Sunday, January 31, 2016

Month 13 Footbath Gains and End of January summary

Wow, the changes in the last year have been amazing. this time last year we were just starting to see glimpses of the things that now we are taking for granted.   (except we don't ever take things for granted)

Dominic is talking a lot more.  We're hearing many more attempts at multiple word phrasing.  For example the other day his OT was over and he was very unhappy to be working.  So he stood at the top of our stairs, waved to her, and said "I'll be right back".  Its a new phrase.  he's singing a LOT - every single movie he watches he is now singing along to. Its hard to distinguish words, but he's definately trying.

He is back to covering his ears when he does pencil work (the sound bothers him) and I have seen him covering ears for other loud sounds lately too, which means we need to revisit the pathogens that cause sound sensitivity (they are lyme coinfections, and as we are pretty sure I have lyme - we've seen it in my blood - we're pretty positive he does too since it crosses the placenta and stays around FOREVER).  So mental note for our next Dominic ND appointment.

Speaking of taking care of myself and ND appointments, I got really tired of being swollen all the time (my hands and feet blow up like balloons randomly) and we did a food allergy panel that I got the results back a few weeks ago on.  I am ridiculously allergic to dairy.  And i've known for years it made me sneeze, but the level of allergic is enough that i've got to just stop. So i'm trying to get used to no butter, no half and half for my tea, and worst of all no cheese.   Also very allergic to MSG.  Now if we go out to eat I get to have the servers check the MSG status of all food items. Its a blast (Old Chicago uses MSG in all non-salad dishes. I was appalled.)

Now that our home based ST did an oral exam and identified a very week tongue and non existent frenulum, our center based ST is also adding in oral motor exercises.  She had Dominic trying to point his tongue up and down Friday night and he can't hold it but half a second.  He needs to work up to 10 seconds. 

I feel like we've finally peeled all the layers off and are able to actually address the actual injuries that he's got - the structural piece with poor tongue strength - he was talking in sentences preregression and I cannot help but wonder if his tongue actually atrophied with the brain damage?  No clue.  But its fascinating.

We are still working on coming to a balance with the PMG's we're using - his liver is fluxuating in how it feels.  And we've had some rough non-compliant days to go with, which only makes sense. 

We continue to use the IonCleanse by AMD footbaths 3-4x a week, and while i did switch to the 304's for much of January, we are back to the 316's and doing great.

- We know he's reading.  We are working on building the pathways for him to get it from his brain to his mouth.  Bit by bit its coming.

- He is allowing AND asking for first aid after injuring himself.  For a first aid non responder, this is awesome. He also told me when he didn't feel good that he had a sore throat.  Giant gain.

- he and Daddy built a fort together and watched a movie one afternoon.  Totally NT little boy behavior

- he has learned to vacuum and we've decided its his new  chore.  So far he's done it twice.  He will do it again tomorow.

Monday, January 25, 2016

Pathetic little sickie...

Yesterday Dominic woke up with normal energy and affect, but when I fed him his breakfast, he pointed in his mouth and said Ow. 

ya'll, he told me he had a sore throat!!!!!!  Do you realize how huge this is?

Anyway, he chose to not eat his breakfast which is a giant red flag for us that he isn't feeling well because normally he will eat his bodyweight in whatever we feed him.  Shortly thereafter this is how he decided to rest....



a few hours later, he threw up.  I rubbed some ginger essential oil on his tummy and i rubbed some immupower essential oil on his big toe.  I made him an electrolyte slushy (electrolyte beverage of your choice + ice), which he drank.  Then he ate his eggs from breakfast (hooray), and some applesauce.   He kind of slumped down again before bed, but after a full nights sleep was perky and back to normal for him this morning.  So I sent him to school.

The big takeaway was him telling me what hurt.  This is completely a new feature.   Its also really nice that my voodoo (essential oils and electrolyte slushies) is working for us. :).  So far, it doesn't appear that whatever it was was contagious, but we did warn Miss Beth since she babysat Sat night. 

Sunday, January 24, 2016

Shenanigans with Miss Beth

Mommy and Daddy had a date last night, and Miss Beth, one of Dominic's favorite OT's came over to hang out with him for the evening.  It was her first time babysitting for us, and Dominic got so excited that "Bef" was coming over.

She texted me these pictures over the course of the night, and said that he was AWESOME and calm and totally conversational (to his ability) versus echoic which is what she sees in a therapy setting.  She was really excited to hang out with him in his natural setting.




This is BB8 - apparently he is remote controlled and they locked the dogs downstairs and played with him.  Dominic was super gentle and loved it. 

then, the selfies.  (and yes, she gave me permission to share them here)




He does love clowning around.


Apparently after she read him one bedtime story, she asked if he wanted another, and he said "No.  Goodnight"  and threw her out of his room.  I find this inordinately hysterical.

