It Just Crept Up On Me!

I was trying to make this evening somewhat productive after the last few days have been a wash.  We have been in lockdown basically since the Dr. Brenner appt- which makes me highly suspicious that this is where we picked up the bug, and I haven't had a chance to sort through all of the supplement/medication changes we made.  I did get a chance to research them, verify doses, and order the best possible formulations, the ones that were not prescriptions anyway.  It was funny, when I took Nate in to be tested for flu, I brought our regular pediatrician the note that Dr. Brenner always gives me to give to her as communication and she said Jenny, I'm a doctor and I can't read this one.  Worst thing was I had had to call both the local pharmacy and our compounding pharmacy and ask about all of the prescriptions he sent in before I could decipher the word she was pointing to- Carnitor.  Now if a nurse and a doctor can't read your handwriting- that's pretty bad.  I'll cut him a break, he sends hand written notes to our primary pediatrician- he gets major points for that.  So anyway, I started by just writing out exactly what I am expected to get into these boys.  And that is as far as I have gotten- too overwhelmed.  I need a new plan- hadn't realized how much we were up to- like I said, it just crept up on me.  And this is also with stopping things that didn't seem to be working.....
Here is our current list (this is a good reference spot for me- guarantee I won't lose this :))

probiotic:
Nate 1/4 tsp qd
Jack 1 tab qd

Calcium:
1/2 tsp qd

MSM
3 grams/day- 1 scoop

P5P- Nate
50 mg tid

zinc
15mg/day 1/2 cap

GABA- Jack
700mg tid

curcumin- Nate
1 scoop qd

miralax- Jack
1 scoop/day

Inositol- Jack
2000 mg tid (1 scoop)

fluconazole
2ml qd

clonidine- Jack
0.2mg qhs

leucovorin
2.5mg 3x/week

carnitor
1tsp bid

vitamin c
1/4 tsp qd

speak smooth (fish oil + vitamin E)
1 tsp qd

methyl B12 shots
Nate 3x/wk
Jack 2x/wk

transdermal glutathione
0.5ml 2x/d

Gasp.  I gotta find me a schedule, or a way to sneak an NG tube in while the boys are sleeping every night.  Seriously, is it just me, or is this just obscene for kids who don't swallow pills yet?  Well Jack actually can swallow small ones now, but I am not pushing my luck- actually maybe I should.  Ugh....help!

Moved to Tears

Thanksgiving.  What a day.  I haven't been able to post because I have been busy Black Friday shopping- anyone else get a Wii for $12???  Thank you Johns Hopkins Hospital for those Target gift cards!  I would not, however, recommend going to Wal-Mart on Thanksgiving night (or really ever).  Police backup was present, and they were needed.  When I heard a policeman say "the first person who touches me is getting arrested"  I decided it was time to hit the road.  Sheesh

As I mentioned before, both of my sisters came for Thanksgiving this year, as well as my brother in law and their kids.  What a great day!  Jack first stalked his older cousin Will (who was incredibly patient by the way) but eventually found his way to his cousin Graeme who is only a year older than him.  They played baby lions for quite a long time and had a blast.  Both of my boys sat at the kids' table for the whole meal, granted we distracted Nate with gluten and dairy free rolls, which are apparently heaven.  It's nice to see that the kids can go quite awhile without seeing each other and pick up right where they left off.  My sister lives in Indiana so visits really take some doing.  That's just how it was with my cousins growing up and we can launch right in to our banter when we see each other even now.  

The "star" of the day was my little Nathan.  We are almost at a week into the tripled dose of methylcobalamin now, and let's just put it this way, two of his grandparents were moved to tears on Thanksgiving.  He is much more assertive in asking for what he needs these days.  While I was standing talking to my mother in law, who also came for a visit, Nathan walked over to me, pulled on my leg and said "come up" clear as day.  Instant tears in my mother in law's eyes.  And then when we were getting ready to leave Nate turned to me and said "I go bye bye".  It was my dad's turn.  He actually confessed that he had never heard Nathan say any words.  I know that I am always telling people that he is using new words, improving, making more eye contact, etc, but I guess that seeing really is believing.  And I am so glad that they both got that chance.  Because words coming out of Nathan's mouth are such a miracle- every time I hear them, I get teary too.  It takes so much work for him to use them, and I firmly believe that the methylcobalamin is really really helping.  I think the rest of our family now agrees!  What an awesome day. 

Take That!

OK, so first and foremost, I stopped the leucovorin on Friday morning.  Saturday morning we made it to 4:30am (as opposed to 1am), then he took a 3 hour nap on Saturday.  Sunday morning he made it until 5am, then took a 2 hour nap today.  Let's pray this trend continues.  Feeling good that I figured this out before we all went stark raving mad. 

In even more exciting news, Nathan has apparently decided he would like to take this opportunity to say "screw you" to the 1st percentile for speech and comprehension.  And he decided that the best way in which to accomplish this was to blow mommy and daddy's minds this weekend.  Here is what we have heard:  up, eat, pat, nose.  Those are definite, and for the first time, all this weekend.  Pat and nose came from some of his ABA exercises, having him "touch nose" and "pat head".  I ask him to do these at least a few times a day, and yesterday morning he decided to do them to me instead of on himself.  So he touches my nose and nonchalantly says nose.  Then pats my head and says pat.  Who is this kid???  He said "open" at OT.  He also has "remastered" ready, set "go".  My legs are sore from lifting him so many times, but I'm good with that.  I went to sit down after doing it like 15 times last night and he came over to my chair, grabbed my hand and said "come" until I laid back down and did it a few more times.  He also easily transferred this "game" to another purpose, which is an even better story. 

I rarely mention our dog, Riley, but yes, we have a dog.  We got him literally the week we returned from our honeymoon, so we have had him for about 8 years now.  He was our first "baby", the sun of course rose and set on him back in the day.  He has tolerated a lot from the boys over the years, and we have tolerated a lot of his barking waking them up.  He usually goes after a bone if he wants to play these days and will literally drop it in your lap and then begin a staring contest until you get up to play with him.  Last night he went for a squeaky toy which he hasn't done in a long time.  He was having a "puppy spurt", running all over the downstairs and basically going ape.  Nathan could not stop laughing at him.  So as I was throwing the toy, I started trying ready, set, .....and he got it right away....go!  After a few minutes he started picking up the toy when Riley dropped it and throwing it for him.  Didn't go very far and Riley seemed a bit confused by this.  Meanwhile, John and I were both staring, mouths wide open.  I have never seen Nate directly interact with anyone besides John or me at home, let alone the dog.  This was huge for him!

All such positive changes this week.  And tomorrow I increase his dose of methylcobalamin again.  Keep your fingers crossed.  This progress is surely no coincidence.  I am hoping for a really good week.

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/