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Toddler Type 1

E

EireSP

Newbie
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4
Hi there I'm new to all this and a little nervous ( Don't know why). My DS was diagnosed with Type 1 8 weeks ago just a week after his 2nd birthday. My husband and I were devastated at first. After 6 years of fertility treatment and almost giving up on having a family we felt blessed to have him only to crumble with shock when he was diagnosed. We have taken each day at a time and just got on with it, however I am stressed at times. We were on five injections a day, now we're down to 4. We check him during the night usually 2.30 am as he has been having hypos during the night. My husband works shift work so for two nights of the week he is not at home and during the day shift he is gone for 12 hours. It can be long days when your struggling on your own. I'm not working at the moment. I have taken a career break from work and was wondering how other mothers cope who have to go to work. Our son was at a creche but when I inquired about the injections they said they would not be able to administer these which I understand. The hospital said ideally we would give them, or a relative/friend who had been trained. Both my parents work and so do all my friends. I was just wondering how other mums cope!
 
Welcome EireSP,

I dont have a child with T1 but I know that there are Mums on here who I am sure will offer lots of support. I just want to say it must be awful ( I am T1 ) to find out that your little one is T1. The good news is that you will find excellent support and advice from people on here.

Sending hugs, positive vibes and bumping you up so you get some more replies,

Lucy.

xxx
 
Thanks Lucy, that's what I'm hoping for. I've gone round in circles on the internet reading all the technical stuff, but it's the practical day to day tips and support that would be really welcome.
 
I can't really help you with your question because I work part-time from home so my hours are very flexible and fit in around my children. I've often wondered how I'd have coped if I had a usual 9-5 type job as when my daughter was on injections I would go into school each lunchtime to help her with them. She's on an insulin pump now and is old enough to administer the lunchtime insulin by herself. When you go back to work would your employer give you extra time off during your lunchbreak to visit your child and do the injection? Not sure if that would be practical for you, depends how far from your son's nursery you work and what type of work you do.

I guess if you're really stuck and there are no other options you could look at having your son put onto a mixed insulin like Novomix 30, that would mean no injection needed at lunchtime however our experience with that insulin was poorer blood glucose control which isn't in his benefit long term. Although everyone is different so he may be better suited to that insulin than my daughter was. Have a word with your diabetes nurse, perhaps if she visited the nursery school and trained the staff they may be more comfortable about doing his injections. Or another alternative might be to seek out a nursery school that is more accommodating, I know with primary schools the amount of care they are willing to provide varies from school to school. It shouldn't be this way, to me schools have a duty to care and if that means giving medication (however it is delivered) there should be a school nurse or first aider trained to do it.
 
Hello, I am a nursing student looking for information on children that have been recently diagnosed with T1D. I would really appreciate any one that can answer some of my questions. What type of insulin and how many units is your child currently on? At what times and how often is blood sugar checked throughout the day? What type of diet are they currently on? What does a typical breakfast, lunch, dinner and snacks look like? Thank you!
 
This must be so stressful.A healthy toddler is hard work without this problem. In addition we would hope he has MANY years ahead of him during which he will be needing help and keeping blood glucose at safe level.
All I can do is wish all of you well and suggest you read everything you can get your hands on to learn all you can for your baby's sake.
Although I don't like their dietary advice, I do know that diabetes uk has some excellent suppor for children and parents in your position.
Hana
 
Hi. I'm so sorry to hear about your son. I was in the same boat. My son was diagnosed on the 24june 2011 nearly a year ago now! He was also just 2. I couldn't not reply to your post as I know how I felt for a lot of last year. I went through a very tough few months as you and your family may also experience. All I could deal with at the time was trying to keep jac from going too high or too low, and anything else I just couldn't handle. It was a rough few months, but it will get better. It really will! Eventually it became totally natural to check bloods and deal with the result, in the beginning it took me ages to do it, now it's done in about 10 seconds flat while he runs past too busy playing to stop!
With regards to work etc it hit us hard too. I had worked about 15 hours a week prior to diagnosis, but following that I have reduced my hours to about 8 per week. It's not a lot for now, but maybe when Jac is a bit older I can increase them again but at least I have kept my hand in for now. Our next problem is how pre school will deal with him and that's something I don't know yet as the meeting with the teachers isn't for another couple of weeks. Have you applied for Diasability Living Allowence and also Carers Allowence? You should get both and they do help out with bills and life.
Jac has just gone on a pump which is fantastic (after a month of teething problems on it) but I wouldn't rush into that just yet as I think it is important to know exactly what you are doing on injections first in case the pump fails. I think a year of injections felt right for us as we had a good idea of insulin to carb ratios etc which was needed to program the pump when we got it.
It's a tough time for you and your family, and I wish all the best for you. If I can be of any help please feel free to message me.
Emma
 
Hi, my 3 year old son was diagnosed with type 1 16 months ago and he was also on 5 injections a day, I totlally understand how you feel and how stressfull it can be. I have 2 older girls and I was told my chances of concieving again would be very slim so when i fell pregnant I was overjoyed, Ive been single parent since I had him and don`t have anyother family so his care is solely down to me. Have you considered an insulin pump? my son has been on a medtronic pump now for nearly 3 months, the first 4 wks or so are stressfull as your learning how to use it but its much easier than injections. He can have a much more varied diet too. So your not alone in the way you feel, sometimes you can also feel totally isolated and that no-one knows how you feel. If you need to sound off about anything, send me message x :)
 
Hi jen&caleb
Thanks for your reply
We are hoping that our son will be given an insulin pump in the near future. Our doctor did inform us that the only obstacle will be how our son would feel having this device attached to him. It's a challenge to get him to keep a sun hat on, not that we have to worry about too much sun lately. We brought him to the beach last week, his first time and he loved it. It moments like these that you take stock and cherish them as things could be so much worse!
 
