Hi. This is the first time I've posted. My daughter was diagnosed on April 16th, 3 days after she turned 11 months old. After 5 days in the hospital (two in the PICU and 3 in a regular room) we brought her home again with a fresh, new, pink Minimed pump. She is such a tough little girl, I honestly think it's harder on the rest of us right now than it is on her. I haven't been ready to write anything before now, but I seem to be coming out of the anger phase and more into acceptance. Don't get me wrong, I HATE that she has this, but she does, so now we cope. The most annoying thing people say to me right now (besides the one lady that asked me if I ate a lot of sugar when I was pregnant with her) is how great it is that she was diagnosed so young. "So she'll never know any different." Really? She'll never notice that her older sister doesn't have to check her BG or count carbs. Or that other kids can go on sleepovers and play without worrying about lows. It annoys me.
The hardest part for me right now is night time. I live in constant fear of lows at night and me not knowing. How do people deal with this? Any help with that part would be appreciated.
My son was diagnosed March 21st at 10 months. He isn't on the pump (I did bring it up at his appointment today but didn't get anywhere with it). When we left the hospital I got the impression from the staff that there wasn't many kids his age that are diagnosed and so they are not sure on the amount of any type of insulin to give him. That has been my struggle. Trying to get his #s down. The lows at night are the hardest for me to deal with as well. Whenever I get the feeling that something might not be right I check. So far it has been nothing but still I don't want that one time I don't check to have him drop. I actually have not slept well at all since he was diagnosed. I know that's not much help. I have been trying to find/read about others that have been diagnosed at a young age or somewhere around my son's age and so far it's been kids 18 months or older. I signed up for this website a few days ago and didn't see many posts on here. Even though I might not be helping you, this post has helped me. Makes me feel not alone. Thank you for posting this! Good luck to you and your little girl.
Thanks for writing, Sandra. I was wondering, what kind of insulin is your son on? Since we started on a pump I don't feel like I know very much about injections. My Daughter gets such small doeses through the pump, how do you measure that? Just curious. I can say that we are really glad they went ahead at our hospital and put her on the pump. She's on the Minimed Revel (in pink!) and it's really an amazing machine. We still have to count carbs, bolus, etc, but being able to bolus her with really small amounts helps.
I know what it's like to not sleep much. There's another website called Children with Diabetes that has some other people that have younger T1 babies. You might want to check it out too. We've found several neat things (like the Spi belt and the Frio cool pack) that are working well for us.
I hope you get more restful sleep soon. Let me know how things are going when you get a chance :-)
I'm not the parent of a type 1, but was diagnosed at age 4 and can answer some of your general questions.
Pumps are ideal for infants and kids because they deliver such small doses (.025 of a unit). The base rate of insulin varies throughout the day, so pumps let you tailor it to individual needs. Then you take more based on # of carbohydrates eaten and current blood sugar. Most people use fast acting insulins like Novolog or Humalog, but because young kids are super insulin resistant they sometimes use the slower insulins like Regular. No need for the long acting stuff like Lantus or NPH.
Some parents of infants get diabetic service dogs to alert parents when a young child has a low blood sugar. Google "diabetic service dogs" and you'll find information. Most people just have to check their kids in the night. I was diabetic a few years before glucose meters were sold, but my mom could tell I was low in the night because of the usual symptoms (sweating, shaky). Your doctor should set a higher target blood sugar for a child to offer a little buffer so you can avoid most lows. If needed, it's okay to decrease pump's basal rate a bit to avoid an overnight low.
It's a lie that your child won't know the difference because he/she is diagnosed early. A person is a person. You still feel pain when you get a shot or crave sweets or want cake at a birthday party like anyone else. Thanks to carb counting and glucose meters it's much easier to be a diabetic these days. Still, your child will have some point where he or she will probably rebel against being diabetic. It's normal, especially in the teen years.
The children with diabetes website has a lot of great book recommendations. Anything marked highly recommended is a good pick. www.childrenwithdiabetes.com/d_06_b00.htm
I've had diabetes for 34 years now and have no complications. I have a young son whose not diabetic and a great marriage, busy job, and good life overall. I'm nothing special and have never been a slave to caring for my diabetes. There are a lot of us out there. Know that there is no reason your kids won't have good lives. You'll just do things a little differently and probably become REALLY good at math after all the carb counting!
