I love to encourage other people, but I have learned that we need it more than ever at this time. Having a child with any chronic illness can be very lonely, but we are so blessed to be surrounded by such an amazing support system, and people who are praying for us! We are truly thankful!
I posted a couple of months ago regarding my oldest son who is 9 years old, and the health challenges that we were having. After seeing a rheumatologist, they thought that he may have Juvenile Rheumatoid Arthritis (JRA). However, another MRI would have to be performed to say for sure. Then, we went into battle with the insurance company who didn’t want to approve the test. Well, we won that battle, got the MRI, and finally have a diagnosis!
For over 3 years, he has been dealing with excruciating pain, stiffness, and limping. We saw an orthopedic specialist and were told that they were growing pains, but the pain continued and got worse over time. Finally, I asked to see a different specialist, who finally gave us our referral to a rheumatologist. Some days are good, some days are worse, but there is some pain daily. Some days, he cannot walk at all. Shopping or long walking trips can be a nightmare. Usually, he is in so much pain that he has to hop, or we have to leave the store all together. It is very difficult to watch your child suffer and to not be able to do anything about it. It is a helplessness that is indescribable.
DJ was officially diagnosed with Chronic Recurrent Multifocal Osteomyelitis (CRMO). To read more about it click here:
http://www.aboutkidshealth.ca/En/HealthAZ/ConditionsandDiseases/InflammatoryConditions/Pages/Chronic-Recurrent-Multifocal-Osteomyelitis-CRMO.aspx. This disease only affects 1 in 1 million people, and our son is one in a million! There is very little awareness about this disease, but we plan on helping to change that. Basically, CRMO is when the immune system wrongly attacks the bone, causing inflammation in the bone. DJ has lesions on his bone in the hips, knees, ankles, and wrists. He just started to have wrist pain on last week, but ankles and knees have been affected for some time. It has been a very difficult time, but we know that we will get through it. There is a great chance for remission, and we are trusting and believing that it will come soon!
As far as treatment goes, we are continuing with physical therapy every week, we have a new pain medication, and he will be taking methotrexate injections once a week. It is a very low dose chemotherapy drug, but very little chance of side effects, so we don’t have to worry about hair loss or fatigue. To combat any effects that it could have, the doctor has also given him folic acid and Zantac. We are also eating healthy to build up his immune system. DJ will also be receiving a sitting walker for times where it is too painful to walk, so that he can get through long walking trips, however we will not be dependent on it.
My son has dreams of attending Yale and becoming a computer engineer (although my vote is still for Morehouse)! He wants to create the next big software or video game. He loves gaming, Legos, and Minecraft. He is a normal 9 year old little boy. We are all in an unknown territory, and that is very scary, but we also know the Great Physician, and we trust in HIM, not in this disease. We are just making sure that he enjoys his childhood and grows from these challenges.
I am also posting a link that shows someone else that is battling the same illness. Although, we have not posted our journey in video, many children have, and are bringing awareness to CRMO. https://www.youtube.com/watch?v=bTqsrbcINZY