hey hypoparathyroid dosnt necessaryly have to happen ,he is at very young age
yet anyways.Have they checked for antibodies against parathyroid gland to see if
he is developing it as there is no need to worry until there is a chance he will
get it and the same with addisons has he had antibodie tests done for these and
if not you should enquire why this is as this will give you a good idea if you
should be more worried bloods not being done.if his antibodies as yet have come
back negetive no need to worry as even when positive take a little while for it
to develop and especially develop to a critical stage.i wouldnt worry but i
would ask my doc some questions
hope this helps
aoife


--- In apeced@yahoogroups.com, Dede Leydorf <dleydorf@...> wrote:
>
> I have had APECED since I was 9. I am now 43. I have hypoparathyroidism,
Addisons, and Hoshimotos. Generally speaking, when I have had a good endo doctor
who checks blood levels every 6 months, and who is available should anything
come up in between, it has been okay. But, I always had to push a bit to get the
care I needed. Also, just like the good advice below, it is good to encourage
your child to talk to you if he feels anything odd or just not well. My mother
did that (she is a doctor) and she also educated me about my disease to empower
me to speak with doctors on my own should something happen when she was not
around. I also wore an emergecy bracelet.
>  
> All the best,
> Dede
>
> --- En date de : Mar 17.3.09, Kandace <kan070182@...> a écrit :
>
> De: Kandace <kan070182@...>
> Objet: [apeced] Re: Endocrine signs and symptoms
> À: apeced@yahoogroups.com
> Date: Mardi 17 Mars 2009, 18h52
>
>
>
>
>
>
> I know medical professionals state that the hypoparathyroidism usually comes
before the Addison's, but not always true. I am 26 now. I had problems with
yeast, nail problems, enamel, etc. at about age 2. I was diagnosed with Addisons
at age 15. I wasn't diagnosed with hypoparathyroidism until age 23 or 24. I
remember when I was a kid...dealing with all of the weird things happening. My
parents always encouraged me to tell them when I didn't "feel right". This was
before much was known about Addisons, etc. I would do the same to your son,
explain to him what pins and needles are and what it feels like....if he feels
the symptoms in his hands or feet that he should tell you. I think as with all
people with APECED...you become very tuned in to your body....what it needs,
when you need to rest, when something doesnt feel right, etc. I think your son
over time will develop the same senses. I hope this helps.
>
> --- In apeced@yahoogroups. com, "rubiose" <rubiose@ > wrote:
> >
> > Hi All - I hope this email finds everyone well. I was interested in getting
some advice. My son jospeh is 2 1/2 years old. He gets candidiasis; had a
chronic rash, and has nail dystrophy and confirmed to have APECED through a
genetic test. He does not yet have hypoparathyroidism or low cortisol but I am
concerned it may happen and when it does how will I know??? He acts like a
typical 2 year old yet our last labs were 6 months ago and I am concerned that
maybe we should get his labs taken again just to see if there is something
developing, ie low calcium etc. Before he would get some severe symptom like a
siezure what should I be on the look out for? What are the early signs and
syptoms for hypoparathyproidism and as well as failure of the adrenal gland?
Also once hypoparathyroidism or adrenal gland failure is confirmed, is
hospitalization necessary to get levels stabilized or what is required?
> > I get so nervous that I will miss a sign or symptom early enough. It seems
that endocrine failures in APECED patients often begin at Joseph's age. Any
advice would be so appreciated. Thank you so much.
> >
>