On March 23rd life dealt us a gut punch

Hello all, I have been somewhat silent on this topic but wanted to share. Who knows, there may be other members who can relate even though this affects a very small percentage of the population.

Let's go back to early March. It was quite odd that our 8 year old daughter was no longer finishing meals. She could finish any drink (lemonade, chocolate milk and any juice drink we gave her). She started waking up to use the bathroom 2-3 times a night. I noticed one night when I picked her up from church on a Wed night that she was "different". I asked her if she was ok and she said "yeah but I am very thirsty". So we stopped at a water fountain on the way out and she drank for a while. Then when we got to the exit she stopped again at another water fountain. Half way home of our 20 minute drive she closed her Nintendo and just sat there. I asked her what was wrong and she said "nothing, I am just thirsty". When we got home she drank a big glass of juice and went to bed. I didn't think anything of it for a few days until my wife asked me "Have you noticed she has been drinking a lot lately? We have gone through 3 cartons of orange juice in 3 days and she's the only one that drinks it". Normally a carton of juice will last a while and I have to drink it myself when it gets ready to expire. So I told my wife "since today is the last day of spring break and all of you are out of school go to the pediatrician". My wife is a teacher and follows the kids' schedule.

They went to the doctor and explained the symptoms and had her pee in a jug. They tested it and her blood sugar was 375. The doctor said he was admitting her to the hospital and that she was Type 1 diabetic. (The normal range for people without diabetes is 70 - 100).

It has been scary for us and our lives have been changed forever. We are learning as much as we can about it (and there is a difference in Type 1 and Type 2). She will be insulin dependant for the rest of her life.

After 4 days in the hospital she returned home and to her "new" normal life. She checks her own blood sugar (finger prick) and can give herself insulin shots! There are two type of insulin that she uses. One is a long acting insulin and she gets one shot a day in the morning. The other is fast acting and is given when blood sugar is high. Nights are the scariest for us. My wife has been sleeping in her room ever since and checks her sugar once or twice a night. It was getting low around 1AM and she would give her a drink of juice or something sweet. On our last doctor visit he lowered the dosage and the good thing is that it doesn't get too low at night any more. It is very dangerous to go low (high is bad as well but low can be deadly).

We have learned a lot as has our daughter. She is a trooper. She is not afraid to prick her finger or give herself shots. The biggest thing for us so far is counting carbs. We are learning that sugar is not bad but needed to keep her levels as normal and manageable as possible. Some things that are sugar free are not carb free. Luckily she has only needed the long acting insulin (for the most part, it did go high at school the other day and she had to have a Novalog shot). Also, physical activity causes blood sugar to lower. So one day when it was a bit high she was getting ready to go to PE and my wife decided not to give her a shot because she would burn the sugar by doing physical activity.

Luckily my wife's classroom is very close to my daughter's. She walks over to my wife's room when it is time to check blood sugar and eats in her room for lunch.

Another thing I have learned is that any kind of bickering no longer matters (this band sucks, this band rules, complaints at work, etc). The only thing that matters to us now is keeping her alive.

We also have met a ton of people with Type 1 who live pretty normal lives. In the hospital a nurse came to visit us. She was diagnosed with Type 1 when she was 6 and is now 24. She works in the ICU and heard about our daughter and came to visit her and showed her the insulin pump that she uses. There are teachers and other kids at school on a pump that are also Type 1. My daughter will be getting a pump but normally they like the kids and parents to manage it at first by injections and blood meters. We are getting comfortable doing that and while a pump may make things easier it is a bit scary for us but that's because we don't understand it yet. We are learning more every day.

I'll close now but if anyone here has Type 1 we are now members of your club. And if you have kids know the symptoms - thirst, too many bathroom breaks, weight loss, loss of appetite, pale, clammy. It's scary but we will not let this defeat us.

I'm very sorry to hear about your daughter. I'm type 1 - diagnosed back in 2005 - and I agree that lows are far more dangerous than highs. For instance, when I was diagnosed my blood sugar was over 600 and I had lost 85 pounds in a few months! The lowest I've ever experienced was 32 and my vision was turning grey. Very scary stuff. Night time lows are the scariest for diabetics, but I've been lucky and I've not ended up in the hospital yet for any lows.

I use insulin pens and not pumps, but my brother is also a Type 1 and he's used pumps for decades with great success.

Please don't hesitate to ask me questions about this. I will be more than happy to tell you what I know.

I'm type 2, just diagnosed mid-Feb....I'm on oral meds only, and have very good control of my blood sugar as long as I eat very low carb.
I have a niece who is 11 and has type 1, diagnosed at age 9. She has a pump and is very active with sports like softball and volleyball.

