We are 3 years in with T1 diagnosis. Our teen son feels like crap 70% of the time. He’s missing one day of school a week, on average. It’s not BS — he does feel awful. Dizziness. Stomach issues. We are managing pretty well with A1C under 7. Anyone have a similar experience? The pump made no difference in how he felt and was very complicated. We went back to pens. We are all burnt.
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Hi @RoosterInTheCity . I just replied to your other post and see this one too. Congratulations on keeping his A1c under 7. I’m wondering if his numbers are generally in a good range, or does he have highs that are offset by lows? If that’s the case it’s something to look into.
While pumps are generally considered the best way to treat diabetes, some people do just as well or even better on shots; so if that’s the case for your son just keep going with what works.
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Hey Kelly,
I know diabetes can be overwhelming, but dont forget that having diabetes doesn’t mean other stuff won’t smack your son just because he is diabetic. If his sugars are pretty regular amd his diet hasn’t changed much consoder looking outside dia etes for an answer. These days it seems young people are exhibiting more intolerance to gluten and dairy; but it sounds like POTS is a possibility as well. Didn’t mean to type so much but did want to get you thinking outside the box. Good luck to you both.
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@RoosterInTheCity , your post sets off alarms in my mind.
[1]You did not share your son’s age. There are pieces linked to his age.
[2] Does your son have the protection of a §504 Plan? If you are in the USA, a §504 plan will provide attendance protection related to the diabetes. Not having a §504 can open you and your son to the problems of truancy in juvenile court for him & adult courts both parents.
[3] Your comment about pumping opens the door to training & pump settings. A poor, sloppy trainer and an endo failing to fine tune settings is deplorable. There are groups where near real time support is available, able to teach you what to discuss with your endo to optimize your son’s pump experience.
[4] Dizziness and stomach issues are symptoms of ketone intoxication. There are 2 types of ketosis. First is euglycemic ketosis where glucose levels are normal & ketones are present in the blood & urine. Here the toxic symptoms are often overlooked because the glucose is within normal limits.
Second is the DKA, diabetic ketoacidosis. This is a LIFE THREATENING condition and is frequently severe enough to lodge a person in an ICU bed.
The idea for sharing this is to get you in a positive tactical position with your son’s physical condition, his academics, and the potential truancy issues.
Stay safe.
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@wadawabbit , see post above. Thanks.
J
I just read it - thank you.
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This was helpful. Thank you. It’s nice hearing people do well or better on pens. Our experience with Tandem pump sucked. And it wasn’t lack of trying or training. The tube was intrusive, many parts, redos, complex system. It reduced lows & highs, but the constant misery it caused our son was not worth it, we decided. Trying the new Omnipod 5. It now talks to Dexcom, and it’s all in one delivery system. No tubes, etc. We’ll see…
I switched to the Omnipod5 recently myself - am posting my experiences on the forum. Maybe your son can do the same so people can see what it’s like “in the wild.”
You know your son is diabetic. You know that dizziness and stomach issues can be symptoms of out of control diabetes. But the diabetes is in good control. I’m sure you’ve talked to your endo about this.
So… Maybe it’s not diabetes. T1D is an autoimmune condition. What you’re describing could be the symptoms of a different autoimmune condition. I’m diabetic, but I’ve also got autoimmune hypothyroidism, fibromyalgia, and more. In fact, my fibro kicked in and had me sick in bed more often than not back when I was in my mid-teens, about 3 years after the T1D was diagnosed.
Thing is, dizziness and stomach issues are very general symptoms. Could be a digestive disorder like crohn’s. Keep a log of what foods he eats each day and see if you notice a pattern of when he gets sick. But it could be any number of other things.
My advice is… Don’t assume it’s the diabetes. Have him checked by your GP and maybe some specialists. Could be gastro, or neuro, or rheum, or immune, or… IDK. I’m not a medical professional and even if I was I wouldn’t be able to diagnose it from a vague symptom description and no exam. Ask your doctor. I hope you get good answers.
