What Parents with Type 1 Diabetes Worry About

January 6, 2015By 1 Comment

images900Many people with Type 1 Diabetes, who are also juggling work-life-family, may say their number one worry is hypoglycemia. For me, while yes, the thought of passing out in front of my toddler, while home alone does lurk in the back of my mind on a daily basis, it actually runs a close second to my nagging number one worry: will my daughter get diabetes.
Now any of us who had a planned pregnancy with type 1 diabetes, whether it was the father, the mother or both of you who have lived with the disease, you probably did a little research in regards to the risk your child/children may have for developing T1D. Let me remind you all of the specifics of those risks:

Information below is adapted from the Joslin Diabetes Website
According to Dr. Warram (a Lecturer in Epidemiology at Harvard School of Public Health), several factors are central to the risk question: the person with diabetes has most likely inherited a predisposition to the disease, and secondly, something in the environment triggers the disease. For the average American, the chance of developing type 1 diabetes by age 70 years is 1 in 100 (1 percent), while the corresponding chances of getting type 2 diabetes are at 1 in 9 (11 percent). Knowing what the odds are is one thing; but one can still get the disease even if he or she is not at apparent high risk
Here’s a sampling of what Dr. Warram said is known:
If an immediate relative (parent, brother, sister, son or daughter) has type 1 diabetes, one’s risk of developing type 1 diabetes is 10 to 20 times the risk of the general population; your risk can go from 1 in 100 to roughly 1 in 10 or possibly higher, depending on which family member has the diabetes and when they developed it. If one child in a family has type 1 diabetes, their siblings have about a 1 in 10 risk of developing it by age 50.

The risk for a child of a parent with type 1 diabetes is lower if it is the mother — rather than the father — who has diabetes. “If the father has it, the risk is about 1 in 10 (10 percent) that his child will develop type 1 diabetes — the same as the risk to a sibling of an affected child,” Dr. Warram says. On the other hand, if the mother has type 1 diabetes and is age 25 or younger when the child is born, the risk is reduced to 1 in 25 (4 percent) and if the mother is over age 25, the risk drops to 1 in 100 — virtually the same as the average American.
If one of the parents developed type 1 diabetes before age 11, their child’s risk of developing type 1 diabetes is somewhat higher than these figures and lower if the parent was diagnosed after their 11th birthday.

Caucasians (whites) have a higher risk of type 1 diabetes than any other race. Whether this is due to differences in environment or genes is unclear. Even among whites, most people who are susceptible do not develop diabetes. Therefore, scientists are studying what environmental factors may be at work. Genes influencing the function of the immune system are the most closely linked to type 1 diabetes susceptibility, regardless of race.

So… why am I always freaking out? Yes, I am female, my husband doesn’t have diabetes, and well, I was diagnosed before age 11 and I also had my baby after the age of 25. Now I’m really picking at the details. Here is why I am still concerned, and why I actually went so far as to check my daughters blood sugar the other day (yes, inflicted a finger stick purposely on my 2 yr. old). I only did this because trying to get an accurate reading from holding a ketone strip in a soggy diaper just didn’t seem to be doing the trick.

Exposure to viruses (environmental factors), even geological region and climate, and yes, of course genes or family history, all can contribute to ones risk of T1D. Though it is even rarer for children under the age of three to be diagnosed (mostly because symptoms can be misleading at that age) I am still a worry wart. There have even been other risk factors investigated such as length of time a baby was/wasn’t breastfed and exposure to cow’s milk proteins, exposure to gluten, and low vitamin D levels.

When I was diagnosed with T1D (at age 9), I came down with chicken pox about six months later. Now, yes, the virus occurred after the diagnosis, but what if my body was getting prepped to fight off the attack and thought “hmmm, let’s knock out these islet cells”.

While T1D doesn’t run in my family at all, and I was actually the only person in my town to have it when I was diagnosed, there are some ironic factors. Autoimmune diseases run in my family, which put me at a higher risk and therefore puts my daughter at a slightly higher risk for not only T1D but other autoimmune diseases. And then there’s that stinking case of chicken pox. While I don’t know of any research linking viruses that occur after diagnosis to a cause of diagnosis, I sometimes make these things up because it just seems logical.

My daughter turns two next month. She has had what seems like a million viruses since she was born and a never ending cold. Now, I am quickly learning that is just what happens in the first couple of years of life, especially since she is in daycare. Germs Germs Germs! I am a strong believer in what is called the ‘hygiene hypothesis’, which means that we as humans have made our environment too ultra sterile with all the antibacterial hand soaps and whatnot, that our germs are becoming immune to them and that some of the good bacteria is being destroyed. So it’s a constant balance between “Oh germs are good for your kids!” and “Oh geez, I can’t miss another day of work because I can’t bring her to daycare because she is sick AGAIN!”….and so I look like the OCD mom at the birthday party chasing her around with antibacterial wipes because she’s already been sick like thirty times this month!

Then there is the endless amount of information, assumptions, and actual research that I just unfortunately (or fortunately) know just too much about which causes me to constantly worry about my daughters risk for being diagnosed with T1D at some point. Is it rational? Some may say I have much bigger things to worry about. But that just happens to be my ‘thing’. Some parents obsess about their kid’s safety and health in other ways, and this is just ‘my thing’. I try to be rationale, and review the actual statistics in my mind, knowing her odds are slim. But, when she is going on her third month in a row with a cold and on and off fever, I can’t help but wonder. Then there was that horrible rash/reaction she had to one of her vaccines over the summer, and many of the other viruses she has had, I ask myself if they have somehow decided to hide out in her body and stand ready to attack her immune system in the worst way possible and in the most susceptible way.

I breastfed for six months, having read an article that (and it is a small research study to boot) that says there is a decreased risk for diagnosis of T1D in children who are exclusively breastfed for at least six months (and I endured extremely painful nursing all with that one goal in mind). I supplemented her with vitamin D, and was careful to watch her exposure to cow’s milk proteins in the first year of life. So why can’t I relax? It’s just in my blood. And I’m a mother, it’s what we do.

So when I took her to the doctor for literally the eighth time in the last two months, and they said yet again “no ear infection… it’s not bacterial… just viral…it will pass…” I had to check her blood sugar just to make sure I’m not going crazy. Of course it was fine, 87 mg/dl. Some of you reading this may be appalled… but when a mother’s instinct calls, she digs deeper for answers. Will I do it again someday? Probably. But hopefully the next time I get the urge, she will be potty trained and I can just use ketone strips.

The last thing you want to hear, if you’ve lived with this chronic disease for most of your life is “oh, well don’t worry, if your child gets it, you know what to do and it won’t be that hard”. No one wants their child to get any chronic disease, no matter how “difficult” or “ controllable” it may seem. I know too many friends with T1D who have had the crappy hand of cards dealt to them when their own child was diagnosed. So while we want to pray it doesn’t happen, the possibilities are a reality. Although, so is anything.

For now I will take the good and the bad germs, let her be a kid, and just keep fighting for a cure so that when we cure this jerk called diabetes, this is one worry I can knock off my list of mothering woos.

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  1. Shauna says:

    I am Type 1 Diabetic since age of 6. Unfortunately my daughter was just diagnosed with Type 1 at 19 months. We were told it is rare for Type 1 diabetic mothers to have Type 1 babies. My worst nightmare came true.

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