Six Month Update on Sam - Very Loooooong - Witter Warning!

[Guest guest]

This update is long, but I need to write it all down and loads of folks from

all over have asked for it J

We had a good time at Disney at New Years, Sam wasn’t at all phased by

crowds or the noise, sat beautifully on the buses holding the foot plate for

the

major buggy we took with us (mostly for me to lean on LOL) with no stimming AT

ALL – spooky, just sitting there like a normal boy, looking out of the

window and watching people get on and off.

He queued well (usually about 10-20 mins) however, there is no way I would

want to do Disney without the special pass and that’s without taking the

kids/Sam!! He didn’t like the Stitch ride where we sat individually and had a

brace come over our heads – I didn’t like that either. On the Dino-land

ride in

Animal Kingdom he instinctively buried his head in my shoulder at the scary

bit – you know, like a normal boy J

However, he did start butting my shoulder with his head, which hurts after a

while, so I took to offering him my hand – palm side and he butted that. I

thought maybe bacteria at the time but maybe that was low B's and low

minerals.

We had experimented with both oral and TD EDTA during December. Both made

him stimmy, gave him yeast flare (?moving metals - there isn't any sulphur in

EDTA) and my gut feeling was that it was actively pulling minerals. We did

frequent dosing rounds with loads of minerals during and after but I think it

was all too much. My plan was to go back to DMSA/ALA in the new year.

When we got back I went back to the Liquid B’s from Metabolics (using multi

while we were away) and the butting stopped in 24 hours. Phew! We restarted

DMSA/ALA and saw some yeast which I expected after the break, as in – moving

metals causes yeast and he had time to build up more than usual to pull with

the break. We started seeing small but definite stuff with every round – BOUT

TIME TOO after all these years!!

After phone consult with Dr H at the end of Feb we started TD-LDN. I couldn’

t afford both the LDN and the MB12 so we dropped the MB12 (6 months) having

seen good stuff initially and then seemingly fade away, no negatives to speak

of apart from requiring adjustment to his other B-vits particularly B2 – if

he got red rash around his mouth extra B2 would make it disappear in 24

hours. I figured this might be MB12 spinning the cycle and therefore using up

more

of the other B’s in the process.

We went in on full dose of 3mg LDN given at around 1.00am with good effect

and no negatives. I had done 3 weeks of oral LDN last year and felt he did

well but the dosing 3mg out of a 50mg tab and not knowing how much was stuck to

the side of the cup made dosing tricky so decided to wait for the TD. He

seemed to look better, healthy and more sociable - seeking out his brothers to

play on the trampoline and just ‘hanging’ with them – ahhhhhhhhh J

At the end of March we went to see ‘The Brushing Man’ who examines for

retained and immature reflexes and individualises a programme of brushing

designed to stimulate the mid brain – I think its something akin to the stuff

they

do for kids with CP per the Peto Institute. Well it all sounded like hocus

pocus voodoo to me but a friends son has done very well on the regime and I

figured it couldn’t do any harm J

Sam was not particularly compliant with the examination but they did manage

to get the basics done. Sam has a retained reflex in his spine which should

have been lost in the womb and still has the newborn hand grasp reflex –

perhaps that explains why he always preferred to hold my little finger than my

hand when out and about. When he first started pulling us to stuff he wanted

when he was 4, it was always one finger only, like his hand wasn’t

comfortable

being in the cupped position or maybe just being that much in contact –

though

he was much improved with his tactile aversions by then.

Within 3 weeks he went from looking mechanical on a 3 wheeled scooter and

stopping to physically lift the scooter into a different direction – to

looking

smooth (if a little poor on steering) on a 2 wheeled micro-scooter and being

very pleased with himself J He also started having what I described as ‘

normal’ kid type accidents, tripping up and stuff – the brushing man

explained

all this but you'd need to watch my hands to understand. It’s a good thing

and shows some changes happening as his body gets used to knowing where it is

in relation to other things.

