RE: Kids w/ Classic Autism, PDD-NOS & Speech Delays

Page 112 of 116 [ 1729 posts ]  Go to page Previous  1 ... 109, 110, 111, 112, 113, 114, 115, 116  Next

nostromo
Veteran
Veteran

User avatar

Joined: 12 Mar 2010
Age: 51
Gender: Male
Posts: 3,321
Location: At Festively Plump

15 Nov 2015, 6:34 pm

HisMom wrote:
nostromo wrote:
We're up to full dose now of Lamotrigine and there are noticeable changes. Big improvement in toileting, as he is now independentantly taking himself to the toilet quite regularly. He had an accident yesterday but he was trying to get to the toilet when it happened and it was the first accident in days. He's also started playing a game of sorts. He gets my electric toothbrush, runs over to me, turns it on and pokes it in my mouth and encourages me to brush my teeth. This is apparently quite hilarious :-) . My mum also got him dancing to some music (!).

In isolation these are small things but they are behaviour changes that I think indicate the medicine is working.


YAY for James ! Three cheers for the Lamictal ! ! !

Thank GOD you decided to start him on it. He'd probably have been rattling 19-to-the-dozen had you started him 2 years ago, when we first discussed it, but better late than never.

Post a video of him dancing... PLEASE ! ! :D

Be nice if the Drs had listened when we said he was having visible seizures when he was only a few weeks old and he hadn't spent the first eight years of his life an undiagnosed epileptic.
Hindsite and all that being the wonderful thing it is, but a piece of advice - don't trust any Drs & I have a load of other examples of why not!!



cyberdad
Veteran
Veteran

User avatar

Joined: 21 Feb 2011
Age: 52
Gender: Male
Posts: 10,451

16 Nov 2015, 1:02 am

nostromo wrote:
Cyberdad Your approach makes a lot of sense to me. In effect as your daughter gets older and her body mass increases you are effectively weaning her

I prefer to use drugs sparingly or not at all if an alternative presents itself. I am in various FB groups with American parents and some of the kids have been on every drug I've heard of and still the behavioural problems are there.

I felt we had no choice with my son though. He has epilepsy, his brain electrical activity is all over the place which is pretty serious and needs treatment.


Yes - that's exactly right. The drugs served some purpose when she was young in order to adjust to mainstream life. She's still got lots of catching up to other 10yr olds but she's made big gains and her enthusiasm to be part of mainstream school might be enough to wean her off eventually...Anyway that's the aspirational goal

I might have already asked but have you enquired about medicinal marijuana for your son? I've read it's success in controlling epilepsy is very good. Oxytocin is currently being clinically trialled and looks like it could be the world's first treatment for autistic stimming/lack of social skills.However it may not be suitable for adolescent girls/women as it could intefere with menstrual cycle.



HisMom
Veteran
Veteran

Joined: 27 Aug 2012
Gender: Female
Posts: 1,271

21 Nov 2015, 4:35 am

cyberdad wrote:
have you enquired about medicinal marijuana for your son? I've read it's success in controlling epilepsy is very good. Oxytocin is currently being clinically trialled and looks like it could be the world's first treatment for autistic stimming/lack of social skills.However it may not be suitable for adolescent girls/women as it could intefere with menstrual cycle.


Is marijuana confirmed to have a beneficial effect on seizures ? I was told to look into it for my son, but although a few states have legalized the use of marijuana as medicine, there don't appear to be any completed large scale case studies that actually prove that it is any more efficient than current AEDs. Epidiolex (CBD) is the only drug currently approved by the FDA for use in some cases of intractable epilepsy as a "compassionate act" for a small number of people at specific treatment centres.

As for oxytocin, there has been quite a bit of conflicting information reported. A Stanford University study found that there is no significant differences in oxytocin levels in the CSF of individuals with autism and NT individuals, and that these levels tended to depend on family history / genes rather than one's neurology. For example, if NT parents had high levels of oxytocin, their kids - NT or ASD - also tended to have high levels of oxytocin. Regardless, oxytocin has been implicated in social skills. An allied study - also at Stanford - found that individuals with low levels of oxytocin tended to have poor social skills, regardless of whether they were NT or had ASD.

Just another day in the life an ASD parent. Lots of studies, but not enough information.


_________________
O villain, villain, smiling, damnèd villain!
My tables—meet it is I set it down
That one may smile, and smile, and be a villain.
At least I'm sure it may be so in "Denmark".

-- Hamlet, 1.5.113-116


cyberdad
Veteran
Veteran

User avatar

Joined: 21 Feb 2011
Age: 52
Gender: Male
Posts: 10,451

21 Nov 2015, 4:59 am

HisMom wrote:
cyberdad wrote:
have you enquired about medicinal marijuana for your son? I've read it's success in controlling epilepsy is very good. Oxytocin is currently being clinically trialled and looks like it could be the world's first treatment for autistic stimming/lack of social skills.However it may not be suitable for adolescent girls/women as it could intefere with menstrual cycle.


Is marijuana confirmed to have a beneficial effect on seizures ? I was told to look into it for my son, but although a few states have legalized the use of marijuana as medicine, there don't appear to be any completed large scale case studies that actually prove that it is any more efficient than current AEDs. Epidiolex (CBD) is the only drug currently approved by the FDA for use in some cases of intractable epilepsy as a "compassionate act" for a small number of people at specific treatment centres.

