5 year old son newly diagnosed type 1

[suzyqet]

Hi everyone.
On Friday night, my 5 year old son was admitted to hospital with BM of 28 !! He had Ketones of +4 and glucose of +3 in his urine.
I have been told that we have caught it really early as he only had the excess fluid intake, increased urinating and sudden bedwetting before I picked up that something was wrong.
We have already managed to get him to 'accept' the pre injection BM checks on his fingers, but we are still having really bad issues giving him his insulin. We can cope giving it to him if there are 2 of us to do it, but my partner has to go back to work tomorrow night which will mean I have to give him his night time insulin on my own. :|
Am sure we will get there in the end, we have no choice obviously, but am so scared at the moment.
We have to go back to the hospital on tuesday to meet our support team (due to bank holiday weekend :roll: ) but over the past 48 hours our heads have just been filled with sooo much information my head is spinning. :crazy:
I am really looking forward to getting in my own bed tonight as I am both emotionally and physically shattered.
Anyway, just wanted to say hi and hope to speak to a few of you soon.

 

[Shell1]

Hi I feel for u I really do my daughter was diagnosed 2weeks ago she's 8 with the same symptoms I am still in such shock it's so hard to get my head around.but It does get easier each day ,I try take her mind off the insulin by talking about her day asking questions or saying when we get this out the way we can do something fun together .im still going threw the why me stage why has it happened to my baby and hoping its a mistake .i hope you ok and I promise it gets a little easier every day you will get there and he will get used to the injections in time


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[suzyqet]

Thanks Shell1.
Yes i am in total shock. I keep thinking I am going to wake up and find it has all been a bad dream.
I have managed pretty well emotionally in front of him as I want to stay strong for him, but have to admit, that while he was still sleeping in his hospital bed this morning, I did have a very good weeping session.
It is sooo hard, inflicting pain on my baby. He is going to hate me soon.
How is your daughter coping with the injections? Does she understand what is happening?

 

[Shell1]

She is brill now does it all her self under my supervision the night time one stings so I do it but she getting used to it,when u meet ur team u will be amazed at the support u get and the suggestions they can help with everything.i saw my nurse everyday the first week at home and she stayed for hours answering my questions, write all your worrys down that can help.how is your son coping does he understand they will give u a book that's for children to help with that. Our news let us use the needle on ourselves which helped me understand how Chloe felt and honest you can't feel it at all, think because they fear it that's why it hurts so try not make it a big deal and he will eventually calm down


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[Shell1]

Does he have to have a snack with bed time insulin?if not how bout u doing it when he has dozed off ?


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[Traceylh]

Hi, I also have a 5 year old who was diagnosed in feb, it is a long hard road but you do get there, we have are ups and downs but the way my little girl deals with it makes it that bit easier, hope ur little one is coping ok!
Hope to speak to u soon


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[CambridgeLass]

Hi, my daughter was diagnosed age 6 in December so we are 5 months in. Everything you are feeling is completely natural. I felt exactly the same. Where are we now - my daughter does her pricks herself now and again, she REMINDS me to do her injection, TELLS me she needs a test when she feels funny. She knows if she wants that cake as a snack she will need to shot and DOESNT mind. Kids are AMAZING. I promise you it's much harder for us parents. Its actually good that your husband won't be there as you can begin to feel confident to do this yourself and your son will learn to To have just one person. I was glad of the day home by ourselves after diagnosis, for both of us to do it and know it was possible. Use your support team to the max. There is lots of information, maybe too much, out there. Know that more is known now than even 10 years ago and things will get better. Technology moves so fast. Take each day as it comes. That's very important- every day is a new day. You're not alone and you will all get through this. x


