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9 year old years of joint pain not getting any answers

(19 Posts)
Kvec1507 Thu 11-Jan-18 16:29:00

Hi all

I really need, probably some reassurance more than advice.

My son started getting muscle aches in his legs when he was about 18 months old.
We put it down to growing pains then a couple of years ago they got more severe and frequent and started in his back and neck. He's now 9.
He had his vitamin d checked which was all fine.
He then had pains in his heels so was referred to physio. They said all his muscles in the bottom half of body were really tight and tried exercises. He's also flat footed so has insoles to help this and this solved the heel pain.
Hes now been seen by occupational therapists, orthopaedics and more recently rheumatologists and they tested him for arthritis which was negative.
He now too has a problem with really dry eyes and it's really affecting him.
Hes been referred to the eye Dr.
Anyway I was shocked that the arthritis Bloods were normal as he fit every symptom and now I'm at a loss as to how to help him as the Dr's will put it down to hypermobility which he has in the top part of his body.
Where do I go from here?
Am I missing something?
Hes in pain daily but all tests so far are pretty much normal. (he had low ferritin so he's on iron medicine)

mybreastsarentbest Thu 11-Jan-18 16:30:26

Has he been tested for Celiac? What they sometimes call “silent Celiac” can manifest itself in all sorts of unintuitive ways.

I hope you can get answers soon.

GreyCloudsToday Thu 11-Jan-18 16:42:39

Hi Kvec

Has he only had blood tests for arthritis? In juvenile arthritis it is possible for rheumatoid factor to not show up in regular bloods. If you are surprised it's not arthritis you should ask again and make sure other tests have been done to fully rule this out.

Kvec1507 Thu 11-Jan-18 16:44:10

I think only arthritis Bloods. They did crp esr a few others and ANA and another one which I can't remember off the top of my head.
They haven't done celiac, he has no digestion symptoms though...

mybreastsarentbest Thu 11-Jan-18 19:12:38

It’s possible to have Celiac without the digestive symptoms, in fact they now think that a portion of people don’t present with digestive symptoms. That’s the “silent” Celiac that I mentioned. It’s just regular Celiac but when they discovered how many people had it without the traditionally expected symptoms, they started referring to that phenomenon as silent Celiac.

MyBrilliantDisguise Thu 11-Jan-18 19:14:37

He doesn't have psoriasis, does he? And has he ever had a tetanus jab?

Kvec1507 Thu 11-Jan-18 19:28:38

He doesnt no. That's the skin condition isn't it? No skin problems whatsoever. He's up to date with all imms.

MyBrilliantDisguise Thu 11-Jan-18 20:00:59

OK, I was just wondering whether he had psoriatic arthritis. I have it and I've only ever had the odd tiny patch of psoriasis. My friend had it after she was bitten at work, had a tetanus jab which gave her psoriasis and then arthritis which came from the psoriasis. Within weeks she couldn't walk.

I really hope they work out what's the matter with your son.

Kvec1507 Thu 11-Jan-18 20:32:23

Thank you.

I'm at the end of my tether with it. I don't want to be one of those pushy mums but deep down I know this has gone on for far too long and can't stand seeing him in pain.

FancyPuffin Fri 12-Jan-18 10:06:20

It's fairly rare in children and more common in women but has Sjogrens been considered?

Info

BarbarianMum Fri 12-Jan-18 10:24:53

It def sounds auto immune. Juvenile arthritis would be my first guess but I would second the coeliacs query. My mum has coeliacs and also a very painful dry eye condition - both auto immune. Are you under an ophthalmic consultant?

Kvec1507 Fri 12-Jan-18 12:57:30

We received a letter today from the rheumatologist and she said her first opinion is that of joint hypermobility syndrome but will reassess him in a few months.
She has referred him on to an ophthalmologist so fingers crossed we don't have to wait too long to see them.

I don't think as far as his joints are concerned that they will consider anything else which worries me but I think should I just accept that that's what it is. It's hard as there's nothing that really helps that.

