Re: Trying to find someone who has a child with CRMO.
We haven't had his eye xrayed as yet, waiting for a joint appointment with eye specialist and the rheumatologist. hopefully next Monday. He has had xrays which showed up the lesions in his leg and also his sternum. The lesion in his leg is healing well they say. Will have to wait and see about his eye.
I took my daughter to see her PCP just this week and we both left in tears!!! He basically said he wanted her "to work through the pain and fatigue so she wouldn't miss school". I was so mad, and she was too. When he left the room, she said "HE doesnt even understand". My daughter has missed over 30 days this year due to CRMO and the side effects of her meds. She takes Methotrexate (an immunosuppressant) so she catches lots of colds, etc. I WAS ABLE TO GET THE MD to SIGN THE HOMEBOUND form, now she will be able to do her school work at home but still go to school part time if she feels good enough. There will be a teacher to deliver her work once a week and work with her for 2 WHOLE hours, but something is better than nothing!
Hang in there! See if you can get a form from the school nurse. We had tried other things also, such as a modified school day (2nd to 7th hours only), rest time as needed, ongoing hall pass so she could take her time walking between classes and not feel rushed (she really struggles with fatigue) and even keeping text books at home so she wouldn't have to carry a heavy backpack.
THERE ARE THINGS YOU CAN DO!! BE AN ADVOCATE FOR YOUR KID! No one really understands what these kids are dealing with except us parents who see it firsthand (pain, fatigue, mood swings, depression over "not being normal", and sick of being sick)
Much love and warm hugs, Lorie
The following 2 users give hugs of support to: mydaughterscrmo ovt22 (06-14-2011), treecricket (08-23-2011)
Re: Trying to find someone who has a child with CRMO.
Oh my gosh - the first thing you need to do is get a new PCP!! That is horrifying! I'm so sorry someone treated you and your daughter that way. Have you tried anything other than the Methotrexate? That did nothing for my daughter - she was in constant pain, fatigue, moodiness, just an absolute mess! We did three consecutive days of Pamidronate infusions and she is now in remission and doing pretty well. I know everyone is different and not the same things works for everyone, but if you have been on the Methotrexate for a while and it hasn't helped, I would push to try something else. Another thing that has greatly helped is Accupuncture every other week and Cranial Sacral Therapy. I'm not a huge "alternative" person, but we were desparate so we have expaneded our horizons and tried many different things. My daughter goes every other week, even now that she is better. We also went to an integrative medicine doctor and had a full blood work-up done. The trauma from the CRMO caused a lot of deficiencies, i.e., her Cortisol level was "that of someone in battle or suffering from Post-Traumatic Stress Disorder," her Vitamin D was extremely low, her calcium was extremely low - lots of things having to do with bones. Now she is taking vitamin supplements, plus Fish Oil and Radiola (for energy), and she is feeling pretty well. Don't be pushed around by these doctors that don't know what to do because your child has a rare disorder. You are right - you have to advocate for your child and keep looking for things that will help. I also got a 504 Plan in place for her at her school so she would legally be protected for accommodations during bad times. I'm glad you were able to get a teacher to come to the house. Hang in there. I'm sorry your family is going through this. How old is your daughter?
Re: Trying to find someone who has a child with CRMO.
Quote:
Originally Posted by MamaM
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.
How is your daughter doing? It's been almost a year! I hope good!
Re: Trying to find someone who has a child with CRMO.
I just found this sight today. At first I was disappointed that most of the postings were so old. Nice to find some more current postings.
My daughter was diagnosed with CRMO this spring. This was after 2 1/2 months of pain. It was very difficult to go through but I'm finding we were lucky it was not longer. She had four locations, three in upper leg/hip, one on the jaw. She also had problems with stye and other skin problems. She has been pain free since May. Actually she did start with pain last summer, but it was not as bad and went away a few months. My daughter has had Chron's for four years as was just starting to grow again an get her energy back when this started. She is being treated with the same medicines used for Chron's; Ramacade and Imurane as well as Sulfasalazine.
I am wondering about long term. I keep finding information of new patients, but not much on someone who has had this condition a few years. Is there any chance of this going away, or is it like Chron's and a life long process? Is it garentee to come back?
We have had some good support here. My only complait was the log wait between specialist. Switching hospitals spead this up. The school actually contacted me about setting up special programs for her. At this point it is not needed, but it is nice to have things in place in case.
Last edited by moderator2; 08-26-2011 at 03:52 PM.
Re: Trying to find someone who has a child with CRMO.
I still lurk around here. my little sister who is 13 years old was finally diagnosed with CRMO last fall after almost 5 years of ALOT of pain and useless surgeries and so on...
she is on Humira shots and that is working for her... eventually she will be weaned off of it also. it has been a long process because it was at an aggressive stage....
you may search my posts and you'll see a full picture of what has been done.
I am happy your daughter is getting this help. and about the future and this condition.... well you just hope that it burns itself out...it can come back or your daughter and my little sister will forget their pain
Re: Trying to find someone who has a child with CRMO.
