• Guest - w'd love to know what you think about the forum! Take the 2025 Survey »

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

Just to add. For the last year or so we live seperately、I am not allowed any say in his diet or diabetes management , and before I open up to the doctors etc about what my wife is up to I have to be sure that the lack of insulin is causing this lack of weight gain.
 
Harihari1 said:
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.
Click to expand...

I don't know about the ketones but I'm going to tag @TorqPenderloin as he eats low carb and has commented on this thread previously.

I think there are two issues here - the diabetes and your son's health and growth. If he's maintaining his in range sugars by 'starving' then that's obvuously worrying. When I was first diagnosed, I ate normally but only needed a small amount of insulin. If I'd eaten minimal carbs, I could have probably gone without insulin for quite a while, but I'd have had to severely restrict my diet to do so.

Did your son's doctor comment on his weight loss? Surely that would be a worry?

I completely understand that you need to be very, very careful not to antagonise your son's mother, but could you have 'innocently' mentioned the fact your son's not getting insulin in the meeting? If not, can you speak to the doctor in confidence and tell them? Ask them not to tell his mother you said anything.

Does your son see a dietician?
 
Thank you @azure for tagging me, and I agree with what you wrote.

This situation seems to be a classic example of the honeymoon phase, and it's something I'm personally dealing with myself (although I'm a fully grown adult).

A regular a1c, no ketones, and weight loss suggests that your son is eating just enough carbs to remain in glycolysis (rather than ketosis), but his total calories are being restricted which is causing the weight loss.

Like mine, his pancreas is probably producing just enough insulin to keep him alive and healthy, but not enough to sustain his weight and certainly not enough to promote healthy growth.

Eventually what will happen:
-Your ex-wife will have to continue lowering his carbohydrate intake as his insulin production decreases. Eventually, he will begin producing ketones through nutritional ketosis.

-After that, his pancreas will no longer produce enough insulin to regulate his blood sugar levels and his a1c will begin to rise, and his ketone levels will further increase.

-Without intervention, that will lead to extremely elevated glucose levels, elevated ketone levels, and ultimately Diabetic Ketoacidosis.

I'll make my position on this matter very clear: if your ex-wife was someone I knew personally, I would have called the authorities long ago as I believe this is essentially child abuse. I'm very passionate about the subject of ensuring children receive the proper medical treatment they deserve. They don't get a voice in the matter, and this isn't fair to your son.
 
Harihari1 said:
Just to add. For the last year or so we live seperately、I am not allowed any say in his diet or diabetes management , and before I open up to the doctors etc about what my wife is up to I have to be sure that the lack of insulin is causing this lack of weight gain.
Click to expand...

No one except a medical expert can say that for sure, but I agree with what @TorqPenderloin suggested above - that his pancreas probably isn't producing enough insulin to promote healthy growth.

None of my children have Type 1, but I know that children with it in the UK are carefully monitored to make sure they're growing properly. I would also point out that your son will be approaching puberty soon, and insulin needs generally increase then. If his mother is scared of insulin, then he could become ill if his insulin requirements aren't met.

If you can speak confidentially to his doctor, you don't need to phrase things in a definite or accusing way. You could simply state what your ex-partner is doing - not giving your son his prescribed insulin - and say you're concerned about his growth and development and future health. If it was me, I'd be very careful to stress that my input was confidential and I'd hope that the doctor would be able to raise the matter with your ex without giving away where they got the information from, eg they could say recent blood tests showed the lack of insulin or whatever.

My heart goes out to you - it must be awful worrying about your son and feeling it's hard for you to say anything because of the circumstances.

"
 
The sequence of events Tork stated is exactly how it is going to happen. It happened to him and it happened to me as well as many others. Tork and I were both adults when this happened and fully grown. Bones muscles height etc. I would hate to see this stunt his growth permanently. I am much more worried about the no protein. It is essential.
As azure said, have a confidential meeting with the Dr and explain what is going on. Do you know the results of the tests that the Dr is basing insulin needs on? I would assume you are entitled to those tests results. Whatever is going on between you and your ex wife needs to be put on the back burner and focus ONLY on your sons health.
 
Hi. I really appreciate this feedback. It really helps. Thanks.What you say all makes sense to me. The Honeymoon period must have ended, after lasting 2 years although his last HbA1c reading was 5.8 which is normal and he had no Ketones. We were in the UK when he was first diagnosed and had excellent care from the Radcliffe Hospital , so I have some benchmarks to measure things and as you say things don't look good with him losing weight etc. Japan is a bit behind in terms of diabetes management . However I know that when I tell the doctor about him not having insulin it will change things dramatically for everyone, so I am not quite ready to do that , but nearly. He will be obliged to pass on the information and the authorities will step in. What I thought was good was that when we met him he did say he thought it was odd the weight had decreased, and I did tell him I was worried about it. So the doctor requested Hari come back in 1 month rather than 2 months. ( he had just been switched from a 1 month check up to every 2 months as his readings were so good !). So in my mind the doctor is onto the case, and he also thought it odd that the Lantis had been reduced so much , they just made up the numbers so it looks to the doctor like he is being 'cured' of diabetes and so no more doctor visits would be needed. I have ordered a Ketone meter from the UK, I can't buy one here! So he can measure himself , he knows he has to gain weight otherwise alarm bells will ring with the doctor which risks their experiment being revealed. However as you say , it is very likely that he won't be able to gain weight. Sadly my son won't listen to me, he hates me, because over the last 2 years his mum and me have been fighting over this insulin thing and of course he sided with the mum as she hates me for revealing to the UK doctors that she was trying to stop him having insulin which triggered UK social services to step in. Both wife and son see me as the bad guy who caused the diabetes by taking him to a restaurant once every 2 weeks , so you can how delusional she is. In Japan I consulted a lawyer a while back and he said that right now I don't have enough evidence to make the authorities do anything. My wife ( separated , not divorced) has got better at lying as well and if the Japanese authorities did get involved I wouldn't be surprised if she just left the country with kids and do a runner. She is totally convinced that all the doctors are wrong, the system is fixed do drug companies can make money from insulin and that diabetes can be cured via natural means, i.e. She is also confusing type 1 and type 2. This is clearly a case of 'confirmation bias ', she has a set of beliefs that doctors are bad , anything but vegan is bad , and any medical problem is caused by diet and can be cured by diet. I will keep you updated and again thanks so much for your helpful advice. ! Don't hesitate to let me know if I am doing things wrong, but right now the plan is to be extra vigilant, monitor, apply pressure on wife to get his weight up, and if things don't improve to to the doctor in confidence my concerns.
 
Hi @Harihari1 Getting the ketone meter is a very good idea. I'd also suggest you gently educate your son about Type 1. Make sure he understands that it's an auto immune disease and that something made his body attack the islet cells in his pancreas. What causes that isn't yet known, but it won't be eating at a restaurant...

Also, impress on him the danger signs to watch out for. Speak to him like an adult so he doesn't think you're patronising him, and explain you're 'causing a fuss' because you care about him so much. Your message will get through eventually.

I understand Type 1 isn't common in Japan so maybe your ex partner has an excuse in confusing it with Type 2. If you could explain to her the difference that might help, but I understand that very well might not be possible.

There is no cure for Type 1. If it was really as easy as not eating meat or something, then believe me I'd do it tomorrow as would most other Type 1s. I'd hope your ex partner would realise that - that if it was that simple we'd all be doing it and all be walking around merrily cured.

I'm pleased you're seeking legal advice and support. It sounds like an extremely delicate situation. Please do keep us updated if you feel able.
 
Hi. What I don't understand is that if his lower weight , from 30kg to 27kg is due to the end of the honeymoon period and a lack of insulin , how his ketone level (and sugar level) can be still normal ? It doesn't make sense , something is missing.
 
When I was diagnosed I had lost more than 6kg (well over 10% of my body weight) but I didn't have ketones. So losing weight doesn't always make ketones, I think it depends what sort of tissue is being burnt through. His blood sugar is controlled by his low carb diet. It maybe that he is still honeymooning unless he has had a c-peptide test you won't know if he is still producing his own insulin & even then a honeymooning pancreas can just make insulin in fits & spurts. It sounds like his body is just about able to cope without being seriously ill at the moment - just about able to cope isn't good enough when he could be positively healthy with insulin.

What your son is missing is insulin & a doctor who knows what is actually going on. If you really think that the weight loss isn't caused by his untreated diabetes the only way to get to the bottom of it would be to discuss it with his doctor. I appreciate that might be difficult for you in the circumstances but I don't see another option.
 
I had a really useful private meeting with the doctor and told him everything . He had already worked out my wife hadn't been giving insulin and the fact that I met him really helps as they know my son can be moved to stay with me if needed. Apparently the doctor was watching things closely , yes he is concerned but the sugar levels and ketone levels were normal and his body is actually producing s similar amount of insulin as a normal person which is quite unusual after over 2 years. His anti-immune data however is a bit above normal. Clearly he is still in the honeymoon period but the data is taking a different path than usual sobthey are going to do some additional tests including DNA test as there is s possibility his diabetes is slightly different from normal. At least he is aware and if needed they will get social services involved.


Sent from my iPhone using DCUK Forum mobile app
 
That is wonderful news to hear and it makes me happy to see that his doctor was already aware of the situation. It is a bit unusual for your son's honeymoon phase to have lasted this long, but certainly not unusual and that may have been one of the short-term benefits of the low carb diet.

As I mentioned previously, the situation is definitely serious, but the real issue will be when the time comes that your son DOES need artificial insulin to survive, and there's no telling how your ex-wife will handle that.
 
Yes that's correct. So the doctor said that when that time comes he will bring in social services and I would look after my son.


Sent from my iPhone using DCUK Forum mobile app
 
I am so pleased that the doc could put your mind at rest and provide you with a pathway of hope for the future.


Sent from my iPad using DCUK Forum mobile app
 
Back
Top