Hi emmamadi
Thanks so much for your reply. Our son had a few hypos over the past week mostly during the night. I check him at 02.30 am. So I hadn't a chance to log on to the site. We used to use honey to bring his levels back up, but he refused it the last two times. We are now giving him two jelly babies. (He won't drink the lucozade or juice). Hopefully he won't reject these in the future.
I have applied for disability allowance but I'm not sure if we will get it as we are living in Ireland and alot of families have been refused. (Fingers crossed we will get it - we should hear from them soon). The pump sounds great and I agree we need to know the basics first. We have not started on the whole insulin to carb ratio yet. We are on fixed units. Mealtimes are a battleground. He'll eat something one day then refuse it the next time. Always have to have a backup meal just in case. But hey that's toddlers for you! :)
 
Hi, my 15 month old daughter was diagnosed type 1 about 8weeks ago, and although she is on her 4 insulin jabs per day her blood sugar levels are till very erratic despite sticking to the recommended times and carb intake etc etc... I was wondering how long roughly it takes to start regulating itself??
Have any of your children been put on novo rapid after meals and lantus solostar glargine at bedtime.
My daughter has had 27 hypos (ranging from 1.6 to 3.4) in the last 3 weeks!!! Is this still normal for someone who is on insulin jabs for 8weeks now??

Thanks guys, Lisa x
 
Dear Lisa,
First of all I'm very sorry to hear about having to find us, but I'm also sure you will get lots of support here! My son was just aged 2 when diagnosed last year and so we are a year down the road. Your daughter is a little younger than my son Jac and I know how hard it is. I hope you are coping ok and you are not too lost :? . My son was on the nova rapid and langurs routine to start with. Then he moved to nova rapid and levemir as he said the pants stand when we injected it. He has now just gone on an insulin pump which is hard work, but for us the ability to set basal rates is very beneficial. But we would not have gone on it before now as we needed to get the hang of injections and different insulin to carb ratios etc.
I can also sympathise with the irratic levels, on injections Jac would range from 2 mmols to 28 mmols, multiple times a day. It's very hard to watch them go through all this. From our point of view this was normal, but for others maybe they didn't have these levels! But for us, we went through exactly what your daughter is going through. She also may be having her 'honeymoon' period, Jacs lasted about 9 months, where his pancreas would randomly shoot out insulin just to confuse us :roll: !
Jac would have a lot of hypos, and I don't know if this is common in newly diagnosed, or just as common in little ones, but it's hard and not fun at all, Jac has only started having less in the 3 months since being on his pump, but he does still have them, just less.
I don't know if any of this is helpful to you, just didn't want you to feel alone :) feel free to message me if you need any help
Emma :wave:
 
So far I think we are doing ok, until we find her convulsing as she has slipped into a hypo on her afternoon nap (when 30 minutes earlier she had been absolutely fine)... It just makes me think when is it going to ge easier!?!
Ava's nan used to Have her whilst I went out to work (self employed hairdresser), but now doesn't feel comfortable having her unless myself Or my partner is there (he works full time too)... so ever since then I haven't really been able to work either so the money strain is also becoming an issue...
I'm just having a rant lol, I know how lucky we are to still have her :)) just wish things would calm down a little bit.

As far as the pump goes, I don't think Ava would keep it in and would be pulling at it every 2 minutes even if we were offered it haha

What units per 10grams carbs was jac put on?

Thanks Emma x
 
Have you claimed Disability Living allowance for her? She will be entitled to it, and you also get carers allowance depending on your income. I had to cut my part time hours down due to caring for Jac and found the extra DLA and carers very helpful.
You are in very early days and it's prob still a massive shock so pat yourself on the back for doing so well! It took myself and husband a while to get to grips with stuff. We only just thought we had seen hope the last couple of weeks with the pump and testing all night and adjusting basal rates , it was great for 2 weeks, and now we are clueless again- random bloods everyehere! we are wondering if it's a growth spurt? I've no idea really!
With regards to the pump, Jac has his in a Spi Belt around his waist, he has never touched it apart from when having a wee when he spins it round his belly! We use magic (emla) cream for putting in the cannula and it's fine for us. But for Ava maybe still in honeymoon it maybe harder.
Jac is on generally 1 unit to 30 grams carb, but it varies by about 5 grams depending on the time of day.
 
I have a 3 year old grandson who is type 1 was diagnosed 11.11.11. He is on 2 injections a day and we have the added pressure that he is also autistic - which causes problems in its own right - very limited with food types. My daughter -his mum- also works and has an 20 month old -very hard. It is such a horrible thing to have to cope with but you will be fine
 
HI i have a 2an half yr old son diagnosed at 18months with type 1 like natalies grandson we have other illnesses which really takes all our time. i dont know how parents get a chance to work when they have young children they must have a lot of support my son is also dyskinetic cerbral palsy which he cannot speak walk crawl. he cannot tell me if he is low or high or if he has pain anywhere he suffers vomiting everyday. i think once u have a child with diabetes u have it too it is hard and some day it will get easier :)
 
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