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worried mum

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Emmajayne

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Relationship to Diabetes
Parent of person with diabetes
Hi i have a 5 year old son and in july 2009 we found out he has type 1 diabetes, his coping really well with it, his big and brave, not like me, im still so bitter that he will have to live with this. i woke up last week and he was having a fit in the bed beside me, i cant even begin to tell you how scary it was, im so scared to sleep as im up checking on him through the night. and im babying him to, giving him his own way, which i know is not good for him or me, i just dont no what else to do.
im a single parent, with no close family so would very much like some advice.

thanx Emmajayne
 
Hi Emmajayne

So sorry you have to be here but welcome, we are a friendly bunch.

I'm single as well and my daughter is now 9 and has been type 1 since 5 weeks old. We have done it all and got the t-shirt (well quite a few now). I have had her fitting as well and yes it is damned scary. Nighttime is worse, especially for us single mums, we get hardly any sleep and then have to deal with diabetes all day as well.

You are still in your bubble, if you like it is your honeymoon as well as your son's no doubt.

I am going to take a wild guess that your son is on two injections a day. If I'm right then this is why you are having the swings and hypers and the hypos which are causing the fits. I would suggest you contact your team at the first possibly opportunity. If you have 24 hour access to a team then ring tomorrow, if not then Monday morning. They need to sort the regime out and quickly. Too many lows and fits are unacceptable and they should not leave you like this. It is about taking care of the family as well as the child and some teams get this right, I hope yours is one of those sort of teams.

Where abouts in the country are you?

Take a look at www.childrenwithdiabetesuk.org it is written by parents for parents like yourself. On the first page you can join an email group. I urge you to join. I'll see you on there along with a few of the other mums on here, Bev, Becca, Patricia. You will suddenly find yourself in amongst people who totally and utterly 100% understand how you feel and they can help you and will help you in any way they can.

There is absolutely nothing wrong with spoiling him at the moment. This is a biggie and you and him have to get your heads around it the best way you can. Infact spoil yourself as well. I still do when I can. Do you know, even if you did have family around, as good as they may be they would never understand on the same level as you do. I do, and so do the others on here and on the email group.

Ask any question you want to at all, no question is ever a silly question, we have all asked them.

The reason I asked where you were in the UK is because I am hoping I may know someone near you that I can put you in touch with who is also a mum with a child with diabetes.

Take care and again welcome, you will be ok and so will your son 🙂
 
Hi Adrienne,

Thank you so much for replying.🙂
Your right Harry is on 2 injections a day, his amazed me with how his coping with it, he hasnt once moaned about having his needles and that (i know im lucky there.)
i live in london well newham and to be honest theres not much support, his DBN is not that great either, ive been waiting weeks for her to sort out a care plan at his school.
I will defo have a look on that web site page, will be great to get as much infomation and support i can.
Your message has gave me some hope

Thanx again

Emma
 
London eh, well you are in the perfect location to get referred to the best hospital in the UK !! What hospital are you at? We are under University College London Hospital, they are one of the best in England, the two top ones are this one and then Leeds although I personally believe the UCLH pip Leeds to the post.

There are other good ones but not quite in the same league. If you do not have faith in your team and you DSN seems to be not that brilliant if there is no care plan yet and she expected him to go to school, not good then you can easily get referred elsewhere. Let me know if you fancy that and I'll tell you how. Lots of people do it.

Kids are amazing, they are so resilient and just get on with it. He will have bad days over the years and that where you need to be strong so he can lean on you as much as he wants.

Take care
 
HI Emmajayne,

Welcome to the forum, and as Adrienne has said, I am sorry it is in these circumstances that you have come to find us.

I am not a mum so I have no experience of what you are dealing with, only the diabetes part of what you saying as I have type 1 myself. I just wanted to post and say hi, and I am relieved to see Adrienne has found you. The mums/parents in the site are made of the forums very best stuff 😉

Just to say we are here, all of us and happy to listen even if you just need to blow off steam- there is normally a handful of us online. Some of us wont know your situation first hand, but we know the complete and utter frustrations and journey that diabetes takes you on and we will always lend you an ear.

(failing that, we have a very good online virtual pub open 24/7 😉)

I sincerely hope things with you and the little one improve. Sending you love and hugs,

Louisa x
 
ah ha, just replied to your other post, I knew another parent would be along soon 😉
 
Hello Emmajayne and welcome.

I can only second what Adrienne and Lou have already said. My son was diagnosed with type 1 two years ago at the age of 10. I have found this site invaluable for support, advice and information. I hope you do too.

