And Then There Was Cameron!

By Kris
December, 1999

In the early morning hours, just before 4, of January 15th, 1991 my son Cameron was born. He was 7 lbs. 7 oz. with Apgars of 9. He was extra special, I had had a C-section with my first child, but Cameron was all natural.

After about 3 hours alone in my room, I asked the nurse why he hadn't been brought to me for feeding. She told me that he had an excelerated heart rate and was being kept in an isolette with extra oxygen. After that, everything for the next five days was a blur.

I had trouble feeding him and they almost made me go home without him, but he took three ounces of milk from me an hour before discharge time and they let me take him home.

For the next 10 days I tried to get him to wake up and nurse more than once every twelve hours, which seemed to be his preferred schedule. I could see that he was not gaining weight and on his fifteenth day I tearfully sent out my husband to buy formula.

Well, he took to the easy flow bottle. It was so much less work for him, but then the reflux began. Of course, today I know that it is called reflux, at the time we called it the Linda Blair special. Nobody ever burped Cameron over their shoulder the second time!

By four months of age he was still not holding his head up and we brought our concerns to our pediatrician. He dismissed them, saying that all children developed differently and that he was gaining weight, so he was fine.

At eight months he was still not holding his head well, sitting up or allowing his feet to touch any surface. If you held him under the arms, he held his legs out parallel to the floor -- like he was sitting on air. Of course, you could only do it for a few seconds as he was already 20 lbs. Again the pediatrician told us not too worry.

By one year of age he was 25 lbs, sitting unassisted (unless you count the rolls of fat), he held his head way back and to the right, still did not weight bear and was the object of much staring anytime we went out in public. We insisted that the pediatrician send us to see some other professionals to figure out what was going on.

Our first experience with a neurologist was absolutely frightening, but all the others we have seen have been quite pleasant, so I guess we got that one out of the way rather quickly. If you have ever met a neurologist, you know what I mean.

He told us that Cameron most likely had something called Prader-Willi and that he would grow up retarded, obese and would probably die relatively young from heart failure brought on by the obesity. We said "Thank You" and the rollercoaster ride began.

Eighteen months, 3 blood series, 1 urinalysis, 1 CT, 1 MRI, 1 EMG and 5 specialists worth of prodding, poking and measuring later we were told that he tested negative for everything and despite having many myopathic features, he had none of the actual myopathies. We said "Thank You" and decided that we might never know what was wrong but that wouldn't stop us from doing what was right.

By this time we had already started Physical and Speech therapy and a diet! I had been feeding him the same way that I fed my first son, who was active. Once he stopped gaining weight and his length caught up to his girth, he was able to be more active. At his 2 year check up he was only 29 lbs., right in the middle of the chart.

We got him into Play groups and were working on desensitizing his feet so that he would bear weight on them. Once every two weeks, a nice physical therapist would come to our house and we would encourage Cameron to get into a tub of whatever she brought. Sometimes it was cornstarch and water or oatmeal or sand. It was fun to explain to the in-laws!

At the grand age of 33 months, he took his first independant steps and it was Fantastic. I had a whole new appreciation for the actual mechanics of walking and the fact that anyone is able to do it at all. By this time Cameron was using 2 and 3 word sentences and we could see that he was bright so we just concentrated on that.

He attended an integrated preschool through the Easter Seals and it was through them that we got the diagnosis of Benign Congenital Hypotonia, so that he could qualify for services. He then went on to a school for the disabled so that he could receive his physical, speech and occupational therapy while working on his academics.

Last year I discovered this site and, upon seeing Marty's drawing, wept for the first time in a long time. I live in a large city in Canada with 3 million people and I had never met anyone like Cameron. Finally, we were not alone. The e-mail list has been a great comfort and a much needed catalyst. I stopped thinking of Cameron in terms of what he couldn't do and discovered the many reasons for the things that he did do.

We discovered the term Sensory Integration and found a reason for the fear of loud noises, the dislike of our kisses, the twirling in circles and the intense need to control his environment. We learned how to help him and we taught him how to help himself.

We had a complete psycho-educational assessment done and discovered that he has various learning disablilities, is way behind his peers socially and that he most likely has some brain damage. We are tackling these things head on and have found a myriad of agencies, specialists and truly wonderful people to help us.

We have also gone back to genetics and are in the process of getting a diagnosis of Ehlers-Danlos, a connective tissue disorder that I only found out about because of this site.

This September we had Cameron integrated into the mainstream school system and it has been a bumpy ride, but well worth the effort. He got his first report card and it was all B's. He is making friends and learning how to interact with his peers. His self-esteem is rising and he has become a much more pleasant and happy person.

We still have a long way to go and no one can tell us what the future will hold for Cam, but we have lots of hope . . . and more importantly, a long list of phone numbers of people who can help.


If you would like to write to Kris, you may do so in care of Marty.
The Benign Congenital Hypotonia Site
Contact People