# Low or high but no medium!!!!!



## Semarroy (Nov 15, 2010)

My son (9 years) was diagnosed type 1 about 6 weeks ago. After a week or mourning (no other way to describe it) we pulled ourselves up and are getting through it all and coping with the changes to our lives. But he has now entered the honeymoon period and we are finding he is either really low and having daily hypos or really high (18 this morning). I am in constant contact with hospital and following instructions to the letter, but I guess I just need some reassurance that this will settle at some point and we will get more stable readings?!!!!


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## novorapidboi26 (Nov 15, 2010)

It will settle eventually, some people can have short honeymoon periods and others much longer.........just try and keep a good routine, minimise the carb intake to levels that suit and stick at it, you can only do your best.......

You will have all the support you need from us.....


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## Semarroy (Nov 15, 2010)

Thank you for taking the time to reply. At the moment we are not carb counting as he is on twice daily humalog and we are following a strict diet and snack regime, which actually suits us quite well and isn't a huge change for us. I have been told as he gets older he'll switch to the multiple shots or pump. I just hope that his numbers settle as it's a constant worry. I sat in the garden upon his diagnosis, thinking the world had caved in and I was going to lose my beautiful little boy, then I looked at a huge old tree and thought that George will be the same - the tree stands through all the seasons, howling wind, torrential rain, heat etc - but as it's roots are strong, it survives year in, year out. So my boy is the tree, and we are going to make sure he is educated and knows how to manage his diabetes so that as he grows up, he can take what life throws at him and thrive.


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## novorapidboi26 (Nov 15, 2010)

Thats exactly right, behind every diabetic child is there strong parents.....

Theres so much more information and support nowadays you wont have to look hard for the aswers you need...

As he is on 2 a day its just a case of making sure you try and eat the same things/amounts each day...............its not the best regime but certainly good to break you in with........routine is the key......I love that word....

I am sure there will be more parents along to share thier stories and knowledge soon....


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## MeanMom (Nov 15, 2010)

Semarroy said:


> Thank you for taking the time to reply. At the moment we are not carb counting as he is on twice daily humalog and we are following a strict diet and snack regime, which actually suits us quite well and isn't a huge change for us. I have been told as he gets older he'll switch to the multiple shots or pump. I just hope that his numbers settle as it's a constant worry. I sat in the garden upon his diagnosis, thinking the world had caved in and I was going to lose my beautiful little boy, then I looked at a huge old tree and thought that George will be the same - the tree stands through all the seasons, howling wind, torrential rain, heat etc - but as it's roots are strong, it survives year in, year out. So my boy is the tree, and we are going to make sure he is educated and knows how to manage his diabetes so that as he grows up, he can take what life throws at him and thrive.



Thats a wonderful way to look at it and your son is very lucky to have a Mum like you.

I'm quite new to this too, but my daughter has always been on Multiple doses and we started to carb count very early on too. I would recommend it, but if I have learnt anything these last 8 months is that everyones Diabetes is different so you have to do what works for you. Dont worry too much about those numbers at the start, just get yourselves confortable with the new lifestyle/routine. You will get lots of help, advice and most important, support, on here. 
And (whisper) 18 isnt THAT high as long you dont make a habit of it


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## sue63 (Nov 15, 2010)

Hi 

Know exactly how you feel, it's such a shock at first and really hard.  I am 6 months in to this with my son and it is a lot better.  Take care of youself and you are doing great x


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## Semarroy (Nov 15, 2010)

Thanks so much  I do wonder if I am giving myself too hard a time trying to get the perfect 4-8 mmols. Maybe it's just not that realistic at the moment as we don't know how much his pancreas is giving out during this honeymoon phase - maybe I need to stop beating myself up and as long as he's not having daily hypos and or have ketones... I guess we just keep going and hope it settles soon. Today he was 20 odd this morning, then down to 5 at lunch and then 19 at dinner. It's just all over the place!


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## Monica (Nov 15, 2010)

Semarroy said:


> Thanks so much  I do wonder if I am giving myself too hard a time trying to get the perfect 4-8 mmols. Maybe it's just not that realistic at the moment as we don't know how much his pancreas is giving out during this honeymoon phase - maybe I need to stop beating myself up and as long as he's not having daily hypos and or have ketones... I guess we just keep going and hope it settles soon. Today he was 20 odd this morning, then down to 5 at lunch and then 19 at dinner. It's just all over the place!



Please don't give yourself a hard time. It is very difficult to get the perfect levels at best of times, and it's much harder when in the honeymoon phase. Just keep doing the best you can. And as you say: as long he's not hypoing every day or have ketones.

And as you've already realised, If you have any questions, we'll try our best to answer them. No questions are too silly.