As for oxytocin, there has been quite a bit of conflicting information reported. A Stanford University study found that there is no significant differences in oxytocin levels in the CSF of individuals with autism and NT individuals, and that these levels tended to depend on family history / genes rather than one's neurology. For example, if NT parents had high levels of oxytocin, their kids - NT or ASD - also tended to have high levels of oxytocin. Regardless, oxytocin has been implicated in social skills. An allied study - also at Stanford - found that individuals with low levels of oxytocin tended to have poor social skills, regardless of whether they were NT or had ASD.

Just another day in the life an ASD parent. Lots of studies, but not enough information.


The University of Sydney will be running one of largest clinical trials in the world on a oxytocin nasal spray for treating social deficits in ASD kids, I'd post the link but their website seems to be down?



HisMom
Veteran
Veteran

Joined: 27 Aug 2012
Gender: Female
Posts: 1,271

21 Nov 2015, 2:22 pm

cyberdad wrote:
The University of Sydney will be running one of largest clinical trials in the world on a oxytocin nasal spray for treating social deficits in ASD kids, I'd post the link but their website seems to be down?


Please post a link to the site once it's up and running.

Are you going to enroll your daughter in it ? Unless she's already going through puberty, I wouldn't worry about oxytocin's effect on menarche, menstrual cycle etc. The benefits outweigh the risk, IMO. Of course, YMMV.


_________________
O villain, villain, smiling, damnèd villain!
My tables—meet it is I set it down
That one may smile, and smile, and be a villain.
At least I'm sure it may be so in "Denmark".

-- Hamlet, 1.5.113-116


nostromo
Veteran
Veteran

User avatar

Joined: 12 Mar 2010
Age: 51
Gender: Male
Posts: 3,321
Location: At Festively Plump

21 Nov 2015, 3:08 pm

The Dr did not seem concerned by my sons actual seizure events, I assume because they are predictable, consistent and short. What she was interested in was medicating to control his brain wave activity and allow him to function better. I'm not aware of any studies of the effect of medical marijuana on brain function in people wifh my sons condition, of course Anecdotally there are lots of examples of kids that have started talking days after starting on it, and children whose seizures are controlled only by MM when nothing else worked. What I fascinating is the fact that the human brain has receptors for cannibanoids and I wish there would be studies to investigate further at a scientific level. There are thousands of active substances in cannabis many of which must be useful, THC which is the reason pot heads use it and what gives cannabis a bad name is only one of those thousands.



cyberdad
Veteran
Veteran

User avatar

Joined: 21 Feb 2011
Age: 52
Gender: Male
Posts: 10,451

22 Nov 2015, 1:58 am

nostromo wrote:
I wish there would be studies to investigate further at a scientific level. There are thousands of active substances in cannabis many of which must be useful, THC which is the reason pot heads use it and what gives cannabis a bad name is only one of those thousands.


Unfortunately the stigma over marijunana as a banned narcotic has mean't research is decades behind what it should be...



HisMom
Veteran
Veteran

Joined: 27 Aug 2012
Gender: Female
Posts: 1,271

23 Nov 2015, 2:07 pm

Happy birthday, James ! :)


_________________
O villain, villain, smiling, damnèd villain!
My tables—meet it is I set it down
That one may smile, and smile, and be a villain.
At least I'm sure it may be so in "Denmark".

-- Hamlet, 1.5.113-116


nostromo
Veteran
Veteran

User avatar

Joined: 12 Mar 2010
Age: 51
Gender: Male
Posts: 3,321
Location: At Festively Plump

23 Nov 2015, 5:38 pm

HisMom wrote:
Happy birthday, James ! :)

Thanks! We had a very low key birthday just us, the two grandmas and one uncle, a few presents and as usual had to encourage him to rip the paper open. Got him a swing, a book and a sweatshirt.

Earlier in the day Michelle turned up at his unit with a birthday cake, that was a hit; he was flapping his hands ninety to the dozen and very keen to have a piece, I think Mum turning up in the middle of the day plus with a cake was quite the pleasant suprise.



ealltech
Butterfly
Butterfly

User avatar

Joined: 11 Nov 2015
Age: 29
Posts: 13
Location: LA

16 Dec 2015, 2:27 am

Yes please.



nostromo
Veteran
Veteran

User avatar

Joined: 12 Mar 2010
Age: 51
Gender: Male
Posts: 3,321
Location: At Festively Plump

04 Apr 2016, 6:07 am

Six years toilet training, the last two years intensive and it seems we might be finally winning. He is going to the toilet more independently than not. Still having accidents but well less than 20% of the time.



cyberdad
Veteran
Veteran

User avatar

Joined: 21 Feb 2011
Age: 52
Gender: Male
Posts: 10,451

05 Apr 2016, 8:07 am

Great news Nostromo!



kraftiekortie
Veteran
Veteran

User avatar

Joined: 4 Feb 2014
Gender: Male
Posts: 63,908
Location: Queens, NYC

05 Apr 2016, 8:08 am

Great accomplishment!

How's it going as far as school is concerned?



nostromo
Veteran
Veteran

User avatar

Joined: 12 Mar 2010
Age: 51
Gender: Male
Posts: 3,321
Location: At Festively Plump

05 Apr 2016, 1:52 pm

You mean toiletting at school? Going well there too basically the same progress.

The independance is great. Going into our ensuite and finding him sitting on our toilet having taken himself vs finding poop on the floor - just fantastic!



nostromo
Veteran
Veteran

User avatar

Joined: 12 Mar 2010
Age: 51
Gender: Male
Posts: 3,321
Location: At Festively Plump

31 Jul 2016, 3:15 am

Today out of the blue while with my mother my son looked at his shoe and said "Shoe".

Given that it's seven years since he last uttered a word, thats quite something. Unfortunately I didn't get to hear it and no amount of coaxing him will get him to say it or anything else again.