Any ideas for managing challenging behaviour?

My son is 3.5 years old and was diagnosed at 17 months old, he is on pump therapy and his HBA1c is usually between 58-62. I know this is a high reading compared to adults with type one but the Drs are not worried about this - although I am always trying to lower it. It seems to be a never ending battle between correcting high BG’s and treating hypos, there is not really a day where his BG stays between 4-7.

Over the past 6 -12 months his behavior is becoming increasingly challenging - he is so very hyper at times and can’t seem to have fun then calm down, he just gets too hyper and that quickly turns to rage and violent outbursts. He also finds it very difficult to regulate emotions and express himself - he is very intelligent and has great vocabulary but when it comes to talking about his feelings/emotions he can’t manage - instead crys/winges at me or gets very violent towards me.

I am a single parent and have been managing with the help of my parents - who his behavior is no where near as challenging for. This makes me think that he does know how to behave and can behave himself for his grandparents why can’t he at home. I have tried various strategies, meditating, calming music, outdoor play, as well as time outs and reward charts.

He definitely responds better to positive reinforcement - shout at him and get cross and he just shuts down. I do try and remain positive and reinforce the good behavior but at the minute he just is not improving and I am running out of options ! I can’t stay at home all the time ( I NEED ADULT CONVERSATION AND HE NEEDS TO LEARN HOW TO BEHAVE IN SOCIAL SITUATIONS) but this is what i have been doing more and more often recently as it is so embarrasing for me and can;t be nice for him to be removed all the time - especially when the behaviours are not necearily his own doing !

I have never posted on any sites like this as I try to remain as positive as possible but this has got me beaten !! ANY SUGGESTIONS WELCOME ???!!

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I had to look up the conversion, but I think the 57-62 A1C corresponds to 7.5-7.8 in US terms.

I was diagnosed at age 5 over 50 years ago, when things were much different. You have a very challenging situation and this is a great site to find help and support.

I think @Lorraine and @Mila might be able to help.

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Hi and welcome. This is a good place to talk about this. I’ll talk a certain way based on how I think okay. So first don’t forget your son is 3.5 yo. So terrible 2’s and well I forget what they call 3’s. He’s going through growth and development changes. He most likely won’t remember much about how he’s acting. Maybe a few things, but not everything. As long as he knows that he can count on you and that you take care of him, then that’s what he’ll remember. And you’re doing it or trying to. Nobody said it was easy! Yeah US hba1c of 7 or so is close to 150-170 or so avg. not terrible, so it’s not that bad. He must take your lead, he must understand why you’re doing what you’re doing for him. He needs to eat or else it’s not good for him. It can be tough because little kids like chocolate milk and lollipops and all that stuff. The going up and down like you said with the blood sugars is not good for the kidneys, so you should be aware of that . I don’t know how much his body is still producing insulin, but a sugar of 170 will usually go back down to 120 or 100 eventually. Diabetes is related to hormones. So sometimes a higher sugar level can lead to crankiness, moodiness, irritability etc. He needs to understand what your doing is for his own good, meaning he wants to be okay right. So you’re there to help him. And then he will understand it for himself. Patterns at that age will form, and he’ll get very used to it I would think. You shouldn’t have to worry to lower it if it’s 150 or 170. That will cause him to go too low, and the low blood sugars are the real scary reactions. Insulin forces the body to get hungry, and then if you don’t eat because you think your lowering it, well that’s not how the body really works. It takes time. There’s plenty of sugar free stuff these days, everybody’s eating healthy and natural too so you can manage preventing the highs better with that. Don’t forget, sugar levels sometimes cause us to act a certain way. Perhaps he’s confused because he doesn’t really understand it. Don’t forget he’s very young. I mean I’m not saying it all I know, but I would be sure to act like everything’s okay and explain everything to him you know in kid terms of course. He’ll get used to it. Wish you the best. My daughter who is almost 16 just recently was diagnosed, it’s confusing. There will always be questions. In terms of school, papers need to be filled out, nurses should have his medicine on hand, and he should be able to check himself anytime that is necessary. This is nothing to be embarrassed about. It is something to be taken care of ok. I am also a single parent.

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When my daughters were that age they used to love cartoons and going to the playgrounds and the museums and reading books and stuff…

Sugar levels should be checked when he’s acting uncontrollably. People that know me always say when I’m acting funny to check my sugar level or eat something. Sometimes I’m not thinking of it you know. But they’re right.

Hey, thanks for the response!

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Not to belittle your circumstances or tease the guys too much, but doesn’t his behavior just sound like a man? I’m not a parent, so maybe the post will get better responses from the ‘parents’ section of the forum, but I had a little brother and he was a nightmare until around age 11…when I (the girl) became a nightmare. I firmly believe that my brother didn’t develop empathy until much later than I. He’s a perfectly well adjusted adult, but I believe my mother had a terrible time. My only idea is that if he’s bright AND a boy, he might be bored. But, I don’t know if 3.5 year olds get bored. You could try making sure hes too exhausted to behave badly, like the 3.5 year old equivalent of joining the ski team or cross country running team - whatever that is. My dog behaves much better if walk him a mile a day. I image the world can be an uncomfortable place for small, high energy creatures that just want to run while the rest of us just want to sit quietly. Best wishes.

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I’m not a parent, so I don’t have a lot of business chiming in on a parenting thread, but I felt compelled to because what you described is exactly how I behave when I’m riding the sugar coaster. Okay, fine, maybe not to the same extremes, but pretty darned close.

If you’re not actually diabetic (and I’m assuming you’re not), the list of symptoms you’ll read about don’t adequately paint the picture of what we go through.

For low sugar, you’ll see things like “racing heart”, “sweating”, “anxiety”, “tremors”, etc… The reality is that it’s somewhere between compartment syndrome, what I imagine a really bad acid trip feels like, and a panic attack. The best way I can describe it is that you just can’t connect the dots and the world is drowning you. My head seems to function perfectly fine, thoughts may actually race faster than usual… But I just can’t get what’s in my head out of it. I can know that I need sugar, but I can’t make my muscles cooperate to get there. I can think full sentences, but I just can’t get them to my tongue. My body feels heavy, disjointed, distant, and burdensome. It’s frustrating… INFURIATING. The emotional pressure cooker is raging, and the pressure is building. I feel so awful and it pisses me off and makes me want to cry, and the pressure builds… People don’t understand what’s wrong with me. They stare and want to fix it, but I can’t explain. I just feel their eyes burning into me, and it pisses me off and makes me want to cry, and the pressure builds… And by “people”, it could just be my loving husband who DOES know and can usually tell I’m going hypo before I do, and I know he’s trying to help but his eyes still feel like they’re burning my soul, and I can’t express that I love how he cares for me but that I don’t want him to see me broken, and instead of voicing the “thank you, but I feel vulnerable” I get more frustrated, and angry, and sad, and the pressure builds… I just don’t want to be broken. I’m about to lose my s*&t. But I’ve got got to hold it together, and I’m panicing because I don’t think I can, and it pisses me off and makes me want to cry, and the pressure builds… 15 minutes. It takes 15 minutes for the sugar to work. But 15 minutes is a f’ing ETERNITY when each racing heartbeat is choking me to death, and I have no energy to spare but I’m wasting it anyway trying hold in the vibrations before they tear my whole world apart, and it pisses me off and makes me want to cry, and the pressure builds…

The medical professionals simply call that “anxiety”.

On a good day, I can turn inward, try to block out the outside world, and self-soothe until the boiling pot slows to a simmer. I’ll actually pet my face, neck, chest, and/or arms with the back of my hand. On a bad day, the pressure cooker blows it’s lid off, and it’s not a pretty thing.

The rule in our house is that I’m not allowed to fight him when he tries to help, and he’s not allowed to get mad at me for anything I say/do when I’m hypo. And trust me, it’s not easy.

And I can honestly say that as a full grown woman with 35 years more years of life experience than your son on which to draw, and 35 more years practice articulating… I KNOW you’ll only be able to empathize with a minute fraction of the physical and emotional distress I go through when hypo. If it’s so difficult for me, how can you possibly expect your 3 year old son to tell you how he’s feeling. It goes worlds beyond his limited understood emotions: happy, sad, or mad.

For high sugar symptoms, they’ll tell you “frequent urination” and “increased thirst”. What they don’t tell you is that it’s actually slowly killing us cell by cell. That the ketones produced can actually replace the bicarbonate in our cells (the pH buffer) and wreak havoc on every system. That we can’t use energy because it’s stuck in the blood instead of the cells. That since our bodies have to find another means, that painful acids build up in our muscles. We feel sluggish and tired and everything ACHES. And the thirst is actually emotionally devestating. Feels like your saliva is made of wallpaper paste, and like you’ve got paper cuts on your lips. Nothing can slick that sort of thirst. Unfortunately, high BG brings nausea, which means the only thing that can dampen your mouth’s misery, will increase your stomach’s misery.

Your three year old can’t understand all that, though. All he knows is that he feels sick. I bet you get crabby, too, when you’ve got the flu.

And guess what, the numbers don’t tell the full story, either. Even when they look in-range, he could still be feeling symptoms of highs or lows. It’s all relative to the crazy glucose roller coaster. I’ve had days where I felt sky high, but turns out I wasn’t close. I’ve had days where I felt terriby hypo in the 200’s because I was coming down from a 400, and I’ve had a lot of days where I just flat out didn’t know I was high or low. It just doesn’t all fit into the perfect box.

Now take alllllll that, and put the “he’s at an age that drives EVERY mother of EVERY child crazy” cherry on top of the sundae.

