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Long awaited neurology appointment tomorrow for probable epilepsy diagnosis-can anyone help me gather my thoughts please?

(16 Posts)
used2bthin Tue 30-Aug-11 20:38:27

So I don't just cry and come away forgetting to ask all the important stuff1

I have a log of DD's odd night time behaviour and a list of all the funny turns she has had.

I have a little bit of film footage on my camera which I will show him but am not sure I have ever actually caught anything.

DD has quite serious SLI which badly affectes her understanding an learning so obviously I want to know how this all ties in-we will be having an MRI so my guess is he will say wait and see though.

DD has just been found to have a chromosome deletion which may or may not be relevant.

DD has a genetic condition affecting her ability to deal with illness or stress on the body so I need to ask about epilepsy's affect on that.

Whetehr to medicate or not is going to be a huge issue so I hope he won't expect us to decide then and there.

Mostly I want to know prognosis long term but I bet he won't be able to answer that.

Anything else?

TheNinjaGooseIsOnAMission Tue 30-Aug-11 20:52:52

try to get all the questions you can think of onto paper tonight and take a pen so you can take notes and don't forget tissues you can always ask for another appointment so you've time to think google

will be thinking of you

used2bthin Tue 30-Aug-11 20:57:16

Thanks ninja will o. I have my paper next to my bed atm as I tend to scribble stuff down at night if dd is sleepwalking etc. So worried I will forget it!

Will defo check when we will see him again. I am so used to endocrine department who are brilliant at calling me back if I ring with any concerns, neurology epartemnt seem unreachable so I definatley want the best from the appointment. I so hope I come out with at least some answers and not just more unknowns.

zzzzz Wed 31-Aug-11 00:33:18

Thinking of you. They will give you all the answers they can. SLI and epilepsy are linked in many cases [the positive from this is that many children respond very well to medication and language can be boosted]. I hope they have a good plan.

ArthurPewty Wed 31-Aug-11 08:34:25

Message withdrawn at poster's request.

ArthurPewty Wed 31-Aug-11 08:35:40

Message withdrawn at poster's request.

1980Sport Wed 31-Aug-11 12:27:12

Thinking about you today x

TheNinjaGooseIsOnAMission Wed 31-Aug-11 19:47:08

how'd you get on used2?

used2bthin Wed 31-Aug-11 21:01:25

Yes Leonie she is a salt waster too, have you experience of it? She was diagnosed shortly after birth and the developmental/small head/possible epilepsy thing is unrelated although some of her funny turns may be related to blood sugar.

Thanks for all the well wishes.

The appointment was OK. He said he doesn't wannt to diagnose epilepsy at this stage as only one of the incidents I described was clear cut enough to convince him it definately was an epileptic event. So he said wait fior the MRI and see what it shows up, he did say that it is very possible that the SLI and epilepsy and head size are related as they tend to be things that go together but said he felt medication wouldnt necessarily be helpful and he didnt think the epilepsy would be causing the SLI more that it would go together.

I had been hoping sort of that there would be somehow a cure for the SLI through all this so made myself ask hom just so I was not keeping on with a vague hope and he said although tyhere are forms of epilepsy that affect speech and language he didn't think dd's would be that type due to the way her episodes have presented. Glad I asked though as best to be prepared. I do think I probably won't get any definates in terms of prognosis which is tough but I feel a bit calmed about it all,

TheNinjaGooseIsOnAMission Wed 31-Aug-11 21:45:57

sounds like it went ok used2, at least you've moved forward with a little more knowledge, are they going to see her again?

used2bthin Wed 31-Aug-11 21:51:01

Yes it is kind of what I expected although of course I sort of hoped for something more definate, wish he'd just talked to me on the phone when we got the eeg result but I guess he needed to see her.

We have the MRI in october and he said I can ring for results the next day?!

Then an appointment in three months when he will see if any more is going on and discuss medication again. The next appointment is for january! I think I just have to give up waiting for a definitive diagnosis for all this tbh.

ArthurPewty Wed 31-Aug-11 22:08:30

Message withdrawn at poster's request.

used2bthin Wed 31-Aug-11 22:22:41

Thanks and yes its been hard at times but manageble now mostly. btw I confuse 17 with 21 its because they do the OH 17 testing!

ArthurPewty Wed 31-Aug-11 22:41:27

Message withdrawn at poster's request.

growlybear Thu 01-Sep-11 15:26:15

Hi used2bthin glad the appointment kind of went ok.Everything seems to take ages dosen't it when all we want is answer or explanations as it can be so scary.We still haven't got much further with dd's epilepsy.As the consultant said there are no quick or easy answers to any of this.x

used2bthin Thu 01-Sep-11 18:10:12

Thanks growlybear yes I think we may have a long wait and I actually feel calm about it (today!) its better than the waiting for a diagnosis if I can just think thats how she is and not expect an answer. Hard though. The MRI even may not give many more answers.

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