Your helpful input on a lingering issue

[Guest guest]

Hi Everyone,

Our 3 year old son is continuing to make " miraculous " strides since

starting the protocol and seeing Dr. G. The diet (specifically

getting rid of dairy was the most dramatic.) His speech/language has

been the most positively affected. He went from being completely non-

verbal (12/02)with minimal gestures prior to the diet. Now, he is

using 3 and 4 word sentences and his language is unfolding at a rapid

pace with appropriate sequences. The OTs have also been amazed by

his dramatic improvements in motor planning and decreased sensory

problems.

However, two issues are still very much a part of our struggles with

our son and our hopes of helping him " blend " with other children and

eventually be " indistinquishable " from his peers by kindergarten.

Moreover, these two continued symptoms are what lead others (the

school district and school psychologist)to label him as PDD.NOS OR

ASPERGERS. They don't believe in so we don't even bother to try

to explain that our son's symptoms " look like ASD but are actually

neurologically/medically based.

SYMPTOMS THAT CONTINUE TO HOLD FAST

1. An " obession " with letters/numbers. He has always loved them and

prior to talking would point them out throughout his day. Now that

he is speaking---he not only talks about them, but can now spell most

words and is doing some " site " reading. He also has gone from liking

me to write numbers and letters for him---to tracing them and now

writing them " free-hand. " The other day he said the entire alphabet

backwards without pausing a moments!!!! Sure, we could feel proud of

these advanced skills. It is very reassuring to know that beneath

the fog of ---he is a very smart little boy. Yet, his

continuous " perserverations " on these topics make him

further " standout " and impact his ability to relate/socialize.

He seems to be a kid who sees the " trees but not the forest " as he

moves through his day. He focuses too much on what he doesn't need

to (too many details) and not enough on what he should. An example---

when he enters his preschool class---he'll smile at the other

children if they come up to him---and say " hi " with some prompting,

but then will comment on the color of their shirt or immediately go

over to the number puzzle or ABC poster on the wall. If you talk to

him about these subjects he is very engaging with you---but has to be

redirected to pursue other activities.

2. Social Impairment with his peers. Our son is very funny, friendly

and interactive with adults. He makes fairly good eye contact and

has joint attention (this is one of the reasons that some clinical

professionals were not able to stick an Autism diagnosis on him).

Yet, with his peers---he still makes little to no initiation of

contact and tends to stay to himself. He will acknowledge the other

kids in his class and tells us their names. He will also look over

at them and comment on what they are doing in class. Yet, he does

not " take them into his world " as he should. His speech therapist

seems to think that the year or so that he was essentially non-verbal

led to his being socially immature and he does not have the skills

yet to take his big vocabulary and apply it to social communication.

She has hopes that he can learn the social give and take of language

once he gets more practice under his belt. She reminds us that he

has only been speaking since April and just because he can say the

words " aquamarine, parrallelogram and consonants " does not mean he

has mastered what it takes to have conversations typical of normal 3

years old children.

He is currently on Famvir and it does seem to have made an impact.

The Valtrex didn't seem to have any impact. However, it is honestly

hard for us to ascertain and tell Dr. G. whether it is the meds,

therapy, and/or the brain healing due to the diet changes that is

making the most change in him. Dr. G. wants us to start on Nizorel

as well---we are going to do this next month.

If any of you have any input about these two symptoms/issues we would

greatly appreciate it. We have heard two schools of thought on the

perseverative stuff and aren't sure which is the way to go.

1. Take away his " obessive " fixations (toys) and do not give any

attention to these topics.(Behavioral) Of course, letters and numbers

are everywhere and we don't want to make them " bad " because he will

have to deal with them in school.

2. Join him in the fixation---but use it to challenge him and make

him interact with you around it (Floortime model).

Also---we would love to hear from other parents who have

children with " fixations. "

The Leahys