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omg shock! son just diagnosed

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soostark

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Parent of person with diabetes
Hi everyone
i am sophie, my son merlin age 9 has just been diagnosed type 1
and what a shock it all is.
he was so poorly and had no idea what it was until we took him to hospital, he then had to have an ambulance to the childrens hospital 30 minutes away. he lost so much weight in under 24 hours and his whole face went very skeletal too, he was in a real bad way, we could have lost him if we didnt get him to hospital when we did.
i cannot get that out of my head, the fact he was literally dying in front of us, not knowing he had severe dka.
he has just come home from hospital and today we have managed fine with everything, although very nervy.
his diagnosis has completely thrown us, and just cant believe it.
how do you get through the first few weeks and getting over the shock.

i have a severe needle/blood phobia which obviously complicates things, but i have to be there for my boy and get over this, is anyone else in or been in similar situation? at the moment dad is doing the pen injections and ive managed to do one finger prick test and squeeze the blood out. i have to be able to do them,

the whole thing, im just in shock with, i feel so sorry for him,even though he is doing well, i just want to take it all away from him, which is never gonna happen :( im hoping to meet some other people to chat to about this
 
Hi soostark, welcome to the forum 🙂 Very sorry to hear about your son's diagnosis though :( It can be a very big shock because symptoms can develop so quickly - I lost a huge amount of weight prior to diagnosis and was extremely ill, not knowing what on earth was wrong with me. It must be even more distressing when it is your child. The good news is that, very quickly I was feeling much better thanks to the treatment. There is a lot to learn, but try not to be overwhelmed by everything. It will be hard at first, but it does get easier and there is no reason whatsoever that it should stop your son living a full and normal life - people with diabetes can achieve just what people without it can, and often more than most.

I would suggest reading Adrienne's guide for parents here:

http://www.diabetessupport.co.uk/boards/showthread.php?t=23853

Also, there is plenty of support available, both here, from JDRF and Diabetes UK and from the organisation Children with Diabetes. Have a look in our Useful links thread for links to more resources - I would particularly recommend getting a copy of Type 1 Diabetes in Children, Adolescents and Young People by Ragnar Hanas, an excellent reference guide to Type 1.

Please feel free to ask any questions you may have - nothing is considered silly - and we will do our best to help.
 
Hi Soostark,


Northerner has said it all really - but just wanted to add that the CWD group are having another weekend break next year and if you join CWD you may be able to get a place (but there is a waiting list). Families who have a child with Type 1 have an annual break (organised by Adrienne) where the children make great friends and the parents get to chat and enjoy themselves. My son (14) was diagnosed at 10 and I felt much the same as you do now - but I promise you it does get better and you will become a 'normal' family again once you are over the shock.🙂Bev
 
Hi soostark-I too am a parent who is total needle phobic have even cried at the dentist !-I know how drippy am I !!- so I totally understand - our son was 15 when dx so was able to do his own injections -but the nurses said we should do the lantus one - so I made myself do it and I just kept thinking this is only a minute out of my life I can and will-It will be hard but you can do it- as he gets older he will be able to do these things himself - he may find it easier to do the blood tests himself soon.The first few weeks are hard but you will get there- things just take abit more planning.Keep strong and youve joined a great forum everyone will always help if you need advice
 
Hi sorry to hear about your son. I have been at it for a long time & needles dont make me jump for joy aswell. I dont know anyone who loves them. These days needles are so thin & diffrent sizes not like the pannel pin days in the 60s when i started at age of 3. Really really good luck sorting things out, it will get better. You have come to the right place for addvice etc 🙂
 
{{Hugs}} to all at your house Soo.

Jabs - amazingly when diagnosed at age 22 and having had various jabs which I never exactly enjoyed, LOL though not needle phobic - my first insulin jab given by a nurse - I DID NOT FEEL. And that was with the comparatively hedgestake ornage needled disposable insulin syringe that they used in hopsitals then.

I can only suggest you stick a nice new needle on an empty pen and make yourself jab yourself until you are happy with it. I defy you to make it hurt! However if your skin is wet (from nervous perspiration, bath water or anything else!) then it WILL hurt.

