My Son Age 14 Wierd Diabetes Presentation

[Caroline F]

I'm concerned that the medical folk dealing with my son's probably type one diabetes are hoping for the rest of his insulin producing cells to die, to make management easier.
Is there any way to preserve them or boost them?
I'm a sceptical type of person and have avoided medical intervention and antibiotics etc for my children, believing that there is usually new research that in my experience takes fifteen years to become mainstream and for doctors to implement it.
I don't want to miss something here which misses an opportunity to mend my boy.
Obviously we are sticking with the program we've been given to the letter. Carb counting, testing, insulin injections....
He presented in a strange way apparently. In that despite his long term sugar control level test was 160+ rather than the 40 aimed for he wasn't unwell. He had lost half a stone in the ten days prior to diagnosis, but also had changed from quite a chubby boy to tall and skinny in two years. Which I put down to early puberty. He also in hindsight had been drinking and weeing more in that two years. But it was so gradual as to be unnoticed.
Has anyone got any good advice please?

 

[urbanracer]

I'm concerned that the medical folk dealing with my son's probably type one diabetes are hoping for the rest of his insulin producing cells to die, to make management easier.
Is there any way to preserve them or boost them?
I'm a sceptical type of person and have avoided medical intervention and antibiotics etc for my children, believing that there is usually new research that in my experience takes fifteen years to become mainstream and for doctors to implement it.
I don't want to miss something here which misses an opportunity to mend my boy.
Obviously we are sticking with the program we've been given to the letter. Carb counting, testing, insulin injections....
He presented in a strange way apparently. In that despite his long term sugar control level test was 160+ rather than the 40 aimed for he wasn't unwell. He had lost half a stone in the ten days prior to diagnosis, but also had changed from quite a chubby boy to tall and skinny in two years. Which I put down to early puberty. He also in hindsight had been drinking and weeing more in that two years. But it was so gradual as to be unnoticed.
Has anyone got any good advice please?

Hi @Caroline F

Welcome to the forums.

We tend to think that diabetes it quite unique to the person with the disease and therefore would probably refain from using the word 'weird.' Sure there are accepted norms but it often seems that everybody has their own story to tell that is a little different to the others.

Most doctors will tell you that T1 diabetes develops over weeks or months but many here (including myself) will testify that our diabetes developed over several years. My doc told me my blood sugars were "a bit high" 3 years before my pancreas finally gave up. As you're probably aware, it is is quite normal for a T1 to present with weight loss and frequent urination and there are physiological reasons for this.

I understand that you want to do the best for your son but there is currently no cure for T1 diabetes on the horizon, although there are many charlatans on the internet so please be cautious when you read promises of miracle cures/foods etc. There is some interesting research going on, (I read something a about a vaccine for very young children yesterday) but it seems the holy grail of a cure is always 10 years away. Your son may get lucky and see something come to fruition in his lifetime, I'd certainly like to think that the situation will change.

As for prolonging the life of the pancreas, it may seem counter intuitive but it could actually make management of the condition more difficult. Many T1's experience something called the honeymoon phase - when a person starts injecting insulin it gives the pancreas a rest and it produces a little insulin (at least that's the theory) - this is often sporadic and adds to the injected synthetic insulin causing low blood glucose when you least expect it.

In the short term, improved methods of managing the disease through more efficient glucose monitoring and insulin delivery systems is the best that we can realistically hope for.

 

[Caroline F]

Ah right, thanks for that. Diabetic nurse said his case was odd, hence the word wierd. Sorry. Every medic that saw him were surprised he weren't flat on his back.
I suppose I'm hoping it's not type 1 because it's so hard seeing him with all this kit and coping with all the admin and planning and hypos.
Also the advice we've been given seems counter intuitive in that the lad is hungry and going for sandwiches toast pasta etc and shooting up loads of insulin. But when I said to the dietician, so he'll need more meat/veg type diet then, she was adamant that it would be damaging. Healthy plate stuff, lots of carbs, low fat stuff and I know she was going to recommend artificial sweeteners until I nipped it in the bud saying that was banned at home.
None of this seems like a good idea....
I'm browsing your forums for more ideas but I wouldn't be at all surprised to find this is out of date diet advice. Especially as I thought the low fat diet thing had been blown out of the water.....

 

[Circuspony]

Children usually are hit hard and fast by the onset of T1 - but there are exceptions of course. I was diagnosed at 43 with levels of 147 and felt fine. I saw my GP because I was concerned about weight loss but I think he was thinking cancer before the urine test flagged up high sugars and ketones. No history of T1 in my family so out of the blue.

The advantage to an extended honeymoon period is it will protect your son's other organs for longer. I'm pathetically grateful for injectable insulin but the pancreas will always do a better job!

