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franie
30th April 2005, 11:12 AM
Hi all,

I haven't posted here before but have been reading since we were told two months ago that one of my 14 month old twins has congenital scoliosis. We had out first appointment yesterday and i can't decide whether it was good news or bad news.

Basically because it is congenital scoliosis, the doctor said that bracing will do nothing for him. He said that his spine was like " crazy paving" which didn't fill me with hope. His problem is failure or formation rather than segmentation which he tells me is the lesser of two evils?? But the first step is an MRI in 4 - 6 weeks to check if there are any related spinal abnormalities such as a tethered spine or a split spine. After that it will be 6 month checks throughout his life to see if there has been any worsening. So observation is the only treatment unless at some stage they notice a change and then it will be surgery. Also when he looked at the side view X ray he noticed that there is an extra piece of "bone" ,for a better word, that they will have to look at in the MRI as it could cause problems if it is too close to the spinal cord. If that is the case then it will have to be dealt with as in extreme cases it can cause paralysis, but he said that he was just telling me the worst possible case.

He said that he couldn't predict what way the spine will grow, the scoliosis might never affect him or it might.

As i said i don't know if it is good news or not. At least it is obviously not serious enough to warrant immediate action and I really wasn't looking forward to him being in a brace for the foreseeable future. However at least with bracing I would have felt that something was being done to prevent it getting worse but this wait and see treatment feels like we are doing nothing.

I just wanted to know if any of you have any similar experiences as i am always a firm believer in second opinions and don't want to find out in years time that we should've done something at this stage.

This website is great though as when i first was told about his scoliosis i trailed through loads of websites looking for any piece of info but i cojdn't find much about congenital scoliosis until i found this.

Yvette..

jfkimberly
30th April 2005, 12:11 PM
Hi Yvette, and welcome to SSO. I'm sorry you had reason to join, but I'm glad you found us.

Was your consultant an experienced scoliosis specialist? I am led to believe by his decision to do only "six month checks" that your child's scoliosis is not very severe at this point (unless he wasn't a specialist, in which case, GET A REFERRAL!).

However, I would encourage you to pay very close attention to your child's back and shoulders in between checkups. At the first indication that unevenness is getting worse, or any sign of bumps or lumps or protrusions on his back (or possibly even his chest or abdomen), get an appointment soon, rather than waiting for your next six-month checkup. You might consider a digital camera, if you don't already have one, and taking regular pictures of his back, so you can have a record to compare to if you think it looks different but aren't sure.

What caused you to discover the scoliosis? Was it an incidental because of some injury or other illness, or is it visible?

Oh! What part of the world are you in?

sins
30th April 2005, 01:00 PM
Hi Yvette and welcome.
I think your doctor is being very sensible and ruling out potential problems.Some of the adults here like Kimberly had congenital scoliosis and had early surgery, there are others here who's curves remained stable for many years until the age of nine or ten and even up to teenage years.Unfortunately with scoliosis, there is no way to predict how it will progress.Watching and waiting is all that can be done.Take your time and read through the other threads here and you'll see that there are alternative surgical options to a fusion so put together your list of questions for your doctor.Any idea of the curvature measurement.?
Sins

sins
30th April 2005, 01:07 PM
Yvette!!!
I just saw your e mail address.You're Irish.
I'd better introduce myself a bit better.My name is Sinead Murphy and I'm based in East Cork.This year, together with two members of SSO, Michele and Pauline(both with congenital scoliosis)we put together the Scoliosis Support association Ireland.Pauline is from Dublin and Michele from limerick and if there's anything we can do, please just ask.
I presume that you're either in Temple St or Crumlin with your little boy.
Newgirl(Nicola is in Temple St with Niamh).So you'll find there's plenty to talk about.Once again welcome to SSO.
Sinead.

newgirl
30th April 2005, 04:45 PM
hi Franie,
Welcome to SSO . Will post longer later, Niamh on my lap at moment :angel:
Nicola

Amazed Jean
30th April 2005, 07:21 PM
Franie , Welcome to SSO. We are an odd lot but we can be very helpful and entertaining too. Don't ever hesitate to ask - everyone here will try to help you through whatever. i am 54 and the fossil of the group. I can keep some good thoughts for you and say an extra prayer or two. Oh my mantra is-- Get a Notebook for your child's medical stuff. Write down questions and write down what the doctors tell you. AND try to get copies of everything like the docotr's notes from each appointment and copies or photos of xrays. You are the best keeper of records. They often get lost or delayed or destroyed at clinics and labs.!

andrea
30th April 2005, 07:38 PM
Welcome to SSO Yvette. I'm really glad you found the site. I'm a mum to a 2 and a half year old daughter with ideopathic scoliosis. We are in London and she is being treated at RNOH, Stanmore with a series of plaster jackets to hold the curve. She started with a curve of 62* and is now at 35ish * in the cast. We have a mix of mums here, and the infantile forum seems to be growing larger by the day so there's a range of experiences and advice here.

