Diabetes - DS has just been diagnosed ...

[Millie1]

Am hoping that parents of diabetic children will be able to give me lots of advice and words of wisdom on how to move forward. DS was diagnosed last week and is still in hospital being stablised - DH with him tonight - we're hoping he'll get home tomorrow. Still trying to get our heads around it and get used to the idea. It will mean some changes to our diet and the way we do things but nothing too radical, I hope. Healthier! I'd love advice about altering recipes, suggestions for snacks (after 5 days in hospital he won't even look at a digestive biscuit or toast!) and just any hints/tips I may find useful.

Thanks!

Calidrau - don't worry - I was working night shift. Just had a quiet spell and logged on. Am now going to bed

Hi Millie,

I went to bed last night and realised that I hadn't asked how you were doing.

My DS has always been a good eater fortunately. I put that down to DH being a SAHD for the first year and a bit and on a mission to produce a child who would eat anything (DH himself being a product of DMIL's cooking ).

Will he have juice or a cup of milk as part of his breakfast? A cup of tea with a bit of sugar? What about boiled eggs and soldiers? For lunch, would he have something like pasta salad instead of sandwiches? My DS sometimes took a little box of pasta instead of a sandwich, as he also has coeliac and gluten free bread isn't that nice. Or crackers and a bit of cheese or ham? I can imagine how frustrating it must be for you.

Remember that every food item eventually gets broken down into glucose by the body. Low GI carbs are better than high GI (so for instance shreddies are preferable to rice crispies). An apple, a mini mars bar, a roast potato and a spoon of sugar all have about the same amount of carb in them and it's a matter of choosing which option to have. The benefit of basal/bolus or pumping is that you get your background insulin through the long acting injection or pump, and you then bolus as you eat. With mixed insulins (even the ones you mix yourself, as we used to) you are feeding the insulin as you go along.

I know I have suggested this before, but do think about joining the CWD email group. There are lots of people with little children on there who will have better ideas than I do.

I was tidying up today and found an old (from last year) 8 page pull out from the Times on diabetes which someone sent me. It might be useful for some of the recently diagnosed families - please let me know if you'd like me to pop it in the post. It's quite high level, but fairly informative.

Thanks Tangarine! He's a problem! Thanks for all your suggestions - and for the explanation of food/glucose/insulin! You have added problems with your son having coeliac. I'll have to come up with some new ideas - and have another go at getting him to eat things like eggs/pasta (he'll only have that in a sauce!) etc. Honestly, he's just got so fussy and is also winding us up like you wouldn't believe. Oh well, it could be worse

I'll have another look at the CWD website, to be honest, it's the thought of having dozens of e-mails in my inbox each day which I find a bit off-putting although I have no doubt that there would be lots of information and it would be good to 'talk' to other parents with children of his age.

hello im a mum to a 3 yrs old readin some of this has hiot me sayin hello im not the only one i haver a 3rs old girl diagnoised nov aged 2 and i fee;l like im walkin on pins with food etc she uses nova rapid durin day and levamere for night is anyone on msn love to talk to people whio understand me and the condition im hopin to wake up one day find it been a bad dream my msn is [email protected] please i need to talk with others in same boat

Hi Debbie26. I'm sorry to hear about your little girl. It's really tough isn't it? Hard on you as a parent and so hard on the little ones. My little boy is three so they're the same age. I'm finding the food element of it the hardest - as you've no doubt gathered if you've read some of this thread! How is your little one coping - is she on 4 injections a day? If so, that must be tough - two is bad enough in our house!

hiya yeah she on 4 times a day she has 3 novarapid and 1 levimere wow how come your little one only on 2?

Hi Millie1,

TBH, if you join the CWD mailing list you will quickly "meet" other posters you have something in common with (like a young child) and concentrate on their posts and skim/delete the rest. I'll ask for tips for you and let you have any info which comes up.

We have just had a dreadful hypo (with no symptoms) of 1.7 - DS bolused for beans on toast, then decided he wanted orange juice as well, so he bolused for the OJ and forgot to drink it. I told him twice after he'd got down to drink it so he didn't go low but he was so busy playing he forgot. Had the OJ, then tested to find he was 1.7! Had lucozade, came up to 2 something, should have had more lucozade but was hungry so had cereal, tested another half hour later, only 3.5 so had biscuits and milk and has gone to bed on 5.1. I'll test in another hour ot so, by which time all the food should have kicked in and he will no doubt need a correction bolus through the pump...don't you just love it!

Hi debbie26,

If you are after people to talk to try the CWD mailing list (I have posted below on how to join). There are lots of other parents in the same situation. And sometimes friends, however understanding and well meaning, just don't get it.

