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Old 06-15-2010, 08:46 AM   #1
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laurenb0222 HB User
Question Trying to find someone who has a child with CRMO.

Hello!
Im not sure if anyone still gets on this message board but im in desperate need of help. I have been trying to find someone who has a child with CRMO. My son turned 2 yrs. when he started having symptoms and was 3.5 yrs. when he was diagnosed with CRMO. He has it everywhere from the pelvic bone down to his toes. He is 5 yrs. now and still doesnt talk much about where he feels the pain so its hard to determine where it hurts the most. He has a very bad limp and is in a ton of pain. He keeps getting fevers as well. He was so young when he first developed the disease and he now has a limp and has a hard time walking. Hes been on naproxen and enbrel. I took him off the enbrel bc he kept getting sick at school. Im not sure if I should keep him home and keep him on the enbrel or let him go to school and take him off? UGH! So crazy bc the doctors dont help at all! I really want to go see Dr. Ferguson with hope that she can figure something out with my baby. His sed rate was down on the enbrel but now it is back in the 40's and he feels awful. Im wondering if anyone has thought of doing stem cell for their child with this disease? I would love to hear if anything has worked. Thank you!

Lauren

 
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Old 06-16-2010, 07:55 AM   #2
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Re: Crmo

Here we are in 2010 and our son still is struggling with CRMO..He was diagnosed year and half ago. Thus far he has been in a chronic flair with very few days that he feels good. Was started on Embrel and at first it was a "miracle drug" he was back running and playing and going to school. But after about 2 months the limp was back and spinal pain was increasing...We too have struggled with keeping him in school(school does not know what to do with him since he misses so much school). You can educate the school but this is such a rare disease process that it is hard to make them understand something that we hardly understand!! Currently he has had 4 really bad months!! he has lost 15 lbs(90lbs), loosing his hair, increased pain, increased sleep now it appears that he may have vasculitis in all his internal organs! We have gone to Children's Mercy to have him tested has he has had several issues with kidney's(trying to rule out acute renal failure)at this point CRMO has ruled his life and he is missing out on being a kid We are really at a stand still to find a "cure" for the intense pain. Our sons Dr has been in touch with Dr Polly Fergerson(leading researcher for CRMO) to see if there are any treatments that we have not tried...at this point it is test..test..test! hopefully one day our son can be just a kid without intense pain, limping, multiple organ involvement. I wonder if we treating these kids like kids with bone cancer and had the pain medications available would it not be in their best interest to give them the dosage that would help them live a more "normal" life??...at this time we just hope for a breakthrough in reasearch on this rare disease.

 
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Old 06-16-2010, 11:57 PM   #3
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Re: Crmo

STAY STRONG!!!! school systems has to provide schooling at home! get a doctor note stating her condition and they will provide a teacher to teach him at home. That is what i have to do with my daughter age 11. somedays she can go to school and others are bad. Just remember there is NO CURE. no medicine will cure this condition. All the parents have to understand is how we can control the pain management between outbreaks. My daughter makes herself play games with her friends and does competive horseback riding. This all hurts her bad at night. But she refuses to give up being a kid. Her pain tolerance is real high. But we found out that taking naproxen in morning and night plus with WII fit working on streaching with at lease 8 hrs of sleep keeps help her thru everyday. Like i said this works for her, every child is different. Good luck!!! I do moniter this site everyday. I'm in the works of starting a web site for kids with CRMO to get in contact with each other and the doctors everyone has used and treatments. there is nothing now.

 
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Old 08-13-2010, 05:22 AM   #4
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kelseyb HB User
Re: Crmo

Hi Lauren , have the doctors tried pamidronate? My grand daughter is being treated with this and we have seen a marked improvement , certainly the pain has gone although she does get very stiff. She was diagnosed about the same age as our son and is now just coming 6.
Keep your chin up , this is a horrible condition I know!

 
Old 10-18-2010, 09:47 PM   #5
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ovt22 HB User
Re: Crmo

Just returned from Stanford University...in the process of making sure my little sister indeed has CROMO the doctors are reviewing all of her history and are coming up with an aggressive treatment plan.

She was prescribed two different NSAIDs and will probably start prednisone (really nervous about that but have heard it helps) and as of now the doctors think she'll be recieving humira shots every two weeks... And according to the rheumotologu dept at Stanford that's how they have treated kids in the past and it worked...