Hummingbirdmama Fri 12-Jan-18 13:23:00

So sorry to hear of everything your son is going through it must be very upsetting for you both. I had identical complaints to your son as a child and young adult, aching all the time and heel pain as well as additional gastro issues, inflammatory responses with eyes/hives etc... As an adult I was eventually diagnosed as having hypermobility and sent off with a leaflet from a rheumatologist at one of the large London teaching hospitals. I felt like I had been completely fobbed off.
After a fair bit of research, I realised I do suffer with hypermobility but its just one feature of the more complex Ehlers-Danlos syndrome which effects far more than just the joints. After putting up a fight with my GP I was referred to see the specialist clinic at UCLH. They specialise in this relatively unknown condition and I was shocked to find that surprisingly few rheumatologists know how to treat it. Anyway they referred me to physio, biomechanics, gastoenterology, and ent and its made a huge difference to my quality of life.
Just thought I would share my experience on the off chance its of relevance to you...hypermobility can mean far more than double jointedness.

Kvec1507 Fri 12-Jan-18 13:36:34

Thanks so much for your reply (and to all of you as well)
I feel like there is more to this than meets the eye. I am desperate to find out what is wrong with eyes and hoping this provide an answer being a link to his joint issues.
My worry as I've said as that it's just this is as far as investigations go. I obviously don't want there to be anything wrong but I also know my child who never gets sick and just always has some kind of pain. I have noticed he now stops telling me about them and I can see it in the way he moves and struggles to walk, he's learnt to cope with it and guard himself which he shouldn't have to do.

Abitlost2015 Fri 12-Jan-18 13:44:02

As I read your OP it may me think of autoimmune issues, does he have any skin issues? Joint pain and dry eyes (but usually some other symptoms too) could be consistent with scleroderma. Maybe ask the rheumatologist to consider this diagnosis?

Frazzledbutcalm Sat 13-Jan-18 10:30:05

It definitely sounds like hypermobility ... myself and 3 of my dc have this, we all present and suffer differently.

There’s no such thing as growing pains .... the pains are due to legs, hips, ankles, muscles etc not being in the correct position/working correctly as the body grows.

We see a private podiatrist for insoles, purely because the insoles we get there are WAAAAYY better than the NHS ones we’ve been given.

Take a look at the special needs boards here for advice re hypermobility. Also look at hypermobility.org specialist website.

One of mine suffers with terrible dry eyes and dry skin under his eyes. Been put down to eczema type problem, and dust and grass allergy.

moosemama Wed 17-Jan-18 13:49:30

Joint Hypermobility Syndrome is now called Hypermobility Spectrum Disorder, since new diagnostic criteria came out in 2017. As the name would suggest it varies massively in severity and for some like my ds, who is at the severe end of the spectrum, it can be a multi-systemic condition that affects just about every system in the body. If you are being told it’s JHS, that tells you that the professional involved is not up to date with the condition or it’s treatment. Likewise if they tell you it is just joint pain that he has to learn to live with, find another professional with a better, current understanding of the disorder.

It’s worth noting that EDS UK now support people with HSD as well, since the criteria for what used to be EDS 3 (Now Hypermobility EDS or HEDS) has been tightened up a lot (my son was just one point off a HEDS diagnosis, despite other family members have a clear diagnosis).

Rheumatologist that are not up to date will often only carry out a quick Beighton test to see if there is any hypermobility, but fail to realise that the hypermobility can be most pronounced in areas outside of that narrow assessment. The new diagnostic criteria addresses this issue.

Decent orthotics and gentle, progressive physio with a senior level physiotherapist who is up to speed on the condition and understands the best way to work with patients who have it is vital. People with HSD decondition very quickly and it can be a very long, slow, painful road back to full strength. My son ended up deconditioned after multiple injuries back to back and poor advice from orthopaedic consultants. He has been having physio for about 18 months now and is still classed as having global weakness, but is a million times better than he was this time last year. Unfortunately they do have to keep going through their physio when exhausted and sore in order to rebuild their strength, because they need stronger muscles to support their joints where their connective tissues can’t. The trick is to modify exercises and exercise plans so that they can keep going, even if it has to be to a lesser extent for a while.