If there's anything you want to ask, fire away. It's good to know you believe in second opinions and take nothing for granted.

Hope you'll stay around and let us get to know you better.

Andrea and Erin
xx

Thaleias spirit
30th April 2005, 10:14 PM
Originally posted by sins@Apr 30 2005, 12:07 PM
I just saw your e mail address.You're Irish.
I'd better introduce myself a bit better.My name is Sinead Murphy and I'm based in East Cork.This year, together with two members of SSO, Michele and Pauline(both with congenital scoliosis)we put together the Scoliosis Support association Ireland.Pauline is from Dublin and Michele from limerick
Hi Yvette and welcome To SSo

Im Michele (one of the other irish people here) Im 32 and in Limerick.
I have congenital kyphoscoliosis that has never been treated or moniterd over the years. I had one consultation last year with no real assistence and Im due to have another one next week in Dublin with Ashley Poynton at the Mater Private.

Hopefully after that appointment I will be much wiser.

Im afraid I cant give any real advice to you at present...
maybe at some stage I will be, when I know more myself.

In the meantime enjoy your stay

Michele / a.k.a Chele

franie
2nd May 2005, 06:45 PM
Hi all.

Thanks for all the replies. After having had the weekend to mull it over in my head i have accepted that we are just going to have to cross our fingers and hope that it doesn't cause a problem down the line. If it does then we will deal with it then.

I'm living in Leixlip, Kildare ( Ireland of course).

The doctor that we are dealing with was recommended to me by the doctor that found the curve in his X Ray. I had been to him a few times and the way that he put it was that if it were his son, Dowling is the guy that he would want to see. He is the head of orthopedics(sp?) in Crumlin so i assume that he knows what he is talking about. I asked him about the curve measurement but he said that it wans't relevant in this case as there is no definate curve as such, moreso he likened it to crazy paving ( zig zag ). I will be asking about that again though as i assume that there must be some way for them to compare from one appointment to the other abd if they are not using curve measurement, then what?

Both my boys had a kidney reflux problem which they had to have corrected with a minor operation. During the follow up exam which included an X ray the doctor seen the problem in his spine. It is hard to understand why it was never spotted before as they were 8 weeks premature and had spent 3 weeks in special care and still no one noticed the problem. My optimistic side is telling me that is because the curve isn't too bad.

I will definately be sticking around here as this is going to be with me until Adam stops growing and i want to make sure that i am dong all that i can for him.

Thanks again..

Yvette

Thaleias spirit
2nd May 2005, 07:34 PM
Originally posted by franie@May 2 2005, 05:45 PM
Both my boys had a kidney reflux problem which they had to have corrected with a minor operation. During the follow up exam which included an X ray the doctor seen the problem in his spine.
Yvette,

I was very interested to see that they only detected your sons scoliosis as a result of kidney problems also. That was my case also.

Although my scoliosis is congenital it wasnt visible to anyone when I younger.
It only started to become visible to us when I was about 13.

I had ongoing kidney probelms for a few years before my parents got me to a different changed doctor. Within minutes of that first appointment he knew there was something amiss and I had other tests carried out that showed I had only one kidney and it required surgery. This surgery was carried out when I was 8.

It was from the xrays carried out then that the surgeon detected my scoliosis.
Unfortately for me - even though he noted this and forwarded a letter to my doctor - this letter was put on file and nobody told my parents.

I havent had any real problems with my scoliosis over the years apart from the occassional pain.

chele

sins
2nd May 2005, 09:14 PM
Hi Yvette,
everything you've said so far sounds very encouraging.I've heard lots of good things about Dowling.Sadie(form wexford) takes her daughter to him and he's got a great reputation.
It sounds like the type vertebral malformation isn't of a high risk type so fingers crossed his spine is balanced and won't progress.There's a good article of congenital scoliosis on iscoliosis.com
http://www.iscoliosis.com/causes-congenital.html
It's a good basic explanation of the condition.I think noone detected it initially as it mustn't have appeared to be very bad or noticable.Can you notice anything about his back yourself?If the curve can't be measured, perhaps obvious scoliosis isn't evident, but it's just the malformation of the vertebrae that was evident.
Stay around and get to know the other parents here.Hopefully it'll help you as you deal with all the scans and appointments that are coming up.
Sins

titch
3rd May 2005, 08:51 AM
That's exactly the article I was going to post a link to :-) From what I've picked up over time, it seems that if there is a system of balanced problems, eg opposing hemivertebrae with a few normal vertebrae between them, they can maintain a state where although the spine isn't straight, it's well balanced and this in itself helps prevent curves from progressing.

