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View Full Version : What a night and day



mainecoon lover
11-08-2009, 06:16 PM
Beth did not settle well last night and was still wide awake at 12pm which is not her. She was unsettled for most of the night and then at 4am she had a massive seizure, we administered her rescue meds which she seems to live on at the moment and then she went straight into another, we can now do nothing but hope. Just got the phone to get ambulance and she thankfully came out of it. She has taken all day to get back to her normal self. I am starting to worry now as they are getting worse and her new drug is not helping. She has stopped eating lately and her weight is falling off, she also wants to be in bad at 5pm and sleeps right through till 7am. We have an emergency appointment on monday to see her consultant thankfully.
I then had a meeting with social worker to sort out what's in her best interest, some of it is so stupid like if she can be strapped in her wheelchair and if she can use cot sides :nono:.
I then had an appointment to have ear candling as still suffering with my ears but i sat at the clinic for 45 minutes and the girl did not turn up. When i got home there was a message for me saying i would have to pay for not going :unsure:. It turns out they told me the wrong clinic :nono:. I told them to phone the Camborne clinic and they will verify i was there so have to go again tomorrow but i will not be paying for today's. So roll on bed time.

Tinkfan
11-08-2009, 06:31 PM
:hug2: I am so sorry for you and for Beth, When a child is ill it just tears you up. How long has she been on her new meds? Have you ever thought about taking her to see someone in the States? The Cleveland clinic comes to mind.:yes:

Disneybumble
11-08-2009, 06:33 PM
:hug2:Oh hun.I am so sorry about Beth. You must have be frantic.When did you request consultant appt as could it be this week. Have nothing but admiration for you Michelle. These last 24 hours have been far to streessful for you.:hug2:

mainecoon lover
11-08-2009, 06:51 PM
Thank you both. We can not get an appointment before as the Proff is on holiday, they are always on holiday when you need them most. She has been on the new drug for about 3 months and this is classic due to her epilepsy. Drugs are aimed at specific parts of the brain and Beth has varied focal seizures which means most parts of her brain due to her brain damage. This makes it very hard to control them and a new drug works for a few months and then gives up but sadly they are the worst they have ever been now.
We have thought about the states but sadly there is some difference in what USA use for drugs and what we allow and also vice versa, so out of the question.

foreverducky
11-08-2009, 06:59 PM
Definitely a very worrisome time! :hug2:

Mari
11-08-2009, 07:04 PM
:hug2:

Oh my god Michelle... what a rough night and day

Beth is in my prayers

Britchick
11-08-2009, 07:23 PM
:hug2: I'm sorry Michelle, i really don't know how you stay so strong.

mumof2
11-08-2009, 08:16 PM
oh Michelle, that's so tough for you all :hug2::hug2:

Deb
11-08-2009, 08:25 PM
Oh Michelle...what a blooming awful time you're having. Nothing much I can say except I'm thinking of you and sending you and Beth hugs :hug2:

Mandy
11-08-2009, 09:04 PM
Oh Michelle! You have had a rough day, I hope you get Beth sorted our soon. :hug2::hug2:

Taja
11-08-2009, 09:48 PM
:hug2:

:pdust: for Beth. And a bit for Mum and Dad, too!

Hope you're able to get some rest. While I didn't deal with a child's needs, I had many years caring for my father--and he rarely slept at night! :eek: It's so difficult to be positive and cheerful when you're exhausted, isn't it? And even more difficult when it's your child, I'm sure.

Hope Beth improves and they're able to figure out how to control her seizures better.

Isafari
11-08-2009, 10:30 PM
:fingers: for an improvement with Beth. You are so strong Michelle, I really admire how you cope at times :hug2:

kazzaqld
11-08-2009, 11:30 PM
:pixiedust: that things will get better soon!

I really admire your strength in dealing with all of Beth's challenges. :yes:

uscwest
12-08-2009, 10:53 AM
Michelle, so sorry to hear about all this. I hope you can get things squared away soon. Best to Beth. :hug2:

mainecoon lover
12-08-2009, 12:28 PM
Thanks all. We got a better nights sleep last night apart from one of the cats being sick :unsure: but i just got dh to deal with it :yes:. Beth seems happier this morning and the doctors are looking at food supplements for her as she is not eating much. She has gone to respite so having a nice break. Dh is taking me out to dinner although he does not know yet.

mumof2
12-08-2009, 02:01 PM
Thanks all. We got a better nights sleep last night apart from one of the cats being sick :unsure: but i just got dh to deal with it :yes:. Beth seems happier this morning and the doctors are looking at food supplements for her as she is not eating much. She has gone to respite so having a nice break. Dh is taking me out to dinner although he does not know yet.

oh that's good Michelle, you seem a bit happier today too. :hug2:

Do you know why Beth's not eating? I hope they can help her, poor love. Good idea about you and your DH going out tonight - you deserve it :thumbsup:

piglet
12-08-2009, 02:23 PM
Lots of :hug2::hug2::hug2: and also :pixiedust::pixiedust::pixiedust: to Beth, hope things calm down soon for you both.

Kate
12-08-2009, 06:58 PM
:hug2: for you Michelle, im glad to hear Beth has picked up today - you make sure you have a starter, main and a huuuuge pudding tonight, you need it i reckon!

Debbie2
12-08-2009, 07:09 PM
Only just read this Michelle, pleased you got a better nights sleep and enjoy your respite break.

What is it with the health service - everyone is on holiday that I want to speak to as well!

Hope you get things sorted and Beth's health improves. DS has been put on diet supplements, they are full of calories so should help her weight x

SleepinCatz
12-08-2009, 07:10 PM
Much love to you and your family. you are truly one of the storngest people I know Michelle. God bless you and yours...

Claire
12-08-2009, 07:16 PM
So sorry things are tough right now Michelle. Sending :hug1: and :pdust: for you all in the hope things will turn a corner soon.

Mari
12-08-2009, 09:01 PM
I glad Beth is better Michelle

Did you enjoy dinner?

mainecoon lover
12-08-2009, 09:24 PM
Thankyou all :). I had Hopi ear treatment and I must say my ears do feel better. I am having them done again next week, it was a lovely feeling. We had a nice meal out, I had Thai fish cakes. I did raid the Ben and Jerrys when I got home.
I think her eating is down to medication. She has been put on zonigram wich can cause anorexia and is being taken off pregabalin which increases appetite. She always had a really poor appetite until 2 years ago when she was put on pregabalin. She has a tube in her stomach so we can get food in liquid form into her but I like her to eat normally as she can get stomach discomfort and l also think eating is very sociable plus she was enjoying her food. The dietician is looking at a liquid supplement for her.

mumof2
12-08-2009, 09:42 PM
She has been put on zonigram wich can cause anorexia and is being taken off pregabalin which increases appetite.

OMG - when you consider how ill people can be with this eating disorder......for it to be a side effect of a drug is quite shocking, and what a dreadful shame when she was actually enjoying her food and the social aspect of it.

Just more hugs and wishes that things get better for you all :hug2::hug2:



:pixiedust::pixiedust: