Could it "B"?

Nate has been on methylcobalamin shots since about February.  This is an activated form of vitamin B-12 and it has been found to be helpful to people with autism, especially those with the MTHFR gene (which Nate has).  The dose was increased in May.  We have definitely seen improvements in Nate with this addition, increased eye contact for sure, and slow steady progress in other areas.  The idea of giving shots for many parents is appalling.   I have been able to handle it with Nate- he was so dazed when we first started the shots that he didn't even react to the needle in his bum.  Every once in awhile I'd get a whine, but honestly he cried harder when I wiped his nose- no exaggeration.  As he became more aware, he started crying with the shots, but now he has progressed to being mr. attitude about it.  He runs away, laughing, and then after the shot he rubs his butt cheek while glaring at me just long enough to get his point across and then he goes back to whatever he was doing. 

When we went to see Dr. Brenner last week he stated that since Nate is a "responder" to the methyl-B12 but has not made a ton of progress we should go ahead and increase his dose.  I had been giving him 0.1 cc on monday wed and fri.  He increased it to 0.3 cc three times a week, but since I still had about 6 injections of the original dose he suggested I just double up on those for the next week and then go for the full increase when I refill.  So for the past week I have been doing double shot duty- Natey's poor bummer.  That being said---- there IS a difference.  An aside, these effects tend to take place very quickly, within days.  There are some kids where nothing is seen for up to a month who still end up being responders, but that is not the norm.  Once a child is identified as a responder they need to continue this treatment for approximately 3 years.  It's a small price to pay if you're seeing great improvements.

So back to the changes I am seeing in Nate- more repetition.  He is pointing to all of the different animals in his books when I say "touch _____".  He is choosing between 2 books.  When he was making a turkey at school today he said gobble.  I find him literally staring into my eyes with an intensity I didn't know he had in him.  He is tantruming more, oh joy.  There is just an over all increased awareness.  Then today I saw some physical proof of improvement.  I am not going to go into all of the science of it, plus it's kinda gross, but suffice it to say that many many children with autism have significant GI/poop issues.  It is linked with the MTHFR gene, impaired methylation, which makes sense since other individuals with this gene mutation tend to have diagnoses like IBS and crohn's.  Today, Nate had his first solid, non-grainy, and not nasty smelling poop in I can't even tell you how long.  I did a complete double take.  I know you are all thinking that all poopy diapers smell- I beg to differ!!!  We are talking BAD!  Normal poop smell is pleasant after that.  I believe this improvement is a result of the increased dose of methyl-B12 and the addition of leucovorin last week.  I believe his little system is functioning better.

Despite all of the positives, there has been one negative- and that is MAJOR sleep disturbances.  Now initially I would have said that this was more related to the fact that he is transitioning to a big boy bed, but he had several nights last week when he slept through the night.  The last 3 nights Nate has been up for literally 4 hours in the middle of the night.  And it's not that he was just awake, he was WIRED.  Reminded me a bit of Jack when he is going through a bad sleep stint.  I gave Nate a double dose of melatonin at 3am this morning and it did nothing.  I was starting to feel bummed out, as this can be considered an "intolerable" side effect of the methyl B12 if it persists, so I started googling my little heart out as usual.  Found this in a presentation given at a TACA conference by the foremost expert in methl-B12 and autism.

1. Folinic acid should be added after the first 5-week clinical trial but not at the same time as Methyl-B12. It should be added alone and its dose should start low and then be incrementally increased to see how it is tolerated. From my research, approximately 20% of children become hyper and/or cannot sleep when folinic acid is added.

So we added leucovorin- an even more broken down/active form of folic acid than folinic acid.  Guess what?  I increased the dose on Monday!  Can I say bingo now?  So tomorrow I will cut the dose of this and see if we get some sleep.  I really don't want to have to decrease the B12 when I am seeing so much positive, so I hope I am right about the leucovorin being the culprit.  Keep your fingers crossed for us.

Resources for ya:

http://www.tacanow.org/family-resources/methyl-b12-a-treatment-for-asd-with-methylation-issues/

http://www.drneubrander.com/

Aspergers and Fixations

I have frequently alluded to the fact that Jack is obsessed with airplanes.  But when I say this, I know that most of you cannot possibly understand the depth of this preoccupation.  Jack has done fairly well at keeping himself together the past 6 months or so.  In fact, I almost forgot just how intense he can get when it comes to his "area of interest".  Today, I remembered.

