On July 23, 1989, I gave birth to a bouncing baby boy, Douglas James. This was the best day of my life! I had always wanted to be a mother!
When my son was 10 months old, he started walking! He was doing some talking and loved saying "uh oh"!
When my son was 12 months old, we had tubes put in his ears, he was having too many ear infections!
When he was 13 months old, he had a virus that made him very sick. He ran a temperature, high at times, and was throwing up. He laid in my lap and was very weak. This started on a Monday and by Friday his temperature had gone away. I went to sit him on the floor and that is when I realized something was wrong. He was unable to sit up alone. He was also unable to walk or crawl. I immediately called his pediatrician. We had been to see him on Wednesday and were told that Douglas just had a virus and we needed to let it run it's course. I called my husband home and we took Doug right in to the doctors. We were told he had Post Viral Ataxia, that this condition often followed chicken pox and that he would be back to normal in about a week. Needless to say, two weeks later, Doug could still not walk. Our pediatrician sent us to a Pediatric Neurologist at Childrens Hospital in Buffalo, NY. Douglas & I spent a couple of nights in the hospital to
run some tests. The Neurologist also told us that Doug had post viral ataxia and prescribed a steroid, Prednisone, for him to take.
Douglas started taking Prednisone when he was 14 mos. old. He did start sitting up alone again and was soon walking again. While the steroid seemed to help, my baby lost his smile that I loved so much! During the months he was on Prednisone, my husband and I decided to divorce. I had to move back to Michigan to be near my parents. I moved in with them before finding a place of my own. Our pediatric Neurologist in Buffalo, NY got us an appointment with Dr. Nigro, a pediatric Neurologist in Farmington Hills. Doug and I moved in with my parents on December 15, 1991.
During this time of chaos, Doug's Pediatric Neurologist in Buffalo, NY decided to start weening Doug off the steroid medication. She had informed us that once weened off the medication, Doug would have no more problems, "He will be fine." As we weened Doug off the steroids, he began regressing back to not being able to walk, crawl, etc.
We were now in Michigan and on our way to see Dr. Nigro for the first time.
When Dr. Nigro heard that Doug was regressing due to lowering his prednisone, and not re-cooperating when raising back up, he made the decision to put Doug in the hospital.
We were headed to Children's Hospital of Michigan, right down in the center of Detroit, for what would turn out to be the first of many visits!
The doctor started my son on a new steroid, an even stronger one. It was an injection into my babies upper leg! I watched as the nurse gave Doug his first shot, then I wept.
The next day I was told that I would have to learn how to give Doug these shots in order to take him home! Are you kidding me, you want me to stick a needle in the muscle on my babies leg?! The nurse came in to give him the shot and told me, "you can watch today, but tomorrow you must do it". I said, "I will do it today". I remained very calm and gave my son an injection! After it was over, my hands started shaking and I thought I was going to pass out. I was so sad that I had to do something to my son that hurt so bad! It broke my heart! After a 10 day stay, we went home.
This steroid, call ACTH or Acthar gel, started working right away. Doug was back to walking in no time. That iwas the good news! The bad news was that the steroid caused my son to stay up all night, gain weight and have rages! All are side effects of steroids.
I was trying to work full time, go to school and stay up all night to keep my baby quieted so he would not wake my parents! I had to give up on the schooling after too many trips to the hospital! My number one job now was to make sure my son had the best life he could have!
To be continued...