I'll keep you posted. My sister has been struggling with intense pain in her right mandible since 2006 she is now 12 years old

 
Old 10-19-2010, 12:36 PM   #6
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Re: Crmo

Our daughter has had an episode this last month with pain in her hip and leg again, 1 year and 6 months ago was last episode. low dose of naproxen didn't work but with food for stomach. Doc at U of M told us to give 2 alieve in the morning and at night for a week over the counter (sweet). this still wasn't working. was given a week dose of methyoprednisonole (steroid). this works great last time. My recommendation is kids systems are very fragile. the less medication given is better. But there is no special 1 pill that will cure this. if the pain is bad, get the steroid for the week dose. than have her on the naproxin for 2 weeks. then see what is going on. implement a daily routine of stretching before school and before bed helps out great with a good sleep. good luck, our hearts go out to you all.
note: since treatment she is back to normal running and playing like a young girl is suppose to. tell them not to give in to this!!!!! there will be pain here and there but the naproxin curves it in between major episodes.

Last edited by luckytigger5; 10-19-2010 at 12:39 PM.

 
Old 10-20-2010, 02:50 PM   #7
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MamaM HB UserMamaM HB User
Re: Crmo

Has your daughter only needed to be on Naproxen and short-term steroids? My daughter tried Naproxen and Prednisone for 5 weeks and had multiple flare-ups during this time. Her doctor just put her on Methotrexate. We are very worried about our 9-year old being on such strong medication. Has anyone who has been on Methotrexate had problems with side effects? I know she is young, but I also worry about the impact this could have on fertility down the road or harm to her future fetuses? How long do people stay on this medication? Another question I have is that she has pain in one area for a day or so and then it goes away, but flares up in another area. Last week her hand was swollen and sore; 2 days ago it was her knee and today its her big toe. Has anyone else experienced this?

 
Old 10-21-2010, 01:12 PM   #8
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sldmom3 HB User
Re: Crmo

Dear MamaM,

I am still trying to figure out how to reply to posts. My 6 year old daughter, K., was diagnosed almost 2 years ago (she had just turned 4 years of age when she started c/o pain) with CRMO. She is currently taking Naproxen 125 mg/5ml suspension of Naproxen twice a day (morning and evening). K. started taking Methotrexate 25 mg/ml vial last spring, mixing 1/2 (o.5) ml. by mouth every week with the Naproxen, drinking the substance with a glass of water. So far, K. doesn't seem to have any bone pain. At last week's doctor's visit, her doctor did blood work and ordered x-ray's of her right pelvic area (where the biopsy was done). He called me the next day, telling me that the lesions look better (getting smaller) and that he was pleased with the results of the blood work. When my daughter has flare-ups, the pain seems to last a day or two, and then disappear, usually occurring at new sites each time. Night time is when the pain seems to be worst, waking her up. When she had a flare-up in her skull, that was nerve-wracking (it was shortly before she had a biopsy). We see a pediatric rheumatologist about every 3 months, at UVA Medical Center (we live in Charlottesville, VA). I think that K. is the only patient that he has with this disease, being a very rare disorder.

Last edited by sldmom3; 10-22-2010 at 12:07 PM.

 
Old 10-21-2010, 08:19 PM   #9
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MamaM HB UserMamaM HB User
Re: Crmo

sldmom - thanks for the information. Are you worried about your daughter being on Methatrexate? I have had so many people tell me its dangerous and we should take her off of it and take Naproxen and deal with the break-thru pain. I think she deserves to be out of pain as much as possible and be allowed to be a 9 year old girl, but we are worried about the long term effects of this strong medication. So your daughter has pain in multiple places that last a day or two? Are these places that you know she has lesions? We know my daughter has lesions in her right foot, sacrum and spine, but lately she's been having a day or two of pain in other areas - her hand, her left foot and leg, her cheek and her toes. Is this normal from your experience? We have a great rheumatologist, but just as you, this is the only patient he has with this disease and this is the first time he has ever seen it. How often do others do bone scans or MRI's to check the sites of the known lesions? Have you had additional MRI's of other locations as pain arises? Thanks for the information.

 
Old 10-21-2010, 11:31 PM   #10
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ovt22 HB User
Re: Crmo

Quote:
Originally Posted by MamaM View Post
sldmom - thanks for the information. Are you worried about your daughter being on Methatrexate? I have had so many people tell me its dangerous and we should take her off of it and take Naproxen and deal with the break-thru pain. I think she deserves to be out of pain as much as possible and be allowed to be a 9 year old girl, but we are worried about the long term effects of this strong medication. So your daughter has pain in multiple places that last a day or two? Are these places that you know she has lesions? We know my daughter has lesions in her right foot, sacrum and spine, but lately she's been having a day or two of pain in other areas - her hand, her left foot and leg, her cheek and her toes. Is this normal from your experience? We have a great rheumatologist, but just as you, this is the only patient he has with this disease and this is the first time he has ever seen it. How often do others do bone scans or MRI's to check the sites of the known lesions? Have you had additional MRI's of other locations as pain arises? Thanks for the information.

