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 In November 1986 I took my son Steve into his pediatrician for his 18-month check up. I was one of the lucky ones; my pediatrician stressed regular check ups with heights and weights recorded on a growth chart. After the nurse measured Steve on the exam table, she went to the growth chart to record his measurements. She then proceeded to measure him again, and this time when she recorded his measurement on the chart her comment was, "there that's better". I looked at the marks on the paper where she had just measured and noticed that the second set was longer than the first. I considered what I had just seen and remembered this had happened before at other visits. When the pediatrician came into the room, I told her what had happened and asked her to re-measure him. She did and the measurement she got was more than two inches shorter than the nurses were. When his new measurement was plotted on the growth chart he didn't even reach the bottom line, the 5th percentile. What a shock! The pediatrician called the nurse to return to the room and asked her why the measurements were so different. Her comment was "I just couldn't believe he wasn't growing".
My pediatrician immediately sent us off for 3 tests. An x-ray of the pituitary gland, blood tests to include a study of the thyroid function and an x-ray of the hand to determine his bone age. We were pleased to find that the pituitary was fine with no growths and the blood tests were normal. His bone age was that of a 3-7 month old which was shocking yet good news meaning he had extra growing time. The next step was a referral to a pediatric endocrinologist.
Over the next 10 months, we visited the Endocrinologist as requested. Those were 10 of the worst months of my life. We were accused of child abuse and neglect, thankfully our pediatrician was a friend and stood her ground against the endocrinologist or it could have been worse. Steve did not like the endocrinologist and I honestly feel the doctor did not like my son. Steve fought so hard each time the endocrinologist tried to measure him that the doctor asked me to give him two doses of Chlorohydrate, a drug to induce sleep, before our last visit in September 1987. That was the last straw! To give my son unnecessary medications just to make life easier for the doctor, I think not. I had come to hate these visits and after that I refused to return. The endocrinologist had never tested Steve for anything. All we did at each visit was measure him, talk about his diet, and leave not knowing any more than we had before. I found out later after requesting Steve's records that the endocrinologist felt that Steve was genetically short stature and possibly constitutionally growth delayed, but I was never informed of this in the 10 months of visits.
About this time an option of transferring to San Diego was offered to our family. My husband had always wanted to live there so we checked into it and decided to make the move. One major factor in my wanting to move was the opportunity of better medical care for our son. We moved in January 1988 and by February I had an appointment for Steve at UCSD. What a great feeling when the doctor walked into the room and immediately developed a friendship with Steve. After an examination and reviewing all the previous records, the doctor told me he too felt Steve might be constitutionally growth delayed, but the only way to know for sure was to do a growth hormone study. He explained how the test was done and what the results would tell us, as well as explaining the options if the results showed growth hormone deficiency. At last some hope! I finally had a doctor who liked my son and who would talk to me. The tests seemed to take forever to come back from the lab, but when they did we had the answer to all the questions we had been asking for the last year. Steve had "growth hormone deficiency" and could be treated.
Steve's treatment began on April 29, 1988, less than three months after his first visit to UCSD and one month before his third birthday. The nurse that came to our home to teach me how to give Steve his shot was very patient and helpful, even though our first shot was a disaster! As soon as I stuck the needle into Steve's leg he knocked it out. With a panicked look at the nurse I asked, "What do I do now?" Stick it in again was her unwelcome response.
We have come a long way since that first shot. Steve grew just short of 5 inches in his first year. The changes we experienced on a day to day basis were thrilling to us. The first time he was able to retrieve a cup off the countertop or turn on the light switch in his bedroom were milestones. Steve was almost 4 before he no longer needed our feet to stand on to help him reach the toilet. At 4½ he finally was able to reach the pedals on his tricycle. By the time he reached 5th grade Steve was no longer the shortest kid in his class and by middle school you could not find him in the crowd. Steve is playing high school and competitive soccer and functioning like any other teen today.
From a child who was never to reach 4‘ feet tall, to the normal stature of today, Steve's growth disorder has changed my life. Because of his diagnosis, I was involved with founding MAGIC and today enjoy helping other families of children who are just beginning the growing years.
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