Re: baby boys with salt losing CAH
5/21/99 6:56 AM
I too have a son with salt-wasting CAH. He was 4yrs in Feb. I also have a 6yr old non-CAH daughter. Overall both our children are relativly healthy but I have to say my daughter catches more than my son. He was diagnosed at 4 days old and was hospitalized at that point for almost a week. Other than that he has never had to go to the hospital. We have had two situations with him throught the years with vomiting and both were handled at home. The second time was just a short time ago and we even had to administer an emergency / injectable dose of the cortisone at home. Of course we did it with the help of the endo on call from the Children's Hospital in Boston that our son is treated at for his CAH. We have tried very hard to deal with things as they come, and at home. Of course this does not mean that we put his life at risk but we strongly believe that this is a way of life for us as a family and we don't want either of our children to learn that being sick means running to the hospital, immediately. It's very important for you to get as comfortable with everything as you can. We have a wonderful endo that he has had since his diagnosis and I would be devistated if we lost her. They bonded with eachother immediately and it is so important to have a good relationship because this person will play a big role in your families life. We have given all the immunizations with the exception of the chicken pox because I'm not sure how I feel about it yet. It has nothing to do with the CAH. Our daughter has not yet received it either. Our son has always taken the pills. We used to crush them in a spoon and add to a very small vile with fomula. When he was in the hospital, when diagnosed, the nurses used to give him his formula in a small vile that only the hospitals get, it's plastic with measurements on the side. It comes with a cover for storage and you can also screw a nipple on it. I had my pharmasist get me a box. Of course I had to purchase 50 of them but it was worth it to me. This allowed for us to put it in a very small amount and know that he got all his meds. We used the disposable bottles for other times so I feared that the meds would get caught in the plastic liners. He takes his 1/2 tab of cortef and 1 tab of florinef in at 6am during the week and can take it as late as 8am on weekends, he takes another 1/2 tab of cortef at 1pm and a full tab of cortef at 7:30 pm or later (bedtime). At birth they had us giving it at 11:00 pm. We did this for about 8-12 mths but it became very difficult on mine and my husband's moods. Our daughter was also going through the night terrors, very badly, so we had broken sleep all night long and this didn't help the situation. Our doctor finally agreed to give it at bed time and his blood work has never indicated any problems with this. He has grown very nicely along the 25% all along. I remember when he was diagnosed I was so concerned as are all parents. When our pedi told us of CAH we had no idea what it was then when he mentioned ambigious genitalia I almost died. You see I have a second cousin, female, that was born with ambigious genitalia. Never had I heard "CAH" mentioned. So naturally I blamed my gene pool. Fortunatley the doctor quickly explained that both my husband and I had to be carriers. I hope you have found this and the other messages helpful. I only found this board around the 1st of the year I only wish I had this type of support from the beginning. Good luck!
Judy
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