Aaargh

[fanjoforthemammaries7850]

Neurologist's secretary called today when i was at work, and spoke to my mum (in her 70's, quite forgetful).

We have been waiting for DD's results for 2 months (MRI, metabolic tests, EEG, genetic testing).

The communication clinic referred us to the neurologist for tests originally. We saw a letter when in hospital saying that the results would determine whether we were seen again by the communication clinic (for ASD) or the neurologist (for metabolic illness etc).

My mum THINKS they said we would now be seen at the communication clinic. They said the neurologist has spoken to the ASD Professor and they would see us, but no date has been set yet.

So does this mean DD's tests were clear and they now think she has ASD with late regression?

I would think so except one of the tests was for Rett. Is that treated by neurologists or as a form of autism? Does anyone know??

I am puzzled.

Surely if there were bad results we wouldn't still be waiting for a date to be set?

it's all confusing. I don't think they'd tell ME much over the phone though.

I was feeling positive about it until I suddenly thought, if tests were clear, wouldn't they just tell us over the phone.

anyway sorry, I know noone can probably help really.

It's just so stressful, I don't think these Drs appreciate what it's like waiting for MONTHS to hear if your child has a progressive degenerative brain condition or not.

I don't think anyone can interpret the chicken bones but in my limited experience, it's often the case that no real cause is found for developmental delay and that the few that are known such as Retts are done to rule them out.

yes. i don't think it was the case here though. She had quite a significant late regression and we were led to believe they WOULD find something..still, I suppose they can be wrong.

Will you find out tomorrow what they actually wanted to say when your mum intercepted the call?

no, I think they just said they have passed it back to the communication clinic who will give us an appointment in due course. I think we have to forget about it until then, i suppose.

Well, I might, I almost prefer not knowing, tbh, it's a scary call to make.

Fanjo
Ring them
Put your mind at ease. Write out a list of what you want to ask them and call them first thing. You have waited this long. You need to be sure what they are saying. Keep us posted

I am not sure they will tell us anything though. Will try to psych myself up to do it, can't promise.

phew, DH says he will call them, he is less wimpy than me!!

thats good. You ok? You still feeling a bit in limbo?

I don't know how i feel. I feel like it could be that the tests were clear. Don't know how I feel about that even as I had the small hope that it was a treatable metabolic condition and they could fix her. It will definitely be an ASD diagnosis at the very least, and that is difficult enough. So not sure how to feel really.

Trying to focus on the fact I love DD and accept her for who she is, however she is, really, have come to terms with any issues she has ages ago. Would find it hard to accept if she was to deteriorate but I'm sure I would eventually.

Keep us posted-I hope everything is ok

thanks, actually I'm not sure tests were clear, it's just stirred all the worries up again. hopefully we will have some answers soon, no point speculating. {smile] Going to bed, we have all been ill here, was at hospital with DD on Sat, then I had it yesterday and now DH is getting sick.

oh dear. Get well soon to you all

Definitely call back. They should also send you a cc copy of the results. I've always received copies with a letter from the neuro explaining the results (the results are impossible to decipher unless you are an expert on this).

Also i wouldn't equate the fact you haven't been told with the fact that its bad news. If anything i've always found this to be the other way round. If there is anything wrong you are normally told very quickly, if its longer then the results have been more positive. I'll be keeping my fingers crossed and hope you all feel better soon.

I can't believe they let us hang on like this.

DH says he will call tomorrow, he is sick today, I think he is scared to call too!

Definitely call them (easy to say I know). I have no experience of this situation but my guess is that if there was something factual or definite to say (esp. if it is bad news), they would want to be back in touch to say ti.

I'm sure we will..eventually!

You'd think they'd understand we need to hear something, I suppose they are just too busy to call us and discuss it so we have to wait for an appointment with the rest of the world.

THanks for listening to my moaning!!

how is dh today?

he is at work although he is still not feeling good. He said he will call tomorrow when he feels better..has admitted he is a bit scared though..we are wussy!!