New to all this

[mummycat]

Hi

My 10-year-old son has just been diagnosed, no treatment yet as still v early stages.......has anyone any recommendations for good explanations to offer him for this??
he is very hospital and needle phobic after a serious illness aged 2 and is freaking at the thought of injections
I am a bit pole-axed myself. any advice would be oh-so-welcome

 

[hanadr]

I would suggest you contact Diabetes Uk
diabetesuk.org
They have great packs and advice for kids, plus they do group activities, so they don't feel alone.
Hana

 

[Katharine]

I think a ten year old will want to know how much the SAME everything is going to be.

He will still play with his friends, go to school, go on holidays, eat birthday cake, get told to tidy his room. After a while he will be able to go to sleep overs at friends houses and go on school trips. A lot later he will be able to do pretty much whatever job he wants, even if that is being a cowboy or a policeman or a vet.

For now, he will be learning a lot, but he will soon get home and will be doing the same as usual.

For now, what he doesn't realise, is the sheer amount of learning, effort and time that YOU are going to be putting in.

You will get through it. If you have supportive friends it would help if they helped with housework, ironing, meal preparation and looking after any other children.

 

[hismom]

hi,
it may be worthwhile to let him see the pens used for the injections. I too have a child who is terrified of injections and had never had a stay in hospital until this. When he was in hospital they wouldnt let him come home until he was doing his own injections. We are now 4 months in and he just does them as if he has all of his life. If your son is like mine he also teases the girls a little bit if they comment because they are squemish. He will get used to it, I wont say he will like it but life does return to normal eventually.



steph

 

[mummycat]

thank you to everyone.

Can anyone suggest which if any of the following list are things I should worry about, as they're all symptoms/behaviours he's displayed in the last few months which I am now wondering about as in are they related to having diabetes. that's apart from the obvious thirst, excessive wee-ing, weight loss and blood sugar high when they did a finger prick.

1 occasional bedwetting and wetting underpants/trousers in mad dash to get to the loo (he is v embarrassed about this and has begged me not to mention it to the doctors)

2 loss of appetite on some occasions and excessive hunger on others

3 being v tired sometimes

4 going v excitable/active in the half hour after a meal

5 bad behaviour, being aggressive and also coming out with really silly random off the cuff remarks (this has got him in trouble at school for not concentrating and disrupting lessons)

6 feeling sick and/or faint for no apparant reason soon after eating especially if he's eaten v sugary food - I have stopped him eating sugary stuff like sweets/chocolate/choc biscuits etc because of this

he usually has a good appetite and eats most things - likes fruit and veg and eats proper meals but like all kids also likes his sweeties

Because he was so ill when he was little I do have quite a well developed instinct where he's concerned and it's twanging like fury - sorry if anyone thinks I'm being funny but I know some mums will know what I mean.

We are still waiting for full test results and I am worried about what we are going to find as the initial diagnosis is a provisional one - the GP did not seem to think it was too serius but i don't know how much they know about diabetes. is it important to see a specialist earlier rather than later???

 

[Theunicornlady]

Welcome to the forum hon. Can I get this straight, the GP did a blood prick test and said "oh looks like he has diabetes". Was your son referred straight to the hospital? Did the GP test for Ketones? Although we cannot diagnose, the symptoms you describe are similar to my daughter. She was only just 10 at diagnosis. She was getting up several times a night to relieve herself for weeks before D day. She was tired, lethargic, unable to concentrate, constantly complaining of "lady-pains" which we now know was probably her pancreas packing up. She was incredibly thirsty too. Her mood swings from good to bad, but that could be because she's a pre-teen.

With regards to explaining diabetes - the best explanation we were given was in a book at the hospital. It described insulin as being the key that unlocked the cells to allow glucose into them. Its one of those essential requirements for a healthy body. We were told injections were the norm, but we didn't know about pumps then. Our diabetes service is reluctant to put my daughter on one, but if your son is diabetic, it may be more prudent to put him on a pump, given his phobia.

Let us know how you get on

 

[Jen&Khaleb]

Hi there,

Welcome to the forum. There are lots of Mums and Dads here these days.

I think I just wanted to put your mind at rest a little and say that the list of things you are worried about are all diabetes related and with improved glucose control they should all settle down. In saying that ....

