11yr old leg ache/ pain alot

[Keewro]

Hi,

Little advice needed about my 11 yr old daughter, ( 12 in june).

She has always suffered with growing pains from the age of 4 until prob last 18 months , she would always wake in the night in need of some paracetamol and a massage.
But for the past few month her achy legs have been during the day, not always necessarily after p.e etc, not always in the same place or leg, mainly in her shin and the bit where your ankle meets your shin at the front, never bad enough to give a limp, paracetamol and a good rub do make it go away, I'm just worried that its during the day now? But like I said it goes away, never in the same spot or same leg it seems to jump about , oh and heel pain that's a new one from the last few days.....
Now what has prompted me today is that when she was on her way out of school yesterday she said her knee just gave way for no reason, and now is painful behind her knee when she walks.
I had her laid on the sofa last night I was flexing her leg and putting it in all diff positions, the mobility in the leg is fine no pain, she can push with that leg against my hand that's fine no pain, it's just when she stands up, this morning she said it was gone, but just before setting off for school she said it started t hurt again.
One last thing she has been complaining of stomach ache lately, pretty low down so I am thinking this is just a sign her period is on it's way? As shes is already going through puberty and pretty sure this is the next step.
Now all I have mentioned above is never screaming in agony pain, its achy pain that does go away.
So i just want to know your guys opinion? Or any experiences of your own similar
Take to gp? See how it goes?

I'm sorry for the long message 😊

Ita quite scary though if I'm honest to think one of your children possibly has a syndrome, can I ask, does it affect your child's day to day life apart from the pain -aches? And what do u mean cardio issues? X

Also, not to panic you, but definitely a reason to ask the doctor is that osteosarcoma in children is often dismissed as growing pains and causes kids to wake up in the night in pain. I’m only more aware of this as I work for a cancer cause. It is incredibly rare.

@Keewro I have POTS symptoms controlled by Ivabradine. (Tachycardia, dizziness, sweating, pre-fainting).

Dd has had her symptoms to various degrees since birth so for us it was a relief to have them explained, linked together and named. All her diagnosis means is that she can now access the appropriate medications that help some of her symptoms because the hospital prescribed them and wrote to her GP. Her Physio gives her appropriate exercises which work well. She’s at Uni and just gets extra support (orthopaedic chair and so on) but on a day to day basis nobody would know she has anything wrong with her and it has no effect on her brain, that’s for sure! She doesn’t tell people except close friends because it’s just the way her body is wired and she can self-manage her condition now so she doesn’t think about it much!

The other reason I’m advising you not to panic is that your dd might not have a “syndrome”; she might just have hypermobile joints and growing pains which can be managed with exercise, heat and physio.

Definitely get your dd checked but (and I know it’s not easy), try not to let your worries race ahead of you. Lots of children have hypermobile joints and just need help to strengthen them. Having full-blown H-EDS is quite rare.

I am hypermobile and have a hole in my heart and have to have regular heart checks.
I know of a little girl that had leg pains and it turned out to be cancer.
Definitely get her checked again.

I know this post is a couple months old but I thought I'd give and update and hopefully maybe some advise?
I took my daughter to the gp, she suspected hypermobility syndrome, but wanted to get a blood test, anyway , the results and in, and everything she tested for where normal apart from the RF- rheumatoid factor , she tested positive for this, we are in to see the dr again Thursday, but the wait is driving me insane! What is it? All sorts are whirling round my head- EDS , lupus, shorten, more than likely RA though, I'm absolutely gutted.

And I know that once we are at the dr I will be still nons the wiser as I'm presuming itll just mean more tests 😢

Sjorgen **

don't be gutted.
a diagnosis means treatment can start in earnest and your lovely dd can hopefully be painfree and active soon.

You prob wont see this but I wanted to ask, is your daughter rf posotive? X

Thankyou for your reply, it will be nice to finally know, it's just my bloody brain wont shut off x

I have H-EDS, and I started around 11 with symptoms (my parents say I had pains before but it ramped up at puberty) and as I've got older the pains have spread and got generally worse - not to say your daughter's will though! Make sure she keeps active and strong :) I never had blood tests to diagnose hypermobility, it was always done through physical/Beighton type tests. Keep your eyes open for dizzy spells/fainting (or if she says her eyes have gone black but she's okay) as that can be a symptom of something called POTS (I can't spell the full name of the condition, but Google it and it will come up lol!).

Good luck, she'll be okay! There's loads of oddly bendy people about, she's in good company!

I'm hyper mobile and I had this issue at the same age. When you're hyper mobile you either don't produce enough collagen or you provide a different kind... One or the other, I can't remember. But anyway that's the reason for the joint pains. Take her to the doctors to find out the extent. Mine said to make sure I keep myself fit and flexible.

We have been to the dr, had bloods done, rheumatoid factor came back posotive, so we are back in to see the dr on Thursday

Glad you saw the GP, good luck OP

OP when I read your post your DD's pains sounded very like what I used to have. I am 40 now and mine started about 10 years ago. I couldn't find out what was wrong with me and the pains seemed too varied to pinpoint to anything specific. I was tested for autoimmune diseases a few times but all came back negative.

Last year I was eventually diagnosed with psoriatic arthritis. The rheumatologist did a physical exam and said I have a lot of hyper mobility in my joints particularly in my hips, knees, ankles and feet and he said this would be contributing to my different pains.

I started on methotrexate 10mg per week last September and I am doing brilliantly on it. No side effects only being pain free. I used to be exhausted tired all the time and that is gone too.
I am very active and part of my regime is regular exercising and going to a physio every 6 weeks. I have been told that it is essential to keep the muscles around the joints strong to increase stability in the joints and reduce pain.

I hope your DD gets an answer soon and I can tell you from my EXTENSIVE (!) research that there is amazing treatment for autoimmune diseases now.

I take a multivitamin with magnesium in it and I also take Turmerix to help the inflammation that comes with an autoimmune disease.

Good luck

Thankyou for your replies, they pit my mind at ease slightly. I just hope its nothin super serious x

Just an update : just got back from the dr, to say I was a shaking mess is an understatement! Obv daughter couldn't tell tho.
All her other bloods where perfect, even tho inflammatory one 🤔 anyway as u know her rheumatoid factor was very high, she is being referred to a specialist, there is a small umbrella of things it could be but with her symptoms it's more pointing towards polyarticular juvenile rheumatoid arthritis 😢
I was hoping they would tell me the rf positive was a fluke and didnt mean anything x

also have a look at crmo which is a type of chronic inflammation of the bone.

Hi thanks for your reply, wouldn't this show up in her inflammatory blood test, and is this crmo rf +? X

crmo doesn't always show up in blood tests.
some dc have only slightly elevated inflammatory markers.

Ah right, prob doubtful she had that then because her inflammatory was normal x

Have you checked her vit d levels? Can bring about bone pain. I get bone pain, take vit D and bone pain is gone. If you are in the Uk she would have had less vit d over the winter.

I dont think its vit d, as she is rheumatoid factor positive x so it's some kind of auto immune - all pointing towards polyarticular

Hi. How’s your daughter now??

My daughter is suffering pain in her joints (hands, knuckles and wrists, and ankles). She says they’re stiff until she moves them to pop them and free them. Does this sound similar?? We are seeing the gp on Thursday

I had something like this growing up, it was irritable hip, and one leg would grow quicker than the other, stop, then the other would catch up. I remember a crazy amount of painkillers but one doctor said milk daily and red meat weekly. We switched to that and it helped a lot.

Oh I still have hyper mobility but no pains now