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Discussion in 'Parents' started by Administrator, Sep 26, 2008.
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Hi my names Suzi and i'm the mother of a 9year old type 1 diabetic son who also has Coliac Disease. For those unaware what Coliac Disease is, its an intolerance to gluten found in wheat, rye, barley and oats. Think of all your carbs at meal/snack time that help you manage your diabetic conrol and take away bread, pasta, biscuits, gravy mixes, some brands of crisps,wafers, cones ect. And welcome to our world! its not all doom and gloom, there are now some really good ,tasty alternatives out there amongst all the card board tasting ones!
Anyway i'd love to hear from anyone really, i've helped Andrew manage his diabetes since 2/2/06, he is now giving himself (so very proud of him) 3 injections a day, blood sugars not great at the minute, but just increased his insulins again, so fingers crossed.
He takes 30units Insumane 15 combi, 4-9units humalog and 9units Lantus daily. Hes my little champ, don't think i could manage so well. This week he had real issues with injecting, does it in his tummy, hates doing thighs as his thin, but i know how important it is to alternate injection sights, any where else suitable?
Love to hear from anyone whos been there done that, or has some really good gluten free /low sugar recipes. SUZI xoxo
I highly recommend switching the type of insulin. I became diabetic at the age of 13 and I was taking daily injections, once in the morning and once in the evening. This insulin was called humulin m3 and was a mixture of both the background insulin and the instant insulin needed to digest food. I found myself unconscience with low blood sugars a little too frequently and after about 2 years of being in and out of hospital someone told me about another type of insulin which suits younger people and their lifestyles. With humulin m3, which was a mixture of both insulins, I had to eat constantly throughout the day which I wasn't very good at and found myself either not eating enough and having low blood sugars or eating sweet foods and having high blood sugars. Naturally this made me very ill, however when I changed my type of insulin I found it much easier to manage. I now take two different types of insulin seperately, I can also wake up at whatever time I like. The main insulin is called novorapid and works instantly, I take this everytime I eat whenever I want to eat. The amount I take depends on the carbohydrate content in the food (sugar included) which means I can eat anything I want like anybody else. The other insulin I take is called levemir and this is the background insulin which everyone needs whether they eat or not, I take this on the evening once a day. I hope this information is helpful and i really do recommend this insulin as it's helped me live like a normal person. I can now wake up whenever I want, eat whatever I want whenever I want, all I have to do when I eat is take the correct amount of insulin according to the carbohydrate content of the food. For every 10g of carbohydrates I have to take 1 unit of insulin, for instance, if a meal contains 40g of carbohydrate then I will take 4 units of insulin. At first you have to take your blood sugars before and after eating because everybody is different and some people may need more or less insulin than others but it's certainly alot easier to manage than the other insulin. Good luck x
Can i ask up to how many times a day you have to inject? Were finding the humalog fast acting great after meals as we can inject to what he has eaten, the Lantus at night is good too as bs are always good first thing, only draw back is waiting half an hour to eat, though we don't always go by the rules! Biggest gripe is the Insumane 15 combi as hypos occur around pre break at school no matter what breakfast was. I have heard of Levimar and i know of one child on it. Our biggest problem is getting certain insulins, i had to beg! for insumane after his mixtard 20 went of the market and dispite 2 changes including frightening experiences with humalog30 and mixtard 25 we settled virginally well on the insumane 15 combi. But there is room for improvement, and i'm open to all ideas and advise,
thanks for taking the time to advise, very much appreciated.
Hi, just joined the forum.
I am a Dad with a 4 and half year old daughter with type 1, Cerebral Palsy and wife with a needle phobia that she is overcoming which makes me very proud, life not easy!!!!!
We started in Dec 2007 when diagnosed on Mixtartd 30, I think that was the name from memory. This was a morning and night injection with novarapid for top ups when required. Never got good control as we were always feeding the insulin. Changed in may to Levemir at bedtime and then carb couting with novarapid, huge change life is much better and daughter much happier as meal times are more relaxed. This also means the odd treat can be controlled with the novarapid so she doesn't feel left out.
Hope I can help on the forum as always happy to answer any question with our experiences.
I have just found and joined the forum and am amazed at the amount of advice and guidance that is given here.
I am the mum of a 9 year old Type 1 diabetic - Katie. She was diagnosed on 02.11.2008 - almost the 1 year anniversary - but still feel very new to it. It came as a huge shock when Katie was diagnosed and there is just so much to learn. Katie tests 4 times a day and injects twice. Her hba1c, over the year has been : 12, 11.5, 11.4, 10.9 and then last week was up to 12.2 ! I am really very surprised at these high results and am worried that they are like this. Her BS readings are often high - she is rarely below 10 and often in the mid to high 20's. Reading the postings on here I realised that the majority of people are well below 10 most of the time. The consultant and nurse do not seem particularly worried though. I gather they still consider her to still be "newly diagnosed" so bound to be unsteady. They do tweak her insulin here and there but I am now thinking perhaps I am right to be worried.
Any ideas please ?
I am no Doctor or professional but I would be concerned if my daughter was still getting those readings regularly. She was diagnosed Dec 2007 and we had very little control to start with as we were on the two injections a day with Novarapid to use when high. The hospital started us on this and we were just feeding the insulin the whole time and I did not know there was any other way. We were also getting very high readings and then very low, lots of swinging. We went on a Diabetes weekend organised by Diabetes UK and from the information we were given we elected to change to the Multi Daily Injections which means calculating the carbs. On this weekend there were lots of Diabetics to discuss our problems with and help with the decision also there was a Doctor there who was Diabetic. Since changing and it hasn't been that easy we have much better control, latest HB1AC 8.1. However this week we have been getting average readings of 6 which I don't think we would have achieved on the old regime.
Hi jimmyd and Georgina,
have read with great interest threads on insulin, as i've wrote before Andrews on insumane combi 15, humalog and lantus. Was a period where bg was well controlled, past few weeks theyv'e been all over the place. Morning readings average 11, tea time 25 (way too high and bed not bad at 8. hes experienced a roller coaster of an emotional week, his poor cat was knocked down on Mon, fudge didn't survive, heartbroken, and hypos all over the place.( though emotionally feeling better as a new kitten on its way ready just after his birthday on 2/11). Today sent home @ 11am from school bgs 28.9!!!! just given humalog. Think its time for a change in insulin and regimes, not due to see hospital til 4/11. Anything i can change in meantime, increasing insulins so far haven't worked, now on total 41 long acting and average 6 fast acting. I was told that by weight ( honeymoon period well passed) 1unit for every kg, Andrew is 38kg/4ft 10 and as skinny as a rake. Beginning to think Insumane completely wrong for him, and loathe to increase again as hypos often hit pre breaktime @ 10am. Appreciate any advise
Ps for any parent .Andrew (like the queen) has 2 birthday celebratory meals, 1 on his birthday 2/11 and the other when he was diagnosed T1 2/2. To congratulate him on coping so well with his condition.
Sorry have not used the insulin types you use. My daughter had raised blood sugars which I put down do a persistent cold and we upped her Levemir by 1 unit, I wanted half but Dr's said 1, and we had much better results but increased hypo's so I have just reduced it by half last night due to an unexplained 1.5!!!, and lots of just under 4 readings, bit to low. The Levemir really seems to suit her well and I just need more confidence it changing the dose when required. I was told the same ratio 1 unit for each KG. Have you changed the insulin, assume you use a vial in a pen, a problem with the vial??Just a thought. Have you tried bringing forward the appointment? When I wanted to change from Mixtard to the MDI I telephoned on the Monday and they saw me that Wednesday and changed over that day.
Anyway the point I am trying to make!!! is that changing the insulin has made a huge difference to us, so may be worth a try?
Many thanks jimmyd.
Intend phoning dn tomorrow for her to pop out and look at Andrews readings, i'm sure he needs insulin changing again!. Today upped insumane (only goes up in 2's) to the result of 3 hypos so far today, ever feel you can't win?! he's on the pen injections, 2 of which are disposable, always checked and are used well within 30 day period. Ever get the feeling you can't do right for doing wrong! He wasn't pleased at either getting an extra injection yesterday to bring him down or an increase this morning. Knowing a change of insulin is on the cards i'm defianately not going to be his favourite this week!
Hope things are still settled with you and your little un.
Know how you feel readings of 10 and above now!!! Just had a 16.7 as she has returned from walking!!!! I am going to put the dose up again and figure a way of reducing the Novarapid after food to reduce the hypo's!!!!!
Well heres a good one for you, remembering Andrews nearly 10, i give him a little freedom. Went to youth club on Friday night, trusting him, warning him no sweets! unless hypo. Came home reading high!!!! swore he never ate or drank anything, found empty packet of skittles in his jeans pocket next morning when putting them in wash, little s*d. Not the worst crime in the world, and its only natural now and again there gonna break the rules, but i had a restless night wondering why he had been so high and double checking the ingrediants i'd used for the dinner that night.