I do think it is important to be open and honest with the medical team about all concerns, no matter how embarrassing the problems may seem. Your son is at a difficult age but I think I'd be very matter of fact about diabetes and what it is and how it is treating.

I can't really comment about the needle phobia as this has never been a problem for me. Even though it is my son who has diabetes I can quite happily prick my own finger or stick a needle in myself. Are you able to do this in front of your son to put his mind at rest that it is not really painful?

I hope you are getting some treatment as I always find it hard to read about people getting a diagnosis from their GP and then waiting days and weeks to see a specialist. Your son already has symptoms and I can't understand why immediate treatment isn't offered. At least once he's getting some insulin the water works problem should resolve. Bed wetting is a very common symptom especially for kids who get so exhausted getting up all through the night drinking and drinking and drinking.

All the best, Jen.

 

[SophiaW]

All the symptoms you mention in your list are most likely to be diabetes related, we experienced all of those apart from number 5 but different people handle stress and being unwell in different ways so it might likely be related to his diabetes. If you haven't seen a diabetic specialist I would ask for referral immediately. With those symptoms I don't believe treatment should be delayed and if I were you I'd want the advice of a diabetes specialist not a GP who may not be very experienced in managing diabetes.

I can't offer any help with needle phobia. We were lucky that our little Jess just accepted what had to be done and has never complained. If it were her brother it would be a totally different story, he definitely is needle phobia. I'm sure there must be help and advice available from diabetic nurses who must have encountered this with other children.

If you haven't already been referred to a diabetes specialist I would strongly urge you to push for this.

 

[annettekp]

Hi

Hopefully you'll have a response one way or the other soon.

We were given packs all about diabetes with child friendly stuff in it from the hospital but as my son is only 20 months he won't find them useful yet. He was diagnosed almost 3 weeks ago.

With regards to the phobia I can't give much advice except that the pens that are used don't look scary and the needle is very tiny.

But having spent a week in hospital next to a newly diagnosed 10 year old girl who hated needles I can tell you what not to do!

DO NOT say to your child "if you don't stop this nonsense I'll put you in a home".

DO NOT allow visitors to come in eating chocolate and say about your child "its ok X won't mind" and then wonder why she throws a hissy fit because she wants chocolate.

DO NOT tell your child they won't be allowed to come home and that you don't want them if they won't 'behave' and have their finger pricked.

Honestly I heard it all! If it hadn't been so serious it would have been funny and as it was I just felt so sorry for the wee girl, who was genuinely scared.

Good luck

Annette

 

[Jen&Khaleb]

Far out! What sort of parent would say that sort of stuff????

Didn't you just want to tuck the kid under your wing and take it away?

I heard some pretty shocking things that nursing staff said to a teenager newly diagnosed and found it really hard to listen to. I did have a chat with the parents when the nurse was gone and let them look through my stuff and records to see what diabetes looks like in the real life. The kid was scared and I think found some comfort in seeing how easily Khaleb was with the injections and finger pricking helped. They probably also saw me tell the staff that the dose of insulin they wanted to give Khaleb was not appropriate and I refused to oblige. The doctor backed me up later and explained that I could work out dosages myself.

Jen

 

[mummycat]

thank you so much to everyone who's taken time to read this and post a reply, they have been very helpful.

sorry not to have been clearer from the start - where we are is that I took my son to the GP cos I was concerned about the various symptoms he has been showing. she did a finger prick test in the surgery which showed a reading of 9.8. this was in the late afternoon before he had had an evening meal although he had eaten a toasted buttered muffin (bread not cake) about an hour before as his home from school snack.

she sent us for a full fasting blood test and we are still waiting for those results. am I right in thinking that if that shows a blood sugar of over 7 they will definitly diagnose diabetes based on that and his symptoms? and that it will be Type 1 diabetes? I have been reading a book on childhood diabetes from the library......