It all started innocently enough.  Jack was "helping" daddy paint some trim on the garage and back doors yesterday.  John grabbed a box out of the garage and told Jack to paint the box- fairly clever really.  However, Jack being Jack, painting the box was not enough.  He opened it.  He found the model of the BF-109 Messerschmitt that his dad had purchased several months ago- he put it aside for down the road, as it is for ages 10 and up, very delicate, complicated, and certainly not meant for someone Jack's age.  Jack went NUTS.  I was out at the time, but apparently John had Jack convinced that they could assemble it when he was 6 (yeah, that's next May).  A feeling of dread came over me- how long would that last?  And predictably, within the hour, Jack was asking John if he could drill a hole in the box so that he could see the propeller and bolt.  He asked this about 25 times between 4pm and 8pm.  And my anxiety was mounting.  I gave him melatonin, and he went to sleep.  I am a believer in melatonin solely for getting Jack to go to bed at night- in terms of helping him sleep through the night- not so much.  He didn't sleep through the night once this past week.  Last night, he woke up crying for the messerschmidt at 1am, 2am, 2:45am, 3:30am, and finally 4:40am.  At about 5:20, I finally took him downstairs.  And the meltdown began in earnest.  He wanted the box opened, I tried to explain over and over again that it was not really a plane inside.  Instead it was about 100 pieces, needed cement to be put together and did not even include the paint that was needed to make it look like it did on the box.  Of course this was beyond Jack's comprehension, and I can't blame him for that.  After about an hour of sobbing, I decided that the only thing I could do was take the box away.  I knew enough to expect an epic meltdown, but I had to weigh my options- one huge meltdown or an all day affair?  I chose A.  Turns out that both options sucked.

Jack hit the roof.  Climbing on things screaming, begging to have it back.  I decided to cut the picture out of the front of the box so he could hold it.  This has worked pretty well in the past when he is fixated on something- he has slept with many pictures in his bed over the years.  And it helped for about 20 minutes, then he was back at it again.  I decided to show him the contents of the box

It had no effect.  He wanted me to "fix" it.  There is no distracting or redirecting Jack when he works himself up to this point.  I remind myself over and over again that this is how his little brain is wired- that he is not being "bad", he is truly unable to refocus his attention.  But where do you draw the line?  Because his behavior does escalate, and his behavior becomes inappropriate.  I drew the line at him coming up to me, pinching me, and telling me I am a "bad mommy".  This was at 7am- about 2 hours into the fun.  Time out it was.  Jack has very high anxiety, and in the past I have found that putting him in time out and shutting the door does very little to help him understand that he did something wrong.  All he can think about is the fact that mommy left him alone, and he is trapped.  I certainly don't want him to feel like that.  So I leave the door open, sit in the doorway, and make him stay on his bed for the duration.  So at least he knows I am still there.  However, this takes away that whole parent getting a chance to regain their sanity piece of the puzzle.  In any case, he calmed down somewhat, and we tried downstairs again.    Unfortunately, the situation did not really improve.  The crying continued pretty much the whole morning.  He asked for "the plane" approximately every 2 to 3 minutes.  He yelled, he screamed.  After about 4 hours of this, 3 cups of coffee, and very little sleep, I found myself yelling back at him.  Oh crap.

I try so damned hard not to yell at Jack.  He is a tough kid, and the urge is strong at times, but I do my best to remain calm.  So when I found myself at this point I did what any self respecting mother would do when they are at the end of their rope.  I loaded the boys in the car and drove....and drove....and drove.  Across the bridge, almost to Delaware if I'm being honest.  Just to give you an idea of how tired Jack was, he fell asleep as we crossed the bridge, so after 20 minutes in the car.  I can count on both hands the number of times he has fallen asleep in the car in his life.  Not often.  Sadly, after a 20 minute nap, his picture of the plane slipped out of his hand, jarring him awake, and starting the crying fit all over again.  This continued for the whole drive.  I heard "I hate you" come out of my son's mouth for the first time today- that stings.  Being the exemplary parent that I am I turned up the music.  Mommy had to get some kind of break- especially since my eyelids were fluttering a little too frequently for my taste.

OK, so we made it until about 10:45- I called my parents.  They live on that side of the bridge, and "fresh" people would surely help right?  Ummmm....kind of.  We headed to their house, where Jack proceeded to tell them all about the plane.  My dad distracted him with his John Deere combine, and slyly hid the picture.  I could tell he thought he had solved the problem.  Ha, I say.  About 3 minutes later Jack was hysterical, looking everywhere for his plane.  There are times that I know my parents have thought I was exaggerating about Jack's obsessiveness.  He sleeps through the night at their house, is often distracted by the different toys, and of course my mom has the bird book.  I do not think they doubt me anymore!  He asked for that plane AT LEAST every 2 minutes the entire time we were there. About 2 hours.  At one point I looked at my mom and said "I just can't".  She said she couldn't even imagine how exhausted I must be, and I headed to the guest room for my own 5 minute time out.  I guess my parents decided to take the boys for a walk, because my dad came in to tell me that I should come sit in a chair in the family room while they were gone and found me curled up on the floor between their Murphy bed and a spare file cabinet.  He looked at me like I was on crack when I told him I was just fine where I was.  By the time I left, my dad was saying he was exhausted from Jack's antics today, and said he understood why I didn't feel the need to move earlier- too much energy would be exerted.  Let's just say that both of my parents hugged me extra tight before we left.

