Thrifty Gifty - Organised for Christmas and all ocassions 2009- Santas Challenges

cdsmiler

3_cheeky_princesses - oh I forgot about your daughter!! Are the fits still happening regularly?! Have you been given any indication on what it MIGHT be or if/when you'll have any further tests or results?? Give her a big cuddle from all of us!!

Clare x

mary-op

Hello all :j
Thanks all of you for your kind thoughts. It's so appreciated.
Least we both had reasonable nights sleep last night apart from me coughing and dry throat like bottom of parrots cage :eek: OH got a cold (seems after endoscopies you can be prone to colds and infection) He likes to share things.............generous to a fault.........but I could do without this. Was going to had flu jab but don't think I can if I've got a cold............never had one before !
Made a few cards this morning........not much else. Took me all my time to sort my paper out.............do seem to have a lot of small offcuts that I keep hanging on to and don't use.
Oh well.............soc.worker arriving at 4pm for meeting about the lad weve got so best get on.

3_cheeky_princesses

cdsmiler wrote: »

3_cheeky_princesses - oh I forgot about your daughter!! Are the fits still happening regularly?! Have you been given any indication on what it MIGHT be or if/when you'll have any further tests or results?? Give her a big cuddle from all of us!!

Clare x

Thanks Clare

We dont know what they are. She has done it since she was few months old. I know it sounds bad but at the time we were told it was reflux. As she has got older i thought it was a quirky thing she did or maybe connected to Autism as we have a 6yr old with Aspergers but that has all been ruled out.
We only got it checked out in Septmeber when a family friend said it looks like a fit. I am niave and no nothing about Epilepsy but i thought there was only 1 type of fit when the whole body shakes and jerks and you froth at the mouth. The hospital said there is 40 plus differnet types of epilepsys and fits!
It sounds really strange but she gets into a funny position like on all fours. Cross one leg over the other ankle at a funny position then these spasms run up the trunk of her body from her abdomen. Her arms are out ridgid. she stares into space and looks vacant. Plus she sweats a lot mostly her hair /head (she soaks her top and whoever she is sitiing on plus her hair os soaked too) and goes really red in the face. Sometimes she dribbles too and her face grimaces like in pain.

We have been into our local hospital with her a few times whilst they observe and do tests. They thought it could be a rare form of Epilepsy connected to sleep but they another doctor wasnt sure so we have been reffered to Great Ormond street on London who have speciaaists there. We have had a MRI done and a CG scan but havent had the resuts for them as we have to get them from Great Ormond street on 17th dec.

She has these fits if that is what they are several times a day ( usually 5 - 6 times but we have recorded as many as 18 times in 24 hours) Sometimes it only lasts a minute or so but anything up to 15 - 20 minutes at a time. She has always done it to go to sleep - she has never ever gone to sleep normally always doing this - plus she will do it at other times when playing or having a story etc

Another Doctor thought she may be doing it for comfort but i cant see it as her body is doing so much work it goes rigid and these spasms go thru her. She sweats so much and her face looks in pain so i cant see that its comfort.

Anyone seen anything like this before please let me know. Its worrying and it looks awful for her but she is growing as she should and has easily met all her milestones and is not behind with anything so that is good.

Sorry for such a long post! And its not even christmas related.

mum2one

3CHEEKYPRINCESSES- hope they get it sorted, shes under the best care at Great Ormand Street, fingers crossed, guess in one way the good thing is if shes reaching all her milestones,
The excess sweating, that could be unrelated, theres a condition called hyper-hydrylos (not sure on spelling), its where some one sweats for england, I'm like your daughter, mine starts at my hair and face, even in Winter I'm sweating cobs, so stupid I can't go out in jumpers, have to wear a t-shirt + jacket, then if theres a cold wind, it gets nippy.... might be worth asking them about it.
xx

mary-op

3cheekyprincesses - I do feel for you............I have epilepsy myself, so does one of my sons but his is very mild and more like a sort of 'mind lapse' for few seconds then he's back to normal. Mine are normally during my sleep -well, more like just prior to waking - but with medication they're more or less under control. Had them since I was 11.
Our bank manager (in the days when you knew who your bank manager was) had a son who had really violent fits. There are so many different kinds its a minefield. Have you thought of ringing the Epilepsy Association ? They wouldn't be able to diagnose but might be able to help with coping. It must be really hard for you. I wish you luck and hope Great Ormond Street can sort it out. It's the best place for her to be.
Bless you x

itsybitsygoth

I have got the last of my gift buying done and everything is wrapped and stashed away. Got to pick up some stuff to take to my parents- wine and food to help them out. Only cooking for 5 this year. I'm determined to do the majority despite the fact we're going to my parents to give my mum a break though I think she'll be trying to help just to get away from my nan for a bit!

