Following on From Nathan's 22.8

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sasha1

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Hi All...

Sorry to have to bring this up again....cant seem to find the thread I started on this.....I really do think its my age....lol😱

Well after Nathan's 22.8 BG at 2am the other morning....I have now with some more adjustments to his insulin...mainly the lantus...the past 2 mornings he has woke up at...4.8 and 4.6 this morning...which I was really pleased with as last night before bed he was reading 17.4 ....aaaarrrggghh ...the dreaded pizza..well I didnt want to adjust that with N/R even though he was having a slice of toast for supper...I thought I would see how he panned out...I am reluctant to give N/R at night as his Lantus drops him really quick over the night...Any way I decided to wake him at 1am..to test and he was 10.4..So I am glad I trusted my instinct not to correct with N/R.

But what has bothered me most over the past couple of days..is Nathan's reaction and comments at having this high reading and a couple of days after.. considerably higher readings than he is used to....Nathan is worried that...A...It will affect his HB, next time...and that the consultant will not be pleased....B..Complications will set in...C...Because I said to Nathan we would probably have to increase his insulin..to control the BG and growth hormone counter action...Nathan replied so I will put more weight on, and then the consultant will have a go me for that as well.

When we have seen the consultant...not the dsn's...it has always been a negative experience for Nathan and myself...No matter how hard Nathan or I try it is never enough...I was having a conversation on the phone the other night with Bev..about this...It has got me thinking more..and I think I will start or ask to be refered to another consultant..I have voiced my concerns several times to the consultant, over various issues...but I think it is time Nathan had a change of approach regarding his treatment of diabetes,

Heidi
x🙂
 
sasha1 said:
Hi All...

Sorry to have to bring this up again....cant seem to find the thread I started on this.....I really do think its my age....lol😱

Well after Nathan's 22.8 BG at 2am the other morning....I have now with some more adjustments to his insulin...mainly the lantus...the past 2 mornings he has woke up at...4.8 and 4.6 this morning...which I was really pleased with as last night before bed he was reading 17.4 ....aaaarrrggghh ...the dreaded pizza..well I didnt want to adjust that with N/R even though he was having a slice of toast for supper...I thought I would see how he panned out...I am reluctant to give N/R at night as his Lantus drops him really quick over the night...Any way I decided to wake him at 1am..to test and he was 10.4..So I am glad I trusted my instinct not to correct with N/R.

But what has bothered me most over the past couple of days..is Nathan's reaction and comments at having this high reading and a couple of days after.. considerably higher readings than he is used to....Nathan is worried that...A...It will affect his HB, next time...and that the consultant will not be pleased....B..Complications will set in...C...Because I said to Nathan we would probably have to increase his insulin..to control the BG and growth hormone counter action...Nathan replied so I will put more weight on, and then the consultant will have a go me for that as well.

When we have seen the consultant...not the dsn's...it has always been a negative experience for Nathan and myself...No matter how hard Nathan or I try it is never enough...I was having a conversation on the phone the other night with Bev..about this...It has got me thinking more..and I think I will start or ask to be refered to another consultant..I have voiced my concerns several times to the consultant, over various issues...but I think it is time Nathan had a change of approach regarding his treatment of diabetes,

Heidi
x🙂
Click to expand...

Damn that has me very cross and angry 😡 (my cross face)

A. buggar the consultant ('scuse the langauge - my grandma used it all the time 🙂 You nor Nathan are there to please the consultant. I would suggest that neither of you take anything he says personally (I know that is hard to do). You have to remember that unless he is a type 1 himself he only knows text book, you are living the reality. So listen to what he says, if you agree or like any of it, then take that bit on board, and the rest just ignore and throw away !!! (easier said that done but I'll like him to live with it for a while)

B. The odd high over a few days will not give Nathan complications. All diabetics have highs. It is when it is constantly high for a long time that there will be complications. You will always have highs and lows especially as a child and teenager, you can just do your best and I know its hard work but boy are you working hard. You really are, both of you. For Nathan to actually react is great, it means he understands and wants better which is brilliant.

