Email I just sent off to the Nutritionist....

We saw Dr Kand Ann last week, and he specifically suggested I email you for some help. I have 2 issues that I could use some help with...

1. We did a NeuroScience Adrenal and Neurotransmitter test. Results came back with Adrenals very fatigued (pretty much flatlining throughtout the day) and the neurotransmitters out of whack as follows

High:
Epinephrine (normal 7-12, his was 24)
Norepinephrine (normal 30-45, his was 135)
Dopamine (normal 115-175, his was 727)
Serotonin (normal 120-185, his was 349)
Glycine (normal 455-980, his was 1858)
Glutamate (normal 15-32, his was 154)
Histame (normal 14-24, his was 44.6)

GABA, Creatinine, and PEA were the only ones that came within normal ranges.

So Dr K started Dominic on Adreset for his adrenals (side effects
so far - a full capsule resulted in ridiculously high energies and
insomnia. We cut it to 1/4 capsule the second day. Then he is going
to have a start a bunch of Neuroscience products one at a time over
the next couple of weeks: Avipaxin, Kavinace, and EndoTrax.
Can you comment on the test results, and help me understand why using
these particular (expensive) sup's will help in the long run?

2. We're really starting to struggle with ongoing expenses for
Dominic (supplements, HBOT, and ABA therapy), and our monthly
supplement cost is now up to $620 (total of 32 daily supplements).
We need to look at ways to reduce that. The most expensive per month
supplements are the Therabiotic at $35/mo and the Oxicell Glutathione
cream at $50/mo.

I've had some people suggest that we look into fermenting our own
(water based) Kefir grains to replace some (or all) of the probiotics
he takes. I've had others suggest we make our own yogurt. (Dominic
doens't like yogurt, so i'm thinking thats out). What is your take
on us replacing one dose per day of probiotic with a homemade Kefir
drink (using cultures from this webpage, the waterbased ones not milk
based -http://www.culturesforhealth.com/. Frankly $17 once for a
culture that will last indefinitely is FAR preferable to the $35/mo
for Therabiotic.

For glutathione, we need a cheaper option. What kind of dosage would
you use for a 50lb boy (of the capsules) and do you have a brand
preference?

Its an awfully good thing i'm proficient with spreadsheets

Because I have no idea how I'd keep track of all of this stuff otherwise. We are keeping a daily log of am focus, am energy, pm focus, pm energy, poop, sleep, extra stims, and mood. If I'm really productive I'll graph it after we've got everything integrated in....

So, we're 4 days into the first new supplement from last week's Dr appointment. Adreset. Dr K told us the dosage would be 1 capsule in the morning. On Saturday, I gave him his first capsule. WOW. If we thought he was a high energy kid before, we were WRONG. He wasn't hyperactive, really, he was just REALLY REALLY busy. His speed was FAST. He spent a couple of hours outside running, and then ran inside.

Oh. And he didn't go to sleep until almost midnight. The kid who goes to sleep at 7pm every night.

So, Sunday he got 1/4 of a capsule. (imagine that). The energy was still high, but at least he slept. We've stayed at 1/4 capsule, and we might go up to 1/2 a capsule this weekend. Maybe. We'll see. Not a big fan of the not going to sleep part.

I've got D11 and Alpine tracking his energy level and his focus. Monday's energy was higher than today, but todays focus was higher than Monday.

The other noticable side effect is he's Sensitive. As in bursting into tears for no reason. Today, Alpine told him not to put his tokens in his pocket, and he started to cry and said "Sad". Which is cute in an AWWWWW sort of way, but he's been such a happy kid that I really hope its a transient effect. Either that or he's hit a moody part of his development....

Dr Kucera followup

My brain is mushy, but the short version is Dominic's got some adrenal fatigue going on, and corresponding high levels of neurotransmitters. We've got a handful of new supplements to phase in.

Dr Kucera was thrilled with the verbal jump, and we're checking Dominic's vitamin A levels to see if we want to do the 3 day mega-dose vit A protocol for measles titers.

After we get all the neurotransmitter and adrenal sup's added in, we are cleared to trial evening primrose oil/grapeseed and carnosine.

fun times.

edited to add:
I am looking at a lab report for Dominic in which a HUGE number of neurotransmitters are elevated significantly. We're adding supplements recommended by the lab (Neuroscience is the lab name, and the sup's are their brands - imagine that). I'm in territory I'm just not fluent in here.... Our first step w/supplements is to support the adrenals... then we move into all these Neuroscience ones.

