My head is spinning

[Brenda27]

Hi Brad

Don’t let it become too overwhelming.

I’m late onset Type !diabetic diagnosed more than 25 years ago and, until I retired a few years ago, I managed it fairly smoothly while enjoying the challenges of a high-pressure journalism career.

Bolusing for proteins and fat are something new to me as well!

Remember there are many different kinds of diabetics and what you read here from some people may just not be the same for your son. Every diabetic takes a different approach to the disease so don’t look for a concensus here. Expect to read a lot of different opinions and pay attention to the ones that seem most appropriate for your son and perhaps his doctor and medical support team.

The great news is that insulin pumps and, most recently continuous glucose monitoring, and all the other technical advances are going to give your son a much greater chance of managing his disease effectively.

A friend’s daughter, Molly, was diagnosed at four and began using her first pump within a year. She’s 11 or 12 now and she understands how to use the pump so well that it’s like it’s part of her. She’s healthy and her parents tell me her HA1Cs are doing really well. She doesn’t curtail her life in any way, she skiis and and swims and has lots of friends who know about diabetes.

She lives in Ontario where Type 1s are covered by provincial insurance that pays for most of the cost of the pump if they comply with proper management procedures and are regularly monitored by a doctor. And I’ve been told that the U.S. is even more advanced in that regard.

It was difficult for me to decide to use the pump but once I started I’d never go back. Now as a postmenopausal woman with some health issues, I’ve just started on CGM, which seems promising too.

That’s the good thing about diabetes. There’s a lot of us! A that means a great deal of medical research is being done to improve our situation.

I know that at times it can feel like it’s all just too much. But brighter days will come and my endocrinologist, who’s head of the diabetes leadership centre at a leading hospital here, tells me that I’ll be able to live a fairly normal life and that won’t end earlier than it should because of diabetes. (No promises about getting hit by a car, though. )

So if that’s the prognosis for a 60 year old, I think your young son will do much better.

If he’s not using a pump yet, Molly would tell him to consider looking into it.

And remember, those of us with diabetes tend to learn a lot about ourselves, and others, from the disease that changes our perspective on life. So I have to say it’s not entirely bad that I’ve had to deal with it.

All the best for your son. it sounds like you’re doing all the right things and I’m so impressed by the love and care parents devote to managing their children’s diabetes.

In many ways its much harder than managing one’s own and there’s that feeling of being primarily responsible to someone else’s long term health. At least diabetics like me and your son are free of that burden.

Brenda

[Lucia]

@BradB

Has anyone heard of a book called Bright Spots and Landmines. I am going to purchase it.

Yes, one of the few books I’ve read over the years that I’ve found really valuable.

You’ve had so many great responses, and I just want to add that I’ve had Type 1 for 41 years now, since age 12. So there was none of this great technology back then (I had to test my urine in a test tube for a few years!), and I’m doing great with no complications. A combination of good luck and hard work. My parents were great about not making it a big deal and we all had a positive attitude, knowing I could, and can, do anything I want.

My last A1c was 5.7, and that’s my lowest ever as I continue to learn every day from people here and from reading, etc… You’re doing great - I can tell from your posts. Glad you found this site!

[Type1_Toddler]

Thank you so much for posting this! I have felt all of this too and don’t always understand how food affects our 3 year old (she was dx at 21 months). I feel so slow on learning and getting it, it’s nice to have places to turn to eat advice without the judgement and places where people have great advice!