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[suzyqet]

thanks everyone.
I know we will all adjust eventually. He understands why he has to have the injections, he knows what it is and he knows he has diabetes. I think it helps that my mum and brother are both type 2 so it isnt totally new to us.
This morning was a real BIG breakthrough, it was just me and him in his bedroom, I took my time, he helped me do his blood test and wrote it in his diary himself, then I managed to give him his insulin without a fight!! He cried for about 30 secs but it was soon forgotten about. he is getting to the stage though where he is saying he isnt hungry because he knows he has to have his insulin at meal times so i think he thinks, if i dont eat i wont need my injection. Bless him.
We have thought about doing his night time injection once he drops off at night, but dont want him to be too scared to go to sleep so am just going to perservere.
Thank you once again everyone for your support.
Will be interesting to see how we cope when he goes back to school in about a weeks time. :?

 

[MrsDMiles]

Hello my little boy is 3 in June and diagnosed in Feb.
Today I almost made a whole day without crying.
I am heart broken. He is a little star and takes it in his stride.
And I think each day it's getting a little more normal!
Cambridgelass, it's good to hear your positive comment, hope Oscar is like that in a few years x x Danielle x x


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[suzyqet]

Well, today went better than expected.
We even went to a friends house for a BBQ this afternoon and he was a very brave boy. In fact, he loved showing his friends his pin prick marks he has on his legs. lol. apparently they are in the shape of Mickey Mouse?? :wink: lol
He has cottoned on to the fact he has glucose sweets in his hypo kit though. I explained to him what it was for etc. anyway, about 30 minutes later he said he was feelling really poorly and wanted me to check his blood sugar, which I did (10.9) but got really upset because it wasnt below 4. lol. :?
Night time injection wasnt too bad, I did have to pin him down in the end (which I hate doing) but we managed it with no help. So that is 3 out of 4 injections we managed today without needing an extra pair of hands. He is doing so well bless him.
When we got to our friends house, the first thing he told them was that he isnt allowed to run around to much for the next month. lol. He is also not allowed to bounce on the trampoline, so what did he do? Sat in the middle while the others bounced round him. He thought that was rather amusing.
All in all though, a better day than i had thought it would be.
And, like they say, it can only get better.

 

[CambridgeLass]

That's great to hear Time. That's what it takes. I made sure she understood that nothing she enjoyed doing was going to change, she could still do everything... we just slot this in our routine. It's important they feel things won't change and they aren't different from anyone. Your son might like to tell his class, or if he's shy you could ask to go in with him. This was very helpful for my daughter. She told her class about what happened and took her kids diabetes book. So the children have an idea why she has to go off before lunch and why sometimes she may have sweets. At this age kids are interested and caring. To begin with one of us went in at lunchtime to do the injection, after a while the school had training and a staff member now does it for her. Next time you are in clinic ask if there is a local support group.
Danielle, I'm sure Oscar will be fine when he is older. Kids adapt so well and don't know different. Us mums need the support more!! x


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[MrsDMiles]

I second that Cambridge lass.
I'm still a flipping wreck x x


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[suzyqet]

Well, that is day 2 over with. Phew!
We were at the hospital today to meet the support team. We have a lovely diabetic nurse and dietician. Callum is already excited about their visits later this week. lol.
He had his first hypo today. Nothing bad, just his sugar went down to 3.6. He thought it was great. 3 sweets, 10 mins rest, another blood test, then 2 biscuits. lol. It happened in the best place too, the hospital. lol. I was very good not to panic aswell. I was nice n calm. rofl. Well, on the outside I was.
We were given much more information today, a sticker chart, some more child friendly books etc. Our heads are still spinning with all the information, but I think we are starting to understand it more now. The nurses at the hospital were very impressed that we had everything we needed for his hypo. They went off to get supplies and returned to find us feeding him his sweets. lol.
We have also managed to get 3 stickers on the sticker chart today. 2 for not fighting whilst having the blood test done and 1 for not fighting AT ALL when he had his insulin at tea time. I am so proud of my little soldier.
Are there any groups/places I can go to find other parents with similar aged children in the area I can get together with? Would be so nice for not only me to get out and talk to parents face to face who are having to cope with the same things on a daily basis, but would also be good for my son too to mix with other children who also have type 1.
Having said that, when I spoke tohis school today, apparently they have another child starting in September I think who also has type 1, so although they wont be in the same year group, at least they will know that the other one is there too.
Anyway, now the little ones are tucked up safely in bed, I can stop being an overprotective mother who wont take her eyes off her son and relax. Dont think it will be long before I drop off to sleep. lol.
Thanks everyone for your support on here.
You have been great and it has been really good to hear other peoples experiences too.
Thank you again. x

