I've been asked how to contact the C.A.S.T group. They used to have a Yahoo group, but have now switched mainly to Facebook.
If you go to the infantile scoliosis website http://www.infantilescoliosis.org/ there is a facebook link on their homepage to "join" them.
Best wishes to you and your family
Wednesday, 1 October 2014
Tuesday, 20 May 2014
"we're not out of the woods yet"
Those were the doctor's words. "We're not out of the woods yet".
This is a critical period for lung development and the brace is controlling J's spine while he grows so the doctor said he must stay in brace. It is normally recommended that they stay in for 18 to 24 months. We've only had just over a year.
When I said what his colleague had said last time-that J wouldn't have to wear the brace after the next appointment- he dismissed it, saying that that person was just a fellow ie a trainee. That feels awful- like I was stupid to believe him. He didn't say that but even so. It doesn't feel right that we should be led to believe/hope something which if he (our "proper" doctor) had seen us would never have even been mentioned.
J said he hates the brace to the doctor in no uncertain terms today! At least he is verbalising and expressing what he feels. Silly brace!
I said how he complains that it feels tight and the doctor said he'll get us an appointment with the orthotics department and J can have a new one.
J and I sat in the cafe afterwards and I asked him for a hug because I was feeling sad. He said he felt sad too.
I was so hoping he could start school in September without it. It makes being independent hard for J. Getting dressed without it is bad enough but he simply can't bend to put on socks or shoes when he's wearing it and it makes other items harder too. And going to the toilet alone is not possible either.
J didn't cry or react too badly (I did have tears in my eyes as we left the hospital- I'd had so many hopes that we could close this chapter).
In the car I said a few sentences so J could hear using what I've learnt in tapping but without actually tapping as I was driving eg Even though I hate my brace, I accept it is helping my back. Even though my brace means I can't bend, the curves are being controlled so I don't have to wear a cast again.
We need to work on positive feelings towards it so J can accept it for another 6 to 12 months.
And actually it's ok. A new brace won't stink for a while. It'll fit better so J will be more comfortable. He can choose a different design (the vehicles have elicited a great response from others though so we need something equally cool to start school). And the independence thing will come.
I am learning how to manage my feelings as other parents boast about their children's independence- and we will get there eventually.
And at least J is enjoying dance and sporty things now he's a bit more flexible. We'll keep working at that.
Thank you for all the good wishes. Next time we'll go without building up our hopes too much. At least - and really this is almost the most important thing- the curves have stayed stable while in brace. The doctor said they are always unpredictable and there's no knowing when they might get worse, so we need to protect J's lungs while he grows.
And staying the same (visible curve on the xrsy but not anywhere near as bad as when we started) is a victory of sorts.
I am tired and waffly. Time for bed. Especially as M's molars are emerging (several at once poor sausage) and he screamed for 3 hours last night despite milk and calpol!
This is a critical period for lung development and the brace is controlling J's spine while he grows so the doctor said he must stay in brace. It is normally recommended that they stay in for 18 to 24 months. We've only had just over a year.
When I said what his colleague had said last time-that J wouldn't have to wear the brace after the next appointment- he dismissed it, saying that that person was just a fellow ie a trainee. That feels awful- like I was stupid to believe him. He didn't say that but even so. It doesn't feel right that we should be led to believe/hope something which if he (our "proper" doctor) had seen us would never have even been mentioned.
J said he hates the brace to the doctor in no uncertain terms today! At least he is verbalising and expressing what he feels. Silly brace!
I said how he complains that it feels tight and the doctor said he'll get us an appointment with the orthotics department and J can have a new one.
J and I sat in the cafe afterwards and I asked him for a hug because I was feeling sad. He said he felt sad too.
I was so hoping he could start school in September without it. It makes being independent hard for J. Getting dressed without it is bad enough but he simply can't bend to put on socks or shoes when he's wearing it and it makes other items harder too. And going to the toilet alone is not possible either.
J didn't cry or react too badly (I did have tears in my eyes as we left the hospital- I'd had so many hopes that we could close this chapter).
In the car I said a few sentences so J could hear using what I've learnt in tapping but without actually tapping as I was driving eg Even though I hate my brace, I accept it is helping my back. Even though my brace means I can't bend, the curves are being controlled so I don't have to wear a cast again.
We need to work on positive feelings towards it so J can accept it for another 6 to 12 months.
