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Anyone had a grandchild with disautonomia?

(24 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.

LauraNorderr Sat 10-Feb-24 22:09:23

I’m sorry MOnica, I do not have any experience of this but am bumping your thread in the hope that others will see it and be able to help.

LauraNorderr Sat 10-Feb-24 22:11:20

I’ve just read your thread re school attendance officers. Seems rather heavy handed. They clearly haven’t understood the issues.

LauraNorderr Sat 10-Feb-24 22:12:07

I’m sorry to hear that your family are going through this and wish you all well

Whiff Sun 11-Feb-24 06:14:14

MOnica have you tried the rare disease society as they gave me a link for a Facebook group page for people with hereditary Hyperekplexia when I had my diagnosis in 2022.

Also the hospital should be able to tell you of any support groups . Or Google the condition there may be a charity for it or it may come under the heading of a combined charity.

Worth a try anyway. 🤗

M0nica Sun 11-Feb-24 09:13:22

Thank you Whiff (and LautaNorderr). It seems that disautonomia is linked to Ehlers-Danlos Syndrome, a problem involving hypermobility, which DDiL has, thankfully very mildly, and they have a whole section on the disease on their site. including an excellent handbook for the young people with this problem prepared by the Mayo Clinic.

Your idea of seeing if there is a Facebook page I will follow up.

Thankfully DGS, is an academic high flyer and, as his parents have just been told the Year leader in almost every subject he studies (whch is actually a characteristic of chldren with this problem although doctors do not know why), so he is not falling behind in his learning, with all his absences. His main problem is bouts of overwhelming fatigue, a bit like CFS.

Whiff Sun 11-Feb-24 11:33:52

MOnica has your grandson ever had his whole genome genetically tested? It's a simple blood test . That's the only way I finally got diagnosed because my neurologist here had the test done. All the electronic and visual tests I was never diagnosed it's only by having having my whole genome genetically tested that found it. Just an idea.

M0nica Sun 11-Feb-24 14:46:28

Whiff I do not know what tests went into his diagnosis. Although there is a clear genetic link, with his mother suffering hypermobility and the stretchy skin that goes with Ehlers-Danlos syndrome. He is the spitting image of his paternel grandfather who died when DDiL was about 5. That was from cancer, but I understand he, like DGS did not have the best of health.

JaneJudge Sun 11-Feb-24 14:53:33

This sounds very difficult Monica. It is tiring enough being a teenager without any further complications. I wonder if these people might be helpful?

M0nica Sun 11-Feb-24 16:00:31

Thank you JJ

This link describes the disorder
In DGS's case, one of his main problems is chronic fatigue. Not really surprising he is, and always has been, very thin and permanently underweight, despite, currently, a typical pubescent boy's appetite and he has grown a foot in height in the past year.

Norah Sun 11-Feb-24 16:14:10

We've a granddaughter with pots, I believe it to be part of what you're talking to. Her diagnosis was in Minnesota, not sure how that was decided, but our daughter was pleased with test result recommendations.

Granddaughter is quite sporty - always said to be reason to her fatigue, but apparently that was not the only reason. She's also an allergic young lady, finding acceptable foods has been harder for our daughter.

She is also one to easily fall to bad headaches. Misses school.

Listed items, plus, no doubt, other things, led to the diagnosis. She seems to be well suited to her new diet routine plus water, new sleep plan, a medicine - apart from which she is still missing many days of school.

M0nica Sun 11-Feb-24 17:26:48

Norah yes, you are talking about the same problem, or closely aligned. Luckily DGS doesn't have any allergies. Being a high achiever, whether sport or academic, is disproportionately present with children with this problem.

Research has been done but no one is quite sure why this should be.

AS with your DGD, it is life style issues that seem to be the key to managing it. Lots of salty fluids, regularity of eating and sleeping (and plenty of it.

It is early days yet. the diagnosis was only this week and hopefully he, and your DGD, Norah, will grow out of it.

icanhandthemback Sun 11-Feb-24 17:38:48

Oh dear, M0nica, I've just read your other thread about school attendance and I can only say that your DGS's parents are not alone in this. All my children have EDS, as do me and my sisters. Looking back, we can see a pattern within the wider family.
It seems that the stretchiness of skin or hypermobility of joints don't bear any relationship to the comorbidities of this awful condition. Disautonomia is one of the major problems where sufferers may experience Postural tachycardia syndrome (PoTS) which is where the blood pressure doesn't rise when you go from sitting to standing (amongst other things) and so you are in danger of passing out.
Girls are more likely to suffer more because they have the fluctuation of hormones which is why they often start displaying symptoms of various co-morbidities. However, both my sons have so far had mild symptoms of PoTS but one of them passed out the other day and smashed his nose/head etc. It was quite frightening.
If your DGS is suffering enough to miss a lot of school, it might be worth looking at the EDS Support (UK) sight. There is a lot of information on that site and they also have a Parent Support team. Their site can be found here:
Both my sisters, niece and daughter have all found themselves in wheelchairs for at least part of their life and they all suffer from extreme fatigue. They all suffer from people not believing they are really ill because some days are better than others but they quickly run out of steam. We all suffer from IBS, Diverticulitis, Oesophogitis, and a host of other conditions. When your collagen is affected and that makes up 30% of the human body, it is hardly surprising it has far reaching effects.

