To think we are just as entitled to this help as 'older' people?

[Edenviolet]

We have four dcs all with significant health issues. I do not drive and we struggle to get them to the numerous and frequent hospital appts and they also have a lot of illnesses so need to see the gp a lot.

This has meant dh taking far too much time off and when he can't it costs a fortune in taxi fares.

Our gp surgery runs a transport scheme for gp and hosp appts. I phoned today as we really need the help. The woman I spoke to was decidedly off and said the service is really meant for older people, and how had I been getting to appts till now why couldn't I do that. She was very sharp in her manner and quite dismissive. Then she said I had to see the dr to get approved and that they might not and if they do there was no guarantee she would be able to find a driver when I needed one.

I phoned back to make the gp appt and suddenly heard my name in the background- the woman I'd just spoken to was talking about me and dcs to another person and it didn't sound complimentary! The receptionist I was speaking to suddenly realised, put the call on hold then came back on and said , oh I'm really sorry about that.

It has made me feel like rubbish

[Edenviolet]

Home start round here closed last year.

The children's centre do baby and toddler classes and I have my counselling there as ds can play in the same room which is handy.

[DizzyZebra]

Do you have a sure start centre near by OP? Ours offer something called home start, Where they have vollunteers who will come round and help you, help you get out if you have things to do with the DCs etc.

I don't know if it would be any use to you or if it would help but i thought i'd throw it out there. Your situation sounds incredibly stressful so maybe even them helping at home might take the pressure off a few hours a week.

[CouthyMow]

Diabetes isn't the only thing that can cause ketosis, but there IS a chance that DS2 could have diabetes - we will find out more after seeing the Rheumy on the 21st. He's always gone into ketosis if he's exercised more than usual, I just didn't realise when he was tiny that it was ketosis. It's the ketosis and pear drop smell that finally got the Chief Physio to refer him TO Rheumy.

He goes into ketosis whenever he's ill, too...

[hopskipandthump]

Also - wondering if there are any local volunteer organisations you could contact - not to be a volunteer obviously, but to receive help from volunteers?

[hopskipandthump]

OP, I have nothing very useful to contribute, but I wanted to let you know that I sympathise wholeheartedly with you.

I have a significant disability. 2 of my 3 children also have a (completely different and unexpected) medical condition - not diagnosed until after the third was born. Fortunately their condition is one that can be completely managed, so our situation is not anywhere near as difficult as yours. But we also have a lot of medical appointments and I cannot drive (for disability reasons). I understand the huge difficulty you face in that aspect.

Do you have any religious belief? Even if you do not, do you have a 'cultural' religion (i.e. your parents' or grandparents' religion?) If so, could you make contact with your local church/place of worship? I feel that a good minister would do something to help - for example, getting local retired parishioners to offer help with driving you to appointments. If you got to know someone very well, and trusted them, then there might also be the option in the future of leaving three DC behind with them to babysit and taking one DC on the bus to an appointment - I appreciate that might not be possible, depending on the care the other DC might need at home.

I feel you really need some practical support - someone who can step in and help take you to places.

[slev]

Haven't read the full thread because I got bored of the bits where people started arguing about DLA.

But as an idea - could you put a card up in a window and see if anyone local is prepared to take you? You might find the odd retired/SAHM/out of work/any other reason someone might be home during the day person who would quite happily take you back and forth for the cost of petrol plus a bit extra if you could afford it so cheaper than a taxi.

There might be some nice people out there, and if you don't ask...

Apologies if someone else suggested it and I've nicked your idea

[LeapingOverTheWall]

DDs consultant is doing some research into what's going on at an endocrine level - they know there's a connection, but not what it is yet. We also have mixtures of PCOS and POTS and EDS/JHS - I'd love to know what's at the bottom of it all then I can blame my DM for her rotten genes

[Edenviolet]

Dd1 has pots. I have pcos. I had no idea the were connections between these conditions.

[LeapingOverTheWall]

don't know about EDS and diabetes, but there is a link between POTS (which often goes along with EDS) and PCOS (which is basically insulin resistance - all the other symptoms generally follow on from that). So there may be something underlying these other conditions making you more prone to the others?

[Edenviolet]

I had an over active thyroid after dd2 was born but it resolved. I think I'm ok now, could get it checked just in case.

[Edenviolet]

Is there a link between eds and diabetes?

I have non diabetic hypos and dd has type 1. I had no idea the two could be connected?

