Caregivers Support Group

My daughter was diagnosed with Degenerative Disc Disease and had her first back surgery when she was 14, although her symptoms (severe, persistent back pain) actually started at age 10. At the time of her surgery the L5-S1 was herniated and the L4 was bulging.

Three days after her discectomy she lost her eyesight intermittently throughout the day, each time for 15-30 seconds. We called her surgeon, but the on call doctor called back and told us to just watch her at home. Ten minutes later she collapsed and was rushed to the hospital. She was then diagnosed with Type 1 (juvenile) diabetes. Within a week the pain was back, another MRI was performed and we were told the L5-S1 had herniated again.

The next 3 years were spent going from doctor to doctor, searching for anyone who might be able to help her. We even traveled across the country so she could be seen by the Chief of Orthopedic Surgery at Cedar Sinai Spinal Institute in California. He did another MRI and advised her L5-S1 and L4 were herniated, and the L3 was bulging. He warned us that disease would probably travel up her spine until all her disc were damaged. All the doctors told us the same thing...my daughter would live her life in a wheelchair, in severe pain.

She is now 19 years old and all of her Lumbar Disc has herniated, and her T12 and C7 are also diseased. She takes 30 mgs of Narco as well as strong muscle relaxers several times a day – with very little relief. She has steroid injections in her back at least once a month and has had the nerve roots burned – with little success. All together my poor child must take 23 pills everyday as well as 130 units of insulin.

All of the steroid injections have caused her adrenal glands to quit working, which has resulted in a weight loss of about a hundred pounds, uncontrollable sugar levels (often reaching almost 700), hair loss, and severe tachycardia. She is also often sick to her stomach due to the intense pain.

All the doctors we’ve seen have said they’ve never seen a case like hers, especially since it had such an early onset and was not caused by any type of trauma. One doctor told us her MRI looked like it belonged to a severely diseased 70-year old woman.

I find it highly unlikely that there are no other children like her and am reaching out to anyone who might have a similar story.

If anyone has any suggestions or comments I’d love to hear them. It kills me to see my daughter in such agony but I don’t know what else I can do to help her. She has a wonderful pain management specialist, but she hates taking the narcotics.

The cost of her medical care is astronomical. We have great insurance, but my co-pays average about $800 a month - that's almost half of my take home pay each month. I'm working 80 hours a week just to keep our heads above water, plus taking care of her... not much time for sleep so I'm constantly exhausted.

I would love to hear advice on how others have made it through the stress of caring for a chronically ill child. I'm use to stress (I'm a 9-1-1 dispatcher), but I'm feeling so overwhelmed watching my child suffer and not being able to help her.
Posted on 09/26/09, 09:09 pm