RBC minerals in April showed low minerals across the board – something we

have never seen in 4 years worth of DMSA/ALA including a 9 month stint on TD

DMPS. We stopped Chelation and piled the minerals in – Metabolics Ionics,

Citramins II and BCN, retesting early next month.

I totally forgot that I could have been doing ALA alone and not worrying

about the minerals being depleted – DUH. Anyways, after dismissing NCD

because

of MLM earlier in the year, I revisited and chatted with folks actually using

the stuff. We are not able to sign up as distributors and get the discount

from the UK so another US mum sorted me out with supplies – thanks A!

We started at the end of April, with 1 drop x 3 and raising the dose by 3

drops each day. I started the same time. Day 3 we both had yeasty wee+++++. Sam

does not have stool changes or many yeast behaviours these days so smells

and bedwetting with Candex are really the only clues. Upped probio’s and that

cleared up over 72 hours. (I will write about my experiences in another

mail).

Then we had a spooky rash, looked like stinging nettle stings, mid trunk and

then – poof it was gone. He didn’t seem bothered by it.

Receptive language took a leap, he is extra happy, seems very confident.

Within a week he was balancing on the scooter, posing like his brothers,

turning corners with ease – and at speed (arghhhhhhhhhhhhh) and when we went

to

the park and he scooted off with Tom and Joe – well, I was watching a normal

set of siblings go off into the distance – that was spooky, scary and

exciting all rolled in to one – don’t get me wrong, Sam is waaaaay from

being a

normal boy, but its awesome to watch him looking like one J

This is far too long already and I am tired so I am gonna list some of the

stuff we have been seeing since the NCD late April and the Russian Choice GI

at the end of May. We have done one round of regular Chelation in this period

with oral DMSA and TD-RLA.

‘Asking’ for brushing by putting his arm around me and taking me to our

bedroom and dive bombing on the bed and waiting for me to start J

He was swimming with SLP qualified respite worker, with her pulling him by

his fingertips and saying Weeeeeeeeeee while he giggled, he loved it, she

pulled without saying weeee, the second time he said WEEEeeeeee with perfect

articulation and intonation and then looked very scared that the sound had come

out of him and wouldn’t do it again, just like he did when I got the very

first vocal imitation ‘Buh’ out of him in March. He was really wrapped up

in the

moment then too, almost like the words can come out if he is relaxed

enough?

Thats his first word since 13 months BTW

He also moved up the side of pool to the deep end holding on to the side

whilst Nicky swam out to the middle – she could tell he wanted her to come

over

but she pretended not to understand - he was having trouble signing and

hanging on LOL, she told him to come to her – and he did – swam right out

with no

problems, he has never done that without armbands or jacket although I

suspected he might be able to.

He can now ‘blow’ on command now, only learnt to blow in an accidental

fashin in January - new years party streamer he found int he bin at Disney LOL

He is now watching my mouth intently when I sing – like he is trying to

figure out how I make the words come out. He puts on his favourite track in the

car and touches my chin if I don’t start singing straight away. I say a word

and touch his chin - he contorts his mouth trying to figure out how to make

the sound come out - bless!

He saw me winding up the power lead on the vacuum and went and opened the

door to the cupboard for me, I didn’t even know he registered where we even

keep it!

When we are out in the car and come up to a junction, he looks left and

right, leaning forward like I do to check for traffic J

The early morning wakening is a thing of the past – no more 5.00-6.00am –

now he sleeps through till 7.00am

He is very calm and relaxed – he used to ping about the place, busy rather

than hyper – the other day I thought I had lost him – NO VERBAL STIMS –

excuse me? I found him relaxing on the sofa with his legs crossed watching the

DVD

and using the remote control – wow!

No longer holds on to my finger – prefers to hold hands properly or link

arms as they do at school.

