Hi all! I am new to Juvenation and new to T1D. My 13 year old daughter was just diagnosed last Friday, 1/27/12. I took her to see her pediatrician after being sick for a couple of days expecting him to reassure me that she just had a stomach bug of some sort. Boy, was I in for shocker. He sent us immediately over to the hospital to be admitted and there we spent the weekend in the PICU. Today is day 2 since we came home and so far, so good. I am amazed at how strong and brave my daughter has been through all of this. More so than I can say for myself. I still have my moments of breaking down and feeling so extremely emotional about it. Wondering why her and not me instead. Anyone have any advice for this emotional Mama?
It's going to be okay. You'll learn a lot and gain personal experience and your daughter will figure out how to fit diabetes into her life.
I've been diabetic most of my life and am about to turn 39. I went to college, have had busy jobs that required traveling a lot, married a nice guy, and have a beautiful son. After years of bad to mediocre control I'm in a good place with my diabetes an am complication free. Hope that if my son has kids someday that I can retire and take care of grandbabies.
It's important to have a doctor you like who is a pediatric endocrinologist or other specialist working with type 1 kids. Ask your doctor about diabetes summer camps too. Will be a great way for her to get to meet other diabetics.
Virginia Loy wrote a book for parents. Their family goes a little over the top (her 2 diabetic sons packed coolers with snacks and took them everywhere they went and had car refigerators for snacks and to keep insulin cool) but her attitude is good and they are an example that we all deal with the emotions and day to day diabetes management differently.
books.google.com/.../Real_Life_Parenting_of_Kids_with_Diabete.html
This giant list of books my have something you like too.
Hi Antonette,
Welcome to Juvenation (unfortunately), you are in good company.
My son was diagnosed November 21st, 2010 one month prior to his 9th birthday. I myself am also a Type 1 diabetic so I do have more experience than the average parent. However, I know how overwhelming the diagnoses can be and feel free to ask any questions.
Most people will say it takes about a year to really get used to everything but I know you will get the hang of it.
It can be very stressful with having to be the one responsible for managing the diabetes but take it one day at a time.
Kids are very resilient and I am VERY proud, impressed and amazed at how well my son has adjusted. Just last night as I was giving his nightime shot and it burned a bit he just grinned and moved on. It made me realize how he just sits there and takes his 5 shots a day and never complains.
Good luck to you and your daughter.
Just a note that there is another website called, "TuDiabetes" that is excellent as well.
Take care,
Jodi
Hi Antonette,
I am fairly new to this all too. My 3 yr old was diagnosed 3 months ago.(18/11/11) I am a nurse and realised how little I actually knew (or appreciated) regarding diabetes management. There is sooo much to learn when you deal with it daily to keep your child healthy. I agree with Jodi about being in good company!! Lots of good ideas and encouraging words here for sure. It helps to talk with others going thru it too. Not so much misery loves company, just comradary. When you are feeling overwhelmed or feeling like you are doing a crappy job , there are so many ppl here that remind you that you are doing a terrific job and its not something we signed up for, but they know what you need to hear. Both Jodi and Jenna are fabulous resources(thanks girls ;). I guess in my short 3 months of experience all I can tell you is that the honeymoon period totally sucks! (I still think it should be termed the torture period) Its just really unpredictable. My daughter is coming out of it now (I think) so we are making frequent adjustments to her doses and am happy to report that after an ugly last 2-3 weeks of too many highs, I just tucked her into bed after a perfect day! A literal and figurative sigh of relief!
Someone said this in another thread and it kinda hits home:
"It's really easy to get caught up in EVERY high or low and feel like you're not doing your job. But the fact is, we're attempting to perform an impossible job. We cannot "be" a pancreas. We can only do our best to mimic the incredibly phenomenal, mind-blowinging complex thing that a pancreas is. Every hour of every day. "
Best Wishes,
Jen
Hi Antonette
our 8 year-old son was diagnosed about 15 months ago and it was a massive shock. I remember at the time talking to a mom of another kid with diabetes on the phone and being amazed that she was on vacation with her T1 son without her husband, and thinking, how can she possibly handle the diabetes by herself? The amazing thing is that it just becomes part of your new routine. It's hard to believe in the first weeks and months, but it will become part of the pattern of your life. That's not to say that I don't still experience moments of horror at the burden that my son will have to deal with, possibly for his whole life, but the bottom line is that he is a happy, healthy (except for the T1) kid, who ultimately can do almost anything that any other kid can do, although of course it requires much more attention from us than other kids and parents. Don't beat yourself up too much about the highs and lows. There will be 50s and 400s that you won't be able to avoid, no one can. Anyway, you will get through the early days and your life will return to some semblance of what it was, although that's hard to believe that now.
