[rhianna]

hi dresden ,

My dd is younger so I hvae encountered this yet , are you pumping or MDI ?? , I have a friend who goes through this with her dd , alot I could ask her to pm you , she is on this site Michelle, also I would be in almost daily contact with your endo's to keep it at least out of hospital.

Does your son realise the damage he is doing ?? is he going thought diabetes burnout , has your team referred him to the social worker , most kids need to go to the social worker from much younger.

Can you speak to his friends and ask them to help , another friend di that had a d party with her daughter friends to help them understand what she went through what needed to be done and why it was so important , becuase she wasn't bolusing at High school she' 16.

Are you in any other groups ?

Bb
Rhianna

[kickoponomusinsi...]

Hi Rhianna,

My son is almost 18. We've been asking about a pump for a few years but the general consensus amongst the professionals is that he's not ready for one and until he's prepared to make the effort, it will end in disaster.

Currently he's on insulin pens. Novorapid and levimir in the AM. Novo at lunch ( hit and miss as to whether he will take it or not, even with teachers harrassing him about it) Novo and Levemir in the PM.

He often refuses to test his sugars as well unless I toss the firebreathing dragon impersonation.

Friends, he doesn't really have any. He left school, got an apprenticeship, left that, went back to school, got another apprenticeship, quit, and is again, back at school. (he's now in an adult campus based schooling system)

I'm at a loss for what to do. We've shown him elderly diabetic people with limb amputations, told him he's at risk of blindness etc, it just doesn't seem to matter, he thinks he's invincible.

Thanks for the reply, I have to duck out for a while, but I will be back later and stalking this thread to see if anyone has ideas. thanks so much.

[bekhenry]

No Rhianna, i do not have a child with T1. I cant imagine what it must be like, but it dosnt explain why there is such anger and abuse at information that might help your child. I have not and will not push anyone into alternative therapies but why the abuse at providing the information?
As i have said if you are not interested that is entirely your choice.

I myself suffer a chronic condition that mainstream medicine has not been able to help with. I am always looking at EVERY avenue to find something that will help. So I just don't understand why there is such utter contempt towards something that has already shown such success.

Bek

Bek , do you have a child with type 1 diabetes ?

[MyAlCoLoMa]

Hi Dresden,
I'm Michelle. My daughter will be 18 in august (dxd at age 9.5), and is going through the things you describe about your son. Although, I have to admit, shes starting to get a little better now (by her standards, so not the average t1d....hba1c it's still over 10). The past 2-3 years have been absolutely horrendous! She doesn't use her pump to its full potential, rarely tests bgl's - when she does, they're always high, dozens of dka's (she doesn't get low ketones....jumps right up to the 5s or 6s straight away...highest was 7.1). Etc, etc.

Depression, self-harming, anxiety, ocd, anger, violence..you name it, we've had it. It's called teenage diabetic rebellion. They just simply don't want diabetes to exist and be part of their life....so by not testing / eating unbolussed food / not giving insulin etc, they feel they are in control of diabetes (i guess, like how an anorexic person would feel in control of food by not eating iykwim?) Not sure if that makes sense? If they don't have that constant reminder (ie, bgl meter, insulin) in front of them, they can essentially "forget" about diabetes. :/ it's sad, I hate seeing my daughter have so much hate for something.

I dont know what advice I can give, other than to say I know what you're going through, and I'm here if you want to vent. Although, I'm more often on facebook instead...i think it's been a couple of years since I've come in here, lol. Just popped in again because Rhee asked me to see your post. If you're on facebook, look up our eb page and add yourself.


