My son's diabetes doesn't fit in any box - a real puzzle

[carolinefish]

Hi everyone!
I'm new to all this - no family history of diabetes and I only know what I've read about it. So apologies if talk of 'boxes' is wrong - maybe no diabetic fits exactly any one label? I really don't know. But he has puzzled the medics ever since the start, which alarms me...

My son is 14 and got diagnosed with type 1 three months ago. His blood sugar was 29, his long term control measure was 143 instead of 40 odd. He had been weeing excessively for 2 years (in hindsight) and had changed from a chubby boy to a taller skinny teen boy in that two years - which we thought was puberty. He started puberty at 9yrs.

He had no keytones. Just a headache and sore back which may or not have been due to excessive mountain biking. GP picked up sugar in wee after I got son to take a sample in, I suspected wee infection. He was admitted to children's ward after blood test. His levels suggested to them that he should be in a coma but he was well. The GP was off the scale concerned when the bloods came back to surgery, immediate attendance at GP surgery needed, big panic.

His levels have come down over the 3 months using lantus and novorapid. He needs what the consultant says is high amounts of insulin - 19 units on lantus. Can't remember his bolus but they keep creeping it up because his levels are running often around 11 but down from high 20's originally, so better.

He feels ill if his levels go down to 4-5 but tolerates 6-7. If he's high he feels completely fine. He hasn't noticed any increase in his energy levels, I haven't noticed any change about him other than he isn't weeing as much, is hungrier and that he has put on weight. 10kg in the 3 months.Which is half a stone a month. Which isn't welcome as if he keeps on like that he's going to be far too fat. He's just about the top side of ok right now.

We just got told that all of the autoimmune tests are negative, but the consultant feels that his patterns for needing insulin don't fit type 2. He's getting MODY tests now, but when I've looked online then none of the descriptions fit.....

My main concern is that taking insulin is damaging him and that he has got something else, probably really rare, which isn't being treated. The new test results aren't expected back in time for our next appointment in December. So test results in the New Year. Which seems a long time to be giving artificial drugs and maybe messing up his pancreas forever.

I've no intention of saying this to my son, or interfering with his treatment and he will just follow what they say. But underneath I'm extremely worried

 

[Sally71]

At his age he's highly unlikely to be type 2, although it isn't impossible. I don't know about MODY, but what type he is is less important than getting him the right treatment. Don't get hung up on how much insulin he needs, everyone is different! My daughter's total basal (equivalent to your son's Lantus) is 38 units per day at the moment, so I don't think 19 is high at all! But she is right in the thick of puberty at the moment, and I've been told it's quite normal for insulin requirements to at least double for a few years during this time, and then once she stops growing it should settle down again. When she was first diagnosed at age 6, her total daily requirement of insulin (all basal and meal boluses added together) was only 20 units for the whole 24 hours!

As your son's blood sugars are dropping then the treatment is obviously working, there will be a lot of adjustments needed until the right dose is found. They won't want to drop his blood sugars down too quickly because that will be too much of a shock for his body and he'll feel dreadful, as he does at the moment around 4-5. He probably feels fine when he's high because that's what his body has got used to for the last few months. That will gradually change as his body gets used to having insulin again!

And as far as lack of ketones go at diagnosis, the tests are not deadly accurate. When I initially took my daughter to the GP, suspecting diabetes, he did a urine test which was apparently normal. But luckily he did agree to do laboratory blood tests on her just to be thorough. Just 6 days later she had fasting glucose of 18, finger prick glucose test off the scale (more than 33) and urine now full of sugar and ketones. So things can change very quickly!

It's very early days for you so all still a bit of a shock I'm sure, we're all very friendly here though so please ask away if you have any more questions. Nothing is too stupid, we've all been there and it can take a long time before you feel really confident that you know what you are doing with diabetes! Good luck 🙂

 

[Bruce Stephens]

Which seems a long time to be giving artificial drugs and maybe messing up his pancreas forever.

As far as I'm aware the insulin isn't likely to be causing any damage to the pancreas. (If I remember correctly one idea for treating type 1 (if caught early enough) included aggressive treatment with insulin (along with something or other to try to reduce damage caused by the immune system).)

Obviously I'm not a doctor (well, not a medical one) and I've no more information about your son than you've given, but I think what's happening is likely safest: assume it's type 1. (Maybe he's got something other than type 1, but my guess is it'll turn out to be type 1. Even so, for the moment it seems safest to treat it as though it were, since we know high blood glucose is harmful, and we know that while taking insulin there's a risk of low blood glucose, so watching for that is really important.)

The levels of insulin required are really individual things, and they vary over time (from day to day). 19 doesn't scream abnormal to me (and presumably if the level had been 417 or something the doctors would have been running around in panic trying to find out what was wrong). (Not that 417 would necessarily be wrong, but it would be really unusual.)

