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Epilepsy, Dyslexia And Tinted Glasses


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#1 Steph

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Posted 06 October 2009 - 04:32 PM

Caleb saw the paed neurologist yesterday. She gave him a clinical (dunno what that means- as opposed to medical?) dx of epilepsy and offered meds, but I said I wanted an EEG first to support her dx. She is doing a dx but warned it may not be conclusive evidence to support the dx but what we (his nan and I) told her, with the autism and the fact that I have siezures was enough to convince her.

So anyway, OT last week said Caleb has dyslexia, but they don't test for it until he is 8 yrs old. Caleb wrote his name on the chalkboard mirror-image backwards repeatedly, not with one or two letters wrong but all of it perfectly backwards. So between that and the fact that these tinted glasses help with stimming (ramming into walls, falling over, etc), I've asked the optrician to refer him to the opthomotrist for the testing involved in getting these glasses. Anyone have them, whats the process to get them and are they available on the NHS or will we have to go private? Thanks.

#2 Mozzy

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Posted 06 October 2009 - 05:45 PM

Gosh an epilepsy dx with only one meeting!! I would question this. The meds have side effects (well most of them do) and things like an MRI should be done to look for scaring that might be the cause because if the scar is in the right place surgery might be an option.

What meds did they offer out of interest?

Dyslexia is no biggy, he might grow out of it in the sense he learns to cope more. A young dx can be so useful. Although I didnt think an OT was qualified to dx this, my OT isnt and when I was diagnosed I was referred to someone else as an OT couldn't do it. You must have a very good OT.

As for coloured glasses, I have them, my colour is green :) Its a private thing, the NHS will not pay for the testing or the lenses but you might get vouchers towards the frames IF he also needs glasses anyway. Because I need glasses anyway I got money from the NHS towards the precription lenses and frames but had to pay for the colouring of the lenses and the testing. The testing was a good couple of 100 quid for complete and full testing in a range of things and the colouring for the lenses was nearly another 100 I think if I can remember right.

Good luck with it all.

#3 Steph

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Posted 06 October 2009 - 06:12 PM

We had a vid of Caleb having an 'episode' that helped with the dx I think. She mentioned a drug that starts with 'F' but I can't remember what it was. I said no to medication until the EEG was done, she said generally if they are focal siezures they won't automatically issue medication, but because he was wetting himself she was concerned about his textile defensiveness as the vid showed him being very upset about being wet, she also mentioned bullying.

OT haven't dx'd dyslexia, apparently the school does that but not until he's 8 yrs old, OT just said as a statement of fact 'When he's about 8 he'll have a diagnosis of dyslexia, I can tell you now that he has it".
Thanks for the info about the tinted glasses, the eye dr we saw today for a chck up was going to ask his friend in the next town over but he didn't promise anything. Oh well. :)

#4 Mozzy

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Posted 06 October 2009 - 06:15 PM

I would still push for an MRI with the epilepsy as well as an EEG because if he does have a scar on his brain which is one of the main causes of epilepsy then they can prescribe meds which are known to be better for that type of seizure or like I said you may be able to talk about surgery to remove the scar depending on if he has one and where it is.

#5 Steph

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Posted 06 October 2009 - 06:19 PM

Forgot to say she was initially against an EEG because she said ASD brains are wired differently anyway (where signals originate/go to when the brain is stimulated) so it would be nearly impossible to tell if an irregular EEG was autism-caused or siezure-caused. Didn't think to ask for an MRI, she seemed to think the form of siezures (focal siezures) were the most common sort among ASD and Caleb had a 1 in 3 chance of having epilepsy as part of his ASD, and another 1 in 3 chance of having eplilepsy because I have it.

What would cause scarring on the brain? She asked if he'd ever had a head injury, he hasn't. He never even fell over as a toddler or bumped his head playing, due to hypermobility he was late in all mobility milestones and is naturally worryingly cautious about play.

#6 Mozzy

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Posted 06 October 2009 - 06:24 PM

A scar on the brain can be just like a birth mark, no reason, no cause just there. A bit like a freckle or mole.

