Terrified
 

Hi Guys my 11 year daughter was diagnosed with type 1 3 weeks ago. Our world has not been the same ever since. Everyone on here sounds so calm I cant wait to get that back at some stage even a glimps of it. :(

cassidy98;

I can relate to your terror! My son was diagnosed with T1, at the age of ten (10), nearly twenty-two (22) years ago. If it is any consolation to you, diabetes is much easier to manage in this day and time, plus with the advent of several sugar substitutes they can have some treats. I wish you both great success and wellness in dealing with this disease.

Thanks for your response. Feeling a little better since I posted last. Those first few weeks are just so scarey. I think what got to me the most was all I kept hearing is the "forever" and "no Cure" and needles for the rest of your childs life.
It pretty devastating. So we are just taking one day at a time. She seems to be handling better than me and Dad. Im now at the "it could have been worst" stage.
Cassidy seems to be having hypos everyday is that normal??

It's weird in the honeymoon stage, which is what your daughter is in now.
Sometimes the body works with you and sometimes it works against you during that stage.

Hypos could mean that her body is still working like "normal" and that her insulin injections are contributing to her lows.

Honestly, find REALLY GOOD DIABETES EDUCATORS/GO TO THE JOSLIN CLINIC FOR A WEEK. If you don't feel comfortable with your educators, then find new ones and get recommendations.

Where are you located?

We are in Rockhampton QLD. How do you know for sure when the honey moon period is over?

Basically, the honey moon period is over when the body completely stops producing insulin. At this point the body is solely dependant on the injected insulin and you should see lows subside.

Hi Kyramom,

I get teary just reading your post. You dont really know what you take for granted until it is taken from you. Just like start cooking tea when you feel like it...gone, it has to be around the same time everynight. Just little things are now big things. Do you know what I mean?

Cassidy had another hypo to day at school. When the school call me my heart stops - thinking whats happened and how bad is it.

Where are you from? Do you have much support where you are?

When my son was diagnosed with T1 Diabetes, many years ago, we chose to have him taken to Kosair Children’s Hospital in Louisville, KY, since it was the best hospital in the State for "Juvenile" Diabetes, at that time. On the trip there, following the ambulance, I could not get the thoughts of how bad this situation was out of my head. The Diabetes wing was on the fifth floor and each day we would pass the fourth floor numerous times. On many occasions we stopped at the fourth floor to be welcomed by a smiling child, with no hair, riding in a red wagon and saying good bye to parents, while they waved and smiled as they entered the elevator. These parents, trying to maintain their composure as the doors closed, would totally break down after the doors closed. This broke my heart. I decided then and there that I was very fortunate, my child was very fortunate and his situation could have been a lot worse. Since that time, I have looked at Diabetes as an inconvenience and I have been very thankful for what I have. Today he is doing well and leads a very productive life. I hope that my story helps you in some way.

Dano, that is a great story. I've always viewed my diabetes the same way - as an inconvenience, not a death sentence. It takes discipline to manage, and certainly there are very serious risks if it's not managed properly, but like you said it could be A LOT worse.

But I do understand how it can be scary for a parent when their child is diagnosed with diabetes (or any disease for that matter). My diagnosis freaked my mom out more than it did me, and for the first few years she blamed herself for not "doing something" to prevent it. But over time she came to accept that she couldn't have done anything.

I believe that the best way to control your diabetes is through education and awareness - both on your own and with the help of a good team of diabetes professionals. A good "diabetes" lifestyle is really just a healthy lifestyle, and there's no reason diabetes should stop anyone from living an active, successful life. :)

I am sorry to hear about your Daughter :(. I hope things are starting to get better for you guys. I know sometimes it feels like it never will get better but trust me it does. :)

My daughter was just 15 months old when she was diagnosed. She is now 8 and doing well. I am not saying we dont have our issues but it is easier then when she was first diagnosed.

If there is anything you need to talk about I am here for you. Just as I am sure everyone else is as well.

Abbymac05

Thanks eveyone for your stories it makes me feel like we are not alone. Which is how we feel a lot. The school she attends feel its not appropriate that she does her insulin in the class room! They make her walk down to the office and eat by herself?? I don't know how you feel about this but I think if she is not embarrased why should they make her feel ashamed. When I approach the teacher she says that its a safety procedure?? She doesn't want to go to school any more. Not sure what to think????

I can't say that I blame her! Is this not discrimination? Can she not eat with the other children and walk down to the nurse's station to take her shot. I realize the safety concern, but why should your daughter have to suffer this cruel treatment? It seems that nothing has changed in the public schools system. I once wrote a letter to each school board member, and their lawyer, and sent the letter registered to each person. They knew by this that I had a very good case against them and it got their attention. They rectified the problem immediately. I hope you have similar results.

I was reading all the post and I'm not a parent with a diabetic child, but I am a teacher and a Type 2 diabetic. I teach 2nd grade in TN and this year I had a diabetic child in my class. Her mother, the school nurse and I had a plan on how things would work concerning testing and giving shots. She always ate lunch with her class. She would check her own BG levels in the classroom, she felt comfortable enough to do that. However for shots she would go to the nurse's office by herself, especially after lunch. There were times that the nurse was out, I would help the child with her insulin, but she would go to the restroom to give herself the shot. I never pressured her to check her BG or give herself a shot in the class, I always asked what she wanted to do and she would make the decision. I think she felt more comfortable because I was dealing with the same disease she was. She carried a small backpack with her glucometer, insulin pen, extra needles for the pen, sugar tablets for lows, and snacks. She carried this to recess, to PE or she had it at her desk or I cared for it during assemblies. The other students were warned at the beginning of the year about taking other peoples stuff and/ or looking in other people's bags, so they never messed with it.

