Need guidance for my Daughter

Jaks 2 said:

Hi All, my Daughter has had T1D 20 years, diagnosed at the age of 10 years, she has many health issues, neuropathy, kidney disease, fibromyalgia & just been diagnosed with small bowel ulcers, she seems to spend most her time at the GP’s or hospital! No one seems to have the answer on how to help her, they just say it’s because of your diabetes! Now the medication for her ulcers are causing nausea but they say she still needs to carry on with them, I feel like I’m losing her in front of my eyes, I just need someone to help her, she is the most beautiful, kind, loving person with so much being thrown at her, I would appreciate if anyone could help in some way with their experience.
Thank you.x

Click to expand...

Hi and welcome to the forums.

Saddened to read your story. These situations can be harder on the parents than on the child with the illness.

I suppose the obvious question would be to ask what your daughter's glucose levels have been like over the past years, has she been well controlled?

I'm sure you know by now that T1 diabetes is recognised as an autoimmune condition. It does appear that some people fair less well than others once the immune system starts to go wrong.

Controlling blood glucose levels tightly can help swing the odds in our favour, but it doesn't provide guarantees.

I will tag a few experienced T1's ( @Juicyj @Diakat @therower @LooperCat @Ellie-M @Marie 2 @Kim Possible @Antje77 )who can maybe offer advice and support.

Not sure that I have advice but would like to offer some support. My father had kidney failure so. I recognise the feeling of watching someone you love struggle with treatment and balancing diet.
As @urbanracer says glucose control may be Key here. Does she test, inject and look after herself? Or has she just been dealt a really bad hand in the poker game of life?

Hello @Jaks 2 and welcome

As mentioned above, good blood glucose control is key to managing this condition, so can you tell us more about her control.

How does she cope mentally with what's happening, is she dealing with it ok ? Could she join up here and talk to others ?

Jaks 2 said:

Hi All, my Daughter has had T1D 20 years, diagnosed at the age of 10 years, she has many health issues, neuropathy, kidney disease, fibromyalgia & just been diagnosed with small bowel ulcers, she seems to spend most her time at the GP’s or hospital! No one seems to have the answer on how to help her, they just say it’s because of your diabetes! Now the medication for her ulcers are causing nausea but they say she still needs to carry on with them, I feel like I’m losing her in front of my eyes, I just need someone to help her, she is the most beautiful, kind, loving person with so much being thrown at her, I would appreciate if anyone could help in some way with their experience.
Thank you.x

Click to expand...

Hi Jaks, that is so sad. I think I would go back to the beginning, ie start from scratch again if you like. There is a more modern way of managing type 1 these days rather than the 'it's inevitable you will get all of these things so suck it up' approach. Of course none of us know the challenges you and your daughter have faced but as others have said, what are her glucose levels like on a daily basis and h1bac, etc? IF it is down to her 'diabetes' as you have been told then surely that can only be because her sugar levels have been higher than they should be. I (personally) would focus on getting as normal as possible glucose levels in the hope that would have a positive impact on all those other things. I sometimes suspect that once you get started on yet another pill (after insulin) this leads to more and more issues and more pills, I say that in response to your daughter being told it's all to do with her diabetes, I know many people have unconnected issues too. Now I know this is not always the answer to everything but I would also try low/lower carb obviously adjusting insulin doses too but that's me assuming your daughter is one of those who has been told to eat lots of carbs to match her insulin? I don't know the answer I'm afraid but it is surely worth a try to overhaul her current approach because it certainly can't make things worse based on what you have said. Can you please give us some background of a typical day for her (including what she eats, when she tests etc). xx

Jaks 2 said:

Hi All, my Daughter has had T1D 20 years, diagnosed at the age of 10 years, she has many health issues, neuropathy, kidney disease, fibromyalgia & just been diagnosed with small bowel ulcers, she seems to spend most her time at the GP’s or hospital! No one seems to have the answer on how to help her, they just say it’s because of your diabetes! Now the medication for her ulcers are causing nausea but they say she still needs to carry on with them, I feel like I’m losing her in front of my eyes, I just need someone to help her, she is the most beautiful, kind, loving person with so much being thrown at her, I would appreciate if anyone could help in some way with their experience.
Thank you.x

Click to expand...

Sounds as if you have a great and loving/supportive relationship so that is a great basis on which to make improvements to her health even if she's been dealt a bad hand by type 1.
Perhaps you can tell us a bit about her current regime ? Does she test and inject or pump? Does she have a freestyle libre or other type of continual glucose monitoring device? What's her diet like?
How confident are you in your diabetes knowledge?

Hi @Jaks 2 . Welcome to the forum.
So sorry to hear that your daughter isn’t in a good place at the moment.
Has as been asked so far, a bit more information on how your daughter manages her diabetes daily maybe beneficial to us when it comes to offering advice.
I think @KK123 has made a great point. Go back to the beginning. Living with multiple problems can often result in a loss of direction and focus. “We can’t see the wood for the trees”
Instead of trying to solve all the problems just focus on one problem and you may find the other problems start to resolve themselves or at least become easier.
It’s very easy to always blame “ diabetes “ but if you have reasonably good control then it isn’t always the case that diabetes is to blame.
If you can get your daughter on here with us. Just chatting with other T1’s ( no disrespect but we are the only ones who fully understand what it’s like day in day out ) can be a great help.
Feel free to ask any of us anything, someone will always offer something.

I agree with the others that improving her diabetic control may be the best way to tackle her situation, and sympathise intensely with you and her over your doctors' reaction that it's all due to the diabetes. Unfortunately T1 is an autoimmune disease, and those of us who have it are more likely to get other autoimmune diseases. But dismissing all her other conditions as an inevitable result of the original T1 is unhelpful and frankly wrong.

Modern diabetic treatment is much much better than it was 50 years ago or even 10 years ago, so in her position I'd be pushing to get the most modern help. She should be a good candidate for a continuous glucose monitor or a pump (if she wants one). I assume she's seeing a hospital specialist for her conditions? (I very much doubt that a GP will be able to cope with her separate but linked issues.)

Good luck to both of you. Many of us T1s on these boards have led and do lead long and healthy lives with this condition, and it's never too late to improve your situation by tightening your blood sugar control (I am assuming, quite possibly incorrectly, that her levels have room for improvement).

As others have said, it would be useful for us to have more information. However, it is telling that doctors blame it on her diabetes and I'm furious.

What I've learned the hard way is "until you try everything, you don't know what might have saved you."

I've tried, and still use, a CGM, intramuscular injections, fasting, Levemir, ketogenic diet, inhaled insulin, and sugar surfing. Not to mention CBD oil and Lamictal for my other condition.

All of these were my idea, not that of a doctor.

I have also tried (but don't use) an insulin pump, OpenAPS, metformin, hypnosis, and... relying on doctors.

I stopped relying on doctors. Nobody would admit I had brittle diabetes. I was crippled for 5 years. But I'm back and reasonably healthy because I did whatever it took.

Since I know so little about your situation, my only suggestion is that you look at "The Bernstein Solution". All the best.

The only thing I can add please try to get her a CGM. This at least will help to keep track of her blood sugar levels which are critical to try to keep the kidneys as healthy as they can be. But it will help her general health and mood if she has good control. A CGM just makes that so much easier. Better Blood sugar control also helps healing better.

But she has to want better control too for it to help. I mean no disrespect, and forgive me if I'm wrong, but I am thinking with kidney disease and neuropathy she might have had bad control. Not always the case so do forgive me if I am wrong.

Many hugs your way, I am so sorry she is going through this and that you are too.