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Jordan's Mommy

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About Jordan's Mommy

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  1. For the first time in about 7 months, I finally logged back on to sclero.org. I basically had a total emotional/physical/mental breakdown, and shut out the world for several months. Thank goodness for my husband, kids, friends, and coworkers who have stuck by me while I have crawled out of the biggest hole in my life. 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! Jennifer
  2. Hi all, My daughter's rheumatologist called me at home yesteday to let me know she had spoken with my daughter's dermatologist (we haven't seen him in a year) to get his opinion on light therapy and linear morphea/scleroderma. He said he has patients as young as 6 receiving the light therapy with positive results. My daughter will be 8 in September, so I have a few questions for those of you who are getting this form of treatment. I hope you can answer! 1. What kind of light therapy are you getting? 2. What is it supposed to do? 3. How long does each session take? 4. How did you get it covered by your insurance? (the dermatologist only takes cash--no insurance) 5.Do any of you have a take home device to do it yourself? 6. Any other words of advice or suggestions? Thanks! Jennifer
  3. Hi Jess, My 7 year old was diagnosed with linear scleroderma when she was 5. It is only on her left arm, but it is from her shoulder to her fingertip. I find myself analyzing her skin at least once a week, trying to figure out if I see anything new on her body. Every little spot, bump, cut, or bruise is enough to send me for a loop! She was also on Clobetasol and Dovonex for a while, but she is now just on Plaquenil. Her arm gets much darker in the summer when she is exposed to a lot of sun--even with lots of sunscreen on. You might want to talk to your doctor about Plaquenil, as it is *supposed* to halt the progression of scleroderma/morphea. Please let me know how your results from phototherapy go--my daughter's rheumatologist has asked if anyone I know has tried it--I know there are a few people on this site who have tried it. Take care, Jennifer
  4. hI Carolyn, About 6 months before my daughter (she's now 7 1/2) was diagnosed with linear slceroderma, she had to have 3 of her baby molars capped because they did not form correctly (only the perimeter of her teeth formed--no middle). I have always felt that this procedure, which was done under anesthesia, may have triggered her illness. She began losing her baby teeth about a month after she had turned 5, and has already lost 8 to this day. Her permanent teeth have come in without any problems though. My other daughter, who will be 5 in July, has already lost 2 teeth, and the permanents are already growing in. take care, jennifer
  5. Hi All, So I'm a little bothered with a phone call I received from someone at Children's Hospital where Jordan is a patient. Maybe I'm out of line--please be honest!... Jordan had her labs done about 10 days ago. Having several vials of blood drawn from a 7 year old is never pleasant to begin with, and waiting for results is no picnic either. After 7 days, I called to get her results--no one called back. I called again the following day and left another message. The lady called back later that day and told me that Jordan's rheumatologist looked at her labs, and everything was fine. "And by the way, we usually don't discuss lab results over the phone--you can discuss them with your doctor at the next appointment." Well, that had my blood boiling!! I told her that Jordan's appointments are 4 months apart, that we are going to see a specialist in New York (we are in So Cal) and that I needed to know in order to present a clear picture to the sclero specialist. We all know doctors can make mistakes, overlook important information, etc. Calling for the results is my way as a parent to make sure there is no change in her disease, and making sure that her results have actually been received and reviewed by the appropriate doctor. Am I asking too much? Is a little peace of mind that extravagant? Anyway--Have a great holiday--we leave for New York on Sunday. I'm excited and nervous. Wish us luck! jennifer
  6. Hi Jackie, My 7 year old has been on Plaquenil for 2 1/2 years now. She never complained of fatigue or pain before she started taking it, so I just figure she's on it to halt the progression of her linear scleroderma. Her rheumatologist did suggest taking her off of the Plaquenil at her last appointment in January, but I am terrified that she will regress OR progress in her illness. We are going to a scleroderma specialist in New York in 2 weeks (we are in southern California), and I plan on getting his opinion before we decide to take her off of it. I do know that other people on this site have not done so well when they went off of their Plaquenil, but we know this crazy illness affects everyone differently. Good luck! Jennifer
  7. Dear Linda, I am so sorry for your loss. Pets really do become family members. My siblings and I joke that my parents are going to leave their estate to their real children---aka their dogs! I also thought your name was Tru....Margaret, I'm right there with you! Linda, I will keep you and Truman in my thoughts. Jennifer
  8. My 7 year old was diagnosed with linear morphea/localized scleroderma about 2 1/2 years ago. Hers started out with some small unusual spots/patches on her left shoulder --it looked like she had had a sunburn that had turned into a dark tan on her very fair skin. On her 5th birthday (about a month after the spots first appeared) the discoloration shot down her entire left arm and hand overnight, taking on a bruised appearance. Morphea can appear as scattered oval patches or spots, or be linear, as is my daughter's. The discoloration has not gone away and her morphea has not spread, but her left arm has lost a lot of the fat all of the way down. Hope this helps. Jennifer
  9. Thanks for all of your good wishes and supportive messages. I am actually starting to look forward to this trip! We have a hotel on reservation right next to Madison Square Garden and Penn Station, and we bought tickets to see a new Broadway musical that my daughter can't wait to see (it is advertised heavily on a TV show for kids). I actually wish we could stay longer, but I'll be leaving my hubby and 4 year old behind. I've never been away for more than 2 days!! My daughter's 1st grade teacher told me today that she will be there that week, as will my sister's in-laws. This is a little peace of mind should something come up during the trip. Thanks again, Jennifer
  10. Hi all, So I finally got up the courage to book an appointment with a juvenile scleroderma specialist in New York (we're in California). I have been putting this off for 2 years now, but finally decided it was time. I made the appointment for March 25th, and my daughter and I fly out on the 23rd. We're going to turn it into a mini vacation, so she doesn't associate New York with doctors for the rest of her life. This was a huge decision for me--part of me is so afraid that the doctor will tell me something that I don't want to hear, as I know he is a fan of methotrexate and more aggressive treatment. Jordan's other doctors seem so sure that her localized/linear scleroderma will run its course, then burn out. Her rheumatologist thinks she can even go off her Plaquenil without her sclero returning or progressing. Is anyone on this site a NY local who can maybe give me some advice as far as navigating the Big Apple? Thanks, Jennifer
  11. My daughter's sclero started out as a few unusually colored spots on her left shoulder. 2 months later, it shot down her entire left arm overnight--it looked like she had been beaten. It looked like a huge bruise, which is still what it looks like 2 years later. I would make sure to point them out to your doctor for photos and measurement if they don't go away. Jennifer
  12. My 7 year old has been on Plaquenil for 2 years now. She never had any physical complaints related to her sclero, so I don't know if it has been helpful or not. Her hair has thinned out quite a bit since she started taking it, but no other side effects have occurred. Her illness has not progressed since she started taking it though. Jennifer
  13. there is a juvenile sclero doctor in new york listed as an expert on this site--i have emailed him several times, and he always emails me back--i am sure he would have a recommendation for you if you called or emailed. his name is tom lehman. take care, jennifer
  14. when you get the chance, will you please detail what the light therapy procedure involves? thanks! jennifer
  15. 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
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