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Original poster

Please help me get through the weekend

30 replies

Verahaspurpletwuntypants · 12/08/2011 16:58

Dd2 (3) is seeing the pead (2nd app) on Monday.

She's had tests done, (bloods, ECG, MRI, urine,) to see whether anything genetic or physical is the cause of her deafness and lack of balance.

I phoned yesterday to check they had all the results back, (seems a bit pointless to me to go if the results were not back) didn't want to know the results, just wanted to check that they had them iykwim.
Anyway after 3 departments, I learnt that audiology had her file as they "had to do something" with them?

So now I'm half between well if there is something then they are on the ball doing something which is good. But also feeling that we are not going to like the results and there's something worse than we first thought.
Which is silly I know because I thought we were expecting the worst (inner ear being deformed).

But now I just feel a bit sick.

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TheNinjaGooseIsOnAMission · 12/08/2011 18:02

Brew vera, the waiting's awful isn't it. If your audiology is anything like ours they probably have the file because they have just got round to typing up the last clinic letter!

lisad123 · 12/08/2011 19:03

Don't panic it could be as simple as they have to pop notes/results in the file. Biscuit to go with teaSmile

coff33pot · 12/08/2011 19:16

I can say dont worry but I expect you will Smile But try not to too much as it they may just have her file to actually put the results in once they have been reviewed and signed off Smile

Original poster
Verahaspurpletwuntypants · 12/08/2011 20:05

thanks for Brew and Biscuit. Why does tryng not to think about something make you think about it more?
I think it's the waiting, as already had this appointment rearranged (them not me) and had to wait an extra month.

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Original poster
Verahaspurpletwuntypants · 13/08/2011 10:40

Just got a letter from audiology. They want to see us sooner. Appointment letter says "we have had further thoughts on dd2 hearing that we would like to discuss with you" written in pen at the bottom. Now I'm worried. Confused

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TheNinjaGooseIsOnAMission · 13/08/2011 12:30

more Brew and Wine for later. I guess you'll find out on monday, how long do you have to wait to see audiology, what's her hearing like, could just be thinking about changing hearing aids? Can you plan a day out for tomorrow to take your mind off things a little. Whatever happens she will still be your lovely little girl.

Original poster
Verahaspurpletwuntypants · 15/08/2011 07:27

Well it's Monday morning. not long to wait now.

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signandsmile · 15/08/2011 08:04

thinking of you...

Original poster
Verahaspurpletwuntypants · 15/08/2011 08:07

Thanks sign

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lisad123 · 15/08/2011 08:26

so are you phoning today or do yu have appointment today?
I hate wiating, its the worse thing ever :(

EllenJaneisnotmyname · 15/08/2011 08:31

Morning Vera. Hope it goes well this morning. Smile

Original poster
Verahaspurpletwuntypants · 15/08/2011 08:33

Have appointment with pead this morning for results.

And have to phone audiology coz one of her aids isn't working properly.

Gotta go get dds ready. I'll be back later.

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TheNinjaGooseIsOnAMission · 15/08/2011 11:05

hope all goes well vera

coff33pot · 15/08/2011 14:25

Fingers crossed all is ok for you :) x

Original poster
Verahaspurpletwuntypants · 15/08/2011 15:35

Well. We know what it's not. (mri was normal, as were blood tests, so inner ear not deformed) But not what it is. Iykwim. V

Very frustrating. More tests to be done. More Genetic from the bloods that have already been taken. Referral to assess for ASD. Referral for more in-depth hearing tests at a bigger hospital. And referral for more in-depth visual tests.

Well a lot of referrals. Let's hope they're quick.

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EllenJaneisnotmyname · 15/08/2011 16:09

That's about as clear as mud, then? Confused More waiting games but nothing nasty found, at least. More Brew ?

TheNinjaGooseIsOnAMission · 15/08/2011 16:29

definitely more Brew Smile Did you get her hearing aid fixed whilst there?

Original poster
Verahaspurpletwuntypants · 15/08/2011 17:06

Thanks for the Brew. :)

ERG (for eyes) is not gonna be nice. :( but need it done to rule out the one thing that I am dreading (the big U, that we're not talking about) which is linked to the balance. I thought we'd ruled that out with her last eye test. But I guess not.

Hearing aid fixed replacement whilst her pink one is fixed

and on top of it all my tax credits randomly got stopped. Angry so completely skint. :(

Doesn't rain but it pours. Think I need Wine

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TheNinjaGooseIsOnAMission · 15/08/2011 17:32

Wine instead then Smile dd3's had the vep/erg, it wasn't too bad.

Original poster
Verahaspurpletwuntypants · 15/08/2011 17:49

Vep/erg ninja? Was your dd3 co-operative? May I ask how old she was when it was done. Dd2 can't sit still and doesn't sedate very well.

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EllenJaneisnotmyname · 15/08/2011 17:58

Oh dear, Vera, didn't realise what the options were that we shan't mention . Wine on offer, it's just past 6.

Hopefully tax credits can be sorted out, have you re-applied for this year yet?

Original poster
Verahaspurpletwuntypants · 15/08/2011 18:17

Yeah, sorted out tax credits with an hour phone call to them. They tried to tell me that I hadn't told them my hours dropped to 15, but I knew I'd told them when I told them dd had DLA. Which I had! As they found the notes on my last phone call and I had clearly told them. Nightmare. Oh well, just have to hope it doesn't take them 3 months to sort it out.

I really don't want it to be usher but it is screaming at me. Pead phoned me after appointment and was asking loads of questions about her sight, and I can't 100% say that I cant see a problem.
I mean she can see but as for her peripheral and night vision I just don't know. I really don't know.

And now I've worked myself up about it all. And scared stiff.

DH is worried, but don't think he's realised I'm thinking u, not sure he's even aware of u.

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EllenJaneisnotmyname · 15/08/2011 18:41

My BSL signing tutor's DH had U, so my knowledge is scanty. He had tunnel vision, slowly, slowly deteriorating, and was in his late 50s. Early days, we're here for Wine and (((hugs)))

TheNinjaGooseIsOnAMission · 15/08/2011 21:37

dd3 was about 6 months old when it was done the first time, then again just before she turned 1, they managed to get it done despite all the wriggling and not looking where she was supposed to. No mention of sedation at all, don't think it's necessary to sedate for vep/erg both were done at the same time and she sat on my knee for it. Are they testing for ushers? There is a genetic testing thread somewhere that may be worth a read.

Original poster
Verahaspurpletwuntypants · 19/08/2011 14:03

Hi, just thought I'd let you know that I found out why audiology wanted to see us early.. To refer us for more testing for ANSD (auditory neuropathy spectrum disorder).

And has been referred to be assessed for ASD

Ps tax credits sorted too.

So all in all feeling a lot more positive today.

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