Bastard Night seizures AGAIN

[caitlinnjacksmummy]

Hey all, Jack taking night seizures again, as well as 1 every night coming outta bath, can b mild or worse, just depends, still not drinking, and I take it he is bk t takin night seizures, as u know he had big one sun morning 4.26am which lasted an hour and 10 minutes for no apparent "reason" then got kept in hospital until 4pm and never had ine sun night but had one at 4.50 am this morning , I am knackered, doesn't help that I was also stripping my living room til 12 am this morning as going t b decorated and can't really have sleep, as doing housework as gttng community nurse out at 3.30pm to talk bout respite FOR Jack, thought bout cancelling til another day as have a lot to do today and plus I will have picked up dd, 6 from school by then and she has bn a little bugger of late, , no longer my little angel and don't want her acting up in front of woman , think a lot of her behaviour is to do with attention as Jack is ill, she cannot get her head around the fact that mummy spends more time with Jack than her, she actually told my neighbour out the bk last week that "mummy cares more about Jack now than me", was sooo embarassed, , little so n so, but good job my neighbours ad I get on well and no my circumstances with Jack etc, so hard isn't it?!

I know, he has appointment with paed tomorro....so hopefully, yeah just need to spend more time with Caitlin, but is impossible mosta the time, I remember u telling me bout yr dd running away on msn messenger, sorry bout that , we try our damndest and even then not enough, Jack just put on lamotrigine 2mg about 4 weeks ago nearly on alternate days for 2 weeks as he is still on nitrazepam, 4ml morn n night nd epilim 4ml morn n night, now he is on lamotrigine evry day, just once a day, and it was working until few days ago, although he was still yaking seizure every night after a bath, we have bn told that the seizures will never go away and wil always b difficult t control, so... but due to be put on 5mg lamotrigine, if it wrks then he will b weaned off the epilim...feel like I am constantly running uphill and getting nowhere near the top, sick of it, and him not drinking yet, how is Celyn? She drinking yet? Am so PISSED off

Sorry to hear it's so shit CJ. Is there a keyworker scheme (or Scottish equivalent) in your area? You need someone on your side to help you get some respite.

Hey had a community nurse in today, coming back in 2 weeks, was really helpful, gonna get respite and put in touch wi carers grp
for dd, 6 , was really pleased with her, telling me all sorts of info, and that SALT will help me put with tips on gettn Jack t feed and special cups etc

Riven a appreciate all yr nice comments, wish we lived close.... hoping we get control soon...can't stand this, everytime he gets a bit better I get my hopes up and BANG back to square 1.....

Hi caitlinn, so sorry to hear it's still v difficult. Lamotrigine was what made the difference with ds2 but we were increasing it even slower than riven's schedule, so it took a couple of months to make any difference. However he's on 20mg twice a day now (weighs about 15kg) and has been seizure free for 6 weeks, hooray!

Sympathise with you trying to deal with dd as well, ds1 was terrible when ds2 was a baby and very ill for ages, and I spent most of the time feeling guilty about it. They play together really well most of the time now though.

Glad to hear the community nurse was helpful. Hope the appt with the paed goes well today and you get all your respite you need.

Thanks mummypig, yeah it is hard, usn't it? Jack is ill today, terrible, unsure if a cold or hayfever his nose is running, v lethargic wee bit of a cough n had temp a little last night, but I have had really bad hayfever last night and during night, so has my dd, I am praying it is hayfever n not a cold as he does NOT take colds well, last time went into chest infection and took 2 antibiotics t sort it and was very ill, like he doesn't have enough to deal with

Sorry mummypig, great news for ds2!! Can't even begin t imagine wat it feels like t b seizure free for 6 weeks with Jack!!!! Would b amazing...am so pissed off, fed up, u name it, n now wi this hayfever or cold or watever it is as we all know can come MORE seizures wen they r ill...so not fair

Community nurse sounds great! Glad SALT going to help too. They can be brilliant on feeding and drinking stuff.

Thanks for your congrats CJM, I think we've been very lucky. I've been able to relax so much more in the past month or so and ds2 is really back to his old self. Hope the community nurse and SALT start to make things easier for you.

Maybe you can work towards finding someone to look after Jack a bit for you, just so you can spend a bit more time with Caitlin. When ds2 was eventually in a day nursery I used it to have a bit of time with ds1 and we both really appreciated it. Also in our area there are specialist babysitters for sn children (one of my friends is a babysitter for several families who have a child with autism) so it might be worth looking out for. I know how hard it can be to find someone, though, when your child has additional needs. I've only just worked out who I can trust to look after ds2 when I go to antenatal yoga classes - and I am 33 weeks now so won't be going for very long!

p.s. I misread your name for ages, thought your name was Caitlinn with a double N. Apologies.