New to the T1 diabetic world


(Duncan) #1

My daughter was just diagnosed in October with T1 diabetes. Life has been a roller coaster since then. She ended up in the ER with DKA and blood sugar of 1300. We are taking it day by day as they are till learning to control her levels because she seems to remain high.
It’s been a life changing experience for everyone but I will say she is very involved and I couldn’t be more proud of how she is starting to handle things! She even started giving herself her own shot this week. She’s only 10. Just wanted to introduce myself since I’m new to all this and know there is support from others who are dealing with the same thing and bounce thoughts and ideas off of.


(joe) #2

hi @Duncan,

there are a lot of us here, supporting either parents and caregivers or fellow t1’s. The first year is tough. You will be an expert by 18 months so do not worry about learning everything at once.

the best reference in my opinion is “Think like a pancreas” which is a cheap buy on amazon and worth it’s weight in gold. the other thing helpful is the “Calorie King” book or online database for carb counts.

Check out the JDRF for a local chapter. Got to http://www.jdrf.org/ and click on JDRF NEAR YOU at the top.

I hope you have access to a Diabetes Educator, they can be most helpful in the beginning and often have more time to support you than an endocrinologist.

I have had this for going on 38 years, and so has a bunch of us here. Please reach out if you need support.
Joe


(beef5stew) #3

My 7 year old daughter was diagnosed on Saturday. After several days in the ICU for DKA we were able to come home late Tuesday night. It will be one week tomorrow.

This has been an emotionally draining week for my wife and I.


(nurseberta) #4

I just joined recently but my daughter was diagnosed less than a year ago. December 2015, she was also in DKA and in the ICU at the time of diagnosis. the 1st 3 months I was in a fog, an emotional roller coaster. It’s a heavy weight and it doesn’t go away but you CAN do this. The most helpful advice I got in the early months was to realize it’s a marathon. I still get sad and emotional but most days I manage pretty well. Life will go on and you will get to a "new normal"
Hang in there, you are not alone


(Duncan) #5

Thank you everyone for the responses and kind words of support. You are all right, it is an emotional Rollercoaster and it’s very overwhelming in the beginning.
I have the Calorie King book which helps a lot. I also log everything because it seems like my brain gets so overloaded with the constant changes they are making to her base doses and the highs and lows that some days it’s hard to remember what’s going on.
Mainly she is running high all the time and I see her frustration when she looks at those numbers. I keep reminding her she is doing everything right and it takes time to figure out where she needs to be insulin wise before we get a good handle on it.
The school has been so wonderful in supporting her as well and that makes things easier. I’m not getting 5 calls a day because she wants to come home and she doesn’t feel good and just wants to be with mom. Those are the hardest days for her and myself because I want to be there for her but I also don’t want her to just give in to this. She has her bad days where she wants nothing but mom and hearing her cry over the phone is so hard.
It’s a long road but I’m confident we will see the light at the end of the tunnel. She just got her Bag of Hope today which brought a smile to her face when she pulled out Rufus. I’m just so happy to see my little girl slowly coming back from all this.


(edlefson) #6

My daughter was just diagnosed in May. It is still a roller coaster. She just turned 10. She wants to be independent, but there are many times that she still needs help. She struggled with highs at the beginning. Then, we got them under control, just in time for school to start. Next, we started fighting lows. It is a constant battle to stay on top of T1D, but we are managing. You will get there and your confidence will increase (on most days).
It helped my daughter to meet other children with T1D. We have attended a few events where there have been children around her age. She said she feels “normal” when she is around them. We have also included her friends from school in her life. I explain everything that I am doing with my daughter to them. I let them touch the items we use, ask questions, and encourage them. I know that it is scary for them to see their friend going through a hard time.
Best of luck on your new journey!


(sarah919) #7

This communitynis so helpful and people really look to help and encourage! It’s been my saving grace. My daughter was diagnosed in feb this year at 21 months. It’s definetly a process learning, and there’s so much to it! having others that are or have gone through the same thing makes you feel so much less alone. No one will understand what you’re going through like the people that have gone through it too!


(Hollykio79) #8

Hi everyone! My son was diagnosed Nov10 of this year… and emotional rollercoaster is so an understatement… He was taken for what I thought was strep throat to learn he had sugar at 427 and climbing and was in DKA where he was transferred to another childrens hospital and put into icu… it only took us 3 days to bring him home… But he is still one month later all over the place with his sugars and they change so rapidly that I’m struggling to understand why…He doesn’t seem to want to accept this is his life now and throws horrible tempers… the things coming from ym 13 yr old son are things i never saw before all of this started… It’s really nice to see I’m not the only parent/caregiver that is struggling through these hard times.


(momofEEWtid) #9

My 9 year old son was diagnosed in June of this year. I have to reach out for support and I should have done so earlier than this. If I look at the big picture, i get very upset, scared for him. He has surprisingly taking it so well… I thank God everyday for my son. He was also in DKA when we found out,. he lost so much weight, down to 40lbs before we knew. Now he is happy, and healthy, he isn’t doing his own shot yet, we use the pen. I am his main caregiver, and going back to work in January. He is over the “honeymoon” period they told us about and now its getting the lantus at the right dose. Other than that, so far, so good… just need to be connected with ppl who understand the emotional toll this takes on parents… its hard to see your child with an illness :frowning:


(kcarleonard) #10

My daughter was just diagnosed two weeks ago with T1D. She is 17 and a senior in HS. Once we master this and get her levels to a new normal hoping she will want a pump. Right now she does not want it - they are not very “fashion forward” I can tell her and show her every image and all the famous people and it just doesn’t seem to change her mind. So do we just let her deal with this in and make the decision on her own time? Also - any suggestions for when we send her off to college next year?


(Tina Johannemann) #11

I am a mom of a 14 year old boy who just diagnosed with type 1. He seems to be handling it much better than I am! I know he needs to live his life and continue so the things he enjoys but I am so scared. I don’t want to leave the house. I feel so much safer being home. I want to support my son and show him that he can continue doing all the things he loves to do but right now I feel like I am doing the opposite.
I feel good when his numbers are good but as soon as they deviate I panic!
I know it’s not about me but I feel like I am in a funk that I can’t come out of.