Knee pains

[curra]

Hi,

 

M has been having knee pains since he was 7 or 8 years old, and no doctor has ever taken them seriously. They have never examined him to see what is causing the pains!! I have waited for 3 years for OT which never came. Lately (he's 13 now) he says that the pains are so bad that he doesn't want to walk or climb stairs anymore. I called the GP but she just gave me the number of a physio over the phone. The physio give appointments only for the same day and they never pick up the phone in the morning, so it is hopeless. Don't they realise that by the time they pick up the phone children are already in school?? I made an appointment with the GP for tomorrow and I need to be well prepared so that we are not quickly dismissed again with the usual "growth pains" or "lack of exercise " excuses. M takes a lot of medications and I'd hate to give him antiinflammatory drugs on top of it , but are there other options? Has anyone dealt with this problem before? What tests/ treatments should I ask the GP for my son? I will really appreciate if anyone who's had experience with children with knee pains, (other than arthritis) can give me some advice. <'>

 

Curra

[Cat]

I did see someone with my son about this and they said 'growing pains' It's not. My son is 9 and has been having pains in his knees for as long as I can remember. It wakes him up and I am often heating up those microwave pads at 3am to wrap them around his knees He likes me to squeeze his knee really hard when the pain is there because he says that it helps But he often needs me to do this for hours I truly wish I knew what this was but I also have a friends whose son also suffers from these pains in his knee - so I am now thinking that it's not so uncommon. Of course that does not answer your questions.

 

Cat

[oxgirl]

Hi,

 

M has been having knee pains since he was 7 or 8 years old, and no doctor has ever taken them seriously. They have never examined him to see what is causing the pains!! I have waited for 3 years for OT which never came. Lately (he's 13 now) he says that the pains are so bad that he doesn't want to walk or climb stairs anymore. I called the GP but she just gave me the number of a physio over the phone. The physio give appointments only for the same day and they never pick up the phone in the morning, so it is hopeless. Don't they realise that by the time they pick up the phone children are already in school?? I made an appointment with the GP for tomorrow and I need to be well prepared so that we are not quickly dismissed again with the usual "growth pains" or "lack of exercise " excuses. M takes a lot of medications and I'd hate to give him antiinflammatory drugs on top of it , but are there other options? Has anyone dealt with this problem before? What tests/ treatments should I ask the GP for my son? I will really appreciate if anyone who's had experience with children with knee pains, (other than arthritis) can give me some advice. <'>

 

Curra

 

 

Hi Curra, my son is 13 this week as well and, like yours, he has always suffered with knee pains and, unfortunately also like you, no-one has ever taken it seriously!

With my lad, I think it is a result of his gait. He walks quite erratically and his feet turn inwards quite a bit and I'm sure this results in his knees getting twisted. He takes no exercise other than walking, but he can't walk that far before he says his legs or knees are starting to hurt and it is quite a problem for him.

So sorry, can't offer any advice, but if you get any useful tips, etc., I'll be sure to take note of them!

 

~ Mel ~

[badonkadonk]

Hiya,

 

I don't know whether it is the same thing as your kids but I'm AS and have suffered really badly with "achey legs" or "restless" legs all my life. It usually gets worse in the evening and can become chronic throughout the night. I too like my boyfriend to press down on/pull my legs as this sometimes alleviates the pain.

 

But I haven't had to ask him to do this for the past few months as I've been taking Cod Liver Oil and this has helped reduce the sensation in my legs brilliantly. I still get achey legs sometimes but now it's perhaps 3-4 times a month rather than every single night.

 

Some others things that I still do when I get achey legs include taking Ibuprofen. I don't like taking tablets all the time, and I used to have to take them every night just to get to sleep, but now taking them 3-4 times a month isn't so bad. They really do help to ease the pain long enough for me to fall asleep. Bringing my body temperature down is also another must. I don't wear any clothes in bed and try to fall asleep with my legs outside my quilt. By getting my legs quite cold I become more concerned with getting them back under the quilt and warmed up because the cold seems to numb the pain briefly. If this doesn't work I have a cool shower and hold the shower head on the backs on my knees or I kneel in a shallow bath of really cold water. Again this numbs my knees enough for me to settle down into bed and drift off. Other things you could do are try a cooling spray. It comes in a can like a deodrant and squirts out much the same. I spray this all around my knees and particularly on the backs of my legs. If I remember to buy some I also use the cooling pads that places sell for you to put on your head when you have a headache or migrane. I put one on the back of each knee and it has the same numbing effect.

 

I'm tempted to say that this isn't an ASD thing though because my mum has exactly the same problems. There is a history of arthiritis in our family though so it could just be a genetic thing, problems with joints etc because it's not just my legs that ache. On a really bad night I get achey elbows as well But the same technique seems to work with my elbows as my legs.

 

Failing all of the above you can usually find me marching back and forth in the living room at 3am. Or jumping up and down or doing stretches. Exercise seems to help, particularly running really fast or moving the joints rapidly to get the blood flowing properly again.

 

Hope some of this helps and if your kids find that heat, not the cold, helps then reverse the methods used above. Have a hot shower and hold a warm shower head on the backs of the knees or kneel in warm water. Place a hot flannel on the backs of the legs or use hand warmers that you usually put between your hands on a cold day.

 

Emily

xxx

[Nic m]

Hi Curra, i dont know if it is the same thing but i am awaiting an appt for the podiatry dept regarding my daughters leg pains she gets very bad pains in her hips, thighs and ankles.she tells me her hips click and her bones are sore.I have recently found out this is down to her hyper mobility (loose joints) and her very flat feet. I have started giving her a multi vitamin and trying to increase her intake of oily fish etc. we go swimming and i will massage her legs when they are very sore and a bath with lavander essential oil seems to help.

Good luck

Nicola

[curra]

Thanks for replies!! Emily, very goof advices! <'> <'>

 

Well, this evening I made M walk along the hallway observing his gait and he does seem to walk with his knees too close together though he says that he can't help it. He tried not to and he looked like a robot. His back also hurts a lot but I suspect that could be due to his sitting and drawing all the time. I forgot to say that M also walked on tiptoes for years until he realised that his peers were teasing him calling him a penguin and other things, so now he tries hard to step using the whole sole and he doesn't look relaxed when he walks.

I'll post again tomorrow after the appointment and let you know if there was anything new.

 

Curra

[curra]

I meant good advices. My cat was trying to type with me...

[kelima]

my daughter had (s) similar knee + joint pain incl knee 'locking out' went through lots of tests finally decided it was joint hypermobility. also recently seen podiatrist cos had problems with toe 'locking out' and she found she had weaknesses in ankle joint and wasn't positioning foot correctly plus had one leg longer than the other.

[gladysmay]

I have seen something on this somewhere, that people on the autistic spectrum can often have hypermobile joints but does not seem to have been explored much.

[oxgirl]

Thanks for replies!! Emily, very goof advices! <'> <'>

 

Well, this evening I made M walk along the hallway observing his gait and he does seem to walk with his knees too close together though he says that he can't help it. He tried not to and he looked like a robot. His back also hurts a lot but I suspect that could be due to his sitting and drawing all the time. I forgot to say that M also walked on tiptoes for years until he realised that his peers were teasing him calling him a penguin and other things, so now he tries hard to step using the whole sole and he doesn't look relaxed when he walks.

I'll post again tomorrow after the appointment and let you know if there was anything new.

 

Curra

 

 

Good luck with the appointment. We saw someone years ago, when J was little, and he said there was a lot of mobility in his joints and that this would kind of stiffen up or reduce as he got older, but it still hasn't. Maybe it's something similar for your lad.

 

Hope you get some useful answers. <'>

 

~ Mel ~

[curra]

The GP checked his knees and it's not the ligaments but the knee caps (hope it's spelled that way). He said it was growing pains and gave him Ibuprofen .I insisted that he walked with his knees too close together and he made M walk along the corridor. M walked perfectly which he did to impress the GP. He never gets it that if he goes to see a doctor he has to tell where it hurts and not hide it. I said that M walked on tiptoes until he was 11. The GP asked M whether he noticed it when he walked on his toes, M said yes. Then the GP praised him for being so tall and said "take care and bye!".

 

It was a waste of time.

 

 

Thanks for the replies. I'll keep posting in this forum whenever I need advice!

 

Curra

[Kathryn]

My daughter has been diagnosed with hypermobility syndrome. She's very bendy and has pain in all joints. Because her connective tissue isn't strong enough to do the job it should, her muscles have to work harder to hold her together, hence the fatigue and pain - that's how it was explained to me. There is anecdotal evidence of a link to ASD but nothing conclusive - I don't think there has been much research on it.

 

Curra, I hope the appointment went OK and you got some answers.

 

K x

[curra]

Thanks Kathryn, <'>

 

It could be something similar but my son is not agilel. He prefers not to move much, if he has to run he gets tired after a few metres. He was aways like that so it's not laziness since todlers enjoy moving and running. He did too but he always tired easily.

 

No answers from the GP, unfortunately. I'' try again with the physio, maybe they can help more.

 

Curra

[Kathryn]

Hi curra,

 

L was referred to a consultant rheumatologist who gave the dx of hypermobility. She also saw a neurologist. It might be worth going back and asking for a referral to someone more specialised.

 

K x

[oxgirl]

Thanks Kathryn, <'>

 

It could be something similar but my son is not agilel. He prefers not to move much, if he has to run he gets tired after a few metres. He was aways like that so it's not laziness since todlers enjoy moving and running. He did too but he always tired easily.

 

No answers from the GP, unfortunately. I'' try again with the physio, maybe they can help more.

 

Curra

 

 

So sorry your GP visit was a waste of time and that they offered no help for this problem, which does have a big impact on your son. I know, because I have the identical problem with my lad. It's true what you say about going to the GP. When we've gone and the GP says, 'walk from here to that chair', it's impossible to see the problem in the same way that you would if he was walking down the street. I think the attitude is, he can walk, so what are you complaining about!

Take care.

 

~ Mel ~

[curra]

Thanks, Mel.

Yesterday he had knee pains again in the evening and it just took me to ask the stupid question, "Why didn't you show the doctor how you usually walk?" for him to meltdown. He screamed saying that I don't understand him, he fell on the floor and said that his knees couldn't hold his body, so I helped him to bed. He's now poorly with a cold. I know that he doesn't make it up and his knees really hurt him and I'm positive that he was never aware that he walked on tiptoes until other children began to ridicule him. But it's no use trying to explain all this to the GP. If I had the means, I'd take him to a private consultant

 

Curra

[oxgirl]

But it's no use trying to explain all this to the GP.

 

(*nods*) Yes, I know curra, they just look at us as if we're mad or imagining it.

 

~ Mel ~