New diagnosis for my son

Newly Diagnosed Support
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Hi everyone. My son was just diagnosed (age 7). We were absolutely not expecting it after his pediatrician was confident it “wasn’t diabetes”…except it was and thankfully we caught it before DKA. Just got out of the hospital and I’m terrified. So so so scared of what’s to come. They did a great job educating us on how to dose insulin, how to calculate carbs, etc… but they made everything sound so scary and urgent. Like, if his blood sugar is 70 we have seconds to get him a juice before total meltdown.

I’m just a really scared mom who keeps crying in private so my little guy doesn’t pick up that I’m so worried. He’s a very sensitive kid and I just want to give him the most normal existence possible while supporting his new condition. I know that we don’t have to restrict foods, we just correct for them and lead a very balanced diet regularly. I’m worried about school (since this happened over the weekend we haven’t met with the nurse). I’m worried about him going low because he’s insanely active.

Everyone I’ve talked to said that this just kind of becomes the background on which his life will be built, not the star of the show. That’s comforting but the future is really scary.

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Hi @cuteemoshannon and welcome to the forum. I’m sorry to hear about your son’s diagnosis. You’re at the base of a huge learning curve but as you learn with the help of an endocrinologist and nurse educator things will hopefully get better. I highly recommend you check out the book Think Like a Pancreas by Gary Scheiner. He has Type1 diabetes and works in the field so has a unique personal perspective that is particularly helpful. I’ve had Type1 for over 60 years and when I first read it’s couples of years ago I learned some new things myself!
It’s a continuous learning process, part of which is learning how your son’s body reacts to things: exercise, insulin, various foods and other things. I don’t mean to overwhelm you - take a deep breath and remember it’s a process. Keeping a log will be very helpful, and necessary to help determine how things are going. Of course you can use paper and pencil but there are a number of diabetes trackers too: I use Glooko, and some other popular ones are MySugr and MyFitnessPal (both free) and MyNetDiary (annual subscription).
Lows are scary, but your doctor will discuss a continuous glucose monitor (CGM): a CGM does not control blood sugars but it does let you keep track of where the numbers are going so you can take action if you need to.
Kids in school need a 504 plan which, very simply, tells the school how to respond in the event they need to treat him. You’ll be working with his doctor regarding the particulars.
Here’s a link to a website with information on students rights in school and what schools need to provide: Safe at School | ADA
I know that’s a lot but remember to take things one step at a time. I was diagnosed at age 3, before we had plain old glucose meters much less CGMs. A number of us are on the forum so know that your son can live a long, full life with diabetes.

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Hi @cuteemoshannon welcome to TypeOneNation. I hope they connected you to a CDE (certified Diabetes Educator) because generally doctors come in 2 types The first hand you a bunch of scripts and give you instructions such as “try not to die” and the second attempt to scare the heck out of you.

Your kid is tough and this is not the end of days.

Typically, low blood sugar comes with sweats and tingling and numbness and he will know way before it is an emergency because it feels terrible. That being said you will always need to have carbs handy- skittles, tootsie roll, something sweet that works fast.

The next thing that happens is “honeymoon” where he starts to make insulin again and his blood sugars are low and perfect. This can cause anxiety because you may think that this really isn’t diabetes and all kinds of things may cross your mind.

Kids are indeed tough so don’t get crazy with high and low blood sugar. I have 45 years experience with type 1 and I can tell you that there is no such thing as “well regulated control” type 1 is a kind of a hour by hour decision and experience thing and your job is to learn one, do one, and then teach one thing at a time. High or low blood sugar is not a judgement, it doesn’t mean you are bad or that you are failing. High or low is an indicator, it gives you the information to make the next best decision for your kid. That’s all it is.

I also recommend “Think Like a Pancreas” it is a great book and worth every penny.

Try to get involved with the JDRF in your area, you can go to the tab above or just click here and put in your zip code https://www.jdrf.org/chapter-finder/ you will find a bigger local network of support when there are fundraisers and JDRF walks for example.

Keep us updated! You can do this. In about a year you will be an expert I promise.

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Something to keep in the back of your mind - there are summer camps for kids with Type1 - every child and perhaps many or most of the counselors are living with it. I went a couple of summers when I was young and it was fun for me as well as a break for my parents, who knew I was in the best of care. You may not be ready to send him packing this summer but maybe in the future.

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Yes we do have an educator and a 24 hour hotline we can call, and they encouraged us to at any time. Thank you for your helpful words :heart:

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Deep breath @cuteemoshannon please reach out with questions anytime.

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@cuteemoshannon Welcome Shannon to the JDRF TypeOneNation Community Forum!

@Joe has already written much of what came to my mind while reading your post, so I won’t repeat. What I will add, especially because you described your son ‘an insanely active’ 7 year old, is that you won’t easily “break” him and neither will diabetes by miscounting carbs, forgetting an injection, or when his BGL might shoot up to 345 or drop to 53. Heaven only knows how many times my ‘blood sugar’ was lower than 50 or higher than 400 since I was diagnosed in the 1950s when a simple blood sugar test, in hospital, took 2 - 3 days to get a reading. As Joe also pointed out, the readings from a meter or continuous monitor are not scores, but rather guideposts to alert your son when action is needed; the more important guide your son will develop, with your help by observation, is the “how am I feeling NOW”.

Shannon, you have every right to feel scared and frightened (yeah who am I to grant ‘rights’) for your son about diabetes because it can be, and is, a very serious condition, BUT it can be effectively managed and diabetes will not impair your sons progress accomplishing his wishes to live a long, a happy, and a productive life.

We, this Community, is here to support you along the way with suggestions and tips that have worked, or didn’t work, for us as individuals. Do try the link to find a JDRF Chapter to see if there are meetings or events you might attend; this week I will be attending a monthly “Cups of Hpoe” event which will be attended moistly by parents of newly diagnosed, a featured speaker, and a bunch of long-timers like me to respond to questions.

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Thank you Dennis for your kind words. He just had his first low reading today, 56, and we did what they dubbed the “oj protocol” or the 15/15 rule. It went back to normal quickly and he went about his day. He was able to tell us right away he felt shaky and weird, which I was so worried he wouldn’t know how to mention or he’d wait too long.

I’ll try to find a support group in my area! I don’t have any family support and a pretty small friend group so I could definitely benefit from meeting others in this new world.

Thank you again

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@cuteemoshannon I’m sorry to welcome you and your son to the club that nobody wants to be in! First thing they should have told you: Diabetes is a marathon, not a sprint, so take a breath; I know, easier said than done…particularly with a young 7 year old, but try to do it. Second, if someone actually told you with a BG of 70 you have seconds to act (unless there’s something else going on), the person did you a big dis-service. If that case presents, and it likely will, you should be concerned, but there are other factors you have to look for: is his BG still falling, how quickly, what do you have at hand to treat him, how much insulin is onboard, and several others. Does it sound scary, yes, but treating that kind of situation will become second nature to you and to him, you’ll both learn what to do to correct the situation.

You’ve made a good find with this site and the people here will offer good advice. Your job is to sort out who to listen to, who not to listen to, and what works best for your son; even among medical people, you’ll find some don’t know what they’re talking about, others that do…it’s your decision who pay attention to. Here, there are people with literally decades of experience, newly dx’d, and everything in between. SO, take some time, get your thoughts and questions in order, and ask what questions you have to help the people here guide you to the extent you want and need. The first few weeks are like drinking from a fire hose as you learn your way. Just know that you are the decision maker, even the doctors and nurses are YOUR advisors, but you and your son get to live the life and deal with the results…no pressure, right?!

Some preliminary info we’ll need to help you the most: 1) Presumably, your son is Type 1, is that correct?; 2) Did they prescribe insulin? If so, what type/brand?; 3) Did you get set-up with a CGM or insulin pump? If so, which ones?; 4) Do you have an Endocrinologist? Do you want/need one or is your PCP handling things?; 5) What questions and support do you want from those here?

