DS 4.5 diagnosed with type 1 diabetes

[Kaybeeand2boys]

My DS was diagnosed a week ago with diabetes. Luckily I picked it up early as he was drinking loads and weeing loads, lost weight and had no energy. We are all still trying to get our heads around it.. Any others with young kids who have it out there?

[focuson]

Hi laundry so sorry to hear about your sons dx the first week is so daunting. Our son was dx just over a year ago when he was 8 so older than your ds. He started on multiple daily injections and now has a pump. I do hope you are ok -

[focuson]

Sorry bleeding autocorrect kaybee

[BerthaTheBogBurglar]

My ds2 was diagnosed in Feb this year. He is 4, too. He went onto an insulin pump in June, which is fab. We were on MDI (4 injections a day, counting carbs to calculate the dose) before that. What is your son on?

It is a huge shock, and a big adjustment. I can count carbs and spot a hypo in my sleep now, though. Ds2 has mostly taken it in his stride. The thing that annoys him most is having to sit and wait while he comes up from a hypo, when he feels fine and wants to get back to running around!

Sleep is a bit thin on the ground though, and I haven't yet worked out how dh and I will ever get a night out together again ...

Have you found the Children with Diabetes mailing list?

[lunareef]

May sound obvious but do all the research you can into diabetes. The pump is great at managing glucose levels especially in little ones. You really need to educate yourself as much as possible which I'm sure you will. It really is your condition as much as his but you will do great with the knowledge surrounding it. Hypo's are scary as hell and if in doubt never be scared to ask for help even if from the emergency services, as often these things happen out of hours.

[MaggieMcVitie]

Hi Kaybee
DS2 was diagnosed last year just before his 6th birthday. He was on MDI but now on a pump (which is fab). Your learning curve at this point will be practically overhanging but I promise it does get better, although diabetes will always be waiting to throw a curve ball just when you think you've got it sorted!

Don't expect perfection with blood sugar levels; keep good communication with your DSN; keep good records of blood sugar levels, food and insulin and above all find some support for yourself. When you are feeling more confidant, train a friend/family member so you can leave DS confidently - even if it's just for a couple of hours - and get yourself some downtime.

There's a good facebook website too which you might find useful - good for support and questions - Diabetic Mums UK - eveyone's very friendly and helpful.
Hang in there...

[paddyclamp]

Not got a child with diabetes but i was diagnosed with type 1 when i was a kid and i'm now in my 30s having survived school, uni and childbirth relatively unscathed! :) .... Have said this many times but i think the whole thing was more traumatic for my mum than it was for me....It's a pain at times for sure but it really does just become normal eventually

[hungryallthetime]

I've got a 10 year old diagnosed last year. It is soooooo much to take in at first, but you will soon get to grips with all the terminology. Agree with the others it does get better - well it just becomes part of your life, the important thing is not to let it take over! We do get a babysitter so we can goout, have family to look after him on the occasional weekend, and let him walk home from school with friends - its a difficult balancing act!

Go on the Facebook group though, it's so useful to get support from others in the same boat. Good luck!

[Kaybeeand2boys]

Thanks so much everyone for your replies.
We are actually in living in NZ now, so I guess things are a bit different here. DS2 has 3 injections of insulin a day and we have to do finger prick tests before every meal and at bedtime.
He is eating loads at the moment as he is trying to regain the weight he lost before he was diagnosed. They told us that we didn't have to change his diet but obviously we aren't giving him any chocolate, cakes and overly sweet stuff. I don't think pumps are funded here, so we'd have to pay about $5000 to get one, once he is ready I guess. At the moment the specialist nurse is still trying to get the doses right for him...

[sonsmum]

Firstly, my sympathies......it is a shock when it happens as life changes forever.
Secondly be prepared for the ups and downs....but you will get through it.
My DS was diagnosed a year ago at age 4. we caught it early too so no ketoacidosis thankfully. He ate loads after diagnosis too - 4 weetabix for breakfast! Then appetite calmed down to a more normal level. We are on MDI and he has 5 injections a day (we split background levemir to morning and night) to prevent night time highs. We carb counted from day 1 and have managed to maintain reasonable control (HBA1C has been 7.4-7.6).
My DS has adapted...he is never going to love having injections but he has a degree of acceptance and he is pretty resilient, but is not yet hypo aware which is worrying at times as he is totally dependant on having this detected for him.
While there is never a good time to develop this undeserved disorder, i am of the opinion that age 4 is possibly one of the most convenient ages to develop it.....they are old enough that you can reason with them a little and can begin to teach them why you have to injext them and why they cannot have a large snack and instead need to await dinner time.....and they start to manage their life and start to learn to live with it and will start to see it as the norm to eat and inject, and they are at an age where you can instill good control in them....ie instill that a blood glucose between 4-8 is good. Hopefully then they have a good grasp and good control before th eteenage years hit, when they may want to go a little wild anyway and when control will be hard due to the insulin inhibition by the hormones. I think developing this as a teenager has to be the worst time to get it. Therefore remember that when things are lookign really rubbish....as you wil lhave those times and will feel completely crap about it all.
One year ago, I was devastated that my gorgeous DS has to cope with this for the rest of his life (UNTIL a cure is found) but now i am confident he has every hope of leading a fulfilling life and each day we learn a bit more and each day use our growing experience. good luck

[Bramblesinafield]

Hello, I'm so sorry that this has happened. My Ds was dx'd aged 7. He's 12 now and has been on a pump for four years. We now have a pump with continuous sensors, which is amazing, although we pay for the sensors.