I'll also say that it is hugely comforting to be able to talk to parents of other kids with T1. I don't think anyone other than a T1 parent or someone with the disease themselves can really understand what a huge responsibility it is, but we understand and empathize.
take care,
Bruce
Thanks everyone for your encouraging responses. Right now, we are having more good days (emotionally) than bad, which I think is good. When we went to her first follow-up endo appt one of the questions she had to answer was on a scale of 1-10, how are you feeling about having diabetes (1-I'm 100% ok, totally adjusted and 10-I absolutely hate it). She answered with a 3. I was so relieved to see that. Then, that same evening we were getting ready for dinner and she started refusing to take her insulin. Back to square one for me where I feel like I'm failing as her mother at helping her adjust. Last night, her blood sugar was high and she had a small amount of keytones so I had her increase her water and followed the correction information they gave us... all of this with a fight. I don't want her to end up back in the hospital so I wanted to yell at her and force to her to cooperate but at the same time, I understand how scary this is for her and don't want to make things worse. After carefully discussing the repercussions with her, she finally gave in. Today, we're back to having a really good day. We even went to school to get all the work she's missed since she's been out and find out what we need to do to prepare for her return on Monday. AAAHHHH! Why do I feel like I'm slowing spiraling out of control?!?!?
After 7 months it is still hard. Best thing I ever did was start a support group - totally helped me to hiave others that I could talk to because we all go through the same thing and can have some great advice or just a shoulder to cry on or a hug when you need it. I also started a blog if you want to read and see we all go through the highs and lows too! www.mod-maryland.blogspot.com.
Meant to say - good luck and as everyone says it will get better.
Hello, Antonette,
I know exactly how you are feeling. My 13 year old son was diagnosed July 1, 2011. Those first few days were filled with guilt. I remember standing in the rain in the parking lot of the hospital crying my eyes out and cursing God for doing this to my son. I know everyone says it does get better. I really didn't think it was going to. Antonette, it did. From day 1 my Michael was a trooper. Learning to check his sugar, giving his own shots. He was great. Until the rebelling started. He would refuse to check and just eat what he wanted. He would lie and tell me he took the shot already. ugh. I had to stress to him on several occasions that this is the way it is and we need to handle this the best way we can or he will die. I also listed all the things that could happen to him if he doesnt take care of himself. I had to put it very bluntly to him or he just wasn't going to get it. It wasn't till the 2nd week after the diagnosis that he finally broke down and realized that he is going to have this for the rest of his life. He and I had a good cry together which was in my opinion exactly what we both needed to do to release the stress. Since then he has been great. We are learning as we go. There are high days and low days. We were fortunate enough to have the summer break to adjust to this before school started and once it did our school was really great in supporting anything he needed. We also have a great Endo and his nurse are available whenever we need anything. I am by no means saying this has become a walk in the park but it has become more apart of our daily routine. I have my share of arguments with him on a daily basis. Remember, they are 13. Puberty is in full effect. They want to argue about everything. Some days i have to shout at him to pick up his clothes off the bathroom floor 16 thousand times let alone check his sugar and take insulin while i am cooking just breakfast alone. I cannot imagine the fighting in the house with a teenage girl. God gave me two boys for a reason. Its hard raising them without the disease. I think in some ways, and i have told my son this, that maybe he has diabetes for a reason. Maybe he is lucky to have gotten this because it is forcing him to eat right, exercise and maintain the best health he can have in the most influencing years of his life. I know right now its hard to see the up side of this but believe me there is. I didn't find this site or speak to anyone till just a month ago. You are already lucky to have starting talking to people now. We are all here for you if you need an ear.
trish
Hello, Antonette,
I have a 14 year old daughter, diagnosed a little over 2 years ago. The "honeymoon" phase was just that, but when the honeymoon was over...we hit a brick wall for just about a year. She really rebelled; not wanting to check her numbers, not taking her shots, tried just eating proteins, didn't want to tell too many of her friends what was going on, she got sick a few times and would still continue this crazy behavior. We started going to group counseling sessions that her endo created for teens and parents and they have done a world of good! The teens meet in one room and the parents in another. I needed the support too and I know she did too. She is really handling it much better and is happier, finally. I'm sure we'll still have rough patches, but now I have Juvenation and the support group to ask for help. Make sure you set up a support system for both of you. We take it a day at a time...
Lisa
I'll never forget how jarring our T1D diagnosis was. Getting inundated with so much medical info at the hospital, online and from books made our heads swim. The emotional heartbreak at that time was devastating and sometimes I even still feel it now - 15 years later (www.daddybetes.com/.../diagnosis-deja-vu.html).
All I can tell you is that you'll never believe the courage and stamina you'll be able to muster for your daughter. And you'll be amazed not only at your own strength - but your child's as well. You've got a whole community here at Juvenation rooting you on. We've been there, Antonette; we'll be here to support you- especially when it's emotionally difficult.
