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Here are some suggested organisations that offer expert advice on SN.

neurologist

(41 Posts)
jbadgirl Sat 14-May-05 12:54:26

have an appointment to see him on monday, hope he can shed some light on ds?

keep you posted x

Davros Sat 14-May-05 17:31:48

Good luck, report back if you're feeling up to it.

coppertop Sat 14-May-05 17:40:59

Good luck for the appointment, JBG.

Blossomhill Sat 14-May-05 18:07:40

Good luck jbadgirl. Hope it all goes well

Merlot Sat 14-May-05 21:34:00

will be thinking of you

We've got an appointment on Monday too (with ds2's developmental consultant)

Pages Sat 14-May-05 21:42:07

Good luck, Merlot. I often think of your little chap, since he seems to have similar problems to my DS. What's a developmental consultant btw? Is it the same as a paediatrician? Also, meant to ask you what your DS's fine motor skills are like?

jbadgirl Sat 14-May-05 22:00:17

Good luck to you too merlot, we had our dev app. last week. and thanks to her chasing up we have this app booked.

Merlot Sun 15-May-05 14:06:19

Thanks guys

Yes, Pages - the developmental consultant is the developmental paed.

Ds2's fine motor skills are mixed - his BIBIC profile, showed patchy development once again.
He has an emerging pincer grip, but also still uses the tripod grip (index,middle finger and thumb). He also seems to push buttons well, post objects and lift puzzle pieces out. His main idiosyncracy is that he doesnt put anything in his mouth, so therefore does not self feed - although managed to get him to take a chocolate button from me and put it in his mouth a few days ago - HURRAY!!

Remind me about your little one Pages

coppertop Sun 15-May-05 21:19:34

Good luck to you too, Merlot.

Blossomhill Sun 15-May-05 21:26:30

Good luck merlot

Pages Sun 15-May-05 21:47:50

Merlot, my DS is 2.8 so a fair bit older than your DS but he also has developmental delay with no DX (although had epilepsy as a baby and was on epilim for a year, off it for nearly a year now and fit free). His fine motor skills are probably at a similar level to your DS though, although he does self feed. He is probably most delayed in this area, which is why I asked. (Although he is delayed in all areas his development is quite patchy).

Sorry to hijack your thread jbadgirl...

Fio2 Mon 16-May-05 08:01:47

we are seeing one in june, let me know how itgores

jbadgirl Mon 16-May-05 19:46:31

Thats ok pages!!! lol

Blossomhill Mon 16-May-05 19:50:43

jbadgirl - how did it go today?

Thomcat Mon 16-May-05 19:50:50

How did it go?

coppertop Mon 16-May-05 21:04:42

Any news, JBG and Merlot?

Merlot Tue 17-May-05 08:56:28

Mixed Feelings about ds2's appointment yesterday - will post more later - thanks for asking

how was it for you jbadgirl?

Davros Tue 17-May-05 09:13:10

Hoping to hear how you both got on..... if you feel up to it.

jbadgirl Wed 18-May-05 18:24:31

Sorry guys our app is on the 23rd but will let you all know next week x

Merlot Wed 18-May-05 20:24:58

Good Luck for then Jbadgirl

My experience was mixed:-

1. No genetic results yet (was expecting that to be the case)
2. Consultant made a few oblique comments about ds2 playing in an `unusual' manner - he took out lego bricks and placed them on a ledge in her room. I felt that she was flagging up AS stuff by saying that, which may or may not be the case - but my gut feeling is that ds2's probs are more likely to be genetic (with perhaps overtones of autistic like behaviour). For example ds2 has only one kidney and is delayed with his gross motor skills as well as communication issues. Just felt that she was playing a sort of `get out of jail card' because nothing else has materialised just yet.

I thought I'd `draw her out' by saying - `some of ds2's behaviour appears to be a little autistic-like and she said `yes, that is what I was thinking when I mentioned his unusual play'

As I said - if he turns out to be autistic, well he's autistic, I'm not trying to delude myself, its just that I feel that she is clutching at straws because no other sort of dx is emerging yet.

Anyhow, also had a bit of a stand off over something called `Team Around The Child' - which imho is a great scheme in place in Surrey, which gets all the professionals involved with your child around a table to discuss action plans etc..

Well, apparently, the consultant was `miffed' that ds2's SALT had arranged for ds2 to be included in the TATC scheme - he doesnt meet the criteria said consultant. What criteria, I said? Well, because he hasn't got a dx he hasn't got the same needs as say a child with Downs Syndrome. Excuse me, I thought, we are seeing exactly the same number of professionals as my friend does with her little boy who has DS. Well, said the consultant, parents of children with DS and the like (ie diagnosed!!) need more social support - where as apparently we (with undiagnosed kids)need medical support but no social support - BOLLOCKS!!! I couldn't believe what I was hearing!! She also said it was a question of funding - she made me feel like we were receiving something we were not entitled to and yet it wasn't as if we had referred ourselves! Rant Over.

Have calmed down a little since, because having spoken to someone who knows the TATC co-ordinator well, she said that they are actually looking for families to take part in the Scheme and that they wouldn't have accepted a child onto the scheme if they didn't meet the criteria. Also the Scheme is well funded which means there is no question of someone else not getting what they are entitled to!

heartinthecountry Wed 18-May-05 21:00:49

Merlot - at your consultant's reaction to TATC!! Can't believe how narrow minded that is. It sounds like a great scheme and also sounds totally like your ds should be on it. All this 'criteria' stuff really pisses me off.

Merlot Wed 18-May-05 21:17:34

I know, shocking isn't it HITC? Wait till you see the other thread I am composing about my GP -get ready with your shocked and angry icons - it is truly a jaw dropping tale...

Pages Wed 18-May-05 21:18:36

Merlot, the scheme you mention sounds exactly the same as a scheme here, which is a multi-disciplinary assessment involving all the different professionals, and my DS went to it last September, and he has no dx either apart from developmental delay. I also didn't find the play you described that strange - your DS is only little, who knows what he was attempting/imagining?

I think it is hard when a professional sees your child for what is really only a few minutes in the child's life and makes a judgement...I know they have a lot of experience but I think your instincts about your own child are just as valid if not more so. At least you have the positive experience of BIBIC to refer back to. (I've just booked for end June, btw).

Davros Wed 18-May-05 21:23:19

That consultant sounds like an utter arse! I agree with your suspicions about the trying to tempt out autistic behaviour. If he is, then he is, but its not a default option. The TATC sounds just like a multi-disciplinary assessment which is what all children without a dx should be getting, never mind those with a dx. Grrrr, makes my blood boil. Why is it that WE have to prove things to these people all the time when THEY should be telling us what they understand of our children from their vast (!) experience and training??????????????????????????

Merlot Wed 18-May-05 21:39:12

Oh great Pages - I hope (well I know actually ) that you'll find it worthwhile

Davros - You've hit the nail on the head about the Autistic stuff exactly - thanks for putting it so much more eloquently

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