How long did it take to get a pump after diagnosis?

[laurar49]

Hi their my 11 year old son was diagnosed with type 1 around 5 weeks ago... it's been a a lot of ups and down since the diagnosis he's having hypos and we just don't understand why.. he's started refusing meals he's sick of giving himself insulin and generally isn't the boy he once was it's tearing me apart as a mother.. his diabettic nurse did say eventually they will discuss isulin pumps ( nhs funded in south Yorkshire area) as anyone had experience of this? How long did it take? Is their anything I can do to push for this just so he can start attempting to live a normal life again as he's so depressed about it and feels like he's not part of anything anymore
Any advice would be great
Thanks in advance
Laura

 

[tim2000s]

Hi @laurar49, I've moved this to the parents/children forum area as you are likely to get a more helpful and focused response there.

 

[laurar49]

Yes he's asked for one, he's feeling thr odd ball having to go to special rooms in school to inject etc, he's not wanting meals because he has to inject he broke down emotionally today and is finding it extremely hard ... the diabettic team spoke to him about this when he was first diagnosed and she told him it would give him a better chance of flexibility do its stuck in his head and he's watched videos etc on you tube. He realises this isn't a magic solution but would make him less indifferent to his friends having to sneak off and do his injections etc.. his diabettic nurse is coming out tmorow to speak to him as he's getting g depressed so I'll ask again tmorow

 

[Snapsy]

Hi @laurar49 - I'm not a parent but I was a newly-diagnosed 11 year old. It was so tough, but my parents were - and still are - so, so supportive.

Your son has a great mum on his team. Hang on in there, and I hope it goes really well with the nurse tomorrow.

5 weeks in it's still all very new - I'm sure over time he'll find ways to deal with it all with your support.

Hang on in there!

 

[laurar49]

Thanks snapsy
I'm sure he will adjust to this as it's still very early I just want the best for him " to try and make him feel normal again" I wish I could take this all away for him and have it myself but I can't so I'll be their every step of the way, every hill we have to climb we will do it together
Thankyou for your support x

 

[noblehead]

@laurar49, take a look at the following website, it contains information and advice on insulin pumps and how to obtain one on the NHS, somewhere on the site it mentions a support group for children who use a insulin pump to manage their diabetes:

http://www.inputdiabetes.org.uk/

Hope all works out well for you and your son. Best wishes.

 

[catapillar]

Hi @laurar49 sorry to hear your son is struggling.

I'm not a parent & I don't know what it's like to have diabetes as a child, but one of the things that stood out to me in your post was you saying your son had to go off to a special room to inject. I can see why he might find that a bit isolating. Is there any reason why he can't just inject at lunch with everyone else? He might feel shy about injecting in front of others, but I've never hidden it away and it's so so rare that anyone even notices (and definitely no one has ever reacted). If he is shy a way to ease him into it might be to invite a couple of friends round for dinner and then he could do the test and injection at home where he is comfortable but in front of a couple of nice lads who are his mates so that, if he does decide to inject in public at school, they will have seen it all before.

 

[laurar49]

That's how his school works they are the rules he also has to check his bloods in private room, he's sad frustrated and generally fed up!!! He's started withdrawing from his friends since diagnosis he's constantly fearfull of highs n lows he's like a different child I just don't know what to do to reassure him more than I have .. this is why I've called the nurse in tmorow to try and provide maybe a different outlook on things for him.. I dunno I'm clasping at any straw I can pull right now he made a statement "I don't fit in or belong anymore " and I'm seriously worried for his mental health right now but he refuses to talk to anyone just breaks down and crys n will not let you near him untill he has calmed down :-( x

 

[iHs]

Yes he's asked for one, he's feeling thr odd ball having to go to special rooms in school to inject etc, he's not wanting meals because he has to inject he broke down emotionally today and is finding it extremely hard ... the diabettic team spoke to him about this when he was first diagnosed and she told him it would give him a better chance of flexibility do its stuck in his head and he's watched videos etc on you tube. He realises this isn't a magic solution but would make him less indifferent to his friends having to sneak off and do his injections etc.. his diabettic nurse is coming out tmorow to speak to him as he's getting g depressed so I'll ask again tmorow

Hi

twice daily insulin is still available and no child of mine would be using multi injections unless they wanted to control their bg levels that way. Pumps are ok but they don't give everyone a normal life.......just a slightly different one

 

[laurar49]

Yes the school have been very supportive and the nurses have been into the school and he's got a cage plan in place... however as you said he has to go to a a meeting type room to have his insulin and to the matrons room if he has to take his bloods.. alone
He has a hypo kit which is kept in school at all times

 

[himtoo]

Hi @laurar49
welcome to the forum and really sorry you need to be joining us with your son's diagnosis- if it helps any I would take it away for you and your son because I understand the pain you are feeling -- i watched my parents go through it and at the time it was terrible for all of us but ....... after 43 years my parents are still here and love me very much and I am still here too -- and I love them very much

( time will smooth out the horrible feelings happening right now )

and I cried my eyes out loads of times in the first 6 months as a 14 year old -- so he is completely normal in my opinion

take care and keep posting !!

