Day 1 of diagnosis

(Martha) #1

We were just diagnosed and it is very surreal. My daughter is 10 and I am so nervous about dealing with her eating at school. And just nervous in general! This is a whole new normal I was not prepared for and know in time it will become easier. But it’s so scary! And the more I read the scarier it feels :frowning:

(Mayra) #2

Hi sorry about your diagnosis … my daughter was diagnosed a week ago … I’m scared … and I just hope the best for us and our daughters

(Mayra) #3

Hey guys tomorrow will be a week since my daughter was diagnosed , this is still new to me and I’m still scared but I’m no longer hopeless… if I don’t have hope for her who will… thank you guys I read a lot of these post and I now have hope… I’m still sad but we will all beat this some day and a cure will be found !!! Be positive and love the life you are given … no time to dwell and be negative … Lisabella will live a long and normal life because I will contribute to that … she’s my daughter and even if we are all scared we also have the will power to fight for who we love !

(Dennis J. Dacey, PWD) #4

Hi Martha @RachelsMom,
Certainly you were taken by surprise and now are scared for her and concerned that you may not do what is right for your daughter Rachael. I know my parents and siblings never heard of diabetes before I was semi-comatose and hospitalized for a few weeks while trying to figure out how to get me back on my feet - but that was over 60 years ago and in the long run everything is going ok and I’ve had a very full and active life. In those days there were only medical books that I could [try to] read anything about diabetes.
A suggestion I have for you and Rachael is to ask your family doctor and pediatrician to recommend for you the very best medical care team for her - keep in mind that not all doctors know that autoimmune onset / TypeOne Diabetes needs to be treated differently from the more common forms of diabetes. Then when you get a referral, carefully question the doctor [preferably an endocrinologist] about her/his experience working with T1D.
Another note, there are tons and tons of “diabetes” related postings for you to read - be very careful what you choose to read because there is so much “junk” being posted; just recently a couple of postings had to be removed from this site.

Martha, welcome to this site and please feel free to ask any questions you may have - there are many people here who will offer you encouragement and share with you positive insights they have learned while living with diabetes. Let Rachael know you love her and that you are on her side while she learns to live with T1D - and let her know that there really isn’t anything she can not achieve in life because of diabetes. Best wishes for you and her.

(Martha) #5

Thank you so much. I am Choosing to not read a lot of posts because of the scary nature of a lot of them. We are still in the hospital and hoping to leave today. I have A good doctor lined up but luckily we live in an area with amazing doctors to choose from so i feel Like we will be in great care. I also Have been given so many names of local moms who have children diagnosed and i can Already tell they will be a wonderful support. We are preparing for the new normal and I know how hard this will be. I appreciate You taking the time to reply. I need To hear the positive along with the reality!

(Shelly) #6

Our 13 yr old daughter was diagnosed on Nov 2nd. We are adjusting and she has been amazing. She checks and corrects like a champ. She calculates and doses on her own. We have always packed lunches for our kids (4). We now itemize the carbs on her lunch lunchbag so she doesn’t have to take the time to figure it all out. We are fortunate to have an amazing school nurse. Our daughter checks her levels 3x’s a day, between classes, with the nurse. We have downloaded the MySugar app on her phine. This synchs with her glucometer. The endocrin, my husband and I have access at all times. This is wonderful for peace of mind.

All that said, it is the emotional side that is extremely difficult for our daughter. Her self worth has taken a huge hit. She struggles with feeling loved, whole, valuable, pretty, etc. I just joined this site in hopes of finding ways to support in this aspect. She cries a lot. Entering her rough teen years with this already weighing her down is going to be so difficult.

Best of luck to your family as you begin your journey.

(Caroline) #7

My 9 year old daughter was just diagnosed on 12/21. We are in the same boat. Trying to take all of this in and get ready to go back to school with a new “normal” after the break.

(Thomas Byrne) #8

You can pack a lunch for her instead of having her guess the lunch meals provided.

(Danny) #9


I just replied to your post about your daughter’s new diagnosis. After reading your comment here, it looks like you have a TERRIFIC start to dealing with your new situation and turning negative emotions into positive ones. CONGRATULATIONS! Keep up the good work.

(Danny) #10


You have taken some wonderful steps to dealing with your family’s new situation (posting here and collecting local contacts). My only advice would be to meet as many people face to face as you can and feel absolutely free to ask any question you have. It is my experience that most of those either with T1D themselves or those who care for someone with T1D are more than willing to answer questions and share experiences with people like you and I.

(Martha) #11

Thank you, i have been meeting some wonderful helpful people over the last couple of days and agree the face to face is so important!

(dsrn0923) #12

I am coming from a different persective. I am a school nurse. I can hope to reassure you in telling you that there is so much the school can do to help. There is no guessing at carbs on the school lunch because the vendors now have to provide the school with that information. I have 2 students at my school who are newly diagnosed and dealing with the transition smoothly. They are comfortable now and learning how to calculate their own carbs and administer their own insulin with my assistance. As parents, we are more scared than our children. Trust me when I say that they are resilient. I am amazed at how well they adapt. Just be as supportive as you can and what you don’t know, ask questions. Good luck with everything. If there is anything I can do to help with the transition, please feel free to contact me. Eveything will be fine in time.