Well if you change he could have the sweets and then inject the novarapid to take account, but still as a treat I would say. My daughter loves ice cream so during the summer....well the warm day we had!!!..she could have some and I would work out the required novarapid and she was more than happy with the extra injection!!!! Does help at home as the info is on the pack, much harder when out!!!
Had DN out today (Andrew sent home sick, sub teacher couldn't handle 2 hypos!) anyway we're gonna change injection sites completely for a week to see if theres any change. Andrew was starting to get a back log in his tummy! obvious to me now, must of had brain freeze over the weekend :lol: Plus think he's coming down with something. Thanks for all the advise, also DN is going to arrange a carb counting class, so when i'm well educated in the carb area, will consider 4 injections a day, i know it makes sense.
I am new to this site and just wanted to say hello to everyone especially Suzi as my son has coeliac and type 1 and so far I have not come across anyone else with a child with both conditions. It's just comforting to know that someone else understands what dealing with both things is like.
Callum was diagnosed with diabetes in December 2005 and then with coeliac in the following March. He is 15 now and has always done his own injections since day one, and hasn't had any issues as such doing the injections. I am beginning to realise how fortunate I am with this! He is on multiple injections a day according to what he eats (carbohydrate counting) which on the whole works very well for him.
He takes novarapid with his meals and glargine at night time. For his age and size I think he his probably on only a relatively small amount of insulin as he is quite a big chap, just over 6ft. For him he feels that having Coeliac is more of an infringement on his life than the diabetes is. Not being able to go into town with his mates and eat what they eat etc he finds really frustrating and annoying. At home we have learnt to deal with the restrictions of Coeliac very well but going to parties, out for dinner and even sleep overs at friends is not impossible but not plain sailing to organise.
I think the impact on his life from Callum's point of view having both conditions, being able to more or less eat what he wants from the diabetes perspective by carbohydrate counting has lessened the impact of the coeliac, so instead of facing restrictions on both counts,it's just the gluten issue.
I have loads more I could say but I won't rabbit on too much on my first posting.
Hi Calmanda a very big hello,
I got very emotional just then finding another parent with a child with both T1 and coeliac disease, not many out there to chat to. I totally agree, coeliac is a far more restricting condition. So far spent a fortune on different types of flours to make cakes/batter ect. resulting in creations that even the ducks at the local park won't eat, but they make Andrew laugh, especially when dropped they either crack a floor tile or bounce out the kitchen window :lol:
So if you have a good batter recipe i'd sell my soul for it (well almost) like you have a thousand and one questions and ideas/topics to chat about. I'll let you start and a very big welcome to the forum
hows your little un? Andrew finally changed insulins but still adjusting and fine tunning it all! Now on Lantus at bed time 20u as a background and humalog with meals. 1st few days nightmare found it hard as it took 6 injections that day to get him under control, plus he seemed to experience withdrawal like symptoms form his insumane. Hes not a happy bunny at present, heading to hospital on tuesday for a carb counting course (kinda think we put the horse before the cart) but we did it all on the advise of our consultant!
Well done, the first few days we changed were a nightmare, I spent one night up taking readings every hour through the night as the readings were HIGH on the machine!!! Took most of the night to get down below 20mmol. Has been hard since trying to find out the carb in each meal but once you have notes it becomes easy to check each time you have the same food. The last couple of weeks her readings have become really good 4-7 but getting more hypo's than normal but getting those sort of readings gives us real hope for getting this under control. Nearly a year now since diagnosis and I am hoping the next HB1AC will be one we can celebrate!!! The machine shows a 30 day av of 6.9mmol....so here's hoping!!! Would never have got this with the 2 a day injections.
Hope the carb course goes well, please ask if there is anything I can answer as we seem to have covered most foods in the search for sensible readings.
Hope all goes well with the HB1AC, Andrew last 1 was down from 8.3 to 8.1, going to get it back down to 6.4 like when he was 1st diagnosed. Your nearing your 1st anniversary, well done, time to celebrate, we always do. Its a way of congratulating the whole family on another year, for parents the child and any siblings. We're 3yrs on 2/2 and have to admit this last year has been the biggest rollercoaster of them all.
Managing to get the BS good in morning around 6 which is fantastic, lunch still in 13's and teatime 18's, bedtime nailed at 10, think the lantus is running out at teatime so know i need to increase ,as humalog increase has incurred hypos. Think i know what i'm doing:lol: I'm the kinda person who often takes the p**s out of ones self, it keeps me going.
Anyway we're all getting where we need to be, we all need a big pat on the back and for those still struggling a big pat of encouragement