Posted 07 February 2009 - 06:08 PM
It is nice to see so many recognizable names still posting and chatting away. I hope you and your loved ones are doing well.
Jordan is still an amazing 8 year old who is refusing to let scleroderma get in the way. She loves school, enjoys art, piano, and archery lessons, and has more friends than she knows what to do with.
Her rheumatologist is still treating her scleroderma with just Plaquenil (3 years now), but I am still looking for new treatment ideas. We went to dermatologist #4 last week, and that was a total waste. He was so insensitive to my little girl sitting in his office, talking about how rare this disease is, that there is no cure, and that I should know that PUVA can cause skin cancer....blah blah blah. I was so angry when I left his office. I can only imagine how Jordi felt.
We are going through an independent medical review (IMR) with the state of California now because my insurance denied her phototherapy treatments that were recommended by a great (but out-of-network, cash only pediatric dermatololgist). I should have a response back from them within the next few weeks. Is there anyone on here who has had uva or uvb treatment with good results?
I would love to hear from you! Happy belated new year!
Posted 07 February 2009 - 06:50 PM
So glad to see you posting again! Sorry for the problems you've been having but glad to hear that things are under control. Life gets to us all sometimes. Great to hear that Jordi is doing well. What an amazing little girl!
Have you seen our section on phototherapy? Just in case you haven't, here's a link. Maybe this will give some information. I have no experience to share.
Again, glad to have you back. We missed you! Please keep us updated on those treatments for Jordi.
Big Hugs to you both,
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)
Posted 07 February 2009 - 09:01 PM
it's good to hear from you again. You know, I was only six when I was diagnosed with this disease. I think that growing up with it was actually a blessing. It made me a lil stronger and I think it was easier to grow to that consciousness that I have scleroderma a lil by lil, than if it had attacked me straight at face when I was already an adult and understood world better. I didn't understand to worry or anything, I lived my life like any other kid. When I finally started to understand these things better, sclero had already been part of me for so long that it was just normal me. I can not even imagine my life without sclero now, since I really can not even remember how it was before it.
I hope Jordan's condition will remind this stable and that she'll keep that positive attitude. It's the best thing you can do with this disease: stay positive. It gets you through so many things and it lightens your own day and everyone else's around you too.
Posted 08 February 2009 - 02:56 AM
I am sorry to hear that you went through your own personal struggle......I was wondering how you and Jordi were doing. I hope you continue your uphill climb, and that with spring coming, all will be OK.
Take care, Everyone.
Posted 08 February 2009 - 08:33 AM
Posted 08 February 2009 - 12:31 PM
I am so glad to see you back and that you are feeling better!
As for Jordan...she's so lucky to have a mom who is such a great health advocate on her behalf.
May you be successful in cutting through the tape at the insurance company.
Hopefully, you can get the assistance you need, via a written explanation fom the pediatric doctor who is wanting these treatments for Jordan.
Please keep us posted, Jennifer?
Posted 08 February 2009 - 06:31 PM
Welcome back. Jordon sounds like an amazing girl. It is to bad some doctors don't act appropriately or professionally but you have found some that are professional and that is half the battle. Hope you will be able to get the treatment that is needed for your daughter and will keep you and Jordan in my thoughts.
With gentle thoughts,
Posted 09 February 2009 - 12:57 PM