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michaelsmum
25th July 2007, 04:41 PM
Hi im new here my story is a long one but i will keep it is as short as I can. Looking for support and advice. I first noticed my sons curve when he was ten months, brought him to my GP who at first could see the curve he arranged for 3 other GPs at my surgery to check him out before telling me that he might have scoliosis. Was referred to the RVH to see an consultant, i rang my surgery every week for 6 weeks because I had not received any word from the hospital for an appointment. :-x Sooooooo i took my son to a private clinic were he was xrayed and the consultant confirmed scoliosis with a curve of 22 degrees. As i did not have health insurance the consultant arranged for me to get a fast appointment at Musgrave Park hospital by contacting a concult he new there.
At my appointment in musgrave michaels curve at progressed to 35 degrees, consultant advised that we should wait 6 months and take another xray and then decide what action to take! Three months passed and michaels back changed dramically to me so I rang for another consultant -received an appointment, which then showed michaels curve was now at 38 degrees. I explained to the consultant about his walking and how he was getting out of breath, he agreed it was time for a brace. A nurse then proceeded to tell me that the guys who fitted the plaster casts for braces were all off on annual leave for the hols and that I would have to wait a further 2 months before he could be cast :-x Anyway I complained and my son was fitted with a brace three weeks later! He is now 21months old!

snowy24040
25th July 2007, 05:03 PM
HI :welcome:

IVE NOT BEEN A MEMBER VERY LONG MY SELF BUT YOUR AT THE RIGHT PLACE FOR HELP AND INFORMATION.MY DAUGHTER COURTNEY FINALLY HAD A TLSO BRACE FITTED YESTURDAY,SHE WAS DIAGNOSED WITH SCOLIOSIS IN 2004 SO ITS BEEN A LONG HARD FIGHT TO GET COURTNEY TREATED.I HAD TO GO TO GP AND HAVE HER CARE REFERED TO ANOTHER CONSULTANT AS HER ORIGINAL ONE WAS A TOTAL PRAT :hammer: OTHERS ON THIS SITE HAVE SO MUCH KNOWLEDGE THAT WHEN YOU GO TO SEE CONSULTANTS ETC YOU NO WHAT TO ASK AND BELIEVE ME IT HELPS.



X X SHARON X X

sins
25th July 2007, 09:22 PM
Hi Michaelsmum,
Welcome to sso.Has your consultant discussed plaster casting with you?
It's my understanding that plaster casting under general anaesthetic, where the spine is stretched straight and held in place with the plaster cast would have been first choice of treatment.
has your little boy had an MRI scan and have you been told anything about the kind of scoliosis he has?
Sorry for all the questions...
Sins

michaelsmum
25th July 2007, 10:27 PM
At my last appointment (june 07) my consultant advised that michael would be put to sleep and plaster cast and that this would involve a three day stay in hospital. He said that this would happen fairly quickly but that he would be off for the next two weeks on annual leave so it would all happen when he returned. He then arranged for a nurse to explain michaels stay and what to expect when we arrived at hospital! This nurse proceeded to tell me that it would not happen until the autumn because the three guys would set the plaster would all be off on annual leave over the summer! My consultant also said that he was referring michael to rvh for MRI.
When I got home and digested all the info I decided that I wasnt happy leaving him the way he was for another say three or four months. So I rang and complainted about the staff being all off at the same time. As a result he had a plaster cast fitting standing straight for which he was brill stayed still and everything 8) a brace was then made from this and I collected it the following week! He now wears this all the time to hold his curve at 38 degrees. My consultant is not aware as yet that he is in the brace, but I have a further appointment for september and am still waiting a date for MRI scan.

Thanks fo showing an interest my friends dont understand the difficulty im having they think now hes in a brace that will do the trick.

He doesnt sleep in his cot and he freaks if he wakes on his own - not sure if hes sore from the brace, back pain or if its bahavoural!! :woe:

Lisa

Abbi
25th July 2007, 10:45 PM
Hi Lisa! :welcome2:

I am Abbi, and also from Northern Ireland. I wasn't diagnosed with scoliosis until I was 17 and had the surgery in RVH under Mr Eames when I was 18. I have been seeing Mr Hamilton at Musgrave for appointments.

