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Paediatric Neurologists

(20 Posts)
salondon Sat 04-May-13 22:27:54

As part of the investigations, did you see any paediatric nuerologists? If yes, what tests did they do? This is mainly in the global development delay context.

We have seen Diane Smyth and she has done all the genetic tests, MRI and urine tests. I wonder if i should look into the matter from a medical standpoint any further.

salondon Sat 04-May-13 22:29:07

I should have added that some blood tests were done on NHS at 1y2m old and MRI etc were done at 2y6m old.

zzzzz Sat 04-May-13 22:34:02

Investigations into which condition?
Dd (epilepsy) sees a neurologist
Ds (language disorder) sees general peaditrician

BeeMom Sun 05-May-13 03:58:51

To me (and this is only my opinion) if there has been nothing "remarkable" found in the MRI or blood testing, unless you have reason to think there is seizure activity, there is not a huge benefit to a neurological consult.

With that said, if you feel there might be underlying brain wave abnormalities, (since ASD and epilepsy as co-morbids are not unheard of) it might be worthwhile.

I know - clear as mud. Sorry I could not be more helpful.

Badvoc Sun 05-May-13 20:24:33

Salondon...how old is your dc now?
I am not sure I would get a neuro consult if the MRI was normal, but perhaps a developmental paed?
Is your dc under a paed now?
My ds sees a general paed with interest in respitory disorders (he is asthmatic)
He was discharged but this winter has been so bad he is back on his inhalers sad
What is the main area of concern?

salondon Sun 05-May-13 21:56:02

Badvoc, now my daughter 3y8m. So the MRI was done over a year ago. I just want to be sure her MRI was read and interpreted correctly. And it's 'just' autism we are dealing with.

Yes she is under a dev paed in NHS.

No one has talked about dyspraxia. Her autism hasn't been looked at under the global developmental delay lens at all.

Doesn't matter too much because all the interventions I am doing is what we can do at the moment. However, I was hoping that someone in NHS would open that MRI e-copy. I don't think they want to do anything more than state that it's autism. Their aim was simply to allow me access to services(which is fine, however, what if there are other problems too?)

Badvoc Sun 05-May-13 22:07:51

I see.
That can be a problem with a dx Ime, it can mean other co morbid issues are either dismissed or not picked up at all.
Your dd is very young to be doing rrt IMHO, but I am not an expert by any means.
Is the body brushing helping her sensory issues?
I know I had to fight against the urge to do "everything" Once I realised that ds needed help and that I was his his best (and sadly only) advocate. we did rrt, ait and now TH.
It's worked out really well for us so far, but ds was 7 when we started and that has meant we have been able to explain the therapies to him and he has been very compliant - with only a few moans! smile

salondon Sun 05-May-13 22:18:30

Yes Badvoc, this time I asked to be seen by an OT.

As for RRT, I agree when we started at 1.5 she wasnt ready. Our OT also said to us that if we try and integrate them its like taking a blind man's stick away(and that is why we liked her so much). We did do it for a year and then stopped. Recently she has tolerated the brushing and joint compression. So I am doing that on arms and legs 2-3 times a day.

Yes, the GDD aspect worries me. Today in the park an older girl gave my daughter her ball back. I could see that my daughter was giving her eye contact. But nothing came out of it. An adult would probably have said something to her, like thank you for the ball. But at that moment, my daughter inability to speak came in the way of making a 'friend'. No one know yet, why she doesn't speak - i.e. is it's because she can't physically speak or is it because she won't speak(sensory/aloofness).

As a mother, what I cannot get an answer for is that, at this stage, is it worth spending and time or energy into this? Or should I just keep modelling the signs and say the words, in the hope, that one day she will speak. Or should I continue the OT on the assumption there is definitely a physical aspect. Financially, we can't do OT just now(planning to have some input from OT every few months and do the rest ourselves), while we do ABA.

Does it make sense?

Badvoc Sun 05-May-13 22:24:08

Yes it does.
We have spent ££££ so I get that.
It's a case of prioritising isn't it?
So difficult though.
So hard to know what to do.
sad
Has anyone mentioned selective mutism?
Or does she not speak at all to anyone?
Great about the eye contact though! smile
(I believe in focusing on the positive!)

salondon Sun 05-May-13 22:32:16

She doesn't speak at all Badvoc. Has been babbling for the last 2+yrs.

Yes the eye contact was encouraging.

Badvoc Sun 05-May-13 22:34:59

Gosh, that must be tough.
Do you use pecs?
How is ABA going?

salondon Sun 05-May-13 22:40:53

No she didn't take to pecs either. ABA is going well. We only started 3 months ago. Very early days. She is more compliant now. Better eye contact and some signs.

zzzzz Sun 05-May-13 22:59:39

How does she respond to music?
Can she make any meaningful sounds?

salondon Sun 05-May-13 23:07:09

She makes sounds - baba, mmuma, papa, ah. However they are random. You can hear them at all times of the day.

She likes some songs. But doesn't respond to them with any sounds. The other day my tutor tried jolly phonics and said she'd like to try again.

zzzzz Sun 05-May-13 23:17:32

My ds is slightly different but he is severely language disordered (8 yrs)

At three he got a lot out of music therapy. A good music therapist creates a beautiful environment for the non verbal child. I believe it helped him to understand the flow and rhythm of conversation and that it can be a pleasure. I also used music to supplement communication. Every activity had a tune/noise. This made our lives immeasurably easier.

Badvoc Mon 06-May-13 07:34:11

Ooooh yes.
Good idea zzzz!
Jolly phonics might work well as it has actions for sounds.
Does she watch tv at all?
If so I would recommend Alphablocks on cbeebies or you can now get them on DVD from amazon.
Fun stories, silly sings and teaching sounds.

salondon Tue 07-May-13 09:35:39

No she doesnt watch TV. She listens to some songs on the iPad

Badvoc Tue 07-May-13 10:33:53

I think they at do an Audo cd too?

babiki Tue 07-May-13 11:52:00

We went to GOSH. They did MRI, nerve conduction studies and lumbal puncture. Nothing found.

salondon Tue 07-May-13 12:09:10

babiki, if I remember correctly, your child had a diagnosis of "Global Developmental delay" as well? Is that what triggered the MRI? (In our case that is why we were referred for an MRI. Ours was done in Portland Hospital.

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