View Full Version : Congenital Kyphosis
10th September 2007, 04:29 PM
Hi there I posted here a few months ago. MY son who is 15mths old has a kyphosis on his L2 vertebrae. We have been through a battery of tests for storage disorders that this is a common symptom of . Luckily those tests came back neg. We are now going to get a ultra sound on his kidneys and an echocardigram on his heart to be sure that those were not affected in utero as well. We have no reason to be concerned as he is a very healthy little guy . I have been so stressed out by this whole process and scared to death. I can't seem to find out a whole lot of info on congenital kyphosis. We have been referred to a great pediatric orthopedic surgeon who says for now he will continue to monitor Wesley (curve is at 45 degrees). He says that if it gets to 60 degrees he would fit him for a brace.
Any input or insight would be greatly appriciated.
10th September 2007, 07:03 PM
I'm afraid I don't know much about the congenital kyphosis but I can send you some hugs and tell you that you are among friends. I wish you the best and hope things go well for you and your son.
20th September 2007, 02:51 AM
I am feeling so overwhelmed by all of this and can't find anyone to relate too. W has testing next week and I am so scared that they will find something with his heart and/or kidneys. There are no signs of any problems but you never know. I am so sad this is my angel, we waited so long for him (he was adopted at birth) I am so scared that something could take him from me.
20th September 2007, 07:22 AM
We went through the kidney and heart scans/tests and I know how you feel. It's awful having to do it but you will get through it. We didn't know about Cerys' back at this point but she was diagnosed with BOR syndrome which affects the hearing and kidneys. The geneticist then picked up her heart murmur. All the tests thankfully came back clear. We did pay to have a private kidney scan as the nhs wait was a few months and I couldn't wait that long to find out!
I'll be thinking of you next week - let us know how you get on :squeeze:
20th September 2007, 08:34 AM
I can't really add anything I'm afraid, but just wanted to send my support and some gentle hugs.
:squeeze: :squeeze: :squeeze:
20th September 2007, 07:09 PM
Jenny, try not to worry... most likely if there was a problem, you would have seen evidence of it by now. And if it's just being sneaky, then it may never really be a problem. I'm 34 next week, and I have one kidney ("horseshoe") as part of my congenital syndrome. I've known about it for as long as I can remember (it was discovered after they checked when my congenital scoliosis was so readily detected at birth). It's never been a problem. I have a normal, unrestricted diet, and everything is just fine.
I do have a mitral valve prolapse with regurgitation, which could be part of the syndrome, or just inherited from my mother. We monitor that every year, and some day I will need to have the valve replaced. But like I said... I'm 34 next week and still living a normal life.
20th September 2007, 11:16 PM
I have a mitral valve prolapse also. Have had it for a long time and they only warn me to take antibiotics if I have oral surgery or something else potentially putting bacteria into my blood stream. The theory is that because the blood that tends to pool near that valve when its prolapsed invites and harbors those kinds of bacteria. That's my best understanding of the whole prolapse thing. At any rate its been about 15 years and I have had no trouble.
21st September 2007, 10:29 PM
Thank You everyone!
I am just feeling so overwhelmed. I just have to focus on the fact that Wesley is a very happy and healthy baby boy. If there was a major issue I am sure we would have seen a sign of it within the last 16months
25th September 2007, 06:47 PM
So we went for our kidney ultra sound yesterday. We won't know anything about that until we see the ortho surgeon on Fri. They freaked me out a bit because they took a long time on the right side. They also did something with some colours on that side too. Hubby says I am overreacting , I guess we will have to see.
25th September 2007, 07:12 PM
Try not to worry too much, I know that's easy for me to say, but make sure you quiz your surgeon relentlessly on Friday! :P
Please let us know what he says...
25th September 2007, 08:18 PM
They took a long time with Cerys's scan too. Her heart scan took at least half an hour. Cerys is very good with all of the medical stuff but she hates having scans. I don't know if it's the jelly or the fact that they seem to press on quite hard.
I know what you mean though. I sit looking at the scan and I have no idea what I'm looking at! They sometimes measure the blood running through various sections so some of the time may have been taken up by that.
Let us know how you get on with the appt on Friday
Love Ella x
26th September 2007, 01:49 AM
I assumed that it could have been blood flow as well, It's just so hard to wait and the technicians are never easy to read ( I guess they have to be that way). At least when we go for the ecocardiagram on Thurs they consult with us right after. It's just so hard to see my baby going to these tests and even harder for me to believe that something can be wrong when he is so healthy , he rarely even gets a cold and when he does it doesn't keep him down for long.
Thanks again for listening everyone.
29th September 2007, 01:27 AM
So we had our Ortho appt. today. Wesley's curve has stayed the same (his upper back is looking a bit better). He saw that there was a b1it of twisting but feels that a checkup in 6 months was all we needed. While sitting in the waiting room we heard lots of good testimonials about our Ortho. We are clear on the heart and kidneys and will need no other follow up appts.
I am so glad all the "just in case" appts are over.
29th September 2007, 11:20 AM
Jen that is terrific news! Am so happy and relieved for you right now. Not having to see the ortho for 6 months is also great!
You can now go bacck to being a relaxed mom and having fun with your son without all that hanging over you!
29th September 2007, 02:40 PM
Excellent news, I'm really pleased for you both :D
29th September 2007, 03:35 PM
Thats great news, enjoy some fun time with your wee man you both deserve it.
29th September 2007, 09:25 PM
That is great news! Maybe you can take a deep breath and relax a bit. Being a Mom is really hard work!
29th September 2007, 10:52 PM
Jen, I'm relieved for you! While scoliosis isn't exactly a picnic, at least that's "all" you have to worry about. Now focus on getting the best care you can to maintain stability and hopefully avoid surgery (or at least put it off until good torso length is achieved!). *hugs* Congrats on the healthy scans.
30th September 2007, 11:56 PM
Thanks all! I cannot tell you all how relieved I am. The Kyphosis is going to be a condition that will need continued monitoring but we can handle that. I am glad though that I have found this site and all of you wonderful and resourceful people.
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