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

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Happy birthday, Cyberdad !

50 mg of Lamictal a day is still really low, unless he weighs 25 lbs (which I hope he does not) ! A conservative dosage (per our American neuro) is 2 mg / lb of body weight while an aggressive dosage is 4 mg / lb of body weight. YMMV.

Also, make sure to followup with a 24 hour EEG 6 months after reaching full dose (this will also help ensure if the Lamictal is working and to make adjustments to dosage, if necessary).

Finally, as I mentioned to you before, please make very sure that you are supplementing the Lamictal with high dose methyl folate (5 mg per day) as Lamictal is known to deplete folate levels in the CSF. Folic acid is *not* the same thing as methyl folate, so be sure to be supplement with the right product.

Good luck !

Thank you for that reminder HisMom, I had given up on the idea of the methyl folate when he was refusing to take all pills and I was in a state of wondering what the hell we were going to do. Actually I was quite anxious and stressed about the pill taking or lack thereof, I was wondering what we were going to do if he kept refusing, but fortunately it was like a light bulb went on and he started taking the pills. We just hold them in our hand and hold a drink of water and he puts the pills in his mouth and guzzles them down. And not just the Lamactal, we can give him Paracetamol now, and he takes his Melatonin tablets instead of us having to crush them and put them in his toothpaste.

It sounds like such a small thing, but this is a bit of a life changer for us, and I think the best thing to happen to us all year!

He is 27.5Kg & according to the Pediatrician the standard dose for his weight would be 50 - 75mg so she's started him on the 50mg level to see.

Toileting is still up and down. Getting better on the poo, he has taken himself independantly five times in the last few weeks, whereas prior to that in his life he had only ever done it three times, so we might be on the upward there. Wee is different matter, he has gone back to wetting himself a lot. Yesterday he was out with his carer and her sister, and he wet himself standing on a street corner. Then they took him to the library and he wet himself there and at that point they had run out of clothes so I had to go up with spare clothes. What a sight when I go there.
In the area where they have books for littlies was my son lying on the ground playing with a basic puzzle board, his pants are quite wet around the groin area and his top too. Because my son had been bolting all day the carer had purchased a bright purple dog lead and had it attached to him and was holding it in her hand. Under his bottom was some disposable changing mats to keep the wee off the floor.
And all around were the parents with there little three year olds reading them books and doing there best not to look at the larger incontinent non-verbal kid lying on the floor who has to be restrained on a leash like an animla! Or so I imagined anyway..
Fortunately this sort of thing doesn't really bother me it is what it is, but I suppose it bothers other people.

But the wetting is a tad annoying. We've gone back to 1/2hr dry checks now and we'll just keep plugging away at it I guess. And keep making him cleanup his messes which he doesn't like.
The easy thing would be to go back to diapers, but long term that is not the right thing to do of course.

Oh and don't mention the Cricket. Had moderate hopes there of at least being slightly competitive in periods, but Aus are just too good at home on the Gabba and NZ are getting a proverbial pasting. Impressive stuff from the Aussies.
But then we do have the Rugby World Cup (only thing we are good at lololol)

That's about 60 lbs, so a "standard" dose for him is about 120 mg. Since Lamictal comes in 5 mg pills, the closest would be 125 mg / day. Did she explain what her reasoning is for limiting his medication to about 1.25 mg / lb of body weight ?

Methyl folate can cause serious hyperactivity, so start slow. You can start as low as 500 mcg per day, and titrate up from there, based on how he tolerates it.

Also, have you and the Mrs decided about that 23-and-me testing I told you both about ? Glad the poop patrol is seeing success and I hear you about the urination. We're seeing major pee regression here and multiple accidents per day.

It's going to be about $220 NZD for the 23 and me but we do want to do it, just need to budget a bit for it.

My son ran a fever yesterday and had another seizure. I just get these premonitions now based on his behaviour prior to it. This one was shorter (3-4 minutes vs 5 minutes) and less intense than they normally are (his breathing was more regular and his eyes were staring ahead whereas in the past they have rolled back in his head).