Which consultant has Michael been seeing at Musgrave?

It's good to see you have been on top of them with appointments...it is ridiculous to think that your son could have been unbraced for 3 months. Not sure about the sleeping problems, do you think the brace could be itching him at all?

I hope it does the job at stopping any progression! :squeeze:

michaelsmum
25th July 2007, 11:10 PM
His consultant is Mr Eames think its Niall there r two Mr Enames at Musgrave. How did you find your op? R u glad you've had it done?

His cast doesnt annoy him during the day, he doesnt even mind getting it on, but he sweats alot as he wears it over his vest and i have to change his vests alot. But before he had the brace he would only sleep on the sofa with his back in a curve and his legs hanging over the edge! Now the brace keeps his back straight i was hoping to get him back in his cot!! :-x I would like a nites sleep soon - dont want to give him iburfen if he doesnt need it!

snowy24040
25th July 2007, 11:37 PM
HI

I BOUGHT A MEMORY FOAM MATTRESS WHICH ARE EXCELENT I DONT NO IF THEY DO A COT SIZED ONE,BUT THIS MAY HELP


X X SHARON X X

newgirl
25th July 2007, 11:47 PM
Hi Michaelsmum
Welcome to SSO.
I am in Dublin and my 3yo daughter also has a curve of approx 38Deg which was diagnosed at 9 months. We were watched for a further 9 months and her curve did not progress but her ribs were giving cause for concern so it was decided at 18 months to cast her.

We have had a few ups and downs with her casting due to changes of consultants but we are back on track now.

I am surprised that they are saying the a 3 day stay is necessary for applying a plaster cast, we have been in 2 different hospitals and it has only been a few hours and Andrea's little one is also done in the UK as a daycase.
Glad Michael is coping with the brace, the plaster cast is very similar and if he does not mind the brace he will cope fine with a cast.

Any questions give a shout
Nicola

michaelsmum
26th July 2007, 01:04 AM
Hi Nicola
It was explained to me that he would be stretched under GA and fitted with a cast on a razor table!!! and then on the third day they would see how he adjusted to the cast and we would go home! Although come september this may change! Did ur daughter have GA? Can the plaster cast be removed for bathing? Michaels brace has 2 velcor straps at the front to remove it. It only took one guy ten minutes max to plaster cast him for his brace in June and then we returned the following week and collected it - it needed some adjustments but they were made on the day of collection - just some trims to make sure it didnt dig in to him.
Thanxs for ur reply
Lisa

Abbi
26th July 2007, 01:16 AM
Originally posted by michaelsmum@Jul 25 2007, 09:10 PM
His consultant is Mr Eames think its Niall there r two Mr Enames at Musgrave. How did you find your op? R u glad you've had it done?

Niall Eames is right - he is the scoliosis consultant. I think the other is just a general ortho consultant.

Who is it that does the actual bracing at Musgrave? I haven't heard of many been braced before. A friend of my mum's child had scolisis and she was adament a brace was needed (as she also had it as a child) but she was told a brace would do no good...so its great you have pushed the issue and got a brace! :niceone:

The surgery was OK...pretty tough on myself and the family, but I got through it fine. I am glad I had it. My curves, both 80 degrees went to around 35 degrees...I gained 2 inches and I'm much straighter, so dead chuffed! :-) I have my last appointment at the scoliosis clinic in September, where I'll be discharged!

sg-ni
26th July 2007, 03:48 AM
Hello there.

Who is it that does the actual bracing at Musgrave? I haven't heard of many been braced before

They do the bracing in a wee side facility as you head towards the direction of where the wards are in Musgrave, they are only one set of double doors away roughly. If youve likely been at the wee newsagents place in Musgrave, its just down the sloped corridor from there. Last time I was there, a fellow with a beard (his name slips my head at the minute) was the main one who took care of the braces/casts and other patient specific stuff to do with the spine/back. I do remember him saying he was only one of a few people in NI to have the qualifications to do what he does, back then anyway.