I have to say that when he was first diagnosed and put on 2 injections a day I thought any chance of a 'normal' life were over but when we swappped to mdi (multiple daily injections) my son (and us) got our lives back to a large degree. So much better control on mdi and more flexible eating. My son is now on a pump which gives even more degree of flexiblility and better contol.

Look forward to getting to know you.

Take care. 🙂
 
hi emmajayne and welcome to the forum as you have seen now they are wonderful mums in here any worries or any advice you need its all in here x
 
Hi Emma

welcome to the forum, my son who is 8 was diagnosed with type 1 just over 2 months ago. We are also on the 2 injections a day, not really working out for us at the mo, B/G are all over the place. My son started on mixtrard 30 but he is now on humalog mix 25.


Adrienne is great, she has be very very helpful to me. there are a few mums on here who are very helpful so feel free to ask any questions.

gem x
 
Hi & Welcome

OMG!! My son was diagnosed in June aged 8. Luckily he has never suffered a 'fit'. What action do I take if he does?

jan
 
Janet said:
Hi & Welcome

OMG!! My son was diagnosed in June aged 8. Luckily he has never suffered a 'fit'. What action do I take if he does?

jan
Click to expand...

Hiya Jan

You would need to test him if possible and probably give the glucagon injection. Fits are not all jerky fits that you see on TV, some are still, silent seizures and some are staring. Sometimes they will hallucinate as well. My daughter used to swear someone was behind me. She would look straight through me in terror and afterwards I would ask why and she said there was always someone behind me, used to freak me out.

I used to give lucozade or coke to the staring seizures and that was fine but one particularly bad on last year I had to give glucagon. I tried coke but she just bit on the straw. She was 1.7 and so I had to give her the injection of glucagon and within minutes she was coming round and crying.

Ask your team about what to do if this happens. If you have not been given glucagon then ask for it from your team, have one at school, one at home in the fridge and one with you when you go out, so a minimum of 3.

Hope that helps.
 
Hi Adrienne

Thank you so much!. I always value your advice. I do have a glucegon injection for emergencies, I thought if anything it would be to use during the night, never did I imagine it would be needed during the day. (Am I stupid or what!!) I'm so new at all of this and there is so much to learn, I wonder will I ever manage to get to grips with everything.

I will certainly ask for another couple for school and to always have incase of emergencies.

I must admit though I would only have imagined a 'fit' to be the tremor kind and not what you have explained to me from your experiences.

Again, thank you for your valuable and knowledgable advice x

Jan
 
Hello Emmajayne (and Jan -- not sure we've met?)

Just a quick note here to back up everything everyone has said. Emmajayne, my son was diagnosed Nov 08, and while we are reasonably 'settled' (now on pump), there continue to be many bitter moments. I can't imagine these ever go away.

Give yourself time and as much space as you can grab. It's a very big deal, and requires endless patience, energy, and quite a lot of stoicism.

I never thought I would depend upon or need support of any sort outside of my very wonderful family... but I do, for this. You have entered a friendly, warm, and caring group here -- and a very knowledgeable one. Please know that we are always here, for everything you feel and all you are doing, should you want/need us.

Best wishes.
 
Hi Patricia..lovely to meet you too.!


Thank you for your warm and kind words. It is so reassuring to know that we 'newies' are in very safe hands.

Jan
 
You're welcome, Jan. I 'found' this group I think in about January of this year, only 2 months after my son's diagnosis and close to the actual start of the forum I think... and more than once, I have been achingly grateful for the people here (see 'dreadful ketones, hospital' on the main board, for a night when two members more or less sat up with me when my son went to hospital!).

Also, do look up www.childrenwithdiabetes.org, uk branch. They are also really excellent, full of parents. I find it more difficult to manage the email group, just personally, but I do know that if I need anything, or can help in any way, we are all there for each other there too...
 
Hiya again!

I will certainly take a look. Although I did try to look up 'travel insurance' which was a previous topic that was discussed before I found the forum.

The instruction I was given was to go to members list. Then, calender - new posts and to type travel insurance. Didn't quite work so I have still to read up on that topic.

So.....more help needed !!! Not exactly a whizz with 'technology'!!!

Jan
 
hi graham was diagnosed when he was 3years old and has been on 2 injection for 6 months multiple injection are much better especially with the school activities xxxx bye [graham is now 5 in year 1 ]
 
Hi Steff


Thanks! it worked this time, I now have some useful numbers re Travel insurance.

Wish me luck

Jan
 
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