 

[mikeyB]

What, if any, advice have you been given about diet and matching insulin to carbohydrates? Insulin doesn’t make you put on weight, it’s a natural hormone that we all produce to manage what we eat.

 

[DaveB]

Hi. It sounds like your Son is following the expected track for a T1. The insulin will be doing no harm and a lot of good; it's a hormone very similar to the bodies own insulin. Note that to avoid unwanted weight gain with insulin your Son will need to control the carbs and have enough fat and protein to keep hunger at bay and to provide a balanced range of nutrients. Don't worry about advice to 'avoid fat' as we need it and we don't need many carbs. You don't mention whether your Son is carb-counting yet? That means adjusting the NovoRapid to take account of the carbs in the next meal. Doing carb-counting gives the best overall control and minimises hypo risk and allows eating flexibility. Do ask the nurse or consultant for advice if necessary. BTW auto-immune tests can be negative (mine was) as there are many causes of beta cell death including viruses.

 

[Diabetes UK]

I am just moving this over to the 'Parent' board. 🙂

To reiterate what others have said, the important thing is that your son's bg levels have come down to a much safer level. So, whether he has received the right diagnosis yet or is using a higher dose of insulin, you are moving in the right direction. With such high BG levels before, the insulin will be doing (as Dave has said) a lot of good.
It is great that his GP is being thorough and exploring all possibilities to ensure that your son does get the right treatment. In the meantime, the period in between appointments will be uncertain, but overall, it is great news that this was picked up before he became more unwell.

 

[Sally71]

He's putting weight on because his body can finally use food properly again and is trying to build itself up again after all the weight he lost before he was diagnosed. My daughter was absolutely starving and would eat anything in sight just after she was diagnosed, although it settled down after a few weeks. So again don't worry too much about that, just make sure your son is eating a reasonably healthy diet and not ridiculously large portions and he should be fine.

The more I read on this thread the more certain I am that he's a pretty typical type 1. I don't know if antibody tests were ever done on my daughter, nobody told me and I didn't ask, it was just accepted that she's T1 and the treatment works so that's what counts.

 

[stephknits]

Just to agree, seems like a typical type 1 to me. Lots of teeenagers use a lot more insulin - so 19 units a day seems quite normal.

 

[carolinefish]

You have all been great, thank you for all the comments. Really reassuring. xx

 

[carolinefish]

Hi. It sounds like your Son is following the expected track for a T1. The insulin will be doing no harm and a lot of good; it's a hormone very similar to the bodies own insulin. Note that to avoid unwanted weight gain with insulin your Son will need to control the carbs and have enough fat and protein to keep hunger at bay and to provide a balanced range of nutrients. Don't worry about advice to 'avoid fat' as we need it and we don't need many carbs. You don't mention whether your Son is carb-counting yet? That means adjusting the NovoRapid to take account of the carbs in the next meal. Doing carb-counting gives the best overall control and minimises hypo risk and allows eating flexibility. Do ask the nurse or consultant for advice if necessary. BTW auto-immune tests can be negative (mine was) as there are many causes of beta cell death including viruses.

Thanks Dave. yes he is doing carb counting and bolus stuff. But the diet advice to children seems to be carb heavy and eat stuff with artificial sweeteners in it. Which seems all wrong to me when I've kept pop and sweets to the tiniest proportion of his diet. Becuase he's getting the 'don't change much about your diet, eat healthy, eat lots of carbs' advice he is eating more carbs now than he did before! I think that the children's diabetes team are aiming for advice which causes children to accept the diabetes and manage it rather than ignore it or sneak eat stuff which wrecks their sugar levels. I have been peeved with the 'healthy plate' advice for years as it is patently wrong. But even worse to trot it out to diabetics. I'e read a lot on the forums about diet and carbs. I'm trying to pile up the veg and increase his protein - which the dietician said not to do, as the protein is harmful later she said. Anyway, he has a lot of growing and repairing to do, which uses protein, so I'm attempting to follow that. But school meals are his choice and he is piling up the pasta. His chosen breakfast of 6 slices of toast just after diagnosis were causing hypos every time. No trouble after bacon and scrambled eggs.....
Its all a learning curve.
Thanks for the info about Beta cell death. I'm really wondering what has caused it. I saw some research that said that the cells from Type 1 diabetics islets recover outside the body - but maybe thats just with the autoimmune type, as I'd have expected a virus to clear itself eventually?

 

[Lizzzie]

Hello!

This sounds very similar to the T1 diagnosis I got in my late 20s. Turned out I couldn't eat 'what I liked and stay skinny' after all; it's that in T1 your body can't use the sugar you eat, even to store as fat, so you don't put on weight; you just keep the sugar in your blood and then wee it out. It creeps up on you slowly - i' d barely noticed a change in the amount I was eating, but when i looked back Id been eating loads just before diagnosis. As soon as I started taking insulin and my body started using the carbs, I started putting weight on and at this point, I had to cut my carb intake back to normal to avoid weight gain. Luckily I was also feeling less hungry.

