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9th November 2005, 03:39 AM
I just found out from my Daughter's dr that she has some fused ribs and a badly curved spine. We have been referred to a orthopedic surgeon. My Daughter is 15 months old and very little, she weighs 15 lbs and is 26 inches. We were sent for a bunch of test last week due to her weight and today at her appt we pointed out her uneven shoulders so we were sent for xrays. She does walk and for the most part looks ok. I am not sure what to expect next. Anyone in a similar situation?
9th November 2005, 07:43 AM
I'm so sorry for the circumstances which have brought you here, it really must be a very difficult time for you. We've got several members who have various different situations with young children who have scoliosis, so hopefully one of them will be around to reply soon.
Meanwhile, as it might help us a little in terms of offering what advice we can, can I ask where you're based? And also, you say that you've been referred to an orthopaedic surgeon, is this a spine specialist? I think it will be very important for your daughter to be seen by a scoliosis specialist rather than a more general orthopaedic surgeon.
Again, I'm sorry for the circumstances that have brought you here, but I am glad that you have found us :-)
9th November 2005, 10:41 AM
Let me echo Titch: I'm sorry for the circumstances that have brought you here, but I'm so glad you found us. I'm not the parent of a child with congenital scoliosis; I'm an adult survivor. I was diagnosed within days of my birth, way back in 1973. Mine was so severe that by the time I was 11 months old, I had a thoracic fusion. With your daughter already being 15 months old when diagnosed, she is doing so much better than me (although her weight is alarmingly low--have they determined the cause, yet?).
Anyway, there are several parents on this site who can offer you some coping tips and share your worries and frustrations. I'm just here to tell you that things can turn out okay in the end. Your daughter's prognosis is so much better than mine was, even, because medical treatment for congenital scoliosis is much more advanced as compared to 30 years ago.
I would be happy to answer any questions you might have. Hang in there. This time right after diagnosis is probably the most difficult, but your family will get through it.
9th November 2005, 10:52 AM
Hello and welcome. I can really add much more other than you're in the right place. There's a wonderful group of people here with wealth of knowledge. Stick around and I hope you get positive results for your daughter.
9th November 2005, 11:04 AM
Just wanted to say hi and :welcome2: Hope we can be of some help to you!
9th November 2005, 11:09 AM
Welcome to SSO Tammy.
I know it is a shock to get a diagnosis like this but let us reassure you that the treatment now for scoliosis is excellent. I was diagnosed with congenital scoliosis when I was 2 and my spine was fused when I was 13 after two years of wearing a Milwaukee brace. This was back in the 1970s (I'm now 39) and this kind of delay in treatment just does not happen now. Even as it is, although my scoliosis is worse than if I had been treated earlier and with today's approaches, I live a very full and normal life! As the others have said, do make sure that your daughter is under the care of a specialised scoliosis consultant from the beginning, it makes all the difference.
Good luck and please let us know if you have any questions. :-)
9th November 2005, 12:12 PM
Hi Tammy, i can't add any more than has been said above. I just wanted to say hello and welcome to the site
9th November 2005, 01:54 PM
Welcome to SSO. My 2 year old daughter was diagnosed with idiopathic scoliosis at 9 months old and is currently being treated with plaster casts.
As the others have said treatment for infantile scoliosis has improved and hopefully you will be referred quickly to the appropriate specialists. Have they found any reason for her small size or will they continue investigating that issue seperately. It is quite light for her age but my daughter only weighs about 23 lbs at 26 months and we have been told that there is no reason to worry at all. She took a huge growth spurt at about 20 months and is now about average height for her age but is still very light. However she is very healthy and robust and is full of energy.
Where are you based, we are in Ireland.
9th November 2005, 03:03 PM
Thank you everyone for your warm welcomes. I plan on talking to the dr/nurse ths morning for the referrals. I am in Utah.
9th November 2005, 08:49 PM
The VEPTR is being used widely for congenital scoliosis and fused ribs, specifically.
Most little ones with these issues are small - I've read it could be related to lung function related to the fused ribs.
Another great site to check into is VEPTR.com.
9th November 2005, 09:37 PM
Hi Tammy :welcome:
You have come to a great group for support ! I hope everything goes well with your appointments. What hospital are you planning to see and which doctor ? Dr. Smith is apparently a very good doctor in Utah and he's doing the VEPTR surgery - I don't know if this is something you want to pursue but I thought I'd throw it out there :-)
9th November 2005, 10:02 PM
Hi Tammy, and welcome to SSO. The time after diagnosis is indeed the most difficult time of all, and all I can say is that it does get better. My daughter (now 3) was diagnosed about 16 months ago and has been in plaster jackets ever since. However, these are often ineffective in treating congenital scoliosis and you may find that your specialists suggests surgery. Although it's frightening, they can do fantastic things now and your little one faces a positive future.
Unfortunately I'm in London, UK, and have no experience with US surgeons or specialists. Once you are in full possession of the facts and likely/suggested treatment, things will feel much better. Please let us know if you have any questions.
Hope you keep in touch. Take care
10th November 2005, 03:54 AM
We went for the full body xrays today. We found out thru her pediatrician that her curve is 35%. He referred us to John Smith. We have an appt. for Nov 30th,they were booked until Feb. but our Dr. got us in and apparently Dr. Smith already looked at the xrays and said let get them in sooner. Does anyone know if fused ribs lead to surgery? How do I know if we need a second, third opinion. What forms of treatments could he suggest. Thanks
24th November 2005, 04:04 PM
Hello sorry i missed you till now. My daughter is 28 months and was diagnosed earlier this year, we have had a few delays and haven't been given much information so i'm afraid can't help with anything that side of things but as the parent of a youngster i can maybe help with any other queries about the day to day kind of thing. We are in the UK.
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