Fun times at the North Pole yesterday....

Shy Boy:

Going down the Giant Slide.... Mommy right behind him

With Daddy on the train

Weird cowboy ride that defies description....

Those long curls of his are getting cut today.  But isn't the hat hair just cute?

Rode this one without an adult with him. Did great

Apparently boats are boring, and water is more interesting

He really is doing just fine on this new protocol.

We had our monthly parent meeting today over at Alpine and talked about how well Dominic has done this month.  Behaviors are overall a little bit down, and verbals are actually a little bit up (both spontaneous Mands and spontaneous Tacts are averaging 111 for half day, compared to 108 and 102 respectively for June).   His cutting (with scissors) skills have increased – he’s pretty much mastered straight lines, next up is circles.  He’s getting better with his writing skills, but still struggles significantly.  He’s almost mastered capital letters, and they’re working hard on numbers.   He  plowed through a lot of targets with full days in June and July.  He goes back to half days (in the new facility – which is JUST GORGEOUS) on Monday.

So, Since May we’ve come off the following Dr K supplements entirely and we’re not seeing any brain fog, behavioral increase, or verbal decrease.  This is SO exciting.    Remember, last year, when he had a major regression when we took him off things for just 4 days for a blood test?

 

Travacor Junior

Nutribiotic GSE

Flax oil

Enzymedica Virastop -

actifolate

Source Naturals Evening Primrose Oil

DMG

Source Naturals Grapeseed Extract 100mg

Source Naturals Quercitin

Oxycell Glutathione Cream

NOW MCT

Douglas CoQ10

Metagenics Adreset

Pharmax cod liver oil

Designs for health Lithium Synergy

Therabiotic Complete

Kirkman Digestive Enzyme

Caprilex -

Source Naturals Gaba

Source Naturals Vit C

Source Naturals Lysine

Vit B12 shots

We’ll be coming off these in the next couple of weeks, and are already at reduced dosages:

NeuroProtek -

Nutrivene Curcumin

Source Naturals Vit A

Source Naturals B6 (p5p)

NeuroScience Avipaxin

Liver Life

Cytoflora

Klaire B Complex

Neuroscience EndoTrax

NeuroScience Kavinace

Which will leave Dominic on these supplements.  I suspect we’ll eventually also pull out the zinc and D3.   He’s taking more capsules than ever, but at least its significantly fewer different things we’re putting into him. (so so glad that he swallows pills with no problems.  I cannot imagine opening all these pills every day)

Bentonite Clay

mB12

Bowel strength

Multi vitamin (right now, Klaire VitaSpectrum, but we’re going to transition to Rainbow Light’s brain and focus when we run out of Klaire)

Costco Fish oil

D3

Zinc

We haven’t been to HBOT since June, and were only at 2x a month there for May and June.  I did win the silent auction Monday night at the Alpine fundraiser, and got a great deal on 10 sessions of HBOT, so we will be going back in September 2x a week for 5 weeks.  So that will be interesting.

New Alpine picture....

Over there in the corner. :)

Continuing down this Unique Healing protocol path….

We had a call with Donna yesterday in which reviewed the results of the mB12 trial, and talked about tweaks.

Symptoms for the last 2 weeks – twice he got uncomfortable enough (eg, going to the bathroom and sitting, TRYING, but not able to eliminate) that we helped things along with magnesium.   Other than those 2 days, he’s been going 2-3x a day, smaller, fully digested normal colored kind of lumpy (eg, not perfectly smooth/round).   Mid week last week he got the same runny nose/cold that I have, so I gave him colloidal silver.  On Saturday night, we noticed for the first time ever a horrible, sulfuric bad breath (and gas) from him, Ditto Sunday and Monday.   Behaviors are overall notably better, Speech is holding steady.

Donna said that the sulfuric breath and gas are probably a result of bacterial infection, which is interesting.  A quick google shows that another possibility could be eating too many sulfur containing foods (this would  surprise me because this’s never been an issue before).   She also said that because of the bentonite usage, the gasses are coming out instead of accumulating in his blood.  So I suppose that’s a good thing – its certainly disconcerting for your child to reek of  rotton eggs.   She was very glad we were already giving him colloidal silver and we are to continue.  He HATES the taste of  it…. 

High mB12 trial

Well, his behavior is noticeably better at Alpine as shown by multiple days each week with zero non compliance.  But verbals are holding steady.  And we’re throwing a LOT of mB12 at him.  So the question becomes, is it worth the money for the behavioral change, especially since we had to go up to 24 tablets a day.  We’ve decided to stay with the super high dose of mB12 at least through the first monthn or so of D11, since transitioning to 2 environments was so hard on Dominic behaviorally last year.  Hopefully it’ll help.