Does your area have specialist diabetic nurses, or training courses for diabetics? GPs can't know enough to deliver all it as well as the , specoalist nurses and DAPHNE courses.

Dietwise you sound to have done your reading; I always understood that your sons nutritional requirements are now exactly the same as for any other child his age.

It's a frustrating learning curve learning to dose insulin and watching someone else go through it must be more so. The temptation to want to make decisions for him must be huge - as a parent it's something I'm very scared of for that reason. I dont know the answers, but for me getting kids to become experts on their own condition, and read up on it, and tell you what they should be doing, sounds the best. DAPHNE courses, training, asking the awesome people on this forum for tips, constantly checking with the Dr you're doing ok .......

Best of luck on the journey both of you!

 

[Lizzzie]

Hello!

This sounds very similar to the T1 diagnosis I got in my late 20s. Turned out I couldn't eat 'what I liked and stay skinny' after all; it's that in T1 your body can't use the sugar you eat, even to store as fat, so you don't put on weight; you just keep the sugar in your blood and then wee it out. It creeps up on you slowly - i' d barely noticed a change in the amount I was eating, but when i looked back Id been eating loads just before diagnosis. As soon as I started taking insulin and my body started using the carbs, I started putting weight on and at this point, I had to cut my carb intake back to normal to avoid weight gain (actually I didn't and I maintain that some weight gain is healthy in this situation). Luckily I was also feeling less hungry.

Does your area have specialist diabetic nurses, or training courses for diabetics? GPs can't know enough to deliver all it as well as the , specoalist nurses and DAPHNE courses.

Dietwise you sound to have done your reading; I always understood that your sons nutritional requirements are now exactly the same as for any other child his age.

It's a frustrating learning curve learning to dose insulin and watching someone else go through it must be more so. The temptation to want to make decisions for him must be huge - as a parent it's something I'm very scared of for that reason. I dont know the answers, but for me getting kids to become experts on their own condition, and read up on it, and tell you what they should be doing, sounds the best. DAPHNE courses, training, asking the awesome people on this forum for tips, constantly checking with the Dr you're doing ok .......

Best of luck on the journey both of you!

 

[Lizzzie]

Changes the wording on this one: it's not necessarily right to avoid weight gain. It depends how much weight he lost prior to diagnosis

 

[SB2015]

His chosen breakfast of 6 slices of toast just after diagnosis were causing hypos every time. No trouble after bacon and scrambled eggs.....

Hi Caroline

Reading through your posts, this bit stood out. If your son is getting hypos after dosing for a large Darby meal (the 6slices of toast) and finding things are fine on the low carb meal, I am wondering whether it is his carb to insulin ratio that is a problem. If he is hypo he has too much insulin. If he is carb counting correctly, and he has no problem with the Eggy breakfast (so basal insulin is okay) that leaves the carb ratio.

I know this was not the focus of your original post but it may be useful to look at with him and his DSN.

 

[HOBIE]

Welcome Carolinefish. You have joined a good site. There is nothing straight forward with T1. Good luck & keep him active.

 

[TheClockworkDodo]

Hi Caroline and welcome. I won't add much as you've already been given good advice and info. here, but just to say my diabetes doesn't fit in any boxes too, and I baffled the specialists, with no history of diabetes or other auto-immune disease in my family (though my auto-immune results were off the scale). I thought I was unique until I came on this forum, and then I found that not fitting the boxes was surprisingly common! @Northerner would be able to tell you more about that, he is also a very unusual type 1. His was caused by a virus; mine is secondary to another illness I have.

The other thing is, like SB2015, I picked up on the carby breakfast causing your son to hypo. It is likely that she is right and he needs to lower his bolus to carb ratio, or lower it at breakfast, as it will vary through the day. But as he seems to be unusual in other ways, it might also be that he has the same problem I have, which is that after eating carbs I spike and then plummet and hypo (I seem to have some form of hypoglycaemia, though that's not supposed to be possible with type 1!). I'm in the situation where, if I put up my bolus dose of insulin to prevent the spike, I plummet even further later and become very badly hypo - but if I lower my bolus dose to prevent the hypo my blood sugar spikes into the teens - and I usually still hypo anyway. The only way to deal with it seems to be to eat smaller, but more frequent meals, and to try to mix the carbs up as much as possible with good fats (eg cheese or yogurt) and proteins to slow things down. It might be worth getting your son to test 1-2 hours after eating carby foods and then again after another 1-2 hours to see if he is spiking before he hypos. Don't worry if he spikes a bit - that's normal - but if he's spiking a lot and then still hypo-ing he might be having the same problem I have - in which case changing the bolus ratio won't help, only changing the way he eats.