 

[laurar49]

Hi

twice daily insulin is still available and no child of mine would be using multi injections unless they wanted to control their bg levels that way. Pumps are ok but they don't give everyone a normal life.......just a slightly different one

I don't even know about twice a day insulin this is all a very new thing to me .... I'm going to have to research and learn a lot

 

[laurar49]

Hi @laurar49
welcome to the forum and really sorry you need to be joining us with your son's diagnosis- if it helps any I would take it away for you and your son because I understand the pain you are feeling -- i watched my parents go through it and at the time it was terrible for all of us but ....... after 43 years my parents are still here and love me very much and I am still here too -- and I love them very much

( time will smooth out the horrible feelings happening right now )

and I cried my eyes out loads of times in the first 6 months as a 14 year old -- so he is completely normal in my opinion

take care and keep posting !!

Aww thankyou

 

[laurar49]

Now all this has come up with his mood deteriorating and him feeling excluded I think the care plan at school may need to be adjusted

 

[catapillar]

Diabetes uk say that children should be allowed to inject in a private room if they want, or in public if that is what they want - https://www.diabetes.org.uk/Guide-to-diabetes/Schools/School-staff/Treating-diabetes/ - not allowing this would be on pretty thin ice with regards to disability discrimination under the equality act, especially if it is causing your son to feel different in a negative way.

 

[Juicyj]

Hi @laurar49 - Welcome to the forum. Can you talk to his school about how he is treated there ? They have a duty to manage this better, being sent off to another room to test and inject is not acceptable, you can try going direct to the head or try the Chair of the Governors, either way it needs to be managed better by his school, this situation needs to change as it is making him feel isolated and it sounds like the root cause of his depression. It sounds like he is grieving too from his diagnosis, it's a lot to take in and feeling different from your friends is hard. I'm sure other parents will along soon to share their experiences. He will get a pump but in the meantime learning to accept the injecting is really important for him as it will show your nurse that he can manage his condition. Have you contacted JDRF yet too ? They do meet ups for kids, this will help him make new friends and feel more accepting about having type 1.

 

[laurar49]

Yes I do think his care plan in school is going to have to be re looked, to be fair when I went into school for thr meeting with my son and the diabettic team I'd just done 4 12 hours night shifts and I was an emotional wreck crying when they told me the staff in school wernt allowed to administer glucagon in the event of anything happening so I looked a complete mess and had the diabettic phscologist on the phone to me the next day offering me her services which made me feel a complete failure! No I've never heard of the JDFR
Maybe this is something I'll ask about... thankyou

 

[iHs]

I don't even know about twice a day insulin this is all a very new thing to me .... I'm going to have to research and learn a lot

It's not your fault of course but before multi injections became the new way to control bg levels, many diabetics used twice daily pre mixed insulin which meant an injection in the morning before eating breakfast and then another injection before eating the evening meal. The drawback a bit was needing to eat a snack mid morning about 10am, then lunch at lunchtime, a snack about 3pm and then home again. Your son can lead a decent life on twice daily so do please mention this to the nurse and don't be fobbed off with the bolus basal way is the best. Your son will need to keep the carbs qty the same but hey..... pizza can still be enjoyed as long as not too much is eaten in one go but even if a large carb meal is going to be eaten, there's always a bolus pen of 1 or 2 units that can be used to deal with special occasions.

 

[laurar49]

So the diabettic team have been out to see my son today and she wanted to refer him to an emergency phscologist but he flatly refused so they are upping his visits to twice a week from the diabettic team and she's hoping to push for him and omnipod for the end of april!! She's given him a dummy one today that's stuck on his arm to keep on for 3 days to see how he feels about it...
Finally have a slight smile back on my sons face
So fingers crossed

 

[Snapsy]

Yay to that smile, @laurar49 ! And remember that although it's early days and a steep learning curve, you and your son will absolutely get there in terms of coping with it.