Donna did mention that since the super high dose of mB12 was effective with behavior, but not speech, then its clear that his body isn’t making it, and he needs it.  But that we need to find another crutch to help with the speech and amp up the bowel healing.  Eventually the bacteria in his gut will make all the mB12 that he needs, so this is not a forever thing.   From her experience, that’ll be upping the dosage of bentonite.

We talked about the next couple of Dr K. supp’s that we’re going to east off of – the B complex, extra E, and the anti inflammatories (curucmin, neuroprotek).  We talked about how the anti inflammatories have been a huge wow for us, and we’re going to transition them to the Bentonite, which is anti inflammatory itself (because it removes the acids that cause the inflammation).

So, we’re going to trial  an increased dosage of the bentonite - we’re going to  go up to 60 caps a day [from 30] for 3 days and  if there’s any change at all in his stools – less frequency, different form, different color, etc – then we will jump up to 90 for 3 days , and if there’s changes at that level then stay. If no, go back to 60 . If there’s no change in his stools with 60, we’ll drop back down as it will show that the problem isn’t too many acids in his blood, its that his bowel needs healing, and we need to focus more on the bowel strength healing.

Fun times!  So glad that swallowing pills is not an issue for Dominic….

And this round goes to Mommy!

Dominic doesn't love zucchini.  In fact, he prefers to skip it entirely.  Dinner tonight was stuffed zucchini... and i specifically left the cheese off of some of them for him to be able to eat.

Here's how it played out

 He ate the meat, avoided the zucchini. I caught him feeding the dog some. I put the dog in another room.  He screamed at me to UNBUCKLE the booster seat.  I asked him if he'd like some strawberries, and if so he needed to eat the zucchini.  He did the whole cover his mouth with the hand thing while sobbing at the injustice of it all.

I asked if he was all done, and he proclaimed " ALL DONE"

Okay.  Bath comes after dinner.  So i took away the dinner plate AND the strawberries and ran the bath.

Hysterical crying.  Snorting snot.

I unbuckle him.  He buckles himself back.  I offer the zucchini, he locks his lips.

I run the bath.  Strip him (over the screams), hose him off in the worlds fastest bath, Wrestle him into a towel, put on the pj's....

go to pick up his laundry and he's darted into the kitchen where he's shoving the zucchini frantically into his mouth.

And i sit him down with his strawberries before i tuck him in.

He happily goes to bed.

This made my day.

A mama friend of mine, who we know from Dominic’s pre-regression days, when he played with her little girls regularly is also a therapist at Alpine.  She has just recently come back after taking a little more than a year off for the birth of her third child, and sent me this lovely message yesterday.  I asked her if I could share it over here because it just plain made my day.

“So, I know lines get a little blurry being a friend and also a therapist and I'm not sure exactly how much I should be talking to you about what goes on there. But, I just HAVE to gush on your boy! It is like a different child from when I went on maternity leave! I am not on his team and only see him at lunch sometimes. Today I sat with him and he looked at me, and asked for things!!!! Then when it was time for me to go he LOOKED IN MY EYES and clear as a bell said, bye! It is amazing! I am so proud of all of your hard work and fighting for him and so proud of all of his hard work. He has made so much progress, I hope this new program has the results you are looking for! (BTW, he has the most gorgeous hair in the world!)”

This post is all about poop. And Behaviors.

First poop.  Feel free to skip ahead.

So one of the big  pieces of this unique healing protocol we’re doing is healing Dominic’s gut.  Actually, that’s  the whole purpose of the protocol. Idea being, if the gut is healed, the rest of the body is too.

One of the concerns Dr K had when I mentioned we  were going to use bentonite was that he had a patient years back who ended up in the ER with a bowel obstruction due to bentonite.   I promised I’d watch Dominic’s stools religiously.  And I have been (I even have alpine therapists telling me his stool status for every session.).   When we mentioned the impaction concern to Donna, her take was  different.  She said that she is the only practitioner doing high dose bentonite anywhere right now.  And in the 20 years she’s been doing it, she has not had a single person with a bowel obstruction.   She does not believe we are at risk of a bowel obstruction for Dominic.

One of the things I asked her was – what do we do when he gets constipated, and by constipated, I mean clearly uncomfortable, clearly needing to go, pushing so hard he’s in tears, etc.   And I told her we’ve done prunes for this before.  She is not a fan of prunes because they can cause cramping.  She told us she’d rather we used magnesium (because it wll relax the colon muscles and is alkinalizing) or give additional bentonite.

Up until yesterday, Dominic has been pooping 2-3x a day, big one in the morning, smaller later. Yesterday, he sat down to go and nothing happened.  He was Not. Pleased.  He sat down, clearly needing to go probably every 45 minutes all morning.  To the point of saying OW and doing the wiggly jumpy dance.  So I gave him magnesium at lunch.  By late afternoon it worked. And it worked WELL.  I have never seen so much come out of such a small body.  And he was MUCH more comfortable.

 On to the behaviors.

Last week, both Thursday and  Friday, Dominic had ZERO non compliance incidents at Alpine.  A non compliance is when he refuses to do what he’s asked.   This is amazing. In June, he was averaging ~3 non compliances per day, and last Sept, he was averaging 8.  Remember, June and July are full days, where September was half.   At one point we were talking with Alpine about timing of non compliances, because each episode was lasting 5-15 minutes.  Its hard to get work done when you’re having that big of a snit – so without non compliance, he’s getting a whole lot more therapy time.  We’ll see if the trend continues.   Its certainly looking like increasing the mB12 to 120mg / day has had an effect.

New Protocol Updates…

Okay, we are at day 10 of the Unique Healing Protocol, and here’s an update

On 7-8, we added 80mg (yes,mg, not mcg) of mB12 per day.  We increased that to 120mg 7-12 because while we didn’t see any negatives, we also didn’t see super positive changes that Donna had hoped we’d see.

Where we are right now:

Stools:  1-2x per day, once a day being very large and the second time just small.  Until this morning they were very normal looking, and this mornings was a bit yeastie (fluffy) looking.  (will give oil of oregano tonight and tomorrow morning for the yeasties)

Sleep: No changes, still going down ~ 7ish and getting up ~ 6ish.

Verbals:  Data from Alpine remains pretty similar to June – Verbals varying widely through the day (out of 4 sessions yesterday, he ranged from 35 -120 spontaneous tacts per session, for example)

Behaviors:  If anything, he’s a little calmer, but overall behaviors seems to be holding steady with pre-protocol.  update:  today at Alpine, Dominic had exactly ZERO episodes of non compliance... a first EVER. (he had 3 growls and 4 yells, for a total of 7 negative behaviors ALL DAY)

We’re about a third of the way through phasing supplements out – we’d started some in June, but are thrilled to report that data shows he’s not having any regression with the phasing out.  This is part of what the Unique Healing protocol said it would do, so if it does the rest (eg, heals his gut), then we will have made huge progress.

unique healing followup appt

we had a followup on the unique healing protocol today.  Here's how the week panned out

Tues:  Started Bentonite
Thurs: Started Bowel Strength

poop:  Looking overall more formed.  Still 2+x a day.
Behavior: no notable changes that we can pin on the supplements.  He is a bit more stimmy, but we're a week into summer therapy break, so the lack of routine could easily be the culprit.

Changes:  we're going to add high dose mB12.   5000mcg tablets, 16/day for 5 days.  If behavioral/speech/focus improvement, go up to 20 and stay.  If no improvement, try 24 for 5 days before we give up.  mB12 is one of Donna's go to crutches - in a healthy gut, the gut flora produce all the mB12 that a body needs.  By supplementing at heavy dosages while working on healing the gut (the long term part of this), she frequently sees symptoms disappear.   Since B is a water soluble vitamin, its not possible to overdose, so i'm not concerned about that.  Also since mB12 should balance moods, once we get established on the mB12, we will go ahead and stop lithium.

supplements we are clear to stop when we run out of them: probiotics, digestive enzymes, adrenal support (who knew, bentonite will balance the adrenals by pulling out acids and making them more capable of doing their job).  I really expect we'll be stopping almost everything he was on here before too long.

Right now I kind of feel like we're cheating on Dr K., (even tho he cleared a trial of the protocol) but I want to give this an honest try (which I believe will be a year).  After all, he's had 2 1/2 years of us doing everything he suggested.

And we followup with Donna the 25th of July.   It sounds like we'll have only a few more appointments with her and then she sends us on our way to manage things.

Doc appointment update

This mornings doctor appointment was interesting.

