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Newly diagnosed type one 3 yr old

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
C

Cayers

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Type 1
Hello my name is Claire our daughter Molly has been diagnosed with type one 3 weeks ago. Her levels have been very high however last couple of days they have lowered which has even led to first hypo which was scary. Molly is only 3yrs old and it's heartbreaking to think about everything that has happened. I'm back at work but feel awful leaving her at playgroup I know it's good for her. We are injecting twice daily and may have to increase to four. We are now looking into pumps as feel this will help to have better control and less stressful. Can anyone recommend the best type ?

We are a family living in Shropshire /worcestershire does anyone know of support groups ?

Thanks xxxc
 
Hi Claire, welcome to the forum 🙂 I'm very sorry to hear about your daughter's diagnosis, it must be a very difficult time for you. Thankfully, there are lots of lovely people who will be happy to help and support you with anything you are unsure of. I would suggest looking at our Useful links thread - there are links to lots of good resources there. I would particularly recommend getting hold of a copy of Type 1 Diabetes in Children, Adolescents and Young Adults by Ragnar Hanas - known as the Type 1 bible, and full of useful information about living with Type 1 - indispensable!

Also, check out Children with Diabetes organisation who may be able to tell you of others in your area.

Four injections will provide much more flexibility than two, so although it is more injections it is worth pushing for. Learning from the 4 injection regime (also known as basal/bolus or MDI) will stand you in good stead for getting a pump, which will be the best thing for your daughter by far. I'm not on a pump so can't advise - each has their own plus points 🙂

Please let us know if there is anything we can help with, nothing is considered 'silly' 🙂
 
Hi Claire sorry to here about Molly. I too was diagnosed when i was 3 and that was in the pannel pin days (big needles). I know you dont want know thinings like that but just a few words of encouragement. I am now 48 and still going strong. Keep at it and it will get less stressful the more you know. 😉
 
Hi Claire, so sorry to hear about Molly. I know just how you feel. My own 5 year old Alesha was dx type 1 just over 2 weeks ago. I found this forum in my rush to find out what I could about diabetes (thank goodness I did)
Alesha was on 5 injections a day to start with. She is now on 4 and does her own blood glucose levels. She has taken to it fine (it seems to be Mum and Dad with the problem).
We found Alesha's bg levels high to start with as well, but after 2 weeks they have leveled off and now sit around the 5-6 mark.
The books Northerner told you about are great. I bought them and the information and tips are fantastic (just like the people on here :D)
It might seem that its the end of the world as thats how I felt when i found out. But you will soon carry on as normal... Your days just take a bit more planning 😉
Wishing you and your family well.

Bob
(A very tired 3am club member 🙂)
 
Cayers said:
Hello my name is Claire our daughter Molly has been diagnosed with type one 3 weeks ago. Her levels have been very high however last couple of days they have lowered which has even led to first hypo which was scary. Molly is only 3yrs old and it's heartbreaking to think about everything that has happened. I'm back at work but feel awful leaving her at playgroup I know it's good for her. We are injecting twice daily and may have to increase to four. We are now looking into pumps as feel this will help to have better control and less stressful. Can anyone recommend the best type ?

We are a family living in Shropshire /worcestershire does anyone know of support groups ?

Thanks xxxc
Click to expand...

I really feel for you, my grandaughter Grace was diagnosed in June age 2 and 3/4's. Its a minefield at first and lots and lots of emotions running high. Grace was seriously ill but came through it, her BS was very high for a few weeks , but they settled well and she is doing great and has just started Nursery 2 days a week 🙂
I'm afraid I don't know anything about using a pump. Have a talk with her Diabetic nurse. I hope it goes well. Take care Sheena
 
Welcome to the forum. Carly is 3 now she was diagnosed 16 months ago and her level still up and down! It's difficult to control when they are still growing. She's been offered a pump so hopefully it will be better. Good luck and stay positive 🙂
 
Hi Claire

Welcome but sorry you have to be here. It is heartwrenching when anyone gets diagnosed but it seems more so when they are tiny little children, so sad.

My daughter is now 11 years old and had her first insulin injection at about 5 weeks old so we have been there with a baby, toddler, etc etc so totally understand.

We too were on twice daily mixed insulins. Then luckily Lantus came on the market and we never looked back. Lantus is part of the 4 a day injections you are talking about. There is either Lantus or its equivalent Levemir. At the moment in your mixed insulin there is a quick ish acting insulin mixed with a longer acting insulin. Unless it is a miracle and sorry to be the bearer of doom but the control on mixed insulins is pretty much nil ! They are a very antiquated way of controlling any type 1 diabetic. In Europe they don't use them at all. It is a money saving venture and laziness.

The faster you can get your little one onto 4 injections a day the better you and her will be. She will feel better for a start and family life is easier as there are not as many time constraints as there are with twice daily. It is not easy but diabetes is not easy.

I imagine you will be in your diabetes bubble for some time yet which is just fine. I belong to the Children with Diabetes Advocacy Group, we have our own website and email group which is an extremely busy group but a wealth of knowledge. We have opened a small email group for toddlers only which you may want to join. Have a look at www.childrenwithdiabetesuk.org and find the toddlers email group. There are people like me there to help who have had toddlers with diabetes and there are newly diagnosed families like yourself and there are others who have been through it and their children are 2 or 3 years down the line.

