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Original poster

Neuro appt today, feeling stressed about it

211 replies

fanjoforthemammaries7850 · 24/09/2010 10:08

DD has an appointment with her two Neurology Professors today, just for a review.

They said on phone they have drawn a blank so I doubt anything bad will be said at the appointment but I feel absolutely sick about going.

I don't know if it's the fear they have missed something bad or the bad memories from the last appointment where we were waiting to hear she had something progressive.

Anyway I am all teary and need a kick up the bum! Sad

OP posts:
waitingforgodot · 24/09/2010 17:10

Sending you big hugs Fanjo.
Have a wee glass of wine and try to have some time for yourself tonight.

Original poster
fanjoforthemammaries7850 · 24/09/2010 17:14

we are going out for dinner actually,not that i feel hungry!

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TotalChaos · 24/09/2010 17:57

I'm sorry you are having such a dreadful time of it, and that the medics are swinging backwards and forwards from being reassuring to doom and gloom. I hope the next appointment brings good news.

auntevil · 24/09/2010 18:18

Big hugs Fanjo. Will the november appointment clear up any of the issues that the neuros seem to be unclear over? Can't think of anything very positive to say, sorry. Sad

Original poster
fanjoforthemammaries7850 · 24/09/2010 22:40

we have a genetics appt on 7th oct which is now a biggie. We both don't feel she has anything progressive,not sure how much mother's instinct counts but I just feel she hasn't. Thanks all.

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Original poster
fanjoforthemammaries7850 · 25/09/2010 09:34

am in bits today, so worried that DD can't draw any more, we used to be so proud of her speech, then she lost it, but was the best artist at nursery, if she loses that it will break our and her heart.

But I should probably stop posting, I noticed lots of people are posting support on other threads but only a few on this one, maybe people just don't know what to say, or maybe I am just being too needy eh. Sad

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Original poster
fanjoforthemammaries7850 · 25/09/2010 09:39

anyway, sorry, didn't mean to get all huffy, I shall seriously desist from posting until I feel a bit more "together" Blush Of course people can post where they want and have no obligation to post on my thread..sorry.

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badkitty · 25/09/2010 09:53

I'm sorry Fanjo - I guess I don't know what to say but my heart goes out to you, I know the uncertainty must be eating you up - I hope the genetics appointment gives you some answers and confirms your instincts that it is not something progressivexxx

Original poster
fanjoforthemammaries7850 · 25/09/2010 09:53

well, today I am not sure it isn't progressive, as she isn't able to draw again, hence me being a bit flaky and gutted..sorry Blush

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Original poster
fanjoforthemammaries7850 · 25/09/2010 09:54

but thanks for answering Smile

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Original poster
fanjoforthemammaries7850 · 25/09/2010 09:56

had thought she was just trying to hold pen properly, but neuro said she doubts that, so now facing worst fear that she is losing another skill.

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Original poster
fanjoforthemammaries7850 · 25/09/2010 09:56

anyway I am still going to be posting like a loon so am off for a cup of tea...thanks... Smile

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bigcar · 25/09/2010 10:19

oh fanjo that is a horrible position to be in. I can fully remember the total dread of waiting for some of dd3s appointments, especially the genetics ones Sad It's awful when they leave you so long between appointments but at least it sounds like they are trying to find an answer in the mean time, they just need to go on a course about offering some comfort to parents! I can recommend a slice of chocolate cake to go with that cup of tea Smile

Lougle · 25/09/2010 10:38

FanjoForTheMammaries, what is the reason for leaving you til December - is it so they can see progress/deterioration?

Original poster
fanjoforthemammaries7850 · 25/09/2010 10:43

It's because we have a genetics appt in October then an appointment in Glasgow, they want to get all the information from those appointments then will see us again.

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Original poster
fanjoforthemammaries7850 · 25/09/2010 10:44

They also said they will get to the bottom of it but it will take time as they don't want to overload DD with lots of invasive tests at her age...DD actually copes fine with tests, better than we do with waiting.

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Original poster
fanjoforthemammaries7850 · 25/09/2010 10:53

I also don't think 1 lot tests in 18 months is exactly excessive, that's all she has had.

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woolytree · 25/09/2010 11:27

Theres not a lot I can say to help or advise. :( I hate the waiting game and Im really sorry to hear about the drawing. I hope the next few months fly by and your DD gets some positive results.

Big Hugs! :)

mariagoretti · 25/09/2010 11:49

Hi fanjo, please don't stop posting till you feel more 'together'. The waiting does seem to be the worst bit for most people (well me anyway). On the whole spectrum of special needs the one unifying factor seems to be the dread ond worry of trying to figure out if we're imagining things, making varying plans for the future if it's scenario A or scenario B and trying to second-guess the professionals...

If not posting until we feel together was the rule we'd all be on AIBU & not here! And constantly trying to figure out if a dc has a nasty degenerative neuro thing, or 'just ordinary' SN / developmental stuff couldn't not do your head in. My guesss would be that there are an awful lot of lurkers on this thread hoping and praying things will be ok for you guys but feeling too tongue tied to know what to post in case they inadvertantly make you feel worse. In fact, that was me but ds's impulsivity is hereditary so I posted anyway!

Original poster
fanjoforthemammaries7850 · 25/09/2010 11:57

thanks. Nothing could make me feel worse.posts are appreciated. Was already super stressed as my mum is becoming forgetful, bloody brains,i hate them! Grin

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BobLoblaw · 25/09/2010 12:01

I'm so very sorry :( it sounds like an absolutely hideous situation. Do you have a community nurse or local consultant who could write to the neuros saying you're not happy to wait and feel dd would benefit from having the tests sooner rather than later? I don't know your back story but have they done all the genetics stuff they can? If so, they need to refer you on to someone who can do more.

Original poster
fanjoforthemammaries7850 · 25/09/2010 12:08

thanks,seeing geneticist on 7th october..

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BobLoblaw · 25/09/2010 12:11

From my experience (not genetics so possibly not relevant) you may need to be a stroppy demanding cow Grin

Original poster
fanjoforthemammaries7850 · 25/09/2010 12:16

am not good at that,better at being wet blanket with stuffing punched out of me!

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Suzyinwonderland · 25/09/2010 12:33

Hi Fanjo. Just finished catching up on your thread.

Sorry I didn't post sooner.

I'm really sorry to hear about the appointment not going well. Did they focus atall on her improving skills such as her social skills etc. You have to remember, if it baffles them and assuming they're using some of the greatest minds in the field, then they don't really have, at this stage any more of a clue than the 2 of you. In fact you have that 'instinct', which i'm a firm believer in. If it's something they haven't seen before and they're puzzled by it, there's no reason why your daughter couldn't very gradually improve, because as you say, she is in some aspects. I can understand how heart breaking it must be with the idea that she is losing her skills 1 at a time, but she is still gaining them, which is probably what is confusing all the neuros. There's still plenty of hope for your daughter and of course you. Don't forget that. :)