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is it just me???

A

ams162

Well-Known Member
Messages
572
Location
devon
Type of diabetes
Type 1
Hello all, i wanted to pop on and just have a quick chat, i have an 8 year old son who has diabetes and was diagnosed at 4 after the first year i was told he also has coeliac showing in his blood so had to go in for a camera to be put down his throat, the results came back and they have told us he has latent coeliac which means he could develop full blown coeliac at anytime in his life more added worry. Anyway i find having a child with diabetes a daily struggle from getting bloods right to getting people to understand the complications it can cause if signs arnt looked for etc in school, we have never had a hba1c test in the normal range usually falling in at around 9 or 10 just wondered if anyone else finds things a struggle or is it just me lol. Be nice to talk to some other parents
 
hi there, you are not alone! it is a struggle and can be **** hard work at times! I am type 1 and a mother (daughter isn't diabetic though) so I can relate to everything you have said, but in reverse (if that makes sense!) Lots of Mum's on here with type 1 children so no doubt they will be along in a minute to offer advice :D you don't mention your sons insulin/dosage? does he carb count? does he inject himself/test himself etc yet? Bottom line, it is a lot of work to keep blood at an 'acceptable' level but it is possible :D I'm not sure what affect being Coeliac will have on his BG (my daughter has a friend who is Coeliac so I know a bit about it) but I'm sure your DN will be able to help??
 
Hiya thanx for ur reply, he has just been changed in the last few months to levemir and nova rapid hes having 8u of levimir and then 7,5 and 5 of rapid, he has just started injecting himself with the help of a pen mate which makes me so proud of him for doing it when i think back to the first injections i had to do on him and him begging me not to do it never thought we would get to this point. I did think after 4 years of trying different insulins we would be abit more stable with the blood levels but we dont seem to be any nearer to good control, with changing his insulin to the above and 4 injections daily the nurses have suggested a carb counting course soon once we have gotten his doses right, so fingers crossed we will start getting there soon feels like we have tried so many diff insulins cant be far off finding the right one for him
 
well done to your son for injecting on his own! that is quite an achievement at this age :D I wonder if it's not the insulin but the wrong dosage? the carb counting course will change your life, I am sure of it, I actually don't know how I managed until I did mine?! Try and get on the course as soon as you can, your son will reap the benefits as he will be able to be more flexible with his food choices (unless he's a fussy eater like my daughter!) and at the same time, he will be able to keep his BG levels under control as he will be adjusting dosage for every meal time, rather than sticking to 7,5 and 5. How long ago was his diagnosis?
 
he was 4 well nearly 5 when he was diagnosed but we never realised and we nearly lost him after i took him to hosp really concerned they sent us home saying he was just dehydrated and gave us dyralyte to give him he ended up in a coma and being rushed to hospital in an ambulance, lucky for us they realised straight away what was wrong and got him out of it after a few days in a high dependancy unit. anyway he has managed his injections now which is great its just persuading him to try new sites he likes to stick to the same places which we try to discourage as much as possible. i am so proud of him for how he copes with it all its alot to deal with as an adult let alone being 8 years old
 
heavens, can't believe the hospital sent him home like that! poor chap :( can only imagine what that must have been like for him and you.....it is a lot for him to deal with so kudos to him for being able to inject by himself, I'm sure he'll realise that by doing it himself it will hurt less too! He must rotate sites though, very important as I'm sure you know...
 
Hi, my daughter is 8 and she was diagnosed at 4. We also tried different insulins as control was tricky to start with. We're on Levemir and Novorapid now and that is working quite well for us, although we do still have days where we seem to lose steady control and have a wobble. But mostly we seem to be doing okay.

If you don't carbohydrate count then getting accurate dosage according to what is eaten must be very difficult. Have you tried doing a few fasting tests at various times of the day and night to make sure that his Levemir is correct? If his Levemir is incorrect it can affect his control and make things difficult for you. When Levemir (of basal) dose is correct then working out the bolus (Novorapid) is much easier and you'll get more consistent readings. If you haven't already read this book (Type 1 Diabetes in Children, Adolescents and Young Adults: How to Become an Expert on Your Own Diabetes) then I recommend you get a copy and read through it. It was a very useful tool in getting my daughter's readings under control.

Before going onto the Levemir/Novorapid regime we used Novomix 30 and also tried the Mixtards - our HbA1C's were mixed, ranging from between 7s to 8s but with lots of hypos. Since changing to Levemir and Novorapid and counting carbohydrates we've had one HbA1c with a result of 7.7 but during this time Jess has swine flu, our next one is due in April and we're hoping or expecting a better result.

