ph & Update

June 26, 2006

Hello Everyone. It has been a while since I've sent out an update. This will be

a bit on the long side, for those that would like to skip it. I've been with

this group a few years now, and every once in a while I post how things are

going, for those of you in the same shoes. My son ph is now 7 and will be 8

in August. I'm sure you could look up in the enzyme files and see the posts

titled ph updates and you'd get a history of what we've been through. ph

was fully vaccinated as a baby, he was born in 98, so he did get the Hep. B shot

right after birth. I had untreated gestational diabetes, and had suffered from

pancreatitus for many years. ph was and unfortunately is still, IgA

deficient completely. IgA can be measured at anywhere from 33-2000. ph's

level at age 3 was 7. Not measurable, and so he is IgA deficient completely,

many people are low, but it is rare to be completely IgA deficient. When I was

told this, I said to the Doctor (Dr. Stiehm, head of immunology at UCLA) " but

ph is so healthy. He's had a handful of illness' and bronchitis once, no ear

infections, no real illness, and he gets better so fast. " His reply was that

while ph is more susceptible to becoming ill, the rest of his immune system

is on overdrive, to compensate. Hence things get wiped out rather quickly. He

then sent me home with many brochures about what to expect, like Lupus, and many

other terrible auto-immune diseases that occur in these kids in their twenties.

The immune system has been on hyperdrive so long, it turns on itself. He also

answered a long standing question of mine, " why is ph's normal body temp. so

low? " ph's normal body temp. ranges from 95.6 to 96.4. Low body temp. is

indicative of long term infection. So, ph " appears " healthy, but is not.

This fits with my gut feeling, that despite what our pediatrician had been

telling me, there is a problem. Dr. Stiehm's answer/treatment is to give ph

the first of many pneumococal vaccines and to begin year round antibiotics,

ph can now only drink bottled water, and we are referred to the head of

gastroenterology, Dr. Ament at UCLA. Dr. Ament says to take ph off the GFCF

diet, tests show there is no true allergy to these foods, and he measures the

bacteria in his gut with a breath test. My son gives 7-8 vials of blood each

visit, and he now loses his appetite and much weight. Several months later we

are watching every morsel he consumes, he is constantly lethargic. I never gave

up the diet because the diet is what gave him the first formed stool in his

first 2 1/2 years of life, and allowed him to sleep through the night. Under Dr.

Stiehm's care ph now becomes ill for weeks at a time, has the first of 3

severe ear infections and melts down at the drop of a hat. We are both

miserable, and we receive the first of several Autism diagnosis. I research and

read everything I can get my hands on, I pummel the Doctors with questions, like

" why after every pneumococal vaccine does ph spike 104 and 105 temps. and

become violently ill. I'm told it's coincidence, and dismissed. Finally I demand

to see the lab benefit to all these vaccines and antibiotics, and the results of

all the labs done. Low and behold, ph now has Impaired Polysaccharide

responsiveness. He no longer responds to vaccines. God forbid there is an

anthrax or other horrid outbreak, ph would be out of luck. Not only that, he

now has osteopenia. He is so malnourished at this point that his body is

leaching nutrients from his bones. This was not the only part of his body to

suffer from the leaching. A year later we discover it also leached nutrients

from his eyes, which are rich in nutrients, hence the sideways glancing. The

cones and rods of eyes were so screwed up, that when we'd say " ph, look at

me " and he'd look at us from the side, that was because that was the only way he

could see. I stopped taking him to UCLA, they'd done enough damage. The GFCF

diet was the only thing that had helped up to that point, and 5 years ago, the

GFCF diet was very controversial and very much out of the mainstream, people

thought we were nuts. We'd been given a diagnosis of Celiac's from a doctor at

the Sansum Clinic, Dr. Liebhaber, an allergist, but without a biopsy, which I

wouldn't allow, there was no way to be sure. So, I threw around the term Celiac,

to justify to family and friends our strange diet restrictions. Having kept the

diet, and already having embarked on this path that was " alternative " , I found

Ojibwa tea. We saw Wonderful things, life became manageable, I didn't have to

count every morsel ph consumed because his appetite returned, he gained

weight, stopped getting so violently ill, and no more ear infections, he also

began playing beside other children, so I began to investigate pre-schools.

