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Insulin and extreme side effects?

BluePea

Newbie
Messages
3
Location
Glasgow
Type of diabetes
Type 1
Treatment type
I do not have diabetes
My 3 year son was diagnosed with type 1 diabetes over a year ago.
It's been really difficult to adjust to but I feel we as a family were gaining some ground and got into a pretty good routine.

However Over the last few months things have really escalated badly.
in my opinion I think it's the insulin that's doing this but I'm no expert in this.
Perhaps there's someone out there who's more informed and could shine some light to this.

My Son is currently on 3 shots of novarapid and 1 shot of levimir daily.

my son could be well behaved for hours then all of a sudden he can just dramatically change.
For example I felt like this morning and afternoon he was okay but as the day goes on then things gradually get much worse.
He can become super hyper active and sometimes shows extreme anger towards anyone including myself and my partner.
it's almost like something triggers in him, he'll not listen to any command to stop doing something and just laughs and continues doing it.
Yeah this just sounds like an ordinary 3 year old but in this case it's much more extreme.
Tonight he was continuously head-butting the side board of my bed and laughing even though it was actually hurting him.
It really freaked me out, it was like watching a scene from one of those films when someone is possessed.
This is just one of the many examples we're currently experiencing.
Some nights he wakes up an physically attacks me and tells me that he hates me, then just moments later it's almost as if something clicks in his head and he tells me he's sorry and he loves me.
One day when he was in hypo, He actually started attacking my arm with a look of sheer terror in his face whilst screaming "to get them off" and "spiders".
After bringing him out of his hypo, cuddling into him and calming him down he was certain there was spiders on my arm.
I honestly feel he was hallucinating and I'm wondering if the insulin he is on is having these effects on him.
There was another time when I was driving the car he was in a really hyper active mood he kept saying we're going to "crash"
This put the fear me as you can imagine.
There was another time when he said his "fruitshoot" was floating in mid air when we were lying in bed.

There's times My son can go into a fit of rage and he doesn't even know he's doing it and when he snaps out of it he says he's sorry.

Most of the time when these things happen his blood sugar readings fine, I feel it is all down to the type of insulin my son is taking.

I've spoken to the diabetic nurse that we routinely see and I feel they're hiding the truth from me, they're trying to put this down to behaviour problems but I'm not accepting that.
My partner has a young nephew who has severe behaviour problems who's been diagnosed with ADHD but this is much different.
The diabetic nurse then suggests that perhaps it's my sons diet, which again is completely inaccurate.
Since my son has been diagnosed he actually eats really healthily and would prefer an apple over a chocolate bar.
So that rules that one out.
I just feel like I'm getting nowhere and the buck is being passed all the time

Has anyone experienced these or know someone who has?
Could the type of insulin my son is currently on be having these extreme side effects?

It absolutely breaks my heart seeing my Wee boy like this,
Any information or advice would be much appreciated.
 
The insulin itself would not do this. Poor bloodsugar control, particularly hypos, could.

What are his bloodsugar values when he's having these fits? Do you carb count his food and inject his insulin based on an insulin:carb ratio? How often do you test his blood sugar?
 
Hi, BluePea, Firstly, your son should not be having any type of hypos at all - it is totally unacceptable - your nurse needs to help with this, urgently , within days - to advise re insulin and food adjustment, hypos are bad for the brain, especially in such a young child.
It may be that your son's insulin needs are changing, or even changing downwards, as your son was only diagnosed a year ago. The brain effects of a bad hypo can go on for a while after the blood glucose has recovered, so what you describe re the spiders would not be unusual..
Secondly, up and down blood glucoses make anyone feel very unwell, even without any hypos.
As DaftThoughts says, how often do you test?
These unwell feelings and hypos such as you describe must be terrible and very frightening for a young child, and could end up causing all sorts of issues. And fear of hypos can get embedded if one has too many - this happened to me years ago, before there was access to more testing
If things do not resolve, with the help and support of your son's clinic, you need to ask for a continuous monitor asap. Maybe your son needs a pump? If nothing works, you could try other insulins, there are a number available.
 
Hi BluePea, my 8 year old son was diagnosed four weeks ago. He is also on three novorapid and one levemir. We are experiencing the anger and rage and then a sorry after it passes. I get the I hate you occasionally too which breaks your heart. I feel like I am dealing with a stranger sometimes too but I think it's the fluctuating sugar levels and not the insulin it's self.

I have reduced the number of carbs and injections throughout the day and found that as the sugar levels aren't rising behaviour is changing too and he is much more happier and energetic.

Good luck
 
All the basic things you are describing do sound like normal behaviour challenges in a 3year old. But you are experiencing a more extreme version?

Behaviour changes aren't a side effect of insulin. But they can be a symptom of blood sugar fluctuations.

Hallucinations due to a hypo isn't that unusual. And if you're a 3 year old that hallucination might take hold and continue while euglycaemic. It's not insulin causing the hallucination, it's low blood sugar, your brain needs glucose to function. Having that kind of severe hypo is very disorientating and distressing even when you are old enough to understand exactly what happened.

A 3 year old with a big change of diabetic diagnosis and the physical stress of fluctuating blood sugar may well develop some extreme behaviour in reaction.

But he might always have been a challenging little boy without diabetes, perhaps he's just pushing boundaries because that's what three year olds do, perhaps he's ready for school early and needs lots of different stimulation.
 
BluePea said:
Could the type of insulin my son is currently on be having these extreme side effects?
Click to expand...

No one could possibly say with any certainty @BluePea

The boy hallucinating when he was hypo can happen as the brain is starved of glucose so it can cause all sorts of reactions, but children can go through periods of rowdy behaviour and push their parents to the limit, the saying ''terrible two's/threes'' comes to mind here.
 
