My 7 year old was diagnosed five months ago. My husband has had T1 for 37 years, and we had prayed that neither of our children would inherit the disease. Our doctor had even told us it was an 8% chance, but last August she was drinking lots of water and going bathroom a lot. It took a couple of days for my husband to finally pull out his tester and check her. We got an “error” message that said glucometer could not read because level was above 600. I took her to the ER, and we were later transported out. The positive — our stay in the hospital was less than 36 hours, her ketone levels were lower than most newly diagnosed children, and our daughter has been remarkable about adjusting to it.
However, I am waiting for the day when she gets frustrated with having to test before eating or just frustrated with everything. I am also anticipating the scary moments–like night lows (thankfully, none yet). I have a lot of fears and anxiety that come from what I have already experienced.
This weekend, she will be attending her first sleepover since her diagnosis. Granted, she will not be far from home, and I will probably be with her up until she goes to sleep.
I sometimes few different than other parents because I already have experience with T1. However, there are so many new things out there. So, I am looking for others to gather information and support.
That’s quite a lot on your plate. Is your hubby fairly independent and self-managed at this point? I ask because obviously your daughter will need to take the lion’s share of your diabetes energy, and he will need to contribute too. If you are concerned about that, some counseling would be helpful to ensure that you can depend on him to manage his day-to-day stuff as much as possible, and to help out with her issues, too.
The good side is you already have so much knowledge about this, unlike most parents of T1’s that are so overwhelmed by all the info that they just shut down about it and are unable to help. My mom was like this, just expected me to take care of things and asked how I was doing once in a while, and I didn’t do things very well when I was younger. But that’s a common story. I hope you get the support you need, and that you are able to carve out time a few times a week to just do things for yourself, whether it’s going shopping, to the library, or just going for a quiet drive to get some space from it.
Thank you, angivan! Just having someone to “talk” to helps. My husband does have good control of his diabetes. He and my daughter “race” when checking blood sugar, and then have contests over who has a better blood sugar. The one thing they are opposite at is my daughter can tell when she is low, but not high. My husband is really good at telling when he is high, but sometimes low blood sugars can sneak up on him. And it’s my experience with the low blood sugars that make me anxious of what may occur to my daughter. With my husband, I think we have had to call 911 once or twice a year–usually me waking up at night and finding him low and I can’t get him to come to–I will admit I have never used glucagon, but now that I have given my daughter injections I am pretty sure I can do it. The paramedics have always got him up and going without a trip to the ER. All things that my daughter has witnessed. I do have to say the first time she did get low it scared her, but since then she knows just to get a snack.
Every so often I do cry because I know that she has to live with this the rest of her life. I have to keep reminding myself that she will be OK–her dad has been fine. And again she seems to be handling things very well.
Hi @tphillip - I was diagnosed at age 2 (38 years ago next week) and my oldest daughter was diagnosed at the age of four in 2004. So we are 10+ years into living T1D X 2 in our house. We are pretty upfront with our daughter with the unfairness of living with T1D, but are almost always pretty quick to point out how it could be worse (I’m sure you can think of worse things - not having food to eat, or a house to live in, or a disease that made it impossible to go out and play). We try not to dwell on the negatives and have surrounded our family in the positives we have due to living with T1D - Walk to Cure Diabetes (how awesome to get 30 people together raising money for a cure, and then all get together one day for a nice 5k walk and a party after?) and now our entire family does the Ride to Cure Diabetes together - There are literally hundreds of people we’ve met and a lot I consider close friends that we only know because of T1D.
I get mad sometimes that I have to live with it, and I’m absolutely livid that my daughter does. It is a struggle to watch her go through the same things I did (I HATED for any of my friends to know, and I see it’s worse now with insulin pumps and meters), never feeling like you were normal, etc. So, I put that anger into raising money for a cure. Tooting my own horn - but along with about 150 other people I’ve organized through Walks, Golf Outings and Rides, our “Ellie’s Elephants” team has raised over $250,000 for JDRF since 3 weeks after Ellie was diagnosed. Take that, T1D!
I guess my best advice is to not belittle her feelings, and make sure your husband has a place to vent his guilt (and who knows what kind of auto-immune diseases run in your side… MS, rheumatoid arthritis, etc. that contributed), but to ensure she knows that diabetes cannot hold her back (also - don’t let it hold her back, and don’t let it be an excuse).
I’m glad you found us out here on TypeOneNation.org.
