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Reply | Forward Message #513 of 593 |

I hope that you are all having a happy and healthy spring (autumn for our friends down under). Some time ago I wrote that Julia was going to have an ERG and promised to report back. The test went well and everything looked normal with no signs of retinitis.
I asked Julia's ophthalmologist if he thought retinitis pigmentosa is a symptom of APS I and he does. He says that he's looked at reports going back to the 1960's that described it along with hypoparathyroidism and Addison's disease.
That's all for now.
Jennifer (mother of Julia, age 4)
Jennifer Orange
Torys LLP


From: apeced@yahoogroups.com
To: apeced@yahoogroups.com
Sent: Wed May 27 14:00:51 2009
Subject: Re : [apeced] Re: Endocrine signs and symptoms

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.
> >
>

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Wed May 27, 2009 8:22 pm

bandorangej
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I hope that you are all having a happy and healthy spring (autumn for our friends down under). Some time ago I wrote that Julia was going to have an ERG and...
Orange, Jennifer
bandorangej
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May 27, 2009
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