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Old 11-15-2008, 01:23 PM   #1
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Question Re: Crmo

Our first post to this site. Glad to see that we are not alone. Our daughter aged 9 was diagnosed with CRMO 2 yrs ago but spikes seem to be occuring more frequently. She is on Naproxen 250 mgs bd. Also on Codeine at present 6 hourly with little relief. Can anybody give advice, we are based in Ireland

 
Old 12-30-2008, 09:47 PM   #2
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Re: Crmo

Hi!

My daugter is 11 as of yesterday and I am brand new to this site. She was diagnosed with CRMO in May of 2008. She is currently on many drugs. I give her injections of methotrexate and she was just taken off of Remicade. She has tried Naprosyn and just about everything else. She is having her tonsils out in Jan. and then she will try Enbrel with the methotrexate. We live in Ohio and just traveled to Iowa to see a dr. who researches the disease. I look forward to hearing back from you. My daughter is struggling with this disease.

 
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Old 01-05-2009, 01:02 AM   #3
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Re: Crmo

Our daughter is 13 and has had CRMO for over 2 years now. Many different treatments tried (and continuing) and teenage years a struggle for her.

Last edited by moderator2; 01-06-2009 at 02:26 PM.

 
Old 03-16-2009, 10:26 AM   #4
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Question Re: Crmo

How does the Methotrexate work? My stepson was diagnosed last month. He had a bout of true osteomylitis year & half ago and just started with intense pain about 8 weeks ago. We took him to Kansas City to Childrens Mercy and they have now dx him with CRMO. At this time the only thing we have tried is Naproxyn 375 mg every 6 hrs and percocet for break thru. He now just went for ck up and a new lesion was found on his wrist. He currently has lesions on spine,femar,pelvis. We are looking for more and different treatments to decrease the pain.

 
Old 03-16-2009, 10:32 AM   #5
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Question Re: Crmo

If you dont mind me asking what was the Dr's name that you took your daughter to?

 
Old 03-16-2009, 06:25 PM   #6
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Re: Crmo

I have been trying to avoid posting here, but I'm a 23 year old male also on methotrexate (mtx) for CRMO/SAPHO & Crohn's Disease which has worked well for everything so far. My understanding is it basically attacks fast growing cells in the body, which is why it's used (albeit at thousands of times the dose we get) for cancer patients. I'm not sure exactly how it works beyond this, but it's kept my skin (acne/pustules), jaw (CRMO) and bowels (Crohn's Disease) under control better than most of the other drugs, though recently we also had to add Remicade (infliximab) before replacing that with Humira (adalimumab) for the Crohn's.

A note for mtx, it's can also used as a rather nasty abortion drug and extra precuations need to be taken for anybody of consenting age. There are also reports debating risk of infertility from mtx which can be of concern, but I know several young women on mtx now married fully expecting to have kids.

 
Old 12-07-2009, 11:14 PM   #7
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Re: Crmo

My daughter was diagnosis when she turned 10. She was very active playing hockey and soccer. When she fell playing hockey fractured her L2 (were the hot spot weakened the bone) that when the symptoms started to become active. She has went thru multi tests and found out she has 3 hot spots. R/H leg below knee, R/H rib & on the spin. This was found from a MRI and complete body/bone scan from U of M (shadows). Had to do the biopsy to tell us it was crmo. Before the biopsy the doctors told us it was cancer and to brace for the worst. What a relief!! They prescribed Azithromycin then steroid pack (the same for asthma) 1 week dose and she improved like she was back to the same person before this. Before steroid treatment she was on strong narcotic (oxycodone) because of the sever pain (couldn't move off the sofa) really upsetting I couldn't do anything. She has been pain free for 3 months but developed a little limp in the leg that has the hot spot. Per the doc @ U of M the symptoms will respark when there is an injury don't know why that triggers the immune system to attack the bones. As for missing time in school I got a letter from my doctors stating she has a rare condition and the school must provide a home tutor or home schooling. I hope this helps. Please stay in contact

 
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Old 12-22-2009, 01:35 PM   #8
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Re: CRMO

My daughter was diagnosed with CRMO in January or February of 2009, after having a biopsy done in her right pelvic area. She first started complaining about pain (in her left knee) in April 2008, having just turned 4 years of age (birth date 3/17/04). My daughter has seen a pediatric osteopathic doctor (who did the biopsy) and now is under the care of a pediatric immunologist. Our doctors are all based at the University of Virginia Medical Center. She has experienced pain in her right pelvic area (in September 2008). She then had pain in her skull (December 2008). After the biopsy, she experienced pain in the top right part of her foot (spring or summer 2008). She has recently complained about pain in the top part of her right thigh (occurring a couple of weeks ago), not having reported having any pain for approximately 6+ months. The pain seems to come and go with her. My daughter is taking Naproxen and during the last visit to see our pediatric immunologist (last Thursday afternoon), she will now take Methotextrate (correct spelling?) with the Naproxen, the doctor telling me to mix it with the Naproxen once a week. Before the biopsy, we would only give my daughter Motrin - it seemed to effectively help her with bone pain. When she had the biopsy, the anesthesiologist told me that Motrin is good for bone pain. Has anyone given Methotextrate to their child for CRMO (especially someone so young) and how did he/she respond to it? I am nervous about this latest drug.

