poor lily-ann is having more seizures....she had a 10min one the other day where it was like she was paralised and only her eyes could move...they were vacant though!(posted a vid on FB)

and today she had 2 episodes of total floppiness, again unmoving with her eyes rolling into her head


so that's 3 in a week...yet the doctors say it's not enough to try her on meds

i hate seeing her like that...life is damn cruel


sorry, in a ranty hormonal mood tonight! lol

I just saw that video, that must be so scary :-(

How many does she need to have before they will try to help her with them?

x

Omg i really think your amazing for coping so well i would be a wreck. Bless her, i really hope you get some help for her soon x

not sure lisa, she can go months between having them so the dr says it's not a worry when she does have them...her eeg came back for negative for epilepsy so i don't think he's fully convinced it is seizures even though he's seen the vids and agreed it looks like it :?

poor little button, its so unfair that someone so small and innocent is having things like that going on, she just looks so helpless :-(

Aww Kenty hun, I wish the doctors would provide you all with more help and support. I saw your video on FB. It must be so scary and upsetting to see your little princess like that. You and Sam are amazing parents hun and lily-ann and lewis will be able to face whatever life throws at them with you and Sam behind them.xx

It's so unfair. Poor sweetheart, absolutely breaks my heart x

oh kenty thats so heartbreaking hugs to you and lily ann xx it is very very scary seeing them like that .. my uncle has epilepsy he has all the differnt kids complex partial and tonic clonics seizure he had them from birth and they are very frightning fro peopel to see.. lucky though he isnt awre that they are oocuring x i do hope they can give rher some meds soon to ease them x

It's awful Hun, I saw and commented on the video the other day. Is it pressure/ stress related, you know whiny day or tired, my friend has epilepsy and finds fits increase if she's stressed, tired and certain times like the hustle bustle of the build up to christmas, if she gets too hot (summer) etc generally make her more liable to fit and she is drug controlled. I'd keep pushing to try mess hub. It's gonna take a time for them to find a perfect med for her so the sooner they start sending you, oh and your beautiful children much love xxxx

now we know what it is it's not scary....but it's heart breaking, sometimes after she has them she screams and looks confused so i end up sitting rocking her while my heart shatters

she's such a happy lil thing though it's baffling!

kenty the scream afterwards is because her muscle relax and it comes out . my unlce always confused aftwards and fiddles with things.. he also gets an increase in hot weather and when he is unwell and excitement or when he is busy xx keep pushing for them to give her some relief xx i havnt seen the video i bet its sad x

she has complex partials so doesn't look as bad as some kinds of epileptic fits thankfully...although she goes so pale and still we actually have to check she's still breathing

when my uncl has the complex partial ones he clasps or runs his hands and turns his head to side and stares up blankly .. last from anything to 2 secs to a min or two xx she may grow out of it i hope x

Keep pushing for the docs to do something. I dont know how you can cope with that it was not very nice to watch.

I hope your ok

xx

don't think she will, complex partials are very common with her condition

.. well there are meds to help control them so i would push for them hun x does she have the the tonic clonic ones they can be very upsetting x

no, thankfully she's not got those ones...i think i really would freak watching her going through that!

don't know what to say , that must be so tough for you, she's a beautiful girly x

just remember there is always help and always push for it xxx hugs hun and sqquidgys for lily anne xx x i understand how you feel x its heartbreaking x

God Kenty..just watched this...my heart is in my throat. How awful and terrifying

kenty i think your so strong and brave, I have just sat here in tears watching that she is so beautiful hun she is like a little angel hugs to you all xxx

You are so brave i have no idea what its like for you to see her have these xx
poor lumpy sending huggles xxxxxxxxxx

hun have you tried contact a family, they a support group for parents with children with disabilities, i tried them when rich was diagnosed with adhd and autism and a few other things. they helped me understand the condition but also what i could do to help.

i know a little boy who is having seizures and the doctors have told his carers that they must video it before they can diagnose because nothing on ecg.

i'd keep a log/diary and go to the doc with a whole load of evidence, it may be apart of her condition but surely they have to treat the symptoms so that they not as severe.

i dont suppose i been much help,m also sending a hug, watching my mom have seizures was heartbreaking so kind of know how you feeling

I have just seen the vid too hun and I wish I could offer some sort of help.

I wish that the doctors would start looking after you guys more. You have been through hell the last few months and they still dont seem to be doing their jobs properly x

SuziandGracie wrote:

kenty i think your so strong and brave, I have just sat here in tears watching that she is so beautiful hun she is like a little angel hugs to you all xxx

haha she is that....until she smacks lewis in the head

she had another vacant floppy moment today so i dunno what the heck is going on with her