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Is there still an EDS/Hypermobility thread? I need some advice re ds2.

(22 Posts)
moosemama Wed 28-Sep-16 16:31:42

Can't seem to find one and was hoping for some advice re ds2. Sorry this is so long, but didn't want to miss out the history, which is relevant to the current situation.

Ds is 12, has JHS, constant, daily pain, regular ankle subluxes and sprains, neck, shoulder, hip and knee problems etc and is incredibly stoic.

He was in a lot of pain across just about all joints over the weekend. Sent a letter for his new PE teacher on Monday morning, to remind her about his dx and what he should/shouldn't do, but also to give her the heads up that if he said he really couldn't do PE that morning, then please would she excuse him and finally asked her to remind him he could have a second dose of painkillers from the school office just before lunch.

Opened the door when he arrived home to find him leaning on the door frame with tears streaming down his face, in absolute agony.

He had done PE, as he knows how important fitness is, but opted out of some of the higher impact moves. Then, his PE teacher was so concerned about his pain level that she took his PE kit off him, as she didn't want him carrying it around school all day. Unfortunately he didn't have the good sense to go and get a pain relief top up, but he says at that point the pain was just on the bad end of normal for him and he knows there's little point in medicating for that.

Then, half way home, he suddenly had a massive pain in his ankle, without a twist, eversion or sublux, in fact no accident or injury at all. He says it was agony and it was as if someone flicked a switch and the pain started as agony and continued to stay at that level.

There is no swelling or bruising, but he can't weight-bear or walk on that ankle without massive pain. Kept him home yesterday, raised, iced and kept up pain relief, but it was no better this morning. Rang the GP's to be triaged, but they advised A&E. Four hours at A&E and an xray later and we were told it was either over-use or a sprain and to continue raising, icing and pain relief, plus do the usual sprain exercises.

Problem is, we only saw a trainee the whole time we were there. He was very unsure and kept nipping out to ask advice. Almost sent us home after a quick triage, but then went and checked with a superior, came back and said he wanted it xrayed. When we explained ds has JHS, he just said oh, ok he's hypermobile - to which I said, 'No he has JHS, so that means daily pain, exhaustion and other issues and he's usually extremely stoic about pain, even quite bad sprains, so this is totally out of character for him.' I don't think the nurse even knew what JHS was, let alone how to take that into consideration.

So, basically a waste of four hours and no further forward.

His pain is actually inside the joint. None around the side or back of his ankle, but when the nurse (repeatedly) pressed his fingers into the gap between foot and ankle, ds nearly hit the roof and dorsiflexion ramps his pain up to a 10+/10 according to ds. Based on this and the lack of swelling/bruising I suspect he has either an ankle impingement or synovial capsule inflammation, brought on by chronic instability and regular sprains and twists. Impingement seems more likely, with the pain starting as if someone flicked a switch. If I'm right, the exercises the nurse told ds to do are totally inappropriate and he needs a referral to sports physio, plus a podiatry assessment and probably a brace and/or orthotics while he gradually returns to normal movement.

I also asked them what to do about school, as not only can he not walk the mile and a half there (I can't drive) but there's no way he could walk around the school all day either. The nurse's response when I asked was, that's entirely up to you. hmm Surely if their advice is to keep it raised and ice regularly, he can't attend school?

My instinct was to call the GP again straight away, but then I know, with us only having been to A&E this morning that they're likely to say wait and see how he goes.

So he's on the sofa, with his foot in the air, having it regularly iced and getting up for a potter about every 10 minutes in 60, as well as doing the exercises that don't require dorsiflexion to make sure he's not allowing it to seize.

What are my chances getting him actually seen by someone who knows what they're doing this time? His initial dx from a paediatrician was 'lax ligaments' and we were then sent to general physio, who admitted they knew nothing about hypermobility in children, but took advice over the phone from another, larger physio department in the same trust, gave him a totally inappropriate exercise plan and eventually told us he fitted the criteria for JHS rather than just hypermobility, before discharging. I asked for a podiatry referral and the paed refused, because although he has flat feet he develops an arch when he goes onto his toes confused. Surely they should also be considering gait and ankle stability? School nurse referred to OT. We were lucky enough to see the head OT, who is lovely and very well respected. She was furious he hadn't got a proper dx of JHS, insisted that was the correct dx and went into school to assess his classroom and advise on things like not sitting on the floor cross legged, having a chair for assembly etc and tried to get him referred to the children's hospital, who apparently have a paeds pain clinic. They refused the referral, as we'd come via a different NHS pathway. So we were left with no help and no formal diagnosis, despite both the trust's own specialist physio and the Head PT agreeing it should be a dx of JHS.