Btw slightly off topic but if you are ever down that direction in Musgrave Abbi, they had (atleast the last time I was there) a wall with old scoliosis instrumentation used over the years behind a glass frame as you head towards the side rooms where they do the actual marking and fitting of the braces....some mad contraptions on the wall I must say if you are interested in that sort of stuff!.

As a result he had a plaster cast fitting standing straight for which he was brill stayed still and everything
I used to fight with them and try to run away lol.

He doesnt sleep in his cot and he freaks if he wakes on his own - not sure if hes sore from the brace, back pain or if its bahavoural!!
What position is your son sleeping in if you dont mind me asking?.
I always found it extremely uncomfortable to sleep on my back when I was in the brace, I could barely sleep on my back atall. The best way I could get to sleep was on my stomach or on my side, but Im no genius on kids or that sort of stuff so I dont know if letting a wee one sleep on their stomach in a cot (or anywhere) is a good idea or not!!.
Maybe try some different things when putting him to bed I guess, maybe try raising his legs up a little with a folded towel or something underneath them?. Maybe hes gettin a bit too hot?, I was literally running with sweat in the brace at times when tryin to sleep!. Mabe the brace is digging into him a little?, under the arms or maybe his vest is got a little folded up and is pushing into him around the hips?, it can be right and uncomfortable too, normally just needs a bit of a tug/pull to free it up to get the crinkle out of it. The digging into the arm could normally be sorted by just putting one of them big sticky plaster things over the sections that go under the arm so its a bit softer and doesnt dig into the skin as much. I sometimes ended up red and sore, sometimes blisters there with the pressing in.

The other folks here can likely give a better idea than myself in regards to the sleeping end of things!. Im just floating up some things that come to my head when thinking of trying to get to sleep back when I was braced from incase its any use to you :-)


@Lisa: I started going to Musgrave when I was 2 years old. I was then cast for a few years then braced up 23 hrs a day until I was 18/19. My doctor for the most part then was Dr Halliday (hes retired now) then I was sortof shipped between Dr Hamilton and Eames until they said I didnt have to go back :-) .


I really hated the place at the time with all the appointments an everything, but looking back they done a really good job on me


All the best for you and your son!

andrea
26th July 2007, 04:11 PM
Hi Lisa and welcome to SSo. I'm sorry to hear your son has scoliosis. As the others have said, my dd Erin is in a plaster cast, and has been for the last couple of years. Yes, it has to be done under a GA, yes they stretch them on a strange looking table, and no you can't take it off for bathing, but the results at this age are generally better than braces. We are in and out the same day when we have a cast change, but you may have to stay overnight the first time, just to make sure there are no reactions to the GA. I've not heard of any consultant casting a child without an MRI first to rule out any congenital issues, but this may be regional, I'm not sure.

Welcome again. If you have any questions, just shout.
Andreax

michaelsmum
27th July 2007, 07:03 PM
sg-ni

Thank you for taking the time to reply, its great to here their are others out there who understand what we are going through! As you said the bracing is a small area in Musgrave Park hospital in Withers Building ( which is seperate building from outpaitents were we go to see Mr Eames) The Plaster theatre is called R.E.C they are only 2 or 3 guys in this department that Im aware who can make the casts. Mr David Algreed fitted michaels and he was the loviest patient made ive meet! :-) which helps when its a 20 month old boy whos to be kept still.

What position is your son sleeping in if you dont mind me asking?.
He sleeps on his back now that he is in the brace and he finds it difficult to roll over, before the brace he would have slept on his front on the sofa with his legs hanging over the edge. :roll: But this was the only way he was comfortable sooo everytime me and his dad took turns sleeping on the opposite sofa, watchin in case he fell off. I dont want to lie him face down as I am worried that he wont be able to roll of his front.
He has no red markings from the brace at the moment its an excellent fit - David was very pleased with it. But this might well change as he grows! BUT he sweats alot poor thing his vest be soaking and have to be changed regularly, some times he breaks out in a sand paper like rash from the sweat!! :woe: I will try a towel under his legs see if that makes him more comfortable.

