ATTENTION MEDIA & OTHERS SEEKING INTERVIEWS!
If you represent a media company, are a student writing a report or anyone interested in interviewing our visitors, please seek permission (see email address at the bottom of the page) before posting your requests or emailing solicitations for any talk show, magazine, thesis, census or other interview on any message board on this site. If not, your posts WILL be removed. Please respect the privacy of our members.
WILL SOMEONE HELP ME WITH THIS WHOLE BONE THING BOUT TO GO CRAZY!!!! Mar. 12th, 2008 12:03am
I am very use to this cah thing. I dont know everything but I thought I knew just about all there was to know until my last visit at the endo he told me it looked like my daughter had began to get breasts. I thought I heard him wrong. She was only about 10 months at the time. He said the next time he sees her he might do a bone test. What is that??? I never asked questions. I just walked away wondering what else my daughter could go through besides what she already has. We have an appointment on thursday and the dr. is right she does look swollen. Now i am even more afraid than before. Yesterday I looked up on the internet some stuff about this whole bone thing and I still dont understand. However my son ,5, also has cah so this means he could get it to. The way the internet says its like these children dont have a chance. I dont want anything to happen to my babies. All I keep reading is how they can get so much different stuff from being on the meds. It just doesnt make sense to me at all. I thought if their meds were given to them on time and when they are sick you give the injection and get them to a hospital they would be ok. And when we go to the endo he and his staff act like its nothing to worry about. why is this. I worry everyday that they will die or be severly sick. I know that sounds going way to overboard but " as all of you im sure" my kids mean everything to me. and im sure you all have either felt this way or are feeling this way. I know thesalt wasters are very sever but does anyone know if they have a decent life expectancy??? Does anyone have anyone or is there anyone on this board that has the swcah? If so how old and what have they gone through? Is it possible that my kids will be ok or do I have to be prepared for something I dont want to have to be prepared for? I am so sorry to bother everyone with this but I hurt so bad for these kids and I almost lost my son a month ago. He had diarea and was vomiting very bad. I thought he was ok because he kept his meds down and then the vomiting stopped. But then the diarea started about 5 in the moring. He has never had this before so I rushed him to the hospital. I didnt give him his injection. I have never had too. I knew he had to have it but I thought it was only when he couldnt keep his meds down or when he broke something. He wouldnt respond to anyone and his blood pressure dropped very low. We had him rushed to the childrens hospital and they stablized him. The only time I have ever been that scared is when he was born and they didnt diagnose him because it wasnt part of thenewborn screening. Anyways if I would have lost him that day it would have been my fault and now I have to make sure it doesnt happen again!! Am I worring to much?? I just love them and want to keep them safe! Please help me with some kind of advice. Sorry it took so long i really needed to vent. someone please give me some hope. thank you