I sympathize for you, though. I know it has to be hard. And I feel like you must be one hell of a mother to be so engaged and looking for answers. It may not always feel like it, but I promise you’re doing the right thing. Have you found any other T1 parents in your area? Sounds like you need a support group… and a babysitter that’s fully in the D know. Those would be really good friends to have right now so you can escape and socialize for your sanity, without adding more stress to your little man. Maybe you both just need a good scream when he’s acting that way. Do it! Maybe he needs other creative ways to express what he’s feeling if he can’t find the words, like drawing pictures, or acting things out with sock puppets. Maybe he needs something he’s allowed to pummel when his little pressure cooker is boiling over, like a bean bag chair, but teach him that is the only acceptable place to blow off his steam. I think I remember my nephew having a little tykes punching bag contraption.

I wish you lots of good patience, because you need that a lot more right now than luck!

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For a non-parent that sounds pretty good !!!

There is no single answer and there is a not a big red line between RIGHT and WRONG.

My first thought also was to “exhaust him”. Unfortunately, between a battle of exhaustion of the child and parent, the child usually wins. lol. They recharge faster and seem to have an almost limitless supply of energy as compared to the parent. Having two parent who are very much cooperating does allow “tag team” but that simply is not always the reality.

Relatives who live nearby or trusted friends can be very helpful.

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Hi!

I have three children. One of them, Caleb, is currently 15 and was diagnosed with type 1 when he was 3.

Have you been able to associate behavior to blood sugar? We have included in Caleb’s 504 plan for school, that his blood sugar should be checked before determining if disciplinary action should be taken. This language is common bc cognitive ability and behavior are affected by out of range blood sugars. Caleb has not had any disciplinary issues at school, nevertheless we include this for his protection. My point being if you are able to associate behavior to bg, I would handle that situation differently than if your son is acting out within acceptable bg ranges.

If it’s not related to bg then is it related to diabetes in general - just being ticked at the world for the unfairness of it? There were times when Caleb’s difference became more apparent to him - kids commenting when he checked his bg, for example. Is your son feeling any limitations that bring awareness to the burden that diabetes is?

Since you mention his behavior is different with your parents, this could be completely unrelated to diabetes with lots of different approaches (many of which it sounds like you’ve tried).

I remember Caleb going through an “angry” period when he was younger. I got topical children’s books to read with him. He seemed to be keen to the fact that I was thereby labeling him as “angry.” lol I don’t remember any one thing I did that helped. But over time these behaviors went away. My approach was to define rules and responsibilities and to be consistent in their enforcement. With this I also made an effort to listen to Caleb. This was hard because he didn’t naturally want to talk about his feelings. I could not force the conversation and if he indicated any sign of opening up, I had to be careful not to jump on it or he would shut down. Neither Caleb nor I are patient people, but being patient with him was perhaps the most helpful thing I could do.

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Hello @KC17 and welcome :slight_smile:

There are so many reason why a 3.5 year-old could be acting up. His age is a big one. Still, there are so many other causes you could consider, especially if your instincts are telling you this isn’t right. Trust them. I’m sending a call out to @Jen who has food allergies; something you might want to consider. I found this article doing a google search:

https://www.foodallergy.org/about-fare/blog/with-serious-food-allergies-when-should-a-parent-consider-child-counseling

I wish you and your son all the best!

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I’m not a doctor, so obviously you would want to consult with a doctor if this is something you think may be an issue. However, I have never heard of food allergies causing behavioural issues as a main symptom. True food allergies are caused by IgE antibodies to food proteins that bind with cells that release histamine and other chemicals when exposed to the food allergen. These chemicals that are released during an allergic reaction cause symptoms like hives, swelling, flushing, breathing difficulties, rapid heart rate, stomach upset, low blood pressure, and so on, usually pretty soon after eating. I think any articles discussing food allergies and behaviour are discussing behaviour in terms of coping and daily management (it can get stressful and anxiety-provoking when every meal could potentially kill you).

I have heard some people say that food intolerances can cause behavioural problems, though I have no experience with food intolerances. There is no way of testing for intolerances other than keeping a food diary and looking for correlations between foods and behaviour. That is definitely not a road I would start down without consulting with a doctor first.

For what it’s worth, I’ve had Type 1 since I was a kid (though not as young) and the blood sugar roller coaster would often (and still does) make me super irritable and frustrated. I would definitely check blood sugar during these behavioural issues to see if that might be the cause. And if it’s really interfering with everyday life, it might be worth bringing it up with his doctor. That way any medical cuase could be ruled out, and the doctor probably would have suggestions and recommendations for community resources.

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Thanks @Jen for your input!

Man I wish I had a 504 plan when I was in school. Whenever I was intractable or uncooperative as a kid it was because of out of range BG’s but my teachers rarely made allowances for mood swings.

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Consider getting him tested for celiac disease which is commonly linked with TD1 (your Ped Endo should have done this already, but many do not). Celiac disease can impact behavior and is linked to autism, ADHD, anxiety, depression, etc. It just takes a simple blood test to start the diagnostic process.

Learn more about this connection:

https://celiac.org/about-celiac-disease/related-conditions/diabetes-and-celiac-disease/

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