Well done to your son for learning to do his own injection. My daughter only recently started doing her own injections so I know what a big achievement that is.
 
thanx for ur replies guys i will have a look for the books u have recommended i havent read much to be honest only what i was given from the nurses it does feel a daily battle at the moment, ive just been to work (which is at his school) and hes complaining hes feeling unwell i tested him and he was just reading hi very frustrating as was 12 this morning and gave 8 units of rapid to compensate but then get in and hes through the roof very disheartning sometimes i have to say
 
hi again, 8 units of Novorapid is a large correction dose, if he is still going high then you should probably be looking at his Levemir, have you tried splitting the dosage? Read the books people have already suggested and call your DN for advise on correcting the high if it keeps going up. Check again in an hour or so, Novorapid should be peaking by then so BG should be dropping......he might need a snack too!!
 
hiya 8 units wasnt the correction hun he usually has 7 anyway i added a unit to bring down some of it but dont like to go too mad as school dont really have a clue what is happening when he goes low its all such a worry i tested him again when i left and hes gone down to 27 instead of just reading hi and ive told him to drink plenty this afternoon, i have spoke to his nurse this morn and she wants to move his levemir to the morn instead of the evening to help and then adjust from there his appetite is huge at the moment too which isnt helping things hes always hungry but she thinks hes on a growth spurt but if not they need to do more tests as he has latent coeliac and it could be that starting to show up added complications i know. we will get there im sure just really hard work sometimes its nice to talk to others in the same boat
 
phew! I've over corrected myself before so it makes me nervous :lol: sounds like you need to get yourself a Ketone meter (ask your DN) so you can keep an eye on those 'HI' levels. 27 is majorly high (as I'm sure you know) so if your son is producing Ketones too that can be dangerous. Water is good, but correction doses are also needed. Good news about the Levemir, hope the change helps :)
 
yeah i gave him some extra rapid at lunch too hun im trying my hardest going to ask again about a carbohydrate counting course to give me a better understanding of it all which should help, i do have a ketones meter here and do test for them so dont worry hun on that front also got the sticks for testing urine too so all covered there lol
 
Hi, No it's not just you! Looking after a diabetic child can be a challenge at times, but as so many of the other posts have mentioned, by learning to carb count it does make the management easier and will hoepfully give you less volatile readings.

I have 3 children, 2 of which have type 1. I have to keep a food diary for both of them and this enables me to work out insulin doses. Carb counting is not an exact science and I often get readings that are unexplainable, but by knowing what insulin to give depending on what consumed is a big advantage in managing this condition and will give you better control which in turn will mean you won't be worring so much about his readings.

Soon after my kids were diagnosed I was getting fed up of people not really understanding their condition and it would upset me when people asked me lots of questions (even though they meant well). In the end I drafted a document which basically outlines their condition, treatment and info about hypo's. Now i simply hand this out to any parent who is interested and to those who are having my kids to play.

I think it's great that your son is doing his own injections. It always amazes me what our kids can do and it just goes to prove what little STARS they really are. Good luck
 
goodness 2 children with diabetes must be really hard i struggle with one, i think im going to insist on this course as everyone seems to think that it helps a lot and will give me a better understanding too where as at the moment everything seems to be more luck than judgement, i find school very hard as sometimes they look at u like what are u worrying about hes fine but if they saw a hypo i think they would be more worried about things
 
you mentioned that your son complained of feeling un well and you checked his BG and he was high - the school need to know that highs are not good, just like lows! Education is key, can you talk to someone there one to one? the books already recommended are all excellent 'tools' (I personally have 'think like a pancreas' and it's a enlightening read, not just a load of data which weighs you down!)

anyway, good luck with it all, keep at it and insist on that carb counting course!! :D
 
No, it isn't just you! I have just caught Khaleb's Cold so we are both a bit worse for wear at the moment.

We go through stages where all is well and then struggle at other times. Overall the levels are under control and hba1c in range but it isn't easy. I've never been on a carb counting course (not something offered here) but I do count them myself (but not exactly). Khaleb gets about 1 unit insulin/kilo body weight. Keeping meals small and spaced out through the day keeps levels a lot more even. Khaleb really has 6 meals a day (3 large and 3 small).

Anyway, it's hard to find that middle ground to have a normal childhood and good control. Sometimes the balance is a little off.
 
thanku all so much for ur advice i have ordered the book u suggested and have asked about the course which we are booked onto for may which is the next available one so hopefully onwards and upwards, well i mean downwards with his sugars lol thanks again im so glad ive discovered this very useful forum
 
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