Discussion in 'Parents of Children with Type 1' started by Joel K, Mar 20, 2012.
Yes, yes, and yes.
I'm so sorry. My son was seven when he was diagnosed, he's 13 now. The beginning was hard, every meal took hours of planning. Now he eats what he wants, counts his carbs and asks to give himself insulin. I always double check everything, but it really has become routine. I hate that your little boy has to deal with this, but I 'm SO glad you have caught it this early. As another poster said, your son's life has been saved. Thankfully, diabetes can be treated. It is not easy, but our kids do lead normal lives. The trick is to plan ahead and to control your son's diabetes so it doesn't control him. Good luck tomorrow. -Allison
If your son asks what diabetes is, or why HE got it, what I have discussed with my granddaughter and other children who ask, is that grandma's eyes don't work the way they are supposed to, so I have glasses. Other people have hearing aids because their ears don't work etc. Her pancreas does not work so she needs insulin. They seem satisfied with a simple answer like that.
Let us know how it goes at the endo. Also, you may as well know not all medical professionals know much about type 1, including some doctors, so it is really good you are getting stated the right way, with an endo.
Yes. As an adult with T1 for nearly 10 years now, I can say that I have lived an amazing life thus far. I've had to do some restrictions over the years, but I see that more as making life choices where diabetes was thrown into the mix, not diabetes mucking everything up.
I still did sleep overs at friend's houses.
I still went on class trips.
I still was at the top of my high school class.
I still did competitive speech and debate in high school and still went to state for both.
I still competed in JETS in high school and placed first in state.
I still went half way across the country to college.
I still studying electrical engineering at university.
I still passed the Fundamentals of Engineering Exam and received the title of Engineer in Training (EIT), which only about half the people who take the exam manage to do.
I still dated.
I still got married.
I still was the leader of many academic teams.
I still traveled all over the world.
I still played the violin and sang and did music performances.
I still volunteered.
I still have friends.
All this, despite this crappy condition. I do not pity my life. I think, in some ways, it has made me live it more.
Are there some things that diabetes mucks up? Of course. You are allowed to mourn and vent. Your child is allowed to mourn and vent. Your family is allowed to mourn and vent. I'm not going to pretend that this is an easy path, but it's the one you're on now.
It will take time to adjust, but as others have said, your family will find its new rhythm. You will learn all the tips and tricks that work for your son, and he will learn to live his life to the fullest.
As far as tips for right now, just breathe and remember that you are not alone. This place is full of knowledge, and there's almost always someone on to answer questions.
If you have not already, I would start with reading some of the basic literature: the basics of what diabetes is, the different types, and the general idea of how it's going to be. Granted, as anyone can tell you, diabetes is not as easy as it sounds, and there's a lot of math involved.
Christopher gave a wonderful list of literature at one point:
When you have the chance, I'd start with the Pink Panther book. That one seems to be a favorite.
Once things settle down and you have all your diabetes supplies and doctor's orders, I would start looking at 504 plans for your son and his school, if you're in the US. While it may not seem like a big deal, this will help establish things like letting your son test in the classroom, allowing your son to eat or drink in class to help with blood sugars, and other necessities. There should be something on the main children with diabetes page linking to 504 plans, and the American Diabetes Association should also have something on them.
I know this is a lot of information to absorb, especially in a short time frame. You don't have to be a total master of it all right now. Just work on the basics first.
Edited to add: If you are on twitter, you can check out the hashtag #dsma on Wednesday evenings, 9PM Eastern. This week they are specifically talking about diabetes tips and tricks. You don't have to comment, but you can at least read all the replies if you want.
Our family and our 3 year old son Connor are in our 7th month of adjustment, but there are still difficult days. I will stop at the simplest things (like church suppers) and realize we didn't plan well enough. But it can be done, and though you won't believe any of us until it happens to you, soon it will be as if you have been managing diabetes forever.
1. DO PLAN for the hospital visit. Pack, plan childcare for your other children, handle work, etc. When you arrive at the hospital you will feel overwhelmed. It will help your stress level if you don't have to think of too much outside of the hospital.