What degree was ur curve?
[COLOR=orange]Did u prefer casting or the brace? how often was ur brace refitted? Was surgery not an option for you?

Thanks again Lisa

michaelsmum
27th July 2007, 07:13 PM
Andrea

Thanks for ur response, when I was told that michael was to be cast and referred for MRI at different hospital I asked the consultant which would happen first he said that he couldnt say because of waiting list etc. He also told me that it didnt matter if the mri came after that michael would still be cast. I was concerned about the timing of 2 GAs in case they came in the same month or too close together sooooo i rang my health visitor and she said that both hospitals would be aware of this and that they would insure that he received the correct GA for a baby of his age!! that it was their worry not mine!!!!!!
Do you think I should get a second opinon????????????

Lisa

sg-ni
27th July 2007, 09:32 PM
What degree was ur curve?
No idea to be honest, I never asked or really wanted to know back when I had my checkups. I just wanted away from the place as soon as possible!. My xray did look more or less like a letter S. Luckily its not noticable or anything apart from my right shoulder being sticking out a little, nobody really has the slightest theres anything wrong with me now that I am out of the brace :-)

Did u prefer casting or the brace? how often was ur brace refitted?

I dont really remember much from being casted so ill have to say brace. It never stopped me from doing sports or anything or being in the local footy team even with it on, never really let it hold me back sports wise.
The brace just got changed when I started to outgrow it...most usually lasted a few years. Quite a few needed some running repairs done on them though because they kept breaking and cracking on me.

Was surgery not an option for you?
They talked of doing the op at different stages, when I was a baby they kept me in at Musgrave quite a bit then because they were worried about my organs an they talked of maybe doing the growth rod(??) surgery then, but then that all sortof passed off ok then the plan was to just try and control the curve as much as possible with casting/bracing. They talked of doing it again different times after then but when I was 13/14 talk of it got a bit serious because I was in my growth spurt and there was quite a bit of deterioration but after MRI an other docs opinions at Musgrave they decided to continue the 'try and hold the curve' tactic that my first doc decided to go with back when I was young. My mum thought when I changed doctors at Musgrave that they were a bit keen to get me openened up lol. Ah well.

Ps. Just another thought - A new brace is right and uncomfortable for the first while because your body sortof has to get used to moulding into its shape, this is another thing that could be affecting your son when sleeping. Its hard to know for sure what it is could be affecting his sleep because he would be at that age!.

michaelsmum
28th July 2007, 11:44 PM
sg-ni

Thanks for all the info and support my partner thinks im causing myself more stress and worry asking all these questions! But i think the more i know the more prepared i will be. I think its brill that you got though ur skool years without any hassle from the other kids. I hope the same happens for Michael and that his scoliosis doesnt hold him back - hes my only son and i want him to be able to do all the boy things like play football and climb trees (as long as he doesnt fall out ;-) ).

Much appreciated :niceone:
Lisa

DylansTrust
29th July 2007, 09:39 AM
Hi Lisa, sorry to hear about Michael.
You have come to the right place, its a great community with lots of support.

Our son has Ullrich Congenital Muscular Dystrophy and @ his last xray 6 months ago, he had a 53 deg curve. He is due for another appt in Aug to review the curve. So we are a bit apprehensive, there was talk about fitting "growth bars" but we will have to see.

All the best for the Fututre
Warren :niceone:

Little Ali
29th July 2007, 04:57 PM
Hi Lisa,

Just wanted to wish you all the best and say :welcome2:

michaelsmum
29th July 2007, 10:54 PM
Warren

Hope all goes well with ur sons appointment in August, he looks like a wee darling!

Lisax

michaelsmum
29th July 2007, 10:56 PM
Little Ali

Thank you for ur lovely welcome, how u are keeping well.

Lisax