[brynnbowen]

My little girl was diagnosed as type one upon her admittance to the hospital and learning she was on ketoacidosis. She spent a week in the icu she has stabilized and we are home now. I am slowly getting used to this new life change. One thing that is terrifying me is what affect do all the highs and lows have on her little body over time? Do the numbers ever become predictable and manageable or are they always all over the place. Right now we are instructed to check her every two and a half hours. Any insight would be appreciated especially if you have had a child diagnosed so young

[littleprincess]

Hi there, our daughter was diagnosed just before she turned 2. Having to learn so many new things can be overwhelming. In new Zealand they put out a really helpful book for parents of children with diabetes. While we were in hosp getting kaitlyn stable - learning how to manage her diabetes felt like the most important study I've ever done. These forums are a good place to learn and receive support from others who understand.
Highs have no immediate risk - uncontrolled highs over a LONG period of time cause complications due to nerve damage - I find the most helpful way to describe this to people is basically - when there us too much glucose in the blood the blood gets sticky and sticks to the nerve endings building up over time and causing damage and loss of function.
Lows are a more immediate danger - lows untreated promptly will quickly cause loss of consciousness followed by coma and worse case scenario - death. That is why we need to check levels regularly and any time where our child is sleepy or clammy or so forth - you will have been given symptoms list to watch for. The only way to know for sure if levels are good is to test.
It is better to have highs than lows. And as you learn how to manage her and what to look for things will get more and more stable
There is no such thing as perfect when looking after a child with diabetes - there is too much unpredictability! Focus on progress not perfection. Be kind to yourselves and take one step at a time.

[dano]

Originally Posted by brynnbowen

My little girl was diagnosed as type one upon her admittance to the hospital and learning she was on ketoacidosis. She spent a week in the icu she has stabilized and we are home now. I am slowly getting used to this new life change. One thing that is terrifying me is what affect do all the highs and lows have on her little body over time? Do the numbers ever become predictable and manageable or are they always all over the place. Right now we are instructed to check her every two and a half hours. Any insight would be appreciated especially if you have had a child diagnosed so young

Welcome to the Forum!

I am sorry to hear about your daughter. Type 1 diabetes is manageable, with recent break-throughs it is more manageable than just a few years ago. Take a look around this forum and you will find posts from people that have had this dreaded disease from 40-60 years and they are doing great. Keep your chin up, because there is a lot of work involved in taking this beast by the horns. It can be done and you can do it. Educate yourself, read all you can. Good luck! If you have questions, just ask. There are a lot of us here that have been right where you are now.

[jjhoffer]

Originally Posted by brynnbowen

My little girl was diagnosed as type one upon her admittance to the hospital and learning she was on ketoacidosis. She spent a week in the icu she has stabilized and we are home now. I am slowly getting used to this new life change. One thing that is terrifying me is what affect do all the highs and lows have on her little body over time? Do the numbers ever become predictable and manageable or are they always all over the place. Right now we are instructed to check her every two and a half hours. Any insight would be appreciated especially if you have had a child diagnosed so young

I was diagnosed at 9 months old. While I will never know what it is like to have to deal with the stress of having a child with diabetes, I can offer some insight from the child's perspective.

The best gift my parents ever gave me was to teach me that I was Jenny, who happened to have diabetes. Not Jenny - DIABETIC. They told me that as long as I did my best in managing my diabetes there was nothing I could not do. Blood sugars are unpredictable. Highs and lows will happen, even when you do everything right. Don't beat yourself up when the numbers aren't right where you want them. Just do your best to get them back to normal ranges. From what I have been told my numbers were crazy until I was five, or so. Then they went crazy again during the adolescent years when hormones strike. Frequent testing helps make this manageable.

