18 month old daughters MRI results - a lot worse than we thought

z0mbi3 said:
First of all sorry that things were worse than you exptected, I remember reading your previous thread and hoping things would turn out ok.

If you haven't already, I recommend you read up on the tuberous sclerosis wiki. While there's no miracle cure it seems we're in a much better position to manage the illness then previous generations were.

I think you should consider getting people to sign up to CommunityTSC dc project. You'd definitley have my spare cycles.


http://en.wikipedia.org/wiki/Community_TSC
http://www.childhooddiseases.org/download.html
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follow the link above
curse my slowness.. :p Conanius
 
Cute child :)

Really sorry to hear that :(

Hope you and the OH get through this and you'll be by your daughters' side whether it's good or bad.

It's the last thing any parent would want, chin up fella . . . things will turn out for the better hopefully :)
 
I can't even begin to think what you're going through at the moment. My heart goes out to you.

I wish you all the best for the future and I hope the tests they're going to be doing bring some slightly better news.

:(
 
I just can not fathom what it must feel like to be you, my thoughts are with you, your family, and especially her.

I hope for the very best for all of you :)
 
Skywalker I realise you must have a tremendous amount of things going on in your head and in your life right now. The child I look after (who I have looked after since he was 2 and he is now 11) has epilepsy and other complications, but his seizures (of which he used to have up to 100 in a day) were reduced to one every couple of months (if that) due to the KETOGENIC DIET. Very little is known about this diet in the country and it isnt always practiced successfully, but the child I look afters life was saved by his parents who learnt about this diet and put the child I look after on it.

Sorry im not wording this very well and what im trying to say isnt coming out well but they were told all the usual "hes going to be a vegetable, hes never going to have a normal life" etc etc

He is 11 now and attends a mainstream school has a girlfriend and recently got back from a school camp where he was the only disabled child yet he did most if not all of the activities, he cant walk on his own or talk very easily but he has a really fulfilling life and enjoys life to the maximum.

All im trying to say is that if you want help with your beautiful daughters epilepsy then im more than happy to pass on contact details for people who can and will help you in anyway they can. Im sure life feels pretty black right now and you have every reason to be angry, your daughter will thrive as im sure she already was on your love, and you in turn will keep going due to the love she shows you.

Hate to sound cliche but there is light at the end of the tunnel, however hard it seems to be to see that right now, give it time, keep talking to your partner, and try not to listen too much to the negative things the specialists might say, they always give the worst case scenarios, which isnt always helpful.
With very best wishes, and I mean it about the offer of help
 
Justintime said:
Stay strong and don't let it get you down. Doctors can be a bit overzealous with their predictions. Mate of mine had some issues and was'nt expected to pass 5yrs old, had his 31st this Janurary. Mate of my Dad has an inoperable tumor and was given 1yr max, its now 6 yrs later. They don't know everything.
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it's true not giving false hope but take one day at a time all those things won't happen straight away and they may not even happen at all.

Don't do too much reading on the net either as it's usually the worse case scenarios. Try to find a support group, either in your area or on the WWW.

My son has a leg problem and it's still wait and see with the docs but he is still 100% FUN.



My prayers are for your wee one tonight.

Jas
 
Damn dude, i'm so so sorry to hear this :( but like others have said, she'll always be your little angel and she's such a cutie!

All the best to you & yours mate, i know tough times are ahead, but be strong and you'll get there.

You'll be in my thoughts & prayers.
 
gord said:
Anything i write would be inadequate. :( Sorry to hear that. Dont ever give up hope.
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What an absolute ***** life is sometimes. But what an absolute cracking little cutie you have their mate. Cracking blue eyes and cheerfull. What a fab photo.

Never contributed to any of these type threads before but I feel absolutely gutted for you. I dont have children so wont fully understand your pain, but I do wish you all the best in coping with your news.

Just keep her smiling.
 
Must be heart breaking to have news like that. However, I work in a special school and must say that the kids there are some of the lovliest you'd ever wish to meet. Great kids. :)

There's an amazing amount of things/places out there that will help her, if she needs it.
 
That's terrible news.

I actually know someone who's about 30 who suffers from the worst form of this, he's on anything between 13 and 19 pills a day (he gradually got that high), but he doesn't let it affect him. He's one of the nicest people I've ever met.
 
Words cannot express how much sorrow I feel for you - such a beautiful child too. My thoughts and prayers go to your daughter, you and your family.

There is hope yet.
 
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