Hello everybody I am new to Juvenation and My daughter is 6 years old and was just diagnosed with T1D. It all started a few weeks ago when she started saying her back was hurting. I thought she might have pulled something or was a kidney infection. So my mother -n- law took her to the doctor for me and then in return the doctor called me and told me that she had T1D. I was so upset about it. So we was sent to the ER and where she stayed for 2 days. We had to take in so much information in the 2 days that we was there. Her sugar has dropped twice and been up in the 200's a few times now that we have been out of the hospital. At first she was scared to death and was so upset that this was happening to her. All I could do was cry. I still get upset at times. I hope to get to meet and talk to familes that have kids diagnosed at a young age. Thanks for reading my post. Tabitha
Hi Tabitha
My heart goes out to you. My son was diagnosed at age 8 almost two years ago. It is very overwhelming and scary to hear that your child has Type 1 diabetes. We cried for three days and then picked up and tried to move forward. Kids are resilient and soon your daughter will just see diabetes as part of her daily routine. The first year is the hardest and then you just learn to live and adapt living with diabetes. My son is wonderful and has adjusted remarkably. I am sure in time your family and especially your daughter will find things more manageable. Hang in there and know there are other families out there who have/are going thru the same thing…you are not alone!!! Good luck
Hi Tabitha.
Gah this doesn’t work so well on my iPhone. I’m sorry to hear about your daughter but the good news is that we are here for you when you needs us. Things will get better in a few months. The first 4 months were tough for us but now we are operating well with very few kinks. My son is 6 now and was diagnosed only 10 months ago. It gets better, so to speak.
Hi Tabitha. My son will be 6 next month and he was diagnosed a month ago. It isn't easy but we are adjusting slowly but surely and you will too. I'd love to give you words of wisdom but we are still figuring it out ourselves. Definitely read other posts and you'll see that there are so many people out who have been dealinig with this for a long time and their kids are still having a normal healthy childhood. Good luck to your daughter and the rest of your family because it is a huge adjustment for everyone.
Tabitha-
Everything is going to be okay.
It will take time to adjust, but you will. It also takes time to learn about diabetes. You know the basics now and will learn more as you go.
I was diagnosed at age 4 and am 39 now with no diabetes compications. I've earned a degree, traveled extensively, had busy jobs, and have a 6-year-old son and a great husband. Diabetes won't keep your daughter from having a job, having a family, or doing anything else she wants to do, except join the military. It hasn't been easy dealing with my disease, but it hasn't kept me from having a good life.
Is your daughter going into first grade? If you're in the US, many parents and schools now use a 504b form to clarify the student's medical needs. This site has great samples for diabetics. www.childrenwithdiabetes.com/504
I'd also recommend:
* Seek out a pediatric endocrinologist or other diabetes specialist to oversee your daughter's care.
* Next summer check out diabetes summer camps in your state. I started going at age 7 and it was the best! It gives kids a chance to meet other diabetics and have fun and also gives you a break.
* There are tons of great books available at www.childrenwithdiabetes.com/d_06_b00.htm. Any that are listed as highly recommended are great. Your library may have some of them.
* To educate your family, babysitters, etc. I really like the Pink Panther Diabetes book. You can buy it online or view free at www.ucdenver.edu/.../UnderstandingDiabetes.aspx
Take care and be sure to post any questions on this forum. There are great people here who have a lot of personal experience and encouragement to help you.
-Jenna
Hi Jenna,
I had no idea about the book from UC Denver. Very informative.
The book is published by the Barbara Davis Center for Childhood Diabetes the UC Denver. I was a patient there from age 8 - 20 and they have incredible staff and are very patient focused.
Of course as a teenager I never did what they recommended, but they still tried!
I still cry from time to time. I just hate that their so little when they get this. Did you let your son go to school after you found out that he had this? She will be going in the first grade and we think that it would be best to home school her for the 1st year of this. I would like to know what your opinion on this? Thanks for sharing about your son. :)
I don't know about Kimnewbs but we decided to keep our son in school. He would have to deal with kids after sending him back to school. Home schooling just isn't feasible for us.