C. Again buggar the consultant. Not everyone puts on weight with insulin. I know that it seems to be that people do but as a young man like Nathan is I would imagine he would be active and energetic etc so keep in the back of your mind (Nathan as well) but he shouldn't worry about that just yet. Think of a retort if the consultant says something. Make it a good one and get Nathan to practice it, not rude just clever or intelligent, so if the consultant says it, then Nathan will be well rehearsed and his reply. That might stop him dead.

I tell you these flippin' consultants think parents a really quite dim and that we believe every word they say and think they are gods, well they haven't really got to know the parents of today have they then.

Yes I agree, go and find a hospital near you better. I have a list of hospitals who do different things, it is pretty much up to date. If you let me know where you are then I might have an idea of hospitals for you. I might not but you never know.
 
I can't add to what has already been said, but some consultants are obnoxious and thinks no one knows as much as they do. I hope his car breaks down and the garage mechanic is as disgusting to him as he is to you!
 
Caroline said:
I can't add to what has already been said, but some consultants are obnoxious and thinks no one knows as much as they do. I hope his car breaks down and the garage mechanic is as disgusting to him as he is to you!
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Love it ! !!!!!
 
OOH IT MAKES ME SO CROSS!!!! I too had years as a kid of being told I was a "bad diabetic" for not testing enough, not miraculously being perfectly controlled etc (hence twitchy, med professionals still scare me!) - so right on Adrienne, BUGGER THE IDIOT! Do they have any idea of the stress they cause?!! Grrr!! 😡 You just start to switch off & give up which is so not the way to go! Nathan needs encouragement not grief!!

When I first moved to this area, I was seen at the local hospital by a consultant who made me feel like he didn't really have an interest in my care & I was again a "bad diabetic"...I met a really good consultant from another hospital on my DAFNE course, turned out he takes care of ladies planning for pregnancy so I said I wanted to have a kid & got my care transfered to him...he's a star & things have improved greatly. I realise it might look a bit fishy if Nathan tries that line :D , but don't feel afraid to ask to change consultants - this guys sounds like an arse & this is too important not to sort out! All the best!!
 
Hi Heidi,
You know my feelings on this! The levels are just an indication that something needs to be done differently - NOT that either you or Nathan are failures! Diabetes teams are there to support you - NOT to make you feel guilty for getting it 'wrong'! Anybody trying to manage diabetes will tell you how many variables come into play in any one day - then add to that the fact that Nathan is a child who is growing and needs extra nourishment - and the picture changes dramatically.
A diabetes team is there to SUPPORT you, and if you dont feel supported, then it may be time to go somewhere else. Nathan deserves good quality service, and so do you. If i were in your shoes - i wouldnt hesitate. Especially now Nathan has started to show interest in pumps!:DBev x
 
Can only second everything said here...grumble grumble...makes me cross... HONESTLY! I personally think you are *incredibly* efficient and good and conscientious at dealing with all this -- your guy clearly knows NOTHING about how things are...

Ergh. Change. Keep your chin up. And Nathan's. So hard on him, trying so hard...

Ergh.
 
Can only second what everyone else has said! Grrrrrrrrrr!

Let us know how things develop. 🙂 xx 🙂
 
Hi All,

THANK YOU all so much for your replies...I agree with you all on all levels.

I am going to phone Nathan's DSN first thing in the morning..for a referal to a new consultant...one that will support and understand Nathan 110%...

I have had my doubts for many months....dreading every clinic appointment...wondering what we both have done wrong this time.

At every appointment he ask's when did we change Nathan to Lantus...err hello you have the notes in front of you.....It was at my request that Nathan try a different basal...after I refused to up his levemir any more than 70 units..(split doses of 35)....they were happy for nathan to take up to 90....Not a chance in my book.

