Parent. Researcher. Teacher.

Anecdotal Parent Reports About MB12 Nasal Spray

Shared with permission

From: "bradfordhandley" <bradfordhandley@yahoo.com>

I posted this on CK2 on Saturday. It's now Monday, the talking [Jamie's talking] continues:

We've had our share of ups and downs in the year we have been treating Jamison, although with a lookback over any period of time he has continued to make great progress.

Speech & cognition are our central focus right now, and the words have come frustratingly slowly, but slowly thy have ticked up to the point where Jamie was saying as 10-25 words a day in the last few weeks.

For the last 2 1/2 months, Jamie has been receiving a very play-based form of ABA here in Portland and he's very engaged and has mastered many skills, but still the words just have not flowed.

On Tuesday this week, Jamie's team of ABA folks (2 women) and his speech therapist sat down to review where we are. The topic we spent the most time on was "echoing" - the ability to say back a word said to you. Jamie was averaging about a 5% hit rate on echoing, and we talked about the many "techniques" (yes, I'm cynical about anything not biomedical) to raise the echoing response rate.

On Wednesday this week, Jamie had 2 sessions of 2 hours each with each of the ABA women (both of whom are great, great people.)

And...with the sensitivity to echoing fresh in everyone's mind, they both focused on it:

- Session 1: 95%

- Session 2: 100%

They both absolutely freaked out!!! The woman who runs the place we use came out of the room, crying, hands on head, talking a mile a minute "I just don't know what to say, this doesn't happen, there's just no way, in a day, I just don't know what to say, I mean . . .I'm rethinking everything, this could only be biomedical, blah, blah, blah...."

They were both, in a word, astonished. We, of course, are freaking ecstatic, but, like always, cautioned.

Here it is now, Sunday. Jamie is repeating every word we say to him, without exception. Spiderman? Sure. Daddy? Of course. Diaper? Sure.

We haven't heard most of these words before. I shudder to imagine how many words in a day we could get him to say right now...

So, what happened? Well, here's the string of events, as best we can describe:

- SCD started 3 weeks ago, noticeable changes

- TD-DMSA, we are on Round 3 this weekend

- Last weekend, 2 nights of Detoxamin suppositories

- And, and this is the big kicker because the change was near instant: a nasal spray of methyl B12 and folinic acid, made by Coastal Compounding. This idea is courtesy of Stan Kurtz, the dad with the amazing video of Ethan, and recommended to us by Dr. Mielke.

I have nothing gainst Methyl B12 shots, they have done great things for MANY. Jamie did not respond to them, we did them for over a year and tried many different permeatations. In one day, with the addition of the nasal, Jamie went from 5% echoing to 90-100%. I just don't know what else to say.

We've been calling everyone (including Kevin Barry - hi Kevin!) to let them hear Jamie talk, it really is an amazing feeling. We are trying to remain calm, we know this is a rollercoaster. Dr. Mielke, we'll leave you guys a message!!

As Annagram always, always says, NOTHING works for all kids. We did many things in a short period of time, the B12 feels like the biggie, but this is profoundly unscientific. But, it is such a shocking change, I wanted to report the news.

JB

[Two weeks later, J.B.'s wife Lisa writes...]

Hi Stan-

Sorry, we do get a little overwhelmed and backed up often! Jamie is doing great. Each day in therapy for the last three weeks has been his best - that is saying a lot! He is adding new skills, verbals, etc. without losing old ones, and his therapists say the rate at which he is learning is much faster than, well, before nasal MB12! We are definitely experiencing gains across the board in eye contact, interactiveness, lovingness, receptive and expressive language. He has also just seemed happier - and he is already a pretty happy guy.

All that said, he still has a long way to go. I can't wait until he is like Ethan in your video, ie. having a conversation, asking questions, empathy. He is talking, but at this first step, it is echoing and just the beginnings of unprompted one-word requests. I know that we have to start somewhere, but I guess having the big gain in some way revealed how much further there still is to go. Each gain is such a painstaking and hard thing for him! Precious little baby, he is working sooo hard!! Anyway, up next is Valtrex in about 2-3 weeks. Will definitely keep you posted and have fingers crossed.

Lisa

PS I thank you everyday for inventing nasal MB12 - thank you.

From: "Tracy McDermott" <jtmcde@sbcglobal.net>

Date: Sat Nov 26, 2005 9:40 am

Subject: Re: Mouthing and MB12 (From Rick and Dr. Neubrander)

Thanks Stan. We will take it! Last week we had our first spontaneous point, and today while waiting for breakfast when I prompted his PECS strip, and said "I want pancake", he said "I waa" with me!

He also said a very nice attempt at Bob prompted while Bob the Builder show was on!

Ty is basically non verbal, so we are seeing language gains. He has been using his 2 new words, up and out, consistently and spontaneously since day 2 of the nasal B12.!!!! (We are only 15 days into it!)