 

[ickihun]

In my experience whether type1 or type2 too much carbs increase insulin need. Insulin is great for the level that's needed for your boy's ideal weight and replacing his on/off natural insulin production. Which if his body's production is unreliable he's fortunate to have a free replacement on the nhs.
The management of being a mind reader in regards to how much insulin is needed in the honeymoon period can be hit and miss (hence hypos and overeating due to the wrong level of insulin in his system).

All we can do is our best. Little changes influence little repercussions and then titrate changes from there. Sometimes constantly.
May at times be exhausting.
Diet does help but your son may have to have a hugely different diet to you. This again is best to be changed a little to pick up it's full influence. One thing at a time. No ideal diet for ALL diabetics.
Its work searching for the best diet as you've noticed an influence which can change any diabetic into a hugely insulin resistant one. Good management is the holy grail til a cure.

 

[Resurgam]

I was told that the low carb foods my children ate would stunt their growth - they had carbs too, just not constantly shoveling them in. My son - who was the most consistently low carb right from conception - is 6 ft 3 or 4 and my daughter is about 5 ft 9 or 10.
High carb foods fuel hunger and weight gain for the wrong reasons in everyone, we need protein for our bodies for growth and repair, and fats, as lipids, are essential for nervous system and brain - it is what they are made from.

 

[JMK1954]

There is no harm in your son eating extra meat/fish and vegetables. As he is still growing, the NHS advice is to give him something pretty close to a normal diet. It is nomal for anyone recently diagnosed to be extremely hungry. It is the body's response to the loss of weight that has occurred previously. I was diagnosed at the age of 10 and can remember just how starving hungry I felt. The important thingis that his BS levels are controlled.

 

[KK123]

Well my advice would be to completely cut out all of the obviously rubbish carbs if he eats them of course, such as sweets/crisps/cakes/pizza's/fried rubbish with batter/processed stuff/full fat fizzy drinks and so on, (apologies if he eats none of that, I am on about an average 14 year old). That alone would take care of a large percentage of his diet. Because he is 14 and growing I think I would keep wholemeal bread/wholemeal pasta & rice etc down to a SMALL level and heaped with the good homemade meat sauces that go with them. I personally would not want my child to go extremely low carb at that age hence the above. I would up the veg (again I wouldn't be too worried about root veg but maybe limit them slightly), I would feed him a normal amount of dairy and fish etc. In other words don't become extreme about his diet but focus on limiting the stuff you know raises his levels. Others may suggest no pasta or bread etc as it can be hard to match up the insulin but I reckon once he knows how much he needs for 15 to 20 carbs (1 slice of bread or a tablespoon of pasta etc) he might be able to steady his glucose levels. Hope this helps. x

 

[Caroline F]

In my experience whether type1 or type2 too much carbs increase insulin need. Insulin is great for the level that's needed for your boy's ideal weight and replacing his on/off natural insulin production. Which if his body's production is unreliable he's fortunate to have a free replacement on the nhs.
The management of being a mind reader in regards to how much insulin is needed in the honeymoon period can be hit and miss (hence hypos and overeating due to the wrong level of insulin in his system).

All we can do is our best. Little changes influence little repercussions and then titrate changes from there. Sometimes constantly.
May at times be exhausting.
Diet does help but your son may have to have a hugely different diet to you. This again is best to be changed a little to pick up it's full influence. One thing at a time. No ideal diet for ALL diabetics.
Its work searching for the best diet as you've noticed an influence which can change any diabetic into a hugely insulin resistant one. Good management is the holy grail til a cure.

That's really interesting, thank you. Could you explain a bit, how having the wrong levels of insulin can lead to overeating please? Luckily this kid is the least fussy eater of them all, so I would be able to make changes I'm sure. He has a good diet as it is but since diagnosis has been putting away like six slices of wholemeal toast in one breakfast which has me concerned!

 

[Caroline F]

Thanks for all these replies, extremely helpful. My son is coping really well generally, but he's putting weight on really quickly and I want to make sure he isn't hungry but also slow this gain down. He doesn't eat junk, which is a good start. But he's eating more frequently. I'd fill him up with carbs as a first resort but think probably eggs, meat, cheese might be better....

 

[Caroline F]

Children usually are hit hard and fast by the onset of T1 - but there are exceptions of course. I was diagnosed at 43 with levels of 147 and felt fine. I saw my GP because I was concerned about weight loss but I think he was thinking cancer before the urine test flagged up high sugars and ketones. No history of T1 in my family so out of the blue.

The advantage to an extended honeymoon period is it will protect your son's other organs for longer. I'm pathetically grateful for injectable insulin but the pancreas will always do a better job!

Thanks, I guess it was a relief that it was diabetes for you.....
You mention keytones. The other strange thing was that my son had no keytones. But this very high reading for long term sugar. Would anyone know why that would be?!