Day 55 of GFCF - England

[Guest guest]

We started our precious daughter Nicola, who is two and a half, on the GFCF

diet 55 days ago. It

has been very up and down process. It is very complicated to try and

understand all the information on

food intolerances, phenols, foods that are known to cause difficulties for

affected children..etc. Plus

she is a very picky eater and we are presently at the stage where she is only

accepting carbohydrates.

Sugar and refined sugars have also presented a problem. We are just about to

commence a course of

Nystatin, which is being supervised by the one and only doctor we have come

across so far in England who

has been prepared to support us.

The good news is that, after a truly horrendous withdrawal period of 14 days she

is slowly improving... eye

contact is the one thing that we have mainly noticed, she is not screaming at

night any more, she is doing

one or two poohs a day (previously constipated ) we have also used lactulose 2.5

mls to assist and on

some days she has done three or four really big poohs! She is not jumping up

and down flapping her arms,

giggly and then crying for no apparent reason. She used to also go upto our

bedroom and jump up and down

in front of our bedroom wall with a hazy flowery print on the wall paper,

giggling and flapping her arms. She

no longer does this. The red blotchy marks on her legs are clearing up and she

is beginning to follow some

very basic instructions. Nicola is also coming in and out of the house without

major tandrums.

She is still very much in a world of her own most of the time. She still needs

to stand on every drain going

down the street she still empties toys in and out of buckets and she still

inspects toys... but we are changing lots

of things in her physical environment to reduce these things and she is coping

well with this. She has even

started dancing to Tom ... with eye contact!!

Just reading all your messages has been so inspiring and it has really helped to

not feel so alone. Even if

all of you do seem to be in America (any one in England doing this??). Also is

there any dads out there who

can offer a few words of support and encouragement to my wonderful husband

who has worked so

hard to get any response from his precious baby girl.. So far three hugs in the

past year. It does seem to be

mums all the time and I wonder some times what the dads feel and how they cope.

Anyway we start the nystatin next week which we have some reservations about but

really believe she has

a fungal problem (big time). We are also thinking about rotation diet

(difficult to rotate what she eats at the

moment.. but who knows). and I am also interested in supplements/probiotics but

we will introduce these

gradually as we did try her on a product called Super Nu thera liquid which

knocked her for six...

Any advice or thoughts welcome. Thank you. Janet