Newly Diagnosed 5yo- Exhausted Parents

Thank you @Chris!

Can I ask- is it normal to be consuming 600mg+ of caffeine per day to stay awake?

I’m a very fitness oriented person who loves my schedules and routines, but once this hit, I’ve been staying awake until 1-2am and not really sleeping. Plus my son is still asking me to play with him all day long, and my one year old daughter is constantly getting into trouble. On top of it all I’m still trying to get work done and now research all of this diabetes stuff. I can’t even tell up from down anymore.

Unfortunately it’s taken a toll on my stomach as I think all the stress and anxiety with caffeine are catching up. I need to remember to take care of myself as well…


I drink about that every day. :slight_smile: That’s 2.5 cups…at a minimum I drink 2 cups, but when I was up all nights, I probably drank 1200mg (5 cups) per day. You’re fine if that’s all it’s taking! lol

I always add “cream” to my coffee, though…black coffee tears up the stomach.


:sweat_smile: yeah I can see myself crossing over the 1 gram threshold soon. 2 cups and I still feel like I could take a nice afternoon nap…


I shipped 3 months of Dexcom supplies to you. Unfortunately from my state to yours it’s not super fast, so you are looking at Monday or Tuesday. (The overnight and Saturday delivery options were ridiculous.)

It is a little bit of a trust-fall giving your name and address to an internet stranger. Take your time, read posts, spend some time on FUD. But at some point - maybe in 3 days or 3 months or 3 years - you will be glad you found FUD.

Eventually you will realize, not only did your son get a new disease diagnosis, but he also got a thousand new brothers and sisters.

On the Dexcom and endo stuff - you will have a bit of a cushion with it once you get the stuff in the mail. So if your endo does not give you a prescription for CGM on your first visit, it should be one-and-done. Keep looking.

I am curious what insight others here may have on this, but I am not sure of any reason why you would not have a prescription on your first visit. Your endo needs to be engaged with you on this right away. And if he/she is not, you have the CGM side of it covered for a few months, so research other endos and keep looking.

It is the same deal if you need insulin, you don’t need to worry about getting it. If you need it, you will have it.

Spend some time here reading and asking questions. That’s the best thing to start with.


This is one of the main reasons I wanted to get myself as educated as possible, as quickly as possible…so that I could speak intelligently with the Endo and let them know I knew what I was talking about and to ensure we understand the relationship…she works for me and I make the decisions. I listen to her input but at the end of the day, I’ll do what I think is best for the management of my sons Diabetes. She can either get on board with that or I will find a new Endo - there is no comprimise with me. I am not a know it all and I am open for learning, but so far I haven’t learned anything new from my Endo…her purpose (in my view) is to listen to my concerns, write my scripts and monitor Liam for the kinds of hypoglycemia related concerns that diabetics may get throughout their lives.

When I visit my Endo, she understands that I’m one of those patients that knows what he’s doing and she’s onboard with doing whatever I think is necessary. That’s a good Endo/Patient relationship imo. :slight_smile:

If the Endo isn’t open to writing an immediate script for CGM then I would want to know why and it better be good. There are only UP sides to CGMs and your job is to convince him/her of that…the benefits are many.

  • Ability to see BGs every 5 minutes is HUGE in quality of life for everyone involved.
  • Ability to have the BG trending data is HUGE to the ability of parents to sleep at nights.
  • Ability to see that BG data will assist in knowing when to eat, when to bolus, when to correct, etc., etc.,
  • Ability to see that BG data will SAVE your son endless finger-sticks and significantly improve his quality of life.

I’m sure others can add even more good reasons why everyone (young and old) should have and use CGMs.


If you read no other posts, learn what the GLUT3 enzyme is. If you don’t understand the significance of it after reading the post, ask away.

When my Endo talked about Hypoglycemia, I actually asked her “Do you know what the Glut3 enzyme is and what it’s purpose is?” You’d be amazed to see the yes headshaking but little intelligent discussion about it from them. Why? Because, after your visit, most of them will run off and do their research to figure out how it’s VERY relevant to the bodies (brains) ability to get and keep a constant supply of glucose.