So although I was disappointed it is an improvement I believe as I think his seizure was more 'under control' and I also need to consider that he is still titrating up at this stage to a full dose. Reported all info back to the Pediatrician.

It was still upsetting for me. Even though I know it's OK and I know to expect them I hate this

Later on my son bounced back and seemed better but then last night his fever started up again but a lot hotter. But no more seizures. This is usually the pattern, he gets one over and done with and thats it thank god. He has only ever once had back to back seizures.
But I spent last night looking after him sleeping on a matress on his floor so I could hear out for any seizures (I hoped) and making sure he was cool and keeping him hydrated and feeding him a panadol and nurofen when he woke and once I did that he really seemed to cool down nicely.

So anyway here is the interesting thing. He was in our family bed by that stage with myself and my wife and in the middle of the night he decided to jump out of bed and have himself a shower in our ensuite. So he went in there and I see him reach for the lightswitch. Now the thing about that is it's only a few years if any that he has realised that lights are useful and that he can control them. Previously he would just stumble around in the dark not seeming to care either way and just stimming and making noises. But in this case he had an objective: "I want to get to the shower ergo I must see where I am going". The other thing that struck me was he has never been in our ensuite while it was dark so he didn't know where the switch was but he instinctively groped around on the left of the door frame at switch height - where light switches are usually found. About a second later he clearly had established there was no light switch there and so immediately went to the right side of the door frame, looking intently with his EYES in the half light (he does a lot of things only by feel which is damn annoying as it's so half arsed most of the time) for the switch and turned it on.
Now all this struck me right then and there, because it was such purposeful and normal behaviour that it seemed - odd!
I guess this demonstrates at a limited level perhaps basic executive functioning (a sequence of things that need to happen), not to mention learnt behaviour and memory and generalisation (light switch might be here or might be there)?

I'm so used to him just generally running about, hooting and hollering, hand flapping and stimming and having toilet accidents that it really was quite nice to notice that.

Probably nothing to many others whose children are more accomplished but I thought about it and felt encouraged

Contact your neuro, too, IMMEDIATELY about the seizure. While he is still titrating up, it could mean that he needs a more aggressive approach / dose than he's currently scheduled to get (2 mg / lb as opposed to 1.25 mg / lb).

Our dosage just got upped by another 25 mg on Friday, because the EGG had detected an absence seizure (that I was unaware of), so the neuro contacted us to tell us that he needed a stronger dose (plus, he's grown and gained some weight in the past 17 months).

The rest is all really good news. Especially the purposeful execution of a series of steps to get from Point A to Point B (mine still does not bother to turn the lights on when / if he wants to play in the bath tub, so that's really good) AND he's getting TT-ed. I like that ! Hooray for Lamictal ! !

Yep I already contacted her with detail about all the events and got a reply early this morning and she said to take him to the GP today if his illness has not improved as it could potentially relate to the medication, however as it is reports from the home front say he is a "box of fluffies" (a local term for happy and energetic) and his usual happy self which is great.

We see the Pediatrician again in two weeks, by that stage he will be up the full dose on this original 'trial setting' and we'll discuss next steps there in light of what has happened. I want to ask about another EEG post this introduction of medication, also I want a bit more clarity around the purpose of this medication for my son, there are different levels recommended I see for seizure control (higher) vs 'mental health' (lower doses). The feeling I got from her was that she really wasn't concerned about his seizures being that they are short and related to known events (fever) but that the purpose was really to help him with functioning. IIRC She was of the opinion that the seizures weren't dangerous and are not causing him any harm. That was of some comfort, but I want to clarify that till I'm blue in my face. I also want a label for the type of seizures so we can understand them better. I can't find a good description that matches, most other epileptics seem to have tonic-clonic seizures but in his case he gets little or no muscle movement, he starts staring and goes a little stiff initially and then goes limp but there's no jerking. He struggles to breathe and lots of saliva comes out his mouth and his face goes grey/blue. His eyes have rolled back in his head in the past and he hasn't breathed for periods and gasped like a fish. I felt that yesterday he may have still had some level of awareness, his eyes wouldn't move around but they didn't roll back and his pupils still focused a bit I thought.
Also when searching about for typical preceding events leading to seizures in epileptics I only really see temperature related to Febrile convulsions, yet I know of other Autistics even adults whose seizures are brought on by running temperatures.

