FOR NATIONAL DIABETES AWARENESS MONTH: A BARE BONES PRIMER ON TYPE 1 AND MONOGENIC DIABETES

I’m a lawyer and should be drafting an appellate brief. But blogging about diabetes and my two wonderful children who have it is so much more fun.

My 14 year old son Trent was diagnosed a few days after his fourth birthday. Due to my husband’s vigilance, Trent was well cared for at home. We were lucky to find a no-nonsense babysitter who, after being told Trent had diabetes, said, “OK, so I prick his finger to get blood and then what?” She took on the challenges of diabetes with aplomb. Trent was asked to leave the daycare he was attending when he was diagnosed in June 2000. As a lawyer, I learned about Section 504 and the IDEA Statute and convinced the daycare (on the campus of a community college) that they had to take him back. I didn’t really want him to return, but I wanted to prove my point. I was subsequently able to use Section 504 to get him enrolled in a public pre-k program. With Trent on the pump in August of 2000, we faced another legal situation with the public school. However, with some ingenuity, and help from Crystal Jackson at the American Diabetes Association, we worked through that as well.

Now, ten years later, Trent is a freshman at a selective public high school. Here’s what I have learned in the ensuing 10 years since diagnosis:

1. ChildrenWithDiabetes.com is the best place for support and information on the internet or anywhere else. (See the parents’ list and message boards and chat rooms and conferences.) Someone at CWD has certainly experienced what you are going through with regard to your child’s diabetes and can point you in the right direction for help (including referring you to the right people as I was referred to Crystal Jackson).

2. You do not have to wait to have your child placed on a pump. 10 years ago, it was very rare to have a newly diagnosed 4 year-old on a pump. We were told by the endo that we had to wait until we learned how to use insulin. We told then endo we would find another endo who would prescribe a pump if she didn’t. She prescribed it. It is now routine to prescribe pumps for newly diagnosed children. This is a good thing. Contrary to the “old school,” it is just as easy to administer insulin through an insulin pump as through needles. It is just a different delivery mechanism. A mechanism which, by the way, makes it possible to administer the tiny doses of insulin that toddlers and babies require, and that allows for basal rate patterns to more closely match your child’s needs.

3. I had been very hesitant about pumping. I didn’t like the idea of seeing my beautiful baby hooked to machinery; it made diabetes so much more visible 24/7. My husband was insistent and I am glad he was. It means you don’t have to force a fussy toddler to eat when he doesn’t want to and allows him to eat whenever he wants. This has to be good in terms of avoiding “issues” with food. Moreover, when your toddler arrives at school with medical equipment that is more expensive than your car, the school takes notice and believes diabetes is as serious as it is.

4. You are lucky if a parent or a babysitter is able to help with diabetes care. My family was always uneasy with helping. I was lucky to find a babysitter. If you can’t find such a person on your own, go to ChildrenWithDiabetes.com and find someone in your area with a child with diabetes and give each other a break. You will need it. Don’t turn down help.

5. Learn your rights in school and learn about Section 504 of the Rehabilitation Act and the Individuals with Disabilities Education Act and the Amended Americans with Disabilities Act. You may need to become a legal expert to advocate for your child. I used Section 504 in a very unique way. Section 504 requires a public school to make reasonable accommodations for a disabled child. There is no description in the law that says what those accommodations are, except that they be reasonable. So, when Trent was diagnosed in the summer before pre-k and I had not had him tested the prior year for the gifted school, I asked that they test him for the school late as an accommodation. I wasn’t asking them to admit him if he didn’t meet the academic requirements; only that they test him out of sequence. They did. He was accepted to our gifted school and I didn’t have to send him back to where he was not wanted.

6. After diagnosis, take some time to grieve. Your child will be OK, but you will need to grieve the realization that you can’t protect your child from everything. Believe that with time, while it won’t get easier, it will become a new “normal.” Don’t forget to take time to care for your children without diabetes; the diagnoses will require sacrifices and grief on their part as well. They also need special attention.

You may find that diabetes actually brings good into your life. Don’t be surprised. For our family, we have learned to eat better and become experts on nutrition. We have made friends that are as close as family. We even adopted a baby daughter with diabetes.

WHICH BRINGS ME TO MY NEXT STORY:

My husband and I had two children by birth, Trent and Michela, but were never able to conceive more children. We loved our two, but always hoped perhaps to get pregnant again or adopt. When we heard about a baby through a contact at CWD who had diabetes and was in foster care in a neighboring state, we immediately called the social worker. Considering the state of the foster care system in this country, everything went relatively smoothly. We learned about Maya in August 2007, had supervised visitation with her, and were lucky to have her placed in our home within two months. Thus, she came to us when she was only 9 months old. (Being a lawyer helped again; I pushed through the legal requirements and even stretched a few to meet our needs.) My husband and I became foster parents. With our children, then ages 10 and 8, we were all thrilled to have Maya in our lives. In December 2008, we adopted her and officially became a family. We continue to have good relationships with her biological family through an “open adoption.” It is appropriate that November is both the official month for raising awareness of diabetes and adoption!

Maya was diagnosed with diabetes at the age of one month old. Her mother brought her to the emergency room in a state much like Type 1 ketoacidosis. She was life-flighted to a university hospital. When we brought Maya into our family, we believed she had Type 1 diabetes. She came to us wearing an insulin pump strapped to her back as she crawled. Being a part of the online diabetes community, we had learned that infants who were diagnosed with diabetes under six months of age might have a rare form called Monogenic Diabetes. It is a form of diabetes caused by a mutation in a single gene; an inherited gene or a gene that mutated in utero. Because none of Maya’s biological parents has diabetes, we know that her gene mutation (a mutation to the Kir6.2 subunit of the KCNJ11 gene) must have occurred in utero. (Thanks to Professor Hattersly in England for discovering monogenic diabetes.) We had her tested (a simple cheek swab) for the genetic form of diabetes and discovered that she had it. Over the course of a week in the hospital, we witnessed a miracle in the making. As the doctors decreased her insulin and increased doses of glyburide (an inexpensive type 2 medication), Maya became independent of exogenous insulin. (Thanks to Professor Philipson at the University of Chicago for guiding us through the transition.) Today, we only give pills to Maya to control her diabetes.

We feel as though we are the luckiest people on the planet to have adopted the daughter we always wanted and to find she has a form of diabetes that is easier to treat.

So, if you are newly diagnosed, be prepared for the unexpected. You may find joys you never imagined.