Take care and be sure to share your experiences. There don't seem to be a lot of infants with type 1, so what you have learned will be a big help to others.
I have the same problem STILL. My daughter was diagnosed at almost 3 months old and though she is almost 5 now I still have so much anger toward this disease. I look at my otherwise perfect daughter and go through denial like this isn't real. Things like this don't happen to us. She didn't do anything wrong to deserve this. And then I think about her future and with every high and every low I feel such sadness weighing on my heart knowing how much it is affecting her not only today, but for the rest of her life. To think that someday she could have kidney failure, blindness, amputations, etc. KILLS me. I literally lose sleep over it constantly. She is on an omnipod now which, aside from some kinks in the beginning, has been amazing, but she still has her "bad" days. I remember how scary it was when she was first diagnosed. She was (maybe still is?) The youngest to be diagnosed here in Portland, OR and her doctor actually had to call out of state for advice. While trying to find a dosing schedule that worked for her she had 3 seizures from lows which then caused her body to go in to shock because, since she was untreated for 3 months (theat's a WHOLE nother story) her BG was 660 when she was initially checked in. It was, BY FAR the hardest 18 days of my life watching my tiny baby in ICU on a breathing and feeding tube. I have such a hard time wrapping my mind around this still. I am curious to know, how do other mommies cope/come to grips with reality about this?
I think the long term aspects of this disease are the hardest to get used to. One of the first things people ask me is, "Will she have to wear that thing forever?" It's hard to accept that you and ultimately your child will always have to think in terms of carbs and insulin. I also worry about complications, esp in a kid that was diagnosed so young (I can't imagine a baby being diagnosed at 3 months!) but all I can do is hope that we're doing the right things and trust that her doctors know what they're doing. We've been very lucky to live in a place with so much support, both medically and emotionally. Something that has helped me a lot lately is seeing older kids being, well, normal kids. Going to birthday parties, worrying about dates or even just getting good grades in school. It helps me to remember that my kid is going to get to do all those things too. I have also gotten more involved in JDRF advocacy and we did our first walk in Fort Worth this year. It was amazing to see so many people! Do you have a group there with other T1 kids? It doesn't make the hard days easier, but it makes the future look brighter to me.
I read through everyones posts and can 100% agree with everything... the anger towards it, the fact that my little boy will have to deal with this the rest of his life, no sleep because of thinking about lows during the night, etc. My son is 21 months and was recently diagnosed about 2 1/2 weeks ago. He had not been acting himself in months and finally Halloween morning I took him to the ER thinking he was dehydrated. Turned out his sugar level was well over 900. I am 8 1/2 months pregnant and having the ER doctor come into his room followed by 3 other nurses with bags of IV fluid and insulin asking me to "sit down, we need to talk" while my husband was at work, was the worst experience in my life; followed by seeing him in the PICU hooked up to machines and cords everywhere.
I am still getting use to it all, in fact today is my first day completely alone with him. (My husband is in the navy so he has 24 hour duty today.) Thinking into the future I know things will be fine and he will grow up with this being just another part of him. Its just thinking about when he goes to school and those birthday parties or sports and worrying "Did he check his sugar?" "Did he take enough insulin to counteract?" I dont want to be an annoying mom, I am just paranoid about the down-sides of this disease..
As far as the pump goes, both our doctor, my husband and I all agree we're going to wait until my son turns 3. However, it ever hurts to know the facts prior!
I don't think I answered anything but it as definitely nice o finally share "our story" with others who are going through similar situations and not jut talk with doctors, nurses and adults.
I agree on waiting for the pump. We waited until my daughter 4. I’m glad we did. There was something very comforting in being in control and I just didn’t think she was ready to wear one. Even though she has the omnipod (which is amazing) it has no tubes and no pack. Just a small pod that goes on her arm or above her bottom. Her blood sugars have been SO much better! I’m a little irritated that Oregon Health Plan doesn’t cover the constant glucose monitor though because that would be great and would help me sleep at night knowing an alarm would go off if her bg dropped too low. I wish you the best of luck with your son.