Having already received the diagnosis of Autism, I'd checked out and quickly

dismissed all the available educational opportunities in our community for

Autistic children. I then found something that held real long term

benefits/effects that had the statistics to back it up, ABA therapy. This too

was very very controversial 5 years ago. It was considered child abuse by many

in the autism and educational community. Since I would be administering it from

home, and could tailor the program to ph's needs, I stopped looking for

approval from outsiders. For the next year we had a regimen of ABA, GFCF diet,

Ojibw tea, and a Christian pre-school that had no experience with Autistic

children, but was willing to trial ph because he was so, their words " sweet

and shy, and not a behavioral problem " . Over the course of that year I saw many

improvements. My husband had been called to active duty due to the 9/11 attacks

and was gone that year. Turned out to be a blessing, because I devoted 24/7 to

my son, no one questioned me about the money I spent or rolled their eyes at the

things I was doing. Towards the end of that year we began DMG, and got amazing

speech for the first time ( my son was 3 and drooled through 15-20 bibs a day

and had no intelligible speech outside of 10 words I could understand). We began

enzymes, and my world turned on it's axel. Had I not done my research prior to

beginning enzymes, I might have done my son a grave disservice, because nothing,

and I mean nothing fully prepares you for what you can experience when you begin

enzymes. You see so many old issues come back, things you'd forgotten, potty

issues, meltdowns, self injury, lack of appetite, you name it, it comes back,

but then it goes away. What is left, is the sweet baby you came home with. The

one with the eyes that look directly at you, you hear " I wuv you " for the first

time, you have someone who wants to join you in your world, not just tolerates

you in their world occasionally, there is a peace that descends and you want the

world to just freeze the moment because you're afraid, it's been so bad, and

this is so good. We experimented with Super Nu Thera and other vitamins, but my

son was in such bad shape, he tolerated nothing. My research at that point had

led to the idea that there might be a virus or bacteria or yeast issue at work

that if we could fix that, maybe his immune system would improve. An event

happened that confirmed that, My son got bronchitis, and needed the subsequent

antibiotics, but I knew a lot more about antibiotics at this point, and I was

afraid. My son had started a probiotic called Perfect Stool, now called Perfect

Colon at the same time he'd begun the tea, but would that be enough to help him

after the antibiotics? Two days into the antibiotics we had a breakthrough, my

son and I had our first real conversation. All the things that I'd been dying to

ask him, and sort of knew, I got to ask him. We sat in my recliner, and I kept

him up till the wee hours of the morning just talking, I didn't know if this

would last, and I didn't want to let it go. His favorite color, his favorite

food, if he liked his teacher, if his tummy hurt, why he did certain things and

what they made him feel like, like needing to be upside down so often. The next

day and the subsequent days it disappeared and we got a regression, and I was

devastated. Dana, from this group suggested it could be a specific type of

bacteria, called clostridia, based on what I'd told her, and suggested

Culturelle might help. It did, and we've been using it all these years since. We

ended up seeing a Dr. Goldberg, who had an interesting theory called

and was doing the testing for CMV and other viruses that I thought might be

problems for ph. We ended up learning that ph had Herpes 6, and we took

Valtrex for a while, this was great because ph's OCD went away for the most

part. Unfortunately the med. can damage the kidneys, and we weren't seeing a

reduction in his viral levels after 6 mo., I had agreed to the Valtrex because

my research had shown that it goes after the Herpes virus only and simply

bounces around, and subsequently out of the system without attacking or damaging

other cells. However, it is hard on the body, it's excreted through the urine,

and so kidney's need to be watched. I wanted to stop the Valtrex and look into

Nystatin because yeast issues had become so problematic on the Valtrex ( no one

outside of this group had told me viral treatment can lead to an increase in

yeast problems) and 3 years ago, I'm thinking it was because not many people

outside of those in the trenches knew this fact. Dr. Goldberg wanted to increase

the Valtrex dosage and begin SSRI's. I flat out refused. I'd researched SSRI's,

not because ph was a behavior or had sleep problems, the diet had fixed the

melt downs and sleep issues, but because SSRI's were showing interesting work in

these kids with reduced blood flow in the brain. I knew ph's brain was short

circuiting because I saw so many moments of genius ( like he could put a puzzle

together face side down, without ever seeing the picture, he could program

everything computer or electrical or digital in our home, he was always taking

things apart to see how they worked, and was always asking, how does this work).

