ph Update

[Guest guest]

For those that don't know about ph, I'm repeating a few things. I've broken

it up into chronological order, so if you do know about ph and you want, you

can skip to the end.

Something's Wrong

At age four months I began to worry. My son's growth seemed delayed. We were

given prescription vitamins and told he had colic. By fourteen months he was on

the extreme tail end of the scale of normal development, but still on the scale.

However, as we introduced more and more solid foods to our sons' diet, we saw

changes in ph that often left my husband and myself speechless. Hand

flapping, tip toe walking, spinning for abnormally long periods of time,

screaming for 3-4 hours for no reason we could discern, had to adhere rigidly to

routine, limited babbling, head banging, chronic diarrhea ( not once had stool

been formed), drooling profusely, no eye contact, unbelievable tolerance to pain

and aversion to touch. These things happened gradually, and so of course between

the family reassurances he was fine, just a late bloomer as boys are wont to be,

and the pediatrician reassurances, well we just said he was, " on his own

program " . However, this combined with his only 3-4 hours sleep each night, and

he'd quit taking naps at this point. Well, we were exhausted and worried. It's

hard to decide what approach to take, when you not only don't know what's wrong,

but everyone keeps reassuring " nothing is wrong " . My in-laws kept telling us to

just spank him, that'll bring him around.

Searching

I'm refusing to accept what everyone is saying. I'm with this child 24/7.

Something is wrong. Maybe it's me. Just a little bit of reading and I'm thinking

" Autism " . I was fortunate to come across an article in Parents magazine that

contained a story about a little boy who was diagnosed Autistic, but his parents

traced it to a gluten and casein intolerance. The little boy was now considered

Neurotypical, just a few minor speech issues. Within that same week our

Newspaper printed a story about our local Autism Center receiving a grant to

test 75 Autistic children for this intolerance. They accepted ph as a

candidate for this research project. I begin the GFCF diet immediately after we

submit our urine test. Within one week of the diet, ph was sleeping through

the night ( 10 hours). ph is now 2, and I am trying desperately to convince

everyone of what I suspect, my Husband and I are fighting something awful now. I

begin ABA therapy, during which time I appease my husband and pediatrician with

a hearing test, neurologist's visit and contacting our Kern Regional Center. The

results come back high for both gluten and casein intolerance. We already see

him responding to the diet, he answers to his name, he waves bye-bye, but there

is no language. He had 20 words at one point. At some point they are no longer

heard. When did that happen?

Progress

ph is several months into ABA, and I want to start speech and occupational

therapy. The diet is a no brainer, it helps, and ph now displays the four

developmental markers that Dr.s Azrin and Fox require to potty train a mentally

retarded individual. ph is potty trained in 2 days. Several things happen at

once. His first poo in the potty chair is formed. Solid. This is a first for

him. Not only that, his second poo, is at 2am, he comes to get me, get Me? Can

you believe that? This is a child who barely acknowledges my existence.

Searching Again

He's made such beautiful progress, but I want more. What happened? What caused

this? Our school district does an assessment with their team, on Sept. 11, 2001

we get the news, Autistic. We cry as we watch the planes crash into the twin

towers. I want answers. I'm not happy with what the district has to offer, so we

set up private speech and I begin looking for a private pre-school. ph

doesn't talk, doesn't want to be touched, likes to be alone, lights bother him,

sounds bother him all of a sudden, he twirls, is obsessive compulsive and has

some rather nasty tantrums, we begin calling them meltdowns. Four doctors later

we end up at the Sansum Clinic in Santa Barbara California. Here we go, Dr.

Liebhaber listens to me, looks at all the labs I've presented to him from all

the different Doctors and says to me, " how is it you don't know what is wrong

with your son? " I cry. I know something is wrong physically, and now a Doctor is

agreeing with me. He says we need to put a medic alert bracelet on him and get

him in to see an immunologist and gastroenterologist at UCLA. He is IgA

deficient completely, doesn't seem to have that part of his immune system

working at all, and suspects Celiac's disease.

Age 3.

