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Sick Daughter

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WorriedMother

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Relationship to Diabetes
Parent of person with diabetes
Just need to chat to someone as my family is at the end of its tether.

Our daughter is 28, married and has been Type 1 for 13 years. After going through a bad teenage time she has had really good control for well over 4 years.

That is until just before last Christmas when she caught the winter vomiting bug. She had just got a job after many years of unemployment and because it laid her so low she was let go from the job and has been really unwell since. She recovered to a degree from the bug but has been in and out of hospital since with DKA and she has had constant diarrhoea which has resulted in malnourishment and a loss of 3 stones in weight.

She was eventually referred to a Gastric clinic and after 5 weeks she got a diagnosis of a bile disorder for which she was prescribed tablets which took another 2 weeks to materialise. In the meantime she was admitted to hospital with DKA yet again. She has been in hospital for the last three weeks (now into fourth) and the tablets are not having the desired effect. Her blood sugars are very erratic and she is injecting lots of insulin. She actually developed DKA whilst in hospital, despite our pleas to the staff that she was dehydrating. She has lost all faith in her diabetes care team and we are at the end of our tether as they are eager to send her home and we know that the same situation will develop again if they cannot find a solution.

I was just writing in the hope that someone may have had a similar experience and could let us know if there is light at the end of that long dark tunnel
 
Hi WorriedMother, welcome to the forum. No wonder you are worried, what your daughter is suffering sounds awful :( Is she injecting herself whilst in hospital? Is she receiving care from a specialist diabetes care team whilst there? Have they tried her on a sliding scale drip to try and stabilise her levels (this is a combined glucose/insulin drip which increases insulin if levels are too high and glucose if too low)?

What have her levels been like in the past week if they feel she is fit enough to return home? Sorry for all the questions, but it may help others to provide details of their own experiences.

I hope she is feeling much stronger very soon.
 
Haven't had that experience myself but it sounds grim!! I wonder if you could get PALS involved & see if they could either help by acting as advocates for you with the doctors, & / or arranging to transfer your daughter to a different hospital with a (hopefully) more supportive team? You can look at the ratings of different hospitals on NHS Choices & I believe you have at least the right to a second opinion enshrined in the NHS. At the very least I'd be inclined to put your concerns in writing to someone senior at that hospital, stating your concerns in a measured & calm way (much as you have here 🙂 ) & asking for a response from them explaining how things stand & what they propose to do...J don't think that would be unreasonable... :confused:

Best of luck, sounds like your poor daughter (& you are having a grim time!)

Twitchy xxx
 
Thanks for the prompt replies. At least I don't feel so alone. Yes she is injecting herself in hospital and yes she has been on a sliding scale on and off since Christmas and her blood sugars level out and I think the longest they lasted level was 3-4 weeks and she was back in again. Because of the bile problem food is passed through the body without being absorbed properly so therefore there maybe too much insulin, or not enough. Her blood levels are reasonable at the moment hence the urge to send her home, but we know that won't last. We are already in contact with PALS due to the delayed medication in the first instance but we will definitely be taking it further. She has two specialist diabetic nurses who she has confidence in and although she asked ward staff to contact them on Monday they have not been again to date.
 
WorriedMother said:
Thanks for the prompt replies. At least I don't feel so alone. Yes she is injecting herself in hospital and yes she has been on a sliding scale on and off since Christmas and her blood sugars level out and I think the longest they lasted level was 3-4 weeks and she was back in again. Because of the bile problem food is passed through the body without being absorbed properly so therefore there maybe too much insulin, or not enough. Her blood levels are reasonable at the moment hence the urge to send her home, but we know that won't last. We are already in contact with PALS due to the delayed medication in the first instance but we will definitely be taking it further. She has two specialist diabetic nurses who she has confidence in and although she asked ward staff to contact them on Monday they have not been again to date.
Click to expand...

What insulin regime is she on? When you say there is a problem with the bile, is this gastroparesis (a slow or erratic stomach emptying)? If not, has it been considered?
 
Our daughter is following the DAFNE regime with slow acting Levemir night and morning and varying doses of Novorapid dependent on her carbohydrate intake at meal times. The problem with the bile is that it is being produced and then not reabsorbed back into the body but passed out. The medication she was prescribed was to absorb the bile and slow down the function of the intestine I understand. I have not replied until now as I have been at the hospital but there has been a slight bit of good news. Although the medication is not working as quickly as the consultant thought it would it has actually improved the situation a little so from being quite desperate this morning I now do not feel quite as manic at not being able to help my child and seeing her suffer.
 
WorriedMother said:
Our daughter is following the DAFNE regime with slow acting Levemir night and morning and varying doses of Novorapid dependent on her carbohydrate intake at meal times. The problem with the bile is that it is being produced and then not reabsorbed back into the body but passed out. The medication she was prescribed was to absorb the bile and slow down the function of the intestine I understand. I have not replied until now as I have been at the hospital but there has been a slight bit of good news. Although the medication is not working as quickly as the consultant thought it would it has actually improved the situation a little so from being quite desperate this morning I now do not feel quite as manic at not being able to help my child and seeing her suffer.
Click to expand...

Oh that is good news 🙂 I hope that she continues to improve and that she is back to full strength very soon, do let us know how things go 🙂
 
Really glad to hear things have taken a turn for the better! 🙂
 
Cant add any advice or suggestions, just wanted to say I hope your daughter is well soon.
 
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