What happens in a neuro appointment? Tempted to cancel again

[zen1]

DS (2.9) has an appointment with paed neurologist in a couple of weeks. His paed originally referred him as he still wasn't really walking (hypermobile) when she saw him in April. He had an appointment in June which I cancelled because DH and I have decided we don't want him to have any blood tests, MRIs etc. He has many ASD traits and I am certain in myself that that is the cause of his problems (currently going down the diagnostic route at the moment), as well as the hypermobility. He is now walking well and trying to run. I don't know what I'm asking really. If he sees the neuro, are we likely to be pressured to undergo tests?

I've never had a neuro pressure me to do tests. Mind you, I've had to fight like a madwoman for both of DD1's MRIs so possibly you are living in a better funded area than I am. But ime neurologists ask for tests if they are plotting surgery, which doesn't sound likely in your case. And they are very good at ruling out (or in) various obscure conditions because they see kids with those conditions all the time so they will maybe be able to confirm whether your child has anything "more" than ASD which might reduce the poking and prodding longer-term.

Fwiw the Neuros we've seen (6 or 7 I think) have mostly been straight-shooting no-nonsense types (which is good) but also a bit more endowed with the consultant's God Complex than usual (which is bad).

Thanks r3dh3d. Just getting worked up because his paed was muttering something about blood tests (which I declined) but also said he didn't have any features which suggested genetic conditions. Thanks for the God Complex warning though

well, you can discuss or even accept any referrals and say you want to think about them/talk to your dh/have tests done locally if poss; I have declined blood tests in the past for my ds and deferred mri too but still kept the contact open

Hi Zen1

I think you will find that as a result of the scientific advances of the last decade all the issues you have mentioned both ASD, and hypermobility have genetic issues, or candidate genes, and both will increasingly include brain scans or neuroimaging which has advanced considerably in recent years.

The researchers are seeking to identify the underlying causes of the various traits of ASD, for a new more precise clinical and genetic diagnosis. And a neurologist should be more in touch and informed with these recent advances.

Have a look at
Joint Hypermobility Syndrome
Ehlers-Danlos syndrome (EDS)
Marfan syndrome
Autism (ASD)

I declined MRI and blood tests for now. My ds is 2. Did have genetic blood test though. Will reconsider again in 6 months. But you don't have to do anything you don't feel is necessary at any given point in time.

Go to the appointment.

You will never forgive yourself if something is spotted later, which could have been spotted, and treated, earlier if he'd been seen now.

It's hard to get these appointments. They don't give them out like candy.

I would go to the appointment - there is just a chance it might reveal something important. My friend's DS was assumed to have ASC and was not given an MRI or genetic testing. He then developed a problem that required brain surgery. If he had had an MRI earlier, it would have shown up and the problem could have been dealt with earlier.

zen1 Obviously each Neurologist is different but in this day and age, you have to consent to any tests on your child. It could be good to attend and hear just what options are available. A Neurologist can also be helpful in getting you referred to another specialist who may be able to help.

I've seen a Neurologist about my boys many times. Certain tests were discussed, I agreed and they were done (MRI's, blood test, lumbar puncture, muscle biopsy).

After a while - with no definitive diagnosis, I declined further tests. I thought they'd been through enough and we'd pretty much run out of ideas of what else to test for anyway.

They can't do anything without your consent. Good luck.

Thanks for the replies everyone. It has given me something to think about. My latest thinking is that we will go to the appointment, but I am not interested in finding a cause of DS's problems, as highly unlikely they will be caused by something 'curable', so will decline tests. Think you are right Indigo that I just have to go to get an opinion or I wouldn't forgive myself. I am with you Leonie that it seems to be 'a load of trauma for no good reason'.

hypermobility can be linked to connective tissue problems and/or zinc deficiency (amongst many others no doubt), so you could ask about that

Ok, thanks nightcat, I will look into that one!

Leonie, I have always felt that the hypermobility and ASD symptoms were 2 separate issues, although I don't know where DS has got the hypermobility from as no one else in the family (apart from my grandad who used to be able to get his leg round his neck) seems to suffer with this. DS certainly doesn't seem bothered by his bendiness, except that when he walks his ankles bend in a bit, but he manages well without ankle supports. Good to know it hasn't affected you too much (though physios told me that although DS would probably be good at yoga etc, not to let him to too much excercise that would overstretch him).