Good feedback from Katie - T1 x 2…can’t imagine! I’m glad your hubby is on top of his and helping your daughter develop good habits. I’m like your daughter, feel the lows right away but I’m feeling fabulous even at 200. In 31 years the lowest I’ve been is 45, and never needed glucagon.
Does your husband use the CGM? I don’t because I tried two types a few years ago and neither worked right, but I might try again this year. I’ve heard they are particularly helpful in alerting people to lows because they can catch when he’s trending low.
Katie–thank you for your input. My husband was diagnosed at the age of 2 as well. I know he feels a lot of guilt, but he also is a great role model.
He is on the Medtronic pump and CGM, but he is sporadic with wearing the CGM because it doesn’t work well. Telling him he is superhigh when he’s not or superlow when he’s not. I would say it works about 50% of the time.
I am so appreciative of this discussion and will write more later.
I am the only child of 2 T1D parents–mom diagnosed at age 10, dad at age 19, and me at 18 months (I’m currently 31). Having a close family member who understands and relates is probably the best thing for your daughter. I feel like my attitude about diabetes is vastly different from many I have seen in the DOC. While I haven’t always had great control, and diabetes has been frustrating at times, I can honestly say that I’ve never been severely depressed about it, felt alone, or avoided testing/taking insulin in my lifetime while I see others struggle with these issues. When T1D is a family affair, it’s just NORMAL. When I was young the 3 of us would sit around the kitchen table passing the insulin bottles around to draw up our shots. It’s also good that your husband sounds like a good role model for her rather than having a father with D who doesn’t take care of himself and teaches her his bad habits/attitude.
I would suggest getting involved in your local JDRF chapter to meet other families and kids. Also, look into sending your daughter to diabetes camp if you can. I went to camp for one week each summer for 13 years and loved every minute of it. It gives you and your husband a break from caring for her, while she has fun with other D kids away from home and learns better how to care for herself. In my years at camp, they taught me how to draw up insulin into syringes (when I was 7 my parents were still doing it for me), let me wear a trial pump to see how I liked it (filled with saline, not insulin), and taught me more about counting carbs and dosing insulin. Keep in mind that all of this happened between activities like swimming, canoeing, wall climbing, etc–it wasn’t like you sat in diabetes classes all day long (or at all).
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@tphillip My husband was diagnosed at age 24 and his sister when she was 12. So between both of them I thought I knew a lot about diabetes and management - until my daughter was dx. I watched my husband lose 40 pounds over a month prior to his dx. and I went to initial dr. visits and learned a little about management - but he was an adult and has pretty much taken care of it himself for the past 20 years. When our daughter was dx at age 7 (now she is 13), while I knew what was happening - I felt so inadequate to manage her. We were not placed in the hospital for her dx. We were sent home outpatient with a bag full of syringes, 3 bottle of humalog and lantus and a pink panther book. We had a 20 minute talk with a dietitian and were told since my husband was Type 1 - we’d know what to do. It was so scary. I slept with her for 6 months. But it got easier, it became more normal and I read ALOT and learned ALOT.
She had her first sleep over about 3 months after dx and I was a wreck - but thinking back - Im pretty sure I scared the other mom so badly as well so I;m sure my daughter was in good hands! LOL
IN the 7 years since diagnosis, my daughter has played sports competitivly, excelled in school, survived friendships, and yes she has refused to eat, forgotten to check her bg, worn her site too long, had really good A1c’s and some not so good A1cs. We try to take each day as it is and make Diabetes just another part of her life, not the definition of her life. We have a great team of doctors now who work with her as a teen with Type 1 (which has it’s own set of chaos!!) We were also fortunate enough to find another child in our town (not same school) but within a few miles who was diagnosed about a year after my daughter. She and Willow have grown up together, gone to camp together and still maintain such a closeness that does not compare to any other.
I learned in managing Willow, that my husband is a great role model but does not always do the best management either. He is human and sometimes forgets his meter, eats things that are not always the best choices and sometimes wants a break from a condition that does not take a break! We are on this journey called life and in it - we also manage diabetes - but we try hard not to let diabetes manage us! Both of them wear the Tslim insulin pump. Both have worn Dexcoms in the past - insurance wont pay currently. Willow did not like wearing 2 sites. But I find the dexcom to be very helpful in watching trends!
I’m happy to talk with you privately about what its like to be in the middle of an in-law, a spouse and a child with diabetes. Some days are very challenging. Most days are just like any other day with a spouse and kids!
I wish you all the peace, strength and support!
Vicki