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Help!!

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J

jodywody72

New Member
Relationship to Diabetes
Parent of person with diabetes
Hi
My son Luke is 7 and was diagnosed with diabetes type 1 at the end of August. He is doing his own injections and blood tests. We are both really struggling with the whole thing and he doesn't understand why he has to have it when nobody else does. He had his flu and pneumonia jabs yesterday and it was awful as I had to hold him down while he screamed as they put the needle in. The nurse said it was the same as his normal injections, which was a big lie! By the end of it all the nurse's assistant was hugging both of us, and I haven't stopped crying since. I am lost with food and carbs and the dietician just confuses me more and more each time I see her.

I'd really appreciate any advice that anyone can offer regarding how to explain all of this to my son and any food tips as I am basically just making it all up as I go along at the moment, which I can get away with while he is in the honeymoon period.

Thanks
 
Hey and welcome................

The Parents section in here is really really good, so my advice at the moment, is breathe, relax and go and have a browse in there.....(your here already, thumbs up....)

The diagnosis must be really hard for you both...........daily routine will change but it becomes normal fairly quickly............

You can learn alot on this forum, together with help from the diabetic team you will feel much more relaxed............:D
 
Thanks. I will have a look at the site in more detail. My mind is just on information overload at the moment and I have stopped taking things in which is not good. It's great to have sites like this as I don't know of anyone else with a child with diabetes who I could talk to.
 
Hi Jody,

Firstly welcome to the forum- this place is amazing & there are some fantastic parents on here with years of experience who I know will be able & willing to help! 🙂 I'd also like to say that I think your lad is brilliant to be doing his own injections & tests at age 7 - I was diagnosed at 11 months & put off doing my injections etc til I was... well, embarrassingly a heck of a lot older than 7! 😉 So he's doing really, really well.

Have you had any structured support with carb counting? I believe there are some online courses that you could follow but I'm not sure where they are - hopefully someone will point you in the right direction soon! (Northerner, help?!!) Adrienne & Bev in particular are two of the mums on this forum who I am sure will be able to give you lots of good advice about carbs, bolusing etc! Also support for you too. There is also a children with diabetes email group thing that they will be able to tell you about too...

I'm not sure what to say about what you could tell your son about why he has diabetes, but your care & reassurance that you are there for him will mean so much. Although it will hard work, he can still live a relatively normal life, we have members here to get up to all sorts of extreme activities, travel, do amazing things. 🙂 I know that probably doesn't help right now, but honestly, I am sure that you will find with time & experience it gets less overwhelming - and we're all here to help!

All the best,

Twitchy xxx
 
Hi there,

Firstly hugs to you and your little one, you`ve both had such a lot to deal with over the last few weeks!
Your son is a little star to be doing his blood tests and injections already, thats great.
I know when my son was first diagnosed, i felt so lost and overwhelmed. There seemed a baffling amount of information to take in, changes to routines and at times i felt like i had a newborn baby all over again! I cried MANY tears ...
I can assure you that things will get easier, life will begin to feel normal again and, i know its so often said, but kids are SO resillient and your little one WILL settle into his new routines and begin to accept his diabetes.
Foods, carbs etc .... Everyone thinks "yikes!" to begin with, but again, you`ll get to grips with this before long and it will become second nature to you. Explain to your dietician that your struggling, i did!! She had to spell things out to me!!
But most of all, give yourself time. You`ve had a shock and a traumatic few weeks.

Cat x
 
Thank you all so much. It really helps to hear your comments. We are away for a week so I look forward to your comments and help when I get back. We are going to my parents first, who are the most unhealthy people I know who never plan meals etc, so that will be fun! We are then off to York for 4 days and have vouchers for Pizza Express, Strada and Cafe Rouge so eating is going to be fun!
I am going to ask to see the dietician again as I felt completely lost when she talked to us this week. She said that we were doing great as we don't really need to change much meal times but said that we need to make sure we don't give too many carbs/not enough veg etc. How do I calculate that? When we have a roast Luke will eat 6 roast potatoes. I have no idea if this is too much. I don't know how much breakfast he should be eating. I have a habit of making him eat lots so that he reduces the risk of having hypos at school. He is such a skinny thing that I worry he isn't having enough. His levels were high this week and the consultant said it could have been what he ate so I don't know what I'm doing at all really.
I do feel like I have a newborn and that I am starting again with everything. Leaving him is hard but I made myself do it straight away as I think it was important to keep in him a routine. I made sure my friends were fully trained before letting him go!
I will look online at the courses as I think that will help.
Thanks again.
Joanne
 
