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Cant cope with this final blow

(20 Posts)
needmorecoffee Thu 30-Aug-07 16:29:02

DD's EEG does showa pattern that might indicate ealy lennox gastaut syndomre. Am devatstaed. Despite the brain damage and despite infantile spasms she has been intellectually normal. LGS always causes mental retardation.
We're off to hospital this evening to start injected steroids in an attempt to avert this.
I feel sick inside. Sick at what might lie ahead, sick that my baby might lose her personality and sick at the terrible side effects of this drug.
Life is just shitty

Mitchell81 Thu 30-Aug-07 16:31:24

I am so sorry, I hope that they are wrong. Sending you love and for you to know that others are thinking about you.

aloha Thu 30-Aug-07 16:33:15

I am so, so sorry. I just hope they are wrong. How old is your dd?

coppertop Thu 30-Aug-07 16:33:23

NMC

Wishing you all the best for the hospital visit. xx

dustystar Thu 30-Aug-07 16:34:13

So sorrysad Good luck at the hospital

magsi Thu 30-Aug-07 16:34:45

Blimey! I really hope for your dd that the early intervention can avert it. Keeping everything crossed for you and your dd. Good luck with the treatment and keep strong xxxxx

Peachy Thu 30-Aug-07 16:38:02

Oh no sad, i thought they said nothing anbormally abnormal?

Thinking of you XXX

berolina Thu 30-Aug-07 16:41:06

I'm so sorry. Thinking of you.

AttilaTheMeerkat Thu 30-Aug-07 17:08:05

needmorecoffee,

I am very sorry to read about your DD and you are in my thoughts and prayers for tonight.

Just incase you haven't heard of them I have put the following details of a support group up for you:-

Lennox-Gastaut Support Group, 9 South View, Burrough on the Hill, Melton Mowbray, LE14 2JJ, telephone 01664 454 305.

bullet123 Thu 30-Aug-07 19:11:50

Very sorry for you and your daughter if this turns out to be the case .

lourobert Thu 30-Aug-07 19:22:00

HI ,

My son has (or had) Is his last eeg showed no hyps.....LGS is now my next fear. Is it possible that with these steriods that they may be able to cease the LGS or help towards controlling it and it effects.

Thoughts are with you at this time XX

needmorecoffee Fri 31-Aug-07 07:32:14

Hi Louro. I've feared LGS for 3 years. DD' doc kept saying there was no chance because you just don't get LGS after 3 years seizure free. Usually the IS turns into LGS with no break.
They are slightly perplexed because she isn't having tonic seizures or absences. Nothing aprt from status/partial complexes at night, about 1 every 2 weeks.
Off to the hospital ina minute. Didn't sleep all night and now have stinking migraine with vomiting and aura and will have to sit on a vomit inducing bus for 45 mins.
Am feeling rather sorry for myself right now.

berolina Fri 31-Aug-07 07:34:40

Thinking of you still. Are there other things the pattern could be? Hope your brave little girl copes OK today.

anniebear Fri 31-Aug-07 07:47:31

I am so so sorry to hear this, My DD had IS, and I always knew the possibility of LGS

I am so sorry you are going through this

Dinosaur Fri 31-Aug-07 15:22:45

needmorecoffee - I'm so sorry sad

I hope that your migraine has at least lifted a little bit.

mummy2aaron Mon 03-Sep-07 07:02:15

Omg very sorry about this. Thinking of you. xx

BigBearistheBigBear Mon 03-Sep-07 15:45:00

So sorry. It's so terribly unfair.

needmorecoffee Mon 03-Sep-07 18:14:14

I just wish we knew. She's not having any seizures, just this weird pattern.

BigBearistheBigBear Mon 03-Sep-07 18:58:47

Could it mean that the docs suspicions are wrong? You say 'may indicate' but does that mean it could very well not indicate LGS? Thinking of you.

lourobert Mon 03-Sep-07 20:58:19

needmorecoffee- how is your daughter doing...???

Thinking of you. My son has been sf for 6 months and im looking forward and absolutly dreading, trying to wean meds in 6 months time, should he remain sf.

his last EEG showed no hyps but I dont take anything for granted.

Hope C is doing well X

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