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Oh, my gosh, your letter brought great tears to my eyes, and are still there as I am writing you. Bless you and your little baby boy, and rest assured you and he will be just fine. I'm not sure how you got my e-mail address, probably through the web, as I posted my story in the CAH notebook. I'm glad you wrote. I felt the same way you did, so overwhelmed. Why me, I did everything right, but as we know, it has nothing to do with what we did, as to who we married.
My daughter, Angela, is now 5-1/2 years old. She was diagnosed at birth. Angela is also a salt-waster. Angela was diagnosed immediately because her vaginal area was ambiguous (big). She look swollen. Fortunately, I had doctors where lights and bells went off to them ,and before I could even hold my darling little girl, they took her for testing. I didn't know for 3 days if she was a boy or a girl. Although, I always new in my heart, she was a girl, even before she was born, I said "its a girl". My husband always thought it would be a boy, you know that guy thing! She had corrective surgery at 3 mos. and 13 mos. and looks like any other girl. I thank God for the wonderful doctors we have here in Pittsburgh, PA. In any event, she has been on meds since day 4 of birth. She currently takes 1 florinef tablet a day and cortef 3 times daily at 3 cc's. As they get bigger, the cortef increases to supply them with what they don't produce. Her florinef has never changed and has never had any high blood pressure problems.
Get use to the poking and proding, as it will continue through their lifetime. Angela went through all of that, as all CAH children do. However, once potty trained, you collect their urine for 24 hours and they can analyze that instead of blood testing. Although, my doctor still, to be on the safe side, will also do a blood check ocassionally. She also had her had x-rayed for the first tiime at our last visit. Apparently, they can tell through an x-ray how their bone growth is progessing. Happily, Angela is normal. I like normal!! Normal is good.
Rest assured, it gets so much easier as you get into the routine of things. Don't worry about teething. You don't need to increase any meds or give a shot for the fever unless it is extremely high. You learn these things as time goes on. Low fevers are natural and you need not concern yourself with it too much. Ear infections, Angela had many. Those were my problems in her baby years. I had to increase meds a few times, but its no big deal. They get through it with flying colors and so do we. I have only had to give her a shot once. She got the rotavirus at 3 years. Vomiting, diarrhea. It was horrible. To this day, I pray my daughter never gets that again. They can't kept their meds down because of the continuous vomiting and diarrhea and a shot is definitely what they need. They bounce back pretty quickly after their shot. Dehydration is a scary things with our CAH children. But as time goes on, you become more comfortable with your child symptoms and you know what to do, and more improtantly, when to do it. But my first 2 years I too, was on edge. Try not to let it ruin all those wonderful moments you go through with them because of CAH. Everytime they cry, is not a crises. They are usually just hungry. You will be able to give him everything he needs. It just takes time to become comfortable with your new situation. Once you have conquered that, you will feel more confident and comfortable with all you do for your son.
Please write me and let me know how he is doing. I love hearing from other moms, as I too can share in your trying but wonderful experience as being a mom with CAH child. We are truly lucky, because it can be controlled with their meds. If your comfortable, let me know where you are located.
----- Original Message -----From: Anna MillerSent: Sunday, January 09, 2000 9:40 PMSubject: [adrenal_hyperplasia] Re: My Baby boyWell I just found this group, so this will be my first official post...I gave birth to a baby boy November 1'st who has been diagnosed with the 3-Beta Salt waisting form of CAH..To date Jacob is doing well, He spent his first week in an NICU unit, and it wasn't until he was two weeks old that we were given his diagnoses..Jacob so far hasn't had any set backs, although at immunization time I was a mess worrying about a fever from the shots..He did great...wish I could say the same for myself..Ugh, does this ever get any easier to deal with? Granted I am only 9 weeks into this but every time he feels even a little warm to me Im right there with a thermometer up his butt..I feel so terrible for him, He gets weekly bloodwork drawn, and has been pricked prodded and poked too many times for me to count...Presently his meds are full tablet of florinef in the A.M., then half in the afternoon and another half at night, as well as 1/2 mil. cortef twice daily..He has been on this dose for about three weeks now, we along with his Endo, have found that any less of florinef and his sodium drops dangerously low, although at this doseage he has developed high blood pressure....it feels as though were damned if we do and damned if we don't...Will it always be a battle to keep his levels where they should be? I don't even want to think about the year ahead with teething, my older son developed a fever with each new tooth...Please forgive me if I have complained too much, don't get me wrong, I would and will do anything I have to, to assure my little guy has everything needed to keep him happy and healthy..He is my little miracle, and I only hope with gods help that I can give him the life he was sent here to have...It is all so overwhelming at times, and I would appreciate any advice you may have to offer me..thanks so much....
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