As a parent you might want to talk to the child's teacher and the nurse and come up with a plan on how to "treat" your child; let them know what they can and cannot do on their own, educational material on how to spot high and low BGs and specifically what happens to your child when they have a high or low, how you want the child to be treated and how the child feels about being diabetic. In TN, the nurse has to keep logs on each diabetic child- BG levels, insulin units given, amount of carbs eaten and where the shot was given. My parent even got a note from the child's doctor on what she needed to have in the classroom and how to handle her highs and what needed to be done if she had a low.

I hope this gives you some insight on how a teacher works with a diabetic child and her parent. I know every school system/ district is different, but I believe that every child should be treated with respect whether or not they have diabetes.

School Management
 

I'm sorry to hear about your school situation. I was very lucky when my son was diagnosed in kindergarten. His school principal and teachers were fantastic. They did everything possible to make him feel that everything we did to manage his blood sugars during all of elementary school was completely normal and empowered him as much as possible to handle what he could on his own at that age. They let him educate the other students and answer questions until no one gave it a second thought.

We then heard some negative things about the middle school and how the principal there did not allow blood sugar testing or shots outside of the office, and would refuse to administer a glucagon shot in an emergency, etc. Another parent a couple years ahead of my son fought the school board and system for quite a while without success. I was told that the school principal has a certain amount of control over how medical conditions can be managed on school grounds and you can get a lucky or unluckly draw. I'm not sure if that's still the case, or I was given bad information, but we enrolled him in another nearby school which had a much more relaxed attitude, and never had a problem.

I would definitely find out your legal rights and do whatever is necessary to make sure your child is completely comfortable and safe in school.

Surely it is ok for her to have an ice-cream. Being Diabetic doesn't mean you have to cut any food out completely, that includes sugary treats. All it means is that you have to be careful to not have too much of them. They become a 'treat' rather than a daily food. It is the same for any healthy diet whether you have diabetes or not, everything in moderation.
I guess the only problem with children is their self control. If they have one sugary treat they will want more, but that is just a learning curve for them that they will get used to.

Hair Loss
 

Thanks guys for all your feedback. It has helped alot. I have approached the High School Cassidy would be attending next year and have arranged to talk to the Priniple to talk about a plan we can come to. Our Educator is talking about Actrapid? It would replace the morning Novorapid and she wouldn't need another shot until she came home. Has anyone have any info on this?
But my next problem is that Cassidy is lossing her hair now. This just sent me back into another mess. It has thinned very much, her hair was thin to start with and this has just brought her down again.

I feel so helpless AGAIN. I can deal with the needles the schedules but what do I say to my 11 year old coming into puberty who is lossing her hair???

Hi Cassidy

It appears actrapid lasts for upto 8 hours which is why it should last her through the school day.

Regarding the hair loss here's a few links to have a read of
http://www.hairlossexpert.co.uk/Caus...sCategory.html
http://www.cots-tri.co.uk/hairlosswomen.html

You have 2 options really. Wait and see if her new routine, insulin, diet etc has some effect and improves the hair loss issue or take her to the GP and see what they recommend for the hair loss and what tests they can do to determine the cause, as hair loss can occur for many reasons. This time in her life being stressful could easily be a contributing factor to the hair loss. Having the thyroid checked could be a start as this can be linked to diabetes and hair loss.

Source

Hope that is some help to you.

Hi my name is Maria and my daughter is now 14 but was diagnose 7 years ago and our lives have been a roller coster since. Just when things seem to be going well something happens and it seems we have to start all over again. We have tried everything we could possibly think of but she she just doesn't want to accept it. She sees diabetes as the worst thing that could have ever happened to her and numerous times she has lied about both her sugar levels as well as administering her shots. So we start all over again by monitoring everything she does and treating her like a baby. We thought we would make her feel more in controll of it by lettting her take responsibility and trusting her to monitor her levels but she continues to spiral out of control and she has gone as far as to say she rather die than to have diabetes. Me and my husband just don't know what else to do. Does anyone have any suggestion?

beba0675;

I understand your desire for information, therefore, I am not going to delete your double post. Reference can me made to this thread. Good luck in finding helpful information. :)

My 5 year old was diagnosed at 3 with type 1. And I've been a type 1 for 30 years. It's scary, and your life does change,but it can still be full and healthy! I've never allowed my diabetes or my son's to stop us. I tell my little guy when he asks why he's diabetic, it's just a part of who you are. Being diabetic requires special care, but you don't have to let it limit you. I've traveled overseas, got married, gas 3 beautiful children, and a job I love. There is hope, so hang in there.

Hi everyone,
I read the posts and I feel for you and your little ones, it is a scary scary thing.
My son was just diagnosed we are still in the hospital. I can't sleep so I am reading the books and getting all the info and resources down while I watch him sleep. We caught it on time (early, doc said). My son is 6 almost 7.
My hearts are with you all and any advice, first hand info, or comments greatly appreciated.
Heather

Heather, My advice is find a doctor you like, get all the training you can, and get connected with other parents who have diabetic children. Ask lots of questions, and let your son be as involved in his care as possible.

I totally relate to all that I am reading. My 14 yr old was diagnosed with type 1 2 months ago. He is doing so well, but I am a mess when I am not around him. School is now out, but leaving the house with everything he needs seems overwhelming. Keeping everything cool and on schedule is hard since we live in a hot tourist area with a lot of traffic that is unreliable. I know things will get easier, but I long for the days of just walking out the door for an adventure.

I know exactly how you feel when my daughter was diagnosed 4 years ago at 11 I cried like a baby. It does get better , their is a lot to take in at first and you never stop learning. My daughter struggles with being like everyone else. She is going to camp this summer for the first time. Things will get better😊