Coping with the news that my four yr old has type 1

I am new at blogging just like I am new to diabetes so I hope I am doing this right.

My about to be 4 yr old daughter Ava began showing all the symptoms this past fall. They became more and more evident in December and January. February I brought her for blood work. I really thought there was just no way she'd have diabetes, like as if that could never happen "to us". Ava had been hooked on her pacifier and I had finally put an end to it, soon after she started drinking all the time. I really wanted to believe that she changed her pacifier addiction over to a "cuppy" addiction. When the Dr. called and told me the lab results and that we should see an endroconoligist I was upset and but had no idea how drastically life would change. The next day we were admitted into the hospital through the e.r. and within 20 minutes of being there my little angel was being poked and prodded what seemed like constantly. It didn't take me very long to hate diabetes. When they gave her her first dose of insulin in the e.r. , that's when it hit me. Ava needs this insulin to basically live and will need it forever and this is real, it's really happening, it's not a nightmare. This was on Feb 8th. I am a student nurse, when this happened, I withdrew for the semester, there was just simply no way. I am still in shock, and I often feel like I am mourning. I'm mourning her old happy go lucky, shot free no finger pricking self. I am mourning the days of when the biggest triumph of the day was the argument over what shirt matches what tutu. I am constantly worried about her numbers. I am so worried that in her sleep she will drop and won't wake up from it and I'll get up in the morning and find her lifeless. I am up several times a night checking her, if not testing her, checking her temp and skin pallor and breathing pattern. I am scared for her future...will she have complications? Will she get depressed and worn down from the day in and out demands of this disease???? Will she be a responsible teenager when the time comes for her to manage this? I have come to the conclusion that I am going to be a nervous wreck for many years to come. People say it will get better.......but how? When will we ever hit a "good patch" when I don't have to worry about her in the middle of the night? NEVER! I am so sorry if I sound negative but I just have to get these things off my chest. It's just so weird, because throughout the day, I am like this carb counting shot giving blood checking machine that has flashbacks every so often of how life was 2 yrs ago or even 6 weeks ago and I get that feeling like someone just took your breath away....but in a bad way. And night time is the worst, I think about all this in my free time since I no longer have my studies, I think about her, when I should sneak in her room again and prick her, is she okay, how will she wake up? It's enough to make a person crazy. So here I am...I am SO thankful I found this website. We have no one, or at least no one that we know of in our family histories that is a diabetic. Nor do we have any friends with it. Signing up here all of a sudden feels like a new home for me. Especially since no one I know personally can relate to me or Ava. I would love to hear everything and anything from anybody! Moms please reach out, and I would love some tips ....some great food ideas would be so helpful! I am new to the whole food thing and I would love to know what foods are best at keeping the kids from going up too much. I am noticing that even though I am covering the food or carbs with the proper amt. of insulin, she sometimes still rockets after eating certain things. Just wanna say thank you in advance for reading this and replying if you do ...and I am so happy to be here and meet you all :)

Views: 33

Comment by Reatha on February 28, 2010 at 6:26pm
My daughter was diagnosed with diabetes at the age of 4. DEVESTATED was not the word I would use. I as gestational diabetic with her. I was the best patient ever--stated my doctor--in staying in the guidelines of controlling this disease. I had her tested as soon as she was born. Reality did not come in until a few years later---yes I was taking excellent care of a beautiful girl with diabetes, but it all seemed like a dream. After being in a car accident while trying to get her to the hospital (she was about 12 then and having convulsions) I lost it. REALITY CHECK. It is not going to be easy, but we can blog anytime you want. I am also new to this site and getting back into sharing (been mobilized for five years in the army.) By the way thanks for sharing. Others as well as I need to hear your thoughts and understand what you are going through.
Comment by Reatha on February 28, 2010 at 6:30pm
I am trying to get my daughter to start a blog on this site. she is an expert in diabetic situations and I am still learning from her. Dealing with her as a teenager is another blog session that I have to take time to "word it correctly" LOL and siiigggghhhhhh.
Comment by Cara on February 28, 2010 at 7:31pm
I'm not a mom, but I was diagnosed with diabetes at age 4. Twenty-four years later, I'm doing well. I'm sure my mom has never stopped worrying about me. I'm sure she still does to this day. But you'll make it through. I know it seems like everyone is telling you that. But I'll tell you the same thing that my pediatric endo told my parents in 1986: "Don't worry about being perfect. Just do something. Doing something is way better than doing nothing." And they did. They did the best they could. It wasn't always perfect. But they did their best and I still turned out okay. ;)
Comment by Cobi Campbell on February 28, 2010 at 8:13pm
Oh how I relate! My just-turned 4 year old was diagnosed a little over a year ago. I sucked it up right away and didn't fall apart until about 6 months in. Then it took me 6 months to pull out of it. There were good days and bad days during that time but mostly bad. I tried not to let her see me cry and I dragged my exhausted body around trying to function on very few hours of sleep. Things are better now. After a while you learn to wing it and not sweat the small stuff as much as is possible with this disease. To let her be a kid even though you're like a duck: calm on the outside but paddling furiously on the inside to get her to be able to do what the other kids are doing. And to learn her patterns and what foods do what to her blood sugar. It sounds like you've already started noticing some which is great!

If I have any advice for you it's to let yourself feel this. Don't avoid it. If you do, it may come back to bite you like it did me. But be careful what you let her see...she will pick up on how you react. If you are positive, she will be more likely to be positive. There will come a day when it all gets easier. You will still fight about what shirt goes with what tutu (at least we still do!) and you will probably have days when it seems like everything is completely out of whack. But there will be little periods where you are not as worried, her numbers look better, and life feels pretty darned good again. Hang in there!
Comment by laurenc873 on February 28, 2010 at 8:24pm
Hi Kelly. I know this must be especially hard for you to take care of someone else. I know it's hard enough for me to learn all of these new ways of living, but when you're not able to feel what it's like, it must be even harder to gauge what your daughter needs. All I can say is that you will probably always worry, but you will ADAPT. That's the key. Down the road, things will become second nature. It might take awhile, but you'll learn. Definitely see a Certified Diabetes Educator (CDE) if you haven't already. I learned a lot from mine. I also read about 5 different books to try and learn about what I need to do. I have this one called "Type 1 Diabetes: A guide for Children, Adolescents, Young Adults- and Their Caregivers" which is pretty helpful. It has a good overview of things. I wish you the best...just think, she has the tools now to live a close to normal life as possible. It can be done, and I'm sure you'll be great trying to help your daughter as much as you can.

Foods that seem to work well with me:

Any vegetable (I usually count a couple of carbs less than what may be in it because veggies are the one thing that seem to effect me the least)...like carrots might be 8g for a serving, but I will count it as 5 because the effect is dulled by fiber? Although I don't usually subtract fiber for other things.

-Trader Joes High Fiber O's Cereal, Ezekiel cereal (if not a picky eater), Kashi Puffed Wheat, Quaker Oat Bran Cereal. Sugar added cereal seems to spike me no matter what.
-Believe it or not, Chocolate!! Lindt chocolate is the best!,
-Nuts are great
-Chobani Vanilla Yogurt (13 g carbs)
- It seems like the least amount of carbs you eat, the less margin of error you have...so although you can pretty much eat as much as you want if you match the insulin, it just seems to work better no going overboard.
Be careful with oatmeal. It may not happen to everyone, but with me...if I eat just plain oatmeal, I will go up to like 170-200 at 2 hrs, then 30 min. later crash down to like 50. I don't know what it is.


Just a couple random tips. Good luck.
Comment by ANTONIA RETMAN on March 1, 2010 at 5:55am
I was diagnose at the age of 3 in 1976, and back then there were no glucometers. Technology has come SO far since I was little. I don't have any kids with D, so I don't know much about the worrying. Diabetes is all I've ever known, so in that regards I believe I'm blessed because there really wasn't any lifestyle changes....for me anyways. God bless and good luck with coping to you and your family!
Comment by Lorraine on March 1, 2010 at 7:43am
Hi Kelly,

