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Original poster

dd is 10weeks old having seizures, having tests to see whats causing them, but

154 replies

trace2 · 22/08/2007 17:20

how do i cope? been given diazepan to put up her bum when shes in them longer than 5 mins, waiting to see lots of specialist, what do i ask my minds all over the place at the moment! as any ones little had these since being so young? please i need to know i can talk to some one

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Original poster
trace2 · 07/09/2007 08:21

oh i forgot i got hold of some of her notes the first eeg said this(infrequent sharp transients over temporal region) so first one was abnoramal

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Phoenix · 07/09/2007 09:13

Ah i thought you meant a feeding tube when u said yesterday.

Phoenix · 07/09/2007 09:15

Just keep on at them, it sounds like plenty of them know it's seizures. for the MRI.

sputnik · 07/09/2007 18:53

Good news about the MIR Trace, and that Chloe has been siezure free - that's great

Original poster
trace2 · 08/09/2007 09:10

chloe had ph probe waiting for resluts, but pead dont think its that, we brought her home yesterday, but befor we did we asked loads of questions about, why they now thinking its refluz after fits, he says no he did ph probe to rule it out, then we asked if it was not fits why did you give mecication to bring her out and will they harm her! he sais no and if she still as one after 5 mins 20 mins for cluster they still will give her meds to bring her out, so i said so you still think its fits he says we dont know! it could be a movement disorder, then i asked about the vitb she is stopping on sunday taking it, so if she starts fitting again within a week of stopping they will restart it. we also have an ededed letter to carry with us if she starts fitting while we are out for paramedics to give her meds.

so can anyone make any light of all this?? also i asked chloe is 13 weeks on monday and can not hold her head up at all

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Original poster
trace2 · 13/09/2007 08:09

hi all chloe once again is back in , we took her yesterday she was all screwed up to right , not fitting so was told to take her back to a&e, when got there the nurse thought she was fitting, but it was way she was holding her head to side, anyway she was like this for 5 hours, but thay are now says she as reflux only am sorry but i sean to know its not reflux, i know she as some but surly that can not be only reflux. we went in asking questions yesterday saying if its reflux why do you keep her in to watch her for 24 hours and more?

i just dont know what to do now its my baby there messing with i just want an proper answer. where do we go from here its killing us not knowing

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Phoenix · 13/09/2007 09:46

So did the ph test come back saying it is reflux?

You've probably already gone to the hospital now so i'll see you later.

saggarmakersbottomknocker · 13/09/2007 09:52

trace2 - sorry to hear that you're back in.

If you're unhappy ask your GP to refer you for a second opinion. You are entitled to do that. It'll take time though I expect on the NHS and understandably you'll not want to wait. Can you afford private? Did she not get the MRI? The paed thought fits didn't he? Is he willing to push for another neuro's opinion?

spinspinsugar · 13/09/2007 20:14

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Original poster
trace2 · 14/09/2007 06:01

hi yes shes having this morning some time, she had ph probe for reflux and yes she as some but was told yesterday its not strong eought to cause these episodes, and they truly have no idea whats causing her to spasam, they have said time will tell, but we have to be ready for her doing some thing else, be prepared they said

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spinspinsugar · 14/09/2007 07:30

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Original poster
trace2 · 14/09/2007 19:53

hi chloe had mir today she didnt have milk from 2 30 am, and she went with out crying until after she came round at 10 30 am she normaly only goes 2 hours, we not get resluts yet but she as had a bad reaction to plaster on her cheat and face where they put her to sleep.

spinspinsugar ive not name changed but you did reply to my other thread.

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spinspinsugar · 14/09/2007 21:06

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Original poster
trace2 · 15/09/2007 19:31

hi yes she is out at moment dont know for how long and no idea when we get results either! what was your other name?

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Original poster
trace2 · 15/09/2007 19:31

hi yes she is out at moment dont know for how long and no idea when we get results either! what was your other name? sorry yes i know who you are now

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spinspinsugar · 15/09/2007 19:42

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daisyandbabybootoo · 17/09/2007 18:15

Hi Trace...just checking in with you to see how Chloe is. I hadn't noticed your name in active convos for a bit.

Thinking about you all and hoping Chloe is doing better and that you get some answers soon.

Are things easier now DS is back at school?

hugs

Jxx

Original poster
trace2 · 02/10/2007 08:25

hi all dd is back in again she had a big fit or what ever it is on sunday night, at 2 am i just knew there was some thing up with her even though she sleeps through the night now. i could feel her sort of junping and went to put dummy in a relised her head was at a funny angel( when she as these her head goes to right or left in spasam) turned light on and thought on no not again(sad) placed her on our bed to sit it out but she decided to do some thing else, she was a little sick, then eyes rolled jon picked her up as her breathing was shallow i phoned 999 and while i was on phone she went limp and unconcouce the her breathing chagde again she could ardley breath, so dh was watching incase she stopped breathing to do crp until they came, it seamed like we was waiting a life time for them, but then dd just came round then was sick and the men walked in thank god, so she now back in they still have no idea whats wrong.

sorry its long i just need to ofload on her as dh is so struggling with this and am finding am on my own with it at the monment.

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lottiejenkins · 02/10/2007 08:38

Sending you lots of love xxxxxxxxxxxxxxxxxx

spinspinsugar · 02/10/2007 09:57

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Original poster
trace2 · 02/10/2007 19:55

chloe home again, she only stops in now 24 hours if no more episodes while in. we have another chat with pead he says putting jigsaw together a little more.
he says shes got a def movement disorder but dont know which and what causes it, and that is not life threaterning, but then went on to say what she now doing is life threatering, again told us to be ready and confident at doing cpr when needed, as he thinks thats what we need also told us not to let anyone have her unless they can do cpr confendley we r so worried

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spinspinsugar · 02/10/2007 20:11

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dizzy34 · 03/10/2007 00:23

Hi

Have you seen a consultant paed neuro yet? You must insist on a referral to one as its the only way you will get answers. Video one of her epidsodes to show to the paed neuro.

Original poster
trace2 · 03/10/2007 10:02

spinspinsugar yes the mir is clear, but he says her or one of her problems is nuro, but no idea whats making her unconcious and altering her breathing! he says her reflux is not bad eoungh to cause the problems (wish it were it would be easier to treat) we are going to t\ake it in turns to watch her as some times it happens in her sleep.
i think he may have an idea whats wrong but dont want to scare us if its not what hes thinking.

dizzy yes shes has sean a pead once we go back in 9 days he is the one who says shes not fitting, we did start taping her episode on sunday where at first she was just posturing to left side( which nuro sean her do this) but i put camara down to phone ward, but then dh shouted to phone 999 as she went unconcious so not got that on video.

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pindy · 16/10/2007 07:16

How are things now?