Author Topic: A Bit Of Good News :)  (Read 1599 times)

Twoapenny

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A Bit Of Good News :)
« on: July 09, 2016, 07:57:33 AM »
Hi lovely people :)

I thought I'd keep this apart from my rambling thread so it doesn't get lost in there but we have had some very good news :)

As you know, my boy has autism and learning difficulties and for the last two and a half years has also had extreme fatigue, problems with walking and various other odd things going on.  We've been backwards and forwards to doctors and hospitals and no-one has been able to work out what the problem is and so eventually he was referred to a neurologist, who we saw this week.

Not only was this chap very nice and went to a lot of trouble to explain what he was checking and why (which I find very helpful) he is also of the opinion that my son is experiencing day long absences as part of his epilepsy, which until now has been very mild and has only affected him for a few seconds at a time.  He will need more tests to confirm it but if it is that they can probably manage it reasonably well with medication and it shouldn't cause too many problems for him in the future.  He's also been on a new range of supplements after a lot of tests with a nutritionist and they seem to be helping with his overall energy levels and muscle strength and he hasn't used his wheelchair now for almost two weeks.  He went to Youth Club this morning for the first time for eight months and walked further yesterday than he has for about a year.

I am so happy and relieved that it isn't something degenerative (which was my main concern) and that it seems to be improving now.  He's much happier in himself and it feels like things are starting to move in the right direction.  Just wanted to share :) x

Hopalong

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Re: A Bit Of Good News :)
« Reply #1 on: July 09, 2016, 09:23:53 AM »
I am so glad for him and for you!
There's no good news that matters more.

I can't imagine what he lives with,
and as a caregiver, how steadily you cope.

hugs
Hops
"That'll do, pig, that'll do."

Meh

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Re: A Bit Of Good News :)
« Reply #2 on: July 10, 2016, 03:02:54 AM »
:) Can take a lot of docs to find a good one, what a difference one smart and helpful person makes. Glad you found an ally.

Twoapenny

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Re: A Bit Of Good News :)
« Reply #3 on: July 10, 2016, 03:55:39 AM »
Thank you, Hops and G, it has really boosted me to know it isn't something that could lead him to be even more disabled than he already is, he has enough on his plate already!  G, you are so right about docs, this guy simply knew his stuff well enough to know what to do and how to do it.  The system in the UK doesn't work terribly well for complex problems because you have to start with the most general doctor and then work your way through a number of referrals.  At each stage you draw a blank and then get referred further up the pyramid until eventually you get to the top of the pile, and there the nugget of gold awaits!  But it's a very slow process and there's no fast tracking system, you just have to queue knowing that you'll find you're in the wrong queue and have to go and start queuing somewhere else :)  But it's great to have finally got to that point and to feel that there is a way forward now :) xx

Hopalong

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Re: A Bit Of Good News :)
« Reply #4 on: July 10, 2016, 06:54:15 AM »
Yeah, it did strike me that 2.5 years is a VERY long time for a child to wait to be referred to a neurologist, when epilepsy had already been diagnosed. So sorry.

I am, absolutely, officially, No Fun, but...
https://www.sciencebasedmedicine.org/ak-nonsense-on-full-automatic/
and
http://www.quackwatch.com/01QuackeryRelatedTopics/Tests/ak.html

Debunking woo is a pet-rant area of mine, do feel free to ignore! No offense shall be taken. (I just can't stand it when I think people are abused by fakery. Then again, I love placebo and wish I had more susceptibility. Makes things nicer.)

Hugs both,
Hops
"That'll do, pig, that'll do."

Twoapenny

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Re: A Bit Of Good News :)
« Reply #5 on: July 10, 2016, 09:17:57 AM »
Yeah, it did strike me that 2.5 years is a VERY long time for a child to wait to be referred to a neurologist, when epilepsy had already been diagnosed. So sorry.

I am, absolutely, officially, No Fun, but...
https://www.sciencebasedmedicine.org/ak-nonsense-on-full-automatic/
and
http://www.quackwatch.com/01QuackeryRelatedTopics/Tests/ak.html

Debunking woo is a pet-rant area of mine, do feel free to ignore! No offense shall be taken. (I just can't stand it when I think people are abused by fakery. Then again, I love placebo and wish I had more susceptibility. Makes things nicer.)

Hugs both,
Hops

Unfortunately two and a half years isn't long to wait in the UK, Hops, it's very usual here to have to wait years to see specialists and to also have health problems dismissed as being psychological  or because someone's a malingerer or attention seeker.  People think having the NHS is a great thing because you don't have to pay at the point of use but unfortunately it's a very poor system that doesn't really work, particularly if you have complex needs, and many kinds of medical care aren't available at all.  If I'd known how bad it was before all of this happened I'd have taken out private health insurance but of course I'd never been ill so had no idea the system didn't work!  But you live and learn; they're busy privatising it all now anyway so I'm sure it will only get worse (ever the optimist!) xx

lighter

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Re: A Bit Of Good News :)
« Reply #6 on: July 10, 2016, 02:34:26 PM »
Tupp I'm glad to pop in and find good news posted from you and your son. 

Lighter

Twoapenny

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Re: A Bit Of Good News :)
« Reply #7 on: July 11, 2016, 01:29:11 AM »
Tupp I'm glad to pop in and find good news posted from you and your son. 

Lighter

Glad to be able to post good news and it's lovely to see you, Lighter, I hope things are going okay? xx