Tuesday, January 19, 2016

#testimonialtuesday

Its been awhile since I've raved about the IonCleanse by AMD.  But its Tuesday and therefore its time to tell you fun stuff about how well Dominic is doing.  First... the cuteness of him trying to sing Sweet home Alabama along to Despicable Me while doing a footbath.  (#dontjudgethesludge)



So this last week was us getting our feet wet with our new home based OT and ST.  The Occupational therapist is one we have had in a clinic setting before  but she had a baby in the fall and has been off on maternity leave.  So she told me yesterday as we were going over the new round of reflex integration work.... "he is talking SO much".  And she's right.  Its one of those situations where the change has been pretty gradual to us since we're around him all the time all day.    But he's talking a ton more than he was when she went on maternity leave.  And his articulation is getting more and more clear.




Dominic's liver has finally stopped feeling completely congested.  Its "nice and soft and supple" with only a little smidge of congestion left per our organ manipulating chiropractor.  This is a good thing.  you'll note the grossness of the footbath  above - i shot that at about 30 minutes in and its ALL liver dump.   Interestingly his spleen is also behaving much better now that liver is.  Liver is foundational, so i'm sort of hoping it improves everything.

Behaviors - well we really haven't seen any.  There's been a lessening of verbal stimming (the screeching) as the words increase.  I haven't seen any real stimming in a while.




Sunday, January 17, 2016

304 vs 316

So... I have been doing an experiment the last few weeks by using the 304 plates from AMD as opposed to the 316.  The 316's are what are recommended for home use - they are cheaper and last longer than the 304's.  I decided to do the experiment because we have a lot of folks interested and making noises about the 304 pulling more out faster - they were designed for professional office use not home use, so they are designed to get more sessions in.

here's what i've learned


1.  yes, we did get more gunk out faster.  We also got detox flu and needed more electrolytes and minerals to manage.  (and this is a kid I can throw almost anything at and he doesn't get herx-y - so sensitive kids are going to react)

2.  We used up the plates faster - in only 3 weeks its looking like i need to change my plates within another few footbaths and usually i get a full 4 weeks.  This is with storing the plates in ascorbic acid solution when not in use (a trick some people find increases the number of minutes you can get per set of plates)


We got a lot more black sand (metals release) with the 304's - and for Dominic that was just a little bit in each footbath, because he isn't a metals kid (he's a viral injury kid).  If a kid was a metals kid, it would be very interesting to see what came out.  I have gotten more green undertones and frothy bubbles  in my footbath - similar to when i did an hour on the 316's after flying. 

Verdict:  We are going back to the 316's and sticking to slow and steady wins the race.   Even with using them more they last longer than the 304's and i'd rather have a steady rate of detox at a better price than pushing him into herx. 



Thursday, January 14, 2016

A fresh set of eyes

We are in the process of adding home based occupational and speech therapies to our routine, while keeping 1 day a week in the center based program for familiarity and consistency.  This week was our eval/intake week with our sort of new therapists. I say sort of new because the OT had worked with Dominic prior to her maternity leave from the clinic we attend, so already knows him well.  He was SO excited to see her that he gave her huge hugs and kisses as she left and nearly had her in tears.   The speech therapist is new to us for services, but we had met in a social setting a few months ago.

So today was the speech eval.   We did a lot of talking about big picture - we want conversational speech and no using PECS.  About midway through, she did a full mouth exam, which i don't think any SLP has ever done for us (actually if memory serves, several have been bitten for the attempt).

He has almost no frenulum (the flap of skin attaching the tongue to the bottom of the mouth).  His tongue's strength is inconsistent - to the point that she wants to do oral motor exercises as part of the speech therapy because the floppy tongue is the reason he is slurring the middle syllables of words AND why he's having a hard time with ending sounds of words.  Its fascinating what a fresh set of eyes will do for you.

She's going to incorporate music, and maybe music therapy since he's started trying to sing (he sang sweet home alabama for her which was adorable). 

She brought a big bag of stuff which a certain standard poodle decided was for him and wanted toys from.  It was sort of hilarious.

Anyway, its very interesting to me that 7 years into speech therapy and this is the first time i've been told he has almost no frenulum and a floppy tongue. 

She's excited to work with him, and we are excited to work with her.  He liked her and gave her a hug and kiss too before she left which was just adorable.

Onward!!!

Tuesday, January 12, 2016

NIEHS - Call to Action

Call to action this morning over at TMR.  here's mine, which I have sent off.  Please send yours. 



Dear Ms Birnbaum,

I am writing to tell you the story of my son’s regression into autism after a virus when he was 3 years old, and ask that NIEHS do a program announcement in line with the recent senate report language, specifically – asking for research proposals in the area of environmental factors that contribute to autism, and autistic regressions.