Fact is if it's YOU that had it, you'd have to. Just like we did. And there's no point in messing about, do it or die. Given that choice, actually there is no choice! LOL I think with a child, you have to tell yourself the same thing. You'll get there - but only if you WANT to. Honest.

My first husband had no probs whatsoever in jabbing me, doing my blood tests etc (if I let him which was rare!) but try sticking anything in him and it's different LOL No 2 is quite happy whether it's him, me one of the kids/grandkids/one of the dogs. Which suits me! I hate FUSS about it. So don't!
 
Hello and welcome.

Sorry to hear about your son's dx, I remember going over it all in my head - what happened, what I could have done differently. It is quite a shock and a new way of life for you all.

I hope you can get to grips with your phobia, must be hard but keep in mind what you are doing it for, motivation indeed, I'm sure you'll get there ! Well done on your progress so far 🙂 x
 
Hi Sophie

I was in exactly the same position as you 2 weeks ago. My son is just 16. He had beed unwell for a couple of days and I thought he had a virus which I had the previous week. It was so scary the difference in him overnight. We too could have lost him..really scares me to think about it too much.
We were in hospital for 5 days. The first day home was scary, my mind had gone completely blank, couldnt remember a thing they had told us at the hospital.
My savour has been our diabetic nurse, he is brilliant and I can phone him anytime with even the stupidist questions:confused:
Dan, my son, is injecting himself. He went back to college this week. He seems to be coping really well - unlike me!!!
I feel just the way you do...but I am assured it will get better.
take care
Lisa
 
There's a mum who writes a column in Balance - Patricia Debney. She said summat at the end of her column in the latest edition that I thought was mga- important actually and she said 'I've learned this from my son' - he's about 11 or 12 I think. Anyway the words were (with whatever situation we find ourselves in, not just diabetes!) 'We have to evolve or stagnate'.

Which is what I mean of course when I tell people, well you just better get used to it - we had to! - but put SO much better.

And when you think about it, children are really used to evolving as they grow up anyway, aren't they? - but by the time we are adults we tend to forget how to and become rather resistant to it if it ain't our choice ! LOL
 
New diagnosis

My daughter was diagnosed in April aged 9. It all feels so horrible and strange at first. My daughter wasn't that unwell when diagnosed, so could not see the point of any of it and every injection was a physical battle, but eventually you do get into a sort of routine.

Hope you do start to get used to things soon.

I still hate having to do the injections and things and keep hoping she will start to do it for herself but she feels unable to yet and so I am not pushing that point - she's had enough to cope with!
 
Hi there, my son finley was diagnosed in January aged 2 years 9 months. I lost the plot for a while,couldn't get out of bed/leave the house and was in a total meltdown. I spent all day on my laptop looking up worst case scenarios /reduced life expectancies etc. my husband had to take 2 weeks off work and then my mum also took a week off and I was prescribed anti depressants. It is horrendous BUT whilst it doesn't seem like it now, it WILL get better. I have just come back from Orlando for a 2 week holiday - something I NEVER thought I would do. Take whatever help you need and email me anytime xx
 
Hello,

I just wanted to let you know, Diabetes UK runs a Peer Support service for people like you, where you can talk to people living with diabetes 1-to-1 by phone or email. You can phone 0843 353 8600 (lots of evening shifts too), or email through the website at http://www.diabetes.org.uk/How_we_help/Peer-support .

Donna is a parent to a teenager, and there are young people living with type 1 (e.g. Lucy) who might be worth your son having a chat with.

All the volunteers are trained and it's confidential, so it's a good place for a rant as well as sharing thoughts and experiences.

Best wishes.
 
thank you so so so much for the lovely welcome, it means a lot to me.
i went ahead and bought the tagnar hanas book, thank you for the tip, its brilliant, and so much better having the info to hand instead of going through ons of web pages.
and some progress on the needle front, i can now inject merlin with no problems 🙂, i really never thought i would be able to, but what you said , made perfect sense, i had no choice in the matter and i had to suck it up and get on with it, and im actually really comfortable doing them, it will be interseting to see how i react now th next time i have to have an injection myself. merlin has been a real inspiration for me with the needles, im so proud of him. he does all his finger pricking tests himself.
he's had a few hypos, which have been really scary, but straight away he recognised that he didnt feel right, which was reassuring to us as its somehing i worried about, (him maybe not realizing he wasnt feeling to good) i really panicked at first but we dealt with it, he had one today actually, i had hospital appointment (as i broke my leg/ankle in 3 places the other month) and stuidly we didnt even think about taken his bag of stuff with us, with his meters, injections and emergency food, he suddenly went so pale and started shaking and said he was ill, so hubby went to the shop and bought him something to bring his levels back up, i cant beleive we were so stupid to have not taken his stuff with us, that wont happen again, just goes to show how important it is taking his stuff wherever we go.

