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Jordan's Mommy

Do We Need To See A Scleroderma Specialist?

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Hi All,

 

I am new to posting, but I have been a frequent visitor. My 6 year old daughter has non-systemic linear morphea/scleroderma. She was diagnosed just after her 5th birthday after I took her to a THIRD dermatologist. She now sees a board certified pediatric dermatologist every few months (he's also a medical professor at UCLA) as well as a pediatric rheumatologist as Children's Hospital Orange County.

 

My daughter has had ultrasounds, x-rays, pulmonary function tests, echo-cardiograms, and bloodwork done multiple times, and they all come back normal. She was briefly on prednisone, but now takes Naproxen twice daily, and 100 mg of Plaquenil daily. I am worried about the long term effects of the medication, as she bruises so easily, and has had some thinning of her beautiful hair.

 

Other than a discolored arm that is thinning as well, she has no impact from this illness whatsoever, and I hope this will be the extent of her disease. I have been informed by both doctors that her illness can "burn itself away" in three to five years.

 

My husband and I have been discussing taking our daughter to see Dr. Lehman (a top pediatric rheumatologist in NY who specializes in scleroderma--we are in California), but I don't know what he will be able to offer medically that we don't already know or have access to. Any thoughts on this would be greatly appreciated.

 

Thanks for reading my lengthy post! Jennifer

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Hi Jennifer,

 

Lately there have been so many moms with their children being diagnosis'ed that I want to scream! I am so sorry for you and your daughter, and it brought tears to my eyes to read your post! I did exhibit some symptoms of sclero in childhood (mine seems to be systemic diffuse unless the doctor change that down the road), but they can wax and wane, and I do hope your daughter's symptoms will too. That's not to say all my health problems went away since I have an overlap of several things, but I'm 41 now, and have only been getting the most severe sclero symptoms since the very beginning of 2004 again. We're all different though, and it's good that you keep careful watch on your daughter.

 

I was wondering if the Dr. Lehman you're referring to is Thomas J.A. Lehman from NYC. If so, he has written books, and seems to take children's "complaints" very, very seriously! If it's a different Dr. Lehman, please let me know since I'm in upstate NY and may be able to find out more about him (or her) so you won't ever feel like you've wasted time. If you want to send a private message, that's fine too. I hope this is the doctor of your dreams, and that your daughter will get excellent medical care!

 

Best wishes to you and your family,

Elehos

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Hi,

Thanks for getting back to me. We are referring to the same Dr. Lehman--he practices out of White Plains and NYC, and charges $500 for an initial one hour consultation. We are considering making an appointment with him, as he was named New Yorker Magazine's top pediatric rheumatologist when it comes to treating scleroderma. He is also the medical expert from the Juvenile Scleroderma Network, and he has always responded to my emails when I ask him a question through their "The Doctor Is In" feature. ANY information would be helpful! Thanks for caring.

 

Jennifer

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Jennifer,

Welcome to the forum! I'm so sorry you are here due to your daughter's diagnosis. Like Elehos, I've notice more and more parents joining us which is sad, but I hope the people and information in this site can help make the journey easier. Lots of info and lot of support.

 

Dr. Lehman is listed as a Juvenile Sclero Specialist on the Juvenile scleroderma page. I think it speaks very highly of him already that he responds to your emails. I hope you can work out a visit with him for your daughter. Please let us know. You and your daughter are certainly in our thoughts.

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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