Re: how long to know my son is responder to Nids

[Guest guest]

,

Here's our story:

My oldest son was born in July 1998. He reacted to the HepB vaccine given in

the hospital and had to be re-hospitalized within 24 hours of bringing him home.

He had a low sucking reflex and I was unable to successfully breastfeed him (and

I was suffering from terrible PPD) so he was given milk-based formula within the

first few weeks.

He was always a fussy-up-half the night-every-few-hours baby. But he loved to

be held and made eye contact.

He had frequent ear infections, on anti-biotics few months the first year of

life.

About 8 months old he got the Roseola virus.

He walked at 10 months and hit all the physical milestones the first year but

never slept through the night.

He was never a big talker, only said " mama " and " bye-bye " and such a few times.

He'd scream until I would figure out what he wanted. He'd reach for things, but

not point.

After he was a year old he self-limited his diet to crunchy and/or beige-yellow

colored foods.

(If I knew then what I know now....)

At the time he was 18-24 months I was worried. He had dark circles around his

eyes and wouldn't interact with his cousins or kids at church.

We were living in an older rental house so I had him tested for lead poisoning

and vitamin deficiency since he was such a picky eater- negative. The doctor

was not worried because he showed love and affection and made eye contact with

me. She did give him an allergy medication.

At his 3 year check-up the doctor was worried. We were sent to a neurologist

(waste of time/money for us) and in August-Sept of 2001 he went through testing

and was labeled PDD-NOS. (9/11 for me was " autism " shock.)

I wasn't pleased with the neurologist. Example-

Me: Will my son ever learn to read?

Dr.S: There is no telling what your child will or will not be able to do.

I started doing research on-line and read a LOT of books.

I changed his diet to the GFCF diet in October of 2001. He only asked for milk

the first day. I told him " Milk is bad for your tummy. It gives you a bad

tummy and a bad head. " End of story. The night time waking/screaming that had

been a part of our lives since the firs year of life stopped. He still woke up

every few hours but he wasn't screaming with what a now know to be gut pain. He

stopped dragging his head across the floor or rubbing it on the wall- something

he'd done for a year or more.

He started preschool services through our local school system in Nov 2001. His

only language was a few basic words like " cookie " , " home " , " mommy " and memorized

songs and such- scripting. He could not sit in a chair for more than a minute.

I found the list in December 2001. I followed the stories of other

families just starting out and listened to the inspiring stories (that keep

getting better) from Marcia and others.

I continued to seek more information and searched and prayed about what else to

do for my son.

I even went so far as to visit a local chiropractor who did chelation, but when

he said he'd never do it on a child because it would be too dangerous I moved on

to other ideas.

And we went to an allergist who did skin pricks on him and said since he didn't

react to milk or mold or pollen he did not need to be on allergy medicine or

restricted in his diet at all. I kept his diet GFCF but we dropped the allergy

medicine, for then.

But the list and weekly chat was always constant. Our extended family

members (included bother my son's grandmothers) have immune related

diseases/disorders such as fibromyalgia, arthritis, diabetes, Alzheimer's, etc,

so seemed logical.

After a rough/emotional summer vacation I decided to commit to the theory

and I called to make an appointment in July 2002 (my son was 4).

I also decided to switch from GFCF to the less-restrictive diet. There was

no regression.

Our appointment with Dr. Goldberg was October 1, 2002. We started with an

antifungal medication (I think that was chosen first because my son had a case

of ring-worm over the summer.) After the die-off (worsening of symptoms) the

school people noticed improvements in focus and trying to communicate more.

They were small improvements, but noticeable.

Since that initial medication, we've added (and rotated) anti-virals (those

Roseola virus HHV-6 numbers from his infant year were sky-high and are just now

getting under control/to a normal level), allergy medication, and SSRIs. And we

tried Tenex, didn't work for us. And we did a round of IMGG for about a year in

2003-4.

The gains were slow and steady, almost too small to notice at times. And we've

had rough times/regression when certain medicines didn't work for him.

But within the first two years with Dr. Goldberg my son was sitting for school

work for up to 20 minutes at a time, speaking in two words phrases, and learning

to do math/read.

My son is currently 9.5 years old. He is repeating third grade (my choice) and

has been in a regular classroom with an aide since 2nd grade. He does still

receive some one-on-one tutoring with a special ed teacher for about an hour a

day. And about 30 minutes a week with an OT and also a speech pathologist.