He also wanted to stay in school and deal with it that way. Besides, his friends love the idea that he gets extra snacks. :)
Try to rememer that your daughter has diabetes and that it doesn't have her. Just some positive thinking. ;0)
One of the hardest things about so many kids having this horrible "THING" - we hate to call it disease - is that we're all different.
We made the decision to NOT let it rule the roost so we got back to our new normal as quickly as possible, with our focus on what's best for our daughter (Dx 2 weeks before her 5th birthday, May 2011) and for us to do everything we could to be our best. She got out of the hospital/dr office and went to swim lessons that afternoon!
She started kindergarten 3 months into it, and I have to say, that if it weren't for her school's staff including the Principal, office staff, nurse and Clinic Asst! (she's the best) and teacher, we would never been able to do it. It just so happened that there were 3 kindergarten girls with T1D and they became the 3 Insulinteers!
Homeschooling isn't something we'd consider at all and like I said, everyone is different and we've never wanted Kyra to look/feel/be treated differently or isolate us from our lives. You have to do what's right for your family. There is no time or room for guilt or should have's with everything else you're dealing with right now.
One year ago, my then 6-year-old son was diagnosed on a Monday, got out of the hospital on Wednesday, I started a new job on Thursday, and he started first grade the following Monday. It was horrible, overwhelming, and chaotic, but we made it through. I think it helped that we just had to jump in with both feet and not overthink our options in terms of schooling - and the school definitely rose to the challenge. Talk to the school, see what experience they have (my son's had basically none, by the way), and what systems they have in place or can put in place. If you are in a position where you could have homeschooled, then you're probably in a position where you can stop by the school as needed during those first few weeks. As Strmynyte said, it's good to make a conscious decision to not let diabetes and the fear of "what if ..." take over. 'Cause the 'what if' probably won't happen.
Good luck, and hang in there. It's hard, but doable.
The only reason we want to home school her is because she does not eat as good as other kids. We have to make her eat sometime or she would not eat at all. Plus she is so shy. I mean she dont want anyone to be in the room or around when she has to take her shots. If me or her dad leave to go to the store she gets real nervous. I also know that she does not do well when it comes to speaking up. Like if her sugar was to drop I just dont see her telling anybody. She has always been shy and now that she is in school it got worse. Last year was hard on her cause of her shyness. She is still going to cheerlead and do gymnastic. Thanks for everybody thought's on this. We have never been the one to say we would home school her. cause we wanted her to be involved with the rest of the kids. I just want her to be happy and know that she does not have to be ashamed of this. My heart breaks for her.
And just when you don't think you can cry any more or feel even worse for her, it goes a little deeper. I won't begin to think I know what's best for you guys. It's an ugly, horrible, terrible road you have ahead of you, but you may want to consider working with a social worker. We are fortunate enough to have the services available thru her endo and it was standard procedure to have newly diagnosed families meet with one at every visit for at least the first few months. The social workers are always available tho, whenever we want to talk to them. I can tell you that in our situation, our daughter would have used her diabetes to become quite the terror and as soon as I saw that I was parenting differently, it became much easier. We had to parent first and diabetes second. She's going to have all sorts of feelings and emotions that she doesn't know how to deal with; that's the FINE line of you helping or enabling. If you truly think it's best for her to not be around other kids and situations then your homeschooling is the decision you make. Again, it's what's best for you and your family, above and beyond all else. She's going to take her que's from you and how you handle it.
Hi Tabitha,
Please know that you are not alone and we are all here for you and your daughter! My son, who is now 7, was diagonsed with type 1 diabetes a few months before turing 3. Those first few days are scary and al ot of information is thrown at you, but it does get easier as time passes. My son was put on a horrible long activing insulin that made him crash in the middle of the day and middle of the night....it was horrible and very scary!!!! I found a new doctor and changed his medication to Lantus which does not cause the harsh crashes. Make sure you find a good doctor!!!
