Complications

So sorry to hear your news, Sarah, you are certainly going through such an emotional roller coaster, my heart goes out to you and your family. Hopefully your son will have a wake up call regarding his diabetes management and taking care of himself. It is so hard for younger people, having a life long condition like type 1 and just wanting to be like their peers, can be so difficult, it's an unseen medical condition. If he can talk to someone or write in a journal/diary that may help him and if he can just take little steps at first, he should see the benefits in the long term.
I know my friends son, who is 15, tells lies about his insulin intake and his readings are all over the place, he doesn't want type 1.
I hope the outcome for you all will be a more positive and happier one and please make sure you take good care of yourself X

Is he under a gastro person and consultants for all his care?

Has he got an insulin pump?

Does he work and cope with "normal" social activitys?

GP- if on face book.. have a look at giftuk. Gastro intestinal failure uk. Many people there. Also diabetics.

I hope this may give him a wake up call. GP is not easy and he needs the best hospital tertiary care for this. A GP can refer him to tertiary hospital if he is confirmed. Addenbrookes is, I think Leeds. There are a few with more knowledge than secondary care hospitals.

Getting frustrated with diseases and life is going to be quite difficult. GP is tough. Non GP people really can not conceive how difficult it is to live with. However, people do.... and there are happy people as well as those that really go through the mill.

He is on the right meds for GP to start off with. So this is indicating that GP is cause. I take it that he's had the up and down cameras?

Thing to remember with tertiary care.... and important!

If the hospital refer you, then when prob has a solution you will be sent back. This is not a good long tsrm solution.

To get ongoing good care you need a GP to refer you.

Depends though on whether you think your local hosp will be good enough for basics of GP. There is one lady that uses two hospitals...

I would suggest that you try and get diabetes care to same tertiary hospital or ask if 1) will they write to current consultant
2) the need for a pump is essential for GP. However if DKA is involved then some hospitals do not recognise how blooming bad GP affects levels.
So they just refuse pump as you have said "un compliant".

Personally, I would be asking for diabetes care to also go to GP hosp if it is diagnosed as he stands a chance of them having MDT meetings then for a combined care and action.

This is why I got all my care under one tertiary hospital and got a Professor for my cancer care. I had **** with diabetes and operation 1st time round at diff hospitals. Same **** again even tho all at tertiary hosp but got better care.

GP knowledge is poor. It is a struggle and patients are wrongly labelled non compliant. I am so sorry that it looks likely that your son has this.

Please keep strong, both of you. You need to try and find foods that do not make sick or harm bowel and bloating pain.
If you can really log this down and really do everything ref bloods etc each day and take to appt then you will not carry that "un compliant" label....you tend to find that although notes are sent eventually. Consultant wont read them. He will start from scratch.

Even write down in your (keep emotion out) instances of life in past year with DKA etc.. just brief bullet points and give tertiary care consuktant the brief.

They do read and do appreciate the patient view so long as blame to their colleagues and wmotion is removed.

Ie do not phrase ... the nurses were told I was going low and did nothing".... this lays blame... "staff were advised however my body reacts very quickly and a hypo occurred".. is very much taking blame away... although the anger I feel about hypo's and nurses is still there it is reduced.

This leass to last bit... anger does show in our faces and talk when we are getting no where.... it comes from our being scared and fearful and not getting help..
any term of anger will get less help... you are doing right and you need to explain fear, scared, tired, exhaustion and need of help... its so hard but you need to both keep going....

As a Mum you are going to need to keep very strong and many GP people cannot believe how cruel others are around saying "yeah, yeah I've been sick on vodka etc".. family not understanding and many fall out with friends. Nobody can really, really understand the pain, the sick, the bowel, bloating etc. It is an unseen devastating disease.

Thank you for update.

All I can really say is that I hope that you can get answers now quicker.

Do make as much detail about bloods, foods and even motions, and sickness.. etc.. the more absolute records you can give the better...

Dont know if you will be able to view this but it gives an idea of detail I had to record...

E

Sorry about your sons problems and you having to cope with them as well. What i would recommend and i have done is that you change your sons care to the Royal London as a larger hospital they will be able to cope with the diabetic and mental health under one roof, you can do this b going to your GP and asking him to send you there as you have a right to choose were you would like your care. From the age of 18 i have had eye surgery and laser treatment, ops on both had and elbow, end stage renal failure, hospital admissions and a kidney and pancreas transplant. All the time having mental health problem, I change my care from durham hospital to Newcastle as i was near a nervous breakdown. This happened as Durham hospital were making me feel as if i was banging my head off a brick wall and even got to the stage where i told the consultant that i was going to put him through the window( i have never been violent in my life). So i went to Newcastle and all the information they sent through was a a4 sheet of paper, i had three massive files at Durham i spent a hour with my new doctor and had to go back the next week for another hour. He said it was my choice of who i wanted to treat me i stayed at Newcastle and within 2 further weeks he had sorted my insulin pump out which Durham could not do. I still had some care at Durham but Change it all to Newcastle as they were not sending my new doctor any letters. It was the best thing i ever did i got mental health team so see me all the time and still see them now and my new doctor pushed for met o have a pancreas and kidney transplant( which i had in 2015). The transplant went well but with my sugar levels returning to normal range the damage the diabetes caused came to light all my nerve endings are not working and cause constant pain and i now think if i had went to Newcastle at 18 this would not have happened. I think you and your son deserve the best treatment and the larger the hospital may fund a insulin pump which will mean i small neddle every 3 days. Good luck and i hope this helps both off you