Hi Karen and welcome to the site!

I started this message board a while ago and only recently feel it
is serving a purpose. It sounds as if you have experienced what
most of us have experienced, only in triplicate. I am so sorry to
hear about the loss of your daughter because the doctors didn't
cathch the Addisons. It still amazes me that in this day and age so
many children are not being properly diagnosed. My own daughter is
now 34 and she was misdiagnosed for the first three and a half years
and we did almost lose her.
Karen, where are you from? I live in new York State just outside of
NYC. I have made contacts in many pats of the world and could
direct you to some other mothers.
My daughter has hypoparathyroidism, Addisons, Pernicious Anemia,
Diabetes and malabsorption. Not a fun list at all. How old are your
girls?
Dehydration is a major problem for my daughter also. She just got
our of the hospital last week after two days of IV's because she has
stomach problems.
I am going to email you directly also and give you some further
information.
Let's stay in touch.
Best wishes,
Linda

--- In apeced@yahoogroups.com, "karenza_58" <karenza.glover@...>
wrote:
>
> hi everyone,
>
> came upon this site as I was browsing apeced. I am a mom whose
> three daughters diagnosed with apeced. All three followed same
> progression. Firstly hypoplasia of enamel of the teeth which was
> not recognised as a symptom of anything else. Next my eldest
> daughter suffered from fits, diagnosed as hypocalcemia and
> parathyroid failure and treated as such. Unfortunately she later
> died after a minor operation. Found to have adrenal failure. My
> other daughters had already been diagnosed with parathyroid
failure
> and one had severe candidiasis in her fingernails. They were then
> tested for adrenal function. Both were found to be low and apeced
> was diagnosed. Since diagnosis one daughter has lost thyroid
> function and both have lost ovarian function. Interestingly these
> two daughters are identical twins, but one seems to cope with the
> condition better than the other. They both seem to follow
> progression closely, but the elder twin has had problems over the
> last few years which seem to relate to dehydration. She only has
to
> get a slight cold and ends up in hospital. This year she has
spent
> 8 months on and off in hospital. She also suffered from severe
> cramps in her legs which often left her immobolised, during last
> admission this has been sorted (hopefully) low pottassium and
> magnesium. She also suffers from acute lethargy (linked I think
to
> adrenal function. I have never come across anyone else with this
> condition and would love to hear from others who suffer from this
> often misdiagnosed condition.
>
> Karen.
>