You may want to look locally for a JDRF chapter or other support organization and if you let us know what region you’re in, someone here probably has some references for you. Alternately, just go to the JDRF website and look it up.

Again, the best advice I have is: Take a breath, let your son take a breath, then begin this journey with the idea you state: He can and should have a pretty normal life, there will be challenges to overcome and they may look mountainous now, but you and he together can turn them into rolling foothills.

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Hi thank you so much! I am like a chicken with their head cut off running around gathering info and just trying to organize and stay focused.

  1. Presumably, your son is Type 1, is that correct?
    Yes, he’s type 1.

  2. Did they prescribe insulin? If so, what type/brand? We got short and long acting. Humalog pen and Lantus long term.

  3. Did you get set-up with a CGM or insulin pump? If so, which ones?
    We hopefully get a CGM when we meet with the diabetes educator next Friday, my insurance covers a Dexcom 6 and freestyle Libre so it will be one of those. Pump they said is months down the line, they want to get a baseline of his needs first.

  4. Do you have an Endocrinologist? Do you want/need one or is your PCP handling things?
    We have an endo, she’s great so far and we really liked how attentive and knowledgeable she was. She even called me back within 3 minutes today when I called the hotline. I’m glad our PCP isn’t handling things, he was dismissive of my concerns and I will be switching because I never want my child to see him again.

  5. What questions and support do you want from those here

I would love if anyone could direct me to any south Florida based parent groups on social media or in person, it seems my chapter of JDRF isn’t very active unfortunately

I’d also love any school resources to make the transition back to school good. Stories, experiences, methods that worked.

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Hi!!
I am also a Type 1 diabetic and here to tell you everything will be okay! I was diagnosed at 17 months old and am now 21 and in college. I am so sorry that your son was diagnosed but just as you mentioned this is a difficulty that will always be a part of your life, but after time and practice it will no longer feel like such a roadblock. I want to say that after 21 years of having diabetes missed doses of insulin, too much insulin, and not having your levels be perfect all the time is a part of the journey. Soon you will learn how different foods affect his levels and what type of activities cause low blood sugars. I think a really large part of managing diabetes is having a good routine. I know this can be difficult, especially for a kid, but getting into a routine with doses of insulin and eating will help his blood sugar levels be more predictable. As he is an active kid some things I do to make sure my level stays well before being physically active is always keep a juice or fruit snacks nearby and maybe eating a small snack before. I also think that with time you will determine how the activity at certain times of the day affect his blood sugar which will help you to know how to navigate it in the future. I also think that lows are non-avoidable as a diabetic and as they are a bit scary as long as you have something available to get his level up being at 70 will not lead to a medical emergency.
I also saw that someone mentioned the summer diabetes camp which is something I attended when I was younger. I honestly loved the experience and was able to connect with other type 1 diabetics my age. I would definitely recommend as it can be really challenging growing up with a chronic illness that sets you a part from everyone else.
Lastly, I wanted to say that I know the new diagnosis can be really scary and daunting. This time of your life will not be easy and dealing with a chronic illness will continue to put you and your son through challenges. Although all of this is true, as I mentioned before I was able to move to a different state for college and manage my diabetes with no problems. Being a diabetic has taught me so much and has even inspired me to go to school to become a PA. Your son will certainly be able to do all the things you had envisioned and beyond!

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@cuteemoshannon
First, I’m not a doctor, nothing contained below is medical advice. You’re new to T1 and should discuss all treatments with your doctor!