2. PROVIDE CHOICES--one of the most overwhelming issues I had was feeling chained down to the regiment of diabetes control. Yes, it feels like diabetes takes away a lot of choices for you and your child. You must test, you must dose, yes, it involves needles and blood and other things you would never wish on your child. I felt like I was drowning, and I kept tearing up because my little baby boy didn't like the sight of blood on his fingers (we went through lots of bandaids those first weeks). He fought his first few days of shots, and I felt like the wicked witch forcing my child to handle. Yet, there was a clear moment when he started cooperating...it was when I started giving him choices. Which finger do we test now? Where do you want the shot this time? etc. The more in control my son felt, the better he handled everything being done to him. I know that you will not be able to make all the choices; some things just have to be done. But whenever possible, give your son a choice. I know it will help him feel more in control.
I'm sorry to hear about your son, and glad you found this forum so quickly. Ditto to absolutely everything everyone has said.
I keyed onto one thing in your second response - your happiness at your son's weight loss, as I can relate. My dd, always active, a healthy eater, etc. started to put weight on very quickly about 4 or 5 months before diagnosis. We were trying to find possible medical reasons behind this, and when she started to lose weight, I was thrilled for her. That's a normal reaction for us, and for our kids. You didn't do anything wrong, and lots of people with medical training (pointing at myself here) don't catch the warning signs because it's starts out subtle. You did notice that it continued too long, and took you son to see his doctor. That is all that matters.
We're a year into this. In less than a month of diagnosis, my daughter was back in the pool racing, being her normal quirky, fun loving self, with diabetes added to the mix. We all had a lot of emotions to process, still do sometimes, but there's an ebb and flow. There's a learning curve, but a day will come when you realize you've got this. New learning curves will come along (we're in one right now) but we know we can do this, and it isn't the central focus of life, just a constant part of the picture. I've met amazing people, made incredibly special friendships, as has dd. We're all stronger for it - my dd most of all. You found a really great place to share parts of that journey with - glad you found CWD!
All that's been said and more.
It's been almost a month since my 5 year-old son was diagnosed. We caught it on a Friday and, after a long morning of education Saturday, he was back in school on Monday. The shock wore off with the exhaustion and we transitioned to the new routine quickly. E's handled it very well (moment's of frustration and initial fear every time we move the injection site to another part I'd his body).
From my limited experience, having two parents actively involved in ALL aspects of the process is crucial. I can imagine doing this alone and am so glad that I have an active partner with whom I share this major adjustment in our lives.
The learning curve's steep with this. Try to get as much sleep, good food and laughter as you can
Trot out those under-utilized math skills. The most time consuming part of this for us has been calculating the carbs at meals. I've also spent a lot of time at E's Montessori school, working with the staff to help them understand the details and to make sure they are and I am very comfortable with checking his blood sugar and giving him is injection at lunchtime.
The main challenge for us at the moment is finding someone E's age with Type 1 for him to spend time with and his recent change in behavior at school, probably due in part to this big change in his life. Still working on this one.
Al the best...
Sending my best wishes your way ~ he's going to be ok!!
Thank You all On the way to hospital
I appreciate you all so much. I just printed off all the responses and am taking them with us to Cooks Childrens Hospital. Hopefully they will admit him and we can start the real learning process. I will update you all tomorrow afternoon. He kind of faced what is going on last night and he broke down emotionally. It was tough but at the same time I think he needed to go through the emotions. I was strong by then. I had my break down yesterday after the initial testing and preliminary diagnosis, but am now in the mode where I understand you just have to deal with the cards that are dealt. I think he understands that too. He is a real good kid. It was hard on him realizing that this is a lifetime thing, but he knows we are all in it together. Again thank you all so much. This forum more than anything has helped me.
It's always so sad to welcome a new member to our group...but you've found the best source of support and information right here.:cwds: You've already gotten all the best advice I might have offered...I would only add (if it hasn't been said...I didn't read every response) to go online with your son and google celebrities with type 1 diabetes...it may help in some way for him to see singers, athletes, race car drivers, and others who are not only surviving but thriving with diabetes.
I am so sad for your little guy and your family...but, as you've read, there is light at the end of the tunnel you are now entering. Don't be surprised if you go through a process similar to that of grieving the loss of a loved one...things such as denial, bargaining, anger, etc...can all be things you will feel now and in the months to come. Please know these are all things most of us have experienced...and don't be too hard on yourself or feel you have to be strong all of the time. My sister, who raised a child with Type 1 (and now has another adult daughter with it), told me to be as strong as I can in front of my son, and then go cry in the bathroom! Not everyone here would agree with that, and my son was younger than yours at dx... and it may be better for you to share some of your feelings with him so he knows he has a team around him to support him and share his pain. But remember that your son will take his cues from you. As soon as the initial shock and sadness wear off, it's important to show your son that this will soon just be a part of his every day life...yes, an annoying one, but D management is just something he has to do to stay healthy like brushing his teeth, annual check-ups, etc. In the beginning it will feel huge, but don't let it stay that way. Do your best to help your son put D in it's place so he can get on with being a happy, healthy kid...which he will be in time!
