This post is mostly for parents of children with type 1. Since Gavi had his a cold a few weeks ago, his BG numbers have been rising. His morning numbers have been rising (in the 120's, high 130's, and a few in the 140's).They're not high consistently enough for his doctor to treat him, but his numbers today are making me thin he may need to be hospitalized soon to start treatment. Before lunch his number was 274, it eventually went down, his number before dinner was 151. But his number after dinner is scary, it was 307, and he didn't even eat that much for dinner, 2 small pieces of homemade pizza and some carrots. He was pretty angry we wouldn't let him eat a cookie before bed, so I don't know if he was over reacting because his number was high or if his number was high because he was over reacting. I know there are many people in this world who live every day with this disease (such as you wonderful people :-D), and we've known since April he will eventually end up on insulin. But we're scared to death about it, we're scared we won't be able to handle it. There are so many things about this disease that scare me. Too much insulin- low blood sugar, seizures, or even worse. High blood sugar- organ damage, or even worse. How were you able to deal with this? I know it's one of those thing where you have no choice but to do it, but how did you find the strength to handle this? I want him to have a normal childhood, to go to a party and not end up with sky high blood sugar because he ate a piece of cake. I want him to be able to eat a snack whenever he's hungry without having to poke himself then giving himself a shot so he doesn't end up with high blood sugar. He's a terrific kid and he's pretty much fine with the finger pokes, so I know eventually he will be fine with getting shots. But we're scared.
There isn't a parent of a t1 kid who isn't scared! What you are feeling is perfectly normal and we all have been there. Actually, all of us are still there a lot of the time. I wish I could tell you it's going to just be a matter of time before you are comfortable with it all.
What I can tell you, is that with time all this D stuff just becomes your new norm. You get so used to caring for your D child that it's as normal as telling them to brush their teeth or making sure he has a coat on when it's cold outside. Unfortunately the worry becomes part of your norm as well. The challenge is in not letting the worry get to you and your child. It's a difficult thing to do but, it is possible. There are tons of moms and dads of t1 kids here on Juvenation that will be here to help you during those times when the worry does get to you.
As for worrying about your child going to parties, eating a snack when he wants and not having to worry about complications of D...... There are things you will learn that will lessen your fears but, I looked at my daughter's diagnosis as a type of a "death", the death of her perfect health. With any death comes a mourning period. I had to mourn the loss of her health. Things will never be the same for her or for our family. I have reached a point where I am past the mourning and moved on to acceptance. You will be able to do that too.
So, take a deep breath. Remember you are not alone in this journey. You can count on everyone at Juvenation being here for you.
How old is your daughter and how long has she had type 1 for? What do you do/she do when she goes to parties? If she just wants to have a snack? Does she get insulin every single time she eats something or does the long acting insulin help with that? My brother's wife has been type 1 since she was 12 years old, and she 34 now, and she still sometimes has trouble getting her numbers under control. I do feel sad for him, that as much as we try, he's not going to be like other kids. He's going to have such a burden on him, and he's going to wonder why he has to poke himself and get shots before eating and other kids don't. I'm going to be terrified about him going to school (my husband and I work, so we have no choice but to send him to school, he's in pre-k). His school does have a nurse, not full time, but the gym teacher is also a RN, the principal has a son who is type 1, and one of the teachers has 2 daughters with type 1, so I am thankful there are people in his school who know about the disease. I know there are worse things that can happen. A teacher in his school has a baby not even a year old with cancerous tumor in her brain. And my coworker has an almost 4 year old daughter with cystic fibrosis. Type 1 diabetes is a manageable disease, but it's not something we wanted Gavi to deal with.
My daughter is 8. She was diagnosed a little over a year ago. She started on insulin right away via injections (you'll see it called MDI here, multiple daily injections). She started on an insulin pump this past June and that makes managing her diabetes so much easier. Yes, she needs insulin every time she eats anything. Your son will too eventually. Any time she eats she has to stick her finger to check her blood sugar and then get insulin via her pump. We calculate the number of carbohydrates in the food she will eat and give her an insulin dose based on the number of carbs and her current blood sugar. The pump is wonderful because you only have to "stick" them once every 2 days. A small plastic canula stays under the skin and the pump delivers insulin via this canula. Pumps deliver very precision doses, much more precise than can be drawn up in a syringe. Nearly all children start off on injections and then, if they and their parents want it, move on to a pump.
Parties take some planning but are very doable. Looks like your little guy is only 4 so you still have a few years before you would probably leave him at a party anyway. You will be amazed at how quickly these kids learn their own D care. Once they get competent with checking their blood sugars and giving themselves insulin it gets easier to leave them someplace like a party if there is an adult around who will help them and keep an eye on them.
