Down Syndrome (Trisomy 21) was a serious diagnosis to hear about my newborn son when he was one day old. However, because my OB/GYN was raising his own 16 year old son with DS, I had access to the best information, resources and support from the day my son was born.
He had opportunities to grow up in the mainstream of our community as a well known and appreciated person in our neighborhood, regular preschool and elementary classrooms and community programs (gymboree, Sunday school, cub scouts, little league and soccer). Seven years later, he developed juvenile diabetes. I felt devastated by this second diagnosis.
It seems terribly unfair that any child has to face the challenge of diabetes. My son had struggled so early and so long with early intervention, physical therapy, speech therapy, and pioneering inclusion in our school district. I'm sure that if it were possible, I would have been more overwhelmed than any other mom who has ever heard a doctor say, "Your child has diabetes."
I did not believe that my son could get used to having daily blood tests and injections; I was fairly sure that I would not be able to accept that as part of our daily life.
As it turned out, he decided to make a game of guessing his blood sugar to take my mind off the finger poke. Three days after he was diagnosed, he told me out of the blue, "Insulin works, mom. I feel better."
We were fortunate that he was seven years old when he developed diabetes, and that he had learned how to count in kindergarten; to do simple math and to read in first grade. I made up a color coded list to put in with his blood test meter so that he could find his number and read the simple comments next to it.
He had an injection of longer-acting NPH insulin before breakfast and dinner that had to be balanced by meals and snacks and Regular insulin for meals. (He switched to 24 hour Lantus with fast-acting short duration Humalog with meals) Because we could not control his blood sugar very well due to his high activity level (little league and playground games) I marked 100 to 120 as "perfect" blood sugar, anything under 100 as "time to eat something" and anything under 70 as "drink juice or regular soda pop NOW." Anything over 120 was "drink water or zero calorie soda pop," and anything over 180 was "R insulin shot."
Of course our greatest difficulty was in alerting other people about his diabetes, what to look for as symptoms of dangerously low blood sugar (often the same as the symptoms of being a 7 year old boy), and how to treat episodes of hypoglycemia.
Because he had communication and articulation problems, I taught him to point to his medic alert bracelet if he felt hungry. I wrote up a one page explanation of diabetes and the dangers of low blood sugar for his classmates, their parents, and school staff, so that his peer buddies knew what to do if the grown ups around them forgot that my son had diabetes.
It was my greatest fear that he would be on his own somewhere and have sudden unexpected hypoglycemia, and that people around him would attribute the symptoms to his having Down Syndrome rather than to him having a medical emergency.
One morning at a church luncheon he had an unexpected low and would not drink juice that he needed for fast acting sugar. I took him behind a screen and told him very sternly that he MUST drink the juice. Thankfully he did just that but when I brought him to the other side of the screen there were several concerned members of the congregation who had been listening, and alarmed by my uncharacteristic tone, had come over to intervene in case I had inexplicably become an abusive parent.
They were relieved and of course immediately sympathetic when I told them he had developed type one diabetes and I was determined to avoid a low blood sugar event. It occurred to me that even when he had me nearby, he could experience a low that would be dangerous because other adults were not aware or had forgotten that he had diabetes.
It was reassuring to me that even those in the congregation who did not know us well enough to have heard about him developing diabetes were committed enough to him and our family to intervene if I did have a very bad day and could not control whatever sense of frustration or being overwhelmed that sometimes cause mothers to say or do something they regret.
Their kindness and compassion toward me in what must have seemed like a terrible situation was just what I was trained to respond with during college when I volunteered at a parental stress hotline. Until I had children, I did not understand that moms could feel overwhelmed in that way, or that it was appropriate to act with respect and compassion toward both mother and child.
Of course I needed soothing and comfort myself because I was so afraid that my son would be terribly hurt by the hypoglycemia if his blood glucose dropped further. Most people know the harmful long term effects of high blood sugar, but do not realize low blood sugar is a terrible danger every day.
