my 3 year olds symptoms are completly different.... & I must admit this sometimes worries me that they have got his diagnosis wrong (anyone elses experiences would be great to hear??????)
He is aparently about a 9/10 for bendiness in ALL joints,& a 10/10 for his ankles.......but im pleased to say that (for now anyway) he has never had ANY dislocations....to look at him & the way he walks etc.. you would never guess he had a problem.
My sons main symptoms/problems vary from day to day- week to week.... his main problems are extreme fatigue (despite 12/13 hour sleeps)- he is in bed by 5pm every night & wakes in the morning quite often completly unrefreshed, VERY grumpy & looking really pale. He will then wriggle constantly, sometimes to the point where he dosent stay still for more than 2 seconds, however he will just lay around, changing positions constantly...& whinging & being difficult....as the day goes on, he then gets more & more wiggley, & almost manic....he will get games out, then move to the next thing, then the next thing, nothing keeps his interest & he just gets sooooooo bad tempered & is extreemly difficult to deal with...he WANTS to play, but just cant handle it. We can see he is completly knackered, but he just keeps wiggling & just wont give in.. he says his wiggling makes his hurt go away....we have ..on days like this, tested him be giving pain relief..& within 40 minutes, he has COMPLETLY changed..he turns from the devil child, into our child we know & love & is a complete angel!?? that proves to me all his behaviour is caused by tiredness & pain???..however if you ask him if he hurts, he will often shout at you & say he dosent want to speak.
He can actually go for days without even touching a toy..just making a pest of himself being naughty... one day, he was crying about his shadow!!!????? seriously, his shadow was annoying him & he completly lost the plot over it..he just becomes so emotional & touchy on a bad day..
Other days, he can be really tired & not wriggle atal..just lay around like a zombie.. i think, these days, the pain is not too bad, but the fatigue is still massive?
Other days/weeks he can be a gorgeous, happy little boy, he will walk & walk, be so loving & agreeable & will just be an angel child
... the difference is amazing! these periods can last for weeks... then CRASH..hes gone again.. & the GONE times can last weeks!!!!!!!!!!! & are now..unfortunatly becoming more & more often,,, we are having a completly rubbish time at the moment... & are just patiently waiting for a good period (please God it comes soon!?)....
also, when hes really bad, he often wets himself, he says he dosent feel it coming & hes so sorry about it... when hes having a good period, he NEVER EVER has accidents?
He attends nursery twice a week, for a period of 2 hours only (GOSH say this is the max he can do) & the even on bad days the nursery can prove a great distraction, & hes doing really well.. however, the teacher tells me on certain days hes soooooo wiggley & ALL OVER THE PLACE! often needing one to one attention.. he will tell her his legs hurt & just be a complete pain in the bum... often laping the room??!! other days, she says he's been fab....nursery agree that hes had more than enough by the end of the 2 hours & say they see him dwindling as the session goes on.....
I have found it very hard to explain to them (despite Sue saying this behaviour is normal & how a 2 year old deals with constant pain) how this illness affects him... THEY think if a child is tired & in pain that they will lay down & go quiet... My son is quite the opposite, he often goes manic & naughty & goes into fidget & wiggle overdrive... they DO NOT find this easy to understand.. I often feel challenged by them... do your children act like this when bad?
I pick him up in the car, on a bad period he will not even speak to me in the car & just weasle non stop for the rest of the day even though hes not been 'too bad' at nursery (it seems you can only distract from the pain & tiredness for so long, & it also seems that as soon as his stops the movement & is sat still in a car seat, the pains/stiffness or somthing really must kick in????? I dont know, he will not discuss it).
I would also say that most mornings, i can tell, within the first 30 seconds how the day will go... its in his voice.. he can wake up with such a whingy tone (despite a matheron sleep) & you just know you are in for a hell of a day....he will not get out of bed, saying he cant & will just whinge. I dont know if the pain wakes him & hes stiff or somthing?... other days, hes all chirpy, jumps out of bed, comes into us, kissing & full of the joys & you know its a good day...
I have also notices occasional swelling of his knees???? this worries me......Sue says this can happen though? & tummy aches sometimes, quite severe after a meal.
last thing... i have discovered, that no matter WHAT TIME my son goes to bed... when hes having a bad spell, he wakes sooooooo early..at around 5 am!!! we have kept him up later (which is extreemly hard as hes shattered by 3pm!) & even with a 9pm bedtimes he will wake at 5am!! we tried day naps.. the lot... 5am it is ... do any of you have this with your children?
do you think the pain/weird sensation or wiggling waken them? As when hes having a good period he can sometimes sleep till 6.30-7 (still early i know,.... but better than 5!!)
sorry to go on.. I just wanted to let you know how it is for us & am desperate to hear from others how this affects their children & this young age?
as its so very hard to understand/discuss with a 3 year old how they are feeling (despite my sons speach being like a 5 year olds)... & i must admit... deep down, i just feel there is somthing, another condition in addition that they are maybe missing
anyway...bye for now.. hope to hear from some of you soon