New Dad trying not to freak out

My 16 year old son was diagnosed T1D Oct. 10th. Started insulin on 11th. His BG #s are still very high (according to the little I know so far), going over 350-400 on highest readings and low 200s on his lowest. I know everyone’s body reacts differently and teenagers can be tricky due to hormones, etc. But how long does it take before #s start coming into target range? He lost a lot of weight before diagnosis. I worry about long term health if #s stay up. I know 2 weeks is not much time treating this condition. Do I just need more patience? I’m learning, but you know … I worry.

@rjfoley Robert. Welcome to TypeOneNation. Patients. He is going to start making insulin again (honeymoon) that’s why they are being conservative After that he will be dependent on insulin and control will be tricky but manageable. I hope you have access to a CDE. We are here to help Please reach out if you need support

(Joe @joe was posting while I was typing the below. Didn’t mean to plagiarize your post, Joe.)

Hi, Robert, @rjfoley

How accessible is your son’s physician/endocrinologist? He/she should have a “plan” (a schedule) for how he/she wants to see your son’s blood glucose levels gradually lower over time and, then, become as well managed as possible. I would reach out to your son’s physician, explain your observations and concerns, and then ask, “What’s the plan?”

It takes a period of several weeks/months for things to settle into a, well, “rough” routine after diagnosis of T1D in a teenager. And, as time passes, you learn to “roll with the punches,” making changes when “patterns” indicate the need for a change.

It is prudent to expect a youngster with T1D to go into a “honeymoon phase” soon after insulin therapy is begun. With that in mind, knowledgeable physicians start patients on a lower dose of insulin than seems appropriate for their body weight. As the honeymoon phase disappears, the amount of insulin is gradually increased. Doing things this way prevents sending a youngster into a severe hypoglycemic episode soon after they are discharged from the hospital (after diagnosis and initiating insulin therapy).

Some people don’t demonstrate a honeymoon phase after diagnosis. The only way to know if a honeymoon period will develop is to begin conservative treatment, sit back, and watch. After several weeks if the youngster exhibits a need for more insulin, then you up the doses.

Visit with your son’s physician. Ask for guidance, and ask for a “rough plan” that gives you a week-to-week sense of what needs to be done.

I hope this helps a bit. I wish your son and your family the best of luck with managing his diabetes. It isn’t easy but it can be done.

Bill

I’m 16 and diagnosed this yr too. I lost 20+ lbs and I was high for probably a week or too after diagnoses then my #s started to get better and they stayed under 200 for probably 3 months cause of honeymoon. I’m using a lot more insulin now since I’m 9 months into diagnoses and I control my #s best I can but it’s a lot of work and a lot of times I’m high (like rn). Anyways dont expect perfection cause that will never happen no matter how hard u try but yeah I hope all goes well for u guys.:blush: and u probably should talk to his endo cause it sounds like might need to adjust his insulin

Thanks for the reply. It’s good to hear from someone who is dealing with the same issues as my son. It sounds like your doing well and it helps me maybe not worry so much. God Bless you and stay strong.

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I agree with what some posters have said, but this is a self managed disease. You see the endo once every 3 months and at best, they will put him on a sliding scale with how much insulin to take at meals based on his current readings. To truly master this disease, or atl least try, you need to know how much a given amount of carbs affect blood sugar and how many carbs will be covered by a unit of insulin. This is known as the insulin to carb ratio. This ratio will vary based on exercise, weather, season, sleep etc. there is nothing constant. My best advice is read, read, read and experiment safely. Always keep fast acting carbs handy. I go nowhere, and i mean nowhere without a bottle of soda or juice box. Get him a cgm for real time blood readings if affordable. Its a necessary tool for controlled glucose in my opinion. As others have said, it will get easier. Especially once you know how the insulin will/should act given the current situation. Go slow at first. Its very doable and good luck.

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@rjfoley Welcome Robert to the JDRF TypeOneNation Forum! I hope that you, and your son, will find needed support here.

You’ve receive good information here and I’ll just offer support - and emphasize the need to patience and know that your son will develop good diabetes management skills over a period of time; and yes, he will gain back weight and be able to maintain a good healthy weight.

I too was diagnosed at age 16 - to sick to get out of bed on my 16th birthday and had my first insulin injection the next day. That was 63 years ago and over a period of a couple of months got back to my 145 lbs. after dropping to 120. Insulin these days is wonderful and really easy to give and very effective, but it will take time for your son to find the delicate balance between food, activity and insulin; I completely “lost” that balance last week by not finding the ‘hidden carbs’ in restaurant food three days in a row.

Encourage your son to learn what he can about living successfully with diabetes - there really isn’t any reason diabetes will keep him from living a full, active and long life; there are many teens on this site who have formed wonderful support networks.

