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Coping With Juvenile Systemic Sclerosis


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#1 virg121

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Posted 14 January 2008 - 09:22 AM

Hello,
I'm a newby to this forum. I have a beautiful 9 year old daughter that has just been diagnosed with Systemic Sclerosis. The past few months have been a bit difficult trying to deal with all the new stuff that comes with this ugly disease!
I've been trying to find support groups so that my daughter and I can meet with other people with this disease, but have had no luck!
I just wanted to know if there are any parents out there with young kids with this disease. It would really help to talk to someone with some kind of knowledge and experience!

My daughter is currently taking methotrexate and doctor wants to switch her to another med that won't affect her kidney as much but insurance won't cover it, and this new med costs a few thousand $$ a month...

This is all so overwhelming!!!

Virginia

#2 Sweet

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Posted 14 January 2008 - 11:17 AM

Hi Virginia,

Welcome to the sclero forums. I'm truly sorry you found us due to your daughters diagnosis.

There are a few on the forums that have children with scleroderma, so I'm sure you will hear from them.

Again welcome.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#3 Margaret

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Posted 14 January 2008 - 01:32 PM

Hi Virginia ,

I have a 19 years old son who was diagnosed 15 months ago with sineScleroderma. Then, they decided to call it UCTD. He's been on Plaquenil since last June and is much better now. He had all internal problems and they seem to have cleared up for now. He had esophageal dismotility, mouth problems, restrictive lung disease, almost no voice, and MAJOR fatigue issues. I know what you mean, though, because for the first 8 months it was so hard watching him suffer. This group has been a life saver for me.

Take care, Everyone.
Margaret

#4 Jordan's Mommy

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Posted 14 January 2008 - 03:48 PM

Hi Virginia,

I have a 7 year old daughter who was diagnosed at 5 with localized linear scleroderma. It is restricted to her entire left arm, and it has not spread in the past two years. Like Margaret's son, she is on daily Plaquenil. She has previously been on prednisone and naproxen, but has been off both of those for 2 and 1 year respectively. Her skin has thinned out considerably on her left arm, but other than that, she hasn't had any problems related to her scleroderma. Having systemic scleroderma is very different from the localized form, as I'm sure you have discovered, but you will find great support on this website for all kinds of scleroderma. You can also check out the juvenile scleroderma network for more information. They are based in Southern California (where I live). Where are you located?

Jennifer

#5 janey

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Posted 14 January 2008 - 03:59 PM

Virginia,
Welcome to the forums! I'm sorry to read that your daughter has scleroderma. I'm glad two of our members who have children with sclero have already contacted you. It's good to be able to talk to people going through the same thing you are. We do have a section in Juvenile Scleroderma. It provides several links to juvenile scleroderma sites as well as links to specialists worldwide. There is also a section on various research that has been done with juveniles. I think you'll find this one quite uplifting.

Systemic sclerosis in childhood: clinical and immunologic features of 153 patients in an international database. "Juvenile SSc appears to be less severe than in adults..."

Again welcome!

Big Hugs to you and your daughter,
Janey Willis
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(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
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International Scleroderma Network (ISN)

#6 virg121

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Posted 15 January 2008 - 07:30 AM

Hi Jennifer,
Thank you so much for your message! It truly means a lot. My baby (as she will always be) has a hard time with needles and doctors, she is terribly afraid of them, and unfortunately this is a big part of this disease. Did you ever experience anything like this with your daughter?? At the moment we are going to Childrens Hospital in Los Angeles, we live in Oxnard, California so its about an hour drive Southbound. Where do you ladies live?
This is all fairly new to us, we are still trying to go through all of the tests and exams needed to find out exactly where we are at with this ugly disease. She had her first cat scan last week and everything was ok with it. We are still awaiting auth. from insurance to do swallowing studies and pulmonary tests.
The doctor wants to switch her off the methotrexate to a new med but her insurance does not cover it, so they suggested we cancel her insurance and go medical and then she will be eligible for CCS. Are you familiar with CCS??