They also had Nathan on the wrong size needles...again when I challenged this...they played daft and said well he should be on the next size up and thought he was..

The consultant also thinks there is no problem with Nathan when he does have hypo warning signs not picking up on them till below 3...I have a major issue with this..

When I asked for indications as to why Nathan is sufferring terrible amounts of hypo's..It was put down to a phenomenon or I was doing things differently...6 times I told the consultant that I was'nt....each time he replied with you must be.

With regards to Nathan's weight..yes he is a little on the chunky side..but always has been...he is also growing etc...food wise the consultant says...a growing boy will eat all the time if they could..it is down to me to stop him....and make the correct food choices......err thats what I constantly do...

He asked Nathan why he did'nt look happy the last time we went...Nathan replied its because I'm here and I dont want to be..

Since diagnosis Nathan's HB has never been over 7.6.....the last two have been 6.8...surley that is good control etc....in a teenager, who does'nt carb count or is on a pump????

Heidi
xx🙂
 
Whenever I went to see the consultant they always asked me things in a round about way of sort of saying 'are you really sure you're not stuffin your face with chocolates and cakes!" i used to hate it and when I got an appointment I would already be on the defensive! the thing is, because these people have 'studied' the condition they think that they know it all! I feel like saying to them that they really haven't got a clue, every diabetic is not textbook, I certainly am not! It really bugs me!!!!😡

They are lucky, they haven't got to live with it for the rest of their life!!!! They should listen more than they preach!!! At the end of the day they only know what they know from reading books!

Sorry for the rant guys!

Lesley x
 
lesley1978 said:
Whenever I went to see the consultant they always asked me things in a round about way of sort of saying 'are you really sure you're not stuffin your face with chocolates and cakes!" i used to hate it and when I got an appointment I would already be on the defensive! the thing is, because these people have 'studied' the condition they think that they know it all! I feel like saying to them that they really haven't got a clue, every diabetic is not textbook, I certainly am not! It really bugs me!!!!😡

They are lucky, they haven't got to live with it for the rest of their life!!!! They should listen more than they preach!!! At the end of the day they only know what they know from reading books!

Sorry for the rant guys!

Lesley x
Click to expand...

Hi Lesley..

Hey thats no rant hun.......I know exactly where you coming from here..🙂
Yes you are completely right the Doctors etc..study straight form a text book in black and white...But diabetes is'nt black and white...It's a very individual condition with many variables and scenarios. Nathan to has become very defensive with them..I cant say I blame him at all..

I think it is about time that all Drs treating diabetes must nave the condition...sorry...Then they might just be able to understand and relate to the condition in which they treat.

Heidi
x🙂
 
sasha1 said:
I think it is about time that all Drs treating diabetes must nave the condition...sorry...Then they might just be able to understand and relate to the condition in which they treat.

Heidi
x🙂
Click to expand...

I absolutley completely agree. It is the only way they will understand it! When I was pregnant I was seeing the consultants I one of them actually had diabetes and she was fantastic! I don't wish it on anyone but if you're gonna preach then at least live what you preach!

x
 
Hi again!

I think Nathan's HbA1c's are fab!! Wish mine had been that good at that age! You're both obviously doing a great job, so well done!!

My current consultant said to me that I (as in me, Twitchy, hurrah!) am the expert with 30 years experience, he can only provide advice & guidance, but I'm the person who knows my body & can deal with it. When I see him it really is a consultation, he'll offer ideas but won't impose them. Sometimes it's a case of agreeing to try something for a while & back to the drawing board if it doesn't work. So there are good consultants out there! 🙂

Apparently your GP should have a list of different diabetic consultants?? Worth asking around especially if there is a local support group for your area in case someone else can point you in the direction of a consultant who isn't a total oxygen thief!!! 😛
 
sasha1 said:
Hi All,

THANK YOU all so much for your replies...I agree with you all on all levels.

I am going to phone Nathan's DSN first thing in the morning..for a referal to a new consultant...one that will support and understand Nathan 110%...

