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Stopped taking Insulin- sugar levels ok but not gaining weight.

H

Harihari1

Member
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Hi.. I am separated from my wife. My 12 year old son has had diabetes type 1 for 2 years now but his mum stopped giving him insulin about a year ago and has put him on a special low carb diet so he doesn't have to take insulin. All his readings are showing that he has very good sugar levels and ketone levels are normal as well.. He is also active and seems perfectly healthy.. His diet is carefully managed and is nearly all vegetarian (raw) with fresh organic veggies , super foods ,nuts, seeds , fruit etc. But no grain ,dairy, meat,fish. What worries me is that despite the healthy test results his weight is unchanged, the same as 2 years ago..is this possible?
 
This sounds similar to Dan & Sally Roman (google them) who have two boys they have done this with... I can only assume the ultra low-carb and unprocessed food is keeping your son in the honeymoon phase. As to his weight, he'll be in ketosis, which is why he won't be gaining weight... 'Nutritional' Ketosis and health is a very debated topic; especially in children and pregnant (or ttc) women...
 
If it was me, I'd take my child to a doctor just to check all's ok. You could also speak to a dietician to ensure your son's diet is providing the things he needs for growth - and sufficient calories too.

It does no harm to get him checked out
 
I agree with azure, 2 years without weight gain would worry me that his body is not developing, is he around average weight for his age ? Has he been seen by his diabetic team and if so what are their thoughts ?
 
Agree with the others about seeing doctor to discuss .
What about height ?
 
Hi,
Obviously it's possible not to grow between the age of ten and twelve as your son is still the same two years on.

But why deprive a growing child of the protein from meat and fish to the point where he stops growing? If I were you I'd contact his medical team and ask about it. It could be a case of causing harm to a child, abuse even.
 
Hi,

Sounds a bit like the "Dr" Gabriel Cousens "simply raw" Ranch diet thing to me..?!

Get the lad checked out by a qualified Diabetes team.!
 
That kind of diet might work for a 65 year old senior citizen with a sedentary lifestyle, but it's irresponsible to implement on a growing child.

Carbohydrates are an essential part of muscle growth and development (for the sake of this conversation) and protein absolutely is no matter what your age or activity levels look like.

Just because his blood sugar is under control doesn't mean he's not malnourished.

Your wife/ex-wife needs to stop making the decisions for your son.
 
Are you sure about carbs being the necessary part in muscle growth? I have been lead to believe it's protein.
 
Thank you for all the comments.. Yes his height is increasing, he is just got skinny. I am fairly sure his diet is ok , although very alternative, except for the lack of long lasting carbo like grain etc.. We moved to Japan last year, my wife is Japanese and is deceiving the doctors here, they think she is giving him insulin but she throws the prescription away. Before I do any action I have to be sure my son is in danger, but right now I am not sure.. If I take action and report my wife's activities and it is discovered that there is no danger ( because the sugar and ketone levels ok, and there regular visits to the doctor etc) , then my wife will never let me see the kids again. ( Japanese system in reality gives little rights to fathers) .
 
Hi again.

Wow.
If the prescription is discarded. Is your wife still testing the boys blood? (Normally all supplies are on one script when requested.)
 
Totto said:
Are you sure about carbs being the necessary part in muscle growth? I have been lead to believe it's protein.
Click to expand...
Well, there are certainly multiple elements and protein is essential as I mentioned. One of the other components in muscle growth is insulin and without it (or very little) it's going to be incredibly difficult to gain weight.
 

Is there a friend who could check what's happening with your son? Does he stay with you and do you test his blood sugar yourself? Could you, or a Japanese speaking friend, phone his doctor to inform them the prescription is being discarded, then they might do more tests or speak to your ex-wife? I'm presuming your son still sees a doctor?

I understand your fears re losing your son. I suppose the best thing is to actually discuss it with your ex, if she's willing.
 
He is testing his own blood regularly , several times every day, and then he gets the monthly checks at the hospital which all show he is managing things well. He still seems to be in the honeymoon period ,which is surprising as it is 2 years since he was diagnosed. If it wasn't for the no weight gain I wouldn't be worried. His mum has read blogs and books about say diabetes can be cured through diet ( confused with type 2) , and she doesn't believe in western medicine anyway so it fits her view of the world.. I am not sure if it has anything to do with the diabetes but he still wets his bed every night ,aged 12, which is of course quite unusual.
 
The bed wetting could be completely unrelated. But he could check his blood sugars in the night to make sure.

The lack of weight gain would worry me a lot. I have no idea what his diet consists of, but before insulin, people basically ate vegetables like thrice-boiled cabbage to keep their blood sugar down as long as possible. Obviously they lost a lot of weight.

Can you speak to your son's doctor in confidence? That would probably be the first thing I'd consider.

I understand Type 1 is rarer in Japan than the UK. Could you get your son's doctor to give your ex some info sheets? Maybe she just lacks a full understanding? Your son is old enough to speak to you and comprehend what's going on, so what does he think about it?

Edited to add that there are two issues here - his diabetic control and his growth and weight. One shouldn't compromise the other.
 
While it's quite obvious your ex-wife is putting your son in danger, it may be difficult to actually prove that from a legal standpoint.

However, there will eventually become a point (with 99.9% certainty) when your son is no longer able to survive off the small amount of natural insulin he still produces. His growth will likely slow or stop altogether, his blood glucose levels will rise, and there will be no way to avoid becoming insulin-dependent

The situation will become more and more serious over time and DKA can develop very rapidly and be deadly if not properly treated.
 
Thank you for the comments.. Yes ,I think it might be hard to prove legally that there is harm being done right now. Having read the comments it is confirming that I need to talk to the doctor to check that he is aware of the weight situation. Unfortunately my son has been brain washed by his mum to think that insulin is dangerous, but does understand about sugar levels and ketone levels etc.. It did cross my mind that maybe he is has been diagnosed wrongly as diabetic type 1 when really he is type 2 or another type of diabetic type 1, or something like that.. However it still comes back to the problem of lack of weight gain. He is 141cm tall and 30kg...the recommended range using an Internet calculator is a range of 29.8- 41kg. So he is right at the bottom of the range..
 
Children with Type 2 are usually overweight. If you son has diabetes, it's far more likely to be Type 1.

Sometimes the honeymoon period in Type 1 can last for months and months. Also, many children are on tiny doses of insulin but without it they would gradually become ill.

For me, the point is that a doctor decided your son needed insulin yet his mother is throwing away the prescriptions. That is worrying as it implies she's deceiving the doctor rather than talking to him about your son..

Maybe you could gently try to remove the 'brainwashing' by providing your son with some facts, and emphasising the importance of insulin - and an appropriate diet which provides nutrition for growth and development. A diet that controls his blood sugar by starving him if crucial nutrients wouldn't be good at all. He does sound thin for his age...

keep us updated if you're able to. Wishing you and your son all the best.
 
Things don't add up. I went to the last check up , joining my wife and son. He looked like he had been losing way too much weight and he had, he was at 30kg for the last 2 years, but dropped to 27kg since 2 months ago. Yet his hemoglobin levels and ketone levels were normal . Yes , the wife still doesn't give him insulin ( against my wishes and she hasn't told the doctor of course). How can this be? The low carb diet can explain the low sugar levels but surely ketones would appear as he is only 12 and needs energy. The losing weight is a sign that he doesn't have enough insulin, but there are no ketones.
 
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