>Hello Tamiko,
>My name is Katherine and I am from Ecuador, South America.
>I have a 6 month old son with Achondroplasia and I would like to get
>the "Health Supervision for Children with Achondroplasia", how can I
>do it. I am worried about Kyphosis, do you know any treatment.
>
>Thanks,
>
>Kathy
>

Hi Kathy,

This link http://www.aap.org/policy/00696.html will take you to the
online copy of "Health Supervision for Children with Achondroplasia".
It's on the Little People of America website, and this site is a
wonderful resource: http://www.lpaonline.org. From the home page, go
to the lpa online library and there's lots of medical info there.

As far as kyphosis goes, all kids with achondroplasia will have some
degree of kyphosis until they start bearing their own weight, or
walking. There are things you can do to try to prevent the curvature
from becoming permanent:

-Don't prop them up with pillows to help them sit up if they aren't
ready. If they can basically sit up all by themselves, it's all right
to give a little support, but if they're super floppy and always
sliding to one side or the other, let them lay flat.

-No umbrella type strollers, or baby carriers that allow the back to
slump. We used a hard backed stroller (with padding), and didn't let
him sit up in it until he was able to sit without falling from side to
side. When he was 6 or 7 months old, I found a baby carrier
(front-pack) made by KELTY that had a hard back, instead of just
fabric. We used it extensively and he did great.

-Don't spend a lot of time in the carseat if you can help it.


All you can do is try to minimize the stress on his back. He doesn't
have the muscle tone right now to keep his back in alignment. When he
gets older, in better control of his body, his back muscles will tend
to pull the spine into place. I think most kids outgrow it, unless
there's a lot of sitting activity before they're ready, then the
kyphosis can become permanent.

Even if he ends up with some degree of curvature, there are a number
of options for treating the problem: external bracing, internal
bracing or a combination of both. We all hope our kids will avoid any
major complications and will do anything to help prevent it. You can
only do your best, and realize that even if you do everything right,
there may be complications...and it's not your fault, or always
within your grasp to prevent them. Should they happen to your son,
the best thing you can do is what you're already doing--getting the
best information available.

We were lucky and Eli's kyphosis went away on its own. Now he has a
bit of the opposite problem: swayback, but not too bad :)

Anyway, good luck and I'm happy to be able to help a little!

Tamiko, Eli's mom; almost 4 with achondroplasia, trach and a huge fan
of railroads.