--- In apeced@yahoogroups.com, "lsquittman" <lsquittman@...> wrote:
>
> 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.
> >
>
Hi Linda,

Thank you for your reply to my message. I am sorry your daughter has
recently had another spell in hospital. Although I think you get
used to it I know that as a mother you still worry greatly everytime
they are admitted. Dont know about you but I worry everytime that
they will find some other new manifestation. They have recently
tested my daughter for malabsorbtion and diabetes insipidus
thankfully both are negative at this time. As I said previously her
sister seems well and has just started university, she is due to
start university in february but worry how she will cope, as she
went to college for 2 years and lost a lot of time due to
hospitilisation. It took her a lot of effort to complete the
course, just hope she'll be ok at uni. My daughters are 18 and we
live near to Birmingham in the UK.

Look forward to hearing from you,

karen