Virginia

#7 Jordan's Mommy

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Posted 15 January 2008 - 11:18 AM

Hi Virginia,

I am in Orange County, and we live about a mile from Children's Hospital Orange County. Jordan's scleroderma made itself known when she developed some discoloration on her left shoulder. She is very fair, so I thought she had the lingering effects of a suburn. About a week before she turned 5, the discoloration shot down her entire arm and into her left hand literally overnight. Her pediatrician had her x-rayed, and referred her to a dermatologist. He thought it was a late onset birthmark, but I wanted a 2nd opinion. The 2nd dermatologist diagnosed it correctly and referred me to a pediatric dermatologist about 10 minutes away. My insurance refused to reimburse me to see him (he only takes cash) and his office visits are $300 (well worth it by the way!) The sent me to an infectious disease doctor instead who said he couldn't help us because she doesn't have an infectious disease! We finally were referred to a rheumatologist at CHOC, who had Jordan undergo a high resolution ultrasound, a pulmonary lung test, an EKG, lots of blood work, sessions with a physical therapist, and an MRI. We opted not to have the MRI because they wanted to completely put her under for it and inject contrast dye into her body. Her rheumatologist recommended methotrexate, but after reading the pamphlets and risks, as well as speaking to my brother in law (who is a pediatric trauma surgeon in Las Vegas), we opted for the Plaquenil instead. She has responded pretty well to the Plaquenil, but her rheumatologist still swears by the safety of methotrexate. My daughter hates needles, and having to hold her down for repeated blood tests was very painful for my husband and myself. You mentioned that your insurance won't cover a new medication, but I suggest you become the biggest thorn in your insurance's side until they relent! My pediatrician was great when it came to dealing with my medical group, and if yours can show a need for this new medication, or if you can find a patient advocate, you should be able to get it approved with some pushing on your part.

DON'T GIVE UP OR GET DISCOURAGED--THIS IS YOUR BABY!!
Please email me any time.

Jennifer

#8 Margaret

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Posted 15 January 2008 - 12:43 PM

Virginia and Jennifer ,

I think that is so great that the two of you are fairly close by each other!!! Strange, though, we live in Brea, Ca., for 3 years. That was 10 years ago. Wonder what it is with that area?!?!?

Take care, Everyone.
Margaret

#9 jefa

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Posted 15 January 2008 - 03:56 PM

Hi, Virginia. Welcome to our ISN Sclero Forums family. I am so sorry to hear that your daughter has been diagnosed with scleroderma but glad you have found us. I see that you and Jordan's Mommy have already connected. I am sure you will learn much from someone who is going through some of the same things. We have a couple of other mothers and also some teens who are patients as members. Please let us know if there is anything we can help you with. I include a link to our Types of Scleroderma: Overview page which includes a section on juvenile scleroderma.
Warm wishes,
Jefa

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#10 epasen

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Posted 16 January 2008 - 07:41 AM

Hi Virginia,
I was diagnosed with linearic form of scleroderma in 1996, when I was only 6 years old, so I've grown up with scleroderma since I was kid. I'm turning 18 in march. Scleroderma has taught me a lot and it has brought some difficulties and limited my life but not really too much.. Right kind of attitude towards life is the best you're daughter can use against the difficulties that sclero brings to her, compared to other kids. :)
Take care,
Emmi

#11 Jordan's Mommy

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Posted 20 January 2008 - 09:31 AM

In Sunday's paper, there is a fairly informative article about what to do, or whom to contact, if you need help getting a medication or procedure approved that has previously been denied. It is in the magazine that begins with a "P" that comes each week in most major papers. It's a start to getting your daughter's new medication covered.

Jennifer

#12 dawn

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Posted 25 April 2008 - 07:25 AM

Hello,
Sorry for the delay... Virginia I hope you get my message. My daughter is 11, she started with this at age 4 but it wasn't diagnosed until she was 6. At this point that all seems like ages and ages ago. We had to fight the pedi for answers and the insurance company to cover labs, procedures, speciality doctors (etc) Right off the bat they would deny anything and everything. I would call talk to several of their agents and they would agree to review and evenually they would correct - the whole process is tiring and very mentally draining. Still to this day the insurance company uses this practice, just not to the same extent. My husband teases me, he asks "who you call'n today? what part of the disease are you worrying today?"... You have to laugh to keep from crying. I tell him that I don't multi task at worrying, I can only worry about one thing at a time... I completely understand what your thinking and what your going through. Ultimitely the first priority is getting through the present day, getting your daughter the doctors and medicines she needs, trying to ensure your daughter has a childhood with the experiences that all 9 year olds should have and deserve. Then if that isn't enough to consider and worry about, in the back of your mind you think about all the future obsicles your daughter has to overcome as an adult. I don't have the answers, I like you are in the middle of this 'rollercoaster ride' and I am not in control. I guess that is the best thing I told myself, I am not in control and at best I can only make decisions with the knowledge I have at the present time (hindsight is 20/20). She is going through health problems right now, our daughter's immune system is like dominoes just one thing after another. Nothing seems easy. Try to enjoy and treasure your family's happy moments and Laugh...

I'm here if you need anything.
Peace, Dawn