How often is your sister getting the shots? Is she out of pain now? I know she suffered for so long. Wishing good things for your family! Keep us updated.
Re: Trying to find someone who has a child with CRMO.
I'm glad you found this site. Its not very active, but there are a few people that check in and comment, so it is helpful! My daughter had 3 days of Pamidronate infusions a few months back, and she was doing pretty well up until last week. I think she is having a flare up again - in her left foot and her right knee - they are both the size of footballs and painful. We go to see the Rheumatologist today, so hopefully we will do the Pamidronate infusions again. These poor kids never seem to get a break. I have done quite a bit of research on this disease, and it seems that everyone's experience is so different. I did find a chat room where there were lots of people in their 20's who were posting and they said they never outgrew it. Others said it went away in their late teens. I think you just have to chart the course and hope for the best for your child. I don't think anyone knows what will happen in the long run. Please check in now and again and let us know how things are going.
Re: Trying to find someone who has a child with CRMO.
Just got back from doing x-rays and seeing the doctor. My 10-year old daughter has at least two new lesions - on at the bottom of her left tibia and one on her right knee cap. They think she has one on her left ankle as well, but they couldn't confirm it. So, they started her on Prednisone today and we go in on Monday for Pamidronate infusions. Let's pray it works and she's on the road to recovery again!
The following user gives a hug of support to MamaM: ovt22 (08-26-2011)
Re: Trying to find someone who has a child with CRMO.
She is getting the Humira shots biweekly. However, my parents delay the injections before any camps or when she might be getting sick. Last time she took a 4 week break from the shot and still felt fine (the medicine still works).
It breaks my heart to hear others hurting with this condition.I can cry alongside with you. My family has gone through many many sleepless nights, as my little sister screamed in agonizing pain and none of us could help. I hope your doctors match your children's needs very very soon!
Blessings!!
We are going for a check up in September and to figure out the game plan.
Re: Trying to find someone who has a child with CRMO.
Hi Everyone,
I just discovered this forum a few minutes ago and I am so surprised to see so many of you talking about CRMO. I know its really hard to find people with this condition so the fact that these conversations are happening is really great.
I am just really posting to offer my help or if anyone has questions.
I am 23 years old and was diagnosed with CRMO when I was 12. I've had it in my right foot, both knees, and scapulas. I currently have it in my collar bone.
In my twelve years with this condition I have taken all kinds of medications ranging from Ibuprofen to Prednisone to Pamidronate. Currently I am managing between pamidronate and ibuprofen. My last pamidronate injection was the summer of 2010.
I know what its like to have to manage with the crazy condition and I know how tough it can be, especially for those of you who have young children! Keep positive--I was able to continue my dancing career and made it to law school while figuring out how to manage the pain.
Last edited by moderator2; 09-12-2011 at 05:57 PM.
Re: Trying to find someone who has a child with CRMO.
Finally found this sight again. If anyone is curious, so far my daughter has been doing fine. Occationally she complains of pain, but when I ask the next day, the pain is gone, so I'm not sure if it is related or not. She is growing again also. I go back to the rheumatologist tomorrow to talk about staying connected with information related to this condition (her GI doctor for Chron's has been taking care of the medication). I know there is a doctor in Iowa who does research on this condition.
Re: Trying to find someone who has a child with CRMO.
My daughter just started on Enbrel injections twice a week. Can anyone out there taking Enbrel for CRMO tell me if there is anything I should look for as far as negative side effects? Also, can you tell me if the Enbrel has helped keep your CRMO under control?
Re: Trying to find someone who has a child with CRMO.
I also just found this post now and have lots of questions for you that have some insides to this confusing decease. I’m 26 years old and the doctors now think I might have CRMO. I say think because as I understand this is an excluding diagnose and since the bone biopsy didn’t show anything they figured it must be CRMO and will start the treatment after new years. My problem is that they didn’t take the biopsy from my lesions in my ribs. I got two lumps in the second and third costa, pluss the collarbone and several lesions in my spine. So my question is how did you get the diagnose? On what basis? Because the section chief of infectious disease of Oslo university hospital (which is the man going to treat me) is sceptic about the results of the biopsy and wonder if I just might have chronic osteomyelitis. Therefore I wonder what your symptoms are? On my part I got pain 24/7 in the ribs and i’ve had them over a period of three years (I have been through every diagnosis from bechterew, tietzes, cancer and now CRMO so I haven’t been given any proper treatment yet). I have fever all the time, though not very high. I easily get very sick, like sinusitis and pneumonia. Got serious problems of sleeping as the pain is much more intense at night, and no pills helps so far. My head is not with me at all, got massive headache and it feels like I’m in this fog where I can’t see straight. Is this typical for you diagnosed with CRMO? Because my pain is the same place constant, not moving for over three years...
I’m seriously exhausted of this pain now and hope for some treatment soon. Is there anything that helps? I have a high pain threshold, and I just realised after a resent traffic accident where I smashed my hand into pieces that this pain from my ribs is not something I over exaggerate. The incident and several operations is nothing to the pain in my ribs. Hope you guys can enlighten me on this much confusing decease. thanks
Re: Trying to find someone who has a child with CRMO.