Ask as many questions as you can think of, and then ask more. The more involved you are with the treatment team, the easier it is to manage. Do your own research (once things settle down, of course!) and stay on top of the latest advances and research. And my best advice. Teach early, teach often and lead by example. My parents taught me early on about my diabetes. There are lots of books and resources that can help. And they always approached testing, injections, food management with calmness in front of me. Even if my bgs were way too high or low and they were panicked, I never saw it. This led to me being able to look at my own numbers and determine the correct course of action without panicking.

It won't be easy, but it can be done. And you can do this. You have already taken a great step by reaching out. Good luck!

Smiles,
Jenny

[brynnbowen]

Thank you Jenny that post was so helpful to hear from someone who has had it when so young. We are heading into two months since diagnosis and things are becoming more normal. I am curious how old you are now?

[jjhoffer]

I am 39. On July 29th I will have been diabetic for 39 years. I am celebrating my 11th wedding anniversary in two weeks. I do have some complications, but I also have some other medical conditions that are unrelated to the diabetes but can affect it. Diabetes is a crazy, unpredictable and sometimes terrifying disease. But it is manageable and it is possible to live a fairly normal life with it. I went to and had sleepiness as a kid, was on the town and HS swim team, went away to college, started a great career, got married, have a stepson and, I'm sure, drove my parents nuts along the way- just like any other kid. There is so much more known now and so many more resources than in 1972, when I was diagnosed, that I have a feeling your daughter's life will be even more normal than mine has been, so far.

[jenonen1973]

Hi. I am new here but was reading through and thought I would add my two cents. I too am a Jenny who is diabetic. While I was not diagnosed at so young an age as the previous Jenny, I have been living with diabetes for going on 31 years. I am the mother of 6?children. 3 of them are mine, 2 step, and 1 adopted. My oldest son (12) was diagnosed with type 1 at the age of 5. The other 2 children are a part of a study done by trial net, that checks for genetic markers that can be found in diabetics, and so far are not at risk. This can always change but for now it offers us some insight.

I really wanted to give you some encouraging words and tell you that while this disease is intimidating and irritating, it is manageable. The best thing I have done for my son is get him on an insulin pump. It really changes the definition of the disease. With the pump I find that the disease doesn't dictate your day, or what you eat, you do! The second best thing I have done for my son was finding a diabetic summer camp. It changed his life, his outlook, everything. He was able to be a kid and realize he isn't alone. Here are a hundred other kids just like him, having to do the same thing. It made him for once in his life normal

Hope this helps and I wish you the best of luck on this new journey!

[jenonen1973]

Ugh I am so sorry I misread the posting! I thought it said 11 year old not 11 month... An insulin pump is probably a little farther down the road for you, but it most definitely is worth looking forward to! By the time your child is wearing one they will only be better, and I have to say that right now they are pretty amazing. Camp is probably pretty far off down the road as well, but also another thing you have to look forward to. Sorry about the 2 cents I gave being so off base!

[brynnbowen]

I appreciate your thoughts. They were very encouraging. Actually her doctor wants to put her on the pump in several months. I'm quite hesitant to do that and have a lot of fear about it but I'm sure I will get to the point where I feel more comfortable with the idea. Right now she is on a very strict bg check every two and a half hours and having three meals and three snacks per day. Would the pump change that rigid schedule. She's only getting insulin at meal times. My biggest fear is the complications down the road, the unknown etc. Everyone who finds out she has been diagnosed does not help either when they talk about how horrible it is and the complications etc.

[jjhoffer]

Frequent bg testing is still extremely important on the pump. And while the doc figures out the correct basal rate, bolts rates and correction factors a strict schedule is also important to help the doc determine the correct rates. After 3-6 months the schedule eases up. The timing and amounts of food can vary. The other Jenny is correct in saying it helps to keep diabetes from dictating the entire day's schedule. The pump can be daunting at first. When I first went on one 15 years ago I thought I would never get the hang of it and wanted to give up. I didn't give up and now I barely think about it, it's second nature. Again, it is something scary at first but it is manageable. And honestly, you couldn't pay me to give my pump up. It makes my life that much better!