MamaM have you been to Stanford?? i think it might be worth your while to go there to their pediatric rheumotology dept. my sister who has been misdiagnosed for the past 4 years is finally getting helped... or so we hope... they have an aggressive treatment plan for her and she isn't the only one in their facility they have helped about 15 children already and have things that will help.... look at my prior post in this thread.... that's her treatment plan.... going to go get a tb test tomorrow with a flu shot before she starts prednisone... and eventually humira shots...


currently she just started two NSAIDs two days ago... and her pain is intense... today alone she has had 5 doses nor-codeine and Tylenol in between each time.... really bad bad bad.... but i will keep you posted about stanford and how she responds praying that it will work...

Last edited by ovt22; 10-21-2010 at 11:33 PM.

 
Old 10-22-2010, 11:30 AM   #11
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Re: Crmo

MamaM,

K. had a bone scan before getting a biospsy done ("to rule out all the bad stuff" - per her pediatrician). She had hot spots in different parts of her body, not remembering where all of them were. K. has experienced pain, starting in her left knee, her right pelvic area, her left occiputal area of skull, her left foot, her right thigh, etc. It's hard to recall all the different areas of complaint. Now, I am nervous about her being on the strong drug, Methotrexate not wanting her fertility to be adversely affected. I'll do some research about this, what the side-effects are. The doctor she sees also treats children with more serious, life-threatening diseases (eg. cancer, etc.), so he is used to prescribing strong, potent drugs. At the time he started K. on the med., he said that "all drugs have side-effects," not telling me what they are for this particular med. Now, I'm interested in knowing the facts. His stated goal is to prevent K. from having any more flare-ups. When it came to flare-ups, K. would have them every 3 to 6 months, it seems, always in different locations. As I said before, when she had the flare-up in her skull, that was nerve-wracking (it lasted quite a while). I suspect there have been times when my daughter has had flare-ups (her pediatrician thinks that K. has a high pain tolerance level) and maybe not told me about them because she didn't want to go see the doctors, fearing what she would have to experience in the way medical treatment.

Last edited by sldmom3; 10-22-2010 at 12:02 PM.

 
Old 10-22-2010, 12:34 PM   #12
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Re: Crmo

ovt22
I am sorry to hear about your sister. Hopefully, the treatment she receives will help her get back to a normal life. God bless her. It's awful when children have to suffer.

 
Old 10-22-2010, 12:37 PM   #13
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Re: Crmo

Our daughter's have a lot of similarities, I think. My K has a high pain threshold too and I think until recently, she didn't tell me about a lot of aches and pains. In my research on Methatrexate, I didn't find anything about the effect on fertility; it just said that you shouldn't get pregnant while on it or for one month after going off of it for fear of damage to the fetus. A lot of people I have talked to have said other things though. My K has confirmed lesions (from both MRI's, bone scans and biopsy: 2 on her foot, 2 on her sacrum and 2 on her spine, but she's getting pains in other places that last a day or two. I guess this is just all part of it. I'm hoping that once she's on the medication long enough (our doctor said it can take 6-8 weeks to notice a difference), maybe some of this daily stuff will subside? When she flares up, is she moody and tired?

 
Old 10-22-2010, 12:48 PM   #14
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Re: Crmo

It sounds like your sister has been through way too much for her young age! I pray Stanford is able to finally help her and get her out of the horrible pain she has been experiencing. Please do update us!

 
Old 10-22-2010, 12:50 PM   #15
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Re: Crmo

MamaM,

When my daughter, K., is having a flare-up, she is usually quiet, spending her time resting in the house. I'm not sure how the pain registers on a scale of 1-10. K. doesn't say a whole lot during the times when she is having bone pain, being stoic, quiet. Usually, it's been at night time that K. has woken up from the bone pain - we'll give her Motrin to help alleviate the pain. Since she's been taking the Naproxen (twice daily) and the Methotrexate (once per week), K. seems to be doing all right, not having flare-ups. Her pediatric rheumatologist has had other patients (I believe) with this disease during the time he has practiced medicine, being an older doctor. Whenever she has a flare-up, she handles it as well as she can - I'm the one who is a wreck, sick with worry (which doesn't help at all). I wish that no-one (adult or child) had to experience this disorder.

Last edited by sldmom3; 10-23-2010 at 11:20 AM.

 
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