(christy) #13

Martha, I am so sorry. Hugs. Take a thousand deep breaths as you have this. My son is 12 and has had it since he has been 3. Is it easy, no; but it will become just another day in your life. Let your daughter take as much control of this as she can as that empowers them. School lunch is disgusting to begin with even for those who don’t have DM1. In the beginning I did everything like the books tell you, no sweets, no junk, etc. Then I did realize this is life. Everyone is going to have some junk, moderation is the word, treat with insulin. Take one day at a time. Keep talking to people that know what it means to be DM. Type II don’t count as they have no clue what our life is like. keep posting on here so people can encourage you, give computer hugs, etc. Sometimes reading too much at first is too frightening. Put some of that off for later and just concentrate on keep sugars good and you guys mentally healthy! I haven’t stopped doing one thing in our lives, in fact probably do more now, and my son’s sugars can go from high down to 35 in seconds. You will learn your child’s symptoms of highs and lows. I am really sorry you guys are going through this. Give her all the praise you can. Never use the word bad numbers. It is what it is. Hugs girl!

(Bruce Johnson) #14

Sorry for Rachel for the diagnosis and feel sorry for you having to confront this disease so suddenly. I agree you need to try and avoid some comments that I think are just T1D’s vetting their frustrations sometimes. We all do it. I have had T1D for over 50 years and also grew up with a younger sister who was a T1D and you know my parents adapted to it and also continued to work each day, so I know it can be done. Not that long ago a young family I know were faced with the same thing you are experiencing now. There 5 year old son was diagnosed with T1D and they felt very lost and worried at first. Naturally they approached me for some advise and I did help them a bit by babysitting their 2 boys when they both needed to be away . I remember the first thing I advised them about was they needed to get involved as much as possible with local diabetes support groups. It is there that they realized they were other parents that were in the same situation or had been before… Also support groups provide a positive outlook and meeting others in the same or similar situation you are in almost automatically gains you new friends that you might not have met otherwise because you have something in common. I live in a community of approximately 140.000 people and there is actually a support group here that is for parents of T1D’s specifically. The other place not to ignore is your local health care facility. Most of them have professional staff that are used to dealing with the parents of a newly diagnosed Type 1 diabetic. You have a new thing that you are going to learn about and experience as the caretaker and also assisting you daughter to become more independent in managing the disease. I used to be a councilor at a summer camp for Type 1 diabetics ranging in age from 5 to 18. I have met many parents who feel very overwhelmed and have trouble dealing with their child’s situation. It is important for the parents to realize it is not only their child who suddenly has to make changes to their lifestyle but it is the parents, other family members and friends as well that need to do the same thing and it will not always be easy but the challenge is overcome by mostly everyone who has been put in the same situation. The best way for parents to deal with this new “living with Type 1 diabetes lifestyle” is to first remember to take good care of themselves. There are a lot of new challenging things you will be confronted with as T1D management has improved greatly with new technology popping up all the time. The new technology is usually always making management of T1D easier for the person with the disease. My mother had problems adapting to raising a young Type 1 diabetic and I always remember how she finally was able to give our daily insulin injections. My younger sister (3 years apart) was diagnosed at the age of 18 months in the mid 1950’s. I was diagnosed later at the age of 13 in 1966. My poor Dad always had to give my sister her insulin injections before going to work everyday and back then it was a much more tedious job because you had to sterilize the glass syringes and stainless steel needles, let them cool off, then draw up the insulin dosages and do the injections. After I was diagnosed and came home from the hospital I helped my sister learn how to give her own insulin shots and because I was the only boy in a family of 5 children I was naturally always protective of my sisters but became a little more protective of my youngest sister with T1D. My parents quickly realized they could rely on me and I know that took a great weight off of their shoulders. My mother watched my sister and I dare each other who was going to give the injections that day and because we were actually having some fun with it, my mom eventually learned how to give insulin injections which I know made her feel a lot more confident. So Martha, I think you and Rachel will make out all right. Being so overwhelmed at first is a very natural feeling. If you ever need someone to chat with, please contact me anytime and I wish you, Rachel and all of your family all the best.

(christy) #15

School nurse that was sweet you replied. We have had some AWESOME school nurses and teachers. They are there to help in all ways possible. Love the fact they changed the menus to become carb counting as they didn’t when my son was little. Martha communication is the word. Communicate with the teachers, with the school nurse, with the phy-ed teacher as they really want to do everything possible to help your daughter have the best life possible no matter what issues any child has! Thanks school nurse!!!

(christy) #16

You go girl! Right attitude. Start doing some research to see what famous people have type I and what do they do for their living. I have read about some awesome ???rock climbers or sports fanatics that are type 1. They don’t let it stop them. You just at this time can’t be an active police officer with a gun or in the military, after that the whole world is open:) You guys own it!

(Christine) #17

Good morning Martha. Welcome to the new family. Our son Bo is 10 and was diagnosed October 13th. He also has Down Syndrome and handles this like a champ. He checks his own BS and gives himself injections. (We draw up the insulin).
We test in the mornings before school, the nurse tests before lunch and then doses based on the carbs he eats. They test again before he takes the bus to the sitter and then we test eves and bedtime. We have made more mistakes than imaginable and have learned to not blame each other. We have forgotten his Lantus when we traveled. We have forgotten his diabetic bag (we call it Bebe) and have been at Walmart in the middle of the night to see if we could buy more test strips. Thankfully we are still the honeymoon phase until we get our acts together.
Communicate, communicate, communicate with the school. Our school menu was converted to carbs for us and we use texting throughout the day. It is quicker than e mailing. It has been a learning process and we continue to learn each day.
You got this!!

(Nichole) #18

Hi I’m in the same situation my daughter is 10 she was diagnosed last Friday we have been in the hospital all weekend I’m so scared today is her first day back at school an she has to take her injection at school I’m just out of my mind prying for a cure in the future for all of us thanks for listening any advice would be greatly appreciated

(Megan) #19

My 7 year old daughter is afraid too, and also crying. I tell her how genuinely strong she is and beautiful. This has helped a lot! There have been no more tears, nor doubting.