Our second Ask our Community for December

Do you have any ideas or suggestions?

We wanted to share another Ask Our Community for December:

A community member wants suggestions or tips on giving extra oral hydrocortisone to their child with Addison’s (adrenal insufficiency) when they are sick.

When their son is ill, especially with a fever, he also tend to vomit. They are finding it difficult to get him to take extra hydrocortisone as it tastes horrible and he often needs something to wash it down.

If you have any ideas or suggestions, please send them to info@alextlc.org

 

Thank you to everyone who got involved in our Community Ask from earlier this month by providing suggestions and ideas:

A community member wants to know, what you are getting your children for Christmas? She has a 10 year old son, who has CCALD (Childhood Cerebral Adrenoleukodystrophy). He is the size of a 14 year old and she isn’t sure how good his vision is but has said his hearing is good. She ideally wants something fun for him.

Suggestions from the community:

–  Spotify (without the adverts)

–  Audio books/music

–  A projector with lights that go across the room and music you can connect your phone to some and play his favourite band

–  A box of 12 envelopes each month wrote on the front: inside being a special trip to somewhere i.e the zoo the aquarium etc all his favourite places 12 beautiful family trips – so he can hear the sounds of the animals and lots of places have earphones that tell you about everything

–  His friends and family could make videos of messages and songs etc and he could listen to them whenever he wanted

–  A fart machine (lots of different fart sounds that come out at random) which our son thought was hilarious in the early days

–  When our son left school his class mates put together a recording of them all telling him jokes which he enjoyed a lot too

–  Audio books (David Walliams was a particular favourite)

–  An electronic keyboard

–  Wireless headphones to listen to music (or books)

–  Local theatre to hear a brass band

–  A toniebox with characters (https://tonies.com/en-gb/tonieboxes/)

 

Alex - The Leukodystrophy Charity