Hi Joanne, welcome to the forum 🙂 Sorry to hear of your son's diagnosis, but it sounds as though he is being very brave and dealing with his own injections and blood tests. There is a tremendous amount of information to take in, and you learn something new every day. Over time as you gain experience you will gradually be able to improve things and the diabetes will have less of an impact on all your lives 🙂

I'd recommend you get hold of a copy of Type 1 Diabetes in Children, Adolescents and Young Adults by Ragnar Hanas. It will explain everything you need to know about living with Type 1. Well, maybe not everything, but for those things it doesn't, you have us! 🙂

Also, there is a wonderful site which we share many members with http://www.childrenwithdiabetesuk.org/ which you should find helpful.

Finally, here is the website for an online carb counting course that you may find useful

http://www.bdec-e-learning.com/
 
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hi joanne i simpathise for the flu jab is not like an insuline injection at all the needle is 4 times bigger and graham always crying before even he goes in to have the flu jab and i never had any problems with his insulin injection so dont worry i am still in a bit of a mess with graham after 3 years of his diagnosis and we start carb counting in may so good luck
 
Hello and welcome to the forum.🙂

If you have any specific questions - just ask - no question is considered silly and you have a lot to learn - so take your time and I am sure we can all help you through it all.🙂Bev
 
Welcome to the forum, my daughter was dx at the age of 23 months old last June, not long before your son was dx.
She was on highs and lows, now she is more stable but still hypo frequently. She was on 2 injections a day, now on 4 a day and carb counting... she had 1 unit every 20g of carbs then 1 in 15g and this week it's changed to 1 in 18g because of her hypos,she showed no sign of it when she was 2.4 so its a bit worrying as her body may be used to her hypos she usually showed signs but not lately :-(
Still Carly is doing well now, she was very skinny and now after 4 months she is looking much better 🙂
Good luck with carb-counting, once you get into it then its will get easier - I write down Carly's diabetes diary which included carb-counting, I find it very useful.
 
Not at all helpful to say immunisations are like insulin injections - into muscle with a much larger needle, not into subcutaneous fat. Still, that's a bit much to expect a 7 year old to understand. I'd suggest telling him that's he's better at doing injections and blood tests, because he does them every day - the person who did his immunisations has days off, and she should be damn grateful. He's very brave and good for doing his own every day.

Not sure what he enjoys doing, but there are plenty of adults with type 1 diabetes who still do things that children enjoy - in my case, leading activity birthday parties, involving combinations of running round woods, playing with worms, climbing trees, pond dipping, orienteering etc.

Carb counting means basically eating what you want and adjusting insulin to match, which does take a bit of practice, and you won't always get it perfect, so don't be too hard on yourself. Many of the books etc alreayd suggested will help.
 
Hi Joanne

Sorry you have had to find us and sorry I didn't log on yesterday to see your message.

First things first and a big 'DON'T PANIC' and give yourself a break. I understand, all us parents do. You are going through the grieving process for your healthy child. He hasn't changed only his health. I imagine he is scared like you are. It is a huge thing and it will be so good for you to read about other families like yours and to be with people like you, even if it is online.

I belong to two types of forum. This is a great one you have found and the adults with diabetes, 1 and 2 are a great inspiration for us parents to listen to them and how they deal with it.

For the children specifically you should join the Children with Diabetes email group. It is an email group rather than a forum like this one. You will be inundated with emails mind you and it can be overwhelming to begin with but persevere, it is worth it. Some people open a googlemail email address specifically for that group (or hotmail or Yahoo of course).

You will find that email group and how to join at our website which Northerner kindly let you have. www.childrenwithdiabetesuk.org We wrote the website as well.

No question is a silly question, we have all asked it at some point or another.

With regards to food (I am presuming and hoping that your son has been put onto MDI - multiple daily injections, which consist of novorapid at each meal and one shot of levemir or lantus) your son can have whatever he wants pretty much. A healthy diet is one that is needed, like we all should have.

On MDI you give the right amount of insulin to whatever carbohydrates your son eats. I am hoping that your dietician and DSN gave you a starting point of how much insulin per carbs per meal.

