PDA

View Full Version : New here and so confused



Jennycat
13th June 2007, 05:42 PM
Hi there!

I am new to the board. My 12 month old baby just had x-rays on the "hump" on his lower back. He has had it since birth. The Dr. said that it is due to an underdeveloped vertabrae in his lower lumbar. He said it is mild and could correct with time or it may not. He also said that my son is going to be monitored as he is now at a higher risk for scoliosis. The x-ray showed a 50 degree (bend?).

We have been reffered to a piediatrition who we will see tomorow. I am such a nervous wreck. My concern is that it will get worse, how often does it correct itself?
My son is meeting all his milstones and exceeding in some. He does not appear bothered by it at all. I have not found much on the net about Kyphosis in the lower back. Anyone have a similar experience?

Any info is greatley appriciated.

Jen

tonibunny
13th June 2007, 06:30 PM
Hi Jenny, welcome to SSO :welcome2:

I'm really sorry to hear that your son has problems with his back. I'm surprised that the doctor thinks that his kyphosis may correct with time, as usually congenital problems (ie those that are caused by poorly developed vertebrae) are likely to progress.

Is the pediatrician you are seeing tomorrow an orthopaedic specialist? It's important that you get your son seen by one as soon as possible. Whereabouts in the world do you live, and which hospital is your son being seen at?

Toni xx

Jennycat
13th June 2007, 06:37 PM
Hi there!

I am in Ont. We would likley see a doctor in Kingston at KGH . I am unsure if we are seeing a specialist or a reg peiditrition. I am just so so scared.

Amazed Jean
13th June 2007, 07:03 PM
Jennycat, Hello and welcome to SSO. Of course you are worried - you wouldn't be normal if you weren't worried. Here's what is important... You are doing everything you know how to do for your infant. So good job so far! Take a deep breath and remind yourself of that every single day. On the practical side of things get a notebook and start writing everything down that you have questions about. Take the notebook with you to your appointments so you can notedown answers as you get them - I promise you will forget some of the questions and answers because of normal parent nerves. You might also try to get copies of any xrays , scans etc. You are going to need these for a very long time -until your child is old enough to take on their own medical care. It doesn't mean that you can't be helped it's just that you'll need to show any further doctors xrays etc. and possibly avoid duplicate tests. Good Luck and keep us posted!

tonibunny
13th June 2007, 07:26 PM
I'm going to move this thread to the infantile forum, so that the other parents there will see it and help to support you Jenny :squeeze:

Toni xx

michelle wessollek
13th June 2007, 09:03 PM
Hi my son has hemmi vertabra through out his spine and was born with congintial scoli .I cannot stress enough how important it is to see a pediatric ortho never a chiroprater.It sounds like your son has hemmi vertabra thats when the vertabra dosnt develope all the way.Keep us posted on what the Docs say if if you have any ? I would be happy to try to answer.

Jennycat
13th June 2007, 09:09 PM
Thanks so much everyone. The x-ray just showed one that was underdeveloped.

Michelle has your son had any surgeries to correct?

michelle wessollek
13th June 2007, 09:41 PM
JennyCat, Yes James has vepter implants he has surgry every 4 to6 months.Vepter allows for the lungs and spine to grow.Were as spinal fusion does not.When he is about 16 or17 (when his body is done growing) He will have a spinal fusion .He had a 55 degree curv when he was born.He was about one and a half when his curv progressed to 63 at that time we were recommended for this surg.If you have any other ? or need info please feel free to ask.

Jennycat
13th June 2007, 10:00 PM
Is there a diffrence when it is not scoliosis? As we have not been identified as such yet. They just say that there is an increased risk of this. Our Dr has mentioned Kyphosis but he didn't say that wa a diagnosis eiather

I am jist so confused and terribly scared

michelle wessollek
13th June 2007, 11:08 PM
Hi Jennycat I dont know much about Kyphosis I think thats were the spine bends forward as to scoliosis is were the curv or curvs go to the side.So I dont know what choices there are as far as surgical treatment for Kyphosis.I did type in Kyphosis then hit search and it brought up some info.

tonibunny
14th June 2007, 12:00 AM
That's right, kyphosis is where the spine curves back too much. Scoliosis is where it curves laterally (from side to side), and lordosis is where it curves forward too far.

