I hate CRMO
Well I am having a freak out moment. My daughter, Amy, who has CRMO (chronic recurring multifocal osteomylitis), is having pain again. She lives with pain on a daily basis, but at this moment she is having extensive pain in her feet, ankle and knee. I know I have a page all about what CRMO is, but I haven’t actually expressed my hate for this disease.
CRMO (Chronic Recurring Multifocal Osteomylitis) is a Childhood Auto-Immune Disease (CAID).
We have good times with it, where the pain doesn’t stop her from living life, but then at other times the poor kid is in a lot of pain. CRMO can be dibilitating. Its aweful. As a family, it stops us from living life to the max. The doctors want her to live normally, but the reality is that the pain is too much to bear at times and normal is just not possible. Does this mean we have to accept a new type of normal? Is CRMO our new normal?
Its not just the pain in Amy’s feet and legs…its also the treatment plan. She has to have megafol every day except the day that she has the metholtrexate tablets. In large doses the metholtrexate can be used as chemotherapy for cancer patients, and in small doses it helps people with osteo issues. On the 24th day of each month she has to have blood tests to check if the medication is interferring with her liver, as well as CRP levels (inflamation indicator). Last month her level was 2, and the month before that was 4. It will be interesting to see what it is this month as she has been complaining of a lot of pain.
okay, vent over!!!
4 Comments
Arlyn Collett
I have two boys, 12 and 11, that have been diagnosed with CRMO. One has it in his jaw and the other in his iliac bone. I also hate this disease and I hate that I can’t do anything to take away their pain. My younger boy has had some pain relief with essential oils (iliac bone), but my older boy is suffering and I am at a loss. I look forward to them overcoming and out growing this horrible condition!
Mischievious Mum
Thanks so much for your message Arlyn, CRMO is a terrible condition. Its an autoimmune disease. I have been reading a lot about ways to help and combat the issues that it brings.
We have now just entered our second year since diagnosis, however really, its been an issue for much longer – just undiagnosed. Amy is doing really well at the moment. Her doctors name is Dr Navid Adib and while I have had moments of questioning his expertise I have realised that while we aren’t pain free we are managing. We haven’t had a CRMO day off school since last year and we are hopeful. Mind you Amy is still taking pain relief at school. The dr doesn’t believe she should need it – but he isn’t the one trying to keep up with friends, school work and school expectations. Its not a fun journey.
Do you mind me asking what essential oils you use. Its a good idea to stay away from forum sites about CRMO, I found that I got to the point where CRMO seemed so helpless.
Our last MRI and body scan in February indicated that while Amy has traces of CRMO in her system – it has certainly decreased. We are happy about this, but I wonder what will happen when we finish the metholtrexate treatment plan.
Thank you so much for sharing your story with me. CRMO is a long and experimental journey. I hope that you find your answers soon. I don’t know where you and yoru family live, but if you need answers you could make contact with our Dr. He works out of the Brisbane Royal Children’s Hospital.
Kind Regards, and best wishes.
Arlyn Collett
We live in Idaho and don’t have the best selection of doctors. We had an appointment to see a pediatric rhuematologist in Salt Lake City last month, but my son had gone so long without pain, the trip was so long and expensive, and my other son was having such good results with the essential oils that we cancelled it two days before. Now I question the wisdom in that!
We have plans to move across the country in a couple of months and part of me thinks of waiting until we get into an area with better health care options.
The essential oils we are using are from doTERRA (www.doterra.com). Specifically, we have had excellent success with Deep Blue, a blend of wintergreen, camphor, peppermint, blue tansy, german chamomile, helichrysum, and osmanthus. My younger son was able to stop using ibuprofen and hydrocodone after using the oils. Unfortunately, my older son is not so fortunate and is suffering quite a bit of pain. His CRMO has affected him in his jaw and he often swells during flare ups.
I hope your daughter finds relief for her sake and the sake of your family. What a mean and nasty disease this is!
Mischievious Mum
Hi Arlyn,
CRMO is a nasty disease. I really hate it. Thanks so much for the information on the essential oils. I will look into that for Amy. I would suggest getting an appointment with a ped. rhuematologist. We feel that the positive results that we have had with Amy is because we have a great doctor.
I was told at Amy’s last appointment that there are 7 kids at this time that Dr Adib is treating. It seems that CRMO is a disease that still is quite rare.
If the ped. Rhuematologist you see isn’t familiar or doesn’t seem competent, maybe you could suggest to him or her to get in touch with Dr Adib at the Brisbane Royal Children’s hospital. These days an email and a phone call across oceans isn’t as uncommon as it once was. For quality of life long term your son needs to have the CRMO under control.
Anyway, I hope that all goes well for both of your sons. I hope that one day there is a cure for CRMO for all kids suffering.
xo