However, there were no long term studies completed on what SSRI's do to a child

under the age of 5, long term. I'd learned my lesson from the Doctors at UCLA,

they may forget their oath, but I made a promise to my son " first do no harm " .

ph was only 4 at the time. I refused, and the doctor had a fit. Proceeded to

yell and exhibit very unprofessional body language. My husband is a cop, and he

was alarmed by this guy. As we were leaving, Dr. Goldberg refused to treat my

son further. I asked the nurse as we were leaving, what are your office stats on

SSRI's, because Dr. Goldberg promised us a cure in 6 mo. with the Valtrex, and

that didn't happen, and now he's promising us SSRI's are the answer. I told her

my research had found that children and adults alike, who begin SSRI's, and then

stop them prior to a year, often end up with worse problems than they had

originally. Dr. Goldberg was telling us to use them for just 6 mo. The nurse

admitted all of his patients were still on SSRI's, who began them. That only a

couple had manage to go off of them without regression. On the drive home my

husband asked what my real motivation behind defying this Doctor, who we now

both believed to be nuts, and I said " ph's brain has shut down the blood

flow for a reason, we don't know what that reason is. The body is marvelous at

protecting itself, what if this is a protective measure to keep some bacteria or

virus or Herpes 6 (which hides effectively behind mercury) or mercury from

getting further into his brain. We don't know why his brain reduced the blood

flow, and I'm hesitant to open that back up, before I know it's safe to do so. "

Armed with the knowledge of Herpes 6, Impaired Polysaccharide responsiveness,

the eye, cone/rod issue, the osteopenia, possible Celiac's, Autism, IgA

deficiency, and possible clostridia I set out to find another doctor who would

help at least get us more labs. I found her, Dr. Megson. Like Dr. Leibhaber

at the Sansum clinic, Dr. Megson was well versed, and while she'd had her own

successes and miracles treating these children, she did not use the cookie

cutter mentality that Dr. Goldberg had tried. She didn't promise us a cure, but

told us that it had taken several years for ph to become this ill, and it

would take several years to get better. Would there be a cure, she couldn't

promise us that, but she did promise he would get better, stronger, healthier.

She too ran many labs, and the clostridia that Dana had intuited the year before

was confirmed. I had already researched and linked that to his drooling.

Clostridia has a very nasty by-product that it produces as waste if you will,

and it is ammonia. Ammonia if not scavenged properly ( which your IgA should do,

but remember ph doesn't produce any) will pickle the brain, the histamine

levels will go through the roof, and you'll see the drooling amongst other

things. Once the clostridia was confirmed we began Flagyl and other

pharmaceuticals with no success, but all was not lost. I had found that Calcium

Butyrate will scavenge the ammonia, and thus the pickling of the brain, drooling

and other side-effects would disappear. Dr. Megson found a compounding pharmacy

that would make it with no fillers, and a vegetable capsule, and it works like a

charm. Drooling is gone, and so is his Dr. Jekly and Mr. Hyde act. ph could

go from sweet to contrary on a dime. He didn't do it in public, but he would do

it at home, and it had kept us from many a holiday, many a vacation, many an

event. We waited for that calcium butyrate, and it arrived the morning we had

planned to take ph to the snow. We had just decided to cancel the trip

because ph had done his flip ( you'd swear he was bipolar), and within an

hour of giving him his Calcium butyrate, he was fine, and has been ever since.

Sure, he gets weepy and contrary when the yeast is flaring, but it's nothing

like what it was. The drooling is still gone all these years later. We began

many supplements with Dr. Megson, some worked, some we would have to try 10

different brands before we found one that worked, we had to take our diet down

to chicken, pork, rice and water for a few weeks, with only salt and pepper to

flavor as we began to filter back in foods that ph would tolerate.