Dh has the opportunity to add ds to his company health insurance policy, with a full history disregard,next month. What's the likelihood of us being able to be seen by the right people to help ds privately and does anyone have any advice who should we ask to see if we do add him?

imip Wed 28-Sep-16 18:36:05

Your poor ds.

Dd9 has JHS. We were dx by a rheumatologist but tbh, once we had the diagnosis, she was discharged and we are now seen only by physio (every 6 months or so), podiatry and OT. Her first diagnosis was actually by a private physio friend of Dh. Prior this this, she has a dx of arthritis, and was seen regularly by the rheumatology team at our local hospital and GOSH. After diagnosis, they are really not keen to be involved.

I'm pretty sure the physio is the right person to dx JHS, in fact the consultant used to defer to the physio's judgement when we had joint consultations.

The private physio we saw was great, specialised in paediatrics, I'm sure you can see the right person privately, also the right podiatrist. Dd has customised inner soles. She does regular exercises. We've been and done a referral to counselling for pain management.

It sounds like he really could see a podiatrist. I asked our go to refer us. Could you give that a go and then decide on private health insurance if unsuccessful?

imip Wed 28-Sep-16 18:37:21

Gp referred us, not go!

Ineedmorepatience Wed 28-Sep-16 20:07:44

Dd3 also has made to measure orthotics, off the shelf ones dont really help her.

She is seen by orthotists and physio at our nearest childrens hosp. She is also under an orthopedic surgeon for her feet and ankles.

I do think she should be seen by a rheumatologist as well but I havent managed to convince our GP yet!

I feel really sad for your son moose his situation sounds desperate at the moment sad

moosemama Wed 28-Sep-16 20:49:57

Thank you imip. It's reassuring to hear from someone who has actually had decent care and a proper dx, as well as someone who's been successful with private referrals as well.

Dh is actually having private physio himself via his company insurance at the moment and asked at his appointment today. They said he should be able to see a paediatric physio, so I think we'll get him added to the insurance policy and go to the GP as well to cover all bases.

Hi Ineed. Ds2's feet are like mine. I had orthotics as a child, but they hurt so much I used to sneak a different pair of shoes to school in my bag and change when I got there. blush When I saw a physio after developing CRPS she said she'd never seen feet and ankles as bad as mine and she was due to retire the following week! shock I don't want ds suffering a lifetime of pain and problems like I have, I really want to get him some help and for someone to give him advice and support re exercise and building up his muscles.

We might be able to persuade the GP to go for a rheums appointment, if I labour the fact my Mum has just been through them and was recently referred for Genetic Counselling for EDS. (Her appointment with GC hasn't come through yet, but she's had a letter to say she's on the waiting list.) There's a whole family picture building up of EDS and hypermobility related issues, from aortic dilation to pots and autonomic dysfunction, as well as family members with multiple joint replacements and severe arthritis and lots of other issue that can all be traced back to the EDS.

I was reading a report earlier, on the success of slow, graded resistance training for children with JHS. He used to enjoy doing parts of my interval training when he was younger, so I think that might be something that would work for him. The hopeless physio we saw after his 'lax ligaments' dx wanted him to run up and down the garden, kick a ball repeatedly against a wall and run up and downstairs, among other exercises that were extremely painful and involved far too much impact - in fact, after telling us trampolining was a bad idea, told him to go on our trampolining every day. confused I also have to start a very slow, graduated exercise programme as part of my pots treatment, so perhaps it's something we could do together.

Thank you both. I am now more convinced than ever that he's been badly let down as a result of the original crappy dx from the General Paed. I definitely need to fight for him now, as he can't carry on the way he's been going and it simply isn't fair that he's not getting the help he needs.