It was about 1:15.  The Ravens game was on.  John was undoubtedly entrenched in that- and Jack FREAKS when football is on in our house for some reason (although he didn't even notice it was on at granddad's).  I decided to drive around for a bit longer.  Nate was asleep within 5 minutes, as it was his nap time at this point anyway.  Jack fell asleep AGAIN before we reached the bridge.  We are talking exhausted here.  Victory!!!!  Only problem was that mommy needed serious coffee....but I knew better than to go through a drive thru.  That would wake Jack up immediately.  So I drove and drove some more.  After about 40 minutes it happened- I got stuck at a traffic light.  And Jack was off and running again.  He had dropped his picture and he went completely ballistic.  I repeatedly told him that I was not willing to get into an accident in order to pick up his picture and he would have to wait.  He was unable to listen to logic at this point though and just became more and more hysterical.  He woke Nate, who just stared at him like "what the f*** dude?".  We arrived home and Jack started back in on daddy.  I decided to take him up to his room and read with him for awhile- my last attempt at distraction.  He fell asleep AGAIN.  I guess crying all day is exhausting even for Jack.  He slept until 5pm.  I don't even want to think about what tonight is going to be like.  He hasn't napped in 3 years.  It could be ugly. 

exhibit A

He is still talking about it almost constantly, but he is at least calmer right now.  I walked away for awhile- for sanity.  It is painful to watch your child go through this- when Jack gets like this there is very little I can do for him.  His brain just cannot let go, cannot allow any other thoughts in.  It's disturbing to watch.  It has been so much better recently- but today was a blast from the past, and not a pleasant one.  Here's hoping that it was just a momentary blip. 

As always, a little info:

http://www.ninds.nih.gov/disorders/asperger/detail_asperger.htm

http://www.myaspergerschild.com/2008/09/aspergers-obsessions.html

Melatonin, schmelatonin

Dag nam it!!!  My great white hope has been at least temporarily dashed!  I mentioned in a recent post that I finally broke down and ordered melatonin for Jack- it is a natural sleep aid that many parents I have spoken with use for their children on the spectrum- particularly kids with aspergers.  Those brilliant little minds just can't seem to shut down enough to sleep through the night.  And after 5 1/2 years of not sleeping through the night- John and I are well, tired.  And John is cranky.  I, of course, am completely charming at all times (right honey??? lol)  I figured that this weekend would be a great time to try it out, as Jack is already exhausted to begin with from his first week of full-day kindergarten.  Surely this combination would give us a really really good chance of a full night's sleep.

So I gave him a dropper full of melatonin at about 6:45 last night.  By about 7:20 his little eyelids were drooping, and John and I were practically salivating at the thought of him going to and staying in bed without a fight.  He passed out almost right away.  And Nathan being Nathan fell asleep while I was rocking him and singing (maybe it's a defense mechanism, haha).  So by 8:15 we were free!  Usually Jack is up and down at least 10 times before going to sleep, so this in and of itself was a pretty big victory.  We had a nice, quiet evening, went to bed, and then.....

3:15- moooooooommmmmmmm!!!!!  help, starscream's gun!  where did it go? where is it?  help, help help!!!  You see, here was my first mistake.  Yesterday afternoon, as a reward for being a good boy his first week of school I gave him a small transformer that becomes a plane.  I had to give it to him in the afternoon because of school, which is unfortunate because the first rule of giving a new toy (particularly one that relates to an obsession) to a kid with aspergers is that it must be given to them first thing in the morning.  It is the only way that they have the chance to calm down a little and be able to unwind enough to sleep by bedtime.  We have had many a sleepless night when Jack has been given a new plane, or robot.  We once gave him a ride-on airplane, right around the time Nate was born, as a big brother present.  I had to cut a picture of the plane off of the box and tape it on the wall next to his bed in order to get him to lie down.  And none of us slept a wink that night.  I kinda hoped we were past that.  Anyhoo, I found the gun- without my glasses on- it's approximately the size of my thumb, so that was pretty impressive.  I told him to stay in bed.  returned to our bed

3:45- thud!!!  mommy, daddy, my bed is too crowded!  I have to sleep with you!  OK, so the reasoning behind this excuse is a mystery to me. 1 twin bed to yourself, or a queen bed with 3 people....which has more space?  Right?  So I walked him back to bed, told him if he wanted to keep starscream he'd better stay put this time, and went back to our bed.

4:20- I can't be alone!!!! I'm so lonely!!!  Mooommmmyyyy come here!!  I need protection!!!  I sent John this time as I was not going to be so comforting at this point.  Plus, John often conks out while in there, and Jack follows suit, and then everyone sleeps.  No such luck.  John came back to bed after the requisite 10 minutes and the rest of this early morning hours were spent shuffling back and forth, trying to get Jack to stay in bed, and finally giving up at around 5:30. Then tolerating him lying between us and alternately kicking us in the face and shins depending on what position he had thrashed himself into at that point for about an hour.  Then- breakfast.

So I remain my same zombie self.  I fell asleep in the OT waiting area this morning, as usual.  We WILL try again tonight.  Pray for us.  and for Jack if he doesn't sleep.  Kidding.  kind of.