I have had my doubts for many months....dreading every clinic appointment...wondering what we both have done wrong this time.

At every appointment he ask's when did we change Nathan to Lantus...err hello you have the notes in front of you.....It was at my request that Nathan try a different basal...after I refused to up his levemir any more than 70 units..(split doses of 35)....they were happy for nathan to take up to 90....Not a chance in my book.

They also had Nathan on the wrong size needles...again when I challenged this...they played daft and said well he should be on the next size up and thought he was..

The consultant also thinks there is no problem with Nathan when he does have hypo warning signs not picking up on them till below 3...I have a major issue with this..

When I asked for indications as to why Nathan is sufferring terrible amounts of hypo's..It was put down to a phenomenon or I was doing things differently...6 times I told the consultant that I was'nt....each time he replied with you must be.

With regards to Nathan's weight..yes he is a little on the chunky side..but always has been...he is also growing etc...food wise the consultant says...a growing boy will eat all the time if they could..it is down to me to stop him....and make the correct food choices......err thats what I constantly do...

He asked Nathan why he did'nt look happy the last time we went...Nathan replied its because I'm here and I dont want to be..

Since diagnosis Nathan's HB has never been over 7.6.....the last two have been 6.8...surley that is good control etc....in a teenager, who does'nt carb count or is on a pump????

Heidi
xx🙂
Click to expand...

If the hospital won't refer you on, then your GP can. You do not have to go through the hospital at all if you don't want to. I have friends whose GP just referred them out of area to wherever they wanted to. I have a template letter that I wrote and a couple of friends have used it as their GP's originally said no, they soon changed their minds. Let me know if you want a copy.

6.8 % is a great HbA1c but you have said that Nathan has lots of hypos and hypers and this could reflect why the result if 6.8. Some teams (the bad ones) won't tell you this and just palm you off with a 'that's a brilliant result nothing needs changing' when you know clearly it does !!!

Let us know how things go. 🙂
 
I hope you get on well with the DSN and can see another consultant. I remember I hated going to clinic when I was a teenager and was always worried about my weight. My consultant always used to say I shouldn't put on any weight and if I had then I was scared to go. I wasn't even ever overweight from my memory, maybe on the top end of normal, but I was a very active kid.

I now go out of area to see my consultant, when I moved around I've always stayed with the same hospital. I like my DSN and consultant and they have a specialist MODY clinic so i feel I get the best care so don't want to go to my local hospital.

nathan deserves the best care and shouldn't dread going to clinic so hope he can get a new consultant
 
sofaraway said:
I hope you get on well with the DSN and can see another consultant. I remember I hated going to clinic when I was a teenager and was always worried about my weight. My consultant always used to say I shouldn't put on any weight and if I had then I was scared to go. I wasn't even ever overweight from my memory, maybe on the top end of normal, but I was a very active kid.

I now go out of area to see my consultant, when I moved around I've always stayed with the same hospital. I like my DSN and consultant and they have a specialist MODY clinic so i feel I get the best care so don't want to go to my local hospital.

nathan deserves the best care and shouldn't dread going to clinic so hope he can get a new consultant
Click to expand...


Hi Nikki

Absolutely Nathan deserves the best care available..as all diabetics should...Every time Nathan has been to the clinic, I can see his confidence drop even further, He hates going and dreads it..I am going to phone Nathans DSN later and hopefully she will refer him to someone else..if for any reason she cannot or wont..I am going to make an appointment at the Dr's and get him to refer Nathan.

As Nathan is 14...would it be possible for him to see the adult consultant...having spoke to adult diabetics..the fed back from them has been more than positive...by all accounts the consultant is wonderful and goes out of her way to help, support her patients

Heidi
x🙂
 
probably depends on the hospital, but I know that at my local one (not where I attend) adult department takes from age 14 in the teens clinic and they also have a young adult clinic. But they stay under the peads DSN. So maybe your area does the same.
Let us know what the DSN says
 
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