Discovered BHT and other preservatives were to be avoided at all costs. We see a

Vision Therapist and eye doctor ( Irlen lenses have allowed ph to keep up in

school, combined with a tiltboard. ph literally does not see black on white,

so his glasses allow him to read, etc.) The biggest thing to happen was that so

much progress was made, and I was finally able to balance out the supplements,

ph was mainstreamed into kindergarten, and caught up in so many areas, to

look at him, you'd never know he has autism. In a restaurant, at the show, at

school, the special ed. advisors always have to ask the teacher which one ph

is the first time they meet him, because they can't tell. In fact his shadow,

which we requested, ended up shadowing another child instead of ph for a

majority of the school year. Are things perfect, no. But, things were so good,

we decided, after much thinking to have another child. Her name is . Things

were so different this time around armed with all the knowledge we'd acquired.

I'd spent a lot of time cleaning up my own body, did so many thing differently

with her than I did with ph, and as a consequence, we fended off colic,

yeast issue and eczema. just had her 18 mo. checkup. She is right on

target. For all the physical, cognitive and motor milestones, she is right where

she needs to be, or a little ahead. After getting through nursing and yeast

issues, after understanding she can't handle sugar at all, and getting through

her first DTaP vaccine ( she did regress in sleep, eating and behaviors for 3

weeks after), she is now back to normal. She just had her 2nd DTaP vaccine,

didn't lose her appetite at all this time, sleep patterns have stayed normal

(this is 4 days out now) and skin is still beautiful. Behaviorally she is

typical, screams when she is frustrated, but easily consoled, wakes up happy

again, no more self injury ( she was biting herself and others after that first

vaccine shot). I am so amazed by her. The really good part though, we had her

IgA benchmarked prior to her vaccines, we then took it the day before her second

vaccine, her IgA has actually gone up like it is supposed to. Her labs show her

to be well nourished and right on target. I expressed 14 mo. worth of breast

milk for ph and had several labs done for him also. So far the IgA test is

the only one back, and it shows him at 5. He was at 7 years ago, so now he has

even less. But, his temperature, which was low for all those years, finally

crept up to 98.6 when I began giving him the breastmilk, which I stopped

producing 4 mo. ago. His temp. is now still a Wonderful 98.3 - 98.7. Whatever

benefit to his immune system the breastmilk gave him, that boosted his

temperature, his immune system is hanging onto it. He caught bronchitis again

this past couple of weeks, and it went from a cough only at night, to his temp.

dropping to the 97.7 range. I had been taking him to the Doctor every couple of

days to monitor the cough. Although the cough seemed to disappear, the 97.7

temp. worried me, it meant that illness had lodged itself in him, and sure

enough, at this last visit he had bronchitis. Two weeks of Augmenten and he no

longer has any signs of illness and his temp. is 98.3. I don't know what the

breastmilk did, but it did something. Dr. Megson and I are waiting for all the

labs to come in, prior to our phone consult, but I am hopeful. His IgA may not

have been affected, but he did benefit from the breastmilk. I am sorry if I

bored anyone, but I did promise an update on ph's labs, and an update on

. She's doing Great guys. I'm always watching for tip toe walking,

spinning, she does have a stim, she runs in circles but there has been no

regression in motor skills, and her language is still exploding. ph was

promoted to First Grade, and we are very excited. No word from the Mind

Institute yet, we are still waiting. This group has been a God send, literally,

my family would never have come this far without it. Who else is up at 2 am.

commiserating about every sheet in the house being covered in pee as you're

acclimating to enzymes or going through a yeast issue. Who else knows you'd like

to kneecap a family member who gave your kid a food they shouldn't have and now

your kids has the runs and is vomiting in the bathroom. Where else will you get

the tips, like yeast flares with viral treatment, and Epsom salts and baking

soda in the bathwater. Thank You everybody, and Thank You for this group,

and Thank You Dana for cataloging everything so neatly and completely.

June 27, 2006

Alica,

I responded to your post last night but some of my messages simply

aren't getting through.

Thanks so much for this update. I thought I'd read pretty much

every story already but yours is an incredible one that blew me

away. I learned much reading it. Already looking forward to the

next one.

Congratulations on the successes of both your kids :-)!

Anita

>

> Thank You for this group, and Thank You Dana for cataloging

everything so neatly and completely.

>

June 27, 2006

I am a new member but just wanted to say your note made me cry and I feel very

blessed to be a member of this group.

God Bless

ph & Update

Hello Everyone. It has been a while since I've sent out an update. This will

be a bit on the long side, for those that would like to skip it. I've been with