Hi @RoosterInTheCity . Just checking in - have you made any progress in finding out what’s going on?
All in One is not true. It is two parts, the pod and the CGM. Look carefully.
Second, I am active in another part of the D social media world. Your comments lead me to believe as a nearly 25 year pumper, you were given mediocre training.
Message me and I will be glad to provide deep dive training tips & tricks, message with your son to explore what is thinking, and give you the mental tools to aim toward deep and meaningful success.
Hi Kelly,
I don’t know if this will be much help, but my name is Katie, and I’ve been going through incredibly similar things. I have type 1 and have been feeling awful for a long time now. I dropped out of high school and am trying to get by online. If you would like to talk further about how to get by and hopefully get better, I’d love to have somebody to talk to.
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Hi Pudgesifter,
What you are going through sounds awful, kiddo. My son has missed 3 months of high school — I’m sure you have the same anxiety about missing school and are tired of being sick and tired. We pushed his doctors hard for referrals and finally saw a rheumatologist. He was just diagnosed with Rheumatoid Arthritis, and he potentially has IBD as well. We’ll be trying out different drugs over the next few months to find something that works. Nobody told us Type 1 often attracts other autoimmune diseases — it’s very common, and very common to have more than one. Talk to your parents. They need to push the doctors along to get you in front of a specialist. Your symptoms are not in your head — they are real, and I believe you. Keep me posted. —Rooster. (P.S. - There are a lot of well-meaning but unhelpful people in these forums. Ignore them. )
Hi kelly, So sorry your hoing through this. Things will get bettet. Their are good days and bad things with everything. My Son is 9 and only diagnosed for a year. We have a dexcom and tandem pump. My son does very little carbs.he has a cheat day once a week. His A1C has been 6 the last 2 times. I’m a nurse and this was still completely out of my wheel house. We decided to Home school our Son just recently. He kept getting colds and always tired, He has had bloodwork checked. His throid checked and iron levels. Everything is good. So I just want to say i don’t think anything else is wrong with your Son…We think our Son is Anxious and depressed. I find that everyone I talk to is up beat and can’t understand what their going through. Going to school not being able to eat a normal lunch bc your going to be high. Or missing gym. Or party food. Its all a lot. Just wanting to be like normal kids. The biggest thing remembering what it was like before. Our Son was Nauseous everyday before he got on the bus. He would turn white and say he felt like he was going to pass out. His blood sugars are always good before school. Its anxiety and stess. We just pulled him bc he got Covid. He was making up so much work from being sick. To me its better to just homeschool for awhile. Give him a break. He still does soccer, church, and 4 h. We’re starting therapy Soon. Good luck.
Hi @missynikcjGabe , and other parents out there. I just wanted to suggest you look into camps for kids with Type1 - some take “kids” up to age 18.
I don’t know how or if COVID has affected camping but it’s not too early to start doing research - you might find some links under the Resources tab. I went a few summers when I was what is now called a tween and it was great fun, my parents were grateful to be able to relax a bit knowing I was in the hands of counselors and staff all familiar with diabetes. At the time all of us were on injections, and the most high tech thing around was a tabletop machine that checked your blood sugar. We were all curious and fascinated but it was not for use at home and only the medical staff were allowed to touch it. A precursor to home BG tests - how far we have come! I imagine kids who go to camp now spend their time comparing their various tech and enjoying making friends with other kids just like them.
Check it out if you’re interested!
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@RoosterInTheCity Presumably, you’ve had him checked for other illnesses by a doctor, but if not, please do so. I’m not sure of your son’s age, but if he doesn’t have the extreme highs/lows referred to by @wadawabbit (any of us would feel terrible if we had them) the symptoms you describe could be several other things, e.g. mononucleosis. Most T1s/parents of T1s would first look at their T1 or its treatments as a potential cause, but we’re just as open to other issues, if not more so, though the T1 status may contribute to it.