Thats really interesting about the EEG, I have never heard that before. I know several ASD kids who have had EEGs and I was told its easy to see epileptic activity and things like Autism should not prevent an EEG being done, I have had 3 or 4 now and I know Pip's daughter has had them too with no problems with the ASD showing up on it and causing doctors problems in telling the two apart.

I am seeing my Neuro soon who is an expert in epilepsy associated with things like ASD and Learning disabilities, I must ask him. Who knows I may not be epileptic at all. It might just be my ASD showing up on an EEG

#7 Steph

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Posted 06 October 2009 - 06:32 PM

lol I think if you have fits you probably have epilepsy ;) Its not mutually exclusive- ASD activity vs epilepsy but yes go ahead and ask maybe he'll have something you can feed back to me!

Bear in mind this woman is a paediatric neurologist, but I don't know if that would make any difference.

#8 Mozzy

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Posted 06 October 2009 - 07:42 PM

Thanks for the chat in the chat room.

I am very thankful for your input, I agree with you, I don't know why they medicated me but I might just stop my meds and see what happens. I mean you have tonic clonic seizures and don't take meds so me with complex partial seizures should not need meds like you said it does not do me any harm.

#9 Peanut75

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Posted 06 October 2009 - 07:52 PM

Caleb saw the paed neurologist yesterday. She gave him a clinical (dunno what that means- as opposed to medical?) dx of epilepsy and offered meds, but I said I wanted an EEG first to support her dx. She is doing a dx but warned it may not be conclusive evidence to support the dx but what we (his nan and I) told her, with the autism and the fact that I have siezures was enough to convince her.

So anyway, OT last week said Caleb has dyslexia, but they don't test for it until he is 8 yrs old. Caleb wrote his name on the chalkboard mirror-image backwards repeatedly, not with one or two letters wrong but all of it perfectly backwards. So between that and the fact that these tinted glasses help with stimming (ramming into walls, falling over, etc), I've asked the optrician to refer him to the opthomotrist for the testing involved in getting these glasses. Anyone have them, whats the process to get them and are they available on the NHS or will we have to go private? Thanks.


Hi!
My 6 year old son has aspergers and is under the Opthalmologist at the hospital eye clinic for his eyes. He has a squint. At his latest eye test I asked about tinted glasses because he has a sensitivity to bright light/sun light and thought the tint would help him. He gave us the new prescription/NHS voucher and included the tint in the voucher. So R got his standard lenses and frames with a tint for free. I hope this helps you. :excellent

#10 Lux

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Posted 06 October 2009 - 07:59 PM

We've just taken C privately to a Behavioural Optometrist who has dxed specific visual difficulties and he is having a test with a colourimiter?? tomorrow re the tints. Look at the BABo website if you want a private one.

Now I have the description of his difficulties, I can ask the gp to refer him for the therapy he needs, but not all areas have visual therapists, and not all private reports get an NHS referral. The therapy is very expensive, but the difference it should make to C will be worth it. Going to check with GP about NHS though.

#11 lennie len

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Posted 06 October 2009 - 08:17 PM

School can do a screening for dyslexia from the age of 7, but they can't diagnose, they would say something like "he probably has" or "he is at high risk of dyslexia".
Have a look on your local education website to see if there is a dyslexic outreach as the school should contact them if he does present as Dyslexic when they do their screening.....you will have to ask for the screening if they don't offer.

#12 Jolly Roger

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Posted 06 October 2009 - 08:25 PM

Forgot to say she was initially against an EEG because she said ASD brains are wired differently anyway (where signals originate/go to when the brain is stimulated) so it would be nearly impossible to tell if an irregular EEG was autism-caused or siezure-caused.

What?

Are you sure about this?

As far as I am aware autism does NOT show up on an EEG, nor does it interfere with an EEG or confuse the outcome of an EEG. If you know otherwise, please can you give us a link to the evidence for this?