For example 1 unit of insulin for every 10 carbs Luke eats so that if for example he has 40 carbs for breakfast he would have 4 units as that would cover the 40 carbs.

Always work with the 1 unit for every........ carbs ie you could be given a starting point of 1 unit for every 20 carbs. After a few days this will change as you find out (by testing) that that is not enough insulin or too much. Most people find that they need different carb to insulin ratios for each meal. Most people need more insulin for breakfast than teatime as you become more sensitive to insulin as the day wears on.

So if you starting point was 1 unit for every 20 carbs, you need to test 2 hours after giving the insulin at every meal to establish if that is right. After say 2 or 3 days you may find Luke is too high two hours after breakfast and so you can alter the ratio and try 1 : 18 (1 unit for every 18 carbs eaten) and similarly for the other meals.

I know that most people find carb counting and matching the doses the most daunting thing about diabetes. Give yourself a month or so to learn and get the hang of it and you will not look back. It is easy but you have to get your head around it and accept you will make mistakes at times (many, as we all do) but you will understand it and do what you can. We can help you. There are carb books to help and if you have an iphone or ipod Touch there is the best app in the world Carbs and Cals at ?4.99 that you just have to download. Otherwise look on Amazon and buy the Carbs and Cals books. It is by far the easiest carb counting tool out there. You will need digital scales, preferably that do liquids so you can weigh milk etc for cereals. Lloyds Pharmacy do cheap good ones.

Anyway gotta go, need to work :(

Take care and pm me for anything and if I don't answer, get Bev to text me 😉

🙂
 
Hi Jody,

Just wanted to say welcome to the forum, and I actually live in York, and I'm sure you'll have a great time here. If you did want to grab a coffee or something whilst you were here, and just to chat with someone, just let me know! 🙂

Becky
 
welcome

HI sorry to hear of diagnosis of your son.

I echo all the things others have said.

Can you do something to pamper yourself? Give yourself some me time.

Someone else has already used the word 'shock' and thats partly what is so draining on everything, the shock factor will pass and you will find your new normal.

Keep chatting on here - these folk become best friends when you don't actually know anyone else with a child with diabetes.

thinking of you
Rachel
 
Hi Joanne

Hi 🙂

Reading your post reminded me exactly how I felt in those early weeks and my son is 20! It was such a shock, with such a sudden onset of symptoms. All sort of emotions surfaced and lots of tears but just to reassure you that it does get calmer and you do adjust quite quickly.

I couldn't go in to a supermarket without tears and panic as I just hadn't a clue what to buy and like you felt totally lost with carb counting and food BUT as the weeks ticked on we did adjust and carb counting got a little easier.

My son went back to uni and loves it.....he has adjusted amazingly and is carrying on perfectly normally.

He is hoping to do the DAFNE course soon as carb counting is still hard for him (we have had 1 lesson...our dietician wasn't too good either) but we are getting there.

it is a hard as a mum....do understand how you feel.
Take care
Sue x
 
Thanks!

Thank you everyone for all of your comments.

Our little break away did us the world of good as we had to learn how to handle things by ourselves rather than asking the nurse etc all of the time. We had great fun injecting in disabled toilets in restaurants etc! Luke had a few hypos while we were away but we dealt with them. He is now so much better at doing his injections and even did them in front of all of his friends at a halloween party. They all helped him count to 10 as he held the needle in which was lovely.

We are not carb counting as yet as Luke is still in the honeymoon period. We are watching what he eats etc but don't change the insulin amounts. He is making a lot of his own insulin so has gone down to one novorapid a day plus insulatard and levemir.

Luke's readings seem to be going down quite rapidly when he exercises now. He had two hypos while we were away and one yesterday. These were all while we were out walking and his readings had been fine before setting off and he had his snack just before going out. I was thinking of giving him a sugary drink to take around with him.

We have found a family who have a little boy the same age as Luke with diabetes. He has had it for a year now and we are all very excited about meeting them next week. I think it will help us all a lot.

Thanks again for all of your comments. I will check out the websites you gave me and will no doubt be online with queries soon!

Joanne
 
That's great news Joanne! I hope that the meeting with the other little boy goes well - it sounds like you are all feeling so much better about things 🙂 Certainly, Luke should have some fast-acting sugar to hand in case he goes low. Although much older than Luke, I found that my insulin doses reduced considerably in the first few months - there is a theory that the pancreas recovers a little once treatment is started, so more of your own insulin gets produced.
 
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