andrea
3rd May 2005, 07:04 PM
Yvette

Erin also has renal reflux on one side and takes antibiotics daily to prevent infection. This was diagnosed at about 10 months, but despite xrays the scoliosis was never detected. It's possible that it didn't exist at 10 months though, as her case is ideopathic. I often wonder if something wasn't missed on her MRI and her case is congenital, given the number of people with both kidney problems and scoli that I've come across.

Glad to hear you're seeing a top guy and glad to see you're sticking around.

Andrea

franie
3rd May 2005, 09:52 PM
Thanks for the link to that article, it was very good.

After being told about the scoliosis we scrutinsed Adam's back and did notice the curvature and that one of his shoulder blades was higher that the other. Before we had been told about it at all we noticed that there was something amiss. As we had his twin borther for comparison, we noticed whilst Adam was sitting he was always more humped that his brother. His brother is a bit bigger and stronger and initially we put it down to that and assumed that he would sit straighter as he got older. In fact in the two months since we found out, he does appear to be sitting far straighter or maybe that is just wishful thinking. But the doctor did say that he looked far better in the flesh than the X ray after he examined him so maybe there has been an improvement.

The other thing that we spotted a long time ago is that his neck doesn't seem as flexible as it should be. He can't turn his head over his shoulder on the left side and he looks stiff when looking up. We asked if that would change or improve and were told that there was nothing that can be done. But no big deal, it doesn't bother him and it's not life changing.

I don't know if the kidney reflux in his case was connected as his twin brother has the reflux also but doesn't have scolisos, or maybe that was just coincidence.

newgirl
4th May 2005, 03:12 AM
Hi Yvette,
I was interested to see that Adam suffered from a stiff neck as well. The PHN noticed Niamh's neck was stiff to one side when she was about 3 months old, I can't remember if it was a result of her lying on one side all the time or if the stiff neck caused her to lie to one side, but anyway we were referred to a physiotherapist, who came and did exercises with us and showed me a few tricks, such as putting her cot to the wall on the affected side and having all the interesting things on the opposite side of the room. Another thing was to get a rattle and to shake it over her from the good side to the bad side. I don't know if these things would work with Adam or even if it is the same thing, but it might be worth a try with a physio. The correct term for the condition is torticollis (?spelling)

Are the twins identical? At 14 months they must be great fun :D
Nicola

sins
4th May 2005, 01:35 PM
That's interesting Nicola, my son had that at 4 months with a slightly irregular shaped head(mild plagiocephaly).Our GP has a good ortho background and we were told to reposition him during sleeping and gradually, it resolved.It has been associated with infantile scoliosis so with my own background as an infantile scoli patient I was very happy that no scoliosis appeared.He's 5 now.

Sins

newgirl
5th May 2005, 09:56 PM
Sins,
That is interesting, Niamh did have quite bad plagiocephaly also, but by the time she was seen by anyone her scoliosis had just been diagnosed anyway, so a link was not mentioned to me at the time.

Her head is fine now, it was considered just to be positional and would sort itself out when she was sitting and standing up, which it has. The big mop of hair helps as well :D
N

LindysMom
6th May 2005, 03:42 PM
Hi Yvette. My little 17 month old daughter has congenital scoliosis caused by a hemivertebrae and an area of kyphosis which is caused by a complete anterior failure of segmentation. She is scheduled for surgery in a little less than three weeks from now. Scarry stuff. I know how scarry it is for you. Especially in this early stage because things are still so up in the air for you.

I must admit that I'm always a little distrustful of any doctor who wants to do the "wait and see" approach" with cases of congenital scoliosis. It goes against everything that I've been told by litteraly some of the best doctors in the U.S. It does sound though like your son's case is a little bit different from my daughter's. However, if I were you, I would get a second opinion before I settled on any course of action. Hopefully your little boy will be able to avoid surgery. That would be great. Just keep asking questions and educating yourself on this. Because congenital scoliosis is a rare condition, not all doctors are as familiar with teatment as we would like them to be.

I wish you both the best. If you have any questions, please feel free to get in touch with me. I don't know how much I'll be able to help you, but please know that you aren't alone in this. There are other moms out here who know exactly what you're going through. Keep coming to this site. I know it's helped me in my lowest moments. Good luck!

How old is your little boy?