Tracy and Ty(3.4 yrs)

From: "leyanek" <leyanek@yahoo.com>

Date: Thu Dec 15, 2005 11:47 pm

Subject: Valtrex-gross motor delay/clumsiness

I recently joined the group and I've been reading over some of the posts. We are on nasal B12, switched from injections, and my son has had a slight increase in language with it.

He used to drag us to wherever he wanted us to go, now he is looking at us and spontaneously saying "come" to get us to go with him. Also, he has a few of his sentences back from when he was 1 and 2, before he regressed. Instead of just saying "water", he will say "I want a cup of water" and instead of saying "open", he's saying spontaneoulsy"open the door, please." Also, he just seems to feel better, haven't really seen any fussing that we usually see since starting it. I do want to note though that the first 2 days on nasal spray were bad! No language at all! I've been reading that most people see some results instantly if they are responders, but my son didn't respond until the third day. We are going to be starting Valtrex soon. After reading over the posts, it seems that those children who respond best to Valtrex have some clumsiness, or even gross motor delays.

One post even mentioned that if your child has delays in this area a trial of Valtrex would be good. This is the one area where my son does not have deficits so I'm wondering if he would still be a good candidate for Valtrex. He is unusually well coordinated and has really good balance. I would appreciate any advice. I have heard that when you try this you need to commit to at least one month.

Thank you!

Leyane

From: "abelcstkd" <colleen605@sbcglobal.net>

Date: Sat Nov 19, 2005 12:11 pm

Subject: Day 2 Nasal MB12, am I doing this right? and Wow's!

Hi,

My 7 year old (8 in Feb) son received his first dose yesterday.

Both yesterday and today, after the dose there was a red ring around the nostril, and a VERY LITTLE drip, less than a drip, came out. Is this how it looks after? Am I getting the full dose in there?

Day 1 -

Noticed:

big eyes

hyper behavior - running back and forth, bouncing on therapy ball,

running and then leaping onto couch. This is soemtimes his typical behavior so I cannot single it out as being related to the MB12.

After 30 minutes he calmed, sat and worked with me (mom) at the kitchen table for 30 minutes using the Lip Sync Flashcards. During this time this NONVERBAL child said:

a(pple) x 2

b(all) and ball

e(gg) x 2

g(um)

i(ce)

j(acks) x 2

k(ite) x 2

l(eaf) x 2

m(ilk) x 2

n(umber) x 2

o(atmeal) x 2

p(ie) x 2

r(ing) x 3

s(un) x 3

t(op) x 2

u(mbrella)

v(iolin)

w(agon)

Y(oyo)

He also make lots of sounds, like raspberries, lip smacking andstrong blowing using his diapraghm, something he is *unable* to do.

Some of the sounds on the second time through the cards, he said on his own (first time repeated me).

Needless to say, my son and I were very excited as we worked with his a-z cards:)

Colleen

Follow up.

Stan,

First off, thank you for the response, I greatly appreciate your input! We never tried the shots, so this is new to us. Yes I can put up with half an hour of hyper if it means sounds will follow shortly after!!LOL

I had a feeling I wasn't squeezing the bottle fast enough, or maybe it was that he shifted as the mist shot up his nose. I guess this is going to take practice to perfect.

I do have another question for you if you don't mind....about 7-8 hours after his dose this morning, he went to the fridge, took out the spray, set it on the counter, pointed to me and then pointed to the spray (his nonverbal way of saying "I want more spray") what do you make of that??? He must like the way he feels after, huh?

Thanks Stan, you're wonderful!!

From: "abelcstkd" <colleen605@sbcglobal.net>

Date: Mon Dec 12, 2005 5:00 pm

Subject: Re: Nasal MB12 spray in older kids

My son will be 8 in 9 weeks, I started him on nasal mb12 3 weeks ago, never tried the shots, and I have seen some amazing things in him ever since. He called me "mom" for the first time, has been attempting new words, as well as saying words daily. He is more focused and sitting in his classroom longer with fewer sensory integration breaks. Even his artwork has changed, he went from scribbling or just writing the alphabet and numbers, to making actual drawings. Over the weekend he drew a snowman, a christmas tree and self *portraits*, also has better memory recall, listening to us/following instructions, more interested in playing with games and interactive toys with us too! He has even cracked me up a few times with his sense of humor, laughing appropriatly at tv, and has been more affectionate with us, hugs, back rub/pats, and playing with your hair.

Good luck, Colleen, mom of Dylan (autism, *non-verbal*)

From: "anthonylori1" <anthonylori@comcast.net>

Date: Mon Dec 12, 2005 2:16 pm

Subject: Mb12 nasal spray--Day 4

Stan--Thank you so much for this group and for all you do!!

Everyone--I've been watching and waiting for my son to start this with Dr. Neubrander for weeks and his time has finally arrived.

