cough all the time.

 

Can someone give me some advise?  Oh her endocrinologist said her pancreas is producing to much insulin and now has vitamin D deficiency. She has growth hormone deficiency and hypothyriodism. Please help.

 

Thanks,

 

Virginia



#15 Shelley Ensz

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Posted 19 February 2013 - 09:29 PM

Hi Virginia,

 

Welcome to Sclero Forums!  I'm sorry that your daughter is sick and I send my best wishes to both of you.

 

Your daughter's health situation sounds very complex.  What I'd most highly recommend is that you get her to see an expert in juvenile scleroderma.  They are few and far between.  But they could help sort out what type of scleroderma she has and also help devise a reasonable treatment plan. 

 

If you browse through our ISN Guide to Scleroderma Experts, you'll see we note whether or not the center treats juveniles and what type of insurance they take, etc. It can take a few months, sometimes longer, to get in for a first visit so it is something you should start planning now.

 

I am so very glad you found us.  I am sure others will be greeting you and offering information as well.  Here are some warm welcoming hugs for you, and your daughter.

 

:emoticons-group-hug:


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.

#16 Joelf

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Posted 19 February 2013 - 11:35 PM

Hi Virginia,

 

Welcome to these forums!

 

I'm so sorry to read about your daughter's ill health; her problems do sound very complicated and it must be very worrying for you.

 

I must echo Shelley's advice and suggest that if possible you consult a juvenile Scleroderma expert, as sadly many rheumatologists do not have the knowledge and expertise to deal with this complex disease.

 

I do hope that you will be able to get suitable treatment for her and please do keep posting and let us now how you and your daughter are faring.

 

:emoticons-group-hug:

 

Kind regards,


Jo Frowde
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#17 Shelley Ensz

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Posted 20 February 2013 - 10:29 AM

Hi Virginia,

 

I am sure that right at the moment you must be totally overwhelmed with questions and concerns about your daughter's health. When things settle down a bit you may want to find more information on it, so I'm including several links here for you to save until you feel up to it.

 

There are many different Types of Scleroderma.  When people have "spots" that usually means they are referring to Morphea Scleroderma, which is the type of scleroderma that is never fatal, but people with morphea sometimes have symptoms outside of just their skin involvement.

 

Morphea Treatments include UVA1 Phototherapy which is now recommended as the first line treatment.  It is similar to a tanning booth and the treatments are entirely painless and take less than a minute or two.

 

If your daughter has morphea along with Raynaud's phenomenon and anticentromere antibodies, then she is at risk for developing systemic scleroderma.  Read more about that in Conditions Associated with Morphea.

 

It is very common for people with morphea to have a variety of antibodies.  That is because morphea is an autoimmune disease albeit a usually mild one.  Many healthy people have antibodies that never develop into anything.  So when antibodies occur by themselves, without any symptoms typically associated with them, they are usually nothing to worry about. 

 

It is when they occur along with associated symptoms that they are taken more seriously.  So, a person can have Sjogren's antibodies without having or developing Sjogren's; what matters here, above and beyond anything, is whether or not they have verifiable symptoms of Sjogren's, such as very dry eyes and dry mouth.

 

Antibodies can also come and go, so it is not unusual to have them on one test, only to have them disappear on the next, and possibly to even have different ones on the next round of testing.  That can be terribly confusing, upsetting and distracting when too much emphasis is placed on them, and it's another reason why symptoms -- or the lack of them -- win the day, in the long run.  It's also something for you to be aware of now as you are likely to encounter a very confusing assortment of information going forward.

 

I'm not saying what type of scleroderma she has or whether or not she has Sjogren's, etc.  I am not a doctor and I have no medical training at all. But if you study this info you will have a much better idea of what questions to ask her doctors, both now and in the future.  And of course, we are here to try to answer your basic questions and to offer support and encouragement.  I'm sending extra warm hugs your way!

 

:emoticons-group-hug:


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.

#18 Amanda Thorpe

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Posted 21 February 2013 - 04:33 PM

Hello Virginia

 

Welcome to the forums but I am sorry your daughter has been and is still ill, I can't imgine what it's like for you. I hope you find a scleroderma specialist for your daughter,a treatment regime and that she starts feeling better soon.

 

Take care.


Amanda Thorpe
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#19 judyt

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Posted 21 February 2013 - 06:24 PM

Hello Virginia,

 

Welcome from the upside down side of the world, we might be awake at different times of the day from you but rest assured that the same things happen everywhere.  Sorry to hear that your daughter is unwel land has so many unusual things happening.

 

I notice that you say she has a constant cough, that in my experience anyway, can be caused by Sjogren's.   Having a dry mouth all the time means that my throat gets dry too and then it starts to tickle and I have to cough.   It doesn't help but I have to do it.   I will keep coughing until I have a mouthful of water to ease the tickle.   Some times I have used sugar free gum to chew but it is not becoming for a lady of my age to be seen chewing all the time so I tend to keep a sippy bottle of water with me.   The other thing which can cause a constant cough as you probably know is low haemoglobin count.   You say she has been having some bleeding and I wonder if a proper investigation of her iron stores has been done.

 

It is such a worry to have a child who is constantly unwell and our hearts go out to you.

Best wishes

Judyt



#20 Margaret

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Posted 22 February 2013 - 05:17 PM

Hi Virginia,

 

Welcome to the forums and sorry to hear about your daughter's diagnosis at such a young age.  My son started down this autoimmune nightmare at the age of 18.  He's 24 now and I would have to say that the fatigue and pain are the constant stressful issues for both of us.  He was put on Plaquenil 6 months after diagnosis and his esophageal dysmotility and restrictive lung issues eased up. 

 

Take care, Everyone.

 

Margaret







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