My 5 year old Daughter - idiopathic Scoliosis advice.

Posted , 11 users are following.

Hi, my Daughter has recently been diagnosed with ?idiopathic Scoliosis.

She had an x ray 6 months ago lying down and measured 17° and had a standing x ray 3 weeks ago measuring 27°. She has to have an MRI to rule out intraspinal pathology. I have no idea what this means, can anyone else explain it to me? She will then have another x ray and consult and then we discuss treatment. I am unaware of how serious or minor this problem is but I know I am anxious.

Thank you all. X

0 likes, 18 replies

18 Replies

  • Posted

    Hi KEC82, firstly darl, please don't panic, the upside of this is that your daughter is very young, and also the curve, although there, is relatively small, also because your daughter is so young when the scoliosis was detected, her bones will be more flexible. She may be asked to wear a back brace, further down the line, surgery may be offered. In my own opinion, the younger one is when having sugery, the better, of course, others may disagree. Your daughter's curve may be monitored for a while. What you can do to help her is to ensure that she wears a backpack properly ie, not as is the fasion for it to be over one shoulder. Hope this is helpful.
    • Posted

      Hi janet68145

      Thank you for your reply. It's very reassuring to read. It's all very new to me and because I don't understand it that's why I worry. The consultant didn't explain anything to us really he just wants an MRI done to rule out other reasons this may have occurred ....also why I worry.

      Thanks again. X

  • Posted

    Hi Janet,

    Idiopathic scoliosis happens in young children.Research has been done, but idiopathic means they can't come up with a reason why.Most say, it's possibly a posture problem with juveniles.

    Common, is a bend to the right with children. If they bend to the left, better chance of recovery.

    Now, the age your child is at, requires some realistic expectations, because it will probably get worse.The body is going to accelerate the problem because it's growing so fast.

    I was diagnosed with a 56 degree s curve when I was 11.There was no choice but surgery. I was so young, I sailed through it.Had no fear, and no physical rehabilitation. Intensive care for 2 weeks after, and I had a roomate who I'll never forget.I had tape on my back, and she had staples, and her parents would try to force her to eat oatmeal.I saw a guy walk down the hall, and was trying to get his attention, and my roomie was like, hey, your butt's showing!

    I tell you these things because you have a hard road ahead of you.You need to just go with the flow, and tell your child it's going to be O.K.

    Scoliosis is a better diagnosis than leukemia, Cancer. Heart Failure,losing legs, or arms.

    This child may suffer, but that suffering will make them a stronger person in the long run. Sounds like they have the greatest blessing already, a parent who loves them enough to be on this forum.

    You stay strong, Momma.That's all you can do.


    • Posted

      Thank you so much Betty. Again. .reassuring words and wise words too. X 😊
    • Posted daughters thoracic curve bends to the right and lumbar slightly to the left.
  • Posted

    Hi KEC82,

    I addressed you as Janet, I'm sorry! Sometimes my age catches up with me on these sites.Janet's awesome!

    You're very welcome, and I hope to hear from you on the development, and if I can give any words of encouragement,I'll be here.

    I prefer to think that every problem we have, has been given to us because God knows we can handle it, and make it a graceful struggle.Not that any day is easy, but as you can see in this forum, it's a pretty rare club.We meet 7 days a week!

    Your child is so lucky to have you,and just know you're not alone in this.

    • Posted

      I agree wholeheartedly with you, and yes, Janet's are awesome. I send you many blessings of the season.
  • Posted

    Hi KEC82, I thought, whilst the other answers are already incredible, an opinion from a slightly younger person with scoliosis may help slightly considering the age of your daughter.

    I am 16 years old and have had scoliosis for about as long as I can remember! I was actually diagnosed quite late and so was not elligable for a brace, but by the sound of it they well be very keen for your daughter to try one. The 10' difference in the x-rays shouldn't worry you, it doesn't mean that the curve has progressed rapidly in that time, just that it was a different view and opinion.

    Firstly, I would advise ignoring a lot of generalised scoliosis websites. Whilst they can be very helpful in getting the idea, many of them are out of date and can be terrifying, so ask your doctor or this forum! This forum will give different answers (for example I would disagree with Janet that it might be a postural cause as there have been many papers disproving this theory) but will definitely help!