Hi @rjfoley and welcome to the forums. I just wanted to let you know, if you’re not already aware, there are a number of diabetes trackers on the market. I imagine your son’s doctor has instructed him to keep a record of things to help determine what his body needs and when. I was diagnosed in the early 1960s and tracking was done with paper and pen. I’ve tried a few and tracking apps and chose to go with MyNetDiary, but there are many you can check out and download on a smart device to keep records. Your son will need to be brutally honest and track everything, which is painful for us all; but in doing so his medical team will be able to determine what needs to be adjusted. In addition to recording the obvious items such as meals and BG readings, it’s helpful to note sleep (how much and how well), exercise (what type, how vigorously, and for how long), and overall physical and mental health ("[hardest class] final tomorrow morning - have a stress headache"; “have a toothache - hope it’s sinuses and not a cavity”; “had a slice of cake at my cousin’s wedding. Okay, really two…”
When it comes to exercise, I’ve heard some people say that a particular exercise or exercise type affects their numbers much more than others - I knew a woman who said a bike ride first thing in the morning gave her great control for the day, while jogging or walking didn’t have the same effect.
For myself, I’ve found that unexplained highs may be my only symptom of some sort of infection. I’ve had UTIs with no pain or symptoms whatsoever other than high numbers; and if I have high readings along with the slightest bit of mouth pain (which I sometimes write off as sinuses), I’ve learned to schedule a visit to my dentist right away: I’ve waited only to discover that the tooth is dying and I need a root canal. Having had 3 or 4 now I finally learned to have the pains checked out before the BGs come into play - better safe than sorry.
Some people are fastidious about record-keeping and record every last detail even once they have things balanced and working well. I myself track my meals and BGs, and only note exercise and other factors occasionally. My doctor asks about them at each visit and it works for me to discuss them in a general fashion as opposed to showing her records of every time I walked the dog. Hopefully once things are on track you’ll determine just how much you need to keep logged. But for now, as he is getting settled in, I would recommend recording everything for a few weeks so the doctor can look for patterns. Wishing you all the best.

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Hi a CDE for over 20 years here.
Please be in touch regularly with your Endo if you are concerned.
Each person is unique in what their body needs and it is important to let them know what is happening.
If you don’t have a continuous glucose monitor I would suggest one such as Dexcom g6. It can see patterns and your MD or NP or PA can see patterns and make decisions from that information.
It is also peace of mind for you .

Make sure you get into the best diabetes program near you. They will teach him how to navigate the complexities. Remember everything is hard … until it isn’t. He’ll be ok. And if you don’t like the endo keep looking till you find one that makes him feel good and empowered

Your son is still in the “honeymoon phase”, some of his islet cells are still producing insulin. This maybe part of the problem, but I would let your endocrinologist know about the sugars. The amount of insulin may need to be adjusted. When the honeymoon phase is over, your son will do great on a pump. Also, I would ask your MD about a continuous glucose monitoring system. We use the Dexcom G6 and it has made a world of difference. Since my daughter is autistic, she continually forgets to put her carbs in the pump and has high sugars. Hope this helps.

Whoa! Your overwhelmed! It’s a wild ride your on now! It’s gonna go up n down and all around! At times your gonna be totally blown away others think you got it under control and then blame! Outta control again. Patience and more patience and diligence is required right now!
The other half of this is you are only an observer! Your son is the major player here. There is only so much you can do or say or make him do! Ultimately he’s in control. Tough thing for a Dad to have to do. Realize this and accept it. Not an easy task. This is only the beginning. It is NEVER going to be in your power to fix this!! As much as you want to, as much as you need to, you have to trust that your son understands that he has got to take control and try to manage this disease!
He’s gonna screw it up and do stuff that you know he’s gonna do and I told you, will have no effect or change the future you can see for him. He’s gotta learn this the hard way. Just hope and pray that what you have done raising him has sunk in and let it work.
There is one illusion that remains constant with this disease! If I do what I’m supposed to… everything will fall in line and I’ll be okay. N O T! It’s gonna do what it’s gonna do! All you can do is react to it hour by hour , day by day, week to week. For the most part everything will fall in line and be just peachy, but there are gonna be days that just suck and nothing you or your son does is gonna make any difference!, just knowing this helps. Murphy is not on your side in this at all!!
With hard work, patience, understanding, hope, prayer and a little luck things will hopefully work out and overall smooth sailing! Just always remember, no matter what you want to do, no matter how hard you try you CANNOT do this for him!
The best you can do is be there. Help as much as you can, teach what you can, be supportive when you can. But other times it may be tough love that works. This is not like many other diseases that follow a specific path. It’s individual as it can get. Everybody is different yet only the same. What works for me, may or may not work for him. Only time will tell!
Your in for a rough few months, maybe! Maybe not! Just slow down take it one day at a time react when you need to, be adaptable and hope things go easy.

Good luck
Charlie

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Charlie, and everyone else, you have this so right. Decades ago I learned, the hard way, that no one can “CONTROL Autoimmune diabetes” but that we can successfully manage our own diabetes so that it fits into our lifestyle. Yes, a lot of study, effort, trial-and-error but it can be done.

And @Charlie4801, as you say we each must do it ourselves and that no one else can manage our diabetes for us. What does make this DYI Project more successful is having [knowledgable] support from from those who love us and respect our efforts - and from professionals who truly know-their-stuff and are willing to guide us.