And Bek......you might be copping some anger because we have seen this sort of "miracle cure" a million times before over the years. A lot of people might think they are "helping" us.....but they dont think about the damage it could potentially do! Not only by a) getting our hopes up only to be shattered yet again for the millionth time. You can only take so much....I'm at the point, after 8+ years living with it, that I can't even look at articles claiming of an imminent cure. I've heard it all before, and yet, my child is still stuck with this awful freaking disease.
But also b)...it HAS happened before where people BELIEVE some of the crazy "pray for a miracle cure" or "honey cure" or "moss cure" or whatever the "flavour if the month cure" someone can make up.....and have taken their child off of insulin. It doesn't take a genius to imagine what the fate of those poor children were. May they RIP . So, yes, you may be thinking you are helping us, or giving us hope......but until that trial is authenticated and proven to be a 100% successful cure, please think about who you are sprouting it to.

[MyAlCoLoMa]

Ohh dresden...just saw you are from adelaide? Me too!

[Fiestycat]

Dresden, sorry to hear that you are having these issues. I have no advice as my DD is still in primary school. I hope that you are able to get through to your son soon, for everyones sake. Is your state Diabetes Australia or JDRF branches proactive in helping teenagers or your hospital, do they have a social work section that you could have a chat to so as to be able to get some ideas to help.

Bek, thank you for your information, I am sorry but until there is written articles in creditable medical journals showing the success of the program you are promoting then I am not interested. I never want to hold my DD again while a medical team fight to keep her alive as her sugars are bottoming out. As I said previously, many of us have faced the death of our child and have been able to keep them alive. Unfortunately, even in this country, there are deaths every year of children and teenagers who have Type 1 Diabetes and none of us want our children or our friends children to be part of those statistics. These deaths are caused by sugar levels that are either too high or too low. There are some risks that are worth taking but there are also those risks that have disasterous consequences and within the T1D community there is the evidence of damage to our childrens health from sugars that are too high for too long from a very young age. If your friend has discovered a cure and cured these other T1D people then she needs to get the word out there by talking to JDRF and Diabetes Australia about her methods and seeing what they think. Death is too high of a price for too many Type 1 Diabetics because of insuiln mistakes.

[bekhenry]

Thank you for your replies. I think i have a better understanding at why my post has upset and angered a few. Again that was never my intent.

I can understand why most of you are not interested until the results are written up and are all over the medical journals. Unfortunately these things take time and i guess i do get upset when i see the incredible results that are being obtained yet they can only help a few atm.

I wont bother this group again but i would like to add that with this treatment nobody is just taken off insulin. You only start reducing the insulin as your body no longer requires it. It is not a substitute for insulin.

Again i apologise if i upset or offended anyone.

All the best.

Bek

Dresden, sorry to hear that you are having these issues. I have no advice as my DD is still in primary school. I hope that you are able to get through to your son soon, for everyones sake. Is your state Diabetes Australia or JDRF branches proactive in helping teenagers or your hospital, do they have a social work section that you could have a chat to so as to be able to get some ideas to help.

Bek, thank you for your information, I am sorry but until there is written articles in creditable medical journals showing the success of the program you are promoting then I am not interested. I never want to hold my DD again while a medical team fight to keep her alive as her sugars are bottoming out. As I said previously, many of us have faced the death of our child and have been able to keep them alive. Unfortunately, even in this country, there are deaths every year of children and teenagers who have Type 1 Diabetes and none of us want our children or our friends children to be part of those statistics. These deaths are caused by sugar levels that are either too high or too low. There are some risks that are worth taking but there are also those risks that have disasterous consequences and within the T1D community there is the evidence of damage to our childrens health from sugars that are too high for too long from a very young age. If your friend has discovered a cure and cured these other T1D people then she needs to get the word out there by talking to JDRF and Diabetes Australia about her methods and seeing what they think. Death is too high of a price for too many Type 1 Diabetics because of insuiln mistakes.

[Fiestycat]

Hi

Just wondering how everyone is going?

[type1diabetes]

Hi Everyone

Just thought I would bring to your attention a news article on the FRONT Page of The Herald Sun which has one of our Members Katrina with 4 year old Sarah.

Please feel free to follow the link on her amazing journey and look at what our little princess has been up to lately.

http://www.heraldsun.com.au/news/sarah-inn...o-1226660971832

This post has been edited by type1diabetes: 10/06/2013, 08:38 PM