View Full Version : Hello new person here
10th October 2005, 10:37 PM
:-) Hello I'm Gadget 30 .We are in South Staffs.I'm Mum to Samina aged 2 who was diagnosed as having idiomatic infantile scoliosis earlier this year. We don't know much about it as the consultant we saw at New Cross hospital (wolverhampton) couldn't tell us much and referred us to The Royal Orthapeadic in Birmingham. We have that appointment next Monday.
All i can say is that she curves to the left and is affecting her balance and is giving her trouble walking any distances,and her pelvis isn't on straight. The x-rays show that there is nothing wrong with her bones they just aren't straight iykwim.
I'm really not sure what to expect from this appointment so would appreciate other peoples experiences with their first or second appointments.
I'm married to Ade and we have another daughter Rowan aged 8 (in 2 weeks).
Thank you very much in advance.
10th October 2005, 10:45 PM
welcome to SSO.
I guess first thing they'll do is take new x rays,most likely run an MRI scan and the usual treatment for infantile scoliosis is plaster casting.You can find out more about this by looking down this forum and reading threads from newgirl,Andrea and Sealy.
Good luck next Monday in Birmingham. I know it's very difficult for a parent to have to go through this, but now once you've made your way here,we'll all be here and right behind you.
10th October 2005, 10:48 PM
Welcome to SSO Gadget!! :welcome:
I am 30 now, and I was diagnosed with infantile idiopathic scoliosis when I was 6 months old. It's a relatively unusual form of scoliosis - most children of this age have some congenital reason for their curves. I know that Andrea will be especially pleased to see you here, as she has a 3 year old daughter with infantile idiopathic scoliosis, and doesn't know any other UK-based mothers in the same position!
I'm glad you've found us :-)
11th October 2005, 04:22 AM
Hi Gadget, welcome to this wonderful family of comrades. I too am new at SSo and have found it to be a place of open arms and acceptance. I think you will find you are in a good place here.
11th October 2005, 09:14 PM
Hi Gadget!! And welcome to SSO! While I'm not pleased that you had reason to seek us out, I'm really glad you found us. I'm sorry to hear about Samina - it really is not the easiest news to hear, and because it's not common, it's difficult to find others in the same boat as you to talk to to share experiences and emotions. This place is great for that.
Erin was diagnosed 18 months ago at about 19/20 months of age. She turned 3 at the end of August. For us, the speed of diagnosis and then treatment was extremely fast, and didn't leave us much time to think. As Sins said, one of the first things they will do is organise an MRI, to make sure that everything else is ok. It's standard procedure so don't worry. If everything is ok, it's likely that she'll be scheduled to be placed in a plaster jacket under a GA. Erin had her MRI and was placed in a jacket at the same time.
Plaster jackets take some time to get used to, but they're not as scary as they first seem, and they soon become a way of life. You just learn to do things differently. It's amazing how resilient children are - you'll probably find your emotions going all over the place and she carries on as normal. The jackets are usually (in this country) changed every 3/4 months. How long she will need them for will depend on her curve and its flexibility and size. Unfortunately there are no guarantees with scoliosis or its treatment. As I keep being told - "it's not an exact science".
If you have lots of questions, or want a chat, feel free to PM me and i'll send over my phone number. I know how keen I was to talk to other parents in the initial stages of diagnosis and couldn't find any anywhere!
Do you know yet the size of her curve? If it's affecting her balance then it's likely she has just the one curve rather than an S shaped one, which tends to balance out more. Have a look in the member galleries, where there are pictures of Erin's xrays and also her in a plaster jacket.
Oh, and we're based in London and are being treated at the RNOH in Stanmore.
Hope this has helped some. As I said, I'm often around if you want to talk more.
11th October 2005, 10:04 PM
Hello Gadget just waned todrop by and say hi and welcome to the site. You should find lots of infohere or someone topoint you in the right direction
12th October 2005, 10:37 AM
Hi and welcome, I live in Lichfield, have a daughter (11 years old) with adolescent idiopatic scoliosis being treated at the ROH. Hope your appointment will go well.
You find this site very helpful as it it full of nice and clever people.
Let us know how you got on!
Do try to get advice in advance on what to look and ask for, so you are prepared for your appointment, they can go very quick at times and it could be a while till you see a consultant again.
gerbo :spin: :spin:
12th October 2005, 06:46 PM
Thank you for all of your lovely hello's you have certainly made me feel very welcome. Andrea it's good to meet someone in a similar position to myself I just wish that Sami's treatment was progressing quickly. It's been almost a year now and we have only had 1 appointment. I can't wait till Monday. I have no idea about any of it to be honest they kind of told me that she had it then said we don't know enough about it so we will refer you. Thats it nothing else and of course i didn't know any questions to ask back then. After reading some of the threads on here i now know the kind of things to ask if they don't tell me.