When he was injecting finding out about carb counting was a total life changer for us and meant that we understood so much more about how his food would affect his levels. I hope your team can help you with this. There is a great iPod app called carbs and cals which can help count up for each food too.

[Kaybeeand2boys]

thanks sonsmum and brambles.
So can you all give me some ideas of what to feed my ds. I feel like I am really lost. He has gone off so much stuff lately.....

[OxyMoron]

Hi, sorry to hear about your ds's diagnosis. We're 3.5 yrs in. My dd was diagnosed as a baby and is now 4 and just starting school.

It's so much information to take in, don't worry if none of it makes sense at first. It will in time and you'll become the expert. For now keep working closely with your DSN.

My daughter went straight onto basal-bolus insulin where you have one injection of long-acting 'background' insulin per day (that's the 'basal' bit), and injections of rapid acting insulin with meals (that's the 'bolus' bit). We were taught carb counting straight away, which lets you adjust the insulin to match the food and means they're not restricted in their diet.

Top tips would be the children with diabetes email lists and/or website, the Type 1 Diabetes in children book by Ragnar Hanas, and Gary scheiner's book "think like a pancreas".

Good luck with it, it will settle down and become part of life.

[BerthaTheBogBurglar]

Kaybee, are you counting carbs and then giving him the appropriate dose of insulin? Or are you on fixed doses?

If you're carb-counting, you can feed him what he fancies, and slowly get him eating healthier. Just a normal healthy diet that you'd feed your child anyway, doesn't have to be anything different because of diabetes.

If you're on fixed doses, that's harder. Talk to your nurse and ask to switch!

[Bramblesinafield]

Bertha speaks wise words.

It also helps to know what is low or zero carb, particularly in the early days where you're having random highs and your child is hungry.

We give Ds cheese, sugar free jelly, meat substitutes (we're vegetarian) and eggs when he's hungry but too high to be given carbs to - or when injecting he didn't want another injection.

[Bramblesinafield]

www.childrenwithdiabetes.com/uk/

You would be very welcome on the mailing list. Please open a gmail account for it to cope with the volume of emails x

[Bramblesinafield]

Tell them that a cwder spotted you on mn x

[BerthaTheBogBurglar]

Ah yes! When he was on MDI (multiple daily injections) we used to give ds2 lots of cheese to snack on when he wanted a snack but didn't want an injection. He also likes cucumber, sweet peppers, and carrot. We're not vegetarian but he inconveniently doesn't like meat - I know other people's children snack on ham and chicken etc. Most veg is low-carb too, if they'll eat it.

[Kaybeeand2boys]

Hi, I guess we are on some kind of multiple daily injections.. Though at present he is only having one injection in the morning and sometimes one at dinner and/or bedtime.
This afternoon he had shot up to bg of 15 and no idea why and he was complaining of being hungry and tired and hadn't seem to have eaten much. I just had no idea what on earth to feed him. All he wants is carbs carbs carbs and all the things he can't have like iceblocks, muffins, brownie :-(
I feel so bad that I have to keep saying no no no all the time to him. He's only 4.

[paddyclamp]

The diet won't be so restrictive forever...it's just a case of tweeking the insulin regime. How much has the nurse said about carb counting? .... I eat pretty much what i want and when, but i have to take insulin with it and adapt the dose accordingly :)

[BerthaTheBogBurglar]

There is a lot of randomness involved in diabetes - "really good control" is being in range (4-8) 70% of the time. Which means 30% of the time, they aren't!

Ask your nurse about carb-counting. MDI means you do one injection a day of long-acting insulin, which gives them a constant background level of insulin, and then you give an injection of rapid-acting insulin with breakfast, lunch, and dinner. And you count the carbs in those meals and then give the dose of insulin that matches the carbs - you have a ratio, like maybe 15:1, which means you give 1 unit for every 15g carbs. This way, he can have a brownie (or six) with his dinner, and you keep the lower carb snacks for in between meals.

[Kaybeeand2boys]

They have said nothing about carb counting at all. Maybe waiting until he is a bit more settled to start I guess. He goes to Kindergarten(we live in NZ) 3 times a week from 9 - 2.30 so I guess they are trying to avoid him having to have insulin at lunchtime. And he seems to be on 'honeymoon' so some days doesn't seem to need much at all, then other days like today he is high all day.

We went to clinic on Tues and met with the paediatritian, diabetes nurse and diatician who all said that he can eat whatever he likes, and whatever he would have eaten before... I just feel like I don't believe them!

[BerthaTheBogBurglar]

Ah, ok.

TBH, if you feed him whatever he would have eaten before, they'll be able to get a better idea of his insulin needs.

[Kaybeeand2boys]

Yes I guess that's true. Well we've been doing that so hopefully at his next clinic they can have a better idea of how much insulin he needs. For the first two or so weeks he ate like a horse so he has finally settled down into his normal appetite which will help...

[Tiggywunkle]

waves
I have a 4 and a half year old newly diagnosed with Type 1 diabetes and possible coeliac disease. I need a bit of hand holding I think. Its been a month now but she's sick at present and things are all over the place and my nerves are fraying....its so stressful keeping her safe.

[BerthaTheBogCleaner]

Hello! Since ds2 got diabetes I am terrified of him getting a vomiting bug, its so scary and such hard work. I've told my friends that the 48-hour rule applies to my house and they think I'm a bit over the top. They're not the ones getting up every hour in the night and wondering at what point to head for hospital!

I linked to the CWD list upthread - best place for hand-holding.