Sorry to hear about your daughter Mike.  Health issues with your child has to be one of a parent's worst nightmares.  Good to hear you're all apparently dealing with it successfully.

I'm on the "diabetes watch" myself because it runs in my family.  The last blood work I had done in January had my glucose at 131 which is "pre-diabetes".

Please keep us posted on her progress because even though Type 1 is the less common type, as you've already seen, people here have been affected by it.

Thanks for posting this personal situation knowing that doing so might help others here.

Yes being a parent having a child be ill or worse is well the scariest thing ever.

I am glad things are currently on track and all is as well as can be with the new program to adhere to.

Thanks for sharing your scary story and I hope things continue to improve.

My thoughts and prayers are with you brother. Having to go through stuff like that with kids is scary. I hope things go well with you guys and she can be as "normal" as possible.It breaks my heart that kids have to go through stuff like this.

Thanks all. It is definitely a learning curve. my poor wife has been sleeping on the floor in her room since she's been home. I offer them our bed every night but they always decline.

My daughter is using a Levemir pen and a Novalog pen but we also have the vials and syringes. The pens are much better and easier to use. I work with a guy who has a daughter with Type 1 and he has been a big help. Shortly after the diagnosis he brought some syringes to me. He said "ok, class time. Time to learn how to stick yourself". So we practiced with saline solution and I gave myself some shots.

I will say the pump people are pretty aggressive. They called yesterday and said "great news, we can get your daughter on a pump next week but you haven't met your deductible and we can set up plans blah blah blah". We said "HOLD... It is WAY to early for a pump she was only diagnosed around 2 weeks ago and she is in the honeymoon phase. We need to get this regulated for at least 6 months before getting a pump and we HAVE met the deductible. Call us back in 3 months".

My insurance is good and bad.... Bad because I have a high deductible plan. Good because when you meet the deductible it covers 90%... Then eventually 100%. I have met it and have paid out the ying-yang but all of the billing hasn't caught up with insurance yet so I have overpaid it by about $1500. So I will be due some money back. My insurance has a "health savings plan". The good thing about it is that I had never used it. It had been sitting there collecting money for the past 3 years since we switched over to it. We have a Union at work and they negotiated to have the company put $1000 in the account every Jan. So for 3 years thats over $3000 and I have had money going into it weekly ever since. It was getting pretty large since I wasn't using it so luckily everything I have paid out has been covered by the HSA. I continue to put money into it (around $2000 a year out of my own money and I am so glad I did).

And as the old saying goes, when it rains it pours. I broke a crown. Luckily my teeth don't hurt but I can tell a piece is missing. That will be covered by dental insurance but I know a new crown (even with insurance) is prob $800. Then yesterday and AC unit in the house went out. That was another 4 grand I threw out there for a new heat pump which they will install this weekend -- this is Florida and i can't help but look in the bright side -- Temps have been around 75 so it isn't hot. I'm thankful this didn't happen in July and since it is cool season AC units are a bit cheaper and they aren't busy yet so I picked Sat for them to install since I'll be home that day (can't afford to miss a day of work). I need my tooth to hold out until May at my next dentist appointment.

Back to Type 1. The first visit from the doctor in the hospital he asked if I had any questions. I said "Yes, HOW... And what could I have done to prevent this?". Answer 1: How - No one knows, it is an autoimmune disease. Answer 2 - There is nothing I could have done to prevent it. My 16 year old daughter asked him "Why does it have to be her, why can't it be me instead? She's just a little kid".

We've been beating ourselves up for not noticing it earlier. The doctor said her levels have been high for at least 3 months. Orange juice definitely isn't the answer when a kid has high sugar --- orange juice is basically vitamin C sugar water which caused it to go up even more.

We start an education class tomorrow and those classes will help as well.

We are staying positive and so is she. She is getting good at counting her own carbs and she has a log book where she writes everything down (carb count, sugar levels). It could have been something much worse. Although life long, T1D is manageable and others have shown us that. We have a pretty good support group around us. Teachers and kids at school with T1 help and I have several coworkers with kids that have it.

We try to stay positive and look on the bright side. She's a happy kid and has taken this bull by the horns. We definitely have a positive outlook on things --As I stated in my first post trivial things no longer matter - bickering over petty stuff with work no longer affects me or my wife. That stuff will work itself out and doesn't last forever. T1D does. And since she is young by the time she is 20 this will all be second nature to her. She will know what to do and will know how to manage it. We also tell her what a good job she does and do our best to keep her positive.

Sorry to hear this news...

Try to stay positive and do what you can.

Thoughts and prayers for you and your daughter Mike. Good to hear she is a smart and tough kid and that things are not getting worse.

Sorry to hear about this news, bro. But sounds like your girl has what she needs; loving family and support.