I learned very quickly to not worry about the future or I would have sunk into depths I might not have recovered from. Worry about today. It will be enough to keep you busy.
Hi, Antonette.
Your daughter was diagnosed on the same exact day, but one year later, from my daughter. She was diagnosed in a similar fashion as your daughter, but required a trip to the emergency room. It is terrifying, frustrating, overwhelming and heartbreaking when your child is first diagnosed with this disease. There were days she fought the treatment at first, crying and arguing, sometimes trying to refuse the injections. She was nine at diagnosis. We were all anxious. The anxiety has pretty much gone, except in moments of illness. No one ever wants to see their child so ill. The day-to-day process does get better. It is not an overnight process. It takes time, and, occasionally, we regress to the ugly moments at the beginning. But it has gotten easier, if not better.
Thank you to Jenna Grant and Jodi for the information of books and websites.
It will be two years since my then 9 year old daughter's diagnosis and things have changed around the house. The house is more of a mess, and the yard isn't kept as nice either.
It's been 16 months since my then 11 year old daughter was dx'd......it was chaotic at best. I, too, am a nurse with trauma and critical care background. It's one thing to study it, but it is completely different to live it. Emotionally it has been tough....but as time goes on we all settled in for the ride. I understand your emotions....and I can relate to all the posts....you're not alone. One day at a time truly is the best we can do.
Keep in touch....
Ann
Hi Antonette,
My daughter was diagnosed 8/31/2009 just shortly after her 9th b-day. Luckily for me, she took the news like a trooper because I was bawling like a baby! She had just stared 4th grade, moving out of the elemenatry school to an intermediate school. After our 3-day hospital stay she went back-to-school in a show & tell type mode. She took her new diabetic bag to school, got up in front of her class & told everyone about her diabetes. She even showed off her new insulin pen! I was so proud of her!
Then this past year she has been in a phase where she doesn't want to have diabetes any more. She doesn't want to prick her finger, and now that she is on the pump she doesn't like to change her site either. I don't blame her. I hate this disease too. After her A1C went from an 8, to 9.6 to 10 this past December, I was begging for help to get under control. We were connected with a therapist that has Type 1 herself and started going to see her regularly.
We are also involved in our local JDRF chapter & just participated in the Walk to Cure Diabetes. Her school even got involved, sold paper JDRF sneakers & let us send out invites to join our Family Team. She had over 100 walkers show up just for her that day. What a great way to show her support!
With a lot of hard work on her part & a little bit more "management" on my end, she is getting back on track! Her A1C in February was 8.6! I was so relieved to see it go down. We download her pump on a weekly basis to the Joslin Center & make adjustments as needed. The dowloads show every b.g. check, carbs eaten, insulin taken, everything she does with her diabetes is recorded. It has been a wonderful tool for us and by downloading each week it makes us all accountable for her health. I'm not saying the pump is best for everyone, but it has made life easier for us.
Hang in there! You aren't alone! As for the emotions, it does get easier. It took me a solid year before I could talk about her diagnoses without tearing up!
Take care,
Sandi
Our son was diagnosed just 5 days before Halloween this past year. We went to the pediatrician thinking he was having a reaction to his medicine only to get the shock of our lives. What started out as a possible allergic reaction ended up with 2 days in Children's Hospital, with 2 older daughters at home 2 hours away. He was worried about being able to trick-or-treat and we were worried about how this would affect the rest of his life.
One thing that has helped me is to make a binder with the nutrition information of every restaurant and fast-food place in town printed out (left in my car), so that if we're suddenly craving Taco Bell, we can run by and not worry about "how much is this, or what about that?" We'll have it right there and he can choose what he wants and we don't have to guess at his insulin dose. When he was first diagnosed, restaurants started off being the first scary thing to overcome. He's been really good himself.
As a newly-diagnosed parent myself, I can tell you with all honesty that it WILL get better, a little bit at the time, but the emotions will always be there. I spent weeks crying whenever I thought my son wasn't looking. Now, I only do it occasionally (like now). I'm TRYING for his sake, to not wrap him in a protective bubble and keep him by my side every single second of the day, but it's hard. He just had his 11th birthday this past week and had several boys spend the night. An all-nighter complete with cake and ice cream. His dad "camped out" in the living room with him and the boys, and I checked his b/g levels every two hours after he went to sleep. I'm even planning our first "vacation after diagnosis"...to Orlando of all places. I haven't figured out yet if it's craziness or just stupidity on my part, but I'm trying not to let his diabetes rule his life. We talked about the Harry Potter park before he was diagnosed and I don't want to take that away from him just BECAUSE he was diagnosed. Even though in all honesty, and I'll never tell him this, just the thought of it terrifies the daylights out of me.