Millie1,

Here's a cut and paste email from the list

"I think the best thing to do would be to move the child on to a basal bolus regimen then the child could eat to appetite rather than eat to feed the insulin. Having to eat when you are not hungry "teaches" the brain and body to ignore the normal signals which tell you that you are hungry and need to eat. Constantly having to eat when you are not hungry is damaging in my opinion and could lead to overeating and weight problem in the future. This is just my personal view and others may have different views. Some parents and kids are "lucky" and their appetite tends to match traditional meal times, so there are fewer problems and twice daily injections are more likely to suit both the child and family. Children of this age are notoriously poor eaters. We were really worried about xx(non diabetic)at this age (she had had two abdominal operations at five weeks and 18 months) . xx hardly ate anything at 3 years old. However we were told by the hospital that children of 3 sometimes have a slow down in growth and they can practically live on a bowl of cereal a day. I found it was certainly true with xx. She just seemed to eat so little!!

Children soon learn that by refusing food it causes a fuss. The only problem with diabetes is that one cant ignore it.

Another suggestion is to lower the insulin doses considerable and just give protein food like a boiled egg,, cold meat cheese slices etc. Then it wont matter if the child doesn't eat bread or cereal or not. However I dont suppose the mum will understand the logic of this if her child is newly diagnosed.

Tell her she is always welcome here and if she ever wants to join the group for a "trial period" I can subscribe her and she can just read the emails without joining in or post and ask questions. If she doesn't like the forum and its not for her or she cant cope with the emails, then I can unsubscribe her immediately.

It hard enough dealing with a child with diabetes, but doing alone without the support of others going through the same thing is even harder."

...and another

"We have the problem of a fussy eater. We give xx bake beans with just about every dinner because she does not like bread, potatoes or pasta! She is happy to eat things most kids dont like eg a plate of broccolli however this is most unhelpful! The only carbohydrate she really does like is Basmati Rice so often she eats a plate of rice and gravy (doesn't want to eat meat as it is an animal!) and veg. If your friend finds something her child likes just keep giving it until he tires of it! I remember food as being one of our biggest issues when xx was first diagnosed."

im havin a thick day today sorry can u give me the website address i put it into search and well my mind was boggled

Tangarine - thanks so much for pasting e-mails from the list - sounds like there are children there with the same eating traits as my little man! I've got the CWD website open at the moment and will register this evening! Thank you. We've eaten a huge amount of garlic bread this weekend!! Oh well.

Debbie, here's the link

Had a bit of a funny the other day. A few posts ago I told you all that DS had bolused for a piece of his big brothers birthday cake and his sugars were fine. The next day he did the same as he had negotiated with his older brother for him to have the last bit left. He injected to extra units to doscover the cake had gone! Unfortunately I had eaten it when I came in off the night shift that morning. I felt so bad for him I went and got him a small bar of galaxy chocolate. His sugars were OK after that too but I confessed to the diabetic liaison nurse. She said she would have done the same.

Then you think why not just bolus all the time but it is long term good eating habits we are striving for. Insulin will cause weight gain over time and by eating healthily that is one of the problems we're are aiming to avoid. Nice to know you can do it now and again though.

Tangarine - would it not be better to inject after meals to ensure the food is eaten that you have bolused for? My understanding is that novorapid is absorbed really quickly not like the older insulins. In my nursing days insulin was given 30 minutes before the person ate. These newer insulins can be given immediately before eating or after. That certainly is what the nurse has told us.

We will be learing about counting carbs soon by the way. That is later in the learning programme

Hi Mears,

You can bolus after meals, especially if you are not sure how much is going to be eaten or how long a meal will take if you are out somewhere for example. We bolus course by course if we are having a long lunch out for example. But even the modern analogue insulins take a while (10 or so minutes - not immediately as they are marketed) to start to kick in, so if you delay bolusing and the food is high GI the food will be peaking the BS before the insulin gets there. The insulin will eventually bring it down again, but research has shown that peaks and drops are not good for the body because of things like adrenaline (sp?) being released as the BGs shoot up and down. Far more desirable to try to limit/flatten the peaks. The CGMS spidermama was talking about is often quite revealing - if you only ever test 2-3 hours post-meals you don't see the immediate post-meal peaks when you can be in the 20's for most of the 2 hours. Many people are shocked when they see the CGMS results.

Millie - see you on CWD. I've been away all weekend so haven't been checking emails. I'll repost any which came in over the last couple of days in reply to mine about your eating problems.

DS had another really bad hypo today - 1.3 completely asymptomatic. I'm going to run him a bit higher than usual for the next couple of days to try to prevent any more. We have clinic on Thursday so I will be asking about all the hypos then.

Millie,

Another one for you

"My son xx aged 2 is on MDI Lantus/Novorapid so I just feed him what he
wants, when he wants, carb count and inject so food is no issue at all
(except for the days when all he wants to eat is Jaffa Cakes). He does
go through faddy phases. Recently he went through a 80% Heinz Spaghetti
Hoop phase and this week seems to be on an 80% grape diet.
I think the 'food' that has helped most in these situations for xx is
chocolate - low glycemic and enough carb to help with the days he
doesn't eat much carb. Kinder eggs, chocolate lollipops and the smallest
pack of chocolate buttons etc. xx's dietician suggested dried fruit
instead but xx will only occassionally eat raisins. The dietician also
advised up until the age of 5 do not go 'low fat' so the fat content of
food like whole milk and chocolate is not a problem for pre-schoolers.
I would whole heartedly recommend Lantus/Novorapid. It has made life
'normal' after a nightmare on twice daily injections. Xx's HbA1c has
been 6.1% and under for the last year too so his normal (ie not always
healthy) toddler diet is not affecting his HbA1c."