Type 1. Good to know, it orients advice.
Humalog pen and Lantus Ok, here comes some “fire hose drinking.” Humalog and Novolog are very similar; for most folks nearly interchangeable for effect and dosing, something for you to tuck away for future use (insurances sometimes limit/change which they cover). (I’m on Novolog and was on Lantus until I started using a pump (most pumps use fast acting insulins usually used for bolusing for meal carbohydrates as well as for basal use (think background insulin between meals and while sleeping). Insulins can come in different strengths, most people use U100. Your doc should have estimated an ICR (Insulin to Carb Ratio) for the Humalog; its personalized based on your son’s weight/size, presumed insulin sensitivity. Humalog counters to the carbohydrates in your son’s meals/treats. It starts taking effect in 15-30 minutes and lasts in most people about 4-6 hours. So there’s some planning you’ll need to do regarding when to give his doses prior to eating and checking his BGs with test strips afterwards to check for rising/falling BGs. The first few weeks (or until you get a CGM) you’ll likely want to check before eating and afterwards every hour for a couple of hours (he’ll likely complain about finger sticks (I recommend getting 32 gauge needles/testing lancets, they have less impact). Lantus is a basal insulin (think background insulin to counter blood sugars released by the body all the time). Lantus lasts about 24 hours with a very flat curve of action. Lantus is usually given once a day; but for some it lasts a shorter period and to even things out, some will split their dose (morning/evening). Caution: A mistake most of us have made is giving fast-acting insulin (your Humalog) in place of slow-acting (your Lantus) or vice versa. I recommend separating where you keep each one to avoid the issue. When/If it happens, most of us have recognized it almost immediately, don’t over react, but address it logically. I gave myself Novolog instead of the intended Lantus about two weeks into my adventure (I got dx’d very late in life). The wife and I stayed up for 2-3 hours, checking my BG every 15-20 mins and eating fast acting carbs (glucose tabs and orange juice) and finally got to bed when I figured I was safe. If it were the other way around, Lantus for Humalog, it would have been a much longer period of checking BGs.

We hopefully get a CGM when we meet with the diabetes educator next Friday CGMs, for all our complaining about them (they do have their drawbacks) are fantastic. They let you monitor without (for the most part) frequent finger sticks and let you and your son monitor his BGs remotely. Both the Dexcom G6/7 and Libre 2/3 have apps that let you do this. Take advantage of them. There are also third-party apps (Sugarmate, Nightscout, and wealth of others) that help you take advantage of the data, help you figure out more accurate ICRs, insulin sensitivities, Time in Range (TIR), etc. In my opinion, a CGM is as life changing/normalizing as it comes for T1s.

Pump they said is months down the line They are right that you need to get a baseline established for basal rates, ICRs (it can change during the day), and ISF (insulin sensitivity and also changeable during the day). That said, this can be done in a short period (days/weeks), depending on whether your son is honeymooning (natural insulin production can take time to stop or occur quickly). You both need to know the basics of treatment with pens, needles, vials, etc. But some Drs, NPs, CDCESs, and parents want to start pumps quite soon. It’s a choice, one you and he will have to decide on. The choices will likely be constrained by your insurance coverage due to pump costs. Choose carefully as some pumps have “warranty” periods and insurance won’t pay for another pump until the “warranty” period is over.

We have an endo, she’s great so far and we really liked how attentive and knowledgeable A good doctor/Endo that knows their stuff, returns calls, and is personable is like gold; if you found one, try to keep him/her. Even better is one that realizes right now you need info, that you’re drinking from a fire hose, but soon you’ll be almost as educated on T1 as they are and in the drivers seat, that you and your son live with the results and make the decisions. Unfortunately, those like your PCP aren’t rare and I appreciate your perception and planned action.

I would love if anyone could direct me to any south Florida based parent groups…school resources…
I don’t know south Florida and will leave that to others. Regarding school, do a search for 504 plans on this site, JDRF general site, and others. I haven’t had to face this aspect, but others have and I’m sure you’ll get some great advice. I know some schools/districts have excellent reputations, others not so much, but you have some federal requirements most all schools have to meet if they want federal funding support and to meet federal law. To get started, check: Section 504 Plan | ADA.