This is from a 13 year - long diabetic — Dorie’s post is the best, from much terrific advice.

I have kept a written log ( my dia-log:>))) all these years. Some days the record is well kept, others not so good. On one side of the notebook is the record – on the opposite, comments to myself — from pats on the back, to warning what not to do, to ideas. The part that is as important as recording the numbers is YOUR INTERPRETATION, e.g. if my number is high, and I know the piece of cake is responsible, I will remember to adjust.
If it is not clear, I think back and try to understand, to remember what might have caused it.
Also, for the last few years I am sufficiently knowledgeable to able to compensate a low with a snack and also a high, with insulin,bearing in mind how much I injected last and when it should peak. My endo suggested I do this years ago, but I never felt secure enough to try. The challenge is not to overcompensate in either direction.
Coping with diabetes is not easy, but then, what is?
Marina

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I have 2 sons with T1D. They were diagnosed 4 days apart at ages 7 and 13, with the 7 yo first. At the hospital they said “thank god it’s not your teenagers, because they are the WORST”. 4 days later, my teen was diagnosed. As many have stated, stay educated. Both of my boys are on Dexcom G6 and Omnipod Dash. If your insurance doesn’t cover it, FIGHT IT. We did, and we won! As for the teen issue, it will likely be a struggle. In general, they think they are invincible AND they want their parents to stay out of their business, two TERRIBLE qualities in a T1D. My kids were diagnosed 3+ years ago. My youngest is a T1D ambassador. My older one… not so much. BUT, while we still have to stay on top of him, his A1C has always been between 6.2 and 7.0, so it’s still possible to help an unruly teen stay healthy. I’d offer up my 16 yo as someone to talk to, but he refuses to talk to anyone about it. Maybe yours would benefit from that, though. There are many teen groups out there for T1Ds to socialize and support each other. Anyway, I know it seems like rambling, but it’s been a LONG 3 years, and yet my boys are doing OK.

Awe! It’s going to be okay! I think at the beginning it’s actually safer to be running slightly higher than lower. Keep in contact with your endocrinologist and slowly they will likely increase his insulin and his BG readings will come down.
This is a tough time but as each day goes by it will get easier. There will always be times of learning with this condition - I have had diabetes for 36 years and I still am learning and it is frustrating and it sometimes just really sucks still, but it’s part of life and we live and we learn and we thrive and we enjoy life as per usual. It’s a life changer yes, but that doesn’t have to be negative. You’ll get over this hump…until the next one, then you’ll get over that one. You have so much support out here. Just keep in touch and keep asking questions. And if you have a good dr, he/she will walk you through this. And its not a bad idea to seek out some counselling for you and especially your son. That’s my biggest piece of advice which your doctor probably has already mentioned. I’ll be thinking and praying for you and your family.

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Hello my son is 12 was diagnosed sept 11 at the er with a blood sugar of 786 :(. Starts insulin that night slowly and after a week in the hospital his levels were still at the 250-300 literally just a week ago his levels are a bit normal with some adjustments from his doctor … he’s only been a diabetic for a month and his endo has changed his chart about every week trying to find his medium and even though bs is 100-150 which is normal I was told don’t get settled just yet because this the honeymoon stage and it will fluctuate for about a year :confused: Patience is the key and it is not easy especially with a teen who’s moody and hungry

I can remember how upset my father was when I was diagnosed, relax , get him and you educated, a insulin pump and a cgm , will give him a good life , 40 years later I’m total fine !! Dont be afraid ot might be scary but 6months from now you will be getting it , I’ll pray for you

Hello. I’m sorry to hear if your son’s diagnosis. I just want to concur what some others have said and maybe add something if one else has.

First, I was diagnosed at 19 in 1977. I have been able to graduate college and work decent paying jobs and will be retiring soon. Your son will be just fine if he follows the plan fairly well. Work with him and help him when he needs it. He needs to be able to do it for himself. A diabetic has to their own doctor.

The thing I would add is even if he does stick to 100% to the plan, there will be problems from time to time. “Control” is an over used word in the medical and device manufacturers lexicon. It will never be 100%,

It’s not ideal, but let’s just thank our lucky stars were all weren’t born 150 years before we were or we would have all died young.

Hi. I see you’ve gotten some great advice so I’ll try and keep mine short. I’ve had T1D for 42 years and am fairly healthy. Being a teen and having T1D at the same time is very challenging. Most teens will get tires of all they hav to do to manage it. Stay on him and check his meter daily. Communicate closely w his Endo and go to as many educational classes ass possible ( he needs to go too). A cgm is a great start to help w management. The freestyle libre is fairly inexpensive. His hormones will change and this will affect his bs. My Endo told me a long time ago that everyone’s body goes through changes every 7 yrs so be ready because you’ll know notice that was was working for so long is no longer working. Insulin pumps are great for management. Many states have summer camps for T1D and I strongly recommend it. It helped me feel normal. And I learned so much and made great friends. Good luck.