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Old 10-23-2010, 09:14 AM   #16
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Re: Crmo

Hello! Im so sorry to hear of another child enduring this pain. My son is almost 6 years old now and he has had CRMO since he was 2 years old. He has a permanent limp now and cannot run. He has flare ups at all times of the day but he has lived with this disease now for 4 years and I dont think he really knows any difference in how life is suppose to be. We first tried naproxen and steroids, and the steroids worked amazing but he gained 10 pounds in one month as a 3 year old and had horrible rages so we had to take him off the steroids. They put him on Enbrel shots as well as the naproxen and the enbrel worked well also, but not as well as the steroids and he had really crazy side effects. Plus he was getting sick all the time because his immune system was lowered. I was also constantly concerned of the side effects that could happen on Enbrel. They were testing him all the time for cancer and making sure his liver function was ok. Kind of threw up a red flag that it was not a safe medication for my baby to be taking. Now we have him on naproxen twice a day and that is all. He is doing ok on it and I feel safe with having him on just that. He is still in a lot of pain but it does subside at times and he is very strong. As a mother I know my child well and he is much happier on naproxen being in a little more pain than being on a drug that had him feeling horrible all the time and still being in pain.
The next step for us is going to Dr. Ferguson to be analyzed. She is the only doctor I have found that specializes in CRMO. I hope that you could find some answers and I wish you and your the best.

 
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Old 10-23-2010, 11:33 AM   #17
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sldmom3 HB User
Re: Crmo

laurenbon222,

I'm sorry that your son has this disease. My daughter, K., has a slight limp on her right side, her doctor telling me (at our last doctor's visit) that it's becoming less pronounced. Every time, we visit the doctor, he has K. walk down a hallway so that he can observe her walk. From reading the different posts on this thread, children can be affected by this condition in different ways, some having more frequent flare-ups than others. I'm hoping that our children can outgrow this disease. Kimberly was taking Naproxen (starting post biopsy) by itself, then when she was still having flare-ups, her doctor prescribed Methotrexate, taking this along with the Naproxen. These drugs seem to be helping K. at this time.

 
Old 12-02-2010, 03:38 PM   #18
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ovt22 HB User
Re: Crmo

Quote:
Originally Posted by mohio View Post
hi, my daughter started metho at age 10 and combined with enbrel, it has been a true blessing. she has been through everything your child has been through so please let us know how we can help!!

is your daughter still on enbrel?
my sister has CRMO and we are so nervous about starting Humira (which is similar to enbrel).

did it treat CRMO for your daughter?

 
Old 12-03-2010, 04:12 PM   #19
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MamaM HB UserMamaM HB User
Re: Crmo

My daughter has been on the Metho for a couple of months now. She was still having flare-ups a few times a week, but we doubled her dose 10 days ago and she hasn't had any problems since then. I think we are in a good place right now and I am very thankful! She hasn't had any of the side effects that they told us to look out for, so that is even better. I'm so happy this drug worked for your daughter too.

 
Old 12-03-2010, 09:16 PM   #20
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Re: Crmo

Today we administered the first shot of Humira she is also on cultrazine and sulfasalisine and prednisone. She is in so much pain right now :-(.

 
Old 12-06-2010, 01:15 PM   #21
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Re: Crmo

Hang in there! You and your daughter are in my thoughts, and I hope the new drug works for her. I am so sorry for her pain!

 
Old 12-06-2010, 01:28 PM   #22
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Re: Crmo

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Originally Posted by MamaM View Post
Hang in there! You and your daughter are in my thoughts, and I hope the new drug works for her. I am so sorry for her pain!
Thank you! Stanford said that they have a good record with Humira, they have had children go into remission on it. I can't wait til this condition burns itself out already! And they have not had any negative outcomes with the children on this shot.

Prednisone seemed to help the most, but the doctor said the side effects of that medicine long term are possibly worse thn Humira, so that convinced our family to go ahead and attempt this.... in 6-8 weeks we will know if we will continue..

if the response to the Humira is not good then she will be administered pamidronate- but the doctors want to hold off on that one because her condition is in her mandible, and this medicine can cause bone tissue to die...

 
Old 12-06-2010, 01:32 PM   #23
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Re: Crmo

I wish there was the same answer for every child/patient with this condition!
So there was a treatment plan that would help everyone... it seems like no one's treatment are alike, they are similar, but not alike.

 
Old 12-06-2010, 01:34 PM   #24
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Re: Trying to find someone who has a child with CRMO.

why is this message board in cancer???!

 
Old 12-07-2010, 12:33 PM   #25
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Re: Trying to find someone who has a child with CRMO.

That's a good question. It previously was under a CRMO category.

 
Old 01-11-2011, 02:04 PM   #26
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Re: Trying to find someone who has a child with CRMO.

My 14-year-old son was diagnosed with CRMO about 3 years ago. He currently has hot spots in his right thighbone, right hip/pelvic area, and his right clavicle. His clavicle is huge and is tender most of the time, but gets even larger and severely painful with a flare. He has been on Meloxicam (stomach couldn't tolerate Naproxin) daily for the past 1 1/2 years, along with 3 separate courses of Prednisone which was pretty much a "quick fix" until he came off of it. He began Sulfasalazine in November (1ooo mg for 2 weeks; bloodwork; then bumped up to 2000 mg daily), but is still having flares. His doctor at Duke suggested Pamidrinate in addition to the Sulfasalazine and the Meloxicam. He is due to have the first Pamidrinate infusion next week. Are there other CRMO kids-teens who have had Pamidrinate while taking Sulfasalazine and an NSAID?

 
Old 01-13-2011, 01:13 PM   #27
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Re: Trying to find someone who has a child with CRMO.

My sister is on Humira shots one every two weeks seems like it's helping her. Ask the dr about that. She is also on sulfasalazine and cultrazine. The pamidrate medication would be used if humira would work bc it's more aggressive.

 
Old 01-13-2011, 02:20 PM   #28
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Re: Trying to find someone who has a child with CRMO.

Thanks for your reply. How long has your sister been on Sulfasalazine? Has she missed a lot of school? My son has been on homebound since mid November and is due to return to school week after next. Also, did your sister experience any flu-like symptoms upon starting Humira?

 
Old 01-13-2011, 07:33 PM   #29
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Re: Trying to find someone who has a child with CRMO.

Quote:
Originally Posted by Bellarocks View Post
Thanks for your reply. How long has your sister been on Sulfasalazine? Has she missed a lot of school? My son has been on homebound since mid November and is due to return to school week after next. Also, did your sister experience any flu-like symptoms upon starting Humira?
my sister has been going through this since 2006 summer, she has been misdiagnosed countless times. until she went to UCSF, who then sent her to a world renown facial radiologists who diagnosed her with CRMO and sent her to Stanford, CA to confirm, and this is where the treatment started, in the rhuemotology department. she has missed ALOT of school, and is now on home studies, we plan on keeping her in home studies until high school which is for 2 years she is in 7th grade right now.
She started on the Sulfasalizine, cultrascene, and prednisone at the end October 2010, she has been weened off of prednisone and has been administered 3 humira shots already.
She is feeling better. she has the hot spots on her mandible, multiple lesions very progressed, due to 4 year of mistreatment. .

 
Old 01-13-2011, 07:34 PM   #30
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Re: Trying to find someone who has a child with CRMO.

and no she did not experience flu like symptoms but she did have to get a flu shot before she started the shots

 
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