I hope the above is helpful, others will obviously respond as well…

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I would just like to add a note to the wise advice @Tlholz shared: please remember that members of the forum are not medical professionals, so we share suggestions of things to try but we can’t give medical advice; so your doctor should be your first point of contact for questions or specific guidance. People are so used to searching for advice online I wanted to make that distinction.
Regarding CGMs: Dexcom and Freestyle are both excellent, although some people find one more accurate than the other. I believe Freestyle is less expensive than adexcom because it does not have all the"bells and whistles" Dexcom does (Dexcom works along with certain pumps so they can adjust insulin flow based on readings - Freestyle does not). If cost is an issue and your son is not in a pump yet, Freestyle may well suit your needs. Insertion is quick - there may be a tiny bit of pain as it goes in but it’s over quickly.
Also, pumps are great but many people do quite well on injections, With the exception of Omnipod most require a 4 year commitment, so if your son is hesitant about using one don’t feel pressured to make the switch.

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Hi,
I was diagnosed right before my 7th birthday and I’m still here 32 years later, even though I had access to way less technology and fewer options than your son does. I’m not a parent and you’ve already been given a lot of great advice, so I don’t have much to add beyond that little bit of reassurance, but I did want to share some resources I learned about recently. Stacy Simms was one of the keynote speakers at the the Type One Nation Summit in Boston a few weeks ago. She wrote the book World’s Worst Diabetes Mom and she hosts the podcast Diabetes Connections (https://diabetes-connections.com). I thought she was both insightful and funny and I bet she’d have a lot of great advice for you in her book and/or podcast.

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It is so so sad to hear “educators” scare people. Type 1 Diabetes (T1D) is the most controllable of the 2 or 3 versions now. You will have tons of trial and error for a few months and remember it is you for the time being, but mostly your son’s disease. Only he will know how he feels and in a year or so, he will be able to do most on his own. I do VERY highly recommend you work to get an insulin pump. It makes our life about as close to normal as you can get. The 70 number is also fluid. Do keep in mind that even drinking orange juice or taking glucose tabs does not produce an immediate fix. It will take at least 15 minutes but as long as you treat it, there is nothing to worry about. In fact non diabetics also have highs and lows. The only difference is their body fixes the issue. For us, we have to be the fix. Again, do not be scared, just be smart and your son will live a normal life in every way. I found out I was T1D at 12 and I am almost 68 with no complications of any kind. I have been using a pump for 30+ years.

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Stay strong and it’s wonderful that you found this community. Is he wearing a CGM? If so then it will be easier to monitor when the lows happen and how to correct/etc. my son is 2. His daycare is wonderful. They hear/see when he goes low because of his phone. I also call there as well because there are times they need to wake him up from his nap. We use a phone as his receiver instead of the actual receiver. That way we can follow his numbers and so can his endocrinologist care team. And we pay for phone service with the phone because so-fi goes out sometimes and we didn’t want to worry about that. Good luck! And keep us posted. The school nurse should help administer the insulin so you won’t have to go at lunch every day.

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I used the 24 hotline probably a few times a week the first few weeks. And questions during the day I called the care team. The 24 hotline is great if you have dosing questions. Anything not having to do with actual dosing for a meal during real time I saved for the daytime team/line.

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Where in south Florida are you? East or west coast? I’m in southwest Florida and the chapter is active

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Hi Shannon, In addition to all of the great advice others have posted here, you might find this book helpful: Newly Diagnosed | Sugar Surfing
It’s free to recently diagnosed T1Ds.

As many have said, a CGM will be very helpful. Make sure your son ALWAYS has fast acting glucose with him. Glucose tablets are sold in every drugstore. A small (4.23 oz) juice box will also work perfectly when he’s low.

Many like the Juicebox podcast series, you can start with this one: #1000 Newly Diagnosed or Starting Over (REMASTERED Diabetes Pro Tip) — JUICEBOX PODCAST

Good luck !

Joanne (51 year T1D)

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Sorry you and your son have joined this exclusive club. As others have stated, a CGM will be very helpful for you and your son. It can share the sensor glucose numbers with you, other care givers, and school staff. You don’t have to do this alone.
All the best to you and your son. You’ve got this!