Good luck at the hospital. Be kind to yourself...:cwds:
If you are at Cook Children's Hospital in Fort Worth, you are in very good hands.
Joe & Family
Here is a great quote form a parent at a children's hospital.
"If I could, I would tell you although you might not believe it right now, you will be okay"
You will be Okay. I know. I have been through the diabetes diagnosis, twice. It is also Okay if you don't just now believe in okay.
My son was diagnosed at 9 and my daughter at 7. I know first hand the confusion and anguish of those first days. I wish I could take that away from you and everyone else who goes through it. I can't. I do respect what your family is going through. I am thrilled you found this place so fast. Hopefully we can help you through the next few days, weeks, month and in time you will be helping other do the same.
You will get a ton of great advice here. For now, probably more than you can cope with. I know all I could cope with was fining parking at Children's and I didn't even do that all that well.
One thing that helped me was a little humor. If that would help here is the embellished story.
All the best to your family,
Ben was diagnosed at Cook Children's in Ft Worth. They have a great Endo clinic there.
You are in good hands.
Everything will be okay.
and Read Badshoe's tips for New type 1 Parents.
Agreed. I'm sorry that you have to go there, but we were diagnosed there, and continue to use a doctor there, and they are all amazing. The nurses, staff, doctors, everyone... you're in fantastic hands, and I can't imagine being anywhere better in this situation.
I can't really add anything else to the conversation, just wanted to give you some e-hugs!
Remind him that he has the disease, the disease doesn't have him!
I like to think that we as a family have the disease. My son is the one on the front line but that we all will do what it takes to make sure the disease has the lowest impact as possible on our happiness as a family. My other kids will do things like wait until eating, or pause movies while he tests, just so that he doesn't take the full burden. I'm proud of them for that and it makes us closer as a family. It's not all negative.
I cant tell you all how much you have helped me through this. It has been a very steep learning curve and I still have a long ways to go I am sure, but i can now totally relate to this post above, the first I read since leaving for the hospital on Wednesday, and many many more. I truly appreciate you all because it really has helped. Ben is doing great. Our A1C ( I think thats right...very tired) was a 13.1 but his highest blood sugar since the initial 176 was last night, his first night on insulin, and that was 285, which kind of freaked me out but they assured me everything was fine. In fact they say we caught it pretty early. I am so lucky and blessed and fortunate that we caught it before he ever got sick with the ketone acid thing that I can't think of right now. All his other counts have been in the low to medium 100s.
We had our first low blood sugar situation this afternoon. We were about to go for a walk around the hospital when Ben told me that he was feeling weak. I was so proud of him for knowing to tell me already. He has really paid attention during all the education we had yesterday and today. He has listened well and had a great attitude. He is truly unbelievable and an inspirational the way he has faced this. I cant give enough credit to our hospital and their diabetes staff especially. Our Endo's have been great and the RN's are very special people whom are terrific teachers as well. I got the Pink Panther book and it is great too. Anyway's, back to the story, we checked his blood sugar with the glucometer that has been given to us in our pack. Our RN said it was fine but that they would recheck it with their instrument if our's showed low. She also told us that his body has not been used to normal blood sugar levels so he might feel week and shaky but still have an ok number (Our range is 80 to 180 right now). Our instrument showed 76, so they checked with theirs, which showed 86. He started feeling better again in 5 minutes, but we did go ahead and give him a little boost and everything worked out great and we went and played on the playground.
I was a little concerned about the descrepencies in the glucomenter and asked the education nurse about it. She said the difference was in an acceptable range and basically the instrument I had wasn't the quality of the one the hospital's has. I accept that but wonder if I should look for a better brand or something that may be closer to the accuracy of the expensive hospital glucometers. I think the one I have is something like an $80 one, but that is just what I was told and that number may have been picked out of thin air just for a comparison as far as I know. It is just something I am ignorant on right now.