Another new person joining the discussion. I read all the previous posts with great interest. My 5 year old son likely has CRMO but they are still in the exclusion process. A year of fevers and a month of limping finally got us to this point. He had uptake in 2 areas on his leg and foot on his MRI. We are so lucky to be at Children's Hospital Boston where they have seen CRMO before and diagnosed him within a week. That was in October. He was treated with a month of antibiotics in case it was bacterial osteomyelitis. The limp went away, but since then we've had 3 additional fevers and a lot of reported pains, but nothing that truly forms a pattern. The rheumatologist told us not to call unless there was a trend of bone pain in one area. Reading these posts makes me wonder if that is right. I am considering calling now since he has recurring pain in his neck since mid-November. Isn't this awful - I track all his complaints in an Excel spreadsheet! Otherwise it's too hard to spot a trend. I don't know why I'm so reluctant to follow up - partly because he freaks out about doing blood work and I don't want to subject him unnecessarily. But it makes me sad that he can't really keep up with his super active 5-year-old boy friends! This is a nice support group so thanks!
Re: Trying to find someone who has a child with CRMO.
My daughter was diagnosed in sept last year, she is 11.
At first the doctors thought she had a rare form of bone cancer, but after all test proved negative they came to the diagnoses of CRMO.
We have had her on naproxen and prednisone but at present she has had a flare up and this is not working.
Help with this disease is very limited in Australia, just wondering if you have had any luck finding a doctor or a drug program that can help with this disease.
It is breaking my heart watching her childhood slip away, she was a very sporty child and has been unable to really move for 8 months. Any help or advise you have would be so greatly appreciated.
Re: Trying to find someone who has a child with CRMO.
Quote:
Originally Posted by katoh61
My daughter was diagnosed in sept last year, she is 11.
At first the doctors thought she had a rare form of bone cancer, but after all test proved negative they came to the diagnoses of CRMO.
We have had her on naproxen and prednisone but at present she has had a flare up and this is not working.
Help with this disease is very limited in Australia, just wondering if you have had any luck finding a doctor or a drug program that can help with this disease.
It is breaking my heart watching her childhood slip away, she was a very sporty child and has been unable to really move for 8 months. Any help or advise you have would be so greatly appreciated.
I feel your frustration. My son, who is now 16 years old, got sick when he was 7 years old. It wasn't until the past two years that they actually started treating his CRMO - they were treating his JRA first. There is an amazing doctor at the Children's hospital in Iowa who has done a lot of research on CRMO. I have emailed her several times and she is very good on responding.
My son recently was hospitalized for a week and put on morphine because the pain was so bad. He is now on Embrel injections, which to our amazement, is working wonderfully. He said "he feels like a new kid" his pain level has been zero for about 2 months and just this week he told me his pain was at a 1. This is the first medicine that actually seems to work for him.
Also, I have gotten him counseling because of his anger due to this disease and the limitations he has had to deal with - wheelchair, pain, no longer able to play sports. That also seems to be helping. Good luck and God Bless! I feel your pain.
We have experienced this also. I can watch the swelling in my daughters ankles go up and down by the hour. One minute it is her right ankle swollen then the next thing I know it is her knee, then might go to her left ankle or toes. This disease is so cruel.
We are at present treating her with steroids and some days she is better than others, in may last year she ran in the state cross country carnival and now most days she is lucky to walk. Her whole life has been turned upside down at the tender age of 10.
She is a changed child not only physically but emotionally as well, she was a active happy go lucky child, she now sits on the lounge and is very angry.
We have just got her into music lessons as she has had to give up netball, soccer and her karate. I am hoping music will help her.
I understand your pain and frustration. We are off to the specialist again this week and were back in hospital last week due to pain. I would really like her off the steroids due to some of the issues I have heard people having with steroids. If I get any new drug treatments to try I will let you know.
Good luck with your daughter.
Re: Trying to find someone who has a child with CRMO.
It has been a while since I have checked in. I see there are some new families on here since I last wrote a post. We are one of the families that can't seem to find the right medication to control the pain and swelling from this horrible disease. My 11-year old daughter has been on Enbrel for several months, and it has had no effect. She has been in a pretty much constant flare-up for months on end. Her foot and knee are constantly swollen and painful, and like some of you have mentioned, she has changed dramatically. She also just wants to sit on the couch and watch TV all of the time. She has lost friends because she can't keep up with them and they don't understand what she is going through. We were able to just get Humira approved by insurance, so she will be switching over to that next week. We'll see if that brings any improvement - I pray it does. It is so unfair what these poor kids have to go through. Is anyone doing anything else that seems to be working for their children? Its such a lonely road to follow - there are so few of us out there and we are in uncharted territory since most of the doctors have little experience with this. I saw that someone posted that they email the doctor in Iowa. Is it Dolly Ferguson? I have emailed her in the past, and have tried to set up an appointment to just do a review of my daugther's records to see if she had any input on anything we could do differently, but I never heard back. Any suggestions? Thank you!
I hope good!
