Complications

[Sarah-70]

Hello
My Type 1 son was a teen when diagnosed 9 years ago and a 23 year old now. I'm absolutely terrified about what is happening to his health & I wonder if anyone has experience of what we are going through?
He has always struggled emotionally with his care which has resulted in constant past high blood sugars & hospital admissions with DKA. We are now faced with the fact he has neuropathy, likely gastroparesis (he's having a gastric emptying scan soon) and just found out yesterday he also has diabetic maculopathy for which he is being referred to hospital.
He has good days & irregular bad days/weeks with the suspected gastroparesis & some of the bad have been terrifying. As his mum, I hate seeing him suffer at such a young age & am truly finding it hard to 'keep it together' especially after dealing with my daughter's cancer diagnosis last year (she's doing well & in remission now).
Any help you can offer in finding support would be much appreciated. Thank you, Sarah

 

[Robinredbreast]

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

 

[donnellysdogs]

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.

 

[Sarah-70]

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

Thank you. I have hoped so many times in the past with hospital admissions in DKA that it would be his wake up call but it seems more & more likely he has deep set emotional issues that makes everything more of a struggle.
I'm hoping our team will take all this more seriously as I'm sick & tired of seeing the words 'non-compliant' on his medical records. It's such a cold insensitive statement when I'm positive that help with his emotional state & needle phobia would help him.
I'm trying to stay strong & look after myself but I'm just exhausted with worry. Hopefully the only way is up from here x

 

[Sarah-70]

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.

Hello
He is under the gastro team at our local hospital but he will soon be having a gastric emptying scan at The Royal London so am unsure whether he will be allocated a gastro consultant there or if we will be kept at our local. We are also waiting for an appointment at our local hospital for his maculopathy so will be under a consultant for that too.

He doesn't have an insulin pump, I fought years ago for him to have one but our consultant just wasn't interested. I really believe if he had one, we wouldn't be in this position now.

He does have a job but is currently signed off until mid September. He's ok in some social situations but can be quite awkward/withdrawn in others.

I'll have a look at that group on Facebook, thank you, I hadn't heard of that one.

The sickness he has experienced with the suspected GP has been the most frightening thing I have ever experienced. At the worst time, I can honestly say I thought I was losing him, he was so very ill & lost so much weight. Our GP refused to refer him to gastro saying he's very withdrawn & threw anti depressants at him!! He's had 8 admissions this year alone for the severe sickness he has experienced.

Thank you for your advice on tertiary care, this is something I wasn't aware about but I really would feel more confident about him being cared for by a proper specialist team.

I truly hope he will receive the correct care & medication soon with comprehensive advice on managing his conditions to give him some quality of life back. At the moment he is ok but it's like a ticking time bomb, we never know when it will flare up again. He is currently on Omeprazole with Domperidine & Metoclopramide to control his sickness.

As his mum I experience how awful it is to live with this so I absolutely dread to think how he feels & know, no matter how lovely people are, they really don't understand it. It's all about my son at the moment & I will fight to my last breath to get him the care he needs but I just feel plain exhausted, physically & emotionally with it all.

 

[donnellysdogs]

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.

 

[donnellysdogs]

https://m.facebook.com/groups/195148823921228

 

[Sarah-70]

As an inpatient in April, he had a gastroscopy, blood tests, stool sample to check digestive enzymes but nothing showed up. At that point they were pretty convinced he had Coeliacs Disease.
Then they forgot about him for 3 months & we have an ultrasound scan next week followed by the gastric emptying scan on 5 Sept.
I have no faith in my local hospital at all which is a very frightening thing when I think about what is wrong with him especially with his vision failing too! My daughter's cancer treatment was in London & they were amazing. In between chemo when she was poorly, we had to use our local & it was an absolute disgrace!
I do worry about the lack of knowledge surrounding GP so hope & pray he is given good care.
I'll note things down for when we see a consultant & work hard at keeping my emotions in check!
Thank you for all your help & guidance, I really appreciate it. I also joined the group you suggested.
I'll wait to post until we have an official diagnosis but I really don't see how it could be anything else..... x

 

[donnellysdogs]

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...

 

[Sarah-70]

Wow!!! That's very detailed!! Thank you. Fingers crossed we'll start to get answers soon & move forward with his care....

 

[sandra curtis]

E

 

[leahkian]

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