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Here are some suggested organisations that offer expert advice on special needs.

Original poster

Update - this doesn't sound good, does it.

167 replies

fanjoforthemammaries7850 · 20/05/2010 12:17

Had a phone call today from consultant's secretary. Straight away I could tell it wasn't great, she had her "bad news" voice on..

Background - DD (3.7) had major regression of speech at 2.10, has always had issues with muscle tone, balance, motor skills.

So she had MRI and genetic testing and EEG/brain stem tests in March as they suspected metabolic illness/Landau Kleffner/atypical Rett syndrome (although she presents with ASD).

Anyway the secretary said both the neurology Dr and the autism professor want to meet us TOGETHER next tuesday.

I asked if I should bring DD, and said if it was something upsetting I didn't want her there..she said "that is what I am wondering, i am trying to ask the professor".

She also said "they have lots of information".

I asked if we could find anything out before Tuesday as we are basically worried sick and she said she would get the Professor to call me tomorrow "to lay the foundations".

It doesn't sound good, does it.

Am a mess.

Would be better if, when we were at the hospital, DH hadn't helpfully pointed out the secret PS the professor had written to the neurologist saying they wanted to test for Rett as well, obviously they didn't want to worry us, and he blithely showed me.

OP posts:
TheArsenicCupCake · 20/05/2010 12:27

Didn't want you to go unanswered and I an sure that someone far more knowledgable than me will come along.

I can however make a good cuppa and hand hold if needed.

Original poster
fanjoforthemammaries7850 · 20/05/2010 12:28

Thanks, I think i will need a lot of that!

OP posts:
debs40 · 20/05/2010 12:34

I think they have quite wrongly left you in a state of terrible anxiety. I understand they need to speak to you face to face but this sounds intolerable for you. Could you ring back and say you really need to talk to someone just to confirm whether this is bad news asap because you can't sit here all weekend in an awful state of flux? If the Professor is going to ring, then try and get them to fix a time to make it less unbearable.

It sounds like what they have to say is better said face to face because it may be complicated and you may have questions and they need to put time aside to do this. I couldn't say whether that means it is bad news but I do think keeping you hanging on in the dark is bad'bedside manners'.

I knew a clinical health psychologist who trained doctors and he said that they often really have no idea of the impact of their words on the people they deal with and that although this was getting better as training was improving, it was often best to say directly to practitioners - you are making me very stressed, could you tell me x,y,or z?

Sorry, don't know if that helps but I really feel for you xxx

Original poster
fanjoforthemammaries7850 · 20/05/2010 12:35

I tried to ask the secretary and from what I could tell the Professor is not there until tomorrow. I told the secretary I was really worried and I could tell SHE felt for me and was doing her best too, but wasn't allowed to tell me stuff.

OP posts:
Original poster
fanjoforthemammaries7850 · 20/05/2010 12:36

am sick as well , which is not helping.

OP posts:
TheArsenicCupCake · 20/05/2010 12:37

I hate it when they leave you over a weekend worrying.. I know that it can't be helped .. But it doesn't help with the stress.

Could you call them back and ask for a basic outline of what themeeting will cover.. So you can at least get your questions ready?

Original poster
fanjoforthemammaries7850 · 20/05/2010 12:38

well, i think they are trying to arrange that outline but it won't be until tomorrow when the Professor is available.

OP posts:
debs40 · 20/05/2010 12:39

Fanjo....maybe ring back if you feel able and ask her to pencil in a time for a call if she can?

Original poster
fanjoforthemammaries7850 · 20/05/2010 12:40

I think the secretary is trying desperately to do that but isn't getting very far.

She sounded so sad for us though which made me feel even worse! Maybe she just understands the stress

I think I had my head in the sand and thought it would all be clear, I have been silly, I should have been able to rell from DD and her regression, that something is wrong in her brain.

OP posts:
TheArsenicCupCake · 20/05/2010 12:44

Sorry posted that a bit late..

It won't help a lot... But I'll pass on some hand holding advice from my mum..( my sister had dandy walker syndrome)..
Whatever they say... Try to put the dx to the side for a few moments a day and enjoy your baby ( baby meaning at all ages lol).. They are the same child you knew before the label came to them.

Doesn't help a lot when your really worried.. I know..

Original poster
fanjoforthemammaries7850 · 20/05/2010 12:45

Thanks. She is a sweetheart.

OP posts:
debs40 · 20/05/2010 12:47

Take things one step at a time.

The first step is the phone call. Don't read anything into the secretary's voice. It may be bad news but she may well justbe thinking that the stress of waiting is quite unfair. She may well hate her job and think the Professor's a prat for dealing with things this way. She may just have one of those sad, 'oh dear' type of voices.

You will know more when you have spoken to the Professor and it may be that she won't be able to confirm the call until tomorrow. That leaves you with getting through today.

I won't say try not to think about it as that is impossible. But please, don't start blaming yourself for anything. This will be a horrible day for you but keep posting.

Original poster
fanjoforthemammaries7850 · 20/05/2010 12:48

Thanks. My auntie is coming round later, which will help, and my mum is coming in tomorrow.

WIll have to try to forget about it until tomorrow.

It's just been a horrible build up, I thought it couldn't get any worse than the day of the MRI but i was wrong.

OP posts:
TheArsenicCupCake · 20/05/2010 12:54

I very much agree with debs..

Your not going to get it out of your mind.. But post away .. We have lots of virtual tea and tissues when needed.

And i can try and make you smile a little about thrhuge excitement that ds2 has with his now ordered clothes in daily zip lock bags

step by step and try and breate inbetween

Original poster
fanjoforthemammaries7850 · 20/05/2010 12:55

DD is currently drawing fantastic pictures, which is a bit reassuring I suppose!!

OP posts:
TheArsenicCupCake · 20/05/2010 12:59

I love dc's drawings..

what I did with my lots art was I took photos of them doing it and scanned the drawings etc and had a photo book up made up for each of them.. Tis tres cute

debs40 · 20/05/2010 13:03

Aresenic...you are setting the bar way too high for the rest of us with that! What a lovely idea!!

coppertop · 20/05/2010 13:03

I don't have any advice but couldn't read and not post. Fingers crossed for you that you can get some answers before the weekend. xx

TheArsenicCupCake · 20/05/2010 13:06

Debs... It has to be better than trying to find a "home" for all the art dc's can produce!

Original poster
fanjoforthemammaries7850 · 20/05/2010 13:06

that is impressive, I tend to stick them in a folder or send them up to MIL

OP posts:
debs40 · 20/05/2010 13:08

They are often great turned into cards for people as it looks like the child has made it specially for the recipient when actually it's been lying around on the top of the fridge for 6 months ......bad mummy!!

Now you see why I don't post on the main boards

TheArsenicCupCake · 20/05/2010 13:11

I have to get on with some work now ( lunch over... Boooo)

I'll pop back later, just remember you can do it duffy moon. ( you may need to googlethat phrase). X

debs40 · 20/05/2010 13:13

I remember it! Now you have made me feel guilty about getting back to work too!

Original poster
fanjoforthemammaries7850 · 20/05/2010 13:17

I have to do it, that's what I hate about all this, you just have to take the punches of life on the chin constantly.

OP posts:
BriocheDoree · 20/05/2010 13:17

Lots of hugs, FFTM. Spend a nice weekend with your little girl. Do fun stuff, try and relax. If nothing else, sounds like you are getting some answers next week.
Big virtual cuppa and slice of cake as I think you need it!
brio
xx