Gerbo, Hi nice to meet someone local. What is the ROH like? Are they good with kids and things? Strange question but what are the waiting rooms like? She is a very energetic Toddler and if there aren't things for her to do or if it isn't enclosed (closed doors at all exits) I'll need to take things to do and keep her strapped into her pushchair.
Thanks again folks
12th October 2005, 07:59 PM
:welcome2: I am Nicki, mum to Lucy who is 9 years old. Lucy has idiopathic scoliosis and was diagnosed when she was 6 years old. She too had xrays and MRI scan before the diagnosis was given. Lucy now wears a boston brace to hopefully hold the curve at 45 degrees.
I am really glad you have found us, everyone here is very warm and friendly. I have been given so much support and advice since joining it has been invaluable.
Hope you get some answers when you go for your next visit
12th October 2005, 08:30 PM
Hi Gadget and welcome to SSO
My daughter Niamh was diagnosed about 9 months old with idiopathic scolisis. Her curve was measured at the time at about 37*. She was monitored for a further 9 months with no chage in her curve but her ribs started to grow out so it was decided to commence treatment. She was initially in a plaster cast and then in a brace (long story) and is now back in a plaster cast for the last 2 weeks. Her x-ray taken in theatre after the plaster cast was applied showed her curve had reduced to 14*, so we are hopeful that this will prove a successful treatment in our case.
We are based in Ireland but the treatments seem to be very similar to the UK.
Hope you enjoy it here, I know I have found this site to be a mine of information and everyone is so supportive.
13th October 2005, 04:41 PM
Originally posted by Gadget@Oct 12 2005, 05:46 PM
What is the ROH like? Are they good with kids and things? Strange question but what are the waiting rooms like? She is a very energetic Toddler and if there aren't things for her to do or if it isn't enclosed (closed doors at all exits) I'll need to take things to do and keep her strapped into her pushchair.
1) Parking can be an absolute nightmare, make sure you are well in time, go round the whole site and ignore any yellow lines (at your own risk ofcourse)
2) Clinic and waitingrom are on one of the wards, bit small, TV in the corner and some colouringbooks, cannot remember much else, but wasn't focussing on other childrens' toys (so take stuff)
3) most consultants/ nurses and staff are very childfriendly
4) Make sure you have your questions clear before you go in, write them down, at times they can appear to rush a bit and you could find yourself out without having asked all you want to know
wish you lots of strength
13th October 2005, 05:13 PM
Hi Gadget :welcome:
I'm thinking Gidget :-D I'm feeling a little crazy today... :hunny: I'm surprised they didn't tell you the degree curvature - I'm sure we'll hear more as time goes by.
13th October 2005, 05:25 PM
Originally posted by Sealy@Oct 13 2005, 04:13 PM
I'm feeling a little crazy today... :hunny:
don't be fooled, she is one of the sensible ones on this site, listen to her every word on infantile scoliosis.
13th October 2005, 05:28 PM
Thanks for the info Gerbo, I'll write my q's down and take plenty of stuff for her to play with just incase. I'll warn my friend who is taking us about the parking.
13th October 2005, 08:12 PM
Hello and :welcome2: Hope you like it here. We'rre a friendly bunch!
15th October 2005, 07:02 PM
Originally posted by gerbo+Oct 13 2005, 10:25 AM--></div><table border='0' align='center' width='95%' cellpadding='3' cellspacing='1'><tr><td>QUOTE (gerbo @ Oct 13 2005, 10:25 AM)</td></tr><tr><td id='QUOTE'> <!--QuoteBegin-Sealy@Oct 13 2005, 04:13 PM
I'm feeling a little crazy today... :hunny:
don't be fooled, she is one of the sensible ones on this site, listen to her every word on infantile scoliosis. [/b][/quote]
Me ?.... sensible ? HA!!!!! :hammer: :rofl:
16th October 2005, 11:20 PM
Good luck tomorrow Gadget !
Hope all goes well for you and they come up with some decent treatment plan for Sam.
17th October 2005, 09:35 AM
Originally posted by Sealy@Oct 15 2005, 06:02 PM
Me ?.... sensible ? HA!!!!! :hammer: :rofl:
you are getting me a bit worried now (if i wouldn't know better.....)
17th October 2005, 08:28 PM
How was your long-awaited appointment Gadget. I was thinking of you today. Please let us know how it went
18th October 2005, 11:26 PM
I really thought I posted here! I've spoken to you already but
welcome to SSO Gadget :wave:
I'm 17 and had surgery at RNOH Stanmore last July and this March.
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