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Anyone had a grandchild with disautonomia?

(31 Posts)
M0nica Sat 10-Feb-24 21:11:34

Never heard of diautonomia? No, neither had I until yesterday afternoon when I was told DGS, aged 13, has it

It is do with the automatic systems that regulate our body - heart function, bowels lungs, digestion etc. These become less reliable than they should be. DH has just had a pace maker fitted because his heart was not beating in a regular fashion - this is a an example of a disautonomic problem.

However a version also exists that affects pubescent children, mainly girls and manifests itself in sudden patches of extreme fatigue, nausea and vomiting, diaorrhea etc and various other vague complaints, which in girls is so often just seen as a mental health issue.

We are lucky that DGS, in old fashioned terms has always been a 'delicate child' health wise. He is, and has always been painfully thin and he has grown nearly a foot in the last year, so, when he began to get all these other problems, his medical history was such that his GP quickly referred him to a paediatrician and this was the diagnosis.

The problem is that it is not a very common problem and we all know little or nothing about it, so I just wondered whether someone on GN might have some experience of it in their family.

M0nica Thu 06-Aug-26 10:40:51

Thank you. Two years on and we have all got used to the diagnosis and much of the shock has worn off. DGS has just done GCSE's without problem and is off to VI form college

Reading back through this thread and seeing the shock of the diagnosis coming out in what I wrote and how comforting and informative everyone's replies were.

As I said back in 2024 Gransnet is wonderful - and it is till true.

Lathyrus3 Thu 06-Aug-26 10:46:52

Ah I’ve come late to this thread.

I was going to say consider ElhersDanlos.

It runs in our family and there are different types. The one that causes problems with internal organs is the one that my mother, myself and my daughter suffer from. And probably her mother who was also disabled.

In our village they just used to say “It runs in that family”.

Strangely it seems to affect different organs in different people. My daughter is unable to have children because of it whilst my problems are all to do with heart and vascular system and my mothers with anything connected to processing food including kidneys and liver.

It can cause difficulties sometimes. Hopefully a diagnosis will help when support is needed.

We have all had happy fulfilling lives😀

Greenfinch Thu 06-Aug-26 10:52:38

How is your DGS coping now MOnica?. I was unaware of this condition until you explained it in your post two and a half years ago .

Lathyrus3 Thu 06-Aug-26 10:56:28

Didnt realise it was an old thread. Sorry.

Greenfinch Thu 06-Aug-26 11:06:29

I see you have already answered MOnica. Apologies and thanks.