I also see that higher doses can impact cognition in that Lamictal of course by it's nature suppresses the electrical activity the brain uses to function. FWIW I have seen some adults say that for example at as low as 200mg they could tell they weren't able to think as well. Hence I want to be careful in not going to higher levels without good cause in trying to help my congitively impaired son!
This is a typical snippet; these are people talking about their own real-world experiences so it's subjective but it's what they felt was happening
http://www.crazyboards.org/forums/index ... nctioning/

But overall, plenty of positives so far all else considered.

I cannot comment on mental health ... HA !

However, IMO, every anti-convulsant seems to carry side effects, some more devious than others. I remember mentioning Keppra to you as being a racetam and hence potentially a nootropic, with huge cognitive gains resulting from its administration. HOWEVER, a lot of parents told me that their children went bat sh1t crazy on the meds and their behaviours were so out-of-control that they had to stop the Keppra and go back to the old venerable, Depakote.

I think the important thing is to keep your focus razor sharp. At this point, IMHO, your whole and sole focus should be on how to normalize his EEG, to ensure that his brain no longer suffers from increased / abnormal electric / seizure activity. I believe - and I am not at all a medical professional or expert - that we should not be worried about things like "cognition" when the brain's physiology is abnormal. You can start worrying / working on cognition once the EEG has normalized.

The thread you posted is pretty old and I don't know if those people have anything else going on, that caused the Lamictal to lower their cognitive abilities. It could have been that large doses of Lamictal caused a severe deficiency of folate levels in the brain, which then affected cognition, which is why I suggested immediately supplementing methyl folate into his diet. Or it could be that those posters have other disorders or take other medications (such as Lithium for their BPD) which caused them to have lower levels of "smarts" (as they call it). Who knows ? You cannot compare your kid with them, and if we go fishing for trouble, we're eventually bound to net some.

At this point, I'd just start taking detailed notes / logs of his daily activities / behaviours, and discuss your concerns with the ped when you meet with her in 2 weeks' time. Give Lamictal about 6 months to work its magic, then push for a 24 hour EEG. Once that EEG shows up normal, THEN you can worry about how to improve his functioning ability / cognition.

At this point, take it easy and stay away from forums aptly titled "crazyboards". You don't need that annoyance in your life at this time.

Recent article on Facilitated Communication (which continues to not fade away and die).
http://www.slate.com/articles/health_an ... ities.html

Oh thanks!

My daughter's medication has not been adjusted since she was 5 (she's now 10)

It's still 10mg/day Lovan and 20mg/day Ritalin

Our pediatrician was not very helpful and we haven't taken her back for 5 yrs! probably time we reviewed the dosage...

Well, hello there, Cyberdad. Was wondering where you were !

Has being on the same dose for so many years of Ritalin still helped (as in, continues to have a beneficial effect) ? Have you seen / felt that a higher dose is needed ?

We have been thinking of adding a non-stimulant ADHD medication like Guanfacine for him, but that won't be until he has been at his new dose of Lamictal for at least another 12 weeks.

I can see that the slow release Ritalin starts to wear off now around 5pm and she gets a bit cranky. So as she gets older the effect of the current dosage will start to diminish, however not inclined to increase the dosage due to concerns I have over dependence. I'm trying to combine some behavior therapy with the toddler dosage with the eventual goal that she might be able to manage her own behavior in future.

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.

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.

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 ! !

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!!

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.