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dawn

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About dawn

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    florida
  1. 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
  2. Rachel, There isn't a right answer or right thing to say or do for your friend... just being there, being available, being a friend is enough. As a friend, a parent, a spouse, a caregiver you feel helpless. Sometimes when we are having a bad day, my daughter will comment her life is harder than her friends. Things are tougher for her, and I tell her she is right. I hug her tight and cry with her. It seems just having someone confirm that life isn't fair is all she needs. Then the next second she is up and running around playing. Her best friend since Kindergarten sometimes comes over to read her a book, watch TV, or if she is in the hospital she will come over and just be there. Pushing all the buttons to the bed and calling the nurses for their hundredth popcycle... And then they just laugh, and laugh. Hope this helps in some small way. :D Dawn
  3. Lisa- This was the first time I have heard of the spoon theory... it is a great discription. My 10 yo also has limited number of available spoons (energy) for the day. She can borrow from the next day but then the next day is shot. I am going to print it out. It is wonderfully written and unfortunately so true for some. :D dawn
  4. Scleroderma And Children

    Carolyn, Hi. I have been away from the computer for a bit. Sorry it has taken so long to write you. My daughter was on methotrexate for a little over 2 years, she was 6 years old and in kindergarten. Recently we thought her L. scleroderma was spreading and she was started back on MTX in October when she was 9 years old. For the 2 years she was on it she never had a problem but in October she got a luekopenic - once the MTX was stopped the body corrected the low WBC level with out a problem. The scleroderma was found not to be spreading (by biopsy) so we didn't have to restart it again. We (my husband and I) wouldn't have a problem using MTX again if her linear scleroderma started to spread. She was a little cranky and tired the day after but we never had any problems with it. At this point she barely remembers getting the shots of methotrexate when she was 6 & 7. She was on 25mg/1cc injections once a week. Before people/kids would ask her why her foot was purple but it is mostly faded now if I didn't tell you, you probably wouldn't even know she has L. scleroderma and the morphea on her hip has disappeared -I can't even find it. I used to give her shots in the middle of the night (2 and 3 am), she would have a little wimper but mostly didn't remember that I had given her the shot in the morning. You give it with an insulin syringe so the needle is very fine and short. The best advice I can give you, is follow your heart and have a good doctor that will monitor your child closely. The right thing for your child isn't always the easy route to take. Methotrexate was a success for her but broke my heart to give her... and hopefully it will continue to be a vague memory for her. It is helpful to chat with other parents that really understand the agony this disease causes the whole family! Keep in touch. Dawn
  5. What Was The Environmental Spark!

    One more thing, I recently went to a seminar for parents (the main focus was juvenile diabetes) and the doctor speaking said something that I keep thinking about... he said many think the next world war will between nations but he thinks the next war will be an auto immune outbreak as all the auto immune diseases are on the rise. Margaret, I have recently read a great book about special diets for special kids. If you would like, I can send you a PM with the title and author's name. I love this book it talks about it all - autism, celiac, gut permeability, food allergies, additives to food, etc. - in relationship with kids. 150 Great recipes too. Night, DAWN
  6. What Was The Environmental Spark!

    We had just moved into an old victorian house in GA that we were renting while my husband finished up at the MCG... it was 6 months later that I realized the water wasn't right! We always used a glass cup to drink from so I didn't notice right away. It wasn't until I went to rinse out a small white plastic cup my oldest daughter had gotten at a restaurant I noticed a slight discoloration to the water. At that point we stopped drinking and cooking with the tap water until it was tested. When I took it to the Water Department they tested it and a week later never heard from them so I took them another sample. They took it to be tested and again a week later I didn't hear from them. So again I took it to the Water Department and they said they thought I must be joking - I must have gotten the sample from a puddle of water on the ground not the tap water in the house. I told them to come to the house to obtain the water themselves. They did that morning by early after noon the entire front yard and part of the street was dug up to expose the water pipes. No one at the Water department would talk to me about what was going on - except one of the techs in the yard... I was crying and pleading with him to tell me what was going on. He said when they replaced the water main 15 years ago!! they neglected to hook this house up and it was only receiving water that was being back washed in to the old pipe. I ask them what the water test showed and he said it had everything high bacteria counts of course but high metal counts too. I asked which metals and he said all of them. In something like this, one can't prove cause and effect. I did check. My youngest daughter has scleroderma, diabetes and celiac, all autoimmune. I think it was the water. How stupid of me. Her endo. said she believed her immune system is failing, like dominoes. I try not to dwell on the past as nothing can come out of it but I am deeply saddened and at times feel extremely guilty. I picked out the house. I'm with you Michael, I think it was the exposure to metal... and what ever else. Take care, DAWN
  7. Scleroderma And Children

    Jennifer, Great to talk to you on the phone. Keep in touch. Dawn
  8. Scleroderma And Children

    albertom, your daughter is nine like mine. our daughter has diabetes and celiac (and sclero) so she sees endocrinology, gastrology, and rheumatologist. and her endo doctor was totally against her taking Methotrexate. it is hard to determine what advice to follow and to corrdinate it all. we gave the doses of MTX and I do believe it was the right thing. does your daughter have any skin involvement? does your daughter miss a lot of days of school? appointments and sick days add up. what state are you from? we're from Florida. how did they determine your daughter had systemic sclero? is it because of the raynauds? Dawn
  9. Scleroderma And Children

    dear forum friends, It is difficult to say what is going on because the sclero. is not following the "normal" pathway of a "typical" case of sclero. We're still in the process of figuring it out. She had what seemed like a typical case of Linear Sclero. and Morphea... now for some reason, within the last couple months she has unusual complaints and more skin involement. All of her back, chest to neck, left hand and right wrist, and left foot. The original spot was her right foot/ankle and calf/thigh. Also, recently diagnosis. with GERD and lots of GI complaints. Some days are fine, she gets up and is able to do all the things a 9yo does... but other days she seems too weak and her legs hurt. For instance, some days she is limping and other days she refuses to walk around at all, resorting to crawling on her knees. One night she went to take a bath and couldn't get out of the tub. She already has so much going on living with diabetes and celiac (an auto immune response to ingestion of wheat, oat, barley, flour - like micro bombs going off in the small intestine blowing up the villa). DAWN
  10. hey to all, my name is dawn and my daughter was diagnosis. with scleroderma 3yrs. ago when she was in K-garten at the young age of 6 (she is currently 9yo). I've read most of the personal stories and postings and it seems most are about adults. our daughter (baby-cakes) also has juvenile diabetes and celiac disease. any other parents out there? DAWN
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