Tinkerbell
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FallingMy son is now two. He has a very very rare condition, as a consequence his gait is off ... the amount of falls he is having is unreal.
His eye consultant was concerned about the walking, falling and bumping into things so referred to appliances. No surgery or glasses can correct his line of vision. They didn’t think there was a need - so we didn’t get an appointment!!!
At his last physio appointment I mentioned his gait and falling and she didn't think it was a problem.
The other weekend we had 25 falls in one day - luckily with no serious injuries. So, I got the HV in to see him - while she was here he bumped into the doors, walls and kept falling over. We stated our concerns and she agreed the falls are unacceptable cos' there only going to do real damage to his head if left unattended.
Anyway to cut a long story short - At my request the physio came to the house - like all children when they are in there own environment (instead of a huge consultation room) they are at ease. She walked in the door and he comes trundling around the corner and BUMP straight into the wall, BUMP straight into the door, BUMP straight onto the floor - she couldn't believe she'd never noticed his gait and falls before. I tried to explain that if a visually impaired child is in a large bright empty room (esp him) they can locate and track a focal point to go to.
Anyway 6 months later (from original concern) and lots of falls behind us we are finally getting a referral to appliances for a helmet to protect his head.
I don't want him to look any different to other children but I figure if it saves us / him head injuries and trips to A & E then it may be worth it.
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pixie
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Hi Tinkerbell,
I can fully understand your reasons for wanting B to not appear any different to other children his age but also the need to protect him from head injury.
Good on you for persevering with getting an aide to help with his falls.
I must admit to not being very up on aides for children with visual problems but is there a way to stop him running around so much?
I know he's only young so a very natural thing for a child of his age to be racing around all the time.
What I mean is a walking frame of some sort to use in the home to slow him down.
It would only be a temporary aide as once he gets older he will slow down a bit especially as he will learn for himself to prevent himself falling so much.
It could be made into a sort of fun thing for him in the hope that he will use it indoors.
I know I've probably got this all wrong and it's the last thing you would want for him so forgive me if I'm way off. But it maybe something that at least would prevent some of his falls in the home.
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Tinkerbell
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You are not way off at all.
They don't make frames small enough for his age group ... but we had some sort of walking frame originally to get him on his feet, just the normal push along thingy-me-bob but weighted down with musical things on the top to encourage him to get on his feet and play.
It did the trick and got him up. The only way to slow him down or stop him to to strap him the the chair - which we don't won't to do if we can possibly help it.
He is getting to know when it is safe for him ... when he very unsteady he goes back to crawling, but then because of the head tilt he bangs into things. Can't win really
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myra
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there are some nice padded helmets on the market these days,they are similar to those worn by rugby players but start really small they come in lots of colours blond coloured, dark hair coloured and nice blues and reds black.
at least now adays they are nice 32 year ago when my garry was needing one for his epilepsy the ot made them at the time with pipe insulation and bandages a right sight i'll tell you but i work in special education now and at least 6 of the primary department wear helmets and they dont stick out like a sore thumb.
hope that you manage to get to the bottom of why is is falling over all the time. is there a stiffness with his gait or is it just an irregular step.
myra
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Tinkerbell
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Hi Myra,
My son’s condition is a funny one ... its called Paroxysmal Tonic Upgaze plus ?
In layman’s terms - he's visually impaired (eyes like to be in the top of his head and they bounce like balls  ), has a myelin deficiency (which repairs on sleep) and cerebella ataxia, however, no scans show up the ataxia. His optometrist, neurologist, paediatrician, and geneticist are all in the same mind that yes his gait is ataxic.
We have been told there are only two children in the world with the +? Condition - that’s mine and my step-son and there is no genetic test available to detect it and no treatment to ease it.
One of the main problems is that the condition is not always present! Some days are better than others with the gait and the eye rolling he adapts to during the day by tilting his head to accommodate it – until his head is on his chest.
Makes daily living fun  – with the eyes …he can’t bring his eyes to look down or see past his lower nose … so he head tilts. We have to make sure all the floors are clear of clutter, and steps are fun!! Good thing them reins - stopped him a few times hitting the deck while we've been out
We have looked at buying one priviatley but they normally start at the age of six. One company has offered to cut it down for us, but they couldn't guarantee a perfect fit.
Supposedly appliances are going to make us one!!! If it is anything like my step-sons inserts for his shoes then he’ll be wearing a plastic crash hat with sticky foam inserts. I can see a lot of home decoration and padding going on 
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Speeds
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Hi Tinkerbell
Welcome form me.
Your son's condition sounds extrmely interesting and very difficult to manage.
I may be way off here and it is past my bedtime so plesae do not take this the wrong way if I have the wrong end of the stick.
I cannot help with the helmet thing but I cannot believe that thre is not one made for childnre of your son's age.
But, WRT his gait and eye position, can someone not design something similar to a periscope for him so that he can see better or does his eye postion in his head dictate his head position?
It must be so frustrating for him and extremely hard for you.
Do let us know how you all get on.
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Tinkerbell
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He is our delight, nothing phases him and he's always smiling (unless he can't have another biscuit). We manage the condition really well and he is growing to accommadate it (thankfully)
The line of vison dictates the angle of the head. Sometimes his eyes are perfectly in line (for about 1 hour in total all day), but when the condition kicks in the head begins to tilt to accommadate it. By tea time his head will be resting on his dinner bowl so he can see his food.
Hopefully appliances can make us something decent and colourful for him
Trish
xx
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myra
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my garry is ataxic but not the plus.
has he been tested for dystonia think thats how you spell it. its commonly known as clumsy child syndrome, although we know its not.
if appliances make him a helmet please you tell them what you want as sometimes they are dodgy to say the least and make sure that there are plenty of air/breathable holes in it, as they sweat the head and start to irritate the child and they reject the helmet.
myra
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Tinkerbell
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Thanks for the advise Myra.
The last thing we want is to have sweaty heads. He's pretty good at keeping his sun glasses on (he's photo sensetive) so hopefully he will adjust to a hat just as quick
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myra
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i put the wrong condition above it should have been dispraxia
sorry myra
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