Education wise, he's about 6 months behind in math skills (having trouble with

multiplication/division/etc), about a year behind his reading level, and reading

comprehension is a big problem still.

Socially he seeks out his peers and interacts but his expressive language is

still about 4-5 years behind schedule. He still does a lot of scripting, which

interferes with language/social skills.

And we are still working on complete toilet training- he's having trouble with

BMs, so he still has sensory issues.

He isn't 100%, but he's WAY better than he was. Especially compared to others

with similar issues...

I have a niece and a nephew that are about 1.5 and 2.5 years older than him that

are also special needs. Both of them were listed as PDD within the year after

my son was diagnosed. The nephew has " Aspergers/ODD/ADD/bipolar/etc " and my

niece is labeled " Autistic " . Both currently have severe behavioral/anger

issues and are performing significantly lower academically than my son. They

are being treated with mind-altering medications and are given medicines that

knock them out at night so they sleep. Neither are on restrict diets.

I became pregnant in 2005 and followed Dr. Goldberg's pregnancy guidelines

(followed the diet). When Baby boy #2 was born in Nov 2005 I opted out of

the HepB vaccine- the hospital didn't push when I said my older son reacted to

it- and we've followed the alternate vaccine schedule.

I was able to breastfeed boy #2 for two years, I followed the diet the

whole time. He has only been on medication FOUR times in his life.

He's a happy, healthy chatter box. He's never had sleep/night screaming issues

and he pointed on schedule for his development.

He has been the BEST therapy for his big brother. They tickle each other and

roll on the floor together and play catch...

BIG different for my family in following /Dr. G's ideas. We've been

blessed.

- in Mobile, AL

P.S. I feel like right now.

__________________________

Reality lies beyond the horizon...

Wonderwegian

how long to know my son is responder to Nids

Hi you all!!

I like Nids and I´m very worried on how long it take to see you are in

the right track, being our big concern not to keep wasting time on his

recovering.

I know the protocol that help all is to be invented.

How long did it take to you " late responders " to see gains?

How did know you were in the right protocol for your child?

Thank you all

[Guest guest]

Hi ,

We are new to and have been following the antiviral/antifungal protocol

for 56 days. My son is already showing improvements in awareness and eye

contact. He is a viral kid and intial labs showed HHV-6 titers at 1:640. We

re-ran labs 30 days later and the titer had fallen to 1:160. Our progress is

very slow but steady and we have a long way to go.

Just wanted to offer you a newbie perspective since we haven't been at this

very long. I am sure you will receive very good feedback from more seasoned

veterans on this list. Remember treatment for each child is a unique puzzle

piece and I wish you much success on your journey.

Good luck!

Martín W <engranajes@...> wrote:

Hi you all!!

I like Nids and I´m very worried on how long it take to see you are in

the right track, being our big concern not to keep wasting time on his

recovering.

I know the protocol that help all is to be invented.

How long did it take to you " late responders " to see gains?

How did know you were in the right protocol for your child?

Thank you all

---------------------------------

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

Hi ,

We are also new to and are on day 40 of the antiviral and day

11 of the antifungal. We saw an immediate die off reaction on the

antiviral (acyclovir - our daughter tested with high titers for cmv

and hhv6) and we are just seeing the die off reaction with the

antifungal, which include loss of appetite, disrupted sleep,

diarrhea, episodes of screaming crying to laughing. It's hard but

so far we have seen some subtle results in the short time that we

have started this.

After starting the antiviral and after getting thru the die off

(mainly just an hour or two of straight inconsolable crying for a

week or so), we have seen a much happier baby. Prior, she would be

so irritable and would seem miserable and unhappy. My sister told

me that before she started the antiviral, she seemed to have more

unhappy moments, than happy moments and now that has reversed

itself. We have also been able to try to teach her more. Before

when we would try to take her hands to instruct her, she would pull

away. Now she allows us to take her hands and guide her.

As I mentioned before, we have just started the antifungal, but we

have noticed that she is more vocal. She doesn't have any words

yet, but she is making more noises more frequently. She isn't

eating very much right now, which is making me nervous, but I'm

hoping that once she gets through this, she will start to eat

again. She has also become so much more mobile. She isn't walking

yet, but is cruising and is standing so much more these days. She

is also exploring the house where as before she would be fine

hanging out in one room.

Overall, I see improvements and they are subtle. Sometimes someone

else is pointing out the improvements to me. Are other people

noticing a difference? How long has your child been on the

protocol?

HTH!