It sounds like his school setting will be wonderful. I know of many parents who would give their right arm to have so many people in the school who are familiar with t1. We are very lucky, in that we have a school nurse present in my daughter's school every hour of every day. There are 3 nurses that are in the school and at least one of them is always there. They are my saving grace. They are wonderful and I know that when my daughter goes to school she is being cared for the same way as if I was right there doing it. I'm a pediatric nurse, and a very picky one at that, so that's saying a lot about our school nurses.
You are right, there is always someone who has it worse off than we do. However, don't downplay how much this disease effects you and your family. Diabetes never gives you a break. Allow yourself to be sad, be mad, be terrified and then be thankful that your child is alive and that this is a treatable disease.
If you have any questions, don't hesitate to post them. I know you will find lots of parents here willing to help as much as we can.
I have a 2.5 year old daughter who was diagnosed 2-13-2010, I know exactly what your feeling right now, We've all been there and it well eventually get better. When she first got diagnosed she was on shots for 2 months,but we finally decided to put her on the animas ping pump ,which we love. If you have any questions feel free to ask.
My daughter was dxed 12-15-09 so just over a year ago. After the initial fear and I knew she was going to live I just accepted this is it her life and mine for as long as she lets me be apart of her d-care (at least until 18 tho) I also realized I am a mom not a pancreas and even so no matter what I am doing a better job at being a pancreas than hers. Ri keeps having night time spikes she was 315 most of the night. Normally I correct her and go back to sleep for 2 hours and wake up to check her to make sure she isnt going low. Then I go back to sleep. After a while just dealing with it is possible. You learn and know what you are suppose to do and you just do it. Not much different than breathing. I dont judge myself or how I am doing based off her numbers or a1c. She is going through puberty and well there is just no point. I am doing the best I can and I know that. If damage is being done as scary as that is I know for at least today I am helping to keep her alive for another day. I cant control what is being done to her body and honestly nobody else could either. Its a on going battle but I wont beat myself up for not winning every time. Its not about winning or losing to me at this point its about how we play the game.
Whenever I'm sick my sugars are really really high. I'm not gonna lie when i was sick with strep i was taking 3 diffrent meds. and i had blood sugars of 400. If i were you i would give him lots in lots of water.
Our 11 year old daughter was diagnosed on August 23, 2010 so we are just over 4 months into this life changing journey. She has been on insulin since diagnosis so we have never known t1 without it. We still are dealing with many unknowns and stress, but having a wonderful medical team and supportive family and friends helps so much. Our pediatric endocrinologist tells us at every visit that our daughter is a child first, and then a diabetic, and to try not to alter her life any more than we have to. We have tried since diagnosis to keep everything as light as we can, and joke and find humor in things to diffuse some of the stress. Our daughter is a preteen, and friends and her social life are very important to her. That aspect of her life has definitely suffered. Sleepovers haven't happened yet but we are working towards doing that again by teaching our friends how to care for her. You mentioned having a normal childhood - your life will become a different kind of normal, everything will become second nature and you will figure out how to let your son do everything he wants to do.
I promise that it does get easier. Use this site for support, there is always someone here to listen, commiserate and support you when you are struggling. Its great to ask questions and get so many points of view. There are so many parents on this forum that have more experience with t1 that can help when you are confused. Best of luck and continue to post when you need to vent - we're here to listen :)
Our daughter went from "perfectly healthy" to having what I thought was a nasty cold or better said, her just not feeling well. Then I noticed she was thirsty all the time, she complained about headaches, she was complaining of stomach aches, and was dehydrated, among other things. Her sugar was 360 and we were fortunate enough that she did not have any ketones and was admitted to the main floor, not ICU. Our daughter went from no problems that we knew of to sugar tests (finger pricks) regularly and by the second day we were learning how to give shots. It was terrifying, and you are right to be scared. I suppose the good news and the bad news is that you have known about the problem and that insulin injections were inevitable. You've had time to adjust to the idea and time to become terrified by the idea. I don't think that your situation or mine is preferable. The long and the short of it is this: If the numbers are showing high you should contact your doctor. You do not want your child to be in the ICU. It is certainly preferable to avoid intensive care - be proactive and intuitive. If you are seeing that there is a risk or potential that the time you have dreaded may have arrived put your fears aside and do what needs to be done. Will you be able to give shots? Yes. Will your child be able to have a "normal" life? For the most part, yes. My daughter goes to preschool all day, three days a week (she is 3), she runs around in the snow and builds snowmen and rides her bike - weather relative, naturally, she even tells me before she has food that she needs her insulin (as if I may have forgotten). This doesn't mean that your life will be a picture of ease and relaxation. Despite being stable for the last month, and having just recently gotten over bronchitis, today my daughter has had numbers in the 400s regardless of having insulin. What does this mean for me? Well, we've tested and she's negative for ketones (she likes peeing on a stick, which helps). I called the doctor and we need to keep her hydrated. Are there more sick days? Right now, yes. Will I get better at this? Yes. So will my husband. Most of the time my daughter is the one who is handling all of this the best.