[Julia12]

You WILL ALL be o.k. I am 60 yrs old and a T1 for 42 yrs. I have two children that I carried and delivered with no complications, other than hard work. My worst day was when I realized that my daughter, aged 4 at the time, was also T1 ( she was gulping warm, soapy bathwater ). She is now 37 and has 2 beautiful sons, ages 10 and 12. My son and so far my grandsons are not diabetic. The journey has not been easy, and no 2 days were ever the same, but try to keep things simple. Learn carb counting and try to keep meals to pretty much the same time each day. Please keep up with blood sugar testing. It’s the only way to KNOW what’s going on, but try to get a routine going that becomes a habit. Try not to be obsessive about testing or crazy about the numbers ( they often don’t make sense ), just aim/hope/try for 80 to 180. Don’t expect perfection, it doesn’t exist in T1. Don’t listen to anyone with T2 It’s a completely different condition.
Make sure you find an awesome Endo. There are a few out there. Many are a waste of time and money.
No one knows what tomorrow or any time in the future will bring, so enjoy today and when tomorrow comes, enjoy it. Easy to say but hard to do. I’m still living the journey, still learning and some days still crying. Your post sparked crying when I was typing this. I hurt for you and your wife but know that caring too much cannot be a bad thing. Most complications occur in Type 2’s who are or were, NOT diagnosed until late, or do not understand or properly follow instructions. T1’s have no choice. We are intelligent, incredible individuals who have to learn too much too soon, but our situation makes us stronger in the future than most.
Expressing your anxieties to us, hopefully takes a weight off for a little while.

[John_Courtade]

@BradB, I have an 8 y.o. girl who was diagnosed just before she turned 5 y.o. My wife is also t1d, and has been for 27 years. With all her experience we STILL don’t get it right every time.

Just recently daughter started being low ALL day. I adjusted her pump, everything was going great, then a week later she started being high ALL day. Reset to almost same settings as before. The moral of that story is even when you do everything right, you can still end up with highs and lows.

Don’t despair and do not lose hope. I know it is of little comfort, but the treatment options today are so much better then they were when I met my wife, or when she was diagnosed, and they are getting better all the time.

I highly recommend the pump and a CGM, especially something integrated like Medtronic or the t:slim X2 and Dexcom combo. I also think the best thing you can do for your boy’s health 10, 20, or 30 years from now, maintain, as best you can, a good a1c, and teach him the importance of remembering to bolus, check bg, etc. Have him help with all things diabetes from checking bg, to cooking healthy low carb meals. My little girl checks her own bg, calibrates her CGM, and helps count carbs; under supervision of course. In fact she learned to count by counting her carbs.

I know it is hard to stay focused, I was up all night every time the Dexcom alerted high. Just when I got everything good and just started drifting back to sleep, darn pump was out of insulin. Made for a long day at work I tell you what, but we power through for our children.

I know it is hard on the kids (who wants a diabetic to sleep over, even family? Though with a boy this may not be such a problem.), but it is hard on the parents too. It is easy to get into a fight over a forgotten bolus, and a date night can be near impossible to arrange without a babysitter who is willing to deal AND can be trusted.

I AM a computer programmer and some of the CGM in the cloud stuff is beyond me so don’t fret. Be glad of the age we live in for all the treatment options it affords us. My grandma’s glucometer was the size of a Steno book and required a bloodletting to generate a sample size big enough to read.

[Stuart]

Hello brad1,

This spinning you’re experiencing is called life! Remove the diabetes pieces and we are just like everybody else. WITH the diabetes bits we are just like everybody else too… we learn to deal with the fires in front of us.

Do you and mommy really feel guilty? He is alive because of you… guilt is not a monster you should feed unless tou want it to grow? Try not to feed that one!

Are you and mommy both sharing the ouchy stuff? My mother did it all in my case, but has she shared probably would have been smoother dor her and me too likely.

Was diagnosed at 3 before any of this tech existed. We survived just fine thanks. What spinning is causing you and your wife trouble that we can help you with?

I

[artwoman]

One thing you can do is to check out the adults with Type 1 forum there you can read about those of us who have had type 1 (T1) for ages. We have interesting careers,travel,there are iron man athletes- the whole gamut.Also,google famous people with type 1. You will see there are pro-athletes,actors,world leaders (like Theresa May, the Prime Minister of England and Supreme Court Justice Kagan - or is it Sotomeyer?)all succeeding with type 1. Probably sharing the pro athletes with your son will be a good place to start. And now, there are opportunities to be afire fighter or a police officer with type 1. Your son can still dream and live big.