When we go out to the freezer for an orange juice lolly he is closing the

drawer with his foot like anybody would do (it’s the bottom drawer) – he

used

to bend down and struggle to push it with his hands

We are seeing some head nodding and shaking for yes and no – finally after 6

years of trying to get him to do it!!! This comes more easily when he isn’t

thinking too hard about it – its spontaneous and it seems to surprise him but

not cause worry like the word/attempts did

Made his first ever spontaneous comment with PECS at school last week and

then went off to take supermarket vouchers to the office as requested - by

himself, did his job and returned to classroom J

He can now hold up the right number of fingers for 1-5, he concentrates hard

on number 3 getting his little finger and thumb to point inwards and in last

few weeks no longer needs to use his other hand to help get the position

right. We use this mostly for action songs at home.

Nicky came to take him out a few weeks ago and set him up – she wrapped up a

Percy Pig sweet and placed it in the car so he could see it when he got in

but couldn’t reach it. He made all sorts of signs and gestures but she said

you have to ASK for it Sam it’s a Percy Pig, he got mad and spat out a

‘Puh-Puh

’ for her eventually and she made a big fuss and he looked very pleased with

himself. BTW If I try this he would walk away from me rather than make

sound. She can push him further than me.

He is keeping him pants on!!!!! (always preferred to be naked at home) He

has a white bum instead of an all over tan for the very first time and he is

putting them on first thing without even being reminded! (and changing them if

he gets a skiddy!)

Tidying up his room when prompted (he doesn’t make a much of a mess anywhere

else)

He often gets Marmite round his face when eating toast – I have started

taking him to the mirror, giving him a wipe and telling him he has a dirty

face,

his reaction the first time was to wipe the rash in the mirror but he knows

that wasn't right and is concentrating hard and managing to wipe the right

place – this is a kid that would NEVER look in a mirror after he regressed

Receptive up +++ or is it desire to listen? saw him holding new DVD

the other day and said – oh what have you got – Sam went over and passed it

to

DH and waited for a response – show and share eh? Love it!

He is asking (gestures) his brother for a go on his new (adult sized) bike –

and letting Joe put the cycle helmet on him (OMG – this is kid who will NOT

EVER wear hats) Joe said Sam was trying to do the gears like he has seen him

do – held on to Joe’s shoulder with one arm and was made up when he pushed

him a round on it J

A week ago we had the chicken pox type rash for 3 days. This week we have

what looks like a measles type rash on the back of his thighs. Its different to

what we normally see eczema type wise with gut bug flare or die off. He has

been pinching today – I think it may be bacteria flare/die off – we have

been doing Biocidin for 2 weeks now. Will see how he goes and might go in with

the CS if things don’t look up. I will post a link to photo of latest rash

later.

We have not seen this many positives in such a short time since we came off

the diet with HNI 4 years ago. Whilst this might seem like small stuff to

many of you – its highly significant here and I am very excited J Even not so

observant DH is noticing stuff.

Sam is learning from his environment and imitation now for the first time

and that as you know is HUGE!

In summary, it feels like he fits in his own skin now – does that make

sense?

We have altered the NCD dose several times, backing off if it seemed too

much and worked up to 15 drops per day, x 3 in the morning and x12 in a litre

of

juice/water mix which he gets throughout the day at school. I don't plan do

to any more traditional chelation until we have updated RBC results.

We have worked up slowly on the Russian Choice stuff since beginning of June

and I am holding at 2 x 2 caps per day for now.

Looking forward to at last getting some proper testing done in August now we

have some funding from Caudwell, his EFA’s are all up the creek for sure,

probably amino’s too, trying to figure out a way to fund Yasko testing.

We’ll

be doing Megsons protocol then too, if I can ever get enough CLO into him

Mandi in UK

Mum to Sam 14.1.97, Dx 47XYY, Autism, Heavy Metal Toxicity, Possible Seizure

Disorder and Severe Cute-ness