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Old 12-09-2006, 11:10 AM   #1
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3lilladybugs HB User
Re: Crmo

My son has CRMO and we recently seen Dr. Polly Ferguson in Iowa. He hasn't started Enbrel but will as soon as it is approved by our ins. He also had 5th disease at a younger age. He is in constant pain now and in a wheel chair. Have you had any luck with pain control?

 
Old 01-01-2007, 08:09 PM   #2
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AliRah HB User
Re: My son has CRMO - He is in constant pain now.

Dr. Ferguson is the most qualified doctor wrt CRMO. I pray that Enbrel start working soon for your son.

Best Wishes.

Ali

 
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Old 07-03-2007, 12:23 PM   #3
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Re: My son has CRMO - He is in constant pain now.

my son, 13, has crmo. after over three yrs and two biopsies, this is what he was finally diagnosed with. he takes sulfasalazine and sulindac. when he has a flare-up, it is usually in his jaw. then he takes prednezone. they said the above meds were the last to try (he has previously taken naproxin and cultrazine too) he still has flare-ups, so now they are going to put him on enbrel. he goes to stanford university in california. does anyone know of other doctors in californa who deal with this?

Last edited by carolmc; 07-03-2007 at 12:33 PM. Reason: mispellings

 
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Old 09-28-2007, 09:14 AM   #4
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Re: My son has CRMO - He is in constant pain now.

Quote:
Originally Posted by carolmc View Post
my son, 13, has crmo. after over three yrs and two biopsies, this is what he was finally diagnosed with. he takes sulfasalazine and sulindac. when he has a flare-up, it is usually in his jaw. then he takes prednezone. they said the above meds were the last to try (he has previously taken naproxin and cultrazine too) he still has flare-ups, so now they are going to put him on enbrel. he goes to stanford university in california. does anyone know of other doctors in californa who deal with this?
I live in the UK my 15 year old daughter is on methotrexate which she has every week by injection. have you tried pamidronate it only worked for her once. She has it in her coller bone knees feet and wrist and ankels she is having a bad time at the moment. So I am looking for any new treatments.
Hope this helps
Louise

 
Old 09-29-2007, 12:22 PM   #5
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toritutu HB User
Re: My son has CRMO - He is in constant pain now.

Hello, I'm new to this web site, but very excited that I have found others with CRMO. My 12 year old son was diagnosed with CRMO a year and a half ago, it took doctors well over a year to figure this one out. My son at the age of ten started walking funny, like his hips were twisted. To make a very long story short he has been tested for everything you could think of and finally we are told our son has CRMO. But many of these messages I have read on this message board , my son has many more areas of his bones that are affected, hip, both legs both wrists and both ancles. I have learned something new on here I didn't know CRMO could affect the jaw???? Our doctors here in Indiana have seen very few cases of CRMO and all our questions are always answered with (we just don't know) what parent wants to hear that? We don't , and there is very little research being done on CRMO. My son too is on lots of medicine, he is on Methotrexate injections once a week, leucovorin, naproxen, and a few other meds that are given because of the side affects of other meds. To many meds for a 12 year old kid. We to have been told about starting enbrel as well. But we are looking for any new info on CRMO and we too have been told about Dr. Polly Ferguson in Iowa. if anyone reading this has anything they can tell us to help our son Please let us know...................... i do have a question for anyone who might know, How long does CRMO last, is it forever or can our son out grow this?

 
Old 09-29-2007, 07:15 PM   #6
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toritutu HB User
Would like any info on CRMO...........

My son has CRMO and it has affected many areas of bone. I would love to have any info on this disease. We have lots of questions. Our son takes many meds for this. Any info would be great.........

 
Old 03-18-2008, 07:36 PM   #7
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3lilladybugs HB User
Re: My son has CRMO - He is in constant pain now.

I haven't been on here in some time. My son has been on methotrexate by I.V. every 4 weeks when he gets Remicade infusions and by mouth every week other than that week. He also has crohn's disesase and hGh deficiency. He was never tested for these until we seen Dr. Ferguson. If there is anyway anyone with CRMO can see Dr. Ferguson at the University of Iowa I would highly reccomend it. She is wonderful and keeps in contact with our rhuematologist here to make sure my son is getting the proper tratment. Has anyone had more than 1 child with CRMO? My 9 yeat old daughter just had an xray today and we have an appt. with the orthopedic surgeon tomorrow becase she has a lesion on her ankle now.

 
Old 03-18-2008, 07:38 PM   #8
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Re: Would like any info on CRMO...........

Quote:
Originally Posted by toritutu View Post
My son has CRMO and it has affected many areas of bone. I would love to have any info on this disease. We have lots of questions. Our son takes many meds for this. Any info would be great.........
I would google search Dr. Polly Ferguson and get in touch with her. She is the best doctor for CRMO.

 
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