Re: Carnitine Supplement and MB 12 Nasal Spray

[Guest guest]

I Don't know about the medication you are talking about, but the B12 nasal spray

isn't good for kids that don't know how to stuck through their nose. My son is 3

and he was on the nasal spray and nothing happened his b12 levels were still

low. His doctor put him on injections because then you know the b12 in getting

into their systems. Next time me tested they were normal!!

Just thought I would share!!

>

> We saw the GI this morning for a follow-up on , age 27 mos. Hadn't seen

her in a year so last time was before his diagnosis of apraxia and low tone.

Gave her the , Agin study to check out. Basically, she is open to

trialing anything with except chelation and anti-fungals. So she gave me

a scrip for Levocarnitin to trial. Is is a liquid, says Levocarnitin 10 sol on

the bottle. We give 1 tsp twice a day. Anyone know if this dose is low or

average? is 2 and weighs 30 lbs. If you use carnitine supplements, how

long before you see results and what positive results did you see? She said to

give it 6 weeks. This is mainly to see if it helps improve his low tone and

energy.

>

> She is also wiling to write me a scrip for the MB 12 nasal spray but she wants

me to contact the compouding pharmacy first and get some more info about it. In

the article I read on MB 12 nasal spray by Stan Kurtz, he mentioned Coastal

Compounding so that is who I am contacting, even though I live in St Louis.

Anyone else use them? Is your scrip just for MB 12 or is it compounded with

folinic acid? I am going to wait until the 6 week trial of Carnitine is over

before I introduce the MB 12 spray.

>

> Thanks in advance for any input!

>

> , mom to , 27 mos.

>

[Guest guest]

Hi ,

My son, Larsyn 3.4yo has been on Carnitor for almost 1 year (he has severe

verbal & oral apraxia, dyspraxia, hypotonia, and Sensory Processing

Dysfunction). His carnitine levels tested low (his metabolic geneticist ordered

the test), so he was put on the same dose as your son. The dose is the average

dose for their weight.

Unfortunately, I never noticed a difference in his tone or speech. He also is on

M-B12, but just 2000micrograms orally. We are vegetarians, so that is the main

reason for the B12 supplements. I am considering trying subQ injections, but not

sure if it is necessary for him. Hopefully you will see a difference, like

everyone says " each child is different " !

Good Luck,

Jenna Weil

>

> We saw the GI this morning for a follow-up on , age 27 mos. Hadn't seen

her in a year so last time was before his diagnosis of apraxia and low tone.

Gave her the , Agin study to check out. Basically, she is open to

trialing anything with except chelation and anti-fungals. So she gave me

a scrip for Levocarnitin to trial. Is is a liquid, says Levocarnitin 10 sol on

the bottle. We give 1 tsp twice a day. Anyone know if this dose is low or

average? is 2 and weighs 30 lbs. If you use carnitine supplements, how

long before you see results and what positive results did you see? She said to

give it 6 weeks. This is mainly to see if it helps improve his low tone and

energy.

>

> She is also wiling to write me a scrip for the MB 12 nasal spray but she wants

me to contact the compouding pharmacy first and get some more info about it. In

the article I read on MB 12 nasal spray by Stan Kurtz, he mentioned Coastal

Compounding so that is who I am contacting, even though I live in St Louis.

Anyone else use them? Is your scrip just for MB 12 or is it compounded with

folinic acid? I am going to wait until the 6 week trial of Carnitine is over

before I introduce the MB 12 spray.

>

> Thanks in advance for any input!

>

> , mom to , 27 mos.

>

[Guest guest]

We're on the same levocarnitine - 1 tsp 2x per day.

So far - nothing radical but he is gaining strength and climbing, stomping,

etc... I think we'll keep it up.

Ellie

>

> We saw the GI this morning for a follow-up on , age 27 mos. Hadn't seen

her in a year so last time was before his diagnosis of apraxia and low tone.

Gave her the , Agin study to check out. Basically, she is open to

trialing anything with except chelation and anti-fungals. So she gave me

a scrip for Levocarnitin to trial. Is is a liquid, says Levocarnitin 10 sol on

the bottle. We give 1 tsp twice a day. Anyone know if this dose is low or

average? is 2 and weighs 30 lbs. If you use carnitine supplements, how

long before you see results and what positive results did you see? She said to

give it 6 weeks. This is mainly to see if it helps improve his low tone and

energy.

>

> She is also wiling to write me a scrip for the MB 12 nasal spray but she wants

me to contact the compouding pharmacy first and get some more info about it. In

the article I read on MB 12 nasal spray by Stan Kurtz, he mentioned Coastal

Compounding so that is who I am contacting, even though I live in St Louis.

Anyone else use them? Is your scrip just for MB 12 or is it compounded with

folinic acid? I am going to wait until the 6 week trial of Carnitine is over

before I introduce the MB 12 spray.

>

> Thanks in advance for any input!

>

> , mom to , 27 mos.

>

[Guest guest]

Why are you waiting after 6weeks of carnitine " trial " to begin MB12?

[Guest guest]

Hi ,

Our son is also on 1 tsp of Levocarnitine, twice a day. While he tested low

on carnitine, he doesn't have hugely obvious tone issues (gross motor skills are

on track, fine motor skills are slightly delayed), so I honestly never saw a

huge jump or anything since being on the carnitine.

The B12 shots have worked awesome for our son in terms of speech. I'd

personally recommend doing the MB12 shots instead of the spray. We tried the

nasal spray for about 2 weeks, and it was honestly miserable for both me and my

little guy, having to squirt the nasal drops in his nose every day. We've found

that the subcutaneous shots (twice a week) are quick and easy once you get the

hang of it, and it's the best way for the body to absorb the B12. Here's a

website from Dr. Neubrander, a famous DAN! dr who's well known in regards to B12

protocol: http://www.drneubrander.com/dev/index.html

There's also a great group run by Stan Kurtz, who you mentioned.

Search the group lists for " MB12/Valtrex, " many parents on there are very

knowledgeable about the B12 stuff. We use Hopewell Pharmacy for our B12 shot

compounding, they're also very well known and highly respected. Ours has

folinic acid, which some kids need, others it might make them hyper.

Best of luck,

Mom to 3 1/2 year-old twins: (apraxia and PDD-NOS) and Cecilia

(typically developing)

From: kelly_momtojandb <kobl@...>

Subject: [ ] Carnitine Supplement and MB 12 Nasal Spray

Date: Thursday, August 20, 2009, 3:25 PM

We saw the GI this morning for a follow-up on , age 27 mos. Hadn't seen her

in a year so last time was before his diagnosis of apraxia and low tone. Gave

her the , Agin study to check out. Basically, she is open to trialing

anything with except chelation and anti-fungals. So she gave me a scrip

for Levocarnitin to trial. Is is a liquid, says Levocarnitin 10 sol on the

bottle. We give 1 tsp twice a day. Anyone know if this dose is low or average?

is 2 and weighs 30 lbs. If you use carnitine supplements, how long before

you see results and what positive results did you see? She said to give it 6

weeks. This is mainly to see if it helps improve his low tone and energy.

She is also wiling to write me a scrip for the MB 12 nasal spray but she wants

me to contact the compouding pharmacy first and get some more info about it. In

the article I read on MB 12 nasal spray by Stan Kurtz, he mentioned Coastal

Compounding so that is who I am contacting, even though I live in St Louis.

Anyone else use them? Is your scrip just for MB 12 or is it compounded with

folinic acid? I am going to wait until the 6 week trial of Carnitine is over

before I introduce the MB 12 spray.

Thanks in advance for any input!

, mom to , 27 mos.

[Guest guest]

Have you tried acetyl-l-carnitine instead of l-carnitine? My son tested low

normal on carnitine. We tried the l-carnitine for months with no results. I

switched to alc and we noticed improvements in speech within days.

> >

> > We saw the GI this morning for a follow-up on , age 27 mos. Hadn't

seen her in a year so last time was before his diagnosis of apraxia and low

tone. Gave her the , Agin study to check out. Basically, she is open to

trialing anything with except chelation and anti-fungals. So she gave me

a scrip for Levocarnitin to trial. Is is a liquid, says Levocarnitin 10 sol on

the bottle. We give 1 tsp twice a day. Anyone know if this dose is low or

average? is 2 and weighs 30 lbs. If you use carnitine supplements, how

long before you see results and what positive results did you see? She said to

give it 6 weeks. This is mainly to see if it helps improve his low tone and

energy.

> >

> > She is also wiling to write me a scrip for the MB 12 nasal spray but she

wants me to contact the compouding pharmacy first and get some more info about

it. In the article I read on MB 12 nasal spray by Stan Kurtz, he mentioned

Coastal Compounding so that is who I am contacting, even though I live in St

Louis. Anyone else use them? Is your scrip just for MB 12 or is it compounded

with folinic acid? I am going to wait until the 6 week trial of Carnitine is

over before I introduce the MB 12 spray.

> >

> > Thanks in advance for any input!

> >

> > , mom to , 27 mos.

> >

>