I am SO honored to have my friend Megan share her experience with Type 1 Juvenile Diabetes. Her beautiful daughter, Maeve was diagnosed several years ago when she was just a toddler. Megan and Maeve have done an incredible job spreading awareness and educating others of the devastating disease. Today Megan is sharing 10 things she feels other parents need to know about Type 1 Juvenile Diabetes.
- In hindsight, my child’s symptoms were: I look back at pictures and Maeve looks
frail – like slow steady weight loss. She was probably peeing more but she was in
diapers so I didn’t really notice until the end when she was peeing through diapers. She
was definitely drinking more but again I rationalized it saying – it is hot, we are in Florida. - The specialist who helped us the most: was the 2nd pediatric endocrinologist we saw at CHOP. He was super progressive and put Maeve on the pump right away (6 weeks after diagnosis) when other docs were telling us she had to do shots for a year. Another doctor said she wouldn’t consider it until she was 8! My advice is always get 2nd, 3rd and 4th opinions!
- The specialist we didn’t expect to need: was a marriage counselor.
- It took us this long to get a diagnosis: It took 22 days to get a diagnosis. We were at the pediatrician or urgent care 7 times in 22 days with varying diagnosis from the flu, to a sinus infection, to mono. Maeve was only diagnosed because she slipped into a diabetic coma overnight and when we rushed her to the ER they checked her blood sugar and it was so high the meter couldn’t read the number.
- The biggest financial expense because of this medical condition is: ALL OF IT MONTHLY! The supplies that a Diabetic needs to survive are endless: insulin, pump, syringes, lancets, testing strips, alcohol swabs, iv tape, IV prep, pump supplies, CGM supplies, sensors, bags to carry all of this stuff!, glucose tabs, juice boxes, ketone strips, glucagon kits.
- The organizations that helped us: Juvenile Diabetes Research Foundation (JDRF), The Diabetes Research Institute (DRI), Children with Diabetes (CWD), and probably most importantly the DOC (Diabetes online Community).
- I wish my friends and relatives knew: How hard we have to work to make it look like “no big deal”. How hard to have to fight to prevent short term and long term consequences. How sometimes it doesn’t matter how hard we work – it is all for naught.
- Our ray of hope: TECHNOLOGY improving quality and quantity of life.
- Our biggest cheerleaders and supporters: Our family and friends – both local and far away and the Brave Maevens – those who follow Maeve on FB.
- I wish I had known: I wish I had known that I would get to a place where I could say “Thank you, Diabetes. Through you I have seen kindness and generosity beyond measure.”
Megan shares her heartfelt thoughts on the Brave Maeve Facebook page, which is a
wonderful resource for any family affected by Type 1.
Maeve, her family, friends and countless supporters participate every year in the local
Diabetes walk to raise funds for research leading to a much-needed cure. They always
have the best shirts for their team, and this year is no different. Please help them get
one step closer to a cure. Their t-shirt sales are a large part of their fundraising efforts.
Shop here to support their fundraising efforts for the local Diabetes walk.
Click to the picture to SHOP!
Don’t miss any of the other articles in this series. We address a multitude of medical conditions.
So insightful and beautifully written. I feel that exact same way. People have no idea what our children go through or for that matter what us parents do as well.
Thank you for posting this. Informative and well written!
This was interesting to read from the perspective of a parent. I was diagnosed as a young teen so my experience was a bit different. However, many of my symptoms were present as a small child, too, but doctors didn’t k ow as much as they do now. I have been a T1 for 18 years now and like Megan said, there is a lot of work involved to make it seem like I am ‘fine’ most of the time. T1 usually has the word ‘juvenile’ attached to it because kids are the ones who usually develop it. It’s very interesting, though, how when you are no longer a child you are largely ignored as a faction of those with T1, and how it seems there are no support systems for T1 who are now adults. Many folks assume that of you as an adult say you are diabetic, you are type 2 and can just ‘go on a diet’ or ‘avoid sugary foods’ in order to ‘get rid’ of the diabetes. More education on diabetes in general would be a wonderful thing for folks to have so as to understand what people like Maeve and people like me go through to live a ‘normal’ life. 🙂
Jessica – thanks for sharing your story. You should check out http://www.thefitblog.com – the girl there also has T1. She writes great posts about exercising with T1. I hope for a cure in the future – it’s an awful disease! Hugs!
HI,
My son developed hypoglycimia…and he has been getting low sugar coma… and it is the opposite where he needs to eat more and also frequently…doc in our limited resouresed country have different opinions ..but all im concerned is to know if it is another way that leads to eventual diabetes as an adult my paternal grand nom had type 2 and both my husband’s mom and uncle are type one diabetics… But my son says healthy he is not obese and he does not take sweets and junk food as other kids. He got this when he was 5+ he was mostly drowsy….now he has competed 6 so worried as to why it is.
Thanks for sharing your story.
Thilo