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...
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.
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?
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.
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?
Re: Trying to find someone who has a child with CRMO.
Quote:
Originally Posted by Bellarocks
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. .
Re: Trying to find someone who has a child with CRMO.
Quote:
Originally Posted by homeschool
I have CRMO im 14, embrel has worked for me as well as IVIG and IV steroids.
How long have you been diagnosed with it? Did it take a very long time to diagnose?
It took my little sister nearly 5 years to get diagnosed, and now she is being treated at Stanford (about half a year), Humira, Naproxen, Sulfasalazine, Cultrascene, Prednisone... wow that's a big list, but that's what it is for now . She has it in her mandible. Where is yours?
Do your doctors say you'll outgrow it? the disease will burn itself out?
I really hope you recover, it hurts so much to see how much you hurt!!! may God continue to give you the strength I know you need.
Re: Trying to find someone who has a child with CRMO.
My 6 year old daughter has CRMO, having started getting symptoms right after she turned 4 years of age. She's had bone pain from the top of her head right down to her feet. My daughter see's Dr. Frank Saulsbury at U.V.A Medical Center (we live in Charlottesville, VA) who has her taking 1 1/2 tsp. Naproxen twice daily and then taking 1/2 ml. Methotrexate once a week orally (mixed with the Naproxen). She seems to be doing all right, no episodes of bone pain. This doctor listens to you when you talk about your child, being interested in preventing the child from having another flare-up (having told me that that's the goal of treatment). She has had a limp, currently not being so pronounced, the bone in her pelvic area healing up over time.
Re: Trying to find someone who has a child with CRMO.
HI
I am also trying to get me head around this condition. Has anyone found anything to prevent the flare ups. My son was diagnosed a year ago on his second birthday, since then he has had flare ups in his arm, spine, sternum and now it seems to be effecting his eye socket. He is only three. Has anyone been able to identify something that triggers a flare up. Do you think it happens after some sort of trauma (slight) or cold or flu. He is being treated with an anti inlfammaatory drug at the minute but has had so many flare ups this year I am wondering if we should be trying something else. PLease let me know if anyone else has any ideas.
Re: Trying to find someone who has a child with CRMO.
Hi,
I'm sorry your son has this condition too! He's so young. That has to make it even more difficult because he probably can't communicate as much as he needs to because of his age. We've been dealing with it for just over a year, and I still haven't figured it all out. My daughter had flare ups in her right foot, 2 in her sacrum and 2 in her spine (that all lasted about a year). She just had a follow-up MRI, and they said all the lesions are gone so she is in remission. That was great news, but a bit troubling because she's in more pain now than ever. Her Rheumatologist just diagnosed her with secondary Fibromyalgia. What's confusing to me now is that the pain is exactly the same as the CRMO pain. She did her first Pamidronate infusions this week, but I'm not sure if we will know if it worked since she no longer has the lesions. I'm very confused. Some people I've talked to said the flare-ups can be triggered by slight trauma; others have said they will come and go for no apparent reason. My daughter didn't have any trauma to her body prior to getting this disease or the flare-ups. Have they done MRI's to confirm that he has lesions in those areas? Have they talked about putting him on stronger medications, i.e., Methatrexate, Humira or Pamidronate? Our daughter is still on the Methatrexate. I'm not sure if you go off of the drugs if you are not currently in a flare-up or if you stay on them all the time. Our Rheumatologist just said to keep her on them for now. Has anyone else had pain without known lesions? Is it only considered a flare-up if there is a lesion on the bone? I wish there was a support group where we could talk instead of only posting to this site. I would love for my daughter to be able to talk to other kids that are going through the same thing as her, and it would be great to have a conversation with a parent going through this too.
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Re: Trying to find someone who has a child with CRMO.
Thanks for your reply. They have spoken about Methotrexate although this has not started yet. Did your daughter find it hard to take? Because my son is so young for him to have an MRI scan involves him having to undergo an anesthetic so he has not had one since last year. He has had numerous xrays that have showed up the lesions. The MRI showed up a number of hot spots but the breakouts have all been in different areas than the MRI had showed up. His current one seems to be effecting his eye socket. What the doctor is woried about is that it will cause the bone around the eye socket to deform. Have all of your daughters lesions cleared up without any damage to the bones. I am so glad to be speaking to someone else that has experience with this disease, Thanks for listening to me!!!
Re: Trying to find someone who has a child with CRMO.
lappyo1,
I feel sorry for the children who have CRMO - it is hard to watch your child endure the bone pain. Fortunately, my daughter hasn't had a flare-up in months, so I'm hoping that she could be in permanent remission.
Re: Trying to find someone who has a child with CRMO.
lappy01,
My daughter, K., is 6 years old, having CRMO. In my last post, I mentioned what meds. she's currently taking. So far, she seems to be doing well on the drugs that she takes. I have no idea what causes a flare-up (unfortunately), just wishing that none of our children had it. I hope that your son does better, getting into remission.
Re: Trying to find someone who has a child with CRMO.
My daughter has been on the Methotrexate for a few months. They kept raising the dose every couple of months because it didn't seem to work for long. She currently takes 10 pills once a week. With this, she also has to take 3 Folic Acid pills daily. You would most likely need to crush these up and put them in food since your son is so young. For us, the Methotrexate didn't make a huge impact. However, my daugther had the Pamidronate infusions (3 days) last week, and since then, she has had absolutely no pain! She's like a completely different person. This past weekend was the first weekend in several months that she didn't just lie on the couch from pain and exhaustion. The MRI's she had recently showed that all of the lesions were gone and the bone completely healed. For your son, were they able to see a lesion on his eye socket through X-Ray? Is it impacting his vision at all? With all of the medications, there are potential serious long-term side effects, i.e., with the Methatrexate, she has to have bloodwork and urine testing every month so they can check the liver. She's tolerated both medications very well though. Our Rheumotologist has never treated anyone with this disease before, so I found that sharing with him what others have posted to this site and being vocal about my preference for treatment really helped. Good luck, and please let us know how he is doing! I'm glad there are now a few parents that are actively posting on this site. When I was sitting with my daughter in the infusion center last week, there were several parents there with their children getting infusions for Arthritis. It was so nice to see the support they were offering one another, and the advice they shared back and forth. Unfortunately, there's so few of us with kids with CRMO that we don't get the benefit of having others to reach out to as much. I'm always happy to share anything we've learned along the way!
The Following User Says Thank You to MamaM For This Useful Post: lappy01 (02-28-2011)
Re: Trying to find someone who has a child with CRMO.
lappy01,
My daughter seems to respond well to the drugs that she's on, not having a problem with them (so far). Concerning her bone lesions, from what I have been told, they've either healed up or are still in the process of healing. K. takes a liquid form of Methotrexate, mixing it with her Naproxen (she takes this liquid med. twice a day) once a week, having her drink the substance. Sometimes, K. complains of stomach pain, so I'll keep her home from school, not completely certain if it's related to the meds. that she's taking.
MamaM,
Yes, it is good to have others that you can talk to about this condition. You're right about that.
The Following User Says Thank You to sldmom3 For This Useful Post: lappy01 (02-28-2011)
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