Bethany is winning - Just

Skywalker · 13 Oct 2007 at 16:39

Well another test over and done with , it was the eye test this week to see if she has any tumours on the back of her eyes which could turn her blind and I am happy to say there fine

So far she has had the following

Heart - Clear - Tumours could cause an irratic heart beat causeing problems

Kidneys - Clear - Tumours could cause a polycystic kidney

Eyes - Clear - Tumours on the back of the eyes could cause her to go blind

Downsides

Brain - Tumours here have caused tuberous sclerosis complex which inturn she is suffering from

Epilepsy - Having upto 7 fits aday now and also fits in her sleep

Slow learning and development - Beth is 2 in 3 week time and still does not talk , walk or do anything
children this age normally do . She is currently under good knows how many specialists and and having lots of therapy

Skin - She has a skin test next week - We know she will fail this as there are already signs of what is called the buttery fly or ash tree which is where her skin comes up in perminate marks on her face that look like leaf marks in the shape of a butterfly on the front of her face , The only way to remove this is through lazer surgery

Shes still coping well and as happy as ever

SexyGreyFox · 13 Oct 2007 at 16:42

Excellent.
I remember your original post but others on here might start slagging unless you explain.
(Actually you have)

fail at the internets · 13 Oct 2007 at 16:43

Glad to see things are picking up, all the best mate.

dannyjo22 · 13 Oct 2007 at 16:44

Hard to know what to say really. I remember the heartbreaking thread with the picture of that total cutie in the car seat.

Yet again she looks totally happy.

Fingers crossed for the rest of her tests

SexyGreyFox · 13 Oct 2007 at 16:44

syke · 13 Oct 2007 at 16:46

Glad things are getting better mate

.

She still looks as happy as ever.

All the best

.

greeny_fastcar · 13 Oct 2007 at 16:48

Glad things are looking up mate.

Very happy picture of her anyways.

4p · 13 Oct 2007 at 16:50

Go on son!

Syph · 13 Oct 2007 at 16:51

From what I remember from your last post (and from what I can read of this one), Bethany has tubular sclerosis? My mum's friend has a daughter who has TS. It's taken her a long time, but she can now walk and talk and is a charming little girl. I hope Bethany does well and you can get the epilepsy under control.

Best of luck to you all.

(PS: Please forgive any ignorance in my post, if there is any!)

Bony Maloney · 13 Oct 2007 at 16:54

She's an angel, thoughts and prayers for you and your family.

G-MAN2004 · 13 Oct 2007 at 16:55

Hornchurch said:
Glad to see things are picking up, all the best mate.

Same. Good luck.

fozzy · 13 Oct 2007 at 16:58

I'm glad things are improving.

My 10 year old daughter agrees with me, she's beautiful.

Skywalker · 13 Oct 2007 at 17:18

Thanks for your comments guys .

Shes one of the most happiest kids I have ever known as some of the guys that have met her on here will agree with .

They cant seem to control the epilepsy at all , They say only 1 out of 3 people with TS can have the epilepsy controled with drugs and the other 2 there is nothing that can be done . With it aswell its fairly worrying to a degree as how bad the next fit will be as she cant tell you anything , the worst thing is when we are shopping and she has a fit , you just dont expect a child so young to suffer from it and onlookers are just mythed .

Mr_White · 13 Oct 2007 at 17:33

All the best to you and your family

Von Smallhausen · 13 Oct 2007 at 17:36

All that and she is smiling.

Bless her.

KNiVES · 13 Oct 2007 at 17:46

Keep your hopes up and be strong for her. You and your little girl are coping admirably.

Andr3w · 13 Oct 2007 at 17:47

she is very pretty, good to see that things are clear

knip · 13 Oct 2007 at 17:47

Skywalker, it might not work for kids with TS, but have you ever looked at controlling her epilepsy via her diet. The child I look after used to have 100 seizures a day, but only now has one every now and again (maybe less than once a week) due to him going on the ketogenic diet. Its a bit of a pain in the butt to do, but its worth it if it stops the seizures, shout if you want information on it.
Lots of love and kisses to Bethany

Skywalker · 13 Oct 2007 at 18:06

have heard of the diet but thats it nothing else

knip · 13 Oct 2007 at 18:08

Skywalker said:
have heard of the diet but thats it nothing else

I would be more than happy to put you in touch with the mum of the child I look after. It really did save his life, and I know of other children its helped too, let me know.
Best wishes.