Millie,

I don't think you will have seen this one either as it was sent to cwd yesterday afternoon.

"xx was diagnosed aged 17 months and was on twice daily insulin until he started pumping aged 4. Luckily xx has always been a good eater, but on the times he did decide to be fussy it was a nightmare. I found that the best thing to do was to offer him a choice at mealtimes. If he chose the food himself he was more likely to eat it. If desperate we would give him a tin of pasta (bob the builder, thomas the tank etc) which I always kept in the cupboard - he would be guaranteed to eat this! Or he would eat just bread and butter whilst he was playing. This was not the way we planned to be before xx was diagnosed - I would have loved to have been able to say 'If you dont eat that you dont get anything else' but unfortunately on mixed insulin that was not an option. I also found food that we could feed him with whilst he was preoccupied with a book, tv or toys worked well, eg weetabix, pureed fruit etc. We also have been known to keep him going with milk or fruit juice.

The good thing to come out of all of that was that he now clears his plate at every mealtime. Of course he doesnt need to do this now he has the pump, but its become habit.

What mix of insulin is the little boy on? If he is going high on an afternoon it could be that he needs a mix with more long acting. Do they give him the same portion size at mealtimes? I found that this was the only way to get consistent levels on mixed insulin eg breakfast 30g, snack 20g, lunch 40g etc.

It sounds like MDI might be the way to go although I cant give any advice on this as we werent allowed to try it as xx was too young'!

I do hope they find a way to cope with this - they have my sympathy."

One more

"xx who is 2 years and 8 months is also a fussy eater we very quickly got her off the 2 injections system and on MDI (insulatard & Novorapid) although I am now hoping to move over to a pump as even MDI is not flexible enough.

She rarely eats breakfast so I give her milk and fruit which normally will get her through till lunchtime on just her morning insulatard with no rapid. When she does not eat enough carbs other meal times I either again cut out her rapid or if she really has not eaten any and I fear a crash I give her some tinned peaches in fruit juice which luckily she loves. I also use tinned peaches in Syrup (horrible I Know but she loves them) as her crash food. It brings her up really quick and is the only sweet food she will eat.

I think the pressure of "having to eat set amounts at set times" which you need to do with the 2 injection regime is just unrealistic for a small child.

I hope things get better for her. Personally I have found that things can only get better when you start on 2 injections and then move to MDI ."

Thanks Tangarine. I've joined up now and have been reading back over old posts. I wasn't sure whether someone else has a very fussy three year old or whether you had posted about mine - thank you for that. The replies are enlightening and it's good to know we're not alone. What puts me off basal bolus is the thought of up to four injections a day - two are bad enough and I think he'd just lose it. From a parenting point of view, I do believe it would be less stressful. I'll keep reading for a day or two and then may dip a toe in the water.

It's scarey that your son has dipped so low twice now, especially when he isn't displaying any symptoms. Hope you can get some answers at the clinic on Thursday.

Thanks again!

Hi Millie,

I hope I didn't sound rude or offend you by saying your DS was a fussy eater on the other list.

If he's not a carb lover you might be able to keep him down to two or three injections a day even on basal/bolus. A pump is even better as it's only one needle every three days when you change the canula around.

It's the knowing you are not the only one struggling I find really helpful. When DS was first diagnosed we were living overseas and the CWD group was a complete lifeline as I had literally nobody else to talk to about diabetes. My best friend was the wife of our GP who had misdiagnosed DS 10 days before diagnosis, meaning he was far iller than he needed to have been by the time we got a proper diagnosis and things were always a bit awkward after that. Because it's a closed list and you need to register the only lurkers are people in the same boat rather than random googlers.

Can I ask what experience you have all had with the 'honeymoon period?' Was there one? If so, how long did it last? DS3's glusoce leveles have been all good over the past couple of days without adjusting insulin so I am wondering if it is the honeymoon preiod kicking in.

Hi mears,

My DS's honeymoon lasted about 8 months from memory. You know you are in it if insulin needs are relatively low (less than 1 unit per kilo of body weight) and levels are relatively easy to control.

Thanks

Tangarine .... of course you didn't sound rude or cause offence by describing him as a fussy eater! He is! And he's got ten times worse over the last 8 weeks. I'm grateful you sent an e-mail on CWD. I've got a pretty full inbox which I've started reading but just don't have time to sit down to tonight. It's interesting and, tbh, a bit bewildering at times but it's all part of the learning process. Gotta run now but thanks!

Do any of you claim disabled living allowance for your child? Apparently you can?