3_cheeky_princesses

mum2one wrote: »

3CHEEKYPRINCESSES- hope they get it sorted, shes under the best care at Great Ormand Street, fingers crossed, guess in one way the good thing is if shes reaching all her milestones,
The excess sweating, that could be unrelated, theres a condition called hyper-hydrylos (not sure on spelling), its where some one sweats for england, I'm like your daughter, mine starts at my hair and face, even in Winter I'm sweating cobs, so stupid I can't go out in jumpers, have to wear a t-shirt + jacket, then if theres a cold wind, it gets nippy.... might be worth asking them about it.
xx

Thank you Mum2One X She only sweats when she is having the spasms / fits hence why i assumed they are related but will ask the Dr next time we see him. Again we thought it was because of the summer but like yourself she is even doing it in this weather when its cold and she is cold to touch!

mary-op wrote: »

3cheekyprincesses - I do feel for you............I have epilepsy myself, so does one of my sons but his is very mild and more like a sort of 'mind lapse' for few seconds then he's back to normal. Mine are normally during my sleep -well, more like just prior to waking - but with medication they're more or less under control. Had them since I was 11.
Our bank manager (in the days when you knew who your bank manager was) had a son who had really violent fits. There are so many different kinds its a minefield. Have you thought of ringing the Epilepsy Association ? They wouldn't be able to diagnose but might be able to help with coping. It must be really hard for you. I wish you luck and hope Great Ormond Street can sort it out. It's the best place for her to be.
Bless you x

Thank you Mary XX We are lucky as she is a really cheeky little girl and is so beautiful (i know i am biased ). I just hope they can sort it out asap for her own sake. It doesnt look nice and it cant be nice for her. I have phoned the Epilepsy Society and they were very helpful but they werent sure what kind of Epiliepsy it is if it is one so could not send us specific info but did send some general ones. I am sure they will be able to help more when i get a definate diagnosis of what is exactly wrong and if it is epileipsy. I hope your DH is feeling better today. Hopefully his antibiotic will kick in soon for him. Thanks again X

mary-op

3cheekyprincesses - when you do find out what it is, and if it epilepsy then they are very good to talk to......always good to have a sort of 'help line' of some sort.
OH's stopped taking his antibiotics................they gave him the 'trots' like there's no tomorrow -read the 'side effects leaflet and it was mentioned as a nasty one -so I rang emergency number and doctor said stop taking them straight away. Least he's not coughing blood anymore and had a lie down this afternoon, feels not too bad he says. Nothings ever straight forward is it ?
He'll see how he feels tomorrow -he's so fed up going to the doctors all the time.........they'll be naming a door after him at this rate....................lol :rotfl:

mum2one

mary-op wrote: »

3cheekyprincesses - when you do find out what it is, and if it epilepsy then they are very good to talk to......always good to have a sort of 'help line' of some sort.
OH's stopped taking his antibiotics................they gave him the 'trots' like there's no tomorrow -read the 'side effects leaflet and it was mentioned as a nasty one -so I rang emergency number and doctor said stop taking them straight away. Least he's not coughing blood anymore and had a lie down this afternoon, feels not too bad he says. Nothings ever straight forward is it ?
He'll see how he feels tomorrow -he's so fed up going to the doctors all the time.........they'll be naming a door after him at this rate....................lol :rotfl:

Oh no, thats the trouble with anti-biotics, they can have that side effect, hopefully once their out of his system it will stop the trots..... is it toilet roll in the fridge for emergencies....
Without sounding cheeky, if he has the trots again, it may be more gentler for him to use toilet wipes, (softer).
Glad he's had a rest this afternoon, you need to look after yourself as well.
xx

mary-op

Hello all :j
Thankfully OH no longer has 'trots'.............lol (honest -most of our morning chats seem to be about toilet stuff.............lol) He's not going back to gp for any more antibiotics (I think he should be he's stubborn on that) and seems to be ok without them, plus he's not taking as many painkillers.
Still waiting for appt. to come from hospital. I'd have thought if it was important enough for them to phone and tell us he'd have appt. this week or next, at least we'd have had something by now. Can't see it being this week and now.
Oh well, we can but wait......................:rolleyes:

Got some more cards done for craftygranny's fund raising............run out of envelopes and plastic things to put them in. Gale force winds again so didn't go out as planned...........tomorrow I thought. Now OH says it'll be worse tomorrow:eek:

Oh well, plenty of stuff to do.............might make a start on some little felt decorations to put on a thread across the dresser.................found template for tree and star.............think I can make up a heart shape ok.

Grandsons Michael McIntyre dvd came this morning so once thats wrapped up he's sorted.:T
Oh c**p...............forgot there's still two gift bags upstairs with stuff in that need wrapping...........where is my brain today