I just don't know what to do in the meantime and am trying not to worry myself sick and beat myself up over not having realised earlier something was wrong if the diagnosis is confirmed.

and I am trying to think what I need to tell the GP or ask if it is.

my son is being quite laid back about it so far, I got cream from the GP to numb his inner elbow for the blood test which worked oK but he was rather alarmed by the - to him - large amount of blood they took - three syringe fulls. he was v nervous before the blood test and asked several times if the cream was the same as the 'magic cream' they used to use to numb the back of his hand to put a cannula in many times when he was so ill as a little one - that never worked v well and is where the needle phobia comes from. I told him it was much more effective and was for bigger boys, as they could only use baby cream on babies, and he seemed reassured, especially as it did work.

he knows we will have to go to the doctor again when the test results come back and has asked several times if she will prick his finger again, cos to him that really hurt. he has also asked if he will have to go to hospital, and I've had to say I don't know. it depends what the tests show. I think if we do have to go to a hospital he will find that hard.

so will I, especially as I promised myself after he finally got better when he was little that I would never again let anyone medical do anything that hurt him cos I can't face having to help hold him down or anything like that. not so easy with a big strong 10 yr old, either. I dread being in that sort of aituation again, where junior doctors or nurses turn out to be less expert than you would like - I did at one point refuse to let a junior doctor who was struggling to get a cannula into a terrified little boy to carry on, and insisted they get someone who could do the procedure better but it was v traumatic. I was so frightened and angry myself I threw a big fit and told the man he should go away and practice on guinea pigs before touching children and that my vet had never caused my horse as much trauma as he had my child and he should be ashamed of himself. please I don't want to go there again.

sorry for the rant. it is difficult to discuss this with my husband as he is I think just as scared as me but more of the long term implications whereas I know it is me who will have to deal with the immediate concerns. which is why I need people like yourselves to talk to.

thanks for listening.

 

[SophiaW]

Just to reassure you that the needles we use to inject insulin (if your son is type 1 and needs to inject) are much smaller and finer than the ones they use to draw blood. Jess doesn't mind the insulin injections at all, she barely feels them. Initially the finger prick tests took her a while to get used to, but their fingers do toughen up with time and now she doesn't mind the finger prick tests at all, actually quite often she will do her test herself without being asked to so that just shows how much she has got used to it. The diabetes nurse did tell me that when we were first struggling but I didn't believe her, I never thought we'd get to this stage but we did and fairly quickly.

Annually Jess has a diabetes review where bloods tests are taken for various testing, she hates that and it's quite a challenge for her to overcome her fear of needles on these occasions. She also had bad experiences when she was younger with them trying to take blood very unsuccessfully making it a long awful ordeal for her. For the annual blood taking we offer to treat her to a new toy if she can be brave and get through the test. Thankfully we've found a nurse in the adult section who has a knack of getting blood from Jess without a huge ordeal so we ask for her each year now and it's made things a lot easier for Jess. The staff at the children's ward were terrible, I never want to go there ever again.

I don't know if they will diagnose your son as diabetic. When Jess was diagnosed her readings were off the scale they were so high. You may have picked up his diabetes very early which is a good thing, or he may not be diabetic.

If they need to do a finger prick test on your son again, check that the lancet is set to about 1. You can adjust how deeply the lancet pricks, if they had the lancet set too deep it may have hurt him more than necessary. But initially it does sting a little until you get used to it.

 

[Jen&Khaleb]

If the hospital lancers are anything like the ones here in Australia, they do hurt. The ones in the hospitals are not reusable or adjustable and are made for adults. If you have to do a lot of finger pricking it is better to buy one of the good brands (I use a soft clicks) and take it with you to the hospital. Any time I go to the hospital I take my own stuff. Even the test strips they use in the hospital need about 5X the blood of my meter.

I hope you get the blood test results back soon. One way or the other you should at least have some answers. If it is diabetes you certainly sound like you've caught it early. Khaleb's blood sugar was 86 on diagnosis.

Fingers crossed for you, Jen

 

[mummycat]

Well it looks as if I may have been jumping at shadows - I phoned for the blood test results again today and they were finally back and all are normal

which leaves me wondering what is causing these symptoms, as since we first went to the GP he has had two more instances of feeling sick/dizzy for no obvious reason.

so I guess I will make another appointment and talk to her and see what she thinks.

or, with my paranoid guilt-ridden mummy head on, is it possible he is in the very early stages of developing diabetes and things may get worse re his sugar levels? :?: :?:

thanks so much to everyone who bothered to read my posts and respond, it was so helpful having this board to vent on and find out info from people who really know what it is like having a sick child. but please don't take this the wrong way if I say I hope this is the last you hear from me, and best wishes to all of you and your children.

 

[hismom]

hi,
just a silly thing. See if you can get them to do food intolerance tests. They can cause a lot of the things you list.


steph