Now I have to decide whether to go for a triage appointment at the GP tomorrow or wait and book one with the head of practice, who most people hate (because he's a real straight talker) but I have a lot of respect for and has always been fantastic with myself and the dcs over the years. Problem is, I won't get an appointment with him for at least a fortnight and in the meantime I have ds stuck at home in a lot of pain. sad

Ineedmorepatience Wed 28-Sep-16 21:53:30

I would do both! Go triage for some decent pain management and book the decent GP for a longer term referral!

moosemama Wed 28-Sep-16 22:24:43

Funnily enough, that's exactly what dh just said Ineed. Great minds think alike! grin

I will call them first thing tomorrow. Hope it's going to be a cooler day, as my neighbours have just arrived back off holiday and judging by the amount of drool on the kitchen floor and the recording I took of Pip howling while we were at the hospital this morning, he's going to have to come with us and stay in the car while we're at the appointment. Good job my Mum doesn't mind driving us to appointments while I repeatedly fail my driving test as well. blush

imip Thu 29-Sep-16 06:32:31

Your ds doesn't have an exercise programme now? He does really need one. My dd is affected in her ankles, knees and wrists; with occasional bio mechanical pain elsewhere. The problem could be that your ds could be feeling more pain because he's adjusting his body to relieve pain in one place, causing more pain elsewhere. At dds worst, she was unable to walk. We'd have to carry her the short 500m to school as she was crying all the way.

Exercise is good for JHS because it strengthens the muscles around the hyper mobile joints, providing them with more support. Dd has 1 exercise for her ankles that she does every day. This is down from 4 exercises. We've stopped her wrist exercises over summer and this is now going to be delivered at school. She has a great OT, who we have a very good relationship with due to my other dd having ASD - in our borough, they like one OT to work with a family. We have had a few home visits from her.

If you have EDS in the family, you really should be at rheumatology for a proper dx. Dds friend is in this position, though she doesn't suffer with regular pain. Her dad has recently been dx with EDS, she is hypermobility and now has the dx. I don't see how the go couldn't refer you.

Btw, I've read that pain relief is of limited use with JHS, and that is certainly dds experience. With the initial dx of arthritis, she spend 6 months on naproxen. Didn't help at all. The key for us was a very good pair of trainers that she wears constantly. It was like a miracle and stopped her being crippled by pain every day (though she still experiences daily pain).

Some physio units have a gym with regular classes and we will probably send dd to this. She is very sporty and very strong, which is why she now just has one exercise. She is less crippled with pain because we pace her activities. She can restrict herself from high impact exercise (eg, doesn't always do vault at gymnastics and focuses on core strength and balance).

I have to laugh about the trampolining. Dd's physio is very supportive of her doing lots of exercises, even when their physio's have recommended not doing it eg gymnastics,. However, the physio dept at GOSH said that trampolining was the only thing they didn't recommend. My other dd has ASD, so a trampoline is very valuable for her! JHS dd still uses it, but more to practice gymnastics, walk overs etc.

I'd be pushing for rheumatology, physio, OT and podiatry, it is all warranted.

moosemama Thu 29-Sep-16 10:29:23

No, he hasn't got a current exercise programme. The local physio was no help at all and we were refused the referral to the paeds physio that knows about JHS because we were on the wrong NHS pathway.

He used to work out with me doing light weights, but I have been very ill myself (I have POTs and Autonomic Dysfunction) and not only had to stop, but haven't been able to do much of anything but try and get through each day until recently (I'm now finally on medication and getting some help).

OT said they'd done all the could and physio should be advising, supporting, tried to get us referred to the Children's Hospital but the referral was refused.

He/we know how important exercise is, but at the same time I'm worried about getting it wrong and doing him damage if I try and go it alone. We paid for him to have private pilates lessons and work on a reformer for a while, it definitely helped, but we just couldn't afford to carry on with that.