My son's greatest difficulty in his preteen and early teen years was having seizures in the night due to sudden blood sugar drops, even though I always tested him between 2 a.m. and 3 a.m.
An unexpected result of his first episode of this sort was that he lost many skills he had learned at school, including his math facts and cursive writing skills. He had made steady progress in regular Tae Kwon Do classes taking belt exams with the rest of his class until he had the first seizures.
It took him a year to relearn the complicated routines and series of kicks that he had studied the first two years. Just after he earned his green belt at his first belt exam after those middle of the night seizures, he had seizures sitting right next to me after a big breakfast and an early snack.
Since I caught them early, he came back quickly, but an hour later could not get his last name right in his signature. He came to me saying, "It doesn't work, mom." He had just gone through relearning all his letters in cursive and it was very painful to tell him we would have to go through and see which ones he had lost. He just told me, "Well, here we go again."
Aside from the great amount of character and patience he had shown in dealing with the challenges of diabetes on his life, my son was a typical teen, if any 13+ year old boy could be called typical. He didn't like to be reminded when it was time for a blood test or shot or snack when he had other things he wanted to be doing.
He had the same temper and sensitivity as his 13+ year old friends who have neither Down Syndrome or diabetes. If it was possible for me to be more exasperated about my son's diabetes than any other mom of a 13 year old was, I am sure I would have been.
Research has continued throughout the years, thanks to outstanding fundraising efforts by parents and other advocates. My son is now on a daily regimen of a newer formulation of insulin called Lantus (Glargine), and counts carbs at meals and snacks to estimate how much short acting humalog insulin to inject to keep his blood sugar stable.
He has kept active in sports, developed an interest in theater and dance, and continued to have an interest and aptitude in his academic goals. No matter how closely we attempt to control his diabetes, there is a strong chance that it is taking a toll on his health.
Because he has an active life; his blood sugar is unpredictable; he has intellectual and communication challenges; is on medication that can cause dangerous high blood sugars; and he is on MDI; my son tests his blood glucose eight to twelve times each day. Avoiding one emergency event or hospitalization more than pays for a year's worth of diabetes testing supplies, and of course is well worth the effort to maintain his health, morale and mental health.
We have heard parent reports of medical professionals who recommend four blood glucose tests per 24 hour day, or fewer, for patients with the dual diagnosis of Down syndrome and type one diabetes. Mainstream parent education and support groups for juvenile diabetes can often recommend pediatric endocrinologists and other medical professionals who have a strong background in best practices.
Diabetes is a condition that causes each of us to pass a pain and worry threshold that no parent should have to cross. I never thought anything would overshadow the anxieties that the diagnosis of Down's Syndrome introduced into our lives. We need a cure.
Browse at your local library, bookstore or online retailer for
books about raising children with diabetes or Down syndrome like The Down Syndrome Nutrition Handbook - A Guide to Promoting Healthy Lifestyles
" ... Many people, and even many doctors, have not heard of antibody tests, which can aid in the diagnosis of type 1 diabetes. The blood tests measure your body’s specific antibodies related to autoimmune activity that attacks insulin-producing beta cells in the pancreas, says Lori Laffel, MD, chief of the section on Pediatric, Adolescent, and Young Adult Diabetes at Joslin Diabetes Center and professor of pediatrics at Harvard Medical School. ..."
Antibody Tests Can Diagnose Type One Diabetes in Children with Diabetes before Symptoms Develop
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This is Type 1 Diabetes - Control VS Reality
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Living with type 1 diabetes, as seen through the eyes of a father with a child with diabetes, and his son.
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Allows school staff to volunteer to be trained to provide basic diabetes care, including administering insulin and glucagon; allows capable children to self-manage their diabetes while at school.
American Diabetes Association: Legal Rights of Students with Diabetes
Chapeter 8 What Diabetes Care Services and Accommodations Should Be Provided?
CWD - Children with Diabetes Information and Support
Children with Diabetes at www.childrenwithdiabetes.com
Diabetes Warning Signsfrom Children with Diabetes Website
Back to School with Diabetes
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