10 year old with joint pains

[cakeyS8rah]

The Doctors & Physio have struggled (failed) to diagnose my beautiful, once active and fit daughter, so I am turning to knowledgeable Mums for ideas. My 10 year old started with very painful ankles, then knees and is sooo tired. She is now also suffering headaches and dizziness. Blood tests show no inflammation. Does anybody have any ideas? I suffer from Lupus so we will hopefully get a Rheumatology referral soon but bloods do not indicate this. It is heart breaking to see the limitations and suffering in your child. I'm hoping there is a Mum out there who can identify with this? Thank you.
PS This is my first post, hope it is OK?!

Hi Cakey Might sound a bit left field but has she been tested for coealiac disease? Is an auto-immune disorder and she will be, as sure you know, 5-6 times more likely to develop an auto-immune disorder of one kind or another given is presence of auto-immune in family (your Lupus).

GPs --are fucking useless- often fail to test for Coeliac as are unfamiliar with it other than when presents with black and white gastric symptons even tho those symptoms only in fact present in the minority of cases (1 in 100 people have Coeliac but only 1 in every 8 IS actaully diagnosed - is woeful).

Reality is it can present first with Neuro symptoms (as mine did) ranging from headaches etc through to range of stuff - does she ever have balance problems or feel like the room is 'spinning'? Suggest you google each of her symptoms one by one alongside Coeliac in the search box and see how many correlate? Is the simplest of blood tests and the earlier caught the better the outcome (Neuro wise especially). There will always be fatigue simply due to malabsorbtion of food (eating gluten when you have coeliac destroys the villi - the little strands in the gut that food passes over and is absorbed by) and the lack of energy that comes with that, but alongside the fatigue can be the widest range of symptoms imaginable.

Suggest you do the google 1 + 1 per symptom as suggested above and then post again? Good news is that Coealiac is easily and fully treated by adhering to a strict GFree diet. HTH?

GPs are fucking useless even!

You might want to read up about POTS. My daughter has this along with Ehlers Danlos, would have thought physio would have spotted EDS though. One sign of POTS is take resting pulse rate, then standing rate, POTS causes rate to go up by 30-40 beats.

I'd second getting her tested for coeliac disease as joint pain, fatigue and headaches are three of the symptons. How long has she been like this? And did the symptons appear gradually or suddenly?

I would push for a blood test with your doctors as it's not uncommon in children. She need to keep eating her normal diet (don't cut out the gluten yet) until she's been tested though.

Thank you so much for your suggestions, I will definitely look into coeliac disease and POTS (I've no idea what that stands for!). Crikey, didn't even consider going down the gastro route, clearly neither have the doctors, so I am very grateful.
I knew Mums would have some suggestions!
Thank you xxx

Could be hypermobility syndrome (many medics now see this as the same as Ehlers-Danlos syndrome hypermobility type). My son has hypermobility syndrome (EDS hypermobility) but not POTS and started with problems aged 10. He has dizziness and nausea alongside joint problems and back pain. His hypermobility was NOT spotted by the hospital physios, nor the orthopaedic surgeon he saw and he had a lot of investigations over the course of a year before bone injuries were ruled out. Eventually he developed chronic pain syndrome and was referred to Great Ormond Street for that and was then diagnosed with hypermobility syndrome. So I wouldn't agree with stressed that physios would usually diagnose. Although I would agree that they should recognise it.

POTS stands for postural orthostatic tachycardia syndrome. Part of the problem there, as I understand it, is that circulation problems in POTS mean that if someone is sitting down and then they stand up the blood is still pooling at the lower end of their body. Happens to all of us I think, but when we stand up the blood circulation gets everything sorted. If you have POTS the heart goes into overdrive trying to cope with circulating the blood properly now you are standing and this leads to palpitations, drop in blood pressure and sometimes fainting.

Incidentally, a lot of people with Hypermobility syndrome/EDS have gastro problems and coeliac disease (or gluten intolerance without being coeliac) is not uncommon.

Thanks Runningtokeepstill, the physios did say she has hyper mobility - I thought that just meant she is very flexible. How is your son now? Was there a treatment plan? Another batch of bloods have come back normal but I am scared by one lady's comment that she had similar and she ended up being diagnosed with Lupus. I wouldn't wish that on anybody, least of all my own daughter.
xx

Hypermoblity means she is just very flexible. Hypermoblity syndrome (hms) means she gets pain with it. The amount of pain varies widely but can often begin around puberty. I don't think having hypermobilty automatically means your going to get hms, but it's definitely worth considering.

Has she had a sore throat? Rheumatic fever, though rare, can present as you describe.

The problem is lots of conditions can fit with a list of symptoms and you can drive yourself crazy worrying about it. If you haven't got the rheumatology appointment yet it might be worth ringing up to see where things are at.

Cakey my ds is still having problems as he has chronic pain syndrome and responds to most physical, and some mental, stimulae with an outbreak of pain. But hypermobility syndrome, being a syndrome, affects people in very different ways so it is hard to judge how it will effect your child by looking at someone else's. And of course you don't know yet if this is what is causing problems for your dd. As hippo says, it is possible to be hypermobile and not have the syndrome - pain is an indicator though.