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Type 1: Accused of Münchhausen by proxy

I

istari

Member
Messages
5
Type of diabetes
Parent
Treatment type
Insulin
Hello
I am completely new to this site. My son was diagnosed with type one at 6 years old. Lately he has been suffering a lot of hypos, to cut a long story short the doctor thinks that I am causing this. I am not. Does anyone know of a reason this could be happening, he is 13 , no one else in the family suffers with this condition. It appears not only does he have to put up with diabetes, he now has to be scared he is being taken away by social services. They have done a c-peptide test, which has shown nothing.Any help would be appreciated.

Jane
 
Has he been checked for coeliac recently? how long have the hypos been happening and what have you done to try and avoid them?
 
Hypos are caused by too much insulin. But a circumstance of too much insulin can be created by a huge range of things, one which might be patient or care giver giving too much insulin deliberately to induce a hypo - but that has to be miles down a very long list of possibilities.

To investigate unusual hypos have you/your sons health team tried:
1. Basal testing
2. Reducing insulin to carb ratio and or adjusting meal time macros
3. A period of continuous glucose monitoring and details of when and what food was taken in and when and what activity was undertaken
4. Investigations to exclude gastroparesis / carb absorption issues
5. Investigations to exclude insulin absorption issues - does he have any lipohyptrophy?
6. Insulin pump

Given the concerns raised do ensure to discuss any next steps with the health team before taking any action.

Did they express their concerns that explicitly (ie we think you have munchausens and are causing the hypos) or is that just an unsettling impression you have been left with?
 
I second the coeliac screen suggestion. Can you tell us a little more about when he's getting these hypos?

I'm presuming you're carb counting and adjusting his meal time insulin to match?

Have his doctors done tests to rule out things like adrenal problems, etc?
 
istari said:
Hello
I am completely new to this site. My son was diagnosed with type one at 6 years old. Lately he has been suffering a lot of hypos, to cut a long story short the doctor thinks that I am causing this. I am not. Does anyone know of a reason this could be happening, he is 13 , no one else in the family suffers with this condition. It appears not only does he have to put up with diabetes, he now has to be scared he is being taken away by social services. They have done a c-peptide test, which has shown nothing.Any help would be appreciated.

Jane
Click to expand...

Oh dear, that sounds like a waking nightmare.

I'm not T1, but I understand things like growth spurts and hormones can play havoc with matters. At 13, he seems in the correct age bracket for that to be considered?

Again, I stress, I'm not a T1.
 
istari said:
Hello
I am completely new to this site. My son was diagnosed with type one at 6 years old. Lately he has been suffering a lot of hypos, to cut a long story short the doctor thinks that I am causing this. I am not. Does anyone know of a reason this could be happening, he is 13 , no one else in the family suffers with this condition. It appears not only does he have to put up with diabetes, he now has to be scared he is being taken away by social services. They have done a c-peptide test, which has shown nothing.Any help would be appreciated.

Jane
Click to expand...
Does your son have any other symptoms......... feeling sick losing weight feeling dizzy when he stands up is he tired does he want to sleep all day?
If you have reduced his insulin by massive amounts and he is still going hypo then suggest he is tested for Addison's disease.
Are you 100% sure your son is not taking extra insulin so he can eat loads of sweets? Some youngsters learn to do this as a means of attention and or because they so want to be like their friends and eat loads of sweets.
 
Hello and thank you for any replies,
We are carb counting. Everything is weighed and we are doing our best. Changing insulin doses often and this is where it gets a tad interesting, last year he was on 32 units of levimere at night, this has been reduced to 16 lately. therein lies the problem he gets slowly up to 26 and this is where the hypos are occurring, clearly something is happening, but no they haven't done any of the other tests just straight on to Münchhausen, or fabricated illness as it is now known, nothing in between , which is why I am on here asking for suggestions. He was supposed to be going onto a pump, which i was glad of because we wouldnt have to do anymore levimere, therefore i cant be getting to him, but they have cancellled it all down to this. I cant win.
 
istari said:
Hello
I am completely new to this site. My son was diagnosed with type one at 6 years old. Lately he has been suffering a lot of hypos, to cut a long story short the doctor thinks that I am causing this. I am not. Does anyone know of a reason this could be happening, he is 13 , no one else in the family suffers with this condition. It appears not only does he have to put up with diabetes, he now has to be scared he is being taken away by social services. They have done a c-peptide test, which has shown nothing.Any help would be appreciated.

Jane
Click to expand...
Hi Jane, so sorry to hear of your distress regarding your son, you both shouldn't be going through this, as you son is clarly worried
. I don't understand why a doctor would think you are causing the hypo's, he is 13, a teenager, after all and may eat more at school, sweets, junk food and take Insulin for it. Maybe have a friendly chat with him, or see your DSN asap. He could also have an undiagnosed medical condition. Fingers crossed you can find some answers soon.
All the best RRB.
 
Engineer88 said:
@istari could you give us a log of a couple of days blood sugar readings with times?
Click to expand...
Whilst it is true I could,it wouldn't do any good as at the moment he is only on 22 units of levimere and is running high,my problem seems to be, the nurses keep putting it up untill we hit the number 26 and then the troubles start
many thanks
jane
 
@istari
Get yr son to be admitted into hospital for a week and get the d consultant and dsn to monitor yr sons bg levels and
find the right basal doseage with the right bolus dose and correction factor. Basal bolus is hard work for most people leading to all manor of problems
 
Have you tried splitting his Levemir dose? That would give you more control possibly as you could adjust each dose separately.
 
istari said:
Hello
I am completely new to this site. My son was diagnosed with type one at 6 years old. Lately he has been suffering a lot of hypos, to cut a long story short the doctor thinks that I am causing this. I am not. Does anyone know of a reason this could be happening, he is 13 , no one else in the family suffers with this condition. It appears not only does he have to put up with diabetes, he now has to be scared he is being taken away by social services. They have done a c-peptide test, which has shown nothing.Any help would be appreciated.

Jane
Click to expand...
That's interesting - I had the same issue years ago - I was diagnosed at 4 and when I was 5 I started getting a lot of hypos - this was back in the 1960s - one shot a day - Beef and Pork Insulin - Lente - my parents were new at managing their sons diabetes. They were of course just besides themselves with worry.

This apparently is not uncommon. My parents were told sometimes the Pancreas can temporarily start producing insulin again. After a month of several hypos things went back to normal as I guess my immune system took care of the rest of my insulin producing cells. - anyway that was back in 1966 - it's now 2016 - still alive, no complications.
 
Had a similar thing and realised my daughters pen was faulty . It was not clicking properly - after a bit of digging found it had suffered an accident on school trip. All resolved with a new pen x
 
istari said:
Hello and thank you for any replies,
We are carb counting. Everything is weighed and we are doing our best. Changing insulin doses often and this is where it gets a tad interesting, last year he was on 32 units of levimere at night, this has been reduced to 16 lately. therein lies the problem he gets slowly up to 26 and this is where the hypos are occurring, clearly something is happening, but no they haven't done any of the other tests just straight on to Münchhausen, or fabricated illness as it is now known, nothing in between , which is why I am on here asking for suggestions. He was supposed to be going onto a pump, which i was glad of because we wouldnt have to do anymore levimere, therefore i cant be getting to him, but they have cancellled it all down to this. I cant win.
Click to expand...

Hi,

Is your son administering his own insulin??
 
@istari I'm so sorry to read about this - it sounds awful - sending a hug. I hope you'll get to the bottom of it very soon.

There could be a number of reasons for your son's hypos - and I'm not saying that what happened to me is what's happening to your son, but this is my own story about unexplained hypos. I'm sharing it here because of what @CarbsRok and @Robinredbreast have said above about the possibility of him taking extra insulin for snacks that you're not aware of.

I was diagnosed aged 11, and my paediatrician said to me, very sternly, 18 months later 'these numbers are too high'. In those days I was on fixed amounts of insulin and fixed amounts and timings of meals and snacks. There was no flexibility in dose adjusting. I was not allowed to change anything. But I was in trouble because my numbers were too high.

So what was I to do about it? I knew that insulin counteracted higher blood sugars. So I started sneakily injecting extra insulin - it was really really difficult to not be noticed - I became a master (mistress!) of the distraction technique.

I was waking up with a massive, massive hypo every morning. My parents were beside themselves. It was really scary. This went on for weeks.

I wanted to make my numbers 'better'.
I wanted to be right.
I wanted to conform.

Looking back, I'm horrified that this happened. It was made to happen by outside sources - by that I mean I felt I HAD to do this secret thing, not that it was a decision that I made for myself.

Since then I have felt very, very strongly about the language used by healthcare professionals - the influence of words, just words, can rock a small (and not only small) person's whole existence.

Hope your son's hypos abate soon, @istari , and I hope that they will reconsider him for a pump given the potential for his long-acting to be the reason.

Hang on in there.

Love Snapsy

:)
 
I happen to really his age and this last summer I've had many hypos

These hypos were largely because I wasn't eating lunch, is he eating all his meals and snacks?
 
How awful for you!

Is he giving himself injections? Do you oversee him? I'm also wondering if he's taking more insulin than you know about.
 
Hi,

I'd say split the Levemir too.

Who is making the Munchausen accusation? Is is a GP or a consultant? If it is a GP change the GP. I think that that is outrageous. The only time I've had uncontrolled hypos was when I was a teenager; hormonal changes really messed with my diabetes. You've also said that the nurse is putting up your son's Levemir and then hypos are occurring and you are being blamed? It would seem a clear causation between the nurse's suggested dosages and the hypos.

If you can afford to get a FreeStyle Libre set you could use that for a couple of weeks to monitor/fine tune your boy's blood sugars.

This is hard enough as it is without being accused of causing the problems in the first place!

Kind regards

Dillinger
 
thanks to everyone who has replied to my somewhat desperate post. Haven`t answered lately as we have been hospitalized again. This time they have done more tests, it looks like addison`s disease. Don`t know if that makes me feel better or worse to be honest, but at least I am not insane. My love to each and everyone of you, jane
 
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