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## Semarroy (Nov 15, 2010)

Wow! So glad I found you lot! I feel so much better now. Maybe I'll even get a few hours sleep tonight


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## Northerner (Nov 15, 2010)

Hi Rachel, welcome to the forum  You'll get all the help and support you need here - we have some wonderful, knowledgeable parents who really understand! You might be interested in joining http://www.childrenwithdiabetesuk.org/ which operates an email list for questions - a lot of our members are members there too. Also, I'd recommend getting a copy of  Type 1 Diabetes in Children, Adolescents and Young Adults by Ragnar Hanas. It's an excellent reference for everything Type 1


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## Willowz (Nov 15, 2010)

I think I'm having the same issues as you. There just seems to be no middle ground. Lots of hypos, so we lowered the doses - now her sugars have shot back up again! We just can't win. 

My daughter has been diagnosed about 4/5 weeks. But people keep telling me it does get easier. I really hope things get better for you soon.


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## bev (Nov 15, 2010)

Semarroy said:


> Wow! So glad I found you lot! I feel so much better now. Maybe I'll even get a few hours sleep tonight



Hello and welcome to the forum - although sorry you have to be here.

My son is 12 and was diagnosed 2 years ago so I *know* what you are going through - but I absolutely promise you that life will get better - not the same as it was before - its just different - but still as wonderful and your tree will still grow.

I am on the 'childrenwithdiabetes' website (as Northerner mentioned) and there are 400 families on there with a type 1 diabetic child - it is a great place and we have all met up and spent a weekend altogether. We are planning another one next May in the Cotswolds  - if you want to join us you would need to register on the site and you will need to book in the next couple of weeks as it is very popular. I went last year and the year before after my son had been diagnosed for 6 months and it was the best decision I ever made. It is very informal and its just parents who have a good old chat and the children get to meet lots of new friends who all sit and test and treat hypo's without batting an eye - because they are in the majority as we take over the place.

Dont worry if you find all this overwhelming - you wouldnt be normal if you didnt - there will be lots of ups and downs in the early days and then once you are used to things you become skilled at trying to avoid the ups and downs and life does settle. To be honest , mixed insulins are quite hard to get right, so the sooner your little boy moves onto MDI and carb counting the better. My son is now on a pump and has much better control and his hba1c is now good.Bev


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## gewatts (Nov 15, 2010)

Welcome to the forum - it took me years to find it after my daughter was dxd - I so wish I had found it earlier!  When my daughter was dxd 4 1/2 years ago, she was put on 2 injections a day. We were not taught how to carb count. She stayed on this regime for nearly 4 years and was constanly going from high to low. It was a nightmare. At Easter she finally moved to MDI and carb counting. Once we got the hang of carb counting then it became clear that life for Katie is much easier now. The levels are not perfect but much better than before. We are hoping to get her a pump sometime soon.  Ask any question on here, no matter now small it may seem.  I am also part of the CWD email group - it is great!  xxx


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## Ruth Goode (Nov 16, 2010)

Welcome to the forum, I understand how you feel - Carly was dx last June and her level was up and down for the first 3 months she was on 2 insulins a day, now she is on 4 a day and carb counting her level is more settled but with more hypos! 
It's been nearly 6 months for us now, Carly is looking more healthly, more bouncing  and for me I have became her full time carer and its all now became a routine, there are some ups and downs but with her gorgeous smiles and hugs make it all good again and again 
Good luck, keep thinking positive x


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## Semarroy (Nov 19, 2010)

Thanks for all your messages. George is now hovering around 13mmols and hasn't had a hypo for days. I went to a lecture at The Royal Institution of Great Britain on Wednesday called 'Diabetes: Blood Sugar & Tears' by Prof Stephanie Amiel and Prof Michael Walker. It was very interesting and the recent discoveries made can certainly give us more solid hope for a better way of not only treating diabetes, but also a cure. I think we can 'watch this space' and even though it may not be in the next few years, I am confident it will happen in our young ones lifetime  I was also told not to worry so much about 10+ numbers, as long as no ketones and not loads of hypos - we are doing okay. xx


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## bev (Nov 19, 2010)

Semarroy said:


> Thanks for all your messages. George is now hovering around 13mmols and hasn't had a hypo for days. I went to a lecture at The Royal Institution of Great Britain on Wednesday called 'Diabetes: Blood Sugar & Tears' by Prof Stephanie Amiel and Prof Michael Walker. It was very interesting and the recent discoveries made can certainly give us more solid hope for a better way of not only treating diabetes, but also a cure. I think we can 'watch this space' and even though it may not be in the next few years, I am confident it will happen in our young ones lifetime  I was also told not to worry so much about 10+ numbers, as long as no ketones and not loads of hypos - we are doing okay. xx





Sounds like an interesting lecture - I dont think I have heard of this particular group.

I am a bit puzzled why you were told not to worry about levels over 10 though...Bev


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## Semarroy (Nov 19, 2010)

Because George is still only 5 weeks into diagnosis and in the honeymoon period, they assured me that no long term damage would happen if we were over 10mmols for a short while, just until it settles. They said honeymoon is like being in 1st gear, stops and starts and chunting along, very difficult to adjust insulin as it all changes daily.