Also, start looking for diabetes camps in your area. The kids get the full camp experience, the staff are all intimately involved with diabetes (D) and there are Endo’s and CDE’s who volunteer to be at camp to help your child learn to live- and live well - with D. Often, it is at camp that a child decides that he/she wants to do their own fingersticks, or injections (you know, "the big kids do it"syndrome). And camp is where kids with D find out that having a pump is cool. Basically they learn how to "think Like a Pancreas.

Speaking of which…Think…Pancreas. That is an excellent book. Written by a highly respected CDE who is living with T1D,. The title sums it up, that’s what you and your wife have been doing and what your son will learn to do. I have been living (thriving) with T1 for close to 40 years now. I get so much value from that book that I always buy the new edition as it comes out (every few years).

And as a last point, whereabouts (in general) do you live? There are opportunities for you to find locals in your area dealing with the same thing, and who have “been there and done that”.There are probably people right here in your city or town.

[Sally7]

Brad, Thanks so much for sharing! I have said it many, many time, Parents of Type 1children are Gods gift to us!
I think about the pain each and every one must go through thinking their child has a live long chronic condition. Gut wrenching! I don’t know how my parents did it, but they did a great job and I came through my childhood and have become a productive, happy and very healthy member of society! You both can and will do it also.
Where we are now vs 47 years ago, is night and day and while things look bleak, the outlook nowadays is pretty darn good for people with diabetes. The reality here is people with diabetes, do a much better job caring for themselves than most people do. Your son will be a happy, fun loving child, doing all the things kids do, good and bad. Thatwhat kids do.
My parents didn’t treat my any different than my siblings. I did everything they did, went on field trips at school, played on sports teams, had sleep overs, went to birthday parties (minus some frosted cake), here wasn’t anything I was told I couldn’t do. And once you get more comfortable with the ins and outs of the disease, you will feel the same.
Keep in mind you never stop learning. 47 years and I still learn new things all the time! And understand it can be very frustrating sometimes. What works today, might not tomorrow. And when the hormones start up, be ready for a wild ride. But you will all get through it.
My parents gave me the reins very early on and I haven’t looked back. They told me it was my diabetes and I had to learn how to handle it. So by the end of the second year, short of cooking and going to doctors appointments, I did it all. They were always in the background if I needed help or had a question or just wanted to cry in frustration, they always had my back but it was all me.
You will find that happy place when I know when he is ready to take over. Remember it’s just a number and that number is never good or bad, it’s a learning experience. Hang in here Dad and Mom, you are asking all the right questions and are seeking more knowledge. Keep it up and when you get to that low point, reach out! We have all been there! Thoughts and prayers always!

[Bob38]

I am so sorry you, Brad, and your child have this huge challenge in your life. It is important to teach him the truth from the beginning. He can live a long healthy life if you can instill in him that this is HIS challenge (other people have theirs) and don’t feel sorry for him. You and He can manage this. My husband has Type I Diabetes and we follow Dr. Richard K. Bernstein’s protocol. He is also a Type I Diabetic (and an Endocrinologist and Diabetologist) since he was 10. He did not alter his lifestyle until he was in his 40’s and reversed all of his complications and is a very healthy 82 year old still practicing and helping Diabetics. He has a very active Youtube Channel, “Dr. Bernstein’s Diabetes University”; He has a Diabetes Bible, "Dr. Bernstein’s Diabetes Solution" (which he insists anyone desiring to follow his protocol must read and use as a reference available on Amazon); He has a monthly radio show to which you can submit general questions and will will answer them and then a rebroadcast is posted in the University Youtube channel; and he has a Facebook support group with many, many parents like yourself as members - Typeone Grit. Suggest you check them all out…then trust in the results he has gotten. He is considered THE EXPERT. Good Luck!