re: My baby son just diagnosed w/ CAH
Sep. 11th, 2002   12:57pm

We have a daughter who is a very very healthy 6 years old. We have been very fortunate to have her very well monitored. She has only needed an injection once, luckily my mom is a pediatric nurse so she came over to give it.

The best things you can do for your son are to make sure you are completely confident in your endo, do not be afraid to ask tons of questions(believe me they have heard and seen it all), always give his medicine on time(but don’t stress out if you are late) and try to enjoy life. It is terrifying in the beginning but each day you will become more comfortable. Once his levels are set it is a very manageable condition. We now have 2 yr old twins and noone is treated any differently(except in illness).

As far as growth is concerned, with a good endo and regular bone agings and bloodwork you should not have any issues. Our daughter has always been on track in regards to that.

My only concern with alcohol would be in regards to vomitting and missing meds. As long as your son understands his condition he will responsible for himself.

I can’t stress to you enough that  once you get through that scary first year life does get easier and while you will always have concerns just remember that first and foremost they are just kids and will get skinned knees. Let them enjoy youth. If they are well monitored they are just like any other kid (with obvious exceptions).

God Bless

alyssa janelle
Rare Disease Search Engine, Homeschool Sites, Online Homeschool, Online Income, Ethical Adsense, Creative writing, Family Web Hosting, Christian Radio, Tulsa Parks