Pumps - what can I say. A pump is the closest thing to a working pancreas. The earlier and younger you can get a pump for your child the better levels you will be getting immediately. Again it is not easy but it gets easier because you get more knowledgeable and better at dealing with it all.

There are some on the email group in your area, off the top of my head I can't remember who. There are loads of support groups around the UK as well and on the CWD list they will be able to tell you where and who.

My 100% recommendation is go for a pump and push for it. Don't be fobbed off by a medical team. If you are being fobbed off come back on here and tell us why and we will be able to tell you if it is rubbish or not 😉

In the meantime my recommendation is get off the mixed insulins and onto MDI (multiple daily injections) asap and make them teach you carb counting which is the key to MDI and will help ten fold.

Obviously I am not a professional medical person (I have to write that bit) and I can only go on my experience and knowledge.

Take care and don't be a stranger. Feel free to pm me or email me if you want to. 🙂
 
Hi, very sorry to hear about your daughter Molly, my thoughts are with you. 🙂 I remember Millie's readings were initially very high, (though it didn't help she was ravenous and eating for England - putting some of the weight she had lost back on) Then came down and she began to experience some hypos, the team kept dropping back her insulin and called it her "honeymoon period" over which time she needed no insulin overnight for a couple of months if I recall rightly. We then started on the pump which has given much more flexibility with food and times of meals , not having to snack if she doesn't wish to, more control when she is poorly too. This has made things more manageable, though takes a bit of effort to fine tune.
We have the Medronic Paradigm Veo though I have nothing to compare it with, we weren't given a choice over the pump - I wouldn't have known what to look for at that time anyway. It certainly meets her needs and is user friendly. Good luck with it all and welcome to the forum x
 
Thank you...more questions

Hi thank you all for your advice it's so good to talk to others that are in the same situation as it is very hard for friends etc to know what we are going through. Yes Molly is on humiln m3 insulin today levels are lowering. I actually feel worse with lower levels as such a worry when she is in playgroup and I'm trying to work. I know we all want good control but feel like a nervous wreck. Yes you get better control with 4 injections but we are trying to not go down that route as Im not sure if her playgroup would actually inject ! If they did I would worry even more. That's why we are trying to investigate pumps. Our nhs only funds medronic...Roche and anamas. They sound good but concerned about all the leads and being an active toddler Molly could catch it, so we are looking into self funding the omnipod which has no leads and looks easier. Can anyone offer advice on pumps? Cost? Etc thanks again.

Also bg level tonight 8.8 do we need to test in the night?
 
Hiya

The omnipod is larger than you think and sticks out. There are lots and lots of toddlers on pumps on the toddler list I told you about. Some have worn harness on their back. You don't get many getting the tubing caught.

I can't recommend the Medtronic Veo enough with sensors if you can get the funding for them but even if not then the Veo is fantastic.
 
Cayers said:
Yes you get better control with 4 injections but we are trying to not go down that route as Im not sure if her playgroup would actually inject!
Click to expand...

Getting good control is really important, it will keep her feeling at her best (I feel at my very best when my BG levels are stable and not high or low - feeling either of those is horrible!) and also will help her long term health, reducing the risk of complications. Work together with her playgroup to train them on the pump - your DSN should help you with this.
 
I agree with Shiv x
 
Hi the tubing can be dealt with, we have the cannula inserted into her buttocks, so out of the way, and then snake the tube round her front into a pocket in her vests, and make sure there is none hanging down outside her clothing that could get snagged.
 
Hi Claire

Sorry I can't offer much advice but wanted to say welcome... Even though I'm a bit late lol xxx
 
sorry about your molly my graham was diagnosed when he was 3 and even now that fe is 7 is up and down so good luck
 
Cayers said:
Hello my name is Claire our daughter Molly has been diagnosed with type one 3 weeks ago. Her levels have been very high however last couple of days they have lowered which has even led to first hypo which was scary. Molly is only 3yrs old and it's heartbreaking to think about everything that has happened. I'm back at work but feel awful leaving her at playgroup I know it's good for her. We are injecting twice daily and may have to increase to four. We are now looking into pumps as feel this will help to have better control and less stressful. Can anyone recommend the best type ?

We are a family living in Shropshire /worcestershire does anyone know of support groups ?

Thanks xxxc
Click to expand...

Hello and welcome Claire. I am so so sorry to hear of poor Molly. I know how you feel because my little grandaughter was diagnosed in June this year she was 2 and 3/4 's. Grace is not on a pump, she has the 4 injections a day and has coped very very well. Her BS were very high to begin with but after a while they are doing ok. Her Diabetes Nurse says anything up to 9 is acceptable at such a young age, so try not to worry too much ( I know its hard) it will take time to adjust to everything, I found it very hard myself and I have Type 1 for 22 years myself.
Have the people at Mollys playgroup been taught about Diabetes? Grace has just started Nursery, twice a week and she has dinner there, so the assistants had to be taught how to inject and, hypo's, hypers etc.
It will take time, but you will get there in the end. Good luck with whatever you decide to do. Best wishes Sheena and a (((((( ))))) for Mollyx
 
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