M0nica Sun 11-Feb-24 18:41:00

icanhandthemback How difficult to have your family so badly affected. We have found an excellent handbook for teenagers with disautonomia on the EDS site. Originally drawn up by the Mayo Clinic and aimed at teenagers.

Thankfully, just as DDiL's hypermobility problems are just on the edge of having the EDS syndrome and do not cause her too many problems, DGS is similar. Mainly fatigue but also queaziness. Adding to his problems is that he is waiting assessment for ADHD. Poor lad, he has copped it from both sides of the family. neurodiversity through my side of the family and disautonomia through his mothers. His sister has managed to dodge both.

Hopefully as this has only manifest itself when he has been going through an exceptionally fast growing spurt, he will grow out of it.

It is strange when so many illnesses are fluctuating, where you are better some days than others (ME, MS, Parkinsons, even heart problems) that people do not understand that.

icanhandthemback Tue 13-Feb-24 11:50:11

EDS is very often linked to Neuro-divergent brains! We also have a strong element of ADHD and ASD within the family. Dyspraxia is also prevalent and I am told that it is a co-morbidity of EDS. On the surface it seems such a benign syndrome with people being able to do "funny tricks" with their stretchy skin and bendy joints but the wide spread pain and other co-morbidities make life very difficult. Because of that my niece has decided not to have any children and my son decided only to have the one child when he turned out to be ASD.

pomegranatejuice Tue 13-Feb-24 11:56:51

Hi there Monica.

It has already been mentioned about co-occurring incidences of EDS, Hypermobility etc and there are a number of other conditions where that occurs such as ME/CFS, and often with a neurodivergent profile such as dyslexia, dyspraxia, and others. have a look at this site there is lots of allied information on t here. It is more common than you think, and once you know, you know. But so many don't. He will probably need some reasonable adjustments at school too.

Sennelier1 Tue 13-Feb-24 11:56:54

So sorry to hear about the disautonomia of your grandchild, but seems like he's in good hands ❤️‍🩹 Maybe the problems will diminish once he's fully grown and less strain is put on his fragile body - we all know growing is hard work. Sending you a big hug and lots of courage.

nexus63 Tue 13-Feb-24 12:20:03

the brain charity offers help to family and carers, just google it, my family was given this website 2 weeks ago for my 5 year old grandson, he does not have diautonomia, he has had one round of tests with a monitor into the brain and is now waiting for an endoscopy into the brain.

mlynne239 Tue 13-Feb-24 12:20:33

It is a problem with Long Covid and Chronic Fatigue Syndrome formerly known as m e. It is very hard to find a GP who knows about it.

Whiff Tue 13-Feb-24 13:06:26

nexus63 if you mean the Brain Charity Liverpool. They are brilliant..They help anyone all over the country. If it wasn't for them getting me a solicitor pro bono I wouldn't have gotten PIP as I had to go to the tribunal took over a year to get there and a support worker went with me . But the tribunal panel was lovely and had their decision there. Been trying for 35 years for disability benefits . It's all thanks to the Braun Charity I finally got enhanced for both living and mobility indefinitely. It can't be taken off me as the tribunal is a court. Plus it was back dated to when I asked for the PIP forms.

There are over 600 neurological conditions and the Brain Charity will help anyone any age. Plus they run various activities daily during the week. Plus support given to carers . And help getting any benefits you are entitled to. Which is so important if you are disabled or have disabled family members.

M0nica Tue 13-Feb-24 17:02:42

Thankfully DGS is doing well at school and regularly walks 3 miles a day to and from school. He does not need special help or any care .It just needs the school and all his teachers to understand that when he faints or feels faint at school or zones out in class because he is suddenly so tired, not to harrass him but let him be, until he feels better. Plus he will probably have more days off school than is normal at his age.

It is very clear from the EDS leaflet, that this is a medical problem whose solution lies to a great extent in self management. DGS understanding the problem and patterns of eating, drinking and exercise that will be most beneficial.

I had a chronic medical condition as a child, totally unrelated to DGS's problem and I got it under control around the same age as DGS, when I realised that certain eating patterns, certain foods, exercise and hydration could help me control it almost completely, so I feel he is old enoygh and intelligent enough to understand the problem and what will help him - and young enough to throw it all to the winds, when busy playing Dungeons and Dragons!

65 years on all these changes are second nature to me, they are my preferred eating and exercise patterns and I cannot remember when the old problem caused me any concern.

Thank you for the references everyone has given me. I will follow them up and pass them on to his parents.

Norah Tue 13-Feb-24 17:13:50

I asked our daughter what she wrote on the school form.

She said: "PoTs forces functional/integrative lifestyle and food changes, perhaps different from to other children, needing to be followed." [then list of her daughter's specifics]

I doubt her wording matters, but there it is.

icanhandthemback Tue 13-Feb-24 17:49:40

Also the best thing for EDS is to keep fit if you are able so walking will be helpful too. .

M0nica Wed 14-Feb-24 17:09:29

Thank you to all those who have given advice and links. These are being followed up.

Gransnet is wonderful . There is always someone, and often several who can help you and say 'we too' over any problem, which is so comforting.