    Scoliosis doesn't have to be something scary - it helps to know you are not alone, nor will you ever be, and you always have support from this little community should you or your daughter ever need it!

    I am very happy to answer any questions regarding scolio in general, my scolio specificially or anything like that - even if you (or your daughter/family) just need a chat and some support - feel free to privately message me or reply here (your choice!)

    All my love, Izzie x

    • Posted

      My grandson, now 15 months, was diagnosed with kyphosis, torticollis, then six months later, scoliosis. The x-rays were scary, went back one month later and it appeared to improve. He could never crawl or pick his head up while lying on his stomach, which he cries when he is on his stomach. He went straight to walking and at 12 months he was walking on his own. We can see the curve and his ribs poke out like elbows. My question is he in pain. He is not a crier. He's a very happy baby, but I just wonder if the scoliosis is painful. We finally had to address the things with his "too young to be a pediatrician", who missed everything. We were sent to a orthopaedic surgeon initially which turned out to be the kyphosis and tortorcollis. Scoliosis was not seen in the x-rays or the MRI. Six months later with physical therapy, his x-rays showed a really terrible curve in his spine. That was December 30th. He sent us to Genetics and Endocronologist. Now we have to see a neurologist and a nutritionist. I am so confused. I saw the website, Scoli Smart, but the child has to be at least 7 years old to wear the activity suit. I am so afraid of the surgery should it ever come to that.


  • Posted

    HI, Idiopathic scoliosis is as most of us know is unknown course. However there is a strong corolation in it and genes. Picking it at the age of 5 is a good thing. Your daughter wil be monitored well and should it lead to surgery she will have a good result. Generally in the UK 40-50 degree curve they will offer the operation. The older you have the operation the results are not so good as the spine stiffens over time. There is also a new type of surgery where they operate and the rods can be extended as they child grows, through an electronic box that is placed on the back as and when the rods need to be altered,  worth reading up on. A curve does not alter depending on the angle of the xray. So if it was 17 and now 27 degrees it clearly indicating it is progressing  and a double cuve again is normal for this type of scoliosis. The operation is no mean feat but the younger it is done the better should you be  faced with this decision.  This forum is good as it is people who  have experienced the operation first hand and although people have had different experiences it helps to have the support. Google intraspinal pathology as its looking at possibilites that is best if you read about it. Idiopathic Scoliosis affects about 3% of the population and is more prevalent in girls. Do not worry as there is amazing surgeons around who can correct her should you need to go down that route. You will be guided and ultimately make the right decision for her. Best Wishes. 
    • Posted

      Thank you also Jay! I teams so much to have support from strangers who can relate. Xx
  • Posted

    Hi, my 5 year old daughter has also just been diagnosed with a 17 degree left curve. She had an xray standing up and the doctor told us its not unusual for there to be a more acute angle showing than is really there when they stand up as a child this young doesnt always stand perfectly straight when asked. The spine specialist at the Royal Orthopaedic Hospital told us to start her on ballet and this should help reduce the curve, along with physiotherapy (we are still waiting for an appointment) and daily exercises - we are due to go back in 6 months time to see if it has improved or gotten worse. I'm looking into different clinics to see what options there are but for a child this young the options seem limited. I hope your daughter sees an improvement at her next appointment. I will update if i come across anything more helpful! 
    • Posted

      Hi Tara! Hope you don't mind me asking, but I'm due to go for fusion surgery at the Royal National Orthopaedic Hospital in Stanmore - I live in Northern Ireland so I'm pretty unaware of what it's like, would you recommend this hospital?

      Also, hello KEC82! Just want to let you know I'm here for you, too. If anything it's good that they've caught your daughters scoliosis this early because they can begin using methods to prevent the curve from progressing such as bracing or physiotherapy exercises. I recently just found this forum and I find it a massive help. Honestly, any questions you have will be answered by these wonderful guys, they're amazing. God bless.

      Kelly x

    • Posted

      Hi Kelly, no probs! I think it is the best hospital in the country for this type of surgery so you've been sent to the right place! Good luck, am sure it will go exactly as planned as you have the best surgeons in the country working there.
    • Posted

      Thank you Tara, much appreciated 😊

      Kelly x

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