Well I am tired and am going to go to bed, thank you all for dealing with my rambling and again for everything I have read so far and will read in the future. I lucked out when I happened to come upon this site while freaking out about the initial pediatric office visit.
PS I cant agree more about how great it is to have my wife be as involved as she is. I know now I could handle this alone but am very grateful I have an awesome partner to help me help my son. Mothers are very special people.
I have been sad but feel better now. I can be happy again, heck my son has stayed happy the whole time. It makes me mad and sad and all that but we realize it is what it is and we have to deal with it and we are going to get back to normal real quick, just a new normal. I know and fear about the potential for more rough times, but I have hope and faith that we can treat this right and have as few complications as possible.
One other thing
I did freak out last night. I was tired and got real confused with doing the math on the correction I was having to figure. I felt like a 5th grader at the chalkboard in school being scared and frustrated because I felt like an idiot and was just not getting it. Thankfully my nurse was patient and once I had a chart written down I was able to get it. I was right on top of it once I woke up this morning. I have to give the nurse credit, she even quized me as I awoke out of my sleep in the middle of the night when he had his 285. I said soemthing like "285!!??", in a sleepy but suprised and alarmed state. She immediatly asked me how much of a correction that was going to be and while at that time I couldn't do it right off the bat with my mind, I did grab my notes from right next to me and answered her correctly. That was the beginning of a long but successful and special day. I have been able to spend some very special time with my son and am so proud of him.
Wow that is great!
I have two other sons and I know they will be good and do things like that. At least I hope they do but I think they will and I know what you mean about being proud of them. Tomorrow night we will all be home and together again as a whole. The other two have stayed in school this week and we will all be back to school and work on Monday. Thankfully mom will be able to go his school at his lunch time as long as she wants which will help her feel better and give us more peace of mind. I think he has some nerves about coming back to his class and dealing with questions from his friends. We will be talking that out over the next few days and hopefully it goes well for him. You are all correct about the greatness of Cook's in FW and their incredible staff. My son has said more than once that it reminds him of staying at a hotel, bless his little heart. They make him feel comfortable along with the rest of us and again they are great at teaching us what to do and giving us all the confidence that we can handle this and that they will be right there to help us every step of the way. As crappy as it is that this has happened to my little buddy, we are so fortunate to be where we are and have what we have. It could have been much worse. I talked with another Father who was so strong and he was faced with his son having multiple brain tumor surgeries. My boy is alive and will be able to live a full, normal and healthy life.
This is such an important perspective. It is so unfair that our kids have to have diabetes, that it is a 24 hour a day burden. It never takes a vacation, it is your first concern on every special occasion or holiday. When your son wants to go out for a sport, you will have to consider planning for his blood sugar before you consider his skills. My son is a semi finalist in the National Geographic Bee and the first thing we think about is making sure his blood sugar is as close to perfect as we can get it before and during the rounds of the bee. Every illness is a bigger deal with diabetes. I hope you can allow yourself and your family to grieve for all of that. It is a loss of freedom to just do what you want, it is a loss of of expectation, of being able to depend on his body to just work as it is supposed to. However, remembering to be thankful that it is "only diabetes" is so important. My little nephew died two days before his third birthday of cancer. He never had the chance to do any of the stuff our kids can do. So when Gregory was diagnosed, (and still 5.5 years later) I kept telling myself that as awful and as unfair as it is, thank God it is treatable. At least our kids can go on vacation, enjoy special occasions, grow up to do what they want, celebrate holidays, etc. They just have to plan for diabetes first so it doesn't get in the way.
Ok So I thought I was good
Then Saturday it all hit me again. I am so exhasted, constantly worrying about doing something wrong. I'll give a shot and then stress that maybe I didn't see the units right. What little sleep I have had is nothing but dreams of syringes, and diabetes and then I am awake and I have to go check on him and make sure he is ok. I am still doing the 2 a.m. checks and that is good because at 2 a.m. Sunday morning I check and he is at 71 so I freak out and make him drink some juice, but I was confused and thinking I just needed him at 80 instead of 100, even though I was taught 100. Getting the emergency kits was difficult not the process but just thinking about it and I just hope to God I never have to use it. Today is his first day back at school and he was nervous and his mom is upset, but I am sure it is working out fine.
Yesterday was better because I was able to get a nap. It has just been a real tough thing to handle. I lost my first son the day of his due date and I have not been this tired and emotional since then.
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