[CouthyMow]

Actually, hedgehog - have YOU had your thyroid checked? It might be worthwhile. Apparently I had "sub- clinical hypothyroidism" that my GP neglected to even tell me about, far less treat, for two years, that has now developed into full-blown hypothyroidism.

It could explain the tearfulness, exhaustion (not that life isn't exhausting enough for us...), etc. just a thought.

[CouthyMow]

It's taken me 10 years to get a referral to a rheumatologist for my DS2, as his EDS is 9/9 on the Beighton scale, and affects EVERY system in his body.

He is on medication as his bowels are too weak to perform effectively without it.

He has kyphosis as a result of his back muscles (despite 9.5 years of Physio / OT / hydrotherapy) not being strong enough to support his spine, and may yet end up BACK in the wheelchair he was in until he was 5yo. His orthopaedic consultant is looking at a back brace next, and if that fails, spinal fusion.

He has respiratory issues (that he has nearly died from 4 times ) because his lungs aren't strong enough to fully inhale and exhale - he has medication for that too.

He has to wear orthotic Hospital boots AND orthotic inserts, and still suffers constant pain from ankle dislocations and bilateral plantar fasciitis.

He suffers continual dislocations (or 'subluxes') in his thumbs, wrists, shoulders, ankles, and hip subluxes are the newest one.

There are issues with his insulin production, he is very borderline for diabetes - he goes into ketosis because his weak muscles use more energy than they usually would to keep him going, and I have to be careful - when his breath smells of pear drops, I have to sit him down to rest and give him something sugary.

He was my THIRD DC. My eldest had been dxd with hypermobility syndrome (similar to EDS, a form of it, basically) but I had been told that despite me having the same issue, and my DBro, it most definitely WASN'T hereditary, as we hadn't (at that point) git a formal dx, and no further DC's would have it. DD is around a 6/9 on the Beighton scale, so affected, but not terribly so IYSWIM.

Dd was dxd at 5y3mo. By that point, I was 7mo pg with DS2. DS1 was unaffected, so I believed the medics that it wasn't hereditary and it had just been bad luck in our family.

So DS2 was almost here when DD was first dxd.

I wasn't planning any more DC's, but a) See earlier comment about EDS affecting birth control, and then b) add in the fact that I was dxd with epilepsy after DS2's birth, and epilepsy meds ALSO affect birth control.

DS3 born, I can TELL he has EDS. Physio denies that fact, despite us having had genetic testing done (for another reason!!) that proved beyond a shadow of a doubt that we have a problem on one of the two genes that causes EDS. Eventually get an admission that he, too, has EDS.

It happens. We also have other, very shitty genetic bollocky inherited illnesses that we didn't know until too late were genetic.

EDS is a bollocky bastard illness that can affect so many different aspects of life.

It's fucked up my thyroid, just as an additional super co morbid...

[Jux]

Now of someone wo has 4 of 6 children with a genetic disease which will lead to premature death, following lifelong pain and progressive disability. Neither she nor her h have the condition but the combination of their genes has led to it. Would anyone say they shouldn't have had so many children? The dx of the first didn't happen until the 4th was born, so is anyone going to tell them they shouldn't have had the last 2? Those are the healthy ones, btw, the ones who will get to adulthood - something which the others won't.

Such a fatuous thing to say to anyone.

[LeapingOverTheWall]

what's even more depressing Doublelife is that there a plenty of specialists out there who can't use the Beighton/Brighton scale properly - DD saw a local paediatrician who is the paed rheumy "specialist" who read her diagnosis letter from Prof Graeme, asked her to flex her hand back, and decided that because it didn't fold all the way back, she couldn't possibly have EDS .

Formerbabe - how was I supposed to know that I'd give two of three DC EDS (and the third has started complaining about joint pain ) when I don't have a diagnosis myself, and nor does my DM? Should I not have bothered with DC "just in case" they might at ages 13, 17 and 11 start having symptoms of a hard to diagnose/difficult to treat medical condition?

[Edenviolet]

Surgery in eds is a disaster.dh has had numerous knee ops due to dislocations and they are worse than before. Also a old procedure to correct his pectus chest which was so traumatic he still las the metal bar in now 20 years later when it should have been removed and the scarring is awful.

Dd1 and ds2 will have to have their chests operated on but its a new minimally invasive procedure now.

