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Neuropathy

1 reply

Jourdain11 · 22/04/2023 15:53

I hope you don't mind me posting! I'm hoping to connect with others who have some experience (either here or anywhere else you can recommend). I also posted on the Children's Health board, but it may be that there are more adults who have thus condition and I'd be happy to hear from anyone who know anything about it!

My DD1, who is nearly 11, is T1 diabetic and has recently been diagnosed as having diabetic autonomic neuropathy. The first onset was gastroparesis - she was vomiting after eating and very bloated and constipated, and had a gastric emptying test which showed delayed emptying. She's lately also developed bladder problems, which have led to her being unable to empty her bladder without a catheter.

She's managing very well, but it is miserable for her on top of managing the T1. She's also quite self-conscious about needing to use a catheter and her appearance. Her tummy looks very big and swollen because she's often quite distended and bloated and it makes it hard for her to wear a lot of clothes she likes.

I'm slightly over-anxious that she'll develop further problems - she's currently got a very noticeable eyelid twitch, for example, which I'm definitely going to bring up at her next appointment.

I guess I'm just keen to know if anyone, or their children, have experienced this and how much improvement there can be with tight blood sugar control and improved B12 levels. Also how to boost her confidence, since she's a bit low in herself.

OP posts:
Mumma02 · 24/04/2023 23:17

Firstly, I am so sorry to hear your poor daughter has this horrid condition. Has her consultant been able to offer any medication/advice to improve symptoms?

I have a genetic form of diabetes and have developed autonomic dysfunction after having covid so I know how horrible some of the symptoms are.

How long has your daughter been diagnosed as T1D and what are her usual Hba1c numbers?

If you join the diabetic forums - there's some great advice about following a low carb, high fat diet which some people have found they have been able to reverse their complications by improving their blood sugar control.

You mention B12 - is she deficient in this?

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