I am very thankful for your input, I agree with you, I don't know why they medicated me but I might just stop my meds and see what happens. I mean you have tonic clonic seizures and don't take meds so me with complex partial seizures should not need meds like you said it does not do me any harm.

No you sodding well will not stop your meds, Munchkin. Not unless a properly trained and qualified consultant, after testing and evaluating you, advises it.

Diagnosing and treating epilepsy is a very delicate thing: get it wrong, and you could do irreparable damage.

Gosh an epilepsy dx with only one meeting!! I would question this

So would I. And I would NOT accept an epilepsy Dx without an EEG, nor would I accept advice in an Internet chatroom to stop taking epilepsy meds.

I am NOT impressed with this. :angry:

#13 Lux

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Posted 06 October 2009 - 08:38 PM

Forgot to say she was initially against an EEG because she said ASD brains are wired differently anyway (where signals originate/go to when the brain is stimulated) so it would be nearly impossible to tell if an irregular EEG was autism-caused or siezure-caused.

What?

Are you sure about this?

As far as I am aware autism does NOT show up on an EEG, nor does it interfere with an EEG or confuse the outcome of an EEG. If you know otherwise, please can you give us a link to the evidence for this?

I am very thankful for your input, I agree with you, I don't know why they medicated me but I might just stop my meds and see what happens. I mean you have tonic clonic seizures and don't take meds so me with complex partial seizures should not need meds like you said it does not do me any harm.

No you sodding well will not stop your meds, Munchkin. Not unless a properly trained and qualified consultant, after testing and evaluating you, advises it.

Diagnosing and treating epilepsy is a very delicate thing: get it wrong, and you could do irreparable damage.

Gosh an epilepsy dx with only one meeting!! I would question this

So would I. And I would NOT accept an epilepsy Dx without an EEG, nor would I accept advice in an Internet chatroom to stop taking epilepsy meds.

I am NOT impressed with this. :angry:


GOM I have read that there is neurological evidence of differences in the brain of NT and ASD.

I also want to apologise- I was scanning the thread and didn't read the bits you picked out about Munch and the meds....have to say, totally agree with GOM, Munch. Not a good idea with any meds, let alone epilepsy ones, hon. Keep taking them xxx

#14 Yorkie

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Posted 06 October 2009 - 08:48 PM

My lad has absence seizures.

When he was sent for his first EEG, we were told that it was still possible for him to have epilepsy even if nothing showed on the EEG. In the end it was the total opposite. He looked cool as a cucumber throughout, played on his DS and there was spike and wave activity on his EEG!

As far as ASD kids having different brain patterns on an EEG, load of rot! EEGs are difficult to do on kids on the spectrum, just like haircuts are!

Children with ASD are usually seen many more times by a neurologist before a dx is made compared to an NT child, as it is difficult to determine what exactly is a seizure and what may be caused by other general autistic reactions to heat, light, noise etc. If a ASD kid starts hyperventilating cos the school fire alarm sets off and has a seizure, thats not epilepsy, but caused by outside influences. Staring episodes might not be absence seizures, just stary patches. Seizures do not necessarily equal epilepsy.

Munchkin, you know what makes sense x

#15 Jolly Roger

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Posted 06 October 2009 - 08:59 PM

GOM I have read that there is neurological evidence of differences in the brain of NT and ASD.

That is true - there is recorded evidence that ASD & NT people show different traces in brain scans. The problem is that these differences are not consistent from one person to the next, and not even apparent in all people with ASD. We can't learn anything from this evidence

Epilepsy, meanwhile, is different. If you have a spike, you have epilepsy. Even if you don't have a seizure. (Although, as Yorkie pointed out, not all epilepsy shows up, so you can have epilepsy without a spike.)

However, there is no evidence (to my knowledge) that ASD traits result in EEG traces that obscure epilepsy traces or make a Dx difficult.

Epileptic seizures are an almost daily occurrence in my workplace. They are not fun. They are distressing, require medical attention, and when they are successfully managed everyone is happier.

Finally, everyone,

Please consult your doctor before making any changes to any medication you take!




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