Dominic is almost 11.  We had chosen to delay vaccines until he was 2 and then do 1 at a time because our niece had a life threatening – dad had to do cpr  - ambulance called and long term seizure disorder as a result of her vaccines (DTAP).  We thought we were making the right decision.  So he didn’t get his MMR until 2 ½.   We didn’t notice anything until after his 3rd birthday when he got Influenza A.  He went from speaking in sentences to not speaking at all.  He went from interacting and playing with other children to screaming in terror when he saw them.   He went from knowing all his body parts to gazing vacantly at us when we asked for what we KNEW that he knew.  He went from knowing all his colors and animals to silence.   It took us a year of chasing tails – the pediatrician had “never seen” anything like this in a 3 year old.   We had a CT Scan, MRI, Sedated ABR, started  OT and Speech.  Then he got another virus and regressed again.  We ended up in a pediatric neurologists office who wrote 3 words on a piece of paper “Autistic Regression Syndrome” – which isn’t even a real thing (or wasn’t at that point).  He told us that They (his colleagues) had been seeing this sort of late regression and didn’t know why or what to do but we might find some success with IVIG if our insurance would cover it.   And that was it.  No support groups, no guidance for services, nothing but a piece of paper with 3 words on it.

8 years later I know that the measles component of the MMR vaccine made its way into Dominic’s brain via a leaky gut (he had a diaper rash that was cracked and bleeding, with yeast infecting it and no one told me that cracked and bleeding on the outside means cracked and bleeding on the inside) when he got the MMR.  We have had viral titers run and in a test where anything over 20 is considered high and immune, his measles titers were 95.   That’s high enough to be a latent infection.   I believe that the measles took up residence in the speech cortex of his brain and when the influenza A caused a cytokine storm, the measles joined the party and ate his brain.  They also along the way damaged his liver (which I only realized a few weeks ago – we have struggled with liver issues for years and I only thought to google “does measles damage the liver” last week.  It does.  And anything the virus does, the vaccine can do too)

I made other mistakes too – I listened to the nurses who said to give Tylenol after shots.  I used roundup on our yard.  I fed him artificially colored garbage and GMO’d food.  

We are close to recovery.  Outside of speech, he interacts and seems like a neurotypical little boy.  Speech is greatly improved, but as of his last test, he has the verbal capacity of a 4 year old. 

It is past time to study the environmental triggers for autism.  And your office has the budget and congressional guidance to do it.  All genetic research has shown is that inflammatory genes are turned on. That’s epigenetics.  That means it’s environmental.   I would ask that with the increased budget allotment and guidance from congress your organization would specifically study the following:

-          Rate of autism in children who get vaccinated versus those who don’t (this has never been done, but should be relatively easy to do in a data gathering process using home schoolers and Amish who traditionally don’t vaccinate.
-          Rate of autism in children of women who were vaccinated while pregnant verses those who weren’t.
-          Rate of Autism in children given Tylenol before / after vaccines.
-          Rate of Autism in children who had more than 1 ultrasound

Then I would like you to study the following AS WELL AS what happens to the autism when these issues are treated
-          Rate of heavy metal toxicity in children with autism
-          Rate of lyme disease and its coinfections in children with autism
-          Rate of GI disease in children with autism
-          Rate of systemic candida infections in children with autism
-          Rate of pyroluria in children with autism
-          Rate of seizure disorder in children with autism
-          Rate of Mitochondrial disease in children with autism
-          Nagalase levels in children with autism

I believe that you will find, beyond a shadow of a doubt that what has been deemed a “mental health” catch all diagnosis is actually environmentally injury  playing out depending upon the childs specific genetic susceptibility.

Thank you very much for your immediate attention on this.  With autism rates rising like a rocket ship – and the cost of caring for a person with autism in the millions over their lifetime (paid for by taxpayers) the tide of disabled adults hitting the system in the next 10 years is going to cripple us.  Please help.

Wednesday, January 6, 2016

Me and my crazy theories...

So... ya'll know that for many years I have said that the measles component of the MMR vaccine is what caused Dominic's regression and eventual autism diagnosis, even though the pattern was abnormal.  Because we waited until he was 2 before we started vaccines and because we did 1 at a time with a month in between, he didn't get his first MMR until 2y 6mo.   I was still breastfeeding.  He had no initial reaction at all.  He potty trained a month or two later.  The following January, right before his third birthday, he weaned and started preschool and had a horrible round of the flu shortly thereafter.  I believe the Measles component of the MMR was held in abeyance by my breastfeeding since I had immunity, and when the cytokine storm from the Flu virus hit, the measles went bonkers.

We've done the high vitamin A protocol before 3 times.  The first time we did great and got a lot progress. The seconda nd third times, he got really bad rashes that indicated potential vitamin A toxicity in his liver.  So we stopped those.

When  we did raindrop a little over a year ago up at Pathways, we had a measles rash erupt spