Would you book a holiday knowing your child may well be t1 by the time it comes round?

[Robinredbreast]

https://kidshealth.org/en/parents/munchausen.html

https://www.sciencedirect.com/topics/neuroscience/munchausen-syndrome-by-proxy

Extreme - but real.

 

[ExtremelyW0rried]

I have a granddaughter and she was diagnosed with type 1 at 2 1/2 years, she was very ill. The symptoms come on quiet quickly, it is not a long duration. I can understand parents, I am one myself, so worrying over a young child when they become ill is perfectly normal, but thinking or making up possible medical conditions is so worrying, harmful and not normal. I had my daughter at 42 1/2 with type 1 and she is 17 now and starting an apprentice job today, she is healthy and happy. What you are doing is wrong and could be a cause of authorities getting involved.
Help is needed asap !

Wrong because I might not take her to Disneyland?
She is a bright and happy toddler who is extremely sociable and meeting and surpassing all her milestones.

 

[Robinredbreast]

Wrong because I might not take her to Disneyland?
She is a bright and happy toddler who is extremely sociable and meeting and surpassing all her milestones.

Your post's are a worry and a concern.

 

[Rokaab]

She is a bright and happy toddler who is extremely sociable and meeting and surpassing all her milestones.

So treat her like a normal toddler.
Do not treat her like a T1, do not treat her like someone who is going to become a T1, it may never happen.

 

[tim2000s]

Children diagnosed before the age of 4 often suffer low level brain damage because of hypos and how they affect the developing brain. Once older the brain is less susceptible apparantly. They are more likely to have no hypo awareness.

Really, where have you found that? I can't find any studies or evidence of this anywhere, so I'd hope this isn't hearsay that you are basing presumptions off. I'd agree that younger kids tend not to have a huge amount of hypo awareness, but equally, in most it does arrive around puberty.

We've had this conversation with you before though. The key to living with Diabetes is not living in a "What if.." world of made up maybes. It's about living in the now. Just because you have diabetes and your children may have a slightly higher likelihood doesn't mean they will get it or that they'll get it in the next 2, 5, 10 or 17 years. And once they do, do you think your Daughter will thank you for making her be schooled at home, being the weird odd one with no friends who can't participate in any of the fun things that kids do (which aren't all food oriented)? Sorry if you think I'm being blunt.

You are heading in the wrong direction with this. You really need to get help for your issues and stop reflecting them onto your daughter, who right now, doesn't have Type 1 Diabetes. And as far as you know, doesn't have antibodies either. Please seek psychological help - for both your and your children's benefit.

 

[donnellysdogs]

Once there have been abnormal blood sugars - and 8s and 9s ARE abnormal - it's usually less than two years to diagnosis. According to trial net anyway. When they pick up antibody positive people once they get abnormal OGTT then they usually develop frank diabetes in less than two years so I think it's unlikely to be another nine years, although of course I can't know for sure.

I would be very hesitant to take a t1 child abroad, particularly a very little one. Stuff that could go wrong is too long to list.

Do not live life according to statistics of what may be!!

Your child is normal.... and well and parents do worry but this statstic monitoring and projecting of T1 is not healthy..

My hubby got given statistics by a top, top cardiloigist... they were totally wrong..

So please do yourself and your family a favour, live.....you cannot predict the future...

If you do persist in projecting illness and restrictions on your child you are more likey to come in to question by your own doctor and indeed social services as they may wish to check that you are not displaying signs of Munchausen (can't spell it)....

You may well have concerns but you need to let go of "what ifs" and grab some thinking of "lets do".....

Yes, you can think of the worst scenario,..yep, insurance claim for holiday... or you can think of the best scenario of a wonderful, wonderful holiday with your family... and many, many parents do not let their children know they are going to Disney... as its a fabulous surprise for them...

Please, finally.. please treat your child as a normal child. Predictions and statistics are not exact..

 

[donnellysdogs]

Serious and worrying. This child hasn’t got diabetes. This obsession with what may or may not happen has me concerned for the child’s mental health. Or is that just me?

Its not just you, I am concerned too for welfare of a child having a parent projecting illness according to statistics .

 

[Deleted member 308541]

Yeah, but that Megaslude takes a lot of climbing (hypo risk)

Pretty sure there was not a Mega Slide at Brighton the last time I was there in 1976, just two piers and a Volks train and whelk stalls.

Mmmm! Whelks my favourite...

 

[donnellysdogs]

In all likelihood we would stay home a LOT until she was older and I would probably home school... Everything is a risk assessment when t1 is involved.

This is very, very extreme and worrying thoughts here.

Home school??? For a T1??? This is extreme thinking...

You would be placing your child under a restrictive lifestyle aand schooling because of T1????

Seriously please speak to a professional about your fears and rationale around T1.

 

[Brunneria]

T1 unfortunately DOES stop you doing everything normal children do.

This is factually incorrect.
Please stop spreading such misinformation on the forum.

The son of a very good friend of mine was diagnosed type 1 as an infant.
His parents were understandably concerned, but made a determined effort to avoid treating him as 'an invalid'
(remember, the word stems from being in-valid).
His school career was that of a healthy, active, sporting little boy, encouraged to have the same level of activity and independence as his two non-diabetic brothers.
He played football and rugby for the school, and cricket for the local team.
He learned to coach, and had holiday and weekend jobs.
He went on abroad with his school friends (no parents in sight) to celebrate the end of his school exams.
He got better grades than his two brothers (so his intellectual growth wasn't stunted)
He is 6 foot 2 and the tallest in the family (so his growth certainly wasn't stunted)
He spent 3 months working as a carer in an American summer camp for kids with disabilities.
He played for the university rugby and football teams
He has recently finished teacher training and is now a PE teacher, including football rugby after school coaching.

Throughout it all, he has taken his T1 seriously without letting it rule him.

A huge part of his success has been the parental support he has received - because they refused to let him miss out on life, and fostered that attitude in him.

 

[ExtremelyW0rried]

This is factually incorrect.
Please stop spreading such misinformation on the forum.

The son of a very good friend of mine was diagnosed type 1 as an infant.
His parents were understandably concerned, but made a determined effort to avoid treating him as 'an invalid'
(remember, the word stems from being in-valid).
His school career was that of a healthy, active, sporting little boy, encouraged to have the same level of activity and independence as his two non-diabetic brothers.
He played football and rugby for the school, and cricket for the local team.
He learned to coach, and had holiday and weekend jobs.
He went on abroad with his school friends (no parents in sight) to celebrate the end of his school exams.
He got better grades than his two brothers (so his intellectual growth wasn't stunted)
He is 6 foot 2 and the tallest in the family (so his growth certainly wasn't stunted)
He spent 3 months working in an American summer camp for kids with disabilities.
He played for the university rugby and football teams
He has recently finished teacher training and is now a PE teacher, including football rugby after school coaching.

Throughout it all, he has taken his T1 seriously without letting it rule him.

I just have no idea how.
Maybe mine has been more brittle than other people's... certainly hormones affect my control hugely.
My parents would not have had me if they'd known I would be t1. They have told me.

 

[Sue192]

This is very, very extreme and worrying thoughts here.

Home school??? For a T1??? This is extreme thinking...

You would be placing your child under a restrictive lifestyle aand schooling because of T1????

Seriously please speak to a professional about your fears and rationale around T1.

And the child does not have T1.....

 

[Mike d]

Enough people have said it and not one dissenting voice in the group ... that should send a clear message.

 

[zand]

I just have no idea how.
Maybe mine has been more brittle than other people's... certainly hormones affect my control hugely.
My parents would not have had me if they'd known I would be t1. They have told me.

What a horrid, disgusting thing to say to you! The rejection you must have felt from this is immense. No wonder you have problems now Please get help. You need to stop the vicious circle right now. You are not your parents and you mustn't become like them. You were not in-valid and neither is your daughter. You are both very valid and both of you have a right to a happy normal life. T1 won't stop that, but these psychological issues will. Don't let them. Don't let your parents' attitude spoil your life with your children. Life is precious. grab it and teach your children how to do the same.

Please, please get help right now. Start with your new life today and things will get easier.

 

[lucylocket61]

He agrees that given the family history and given that we've seen 8s and 9s it is quite likely at some point that she will develop t1.

why are you not also concerned that your son will develop it? he is older, isnt he? I assume you have also been testing him and checking that his bloods are normal?

 

[lucylocket61]

Once there have been abnormal blood sugars - and 8s and 9s ARE abnormal - it's usually less than two years to diagnosis. According to trial net anyway. When they pick up antibody positive people once they get abnormal OGTT then they usually develop frank diabetes in less than two years so I think it's unlikely to be another nine years, although of course I can't know for sure.

I would be very hesitant to take a t1 child abroad, particularly a very little one. Stuff that could go wrong is too long to list.

You do realise that other countries also have good health care systems and medical people either on site or withing a few mins reach?

 

[lucylocket61]

Or it highlights that you ARENT like all the other kids who can eat what they want in this magical place and not worry about numbers.

what makes you think there wont be other children there, who may have other issues or also be type 1?

 

[lucylocket61]

No but she wouldn't be able to have certain things perhaps and she might feel ill if she did and then had high sugars afterwards.
It's hard enough to manage even in a routine but it's virtually impossible when out of one.
That's my experience anyway.

that is two year old life though. Them wanting to do stuff and eat stuff and play with stuff and having to be taught not to do them. And then throwing a tantrum, and then learning that life has limits and consequences. Its normal and every kid has to go through this. The limits they have to learn may very, but they all have to learn limits.

 

[ExtremelyW0rried]

why are you not also concerned that your son will develop it? he is older, isnt he? I assume you have also been testing him and checking that his bloods are normal?

No, he's never shown any symptoms (such as drinking 40oz plus water in two hours which was what originally made me concerned. Literally drinking and then asking for more and then drinking - I originally checked her urine which was positive for glucose at that point and that was why I checked her blood sugar)

 

[ExtremelyW0rried]

Also - incidentally - the path to t1 diabetes is not fast. Trialnet show three stages and the second stage - abnormal blood glucose plus antibodies - can last years. Usually less than two years before the presence of frank diabetes but not always.

And I haven't been checking my daughter's bloods. Should she start drinking gallons again I will take her to the GP and they can check her.