Today, my son is doing pump therapy and managing his diabetes has become much easier. Some days you will be able to control your daughters diabetes to the T and other days when no matter what you do her sugar levels will be all over the place. As she grows and her body changes her sugar levels will also adjust and adjustments to her dosage will need to be made.
Also, make sure you file a 504 plan with her school and go in to talk to the teacher letting her know your daughter's warning signs when she gets too low or too high.
Hang in there and feel free to contact me anytime!
Teri
terileafournier@yahoo.com
I still cry to as well but not as much as I did initially. But I have had a little over a month to have this sink in unlike you. Don't get me wrong, I was a wreck the first 2 weeks and i still have my moments but it is getting easier with each passing day. Luckly for us, our son has handled this whole thing better than we did. He is a trooper and has accepted this very well and has always been a good eater (unlike his older brother). I just pray he is as accepting in his teenage years about it. Home schooling isn't an option for us and our son went back to daycare a few days after diagnosis. He will be starting first grade in just a few weeks and I have already made arrangements to meet with his teacher and the school nurse to go over his plan for the school year. My son was one of 4 children diagnosed in a 3 month period in our town. It is scary to think about what the environmental trigger was to make 4 young kids in a small town have this diagnosis in a short period of time but at least the nurse is very familiar with diabetes so it does help us feel more at ease. As long as you are confident that the school can handle it, then there is no reason to home school her but every case is different. Do what you truly think is best for her and it will be the right decision.
Thanks TeriLea and Kimnewbs. My Daughter is doing like ur son Kim. She is taken this better then we are. I just want to make sure that we are making the right decision about school. She is just so shy. I would give anything if she was more like me and would speak up at anytime. But I am not sure that she would tell her teacher in and her sugar would drop. I know her teacher on a personal level this so I know that she would take good care of her. I really dont know what to do. I know that she is a strong little girl. Me and her Dad need to take some lessons from her. She has been so brave through this and all we can do is feel sorry for her. But I know that God will take care of her for the rest of her life!!
My son doesn't know when he is high or low yet. He usually just says he is tired or hungry and we know to check and that is when we see the off numbers. He'll learn what to look for and so will your daughter. They are still young and learning about what feels right for their body with this new change but in time they will be able to tell right way when they feel off and tell someone. As for the being shy, I guess the more you talk to her about letting her teacher or the nurse know how she feels the better. The whole thing has really scared us and my first gut reaction was to quit my job, hire a full time nurse, or put my son in a bubble but there really are so many people, young and adults, that are affected with this and they plug along just like the rest of us. I don't want him to feel different in any way because I wouldn't want to feel that way either. They are stronger than we realize and they adapt a heck of a lot better than we do. Give yourself time to think about your decision to home school or not. And give her the choice too. You can always change your mind either way. I know I was so sick to my stomach the first week of sending him off to daycare but now it is fine. And I'm sure the first week of school I'll be a mess but it will also be fine. The whole thing is truly awful but it isn't a death sentence either so I just keep telling myself that it could have been a worse prognosis and, though it is a pain, it is certainly manageable. I'll have a few more grey hairs and wrinkles because of it but he'll grow up fine and dandy. : )
Hello Tabitha, My son was diagnosed with Type 1 2 years ago when he was 5 years old. It was the biggest shock to our family. My son was wetting the bed and we couldnt figure out why until we mentioned it at his yearly well visit. They tested him and told us to go straight to DuPont hospital. We had NO clue. It was the scariest time for me as a mother. But believe me when I say it will just become part of "normal" life for you.
My son was getting injections for a long time, then we switched to the insulin pen and 3 weeks ago he started using the pump. Things are so much more normal and easy for him.
I used to get really upset about it but the only way I got through it was to think that Type 1 is a manageable disease and I just thank god that it was not something worse!
Good luck you you and your daughter and if you ever have questions just message me.
Cathleen