My son has had dry eye issues and was on false tear eyedrops for a prolonged period. It’s worth getting him checked for blepharitis, as if the eyelid glands can’t lubricate the eyes properly you will get dry eyes. Blepharitis is common in HSD/EDS and often just requires daily lid cleaning to manage it.

Re the tightness in his lower body. My son is very hypermobile through hips, knees, ankles and feet, but had extremely tight hamstrings on examination. We were told this was his body’s way of trying to compensate for the hypermobility in his joints and stabilise his body. Again, this is fairly common with HSD and EDS. He was always accident prone and constantly rolling his ankles, but started to get increasing problems from the age of 8. Then, when hormones kicked in in secondary he started to dislocate and developed lots of the multi-systemic issues. If you can, get him going with a good physio now to build up his muscles, as this will really stand him in good stead when his hormones start to kick in. Swimming and/or Hydrotherapy are also really good.

We haven’t had the problems others have mentioned re NHS Orthotics. We paid for private ones initially but it wasn’t financially sustainable with the level of correction my son needs. He is now under the orthotics department of our local children’s hospital and they have been brilliant. They have worked with him with different types of orthotics to try and get his support right and are now planning on providing him with bespoke Dr Marten boots with built in orthotics.

Sadly it’s also common for people with these conditions to be really struggling but have all their test results come back as normal. Two of my dcs are going through this at the moment and their drs are yet again perplexed as to the underlying cause for their symptoms.

Do have a look at the HMSA and EDS UK websites as there’s lots of information out there that might help.

Kvec1507 Wed 17-Jan-18 14:04:07

Thank you so much for all of that information.
We ended up taking him to the urgent eye hospital at the weekend and he was diagnosed with blepharitis. With steroid eye drops and cream he's improved dramatically in just three days. We are aware though that this is a chronic condition that will continue but at least now we know what to do. We had been fobbed of by an Optician, a GP and the rheumatologist on what the ophthalmologist said was a very obvious condition.
This is my biggest frustration that I am putting my trust in people but never know who to believe or when to fight for more investigations.
We now have a wait of 4 months before we go back to the rheumatologist and I am expecting her to say yes he is hypermobility continue with exercise and goodbye.

I'll certainly look into all the info you have provided and probably a private physio.

moosemama Wed 17-Jan-18 14:23:52

Glad I could help.

Fwiw, yes, blepharitis is a chronic condition, but my son hasn’t had any problems with his for years. (Actually I say that, he has just started having some issues over the past couple of months, but he is nearly 14 and hasn’t had any issues since he was in early juniors up until now. I suspect he has been a bit ‘teenagery’ about his cleansing routine and that’s what caused it to flare up.) Once the initial flare has cleared, he should just need a daily lid cleaning routine that becomes second nature. When my son was younger we used to buy lid-care wipes, which were pricey, but worth it as it made the whole process quicker and easier for him.

I totally understand your frustration. It is extremely frustrating dealing with so many professionals that are not up to date, but think they know best. The constant fight is exhausting, but sadly it is the only way. There are some high profile campaigns underway to try and raise awareness of these conditions within the medical community and stop them thinking of them as rare and therefore unlikey, because they aren’t rare, they are just underdiagnosed.

If you are able to go private I would recommend seeing Professor Rodney Graham and Dr Anand Saggar at their clinic in London, as they will be able to give you a definite diagnosis if appropriate and are leading experts in the field. It’s pricey, but worth it when your child is in pain and not getting the help they need.

Also, I don’t know where you are based, but look into The Hypermobility Unit at St John’s and Elizabeth for Physio. They don’t see paediatrics at all other than for physio these days, but their physios can assess and come up with a plan that you can work on with a senior physiotherapist closer to home and they are usually happy to advise your physiotherapist. Again, not cheap, but worth every penny.

Let me know if I can be of any further help.

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