Hi there, I'm new to tudiabetes - thanks for all the welcome messages!
My son just turned 12 and was diagnosed six months ago. He had been getting very lethargic, drinking a ton, and peeing constantly. Luckily we figured out what was going on before things got too bad. We thought his energy would return once we got his BG inline. We had 5 great months while he was honeymooning with very few lows and no highs whatsoever. His energy levels have improved a little but no where near what we had hoped. In the last month he seems to be coming out of the honeymoon, more highs, and more and more insulin needed, he's also growing like a weed.
So to get to my questions, has anyone else had similar experiences with lack of energy and lethargy? He often has to come home from school early (probably once a week) complaining of feeling bad, mostly stomach aches. He also needs a lot of encouragement to get active, even though he usually feels better after some activity.
Thanks all, this seems to be a great on-line community, very supportive, and with lots to share :)
Always nice to see another Canadian join. Again, Welcome to the TuDiabetes family!
This is something that is all too familiar. I can recall numerous occasions where I felt drained, or just in general disarray to what I considered to be "normal." (I was diagnosed over 3 years ago in my mid-twenties, and have been on an insulin pump for the past couple of years.)
What I've found is that keeping my levels as consistent as possible has helped normalize my energy levels, and my overall wellbeing. It's not an easy task though, and you definitely have to be on top of testing and adjusting insulin. Is your son using an insulin pump, or on multiple daily injections?
When your son comes home from school early, how are his blood glucose levels? Is he running noticably high? It could be that you need to make some adjustments to his dosing for that window of the day. He's also at that age where his body is going through a hormonal nightmare, which is going to make things harder to keep on top of as well.
Puberty is hard enough without diabetes to complicate things. Hormones & growth spurts play havoc with BG. As your son grows, his insulin needs will be constantly changing. Feels overwhelming to keep up with.
When he's feeling lethargic, how's his BG? I feel as he does from lows. It's particularly energy draining if it's a rapid drop from a high. Bouncing between highs & lows wipes me out.
Something else to consider is the emotional impact of diabetes. Diabetes exacts a tremendous emotional toll. Partly due to the role of inconstant BG, but mostly because of dealing 24/7 with a chronic disease that demands attention. Your son's stomach aches & lack of energy could also have an emotional component. We get so wrapped up tending to BG that the person's psychological state takes a backseat to the numbers. Maybe you could talk to him about that part. Diabetes can be an isolating disease. He's no longer the same as his friends. Anything going on at school to upset him?
thanks for the reply, he doesn't seem to be particularly high or low. He's not on a pump, uses Novorapid and NPH, we're hoping to get him on a pump by the summer - seems like pumps offer a lot more flexibility that NPH doesn't. The hormonal nightmare is there for sure :)
Thanks for the input! Could certainly be emotional - his friends all seem to be pretty supportive and they all still seem to be around. It's hard to get him to open up about what's going on though.
His stomach complaints made me question how he's handling the monumental change in his life. Not an easy subject to talk about. All I could say when I was diagnosed was that I didn't feel like myself & how terribly unsettling that felt. Overnight I became a different person. World turned upside down & I was scared. Can only imagine how this feels to a 12 year old. Would have made me feel understood if anyone had said-- bet you're scared & angry, how has your life changed, how do you feel about this?
Pumps definitely offer a lot of flexibility that multiple daily injections doesn't, but it also tends to be more work. The convenience and benefits definitely outweigh the negatives though.
For one, when you're pumping insulin you are able to adjust your insulin basal rate throughout the day and in much smaller amounts. The daily injection of your long lasting insulin makes this impossible, as once the insulin is in its active for anywhere between 12-16 hours. On the other hand though you have to be more on top of everything because you are now relying solely on short-acting insulin, which means that you can only be without it for short periods of time (usually less than an hour).
If your son's averaging a relatively stable bg across his daily tests then you're already off to a good start. At this point in his life you're only going to be able to do so much, and at the rate things are changing you're going to be making all sorts of changes to his insulin regimen.
The initial diagnosis throws us all for a loop, and sometimes we can fall victim to trying to do too much too quick while neglecting other aspects of our lives. He might also be feeling disconnected, or be having trouble wrapping his head around the changes as Gerri suggested.
Lots to learn, but the biggest thing for him to keep in mind is that he isn't any different from anyone else and he shouldn't let Diabetes prevent him from doing the things he want to do. It just takes takes some creative thinking sometimes to find ways to make things possible. :)
I suggest some psychological counseling. I am not saying there is anything wrong with your son. But as a 17 year old when i was diagnosed, i needed and now wish my parents had helped me understand how to deal with this now lifelong disease. This is a ton for a kid, or anyone, and some assistance (in my humble opinion) should be offered to all new diabetics. Your son might be a good candidate for such intensive therapy.
Now with the symptoms described. In my opinion this is sort of a common issues for diabetics on insulin. It may also indicate that he may not be following his diet, insulin regiment or both.
My 13 year old is generally "tired" when we ask her to clean her room, practice piano, etc. When a mall is on the horizon, OTOH, she is *extremely* energetic.
He might do better for his basal using something like either Lantus or Levemir. NPH can be a really rough insulin to work with I think as it peaks at strange times.
It also doesn't always peak at the same time. One day it might be "early" peaking before lunch, leading to one set of challenges, and the next day the same dose will peak later, leading to an entirely different set of challenges. I agree with christy that the other kinds may work better.
hahaha my 16 year old son is the "laziest" most lethargic kid you can come across...unless like you said AR there is something they really enjoy on the horizon. Hmmm for mine the newest release of the hottest video game.