I love this post and learning about GLUT3 helped me relax a little when worrying about “lows” in general


When you do get the Dexcom prescription, be sure to check your health benefits and see if they will be covered under your pharmacy benefit vs. DME (Durable Medical Equipment).

If covered by Pharmacy benefits, it will save you a lot of frustration dealing with DME. Not a lot of plans cover as Pharmacy, but when they do it’s pretty awesome.


Your caffeine intake may not be normal, but right now it is necessary. Once you get the CGM going, you will be able to sleep more soundly since the system will alarm when your son is low. Once you get the hang of dosing and don’t grossly overdose your son you will also lose the fear about lows, because your son’s body will be able to manage these even with diabetes assuming you don’t absolutely crush the insulin.


@Dusty_19, welcome! I’m so sorry that your family has landed on this journey. But I am SO impressed at how you’ve jumped in IMMEDIATELY to give your son and your family the best care possible! FUD is the place to be for (1) Kindness, (2) Sound advice, (3) Emotional Support, (4) Generosity, (5) Friendship…and the list goes on and on.

I wasn’t diagnosed with T1D until I was 21 years old…so the kid specific part of the journey is probably outside of my wheelhouse.

But the adjustment process is something that I feel comfortable trying to be helpful with because T1D is an adjustment for everyone. So much to learn! So much to worry about! So much to sift through!

Your son is already going to be okay because you are fighting for him. You and your family are going to be okay, too. But the initial stages are definitely exhausting and overwhelming…I just say that to reinforce that what you are feeling is totally normal and okay. It’s hard to adjust when you don’t quite know what all you are adjusting to. Your family’s rhythm will change for a bit while you make room for T1D care. But it definitely gets easier. And like others have said, it’s so much better to face this diagnosis now than 10 years ago, 15 years ago, 20 years ago. We have so much technology to help us smooth down the rough edges of diabetes in our daily lives.

I’ve gone on to have a great career, two healthy high risk pregnancies, spontaneous traveling, countless outdoor adventures, etc. My life does look different with T1D but it is in no way “bad”. I just have to make room for the T1D.

I’m so glad that you are here! There are so many awesome parents of T1D’s here and T1D’s here! You are already in SUPER good hands! The same people who have rescued me a million times and become my lifelong friends are happy to help everyone!

By the way, I love your son’s Jurassic Park t-shirt and Carhartt hat. Looks like one of my boys!


Agreed. I have a large humalog stash if needed. You just need to ask.


Hi Dusty_19

My son was diagnosed about 6 months ago, so I cannot really offer any words of wisdom when it comes to treatment decisions as I’m really on the same side of the learning curve as you! (He, too, has a birthday coming up at the end of March! Happy Birthday to your boy!!)

Currently, we are on the strict “Don’t Die” MDI rules from the hospital, filing out paper logs that we submit for review until our appointment with his Endo

Oooph . . I sure hope the hospital staff didn’t refer to it as “Don’t Die” MDI rules . . . I don’t think I could have handled that! We too left the hospital with strict guidlines, ratios, correction factors, and directions to call every morning with his numbers. We did not leave with a CGM, but with a glucometer and insulin. In those first weeks I followed their instuctions closely, and really didn’t allow myself to think outside that box; the diagnosis alone and hospital stay (did I mention ours included life flight??) was more than I could bear at the time. But in short order, you’ll probably find yourself predicting their changes before you even call. By the end of those first weeks, I could usually predict, for instance, that they were going to change his breakfast ratio, or dinner ratio, etc. 9 times out of 10 I was right.

The REAL learning began when we got a CGM, about 3 months after diagnosis. It is a great tool and will be a game changer for you, for sure. Not pump yet for us (still MDI), but I’m pushing for that as well.

I really just want to say, if it offers any encouragement at all, that you are doing all the right things, even if it seems like you aren’t (at least that’s what I tell myself!!). I just joined this forum myself and was also blown away at the immediate response to my question and concerns. It was so encouraging, and if nothing else, it really made me feel like I had this “team” behind me.

Hang in there . . . there seems to be a lot of parents here that walked in those same steps you are now, myself included. The folks here have reassured me that in due time it will get easier and more routine, and I’m sure they’ll say the same things to you. Keep up the good (but oh so very hard) work!