My son was diagnosed just before turning four three years ago. I very much understand everything you are saying. I remember in the weeks after diagnosis, looking at any picture of Caleb and welling up thinking THAT little boy was gone - he is forever changed by this dreadful, evil thing called diabetes.
I do not feel that way anymore. But it took time. It took time for me to adapt, for Caleb to adapt - for everyone in the house to adapt. After the first few weeks I could see how Caleb was still Caleb and he was still doing all the things he ever did. Today it is just a part of what we do. Caleb goes to school, plays baseball, does his homework, plays the piano, checks his sugar, we count carbs, yada yada... That doesn't mean there aren't days that I'm really pretty irritated with diabetes - there are (and "irritated" is putting it lightly). But I think you will find in time, that there is room in your life to manage it and it will not be so overwhelming.
I agree with Cobi - let yourself go through this mourning. It's okay to be sad and angry and everything else. I remember a mom of a CWD at Caleb's school telling me within those first couple of weeks, "Oh the beginning is so overwhelming." It was almost like she was saying, "Wow, it sucks to be you right now," which was a little depressing to hear. But yet I took comfort in that because I knew we could get through the beginning and there was something to follow that would be better. I could also see her first hand doing things that seemed unimaginable to me at the time - like letting her child go to school and walk out the door without much of a worry.
I'm glad you've found us here. There is much support to be given and being able to connect with others helps a great deal. All the best to you all!
Comment by Tammy R. on March 1, 2010 at 8:48am
Hi Kelly!
My daughter CJ was diagnosed last September w/Type One. I will tell you this-everything you are feeling is perfectly normal. I'm learning, as I reach out to others thru this forum and others, that none of us are alone in this. We are mommies-we can do this!
Comment by Reatha on March 1, 2010 at 9:13am
Wow so much support here. Kelly you see, there is help from those of us who know from experience- and are still learning. How is your day going today?
Comment by Emily B on March 1, 2010 at 2:19pm
My son was diagnosed last summer at age 10 so age-wise we're in different situations, but I do understand your worry. For months I hardly slept. I checked his blood sugar multiple times every single night. His Dr. kept telling me to relax and at about 6 months, I did. I still worry, but every day I'm more comfortable with everything. Every time he feels low or high I learn to trust that his body will warn him of any problems.
I have (almost) a normal sleep pattern again, only checking through the night if he had weird numbers or something. I joked for a long time that I'd probably never sleep again until he was married and his wife could take over. But I'm realizing that he's ok. He can go to bed and wake up in the morning just like everyone else.
Someone told me when my son was diagnosed that every week that goes by is another week you've gotten through and learned from, soon enough it turns into a month and then 6 months and then a year. It’s true. We're only a little over 7 months since diagnosis now and to think of all we've learned in that time and how close to "normal" our lives are already amazes me. This site is a huge help, so full of info! You're off to a great start.

Comment

You need to be a member of Diabetes community by Diabetes Hands Foundation: TuDiabetes to add comments!

Join Diabetes community by Diabetes Hands Foundation: TuDiabetes

Advertisement



REsources

From the Diabetes Hands Foundation blog...

DHF receives $200,000 grant from Novo Nordisk

Grant given to support programs aimed at bringing together people touched by diabetes for positive change BERKELEY, CA: December 4, 2014 – Diabetes Hands Foundation (DHF) has received a grant of US$200,000 from Novo Nordisk to support programs aimed at Read on! →

Guest Post: World Diabetes Day 2014 on Twitter… sifting through the data

At Symplur we track hashtags, keywords, user accounts, and pretty much anything else on Twitter that has to do with healthcare. We collect the data and then build countless ways to slice it up so that we’re able to better Read on! →

Diabetes Hands Foundation Team

DHF TEAM

Manny Hernandez
(Co-Founder, Editor, has LADA)

Emily Coles
(Head of Communities, has type 1)

Mila Ferrer
(EsTuDiabetes Community Manager, mother of a child with type 1)

Mike Lawson
(Head of Experience, has type 1)

Corinna Cornejo
(Development Manager, has type 2)

Desiree Johnson  (Administrative and Programs Assistant, has type 1)

DHF VOLUNTEERS


Lead Administrator

Brian (bsc) (has type 2)


Administrators

Lorraine (mother of type 1)
Marie B (has type 1)

DanP (has Type 1)

Gary (has type 2)

David (has type 2)

 

LIKE us on Facebook

Spread the word

Loading…

This website is certified by Health On the Net Foundation. Click to verify. This site complies with the HONcode standard for trustworthy health information: verify here.

© 2014   A community of people touched by diabetes, run by the Diabetes Hands Foundation.

Badges  |  Contact Us  |  Terms of Service