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## Phil65 (Nov 19, 2010)

Semarroy said:


> Because George is still only 5 weeks into diagnosis and in the honeymoon period, they assured me that no long term damage would happen if we were over 10mmols for a short while, just until it settles. They said honeymoon is like being in 1st gear, stops and starts and chunting along, very difficult to adjust insulin as it all changes daily.



I am so thankful that my children do not have diabetes, it is hard enough as an adult to get it right....or try to! What with growth spurts, adolescence, hormones all over the place etc,etc, You parents of diabetic children, I applaud!!  I believe that you have to have a positive outlook, diabetes is a hindrance to me but not the end of the world.  Manage it properly and it will become second nature.  I have to say that 2 injections never did work for me, moving to four injections a day will give you so much more flexibility and much better control, but please try carb counting, once you have your carb/insulin ratio correct and have identified GIs it is fairly easy.  I so wish someone told me about carb counting 14 years ago!!!  Good luck!


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## Semarroy (Nov 19, 2010)

Hi, yes I have been reading up about the new Dafne programme and have only heard positive comments about it. It is really the way to go for the best management of diabetes, but only for 18+ years. I believe we will go onto the 4 a day and carb counting at some point but at the moment, with George being 9 years, and not doing his only insulin shots yet (he does do his own blood testing tho) then we are going to be with twice daily for a while.


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## bev (Nov 19, 2010)

Semarroy said:


> Because George is still only 5 weeks into diagnosis and in the honeymoon period, they assured me that no long term damage would happen if we were over 10mmols for a short while, just until it settles. They said honeymoon is like being in 1st gear, stops and starts and chunting along, very difficult to adjust insulin as it all changes daily.



Oh that makes more sense to me now - sorry I had lost track of when the diagnosis was made. Yes, it is tricky in the honeymoon period and you have been advised correctly. I had assumed you meant that if any levels were over 10 then not to worry - and thought you were further down the line than this.Bev


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## Semarroy (Nov 19, 2010)

Ah, no problem. I know our ultimate goal is 4-8  I have been trying for this perfection now and getting overly worried about the long term affects of him being 10+ so they were reassuring me I guess. 

Out of interest, I'd be very interested in hearing from anyone reading this post what the average mmol readings that their children get on average each day?


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## bev (Nov 19, 2010)

Semarroy said:


> Ah, no problem. I know our ultimate goal is 4-8  I have been trying for this perfection now and getting overly worried about the long term affects of him being 10+ so they were reassuring me I guess.
> 
> Out of interest, I'd be very interested in hearing from anyone reading this post what the average mmol readings that their children get on average each day?



Well - there is no easy answer to that I'm afraid - some days we have lovely levels between 4 and 7 all day - other days we can be in the teens - but there is always a reason for it - the 'trick' is working out what it is....but this comes with practice and you will find your own answers as to why levels are high or low as each child is different. My son is 12 and uses a pump now and his hba1c is 7% - he used to be 9.6% on MDI - so we have much better control - he has been diagnosed for 2 years and has been on a pump for just over a year and we/he loves it much more than injections.Bev


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## gewatts (Nov 20, 2010)

I don't think we have many days when all of her readings are in range - I cheer when they are though!! Most of the time when they are high or low I can see why (eg, ill or too much exercise). Now she is on MDI her readings are much nearer to in range than on 2 mixed injections. Things are getting better - she's been on MDI for about 6 months and I am learning to tweak her insulin to get better BG levels. It takes practice and a lot of trial and error tweaking!  I wouldn't worry about going on a DAFNE course when you are ready to go on to MDI. Carb counting sounds much harder than it really is. There are loads of good books about : http://www.amazon.co.uk/Carbs-Cals-...3028/ref=sr_1_1?ie=UTF8&qid=1290257617&sr=8-1 
http://www.amazon.co.uk/Collins-Gem...=sr_1_1?s=books&ie=UTF8&qid=1290257754&sr=1-1

We also use the Salter 1400 nutritional scales which have lots of foods programmed into it.

Before Katie moved to 4 a day, she moved to 3 a day so that she didn't have to inject at school - this was better than 2 a day but not as good as 4 a day - that might be worth thinking about until he is happy to do his own injections.

Gabi x


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## Semarroy (Nov 20, 2010)

The 3 a day might be a good idea - thanks for that. I will run it past our diabetic nurse. He is much better from 4pm - till morning. It seems to be the day time that things can go so up and down. But we can pretty much identify why things happen. He only had 1 hypo last week, and that was at 2pm because he hadn't eaten enough at lunch. So it's just a matter of keeping on educating him. It's good to know that it's not just George that can't stay in the 4-8 every day! I was thinking it was just us!


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## Ruth Goode (Nov 21, 2010)

When Carly was dx, the doctor said in children anything between 4 - 10 is good until she is more settled then between 4 - 7 is good


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