 

[Sammysoldier]

My 4yr old was diagnosed 3 weeks ago and we went through everything you have put up , and as every one says it will get easier . My son doesn't even cry at the injections any more we made funny names up that change each time he has them and he says them and laughs ( bum , smell , Geoff ) lol . What area are u in ? We are under Kingston hospital and they have been amazing . Hope it keeps getting better for you as I'm sure it will .


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[suzyqet]

that is good to hear Sammysoldier.
I am in Hampshire under QA hospital.
I know it has only been a few days, but I HATE pinning him down to do his injections when he puts up a fight.
The funny thing is, he has become very clingy with me since Friday. He cant bear me to be away from him. He HATES daddy doing his injections. Only mummy is allowed. I thought he would've hated me by now. lol.
I am also now eating exactly what he has. If he can have it, so do I, if he cant, then nor do I. He thinks that is fun. lol.
I am going to be a nervous wreck when he goes back to school on Monday. I am going to have to force myself from not phoning the school every 5 minutes to make sure he is ok. At least I will see him at lunch time, even if it is to give him his injection. lol

 

[Sammysoldier]

Sam is still at nursery so the wife is staying with him as they won't test or inject as they are short staffed he starts school in sept so will see how they react . We have found that he tends to go more for his mum doi g the injections but doesn't have a problem if he's with me out and about , it's just a steep learning curve that as every one says will take time . U will probably find after the first week back at school it will be so much easier , back to a little bit more normality , that's what we found .


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[ConradJ]

Hi Suzyqet,

Firstly, my sincere and heartfelt empathies: I was 6 years old (1976) when diagnosed T1 and remember the whole episode like it was yesterday.

Unlike your son, I was diagnosed at death's door and hadn't eaten / held down a proper meal for a significant period of time prior to diagnosis... I had lost more than half my body weight and was described as a victim from Belsen by my (late) grandfather.

I appreciate this is slightly off-track, but I hope my experience will give you hope, strength and inspiration...

Around three days after diagnosis, I was allowed to come off the dialysis/heart monitors/drips and was directed to the meds room at the top end of the ward for my first breakfast. There, in the meds room were two nurses; I recall that the ward sister took the following line (remember, this was 1976!):

"Now, you have an illness that means you need to take some medicine before you can eat. Unfortunately, this medicine can only be taken by syringe. While you're here in hospital, we can do your injections for you or you can do them yourself. Remember, though, that we will not be able to do them for you when you go home; do you want me to do it for you now?"

My reply was, "No, I'll do it." She handed me the syringe and I held it in my hand and stared at the needle (5/8"). I pinched my leg and held the syringe at the right angle, and then I relaxed, letting go of my leg and resting the syringe in my hand.

"Remember," the sister said, "you can't eat unless you inject..."

They told my mum that it was the fastest injection they'd ever seen; I had pinched my leg, jabbed the needle in, injected the insulin, thrown the empty syringe across the floor of the meds room and was half way down the ward heading for the breakfast table before they could say a word!

Apart from the one time I was admitted into hospital in 1978 for severe hypoglycaemia and a couple of days when I was ill with flu, etc., I never allowed anyone else to inject me (well, OK, I did allow two school friends to try it - never again!!!).