It's close to Christmas and we go to UCLA, between all the specialists, we are

going 2 times a month. By the time they are done with him, he is on year round

antibiotics and receiving vaccines every month. The gastroenterologist tells me

to reintroduce some foods, and quit with the vitamins. In the following 8 months

ph has 2 bouts of bronchitis, tonsillitis twice and 3 colds/viruses that

last 2 weeks to 2 months to kick, plus 2 ear infections. I'm condescended to and

yelled at for continuing my own research. They tell me not to worry about the

autoimmune diseases that can result from the rest of his immune system being on

hyper drive for so long.

Age 4

I'm done. ph is down to 34 pounds. We've not done ABA in two months,

pre-school is rare, meltdowns and stimming behaviors have increased. Drooling

disappeared for a short while, now has returned. We have a new problem, he bites

himself. Eczema disappeared after the GFCF diet, now it's back. ph is

reacting to all foods now, and we are down to chicken, pork, potatoes, water and

salt and pepper as spices. He's sleeping only 3-4 hours a night again, and my

husband is gone. He has been called to active duty due to the Sept. 11 attacks.

I'm on my own. I get a phone call from UCLA, ph now has what is called

impaired poly sacchari response. He is not holding titers to any vaccines now.

My research, and newfound freedom ( husband out of state) lead me to a new path.

I begin Ojibwa Tea, probiotics and DMG. ph begins talking in two word

phrases and is gaining weight. Dark circles under the eyes disappear and he

kicks a cold in 4 days flat. ph starts to sleep through the night again.

January comes and I'm ready. Ready to start enzymes. It is 2 months of hell. I

tell my Mom, and Aunts to understand I'm doing a sort of detox if you will, and

ph is going through this sort of die-off, withdrawal thing. ph pee's the

bed, bites and hits me, has nightmares, rages and laughs for no reason I can

discern. I'm tired, but I go through my journals and realize this is everything

I faced 2 years ago prior to the diet.

Adjustment ends.

ph has adjusted to all three enzymes. He is talking in sentences and the

speech pathologist is floored. He has lost his rigid adherence to routine, and

is engaging the children in his pre-school to play (this part really began after

the Ojibwa Tea). The eczema clears up and he isn't sickly anymore. I quit

counting every crumb he consumes. His food repertoire opens up to include all

things allowed on the GFCF diet. We challenge with oats and it's no problem. I'm

excited. He is catching up so fast that my daily routine of ABA can't keep up.

He goes to pre-school every day now. My husband returns home to a little boy who

says, " I love you " . I'm tired, but happy. There's still a problem.

What Happened?

I know from my research that there is a viral/bacterial/yeast/fungus problem at

the heart of his delays and pain. I treat for yeast with GSE and see phenomenal

improvement, and then 2 weeks later, the irrational anger is back and I know the

yeast is back. I'm looking for a Doctor that will help me uncover what is at the

heart of this.

Dr. Goldberg

I find this doctor who treats a disease he calls . We go, he tells us, " if

your son has what I think he has, I can cure him " . I ask for a timeframe,

knowing everything takes years, and ph is close to being 5. Doctor Goldberg

says, " 4-6 months " . I ask about future children, (we'd been told not to have

anymore, as the next child's immune system could be even more dysfunctional, and

the odds for an Autistic child increase once you have a child already

diagnosed.) Doctor Goldberg tells us not to worry. Yes, we can have more

children, and no they won't have this particular set of problems. ph's

disease was acquired, not genetic, and so it can be avoided with future

children. Turns out ph does have a virus called HHV6. Most people show a

past exposure, ph has high active levels. We begin treatment with Valtrex,

the last of my son's obsessive compulsiveness disappears ( if he misses a step

on his ladder on his way to the top bunk bed, he'd have to go to the floor and

start all over again). A daily multitude of things like this, sort of made him

stand out from his classmates. His fine and gross motor skills improve, he can

catch and hit a ball with a bat. His memory improves. His eyesight gets worse.

