Showing posts with label folinic acid. Show all posts
Showing posts with label folinic acid. Show all posts

Tuesday, 16 April 2013

Jack Put It Best....

Nate has had a couple of pretty good days.  Words have been flowing quite a bit more freely than we have heard, well ever.  Yesterday he was mad when I went to get him dressed for school and he said "I no want get dressed"  or something close to that.  Last night John asked him if he wanted to go upstairs with mommy and he kind of repeated it.  He was trying to say "one two three" with Miss Gwen during his session.  He asked for more song at bed.

I am happy about it.  But over time I have learned to take each day as it comes, and all progress as a "good day" until Nate proves otherwise.  A year ago, I would have felt like "here we go!".  That this was "it" and Nate was going to start making huge leaps like some of the other kids.  I have set myself up for disappointment too many times, so now, I try to just smile and think, yes, he's in there somewhere.  I restarted his leucovorin after hearing one of the doctor's lectures on cerebral folate deficiency and being told that hyperactivity on leucovorin is actually a good sign.  I started at a smaller dose to begin with and will gradually increase, as treating cerebral folate deficiency is showing great promise in autism research.  Basically, I could dump a truckload of folic acid on Nathan and it might not make it into his brain, because he lacks the ability to transport the active form across the blood-brain barrier.  The treatment for this is folinic acid (a further broken down form of folic acid).  Which by the way, is what leucovorin is. 

There are some very interesting articles on this if you follow the link below:
http://www.rossignolmedicalcenter.com/articles/


So we are doing that.  And after listening to Dr. Anju speak, I also started Nate on something called "yeast aid", which contains multiple natural ingredients that support the immune system and help control yeast in the body, things like olive leaf extract, goldenseal (thank God he will now pass his drug test, lol), oregano, and cranberry extract.

http://kirkmanlabs.com/ProductKirkman/112/1/Yeast-Aidandtrade;-Hypoallergenic/

So those are the latest things I have changed.  Oh, and John has started doing some "juicing" as well.  His first John driven intervention- whoot whoot! 

I am watching, and I am waiting.  I am not allowing myself to become too excited at any positive changes- they could be transient.  I of course really really hope they are not.

Jack said it best this morning.  I asked him to go open Nate's door because I could hear him in there awake.  Jack said to me "I like Natey, do you?"  I answered "of course I love Natey".  He then said "I just have to wait right?"  I asked him what for, although I already knew the answer, he has been saying this since Natey was born.  And he said "for him to get bigger, so someday he can talk to me, right?".  He was looking at me so earnestly, so obviously thinking that Natey really is still a baby, that I felt the need to sit down with him for a few minutes and explain in more detail than I have in the past that Natey is having a lot of trouble learning how to talk, which is why we send him on the special bus every day.  He seemed to get it, and in the end, he is right, we do just have to wait.  We can try everything under the sun, but in the end, we can't control this.  Just have to pray and wait. 

Saturday, 19 January 2013

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!

Thursday, 15 November 2012

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/