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8/2/00 9:00 AM
Hi Jennifer, You have found a wonderful place for advice and comfort. I have a 20 month-old son with salt-wasting CAH. I remember that for many months nothing made sense when after he was diagnosed. I had never heard of this disorder and had never met or seen anyone with adrenal insuffiency (I work in a hospital). I could not believe this was happening. In the beginning we were told to put 1/8 of a teaspoon of salt in every other bottle of formula.But please remember every child's metabolic needs are different and that each Endocrinologist can differ on this issue. If they are checking your child as often as you say, they will know right away if the salt amount is appropriate and can adjust accordingly. Is everything going OK with giving your baby her medications? You will find lots of advice about this along with dealing with fevers or any stress your child may encounter. Our family has been through alot over the past 18 months, and I would be glad to answer any questions via e-mail if you like. Most of all, your daughter will live a normal life because she has such special parents who love her enough to look for answers! Michele
Michele
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