Update: lectins, regression, etc

[Guest guest]

Listmates,

I wrote this a couple days ago, and wasn't planning on posting it for

a bit, but after reading Sathya's post, I decided to post this

version. I hope it may be of some help to someone. It is very long,

but I left out a great deal, so if anyone has questions, I'd be glad

to answer them.

Anita

Some of you may know a bit of my son's history, but for those who

don't: My son regressed noticeably at around 20 months following a

flu vaccination although in retrospect he was already starting to

struggle somewhat right after an MMR given immediately after a severe

bout of chicken pox. At 24 months, we went GFCF with startling

positive results. The change was so significant I was sure he would

no longer be autistic after a few months of such progress; however,

within a couple months he started losing gains. Making changes such

as removing rice, potatoes, etc didn't seem to help and eventually we

left GFCF and started using enzymes instead. Over the last two years

we've tried many interventions, some with success, but in spite of 50

rounds of chelation, the pattern has been hard-won gains (such as

with viral protocol or HBOT) followed by slow regression. In

December, we were at the lowest point we had been. My son was even

somewhat worse than his lowest point following his initial

regression. Self-injuring behaviour had returned. He barely

communicated in any manner. He was desperately unhappy. I scored an

ATEC for him and it was 161.

On January 1, 2007 I started supporting my son's adrenals properly.

We saw some nice improvements within the week. He no longer covered

his ears and screamed when someone other than me entered the room,

for example. After three weeks of small but much appreciated

improvements I started MB12 injections. We had used huge amounts of

oral in the past without impact. Over the course of four weeks, we

continued to see small improvements. A long lost word here and

there. A few smiles. Obsession with movie credits diminished. A

willingness to go outside.

At that point (7 weeks into adrenal support, 4 weeks into MB12 shots)

I introduced Lectin Lock. Our listmate René had given me

information regarding lectins and their ability to do harm (see

lectins_in_autism/). A lot of

what I read sounded just like my son. Lectin research seemed a

possible answer to the question of why had my son done so well

initially on GFCF and then started regressing again. Perhaps the

regression could be explained by the high lectin content in foods I

introduced in an effort to make GFCF more healthy—foods like

buckwheat, garbanzo bean flour, pea protein, tomatoes, peanuts, etc.

We have now been using Lectin Lock for 5 weeks. My son continues to

improve. I scored an ATEC for him a few days ago and the result was

110. He dropped 51 points in 3 months. I realize that there is no

way of knowing which of the three main interventions I have tried are

responsible. But, my best guess is telling me that it is all

three. Some of the changes we have seen: he has started to drag

his brother and sister in the bedroom to play his favourite jumping

game; after working on signing " more " for months and months, he

suddenly has started signing it unprompted and appropriately, he

wants to go outside to play, he laughs and not just when he's yeasty,

he will gesture that he wants you to pick him up and then he'll

sometimes put his arms around your neck when you hold him. He even

tried to play a game of chase with some other kids once at a play

park.

If lectins are implicated in the terrible state of my son's gut, then

the damage has been ongoing for quite some time. I expect it will

take quite some time to fix. My son's nutritional status was quite

poor according to tests and we haven't had much luck at all improving

his autistic symptoms using supplements (in fact, I believe that part

of my son's ongoing regression has been a result of his nutritional

status becoming worse and worse, in spite of interventions). I plan

on continuing to use the lectin lock and watching for signs of

improved nutritional status and if $ are there running another test

on it. I have also added, as suggested by VRP (who developed Lectin

Lock), Larch Arabinogalactan to try to help heal his gut.

I wish I could tell people with more certainty what, if anything,

Lectin Lock has done for my son. I believe it is doing something,

but I realize that it could simply be the NAG somehow helping to heal

his gut in some small way. I plan to continue Lectin Lock (as well

as the adrenal support and the MB12 shots) for quite some time. I

will post more as I learn more about what, if anything, trying to

deal with the lectins in my son's diet has done for his health but I

wanted to share my incomplete information now in the hope that it may

benefit someone else's child.