While I understand your concerns, this is such a tricky time and its hard to know how much of this is from just being a "teenager" to dealing with this life changing disease. I would look into possibly as I stated above something either like lantus or levemir for his basal needs..NPH is just an ODD insulin, I never could get good control on it. Also as others have suggested maybe he just needs someone to talk to a counselor type person who specializes in chronic health issues. I think sometimes its much easier to talk to someone else than it is a family member, I think sometimes when someone is too close, it can make it hard to really open up and let it all out EVERYTHING you are feeling, how ANGRY you are feeling etc. Maybe a neutral person would be of great benefit. I would encourage him to join on here as well if he hasn't already, even close to 27/28 years of dealing with this, I have enjoyed this so much more, than anything else. Im sorry Im not into big "support" group style things, I'd much rather chill from my home. But to be able to talk with people who truly get the daily struggles, fustrations...truly understand what that is like and can offer support, encouragement etc. For those who truly understand what our triumphs and victories mean...such as an improving A1c...for those who dont live with this...whats the difference between an A1c of 12 and one of 5...its just numbers to them.
Also just the growth and hormonal factors are unfortunately even under the best of circumstances make the next few years challenging, with the need of lots of changes and adjustments. I do think if your son is interested, a pump is the way to go as it offers so much more flexibility, but as others have stated you really DO have to be on top of it. And I think it needs to be something your son really wants as well. It took me until this year to decide on a pump, lol. My suggestion is to just hang in there, its going to be a bumpy ride, encourage your son to talk or to join this site, perhaps seeing if he wouldnt benefit more from a different basal type insulin, and just know its going to be a ongoing process. Encourage him with good control this does NOT have to effect his life, with carful monitoring and adjusting of his medications, he can do pretty much anything he wants.
You've gotten some great responses, but one thing I want to add is that if you could find a community of Type 1 teenagers for him to relate to, whether at a camp, a support group, activity group, whatever, it would really help normalize his situation for him. No matter how much good support he might have such as friends, family and even professional counseling, there is nothing like a community of peers. JDRF is one good referral source for age specific activities. Also if you join the Canadian group they might have other resources.
Agree, he needs to meet "a community of Type 1 teenagers", expecially to see and listen how their lives are "normal" anyway. I don't think it's a problem with his BGs.
You can change NPH with lantus or levemir (I suggest you to do so), but the main problem now is to let him know that even if everything will be more difficult, he can still dream his future life and achieve it.
None can say the right words much as can people with his same condition and age.
About using a pump, try to understand if it's the right timing now. He has to be involved in this choice, and it could be too soon.
Lantus or Levemir I always found to be far more stable in my system than NPH ever was. When I was first diagnosed I was on NPH, and within a month I had asked my doctor for a prescription to Lantus because I was unable to even remotely keep myself stable and felt horrible from all the ups and downs.
Once over to Lantus though, I found things normalized and was able to bring my A1C down to somewhat more respectible, and then allowed me to move over to the pump. :)
I agree with being able to talk/communicate with neutral people that are also in the same condition as him. Sometimes people need to vent, and doing that with people that are close to you can be awkward. I'm no expert mind you, but I always found being able to talk with someone that was going through something similar to me helped put a new perspective to things. If it helps, I'd be happy to try to answer any questions he may have from the views of a third party. Still being relatively new to this all I can relate to the changes and impacts it has on one's life.
As far as the decision to go towards a pump goes, its definitely not something to be taken lightly. It is more work, but has great benefits. It requires a sense of responsibility and understanding, and tends to cost a fair bit more - especially without insurance coverage.
Getting the basics down to MDI is a must because if you ever experience a pump failure you still need something to fall back on, and if you're unsure of how to do it or make the appropriate calculations, you'll need to go to the hospital until the pump problems are resolved. Although the pump companies are getting much quicker at replacements when they are required - just the other day I had a catastrophic pump failure and I had a replacement in a little under 2 hours to my door. I was thoroughly impressed with Animas' response time.
this may be off course but have you had him tested for celiac disease, sometimes they can go together. i agree with everyone else that it is a big adjustment and he is just taking it all in and coping the best he can. my son was 10 when he was diag. he is now 13 and rolls with it pretty well but still has bad days sometimes, he also hasn't really started in with puberty either so i am fortunate for that in a way. all i can say is making him feel totally supported, cared for and educated without being over the top with information overload will help him feel less overwhelmed. he is part of the team but you will be the director for some time now. let him be a kid while you handle most of his diabetes for him until he is ready to participate more. this approach has helped us, obviously always making sure he is safe and understanding what he needs to be safe is important. try focusing on all the other nondiabetes things that are going on with him. i know how the diabetes talk can sometimes take up alot of conversation time but make time for lots of other conversations too. i'm not trying to be to preachy just saying what has worked for us. joining tudiabetes has been a huge help for me as a parent because unless you are touched by diabetes it is hard to understand. good luck and feel free to reach out to me as our boys are close in age. wishing you both more peace and ease through this tough time. amy
I agree with Jacob's mom -- testing for celiac is a good idea. Celiac is an insidious problem, causing many other problems besides a belly ache, and is an autoimmune disease closely related to Type 1.
From what I understand our area always starts off with nph and nr, we will be in to the diabetes clinic at the end of February. I'll ask them about switching up the nph for something else. They also like kids to be able to control things with injections for a year before moving to a pump, so we'll see where that goes.
Up until the last month, nph was working pretty well, but there seem to be a few more problems now that he's moving out of the honeymoon stage.
He's pretty good about following his diet and insulin regiment. I can certainly see the benefit of offering some emotional support/counselling. Our program has the option of that and I'll look into it for our next clinic appointment next month.Thanks for your input!