This is his first intervention aside from CLO, GFCF and some extra vitamins. Today is Day 4 and I have a few questions. We are giving 1 spray in one nostril every day. We are having such great things that are obviously from the spray but the following I'm not sure of:

1) His appetite is back in a huge way, is this from the mb12? He can't eat enough and he is eating things he has refused for months. This child has lived on pancakes since going on the diet and he's actally ate 3 new things in 4 days. He just under 2 and had lost almost 2 pounds since his 18 months well visit.

2) His poop hasn't smelled at all---I mean not the foul smell he usually has, not enough that I even know he has gone until I opened the diaper, could that be from the mb12?

3) Today he had this black things in his poop--I know it sounds gross, but they were thin, black lines or specks of something and nothing he has eaten has looked like that. Any clue?

Also, if he is going to get side effects like sleep disturbances and hyperactivity andmouthing, when would I expect to see that begin?

Thanks for all you do.

Lori

From: "noaholiviaian" <phaselow@wi.rr.com>

Date: Fri Dec 9, 2005 4:53 pm

Oh, no. I'm not considering stopping the spray. Today one of our therapists commented on how his language "took off" this past week (she was gone for a week). She knows nothing about what I do with supplements. Ian is responding to questions much faster. He asked his first real question (3 words; but a question!) yesterday. It is coming.

I'll bet it is the spray sensation and not any real irritation.

I've never, ever given him a nasal spray before Wednesday....

Thanks, Stan.

Pam

From: "noaholiviaian" <phaselow@wi.rr.com>

Date: Thu Dec 8, 2005 8:47 pm

Subject: Re: Coastal's First Response

...My son is playing hide and seek with his NT brother right now. I just heard him yell, "You found me!" How cool is that?...

Pam

From: "Tracy McDermott" <jtmcde@sbcglobal.net>

Date: Fri Dec 2, 2005 2:22 pm

Subject: Re: Non verbal no more?! Nasal MB12 and language

Colleen,

We are 3 wks into the nasal B12 and yes, we are getting speech. My son had been stuck on the verge of language for 8 mos. now. Increased babble, with jargon that came and went... but had only 3 words, and they came and went too. Since starting the nasal (after a yr. of shots), we have appropriate use of out, up, and go! Even a few, "I go" (to leave or go upstairs), his bye bye is back, and the other day he said cookie doing his language builder cards, and when the ST asked him if he wanted to go over or under something, he said under!

Tracy

Ty 3.4 yrs

From: "angieskim" <angie.kim@stanfordalumni.org>

Date: Thu Dec 1, 2005 9:53 pm

Subject: Q on nasal spray application

I just tried this on myself and my son this morning for the first time. I sprayed a few times & primed it, then had my son put his head back, put in as far as it would go, then just pumped as hard/fast as I could. I felt a little nervous that I didn't do it right. I noticed when I was just squirting/priming it that the faster you pump, the more liquid comes out. So I feel a little nervous that I didn't do it right and my son didn't get the full spray. Does it get easier as you do it more? (No red came out, however, so I guess that's good.) I tried it myself, and couldn't really feel much. It's not a huge blast or anything. Is that right?

Another quick Q: do I have to prime every time, or just before the first time using the bottle?

On a happy-ending note (for today anyway, who knows what tomorrow will bring? - SIGH), it may be total coincidence, but my son had the best day he's ever had. His speech therapist observed him at school during recess and said he engaged in interactive play with other kids the whole time and initiated play, conversations, etc. Could this be the spray at work already? I'm SOOOOO hopeful. The shots had done nothing noticeable for us, and I just had such a good feeling about the nasal spray before even starting it. Here's to hoping it's not just a coincidence (and, more importantly, that it's not a fleeting thing!).

Thanks, Angie

From: "Jennifer Bidlovski" <bidlov@adelphia.net>

Subject:today and nasal spray

Date: Thu, 1 Dec 2005 18:23:09 -0800

To; "Stan Kurtz" <kurtzstan@yahoo.com>

Hi Stan,

I just thought to let you know that we came home today after our first try of the spray and for the first time Milo fed himself an entire applesauce out of a pretty small container. He didn't spill a drop. We were absolutely amazed.

Most likely life changing. You are amazing and really helped us to understand this disorder a little bit better. Thank you for your time and experience.

All the best,

Jen, Rocco & Milo

From: "abelcstkd" <colleen605@sbcglobal.net>

Date: Thu Dec 1, 2005 11:01 am

Subject: Non verbal no more?! Nasal MB12 and language My son started nasal MB12 13 days ago. We did everyday for the first 9 days, now on every other day since he was getting a little too active. He is doing much better on the every other day schedule.

In the last 2 days he has said: please, hurts (during OT session), mom, soup, yeah, sh(eep), all done, p(retzle) and many begining sounds in an attempt to repeat us.

Is anyone else getting speech?

Colleen

mom to Dylan, 7/autism