I appreciate our circumstances are very different, but I do believe that it will be possible for your son to take ownership of his injections and BM testing (under supervision, of course!) from quite an early stage - I'm sure there are other T1's who were diagnosed at 5 who can testify to similar experiences with doing their own from that age... the secret to your success will be to find the right incentive to trigger his willingness to do his own.

This will be for all your benefit: not only will you not have to fight / pin him down (with all the emotional guilt/stress that comes with that), it will enable him to engage more directly with his new life AND be sure that he is having his injections in the most comfortable way... having someone else do them for you can be really painful and NOT because you are doing anything wrong, it's just that sometimes, for some unknown reason your son's skin may be more sensitive in one place than it is in another and so enabling him to take control ensures he finds the place that's 'willing' to accept the needle at each injection time.

That's how it's always been for me - and that now includes inserting cannulas for my pump.

You may also find that buying a bottle of Anbesol Liquid (yes, the very same used for teething infants) may help: use a dab to numb the injection site shortly before injecting. It's not a long-term solution, but it can help to ease in the whole process of sticking a sharp needle into one's body, which, afterall, is not a particularly normal thing for people to want to do.

Three points to make concerning his schooling:
1) Make sure that all his teachers and teaching assistants, etc., are aware of his diabetes AND how to treat hypos,
2) Give them a supply of emergency sugars (e.g. Dextrose, HypoGel, etc.),
3) Engage with the parents of his friends and invite them around (with their children) to do an education session on his diabetes - kids love technology, such as BM meters, etc., so will find that fascinating, but they can also learn to spot the signals for hypos (such as the dazed and confused look, draining facial colour, etc.), which can be of immense help in the playground/on the playing fields.

Good luck and very best of wishes to all of you.

Conrad

 

[Tanbal4]

Hi
I am so sorry to hear about your son. My son Philip was diagnosed last November, and I still find it hard to accept. Philip is 12, and can do his own injections at school, but still likes us to give them to him at home. We give Philip his long acting insulin at tea time, along with his nova rapid, which might suit you better. So long as its given the same time each day we were told that is fine.
It will take you a while to get your head round things, but you will find it does get a bit easier. There is an awful lot of info thrown at you to begin.



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[suzyqet]

Oh my. What a mixture of emotions today has been.
My son had his 2nd hypo today. Again, just before lunch. So, they have now dropped his morning dose by 1 unit. The rest of the day his bloods have been brilliant not going above 10 !!!! :clap:
Also, he let daddy do not one, but TWO injections today! Yipee!!! :mrgreen: AND he is now counting to 10 with us. 4 stars for his injections went on his sticker chart today. I am so proud of my little boy. He seems to have grown up overnight.
He has chosen a wrist band which we are going to order him. It is a special olympic black one. I asked him if he knew what it was for and he said "I know, its cause I have got diabetes and if I fall asleep people need to know whats wrong with me" (was difficult not making that into a weepy moment, lol).
Also, I left him on his own with daddy today for a couple of hours while I spent some girlie time with our 9 year old daughter on our own. OMG!!! I was a nervous wreck. I gave daddy a list as long as his arm (even though he has been with me to most of the appts. lol), Strict instructions on what he can and cannot do, can and cannot eat. Told our son to be good and to get daddy to call me if he needed me. I found myself texting daddy after about 15 mins to make sure everything was ok. What am I going to be like when he goes back to school?????? This was the first time I had left him since being diagnosed on Friday. I have never been an 'overprotective' mother, is this normal??? I have a feeling the waterworks are going to flow when I drop him off at school for the first time since being diagnosed. Yikes!! :?

 

[Just Laura]

Hi Suzy,
Just wanted to say hello. I'm a mum of a (fairly) newly diagnosed 5 year old and she still amazes me every day.
What you're feeling is perfectly normal - or pretty much the same as I felt, at least. But, just 4 tiny months on it is much, much easier and there are no spontaneous bursting in to tears moments! Life is different but certainly no worse. Hang on in there.
Much love.
X


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