desperately needing advice

[Guest guest]

Hello,

I have not posted for a long time. Perhaps some of you

remember me: I am

*Agnes in Hungary*, the

mother of a 13-yo non speaking autistic boy in Budapest. We

are on the gfcf

diet for about a year, and have been doing the Megson protocol

too. First my son

showed very good results: became much more quiet, his tantrums

almost

disappeared; he began to watch TV, his appetite improved, he

gained weight and

became more sociable.

We were able to reduce and then stop his Haloperidol

/Haldol/, which he had been taking for 6 years.

He has been taking different

nutrients too, by the advice of Willis Langford, and other

sources.

Then a sad event happened in the family: Lawrence,s

grandfather died 5

months ago. There was a very close connection between them

since his first

year of life. They met 2 times every week, and loved each

other very much.

My father helped me very much with Lawrence and our life

became very

hard without him.

Lawrence is in severe depression since the death of his

grandfather. He sleeps

too much: 12 hours or more almost every day. When this began

/actually

some weeks before the death of his grandfather/ I thought his

Haldol was no

more necessary because of his therapies. I started to reduce

the dose and then

stop it. The reducing took place in about 6 weeks -- 2 months,

from 40 drops

to 10 drops/day. Then I slowed down, and later continued to

give him 2 /!/

drops per day for 3 more months. We became Haldol free 2 weeks

ago.

When reducing it, serious movement disorders/difficulties

began with my

son: he became very slow and could not well coordinate his

movements. It

was never characteristic for him; there have never been big

problems with his

great or fine motor abilities. Just the opposite: he could do

very sophisticated

movements with his hands and fingers, and was very skilled in

playing with

small toys, e.g. Lego pieces. That is why I slowed down the

reducing,

thinking that it was Tardive Dyskinesia.

First, when I thought that it was Tardyve Dyskinesia, I

consulted with a

psychiatrist friend /he did not see my son, though/. His

opinion was that it

was rather some Parkinsonism, due to the Haldol itself. /He is

not a child

psychiatrist, but he has a very severely autistic daughter./

Our child psychiatrist, who has been giving us the Haldol

prescriptions for 6

years now, became very angry when I mentioned my suspicion of

TD. I

think she was angry because I did not discuss the gfcf diet

and the Haldol

reducing with her. But everything happened so quickly, and it

is so hard to

contact her even by phone, and she always had so very few time

for us... And

I know she thinks that autistic children are hopeless.

She suggested us to go to another psychiatrist -- just when we

were in

trouble, and in the danger of Tardyve Dyskinesia!

She also told me that they are so busy that she could give me

an appointment

date only for two months later.

I am afraid to go to a doctor, the Hungarian doctors are not

familiar with the

new methods - gfcf diet, nutrients, FC -; not even the old

ones... I am sure

they would tell me to stop the diet and the nutrients, because

they have no

knowledge about them, and it is easy to put the blame on

something they do

not know. I do not want to give new medicines to my son - he

is still taking

his SSRI, and I would happily reduce or stop that too.

The appetite of my son is very bad, and his great and fine

motor problems

are fluctuating - sometimes very bad, sometimes better. His

muscle tone

seems very low sometimes, and he has difficulties in eating

and walking.

Perhaps he needs a cholinerg - I gave him Bethanechol in the

past months,

but we run out of it at the beginning of the summer, and there

is no hope for

a new supply at present.

This whole movement problem reminds me to those of Sue Rubin,

who

writes that she has great difficulties in coordinating her

movements,

especially when in emotional stress or when tired.

We also made some diet infringements in the summer, when we

were on a

long holiday and it was hard to get the proper food for

Lawrence. His bad

conditions seem to be in connection with the infringements,

and also with the

mood in the family, which is not the best nowadays. /My

husband is not

enthusiastic about the diet./

What worries me most, is the movement coordination problem --

we actually

have to help him take the spoon to his mouth sometimes --, and

the amount

of his sleep. He is able to sleep even 14 hours a day. I

hardly could take him

to school in the last semester, because he wakes up at noon or

later. To tell

the truth, he was hardly out of the flat /in summer out of the

garden/ for the

past 5 months. Not that it was a really bad thing for ME,

because I am extremely tired and needed that break, but I am

worrying because of HIM

and his education./

In this school year, I decided to wake him up and try to take

him to school.

Not that it will be easy for me...

My questions are:

1. What do you think about waking him up? Is it better for him

to *sleep

out* his grief, or is it necessary to wake him up and give him

new

impressions and pleasures?

2. What do you think of his movement coordination problems?

What can be

the causes?

a/ Haldol reducing

b/ Haldol overuse -- 6 years

c/ emotional causes /grief, family problems/

d/ diet infringements

e/ too much anticholinergics in his diet and nutrients

f/ All these together /most probably.../

Oh, he also lose one of his friends, a social worker boy who

was dismissed

from his job. Lawrence liked him very much and they spent

together much

time.

And he became a teenager this spring... Adolescence

problems... This is such

a complicated story...

Please help me solve this puzzle. Every input and idea is

greatly appreciated.

Thank you.

Agnes in Hungary

(Lawrence, 13,5, non speaking autistic, Maurice, 10, NT,

little math prof,

, husband, 64, physycyst.)