Epinephrine (normal 7-12, his was 24)
Norepinephrine (normal 30-45, his was 135)
Dopamine (normal 115-175, his was 727)
Serotonin (normal 120-185, his was 349)
Glycine (normal 455-980, his was 1858)
Glutamate (normal 15-32, his was 154)
Histame (normal 14-24, his was 44.6)

GABA, Creatinine, and PEA were the only ones they tested that came within normal ranges.

These are their products that we'll be starting ...

Avipaxin
Kavinace
EndoTrax


Also today we had a nice parent conference over at Alpine. Nothing remarkable there, except that his Free Op's have been so good that they are going to phase out counting them, and focus on manding and tacting.

more eggs.

So, everyone remember the dinosaur egg story from last week? (which he's still sleeping with and calling EGG every night...)

Today while digging out my flowerbeds to turn them into vegetable beds, Dominic was very...THERE. So i told him to go find his egg and bring it to me. he trotted off to the house, and I congratulated myself on getting a bit of space for a minute.

He comes back outside and hands me a chicken egg from the fridge. EGG!

Fortunately, he didn't break any while getting it out, OR putting it back. And carried it VERY carefully.

Gearing up for Doc Appt next week...

And so I've been getting our paperwork in order. Here are the talking points AND data for our appointment:

- Major behaviors w/the Captomer We gave it 3x on Friday nights and both Saturday and Sunday were bounce-off-the-walls, where’s the charcoal kind of days. Only charcoal didn’t help. We are returning it.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
- Dominic’s speech jumped significantly after he got over the crud he had in Feb. One of three things has happened – either that fever he had was one of the “mythical” healing fevers, or the Vitamin A we added is a wow sup (side note, isn’t there a high Vit A protocol for the measles? I’ve always thought the initial injury for Dominic was measles component of the MMR…), or he just finally hit a sweet spot in his therapy/development.

- After our conversation about Evening Primrose Oil last time, I did some googling. What do you know about the combination of Evening Primrose Oil and GrapeSeed Extract? There’s been some buzz on Autismweb.com about that combination, with dosage of 500mg EPO + 100mg Grapeseed Extract 2x a day being amazing for speech.

Also am seeing people very exciting about L-Carnosine to increase speech.

We’d like to do a month trial of each of these unless you have any reservations.
~~~~~~~~~~~~~~~~~~~~~~

- Last time we talked about our big wows being TNF-a inhibitors, and you said that’s great, but whats causing the overload of TNF-a. I’ve been digging, and what I’ve learned is that in general, pretty much anything can trigger TNF-a production: malignancy, infection or inflammation; under inflammation, external agents (toxins, trauma, medications etc), internal agents (autoimmune processes, allergic reactions etc).

But I also found This article in the Journal of Neuroscience March of 2005:
Differential Regulation of AMPA Receptor and GABA Receptor Trafficking by Tumor Necrosis Factor-

Which basically documents that TNF-a increases AMPA receptors and decreases GABA receptors causing a double whammy of excitability. (leading to the stims and other negative behaviors, plus the super high energy) So we’ve been supplementing GABA all this time… but now I am understanding that the need for GABA was potentially cause by a TNF-a damage.

Do we know how long TNF-a remains in the body after an injury? There seem to be so many options of things that probably increased Dominic’s levels of TNF-a – initial injurying virus, toxins (metals, environmental toxins, yeast die off), allergic reactions. Have we ruled out the big autoimmune illnesses ?

~~~~~~~~~~~~~~~~

And here is the Data...

short update...

Dominic is still averaging over 300 free ops at Alpine in a 3 hour session... today was 404!.

He sleeps in a single bed. Tonight he took to bed with him a large bear (seriously, as big as he is), a sock monkey his grandmother made him ages ago that he suddenly loves again, his froggie and his dollbaby (smallish stuff animals). and a rock - it looks like a large egg with cool striations on it. We told him it was a dinosaur egg, so he brought it inside, and has started sleeping with it. Tonight he picked it up, and said EGG. and i said whats in there... and he said (garbled, but clear enough to understand) dinosaur baby.

So cute.

But really, my kid sleeps with a rock?

Triennial IEP was today

And it was blissfully uneventful.

Dominic's current SPED, Kindergarden teacher and Alpine lead therapist and Rod and I sat down and reviewed goals, eligibility etc. (Much nicer than last year when there were easily 12 people around the table)

No suprises. Dominic still qualifies for the same level of services he's received in public school this year - a 1 0n 1 aide for the duration that he is there, 2 35min speech therapy sessions per week, and 1 45min OT session per month. He also still gets door to door transportation in the SPED bus.

Since this was to determine eligibility for 3 years, we don't have to reverify that next year, just reset goals.

in unrelated news, he's had over 300 free operants at Alpine every day now for 7 sessions running... today's was 365. March's numbers will be VERY interesting.

And, i pried the monkey hat away from him last night to wash it.