I feel your pain and fear. I did nothing but cry when my baby girl was diagnosed. You will be able to do what you need to do because there is no alternative. To not do so is not an option. The strength is there, it will come to the surface when you need to draw upon it, and you will be surprised by how NOT alone you are in your own community of friends. I had no idea how many people in my life are affected by type 1 diabetes.
Call the doctor and do what needs to be done. You are a strong person and your child needs you to make the call, even if the result is that right now isn't time for insulin. Be proactive, always. From my perspective it is the only way to ensure that our children do have "normal" lives.
I wish you the best.
My son was diagnosed when he was 3.5 yrs old. He is 5 now. He was on insulin from the beginning, but always very small amounts (like 0.5 - 1.0 unit at each meal and a long acting insulin of 2-3 units per day). In some ways, having your child on insulin will make it easier - for instance with your cookie situation, you would give him a shot to have the cookie, maybe with a little extra to help bring his BG down. That is more like a 'normal' kid who at least gets to eat the cookie when they ask.
You will also figure out how to handle parties - you'll just need to do a little more planning than just dropping him off and saying "Have fun!" You can either volunteer to help at the party, so you can monitor what he eats and give insulin for it - or just come back for the cake and ice cream part. I also remember that it is OK if he is a little high after a party - I can give some insulin to bring that back down.
It is normal to be scared - and you have so much extra time to think and learn about the bad things that can happen with insulin - most of us are just swamped at the hospital with learning everything so the gravity of the situation doesn't really sink in until later. So you are right, he will eventually be fine with the shots - you can try selling him on the fact that now he can eat more normally, if he gets his shot. Also, eventually you might consider putting him on an insulin pump. That is not 'normal' either - to have a machine attached to his body 24 hours a day, but it will let him eat even more normally than on shots. (It doesn't hurt to get insulin from the pump). The pump is also easier to teach to other parents or caregivers than shots - in my opinion.
I am glad you found juvenation - please keep coming back to share your feelings and ask questions.
I called his endo today, so right now I'm waiting for a call back. He had a really high lunch number, 339 :`-( For morning snack he had splenda sweetened applesauce and 1 graham cracker, so I don't know what the heck is going on now. His cold ended about a week ago, but about 2-3 days ago he started having congestion again and more coughing, but not nearly bad enough for me to consider bringing him to the doctor. the last thing we want is to go to the hospital, but I just want my baby to be okay :-(
He probably had a pretty strong 'honeymoon' which is the period where the pancreas is still working at least somewhat - not perfect, but enough to get by. It could be a sign his pancreas is not doing enough to get by without giving insulin now. I would ask if you can start with just a long acting insulin like Levemir (ask for that as it is less acidic than Lantus and doesn't burn as much when injected) for right now. THat might be just enough to help his pancreas out for a little longer. THen it would only be one shot a day. Just something to ask about - let us know how it goes.
I will let you know what the doctor says when I hear back from her.
Like what Hannah said you should give him a lot of water, check him every once in a while!!
We've only been at this for about 6 weeks with my 4 year old daughter. It hit us out of the blue, and most of the time we are doing great. I'm not sure if it's because she also recently decided to give up naps also, but we've had a few really trying days and I'm stressed. But isn't that just being a parent? Some days are great and some (hopefully very few) are just well, you just want to go and hide in a closet.
You do what you have to do, because you want what is best for your child. Diabetes doesn't change that. It's just we've all been blessed with an extra challenge due to no fault of our own. Some days it doesn't feel like any big deal and it's just our normal. Some days it's almost to much, and that's when you hide away with the lap top and talk to other moms who are in the same boat, and pray for bedtime!
Bless you, it really will be okay!
I spoke to his endo., she is going to start him on a very small dose of lantus. We have an appointment with the diabetic nurse educator tomorrow so she can train us how to measure the dose, how to properly give shots, etc. Thankfully he doesn't need to be hospitalized. As nervous as I am, I'm relieved. When his numbers are high, he is miserable, moody and cries over everything. I just want him to feel better and not feel miserable so often.