And actually it's ok. A new brace won't stink for a while. It'll fit better so J will be more comfortable. He can choose a different design (the vehicles have elicited a great response from others though so we need something equally cool to start school). And the independence thing will come.
I am learning how to manage my feelings as other parents boast about their children's independence- and we will get there eventually.
And at least J is enjoying dance and sporty things now he's a bit more flexible. We'll keep working at that.
Thank you for all the good wishes. Next time we'll go without building up our hopes too much. At least - and really this is almost the most important thing- the curves have stayed stable while in brace. The doctor said they are always unpredictable and there's no knowing when they might get worse, so we need to protect J's lungs while he grows.
And staying the same (visible curve on the xrsy but not anywhere near as bad as when we started) is a victory of sorts.
I am tired and waffly. Time for bed. Especially as M's molars are emerging (several at once poor sausage) and he screamed for 3 hours last night despite milk and calpol!
Monday, 19 May 2014
hello again!
Such a lot has happened since the last post- new camera (hard to download photos!), new job, new baby (J has a baby brother!), moving house...
But I was determined to write before tomorrow's appointment.
We are hoping tomorrow will be the end of treatment. Just x-rays and monitoring from now on... we hope!!
J has become very aware of his brace over the last 6 or so months and is good at expressing his feelings ( he HATES it! He hates not being able to bend. He says he hated not having proper baths when he was in cast- yet up until recently he seemed v accepting of it all).
I hate the smell of the brace- the leather straps reek of urine and no matter how much febreze I use I can't disguise it. J's nappy often leaks at night and his vest and brace are soaked. We tried pullups and 2 nappies, but to no avail.
What gives me hope about tomorrow is that there seemed to be improvement in the curves at the last appt. We didn't even get seen by the consultant, though I managed a quick chat with him in the corridor- he was delighted with progress. And we were told the next appt might be when we finish bracing.
I ought to write several blogs to cover everything I want to say.I hope to blog more soon and really must post photos :-)
One thing I wanted to mention was that J started physio October 2013.She said he was v v v stiff and did lots of work on that. She explained his hamstrings were so tight, it would hurt to stand on one leg and kick a ball. So that would explain his behaviour at football (used to use the skittles and hit the ball not kick).He is so flexible now that he did a forward roll at dance last week!!!!!
Why did no-one suggest physio from the word go? It was his preschool who suggested it after 2.5 years if treatment... My recommendation to any parent of a child with infantile scoliosis in cast is to get physio! I have seen queries raised by parents about wondering whether physio would help the curves. My view is different- it actually should be seen as a way to improve / maintain flexibility in the rest of the body.
Big day tomorrow, so must get to bed.
I promise I'll let you know the outcome tomorrow!
Keep all your fingers crossed!!
But I was determined to write before tomorrow's appointment.
We are hoping tomorrow will be the end of treatment. Just x-rays and monitoring from now on... we hope!!
J has become very aware of his brace over the last 6 or so months and is good at expressing his feelings ( he HATES it! He hates not being able to bend. He says he hated not having proper baths when he was in cast- yet up until recently he seemed v accepting of it all).
I hate the smell of the brace- the leather straps reek of urine and no matter how much febreze I use I can't disguise it. J's nappy often leaks at night and his vest and brace are soaked. We tried pullups and 2 nappies, but to no avail.
What gives me hope about tomorrow is that there seemed to be improvement in the curves at the last appt. We didn't even get seen by the consultant, though I managed a quick chat with him in the corridor- he was delighted with progress. And we were told the next appt might be when we finish bracing.
I ought to write several blogs to cover everything I want to say.I hope to blog more soon and really must post photos :-)
One thing I wanted to mention was that J started physio October 2013.She said he was v v v stiff and did lots of work on that. She explained his hamstrings were so tight, it would hurt to stand on one leg and kick a ball. So that would explain his behaviour at football (used to use the skittles and hit the ball not kick).He is so flexible now that he did a forward roll at dance last week!!!!!
Why did no-one suggest physio from the word go? It was his preschool who suggested it after 2.5 years if treatment... My recommendation to any parent of a child with infantile scoliosis in cast is to get physio! I have seen queries raised by parents about wondering whether physio would help the curves. My view is different- it actually should be seen as a way to improve / maintain flexibility in the rest of the body.
Big day tomorrow, so must get to bed.
I promise I'll let you know the outcome tomorrow!
Keep all your fingers crossed!!
Subscribe to:
Posts (Atom)