we are aiming to have him back in school on monday, maybe starting him on half days to begin with, im so scared of letting him out of my sight, but i know i have to

once again thank you so much 🙂
 
This is all very positive news Sophie, you have really made some progress over the last couple of weeks - and learned a couple of important lessons too! I hope things go well as he returns to school. How clued up are his school about his diabetes and what they may need to know to help him manage it, if need be (like allowing him to test whenever he needs to, and take hypo treatments etc.)?
 
Hey

Good too hear how well you are now doing, and the good news is things only get easier and easier as you get used to it in time.

I was diagnosed at age 8 and I rememeber how my Mom suffered, probably a lot worse than me!

Just to wish you good luck and theres lots of people here to help as I am also finidng out too when you need.

He' ll be injecting himself in no time. I couldnt imagine life without it now, its a part of me and Im happy 🙂
 
well done you on the injection front- yep its hard to remember all thats needed - now we have stashes of things in the cars- upstairs etc - I think the main issue was finding something that was hardy and would fit into the meter kit - after many a squashed jelly baby we have put some of those MAOAM stripes into the kit and they seem to be standing up to being squashed into jeans pockets! - as for school is there a care plan in place?- he will need to test in class if he needs to
 
yes he has a care plan in place, but imnot convinced in the schools ability to care for him to be honest .we've had so many issues with the school in general over the years, when my daughter used to go and other issues with merlin, so you kind of loose your faith in them.
he can have a snack in class and test his levels when needed.
it was his first day bacck on monday, and they screwed up big time, i was so upset and angry. matthew (hubby) went in at dinner time to give him/and show thr lady whos gonna be doing it, his injection , and stay taking to her for about 15 minutes and he thought merlin had gone off for his dinner, he tested his levels and was on 3.9 so he needed to eat anyways,
in his care plan it is clearyl stated he must eat straught after his unsulin, the diabetes nurse exlained to them in a meeting we had how important this was, and i also reminded them in a note book.
when matthew left he saw merlin in the playground upset, the dinner lady wouldnt let him go in for his dinner, matthew told her he needed to, but she adamant that he wasnt as it wasnt his sitting, matthew was so angry that he just took merlin over to the dinner hall, when he got home i couldnt beleive it, all this was supposed to have been sorted out before he returned to school, like the dinner ladies being educated, his dinner session being sorted, and the fact hes not to be isolated or made to feel different in any way.
i rang the diabetes nurse and she was so angry aswell, then i rang the school, they were really apologetic, and said the head dinner lady was supposed to have gone through it with all the dinner ladies, and clearly she hadnt, as far as i am concerned this is not good enough, i was assured that they would be educated before his next dinner session and that he would be allowed to from now on pick two friends to go for dinner with him and one of the office girls would walk over with him, i cant beleive they didnt sort this, i even rang on on friday and they assured me everything was in place. its made us loose faith in the school even more so now and any more mistakes we will pull him out.
he hasnt didnt go in today though as he has a stomach bug, hopefully, they will have bucked their ideas up by the time he next goes in,
 
yes I can see why you were annoyed-we had a few hic- ups in the early days-they just dont understand it- to be honest I didnt before H was diagnosed- would it be worth your team giving the school a call in a few days to check how its going- my team were always ok to do this-to be honest all the staff need to be aware not just the school secretaries as was in my case- till I found H had gone offsite for 2 hrs PE lesson -teacher not aware [-mmm I Was told all staff had been informed-] as soon as the nurses rang the school suddenly care plan up in staffroom all staff told etc .I think the school will buck there ideas up now - well fingers crossed
 
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