Pain relief doesn't really help ds generally, but will take the edge of an acute injury, rather than the chronic pain and we're using NSAIDs at to reduce inflammation, rather than for pain relief with this injury or whatever it is. Nurse at the hospital gave him paracetamol, despite me telling him it wouldn't help, then gave me a lecture for not having given him any myself. angry

Mum is just shy of 70 and has only just been dx with EDS and referred for genetic counselling/testing. Rheums discharged her, as they said that they don't really know anything about EDS. In fact they told her Cardiology should dx and advise (because of her dilated aorta and mvp) and Cardiology said they should, so she was caught in the crossfire, so-to-speak. She should have been dxd years ago, as she has had several joint replacements (some privately) and her surgeon noted abnormal tissue response and impaired wound healing, as well as prolapses and the heart issues. She has had widespread, daily joint pain since she was a child and spent a year in hospital on traction and a further year in a leg caliper as a child, for a hip issue it turned out they had misdiagnosed. Our NHS trust is truly dire.

I am hypermobile, with widespread joint pain, but not as bad as ds2 or my Mum and have Complex Regional Pain Syndrome, brought on by yet another ankle sprain and complex migraine, as well as the AD and POTs. It all clearly points to EDS, but getting referrals to anyone that can help around here seems like an impossible task for some reason. I have spent years going round in circles with neurology running endless tests and only got a diagnosis of AD/POTs by going private to someone recommended by DINET, after narrowing down the possibilities myself through tonnes of research.

I was a gymnast and all round sports/fitness obsessed teenager myself, which was my saviour for both the joints and the POTs, which they've traced right back into childhood. I wish ds2 was sporty, but he's a total tech-head and not keen on exercise at all, so it's an uphill battle, even though he knows he needs to do it.

Both Mum and I were told they wouldn't refer out of area, because even if we are formally dxd ' there is nothing anyone can do for EDS'. hmm They have only just decided I should have annual ECGs, since they found my Mum's aortic dilation and I am now fighting to get my three dcs checked. We briefly had a registrar GP that was genuinely interested and keen to try and move things along for us, but she's moved placement now, unfortunately.

Everything is a huge fight and this is on top of fighting for ds1's (who is 14 and has ASD) SEN support and handling his massive school-related anxiety. We're just about to start his EHCP transfer, so that's another thing to add to the list.

Just back from my driving lesson and about to call the GP to book a triage appointment, so it's all on record and a general appointment with the decent GP as soon as they can fit him in.

Interestingly, my driving instructor's daughter and grand-daughter both have JHS and the grand-daughter is under the team at the Children's Hospital that the OT referred ds to, so that's where I am going to push for a new referral to. They have paed rhem, physio, podiatry and a paeds pain clinic.

Ankle no better this morning and ds getting increasingly cheesed off with just sitting there with his leg raised. He wants to get back to school and obviously, resting and icing the ankle isn't helping maintain his muscles.

Ineedmorepatience Thu 29-Sep-16 13:11:37

Hope today is a better day moose flowers

moosemama Thu 29-Sep-16 13:22:30

Thanks Ineed.

Triage nurse at the GP's said we seem to be doing everything they'd advise anyway, so to skip the triage appointment, as they can't do anything to 'fix' the problem today and see one of the GP's first thing tomorrow to discuss referrals. I've booked that in the first instance, although would prefer to see the head of practice, but will see how tomorrow goes and go from there.

I have printed out some info on anterior impingements and typed up some notes on the family background re EDS to take with me and will not be leaving there without a plan.

Ineedmorepatience Thu 29-Sep-16 13:34:26

Good well done. Hope things start moving forward for you and him soon.

Runningtokeepstill Thu 29-Sep-16 17:07:23

My youngest has JHS although some of his paperwork said EDS 3. He has chronic pain but doesn't dislocate or sublux joints. However, I've heard from families of those who do that's it's better to say EDS rather than JHS if you go to A&E as (a) they are more likely to have heard of it and (b) are more likely to take it seriously.

Finding physios who are experienced in dealing with JHS/EDS seems to be something of a postcode lottery but I did think things at our local hospital seemed to have improved when ds was recently re-referred so perhaps better training is filtering through. I hope you can get sorted out.

moosemama Thu 29-Sep-16 21:35:46

Thank you. Ineed and Running.

He has now developed a small lump just in front of his ankle joint, which backs up the probability of impingement and/or synovitis.

moosemama Fri 30-Sep-16 12:23:40

Well, that was a complete waste of time - although she did - after me explaining about Mum and my own dxs - agree to refer to Rheumatology at the Children's Hospital, so that's a start.