@BluePea I was going to suggest blood sugar issues, but you've said his blood sugar is normal. However, if it's erratic that might be contributing and making him feel emotional - both tearful and angry.

Have you considered a pump? They allow the tiny doses and tiny adjustments children need, and can give smoother sugars.

I personally think his behaviour may also be because of the stress of his diagnosis. He's too young to clearly express his confusion, anger and upset, and so some of his behaviour may be to do with that. His DSN might have suggestions about helping him deal with the emotions associated with Type 1.
 
How is his blood sugar tested? Is it a continuous glucose monitor of it is tibet prick tests.

I have had a continuous monitor on for 2 weeks as I'm struggling with my bloods overnight. But I have noticed that sometimes it reads fine, but I feel hypo symptoms. When I have checked with a finger prick my levels have been low.

I'm using the freestyle libre.

There was something in the paper about this too, about an alert dog that continuously pestered the parent, but the boy's blood sugar read fine on the monitor but when she pricked his finger he was dangerously low.

It does sound like amplified 3 year old behaviour, but some of it does seem strange. As well if he is used to higher sugars, anything below his normal range may make him feel hypo.


Just a couple of suggestions, but I doubt it's the insulin.

Best of luck x x
 

I wrote this post in another forum and generally this is quite a common reply.
Poor BG levels can be the cause of some unusual behaviour.
I understand this, but in many instances my sons BG readings are within the recommended amount.
yesterday for example when his behaviour really flaired up his BG levels were consistent between 6 and 7, earlier during the day he was slightly above 10 and he was actually fine.
I'm really over protective with my son and I check his BG levels really frequently and try my best to adjust and work between a carb/insulin that has been taught to me.
Basically I feel that my son doesn't have to be hypo or hyper before his behaviour can reach the extremes I've mentioned in my opening post.
 

I recommend seeing your DSN or GP about the behavior (once more) then. Perhaps get a second opinion. As insulin doesn't cause behavioral issues by itself (non-diabetic children have as much insulin as he does, and the only thing insulin can cause is irregular bloodsugars but his values appear fine), changing the insulin type won't help and there might be more at play. Like azure said, stress from the diagnosis and treatment could be the reason, but what if he has other issues, like pain or discomfort from a source other than diabetes, that makes him act up? When he's unable to express in the right words what's wrong, he resorts to the the things he does know how to communicate, which are causing harm in the form of more stress for everyone.

If it's his lack of coping mechanism, your GP could refer you to a child therapist who can teach you and your son how to cope with the stress and express himself in a manner that is acceptable. (Therapists are extremely helpful, seeing one doesn't mean you're crazy or you're broken or anything like that. They just provide tools to live better!)

Also keep in mind that because someone you know has a child with ADHD with symptoms that don't match your son's, that doesn't mean it can't be ADHD. A lot of conditions can express differently per individual (diabetes is one such example) and only a professional can draw the conclusion. It's very important for your son's well being to explore all options. If you focus too much on the insulin being the bad guy here, you'll only make it more difficult for him to figure out what's really wrong, and prolong the issue unnecessarily.

I firmly believe that you can get this sorted, but the first step is to look beyond the insulin. That's very important. You and your son deserve the best after all!
 
Bear in mind that fixed doses of NovoRapid requires fairly fixed amount of carbs at each meal. If they vary a lot then slight changes to the Bolus dose based on the mealtime carbs may help a bit but seek the DN's guidance. I know the very young may not carb-count but bear in mind the need for stable carb content in the meals if you don't.
 
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@BluePea I'm sorry to hear what you're going through.

Aside from the diabetes is he well? I'm not saying this is what it is, but my own experiences of hallucinations and violent mood swings (albeit as an adult) were related to an extreme thyroid problem.

Whatever the cause (and I agree that it may be down to having an awful lot to cope with - and he's so young, bless him) I would probably be wanting to seek reassurance and support, and perhaps further investigations, from your GP and DSN.

 
Hi bluepea wouldn't of thought it was the insulin he's taken like the other members say it would be more the hypos even an adult can become angry and snappy while having a hypo is it perhaps the injections he rebelling against there's other options for giving children insulin instead of needles like they say just see doctor etc and explain what's going on hopefully there's someone out there who can help for his sake and for yours please keep us posted
 

Hi again, the point re hypos, any hypo, is that they dull the response to the next hypo for at least 12 hours, probably more - If your son has got to the stage of having the sort of hypo you describe re the spiders, then his control is not good - his response has been dulled by quite a lot of hypos that may have gone unnoticed. If a person has very few hypos at all, including no unnoticed dipping at night (this can be a problem for children especially) the ordinary hypo response of feeling a little sweaty, some tingling of the lips, feeling a bit hungry and weak, etc etc will be there - not the brain symptoms, as they should only occur at a certain level of blood glucose, somewhere about 3.2 or 3.3 mmol/l, if i recall correctly. And your son should not be going lower than 4.0. If he is dipping at night, he will have adapted to lower blood glucoses, which could explain the type of hypo you describe - if the dipping is happening, he will not be sleeping properly, his brain cannot fully rest and repair, this may contribute to moods/feeling unwell. I had type one when many had no blood test strips at all - i thought i was lucky to have max 4 strips, but even then, there were none to test for hypos, i was dipping at night and got into a pattern, i did not know this, at that time there was no way to know, the doctors were not aware of hypo dangers in the same way as they are now, considering my control 'very good'. In my case i found an insulin that suited me better, Hypurin pork, and learnt to raise my blood glucoses more to try to get symptoms back. Now there are many more choices - other insulins, the pump, and monitors to help - i do think the clinic has not spent long enough helping you.
 
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