Low or high but no medium!!!!!

[Semarroy]

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?!!!!

 

[novorapidboi26]

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.....

 

[Semarroy]

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.

 

[novorapidboi26]

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....

 

[MeanMom]

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 😉

 

[sue63]

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

 

[Semarroy]

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!

 

[Monica]

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.🙂

 

[Semarroy]

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

 

[Northerner]

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 🙂

 

[Willowz]

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.

 

[bev]

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

 

[gewatts]

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

 

[Ruth Goode]

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

 

[Semarroy]

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

 

[bev]

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

 

[Semarroy]

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.

 

[Phil65]

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!

 

[Semarroy]

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.

 

[bev]

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