, WOW!! Thank you!!! :) Re: ph & Update

[Guest guest]

Hi ,

I enjoyed reading your " novel " and look forward to your next one!!

The way that you expressed yourself in writing down your amazing

journey hit upon a whole range of emotions that a good novel writer

would bring out. Have you considered writing a book?!

I'd be interested in hearing updates when you hear back from Dr.

Megson. She's our DAN! doc too. She's wonderful!!

What incredible experiences you and your family have endured

(children, medical, research, recovery, and military duty-wise).

I wish you and your family happiness, safety, and good health into

the future...

Gretchen

>

> 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.

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