It's unusual to have a child with kyphosis, especially in the lumbar region, but as this is a congenital problem I would imagine that the approach towards treating it will be similar to if it were congenital scoliosis. There are several options for this so it's impossible to know what his specialist will suggest but as Michelle says, it is VITAL that he is seen by an orthopaedic spinal specialist.

Keep smiling Jenny, we're all here to support you and your son :squeeze:

Toni xx

Jennycat
14th June 2007, 12:47 AM
I was wondering about Lordosis as well. It is hard to tell by looking at his back which way the curve is going. It is close to his bum so maybe it is goinh inwards and the "hump"is the regular part of his back.

andrea
14th June 2007, 11:36 AM
Hi Jenny and welcome to the site. I'm sorry to hear about your son's diagnosis. We'll help you through it all we can. I know little about kyphosis or congenital issues, so I'll probably be of little practical help, but there are plenty of members with experience so there'll always be someone to hand.

Good luck with your appointment today.
Andreax

GillyG
14th June 2007, 09:52 PM
Hi Jenny, :welcome:

I've been doing a little 'surfing' and came across these pictures which I think show the two conditions of kyphosis and lordosis nice and clearly.

http://i18.tinypic.com/52bcqpi.jpg

http://i13.tinypic.com/5y9sktx.jpg

Hope this helps!

Gilly xx

michelle wessollek
15th June 2007, 04:06 AM
Hi Jennycat I was just wondering how the appointment went today.When you get time and feel up to talking please let me know.Youre in my prayers.

Jennycat
19th June 2007, 01:28 PM
Hi all,


Well we have been on a whirl wind. We go for more x-rays and a urine test today. They found dimpling in his bum and think that could mean Spina Bifida of some sort. They siad that it is a very good sign that he is developmentally on target for his age.

I just want answers so we cam move forward.

Jen

andrea
19th June 2007, 01:40 PM
Jen, I'm so sorry that things are still up in the air for you. It's so hard when you don't have the facts as you can't move on. Good luck with the xrays and test today. We'll be thinking of you

Andrea
x

michelle wessollek
19th June 2007, 04:07 PM
Jennycat I will be praying for your little man and for you and your family .Its so nerve racking when you dont know answers about your child,just hang in there youll have answers soon.Godbless

RugbyLaura
19th June 2007, 05:31 PM
Hi Jen,

Hope all went well today. We're thinking of you.

Laura X

Jennycat
20th June 2007, 12:20 AM
Thanks everyone, We had our three x-rays and a urine test today.

Now we wait.......

RugbyLaura
20th June 2007, 10:25 AM
For how long?

newgirl
20th June 2007, 02:25 PM
Hi Jenny,
sorry to hear that you have been having a tough time.
Just to reassure you a little bit, my daughter has a dimple at the base of her spine also (as do I) and she was investigated for Spina bifida Occulta which turned out to be negative. However I did a bit of research at the time and it appears that this is very common in the general population and indeed many people are not even aware that they have the condition.
These are 2 nice articles which explain about it.
www.spineuniverse.com/displayarticle.php/article234.html
www.asbha.org.au/Occulta.htm
I hope that this helps a little bit as I know how hard it is to be in limbo and not knowing what is going on.
Take care
Nicola

scolioscott
20th June 2007, 04:42 PM
Just wanted to say hi, and hope you hear soon. It's so difficult waiting to hear about your kids when you know something is wrong, but you don't know how wrong.

Good luck anyway.

H 8)

Jennycat
28th June 2007, 02:32 AM
Hello everyone!

X-rays are back, and no further curvature or smaller vertabrae. Just waiting for the MPS test. I am still so freaked out from this experience that I don't even know from here.

Jennycat
23rd November 2007, 09:38 PM
Well I haven't posted for awhile, I have learned a bit more about W's kyphosis. I have good days and bad, I don't worry so much about his back, we are in good hands with W's Ortho ( I have read up on him and have had excellent recommendations.)

When we were going through testing with W as to "why" this disruption in utero happened we came up with nothing. After being tested for Muccopolycarides (2 neg tests) and being told numerous times (even by the Ortho) that a gibbus in the L2 vertebrae is a common trait of such storage disorders I live in fear that maybe the tests were wrong even after being examined by a geneticist who said that there no other signs at all that would make her believe that it could be that.

I think it's that it's heard when somethings just can't be answered, and that a congenital kyphosis seems to be so rare and in the L2 seems even rarer.

I should be overjoyed that there are no other health concerns, heart, kidneys and liver are all great.

Thanks for listening

Jen