Thursday, March 25, 2010

Guest Blog- Tarja- A day in the Family with Hypohidrotic Ectodermal Dysplasia (HED)

A day in the Family with Hypohidrotic Ectodermal Dysplasia (HED)

I am fortunate that my day starts at 7am, my children like to sleep in. 
The last night was relatively good, only three wakings which helped. Nathanael has many problems with painful stools because his intestines are scarred, this all contributes to frequent wakings at night. His belly can get quite sore and just passing wind is scary so he cries until it's done and falls asleep almost instantly.
Matthew doesn't wake as often anymore but he still comes wandering into our bed to warm up. 
Sebastian has worked out how to get comfy so he hardly ever comes anymore

See, my three boys can't sweat, so we keep them at a comfortable temperature of 25 degrees Celsius at home. 
Overnight though, as they slow down and fall asleep, the heat they generated all day during play and school just goes away. 
Like a stove, which goes out overnight, the fires within just die down and more often than not, they wake up because they are cold. 
No Goosebumps, no body hair, no real shiver means it would take a lot of exercise to get warm again. Not ideal in the middle of the night so a visit to mum and dad's cosy bed is just the ticket.
So, morning time, I get the lunches ready for School. 
No egg, nuts, oranges, tomato or sesame snaps for Matthew, don't want to use the epipen just yet (or ever).
Peel and cut the apple,Ectodermal Dysplasia gives the lucky few some teeth but they are not ideal to "cut" and "grind" with. The Incisors are pointy and the molars (if they get any) don't usually have a partner underneath so grinding food is a hassle. 
I remember way back, my apples used to look like Vlad had a go at them, neat little rows of holes all round :) very cute. Sebastian liked to suck the juice out of them via the holes he punced into the skin of the apple.
Matthew and Nathanael need their daily application of cream. Matthew has been taking tablets to controll his eczema and Nathanael gets the liquid version but some persistant spots remain and they need treating. 
There was a time Doctors would declare that they had never seen a case of eczema as bad as my boys'. 
How fortunate are we,that it is under control right now. 
Nathanael's just won't heal though. Even with the daily antihystamine and the steroid every other day he just can't leave it alone. 
His feet and the backs of his knees are red raw from yet another night of scratching. I have since found out that it is his intestinal pain which makes him scratch to try and get rid of it.

Breakfast, weet-bix and milk and oh my gosh, bus time for Sebastian. 
Hope it is not too hot already, he has a bit of a walk to get there. 
I'll pack his cooling vest just in case. Off he goes.

"Matthew, your transport is here." 
Matthew is Autistic so he has a slightly different way to school than his big brother. High functioning means that he can communicate and hold limited conversations but he is totally freaked out by the bus. Taxi to school and home, solved a whole lot of anguish for all of us.
And here I am, left with the twins. 
One with and the other without HED. 
The airconditioner has been on for the better half of the morning already and I think we will have to turn the other one on too if the heat keeps going up. 
We don't play outside very often, catch us on cool days or when it's dusk. 
We limit excursions to one or two shopping locations as the car heats up so bad inside the boys just hate getting back in and they overheat. 
All in all, we live life together to the max, we are not very social beings but we do like the odd visitor (have to be odd to understand us ;) ) We are, after all, a "normal" family.

This blog was written by Tarja.
for more information please check out the "I have HED" facebook page.
a has also written a childrens book about HED to help children to understand why HED suffers look different to other children and to help remove the stigma of HED

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