[DoubleLifeIsALifeOfSorts]

Average is 6-8 Yrs before diagnosis. And that's after people have managed to get anyone to try and diagnose them in the first place. So not counting the years of pain and anxiety when you know something is wrong but can't get anyone to listen.

As i recall a Prof Grahame study said 2/3 of gps cannot use the basic Beighton scoring properly. Which was developed so that hcp could make a preliminary diagnosis that gets the patient at least referred.

And of course the real irony is that early diagnosis and intervention can stop people developing the worst problems as its through misusing your body that stores up problems for the future.

It's a terrible terrible condition, and the medical help provided is appalling - the only specialist unit in the country provides a 'diagnose and discharge' service. There is a rehab unit but it's not set up for people who have been left so long they are severely disabled.

I'm not sure whether it's better to have this level of care in the UK, or be in the US where massively invasive surgery after surgery is the norm, if you have insurance of course. Left with no treatment, or being a human guinea pig...

[elliejjtiny]

Rockin we've had that too. I only found out I had EDS when DS2 was diagnosed aged 2 and I was pregnant with DS3. I'm not bad enough to see specialists about it so it was only after getting pregnant with DC5 (my 3rd unplanned pregnancy) that I found out from another EDS sufferer that EDS and oral contraceptives don't mix. I've got 3 DC's with EDS and another one with other problems which may or may not be related (DC5 not born yet). People make comments on my stupidity for having 4 DC's with disabilities but it really is easily done, especially when DC's are born close together and disabilities aren't obvious at birth.

[secretsofsanta]

Morning Hedgehog.... Hoping todays a better day for you all.

[RockinAroundTheXmasTreeHippy]

Oh & BTW its another of those conditions that can too often take YEARS if not DECADES to get a true diagnosis -

I'm 11 years in & only just getting a proper diagnosis now, having had health problems to a lesser degree all my life. Had I not been much older when I had my DD, I too could have gone on to have more DCs & passed it on to them too - but how the fuck was I meant to know that with a shite medical system where too many doctors don't even know the condition exists - or like our own GP - knew about it, even has a benign form of it herself , but thought it just meant you were "a bit bendy" & had no clue it linked DDs symptoms as one condition or my own either - we had to do her job for her, as many sufferers do - perhaps if we got the wage for it, the OP could afford the cab fares

[RockinAroundTheXmasTreeHippy]

My DD also has EDS (as do I) & she had 21 justified A&E visits alone last year, that's not taking into account any of her various specialist appointments or her weekly physio -

we are in a similar position to the OP in that DH works an hour away & his wage takes us just outside the threshold for help with dentists etc & that of course doesn't take into account the £200 a month it cost him to get to work, which I'm sure the OPs DH has to find too & no one we can rely on for help to hospitals - as often as we go with one DC & me that's a hell of a big ask anyway.

Thankfully we are very close to the hospital, but DD spends a lot of time on crutches, meaning we can't walk there however close & bus fair for a short journey there & back is £10 a go - even that bites


Some people on this thread need to seriously educate themselves before being so bloody judgemental

[CouthyMow]

And that's in a reasonably large town in Essex...not exactly rural.

[CouthyMow]

How would you manage 117 Hospital appointments and 98 GP visits in one year? That is about normal if you have 4 DC's with health issues and you have health issues yourself...

I personally have to catch 2 buses to my GP, as I was moved across town for an adapted house, but the local GP 'has no space for us'. (Despite taking on another 3 whole families since my family was turned away. What they mean is that my family's medications are too expensive as they come out of the GP's budget and they aren't willing to take on our family, meaning I have to catch two buses each way, a four bus, two and a half hour round trip just to see my fucking GP)

Hollow laugh to changing GP when you have expensive medications on prescription...

[RockinAroundTheXmasTreeHippy]

This scheme is not just for elderly people - my DF used to be a driver for this scheme, he was for many years after retirement, in several different cities & he & DM moved around a lot.

He took all kinds of patients, young & old to appointments all over the country

The headquarters for the drivers has been based at the main local hospital wherever he has worked, contact them directly

Complain to the practice manager about the jobs worth - in writing so that its formal & whilst your at point out that's she's not only breaking confidentiality, leaving you feeling very hurt & embarrassed, but is giving out inaccurate info too

for you

[Dazoo]

OP - delurking to say how much I admire you. I can't add any advice as don't have much knowledge of how these things work in the UK and I wouldn't know how to advise on your relationship. I wish I lived near as I'd be over like a shot to try to give real support.