sldmom3

 
Old 12-22-2009, 01:39 PM   #9
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Re: CRMO

My daughter was diagnosed with CRMO in January or February of 2009, after having a biopsy done in her right pelvic area. She first started complaining about pain (in her left knee) in April 2008, having just turned 4 years of age (birth date 3/17/04). My daughter has seen a pediatric osteopathic doctor (who did the biopsy) and now is under the care of a pediatric immunologist. Our doctors are all based at the University of Virginia Medical Center. She has experienced pain in her right pelvic area (in September 2008). She then had pain in her skull (December 2008). After the biopsy, she experienced pain in the top right part of her foot (spring or summer 2009). She has recently complained about pain in the top part of her right thigh (occurring a couple of weeks ago), not having reported having any pain for approximately 6+ months. The pain seems to come and go with her. My daughter is taking Naproxen and during the last visit to see our pediatric immunologist (last Thursday afternoon), she will now take Methotextrate (correct spelling?) with the Naproxen, the doctor telling me to mix it with the Naproxen once a week. Before the biopsy, we would only give my daughter Motrin - it seemed to effectively help her with bone pain. When she had the biopsy, the anesthesiologist told me that Motrin is good for bone pain. Has anyone given Methotextrate to their child for CRMO (especially someone so young) and how did he/she respond to it? I am nervous about this latest drug.

sldmom3

 
Old 12-27-2009, 11:17 AM   #10
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tigertoes222 HB User
Re: Crmo

Hi i am 17 and i have crmo. I am affected in my clavicals, my spine (neck and back), my hips, anckles and knees. CRMO is very painful and its hard to treat. I am on Methotrexate now and i know that its one of the only things that has helped me (other than pamedronite, idk how to spell it) but i do a few things to help me with pain. First i take lots of vitamins daily fish oil, calcium, flaxseed oil, vitamin c and d supplaments and more of that fun stuff. I eat healthy, I cant tell you how bad it flares up when i eat lots of junk food, stay away from junk food. I keep my weight healthy the fatter you are the worse it is for your bones... anywhere on your body. I take warm baths and get a massage, Im not pampered lol but it does help a lot. I dont do any impact sports (running, jumping, dancing, etc.) I stretch every day and do light exercises when i can. When i have a spazm i take a muscle relaxer which seems to help for a few hours. I take the liquid gel ibuprofen (works better than the solid kind) 800 mg when i feel pain (which is most of the time) None of these things will make it go away but they will help, so i hope that helped.

 
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Old 12-27-2009, 11:12 PM   #11
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Re: Crmo

hello everyone! I am so glad to see more replies! my daughter will be 12 on tuesday and is doing so much better! she is on methotrexate and enbrel and is back in school full time! it is such a blessing because it is the first time in 2 years she has been able to go to school for 2 days! there is hope! she is now in remission after 2 ribs being removed, a bone marrow bx, tonsils and adenoids removed and 5 months of physical therapy! her alopecia areata is now also in remission. i hope everyone well and please contact me with any relpies or questions. God Bless!!

 
Old 12-27-2009, 11:15 PM   #12
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Re: CRMO

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!!

 
Old 01-03-2010, 12:49 AM   #13
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luckytigger5 HB User
Re: CRMO

Quote:
Originally Posted by sldmom3 View Post
My daughter was diagnosed with CRMO in January or February of 2009, after having a biopsy done in her right pelvic area. She first started complaining about pain (in her left knee) in April 2008, having just turned 4 years of age (birth date 3/17/04). My daughter has seen a pediatric osteopathic doctor (who did the biopsy) and now is under the care of a pediatric immunologist. Our doctors are all based at the University of Virginia Medical Center. She has experienced pain in her right pelvic area (in September 2008). She then had pain in her skull (December 2008). After the biopsy, she experienced pain in the top right part of her foot (spring or summer 2009). She has recently complained about pain in the top part of her right thigh (occurring a couple of weeks ago), not having reported having any pain for approximately 6+ months. The pain seems to come and go with her. My daughter is taking Naproxen and during the last visit to see our pediatric immunologist (last Thursday afternoon), she will now take Methotextrate (correct spelling?) with the Naproxen, the doctor telling me to mix it with the Naproxen once a week. Before the biopsy, we would only give my daughter Motrin - it seemed to effectively help her with bone pain. When she had the biopsy, the anesthesiologist told me that Motrin is good for bone pain. Has anyone given Methotextrate to their child for CRMO (especially someone so young) and how did he/she respond to it? I am nervous about this latest drug.

sldmom3
My daughter was diagnosed with CRMO in June 2009. She has been pain free until last month she was complaining about pain in her leg and rib again. here we go again!!!! Found out that this was after gym day at school. She was put on naproxen twice a day. She doesn't play hockey or soccer anymore but she is still active (Horseback riding, Softball, roller skating, ect,) We have found out that being active helps w/out physical contact and proper sleep. We just bought the WII fit and she loves that The game has done wonders for her. It helps with her balance and stretching plus it is fun. Whatever we can do to control the pain management. She just completed her physical therapy (started to walking with a limp because of the pain before June) this has been corrected with proper stretching and strengthening of the leg muscles. I hope this will work? I'll let you all know if anything changes.

Note: noticing attitude change (being short fused and tired often) when pain flares up.

 
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