I ask what to do about yeast/fungus. I've researched a great deal, and I want

off this yeast roller coaster. Doctor Goldber prescribes Nizoral. I research

this med for 10 days before I get it filled. The second day on this ph

vomits and shows several of the warning signs/side effects to look for. I call

Dr. Goldberg. He says it's coincidental. We have ph take this med. for 1

month. He gets an ear infection and sore throat that just won't go away. I've

managed to avoid antibiotics for almost a year at this point, now it's necessary

to use Augmenten, it doesn't work. We run out of Nizoral, and go back to

Goldberg for a follow up. Labs show virus is still just as active, and this

Nizoral really took a toll on ph. It's been 4 months, I ask Doctor Goldberg

what is the problem, and I don't want to continue the Nizoral. I get yelled at.

It's unbelievable, we leave and I'm heartbroken. Not only will Dr. Goldberg not

prescribe a different antifungal, but he wants to start SSRI's. The nurses

confess most of his patients require these meds. for years. Dr. Goldberg just

had high hopes for ph.

Home Again

I don't refill the Nizoral, but I treat with GSE for 4 days every time I see

evidence of a yeast problem, which is about once every 3 weeks, and I begin

Culturelle. ph becomes constipated, so we use PFS probiotic combined with

Culturelle. Now, back in Sept, back when we were 3 or 4 days into the Augmenten,

I had a conversation with my son. A conversation. It was our first. I kept him

up till 11pm, he fell asleep in my arms. I asked him what his favorite color

was, his favorite food, all the things I thought I'd learned through deduction,

but could never ask, because it was an abstract, and he didn't understand. We

had that for 2 days. It disappeared. In fact he regressed in his abilities

across the board shortly after that Antibiotic treatment. Now the conversations

are back. We have them every day. About everything. He lies to me now, he has a

friend. A real friend, her name is Jordan. He got into trouble at school a

couple of days ago, he and a little boy named devised this game about

scary ducks and it got a little out of hand. I love it.

November 11.

I'm dreading it, but we have to go back to see Dr. Goldberg. In my fantasy, he

agrees the Nizoral created an environment in ph that allowed the bacteria to

get out of hand, the brief improvement on the antibiotic was reflective of this,

but the Culturelle seems to have proved this point. The Nizoral is no longer an

issue, we'll use Nystatin or Oil of Oregano. And we'll use amino acids, full

spectrum lights, evening primrose oil, etc. to increase the available serotonin,

not SSRI's.

The reality is he yelled for the entire visit. There was no discussion. The

nurses not only closed the door to our room, but the door to the lobby as well.

He refused to treat ph any longer, said I did more harm than good, he said I

wasn't a doctor, he said I hampered his efforts, said I had to agree to do what

he said or that was it. I asked where the hell my cure was. He yelled about

funding and what not. I said that wasn't my problem. I said he didn't even know

for sure what type of yeast/fungus was the problem, so how could he know I made

it worse. I said all the Doctors before him told me to trust them blindly as

well, I told him I would not. I told him I know ph better than he does,

despite not being a doctor. I told him that it was disheartening to realize his

ego was bigger than his compassion for ph and that all I wanted were copies

of ph's chart. He said he wanted to treat ph, but needed my cooperation,

and by the way did I purchase his videos? I said I would check them out, but not

buy them. He said he wouldn't charge us for the visit, and to buy the videos and

then call him if we still wanted him to treat ph. I said, " no more Nizoral?

he said, " no, we can try Diflucan " . My husband bought the videos. We've yet to

watch them. We are waiting for our appt. in Virginia with Dr. Megson. We have

more answers now than we did a year ago. Onwards and upwards. ph is a

beautiful 45 pounds, the nurse examined his ears with this instrument while we

were waiting, ears all clear. When we correct ph, he says, " I think... " I

quit cleaning with comet a couple of days ago, and the drooling is gone again.

There's a lot of work to be done still, but this little boy has friends, knows

his parents love him, isn't frustrated as much, because he is discovering he can

do so much more, has conversations with me, his friends, and amongst his toys.

I'm blessed. I still want more. We've still not licked this viral thing (my goal

is to give his immune system enough of a boost that it can kick it/ build it's

own antibody to it). Kick the bacterial and yeast/fungus thing, I am neck deep

in amino acid research, got to heal that gut lining and get things in balance.

His eyes are still an issue. He has 20/20 vision, but can't sustain focus. We

see Dr. Megson Dec. 5. I'll update then.