Awesome, @diabeatit2020. This paragraph really sums up, I believe, for every parents experience during those first few weeks. After the first few weeks, you begin to think outside of that box and you will begin reach out less and less to the Endo/medical staff and eventually, you won’t ever be calling them and you’ll be making 100% of the decisions on your own (and WANTING to make them because we, as parents, want to do what we have to do to get the BEST control for our kids).

We want to limit the hypos (low BGs) NOW while ALSO limiting the hypers (high BGs) that matter when they get OLDER. Only a loving parent / caregiver can find the happy medium because, unfortunately, all our kids are just statistics outside of our own households. And we will educate ourselves and do what we have to do to ensure we give them the best chances NOW AND LATER in life.


Thank you so much! Yes my son is absolutely obsessed with dinosaurs and Jurassic park-

Actually no, that’s an understatement

He thinks he IS a dinosaur 75% of the time :joy:

I actually think I’ve spent so much money on Jurassic park toys that I should be a majority shareholder and have a seat on the board over at Universal Pictures at this point.

I’m so happy to hear stories like yours. It’s nice to know “normal” is attainable and nothing will stop him in life. I think the daunting part right now is just knowing that there’s many years of trial and error ahead. Thankfully, as you mentioned, with today’s tech., things are made much easier!


You guys are seriously the best. I hope I never have to ask, but knowing that you are all so helpful brings a little more confidence.

I hope one day I can extend my hand and pay it forward as well.


This is what makes FUD like no other diabetes forum that I’ve been a part of. We all have been helped so much by each other, and everything I have learned over the past five years has been mostly because of FUD. I’m glad we decided to build this forum. We all learn here and then pass that knowledge on to others here. It’s a wonderful circle of education that occurs here.

We also don’t judge. What you decide if best for your family is A-ok… In the world of diabetes there are a million questions and a billion answers. Much of diabetes is just figuring out what works for you and your family and then just being at peace with that. The only person I compare myself with is me… How can i improve what I’m already doing? Can i be doing something different, better or more streamlined to still meet or exceed my goals… But still maintain my goals and not change them to someone else’s goals.


I’ve read the linked topic a few times, but I was also somewhat preoccupied yesterday with birthday festivities and in laws.

From my basic understanding, if I recall correctly- the article states that the brain has a constant supply of glucose, even when BG levels are low, and that supply can remain constant at lower levels for longer than most people realize, in effect reducing any immediate harmful effects.

This is good to know, because for me right now, every passing minute outside of his range, high or low, I’m fearful of immediate and long term effects on his body.

Obviously as stated, this shouldn’t be used as a free pass to allow levels to maintain at extremes for days on end, but it’s also really cool to know that our bodies have sneaky ways of keeping things in check.


@Dusty_19 - that’s what it’s all about. Collectively we help each other out and pay it forward. We were all there once, lost in a sea of information with limited direction from the medical community other than “you’ll be fine.”

BTW, IMHO this (FUD) is THE BEST source of non-medically authorized information on Diabetes on the web. I have learned more here in just a few years than I have learned in the previous 20 - and I never once felt like I was being talked down to because of my lack of knowledge.


When my BG drops to 70 mg/dL my wife can tell that I’m subtly impaired. At 60 I’m getting stupid and if I tried to drive a car the impairment would be comparable to alcohol intoxication. Be conservative about the conclusions you draw from reading a paper on GLUT3.


The points I took from it are those eloquently pointed out by @Eric in the original post. It’s just nice learning that the brain has this constant supply of glucose. Additionally, knowing that there is no real scientific evidence linking lows to mental issues, lack of mental accuity, brain damage or becoming mentally stunted. There are very real threats of hypos and those should always be taken seriously…but being overly afraid of them is offset by the knowledge that the brain does have this constant supply. So, having that knowledge and working toward always making sure Liam is “in and out quickly” (for both highs and lows), that’s eliminated my personal “fear of lows”. That’s what I take from the GLUT3 enzyme knowledge.

My Endo preaches a “gloom and doom” view of lows…I don’t share that based on what I now know.

As @Eric put it


Absolutely. I never take in any information as an “end all be all” and understand that there is no one single constant when dealing with the human body. The more information at my disposal, the better informed I can be when evaluating my choices.