I'll preface this all by saying I'm not really interested in doing this without an MD on board who can monitor / test / advise.     here're tidbits from the appointment.  (I did go in with attitude, not that that should surprise any of you.)_

We arrived at 7:50 for our 8am appointment.  We did the whole weigh, measure (he grew 3/4in and a couple of pounds since March, I knew he was eating alot), vitals thing at 8:10 and went back to the room.  At 8:30 the nutritionist came in and we did the preliminaries, and at almost 9am the doctor came in. Mind you, we were his first appointment of the day.    Apparently he'd had some questions for the lab that did Dominic's adrenal/neurotransmitter test and spent half an hour on the phone with them. while we waited.  (the iPad is a miracle, it kept Dominic from crawling the walls)

Dominic's adrenals are now in a much better place.  Turns out the reference range on the test was for Adults, not children.  Also turns out there is no reference range for children (insert eye roll here), but since his cortisol levels are now doing a nice curve down over the course of the day instead of flat lining, and he CLEARLY has plenty of energy, and the weird dilating eyes thing is easing, we're going to call it fine.

Neurotransmitter levels are better, but still very out of whack.  The interesting thing about this retest was the paragraph at the top of the interpretation/recommendations that said "based on the patient history information and the test results for the individual, and Intestinal Barrier Assessment ... is recommended.... Because intestinal distress can lead to neurotransmitter, endocrine, and cytokine imbalances [it is] a benefecial adjunct to neurotransmitter assessments"

which piggy backed nicely into my asking for them to agree that we can trial the unique healing protocol.  They agreed.   I might've not mentioned the dosage, tho, as they were clearly spooked by the usage of Bentonite clay.

Some tidbits from the appointment (like I said, I had attitude today. I'm tired of getting nowhere and throwing more and more bandaids into Dominic's system. I swear, its like playing whack-a-mole - we get one thing all balanced out and happy and another pops up).

 - Dr K suggested we do the Biofilm protocol again. I said no.  He said why not, I said "because the last time we tried that, it took 9 months for the diarrhea to stop and i'm not interested in repeating the experience".  he was a bit taken aback.

- Dr K said "oh no, you can't take bentonite clay for 3 years, that's ridiculous".  I said "why, we've been doing your protocol for 3 years".  he sputtered.

- Dr K said "Bentonite clay is definitely a chelator", I said, "fantastic you've been wanting to chelate him for ages, maybe this one won't make him crazy"

- When talking about the Intestinal Barrier Assessment test, The nutritionist said something along the lines of "Neuroscience is now making a product if you test xyz on this test", and i said "OF COURSE they are".   there were uncomfortable chuckles all around.

So, actually managed to get out of there for ONLY the $15 copay.  That's a first. I do have one supplement tweak (we're coming off of Adreset and going onto Calm-PRT), but I did say it had to wait for a paycheck.  He ordered a slew of Lab Corp bloodwork including my request for the MTHFR genetic mutation, and strep antibodies (since we think he had strep throat in May), as well as vitamin A levels and a handful other things (D, Copper, CBC).  If his A comes back under 80% then we will be cleared to re-do the high vitamin A protocol earlier rather than later.  We also are to go back and pick up test kits for another urine toxic metals test and the aforementioned Intestinal Barrier Assessment.

we are scheduled for a followup appointment in November, so that gives us a good 4 months to get all this testing done and see where the Unique Healing protocol leads us.

What do you mean I have to take a bath, its only 2pm!

Lazy summer days.... Dr K appt tomorrow.

What is it about boys and dirt.   Dominic's been REALLY enjoying mud.  Today we spent some time over at Baby Cotton Bottoms Moms get together just hanging out, and he hung out in the backyard playing in the mud and grease (from their smoker) .  That'll be fun to get out of his pants.  We're having a mid afternoon bath at the moment. :)

Our new sup's have arrived.  So I gave him his first dose of bentonite clay a few minutes ago, and we'll do the second dose tonight.  We'll start the bowel strength on Thursday

Speaking of sup's, tomorrow is our Dr K appointment.  Here's the paperwork I've sent in:
Focus of today’s visit:  __Followup  supplement change and repeat Adrenal/NT test
Problems:  _n/a
Concerns regarding previous Recommendations:  
Were you able to complete recommendations?   Yes _X _     No_ __


Questions/Comments:

We’ve been making a real effort to reduce out of pocket costs a (when we left here after the March appt, between sup’s, HBOT, and ABA, we were spending $3K/mo out of pocket on Dominic’s medical). We are working on weeding out supplements that are not showing benefit and reducing dosage to maintenance for those that are, hence the hokey pokey you see:

Changes we’ve made to Dominic’s routine:
Date     Supplement Change
26-Mar  Add Adreset
2-Apr    Add Kavinace
4-Apr    Add P5P, Actifolate back, Removed MCT oil (per Cindy)
6-Apr    Add Avipaxin
9-Apr    High Dose Vit A
10-Apr   High Dose Vit A
13-Apr   Add EndoTrex
2-Jun    Add EPO/GSE Combo
5-Jun    Add Lithium back in
18 Jun   Removing DMG, Actifolate, EPO/GSE combo


Notes on those changes:
Adreset:  1 capsule in the AM was too much for him, he didn’t sleep that night.  We cut the dose down to ½ capsule and have maintained there.  His eyes are not dilating randomly like they were before, so I feel like we’ve made good progress.
Kavinace, Avipaxin, Endotrexx.   No negative side effects.  Endotrexx we can tell he’s calmer with.  No obvious changes w/Kavince or Avipaxin
High Vitamin A:  Huge success. Major increase in verbals in April. Did not maintain in May, Would like to re-do High Vit A protocol in November.
Lithium – Added back in because of major emotional rollercoastering, seems to be evening out his moods.  Currently taking Designs for Health Lithium synergy
DMG, Actifolate, MCT Oil, Evening Primrose Oil / GSE – Data does not show that these improved either speech or behavior, so we removed in an effort to reduce monthly supplement costs

Questions/Issues
-  Dominic has been exposed to Strep (Joy’ had strep throat in May). What do we need to be on the lookout for re PANDAS other than tic’s (which we are not seeing)
-  Should we  test for MTHFR defect?
-  We need to move off of glandular adrenal on to herbal support per conv. w/Cindy in March 2011 – what should we move to?
-  I have just completed reading the book “Unique Healing”, by Donna Pessin and would like to trial her program, which consists of:
    -  Food Grade Bentonite Clay to pull acids and toxins out of the body
    - A product called “Bowel Strength” which contains: berberine sulfate, grapefruit seed extract, gentian root,
black walnut hulls, goldenseal, Jamaica quassia bark, sweet wormwood, garlic.

Here are the speech trending charts from Alpine

Patie

first unique healing appointment...

We talked with Donna, the author and creator of the unique healing protocol I mentioned a few posts back this morning.  Its the one with the Bentonite Clay and the Bowel Strength formula.  Its geared towards getting acids out of the body and alkalizing the bowel to heal it.

We are both of us very intrigued, and the protocol itself resonates with us specifically for Dominic's issues.  So we're going to give it a try.  We talked science behind it (don't ask me to type it all out, but she did a good job of explaining and it is all documented in the book), and we talked methods and dosing, etc etc.  Its clear that she is passionate about what she does.   She actually was on time for our appointment and finished within the time she allotted, which frankly impressed us. alot.  

We will be straddling protocols for a while, I suspect.  I'm not interested in stopping seeing Dr K, but I think we will back off signficantly.  We have an appointment with him next week, and I can't see the next one being any earlier than Nov/Dec, just depends on what the test results say.  If we really can do this Unique Healing protocol and back off on the majority of Dominic's supplements with no regression, we will.  Shifting to this protocol will end up saving us a lot of money in the long run.

Its a bit jarring to have someone refer to pretty much everything we've done the last 2 1/2 years as temporary crutches, but unfortunately - she's right.  Everything we've used thats been effective... when it stops, we lose ground.  Which is why we don't stop anything, we just back down to a maintenance level - which results in a kid who takes 42 different meds/sup's a day. Which is ridiculous. 

We are going to be careful how we broach with Dr K - we do want to be able to continue working with him, but at the same time need to be able to have him approve the trial of supp's so that we can write their cost off taxes.   So that'll be interesting next week.

So, we're starting the protocol as soon as the stuff arrives.  Guessing it'll be here tomorrow and we start Sunday.  Otherwise it'll be here Tues and we'll start Wed.  We have a followup appointment with her next Friday to talk about how its going, and discuss further nuances of her protocol.

negative impressions - she talks about her book alot (dude, really, i already bought it, you don't need to sell it again); she is easily distracted (look, a squirrel!); she comes across as very angry when she talks about what are considered standards in the industry (she spent 10 minutes talking about how activated charcoal most certainly does.not.pull.nutrients because of the electrical charge it carries.  Everyone we've ever talked to said you charcoal 1 hr before or 2 hrs after a meal so it didn't pull nutrients - and her passion about that came across as anger.)

So, we'll see.  We will go slow and careful with removing things from Dominic's list - but wouldn't it be awesome if this was a big wow ...