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Just booked a GP appointment as think dd had a fit last night. Am I being silly?

27 replies

used2bthin · 22/08/2011 09:32

I've had threads on here about it but dd is being investigated atm due to a few funny turns then an eeg indicated epilepsy so we are waiting for a neurology appointment in two weeks then an MRI in october as she also has microcephaly and SLI. She also has a genetic condition and has a lovely consultant who cares for her with that so I spoke to her about some more funny turns recently and she said let her know if there are more or things get worse. So I've called but she's not there-her coleague who is less helpful usually is calling me back but I have also made a GP appointment as she has some spots but also I know it is pointless probably as she is being investigated anyway but I just want her looked at I feel so worried adn am a bit upset with myself that I didn't do more last night.

So basically DD had a bad afternoon yday. We wanted to go for a walk, she just wouldn't leave the house then whined a lot and seemed generally out of sorts. We finally diod get the walk and she had fun initially but it was longer than we realised and she got back exhausted and took ages to settle. She fell out of bed twice which seems to be a pattern and then at midnight ish i woke because she was in the doorway of my bedroom, she said mummy then I heard a thud and she was lying in the hallway, her eyse were a bit open(she often sleeps with her eyes open a little as does her dad) and her left arm was twiching. i couldn't get a response from her for a few minutes then she seemed to come to a bit but didn't get up and was too heavy to lift. i then managed to get her to stand up and I took her to the tolet but she had just wet her nappy-she had been dry for four nights so I was planning on not putting a nappy on last night as she is fairly reliable normally. She had wanted to wear one though.

should i have got her seen last night? is it pointless anyway? i know i should have filmed her but was too panicked even though the camera is now kept upstairs at night for that reason.

OP posts:
growlybear · 23/08/2011 18:26

Good new re:-getting blood first time and passing hearing tests.I am also still learning about seizures etc-it is so so vast a subject-i keep googling and then get even more confused.DD had anouther epic one this afternoon so she is tired out and so am.Just hate watching it'so worrying.

used2bthin · 26/08/2011 07:58

Oh sorry to hear that growleybear, how frightening for you and yes it does seem to be a neverending subject to learn about. It is exhausting all of this isn't it just makes me not up to doing much else!

bigbluebus I took a call from the geneticist at work yesterday (then came back in the office and managed not to talk to anyone till I felt more stable!) I asked about where the deletion is and it is the bottom not the top of chromosome four so different place to WolfHirshorn syndrome (or I could have got that the wrong way round). And no recognisable syndrome but one other person on the data base has the same deletion, inherited from a healthy unaffected parent and the child has significant delays so it could be relevant. She said that as genetics is fairly new to some of this stuff she would like to see first what mine and XPs blood samples show then possibly put DD on the database in case more cases are found. DD has always liked to be different lol! Unfortunately we can't know much about prognosis yet as its only one child-the child also doesn't have epilepsy or microcephaly so not necessarily the same symptoms but could be significant all the same.

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