Unfortunately, she had no clue what is wrong or how to treat it and said podiatry is no longer an NHS service, so we have to self refer and pay, but she had no idea whether or not the contact details she had covered paediatrics. I pointed out that the advice given by an unsupervised trainee at A&E appears to be contraindicated for what I suspect is wrong and she agreed, but then said 'well perhaps just gentle exercises then'. angry

So, basically she sent me home with a child that can't walk, without any idea what's wrong with him or how to treat it and couldn't tell me what to do next, other than perhaps calling the podiatry number and asking them if they 'do children'. angry

Unbelievable.

I have now contacted a private physio, who seemed very on the ball, chatted with me on the phone about what had happened, booked me their first available appointment (Monday afternoon) and said to not let him exercise or weight-bear at all on that ankle at all till they've seen him (as it does sound like impingement/synovitis). Also told me to either go back to A&E and demand crutches for him or buy some for next day delivery online (which my Mum very kindly did to save another 4 hour wait and potential row with A&E staff).

I am now waiting for a call back from either the Head of KS3 or his Head of Year to discuss what to do about organising them getting some school work organised for him to do at home.

I was honestly speechless by the time I came out of the GP's office. Ds has been let down by the NHS over and over again and I couldn't believe they would just leave him in pain, unable to walk, with no dx and no treatment.

moosemama Mon 03-Oct-16 20:29:01

We saw the private physio this evening and he's now on crutches.

Physio took a full history, assessed ds' current movement and pain etc, then did some ultrasound and tens-type electro-pad healing stimulation, before teaching him how to use the crutches properly.

He's still non-weight-bearing, but has to gradually increase the amount of weight through his foot as the week goes on, we have to ice the joint every two hours and keep on with the anti-inflammatories and he has to go back on Thursday. Oh and he also has some very simple exercises to do, basically just to keep blood flow and movement to the foot. As I suspected the ones A&E gave us would have just aggravated the problem.

Finally, he is going to get him seen by a good podiatrist, as he said he has significant instability and pronation issues, which are causing the pain in his knees and hips.

He was appalled by the way the NHS has just let him fall through the cracks, refusing referrals for podiatry etc.

Long-term plan is to come up with an exercise plan to build strength around his joints, particularly, ankles, knees and hips, plus assess and if necessary, work on balance issues.

I am pleased ds is finally getting some help but furious that we are having to pay, when the NHS should be treating him.

We will get him put onto dh's company insurance policy next month and that will help, but in the meantime, it's cost us around £100 for treatment and appliance costs already this week and it's only Monday!

So anyway, we finally have a plan:

1. Continue with physio for recovery from the synovitis/impingement, see podiatrist for orthotics, build strength around specific joints and improve general fitness.

2. Referral to the Children's hospital for a) hopefully a more meaningful dx and b) finally some proper team/multi-disciplinary support for all the issues surrounding his JHS.

ouryve Mon 03-Oct-16 21:59:20

Resistance bands are a good alternative to weights - easier with weak hands, too, as you can wrap them rather than relying on grip. DH used them for a shoulder impingement and I bought some a couple of years ago for my own shoulder problems (and really should take them out of the packaging before they turn to dust!)

Any and all exercise that can be done safely should be done - I had to explain this to the GP who removed my meds, this morning - if I don't start the day with some good meds, I can't exercise and if I can't exercise, I end up in more pain and it's a vicious cycle.

I've been looking for helpful bodyweight exercises for my shoulders and neck, lately. It's hard sifting through the hundreds that there are for simple very low impact ones (because a lot labelled as low impact simply mean no jumping, when realistically, no I cannot lean up on one arm and not be in agony with a splitting headache for the rest of the day, that's how bad it can be.) If oyu can access private physio through your DH's insurance, grab the opportunity with both hands.

Ineedmorepatience Mon 03-Oct-16 22:10:26

Gee moose what a pain.

Its great that the physio is helpful but the cost is a pain!

Hope the wait for the hospital isnt too long!

imip Tue 04-Oct-16 07:12:07

I do think you'd get better support ultimately from a private physio. They can help you work out in their gym. Dd occasionally has 6 block sessions and she is now kind of on maintenance at GOSH physio every 6 months.

She's almost 10, so I'm waiting for the age when she can go to a gym herself or join a Pilates class etc, and hopefully make exercise more interesting. She uses both ankle weights and resistance bands, which is so sad at such a young age.

It was the consultation with a priv physio, who was a friend of a friend of Dh that helped us in realising what we could get from the NHS (of course, what she is entitled to!). If it's your GP refusing these, then you need a new GP. She gets podiatry and occupational therapy. The OT is important because if your dcs has trouble sitting/writing etc, they may entitled to help.

I also have a dx with ASD, I've had to fight fucking hard to get everything they need, and I know that I still have more to do. But, I do feel that we have nearly all dd needs, but daily pain will remain a constant feature of her life sad

moosemama Tue 04-Oct-16 09:58:25

Thanks ouryve (not seen you for ages). I actually have some resistance bands from the injury that caused my CRPS.

Thank you Ineed.

imip it was just one, particularly rubbish GP in a large practice. I usually refuse to see that GP, ut she was on triage duty that day, so it was that or wait 2 weeks for an appointment with the decent GP.

Interestingly, the physio assessment found that his hands aren't severely hypermobile, which I suppose makes sense, as he's never had any pain or problems with writing. He's worst affected in feet, ankle, knees, hips, elbows and shoulders. I forgot to mention the neck problems he has, but I'm pretty sure that's related as well. Even his initial Comm Paed assessment found his hips, particularly the left one to be extremely lax. Fortunately x-rays showed no sign of rotation or dysplasia (I have both).

I think the plan now is to get it all properly assessed and identified privately and to go for private podiatry, alongside requesting an NHS referral (I have googled and discovered the GP lied, there is a community podiatry service, including orthotics, at our local hospital). That way we can get him comfortable, come up with an appropriate exercise plan and we will be fully armed with the necessary facts to fight the NHS when we get the inevitable brush offs.

I'm crossing my fingers for his Rheumatology appointment opening the door to a proper team care approach. The Children's is so much better than our main trust hospital and once he's under their care I'm hoping he will finally be properly supported.

It's so wrong that we have to fight so hard, just to get what our dcs are entitled to. I feel really bad that I haven't fought harder for ds2. Every route I tried the door slammed shut in my face, we've tried GP, Comm Paed, Physio, OT even the School Nurse (who did refer to OT), but every single time we've reached a dead end and he's ended up with no support. I am so relieved we can at least go private now.

We're still fighting for ds1's transfer to EHCP. It was due at the start of Y9, but we have had the date moved several times, were promised it would be this half term by the LA (via school) and still no sign of it - he's in Y10.

Ds2 used to have private pilates lessons (paid for by my lovely Mum) but it just got too expensive. I wonder why there are no pilates classes for children. I used to do Callanetics as a teenager, was obsessed with keeping fit, generally sporty and highly active and am pretty sure that's why I didn't suffer as much as ds2 does. It's an uphill struggle with a boy that is a typical techie and has never had any interest in sport. He has just joined the table tennis club at school though - which is a start!

imip Tue 04-Oct-16 10:15:39

Yes, dd is quite sporty. She was crawling at 5 months and walking at 11 months, a great climber, always very sporty (not neccesarily the fastest or the best, but competent). The OT and physio said that this was what probably kept the pain at bay until she was 6. I'm contemplating ice skating lessons next, just trying to keep her interest. It should be low impact until she falls, right smile

We have the EHCP woes with dd2. Our application has just gone to panel. It's taken a long time to have the school recognise both dd1 and dd2 challenges, I really sympathise. We have a decent GP that basically kept saying if she is in pain we will keep referring, we don't want to see a child in pain.

moosemama Tue 04-Oct-16 10:29:50

Ice skating was one of my great loves as a teen - although I was actually told not to ice-skate, ski or horse ride because my rotated femurs put pressure on my knees. Of course, being contrary, ice skating and horse riding were my two passions! grin

Last night I was reading through a timeline of LA head-games and school lies and manipulation that dh put together for our SEN advocate when we were applying for ds1's statement. It brought it all back and I am dreading going through it all again with his transfer. It didn't help that the first time round I was very ill and being investigated for MS. At least thing time I know what's wrong with me, so I know how to pace and mange it and - after going private - am finally getting some treatment that helps.

There's only one GP worth seeing at our massive surgery and of course he always has a massive wait for appointments.

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