3 year old son- Is this too young for 2week course at GOS??

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3 year old son- Is this too young for 2week course at GOS??

Postby Jobaz » Mon Feb 09, 2009 8:57 pm

Hi

I have a 3 year old son who has been seeing Sue under our private insurance ,,however he is just soooooo tired all the time & so very grump & seems to be in alot of pain (although he wont admit it most of the time, but after pain medication hes a complete angel??) (has anyone else got kids like this who completly change their personality after pain meds?)
She has suggested we now transfer over to NHS as he needs alot more help & there is alot more can be done for him on NHS..... we have sent over the referal & are now waiting to hear back..
what exactly do you think she means?? I was wondering if she were refering to this 2 week stay?? but surely at age 3 he would be too young for this??
any advice please? Are there any of you with 3 year olds that can tell me what treatment to expect next from GOS?
.

regards

appologies if this is on another thread- been looking for the past hour & couldnt find anything
Jobaz
 

Re: 3 year old son- Is this too young for 2week course at GOS??

Postby MandyG » Mon Feb 09, 2009 9:22 pm

hiya

my daughter did the 2 week course in november - she was 3 years and 3 months old.

she doesn't take any pain meds cause it constipates her plus she refuses to take anything.

I have noticed a difference in her stamina since the course - she can now walk round a supermarket. She isn't cured, obviously, but it did help. We have to repeat the course, maybe yearly.

there is only so much they can do with 3 yr olds but my daughter seemed to enjoy it.

when we were there there was a dutch couple who had paid for theuir 6 yr old twins to do the course. so surely your healthcare would cover it

not sure what else sue would mean when saying you would get more from nhs

hope I helped slightly lol

xxx
Mandy - DX EDS III by prof G June 2009
mum to Rachel 9-DX EDS III by prof G June 2009
Rebecca, 6, DX EDS III nov 2008, GDD, selective mutism, PDA
Charlotte 3- EDS III DX 2010
Louie 2- showing signs
Also carer to my husband who has narcolepsy + cataplexy
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Re: 3 year old son- Is this too young for 2week course at GOS??

Postby Jobaz » Tue Feb 10, 2009 9:52 am

thank you so much for your reply... so can you tell me what sort of thing your 3 year old did there?? were you there for the full 2 week course?
did you stay with her in the actual physio sessions?? I have read from others that you are not allowed to stay with the children during the sessions.. im not sure my son wouuld cope with that, especially if hes like he is at the moment (not sleeping well, very tired & whingy, due to the pain & fatigue)??
Jobaz
 

Re: 3 year old son- Is this too young for 2week course at GOS??

Postby MandyG » Tue Feb 10, 2009 11:37 am

hiya

unfortunately parents are not allowed into the physio sessions - so I have no idea what went on lol

my dd doesn't speak much. You get a review with the physios after the course and they tell you what they did

I was worried my dd wouldn't cope cause she has issues - but they sdaid she did fine. cause she was the youngest I noticed the older kids took to her and they were always cuddling her etc

yes we were there the full 2 weeks. It's usually 9.30 - 11 in morning and 1.30 - 2.30 in afternoon. they made me collect her at 10.30 as 11am was too much for her.

she still coped well and there was a slight improvement

I am sure your son would cope fine. Trust me - the professionals at gosh are all lovely. My dd doesn't like people touching her etc but they seem to just be so child friendly - she loved it

xxx
Mandy - DX EDS III by prof G June 2009
mum to Rachel 9-DX EDS III by prof G June 2009
Rebecca, 6, DX EDS III nov 2008, GDD, selective mutism, PDA
Charlotte 3- EDS III DX 2010
Louie 2- showing signs
Also carer to my husband who has narcolepsy + cataplexy
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Re: 3 year old son- Is this too young for 2week course at GOS??

Postby alison1984 » Tue Feb 10, 2009 2:52 pm

my daughter has been under GOSH since she was 2, she was 4 in october and is going on the physio course in march this year for the full 2 weeks.
previousley, we have had physio exercises to do at home, some hydro and nothing else.
maybe sue was refering to your son seeing other medical specialist such as, podietrist (sp?), nurologist, have x rays done, and it would be easier to do this through nhs rater than your private insurance, i know that all of these specialists have been talked about with my daughter.
also maybe sue is looking to refer you to your local physio and feels that this would be easier done via NHS.
just some thoughts.
alison1984
 

Re: 3 year old son- Is this too young for 2week course at GOS??

Postby rebeccagraceson » Tue Feb 10, 2009 7:19 pm

My 3 yo is having physio at GOSH, but just day visits. We have is next one next Weds and no suggestions of any residentials (thank god - he would not be able to cope with it).

I am interested to hear what your LO's symptoms are for the families who have had GOSH residentials. Would like to know if this might be suggested at some point in the future for my LO.

He is 3 and has around 1 dislocation a week, just started dislocating shoulder and knee, but apart from that it's elbow/wrist/hip/fingers etc. When ill he has a 2-3 month period of 3-4 times a day dislocations. He has to wear high ankle boots which has helped his evening and night pain tremendously. So now he only gets occasional night cramps (1-2 a month). Is he too mild to need to do this residential course?

Becky
rebeccagraceson
 

Re: 3 year old son- Is this too young for 2week course at GOS??

Postby Jobaz » Tue Feb 10, 2009 8:30 pm

Hi

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??????) :?: :cry:
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 :D ... 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? :S 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
xx
Jobaz
 

Re: 3 year old son- Is this too young for 2week course at GOS??

Postby MandyG » Tue Feb 10, 2009 9:01 pm

hiya

I apologise for not reading through word by word (I get migraines if I concentrate on things too much)

my dd sounds like your son - she gets very grumpy too and we were concerned she couldn't speak but we now know it is all to do with the pain she is in
psychologist said its her body trying to cope with the pain so anything else is just too much work - for example she will hit out instead of speak lol (we know she can talk cause when she feels ok her speech is perfect)

my dd fidgets a lot too

nighttime - since she was a baby I have been up with her screaming through the night - its not night terrors - its the pain in her legs etc.

she has bad mobility and core stability and is very bendy. walks very slowly, chronic constipation

we also thought she may be on the autistic spectrum but now am not too sure cause it seems to be just the way she deals with her pain. she totally shuts down and will lay on couch for days.

I am sure sue will know what she is talking about and to me your son does sound like he has HMS.

it affects us all differently. I know on the course the physios kept telling me becca is soooo bendy - and for them to say that I assume my dd is badly affected - she cant even go up or down stairs on her own yet - stuff like that

the course is good and I thoroughly recommend it if you get the chance.

sorry cant write more - my hands siese up too - I swear I feel like an old lady lol

I will try and answer any questions as best I can

ps I am about to take my eldest to gp tomorrow to get a referral for her to go to gosh - she is very bendy too and gets very tired and cant walk far and is in pain with her legs and hands

no where near as badly affected as my 3 yr old but I dont want her going unchecked either.

my 1 yr old is very bendy too (again not as badly affected as my 3 yr old) and I am watching her closely but she doesn't seem to be in pain
Mandy - DX EDS III by prof G June 2009
mum to Rachel 9-DX EDS III by prof G June 2009
Rebecca, 6, DX EDS III nov 2008, GDD, selective mutism, PDA
Charlotte 3- EDS III DX 2010
Louie 2- showing signs
Also carer to my husband who has narcolepsy + cataplexy
User avatar
MandyG
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Joined: Mon Sep 10, 2007 5:32 pm
Location: fife

Re: 3 year old son- Is this too young for 2week course at GOS??

Postby muppet » Tue Feb 10, 2009 9:54 pm

Hi, my son is older than yours but has had problems with sleep early waking and still being tired when he got up even though he had just slept for 13hrs. Recently we were asked to watch for sleep apnea. i believe this can be different in each individual but basically although your child appears to be sleeping they in fact are having very disturbed sleep, never getting into a really deep sleep which means they are still tired when they wake up. one of the main things we were told to watch was his breathing (we had to sit and watch him sleeping for long periods of time) to see if he actually stopped breathing for any periods of time and then took deep breaths to cope with the not breathing. It is probably worth googling this as there are much better explanations.
Its just a thought
Helen
muppet
 


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