[LONG] MB-12 Debate? - Our NHS Paed's Comments Today :-)

[Guest guest]

Hi All,

Not posted here recently, but I do read loads.

Interestingly we've being doing ABA for 2.5 years and biomed (GFCF +

other diets and supps for about the same time).

At the start of 2005 I decided that Callum had progress on his ABA

programme, but wasn't sustaining his gains and was unhappy (if fact

our original provider drop our services - we are now with another

respected organisation).

The New Years resolution I made was that I was going to focus (but

still do ABA as well as before) on the bio-medical side. I booked to

see Dr Usman in Chicago (Feb 2005) and started a broad spectrum of

vits & mins and fish oils, etc.

In Feb 2005 in Chicago we did the consult with Dr Usman (who in my

opinion is fantastic and we are very lucky that she is treating our

son) we did all the blood, urine, stool and hair testing and discussed

the results 2 months later (BTW: very heavy metal toxic / autoimmune

issues, etc, etc).

We've modified Callum's treatments accordingly - no chelation so far,

but we started with MB-12 injections (from Coastal) March 2005

For those who don't know - Callum is 7 years old (now - birthday was

Nov) and non-verbal with severe ASD and global developmental delay.

After 1-2 weeks of the MB-12 injections we witnessed: -

(1) Increased vocalisation sounds, high pitch screaming " eeee " and

babbling;

(2) His ABA therapist noticed he was more focused and concentration

was very high;

(3) Socialisation: He started to play with his younger sister and

independently with animal toys (never done that before);

(4) Sense of humour - came back really quickly - he'd laugh at stories

that were funny, Disney DVD's & books, etc;

(5) Eye contact was better - though it had always been fair before;

Downsides:

Sure there were plenty: -

(1) Sleep distrubance (was the worst) - he'd not go to bed, when he

did sleep it was only for a few hours - then he was hyperactive and

needed watching - very, very tiring :-(

(2) Increased stimming and mouthing objects and dribbling. Callum has

always chewed plastic (shame most kids toys are made from this stuff :-(

(3) Increased aggression to himself, others and objects. He would

bang doors, plastic toys on TV set, head banging returned again,

biting his hands, hitting himself and others (sister, parents, tutors,

etc);

(4) Sure there were some other lesser ones, but can't remember without

looking in notes and I'm late for work :-(

ALL of these downsides latest with Callum for approximately 4-6 months

and trust me they were very very trying :-(

Other people visiting notice Callum's attitude changed - he was

co-operating more, more attentive, baby sounds returned (he started to

say DaDa to me, NaNa to his Grandmas, No & Yeh returned appropriately

At the 1st May Bank holiday 2005 he said " No " to me when I asked him

if he wanted another drink :-) BRILLIANT.

Then, coincidentally on the 2nd May Bank Holiday 2005 - he told his

sister to " Get Off!! " (AMAZING) when she pushed him off the jigsaw

puzzle piece she wanted and told him to " Get off " .

Finally on 20th October - after visiting Dr Heard on 19th Oct 2005 -

while we got Callum out of his Epsom Salt bath we were asking him if

he was tired and wanted to goto bed - goto sleep - Nite, Nite - he

said (in front of my wife and I) " Nite, Nite! " - Marvelous!!!

Today, we've had our NHS Paed appointment - who's been watching Callum

over the last year or so (very concerned about his lack of weight and

crazy father :-) It got so bad that he was going to contact Social

Services about his concerns. He wanted a BIG meeting with all of

Callum's carers and treatment team (including Dr Usman from Chicago) :-)

Well today - he's seen Callum (who actually has been ill with cold for

the past 2 weeks) and was amazed to see him so calm, attentive - great

eye contact, communicating and understanding receptive instructions -

like show me the lion, monkey, shark, giraffe, come and sit down, show

me your hair, feet, etc.

The NHS Paed said " he'd never really seen Callum's face or eyes before

- as he spent most of the time in the corner of his office or with us

avoiding looking at him, but not today " .

He also noted about Callum's demenour (sp?) and socialisation - he

asked Callum to give him " high 5's " which he did and played along with

some of the other games.

Our NHS Paed is now content that what we are doing (we've just started

with mild chelation [Nov 2005] - using Authia Cream TTFD+MB-12) and

have a telephone consult with Dr Heard in Decmeber as we've repeated

the entire hair, urine, blood and stool tests and we'll discuss these

results.

We're going low and slow and Callum is happy, communicative (with PECS

and some Makaton signs now) and I'm never more convinced that the

whole approach is working for Callum :-)

I remain optomistic and confident that as chelation contines - we'll

seen improved gains and hopefully the return of speech (which I am

sure is still in there - struggling to get out).

Lastly, I'd like to thank everyone (but especially Mandi for being

there) who contributes so much on these and other forums and devotes

so much of their time and energy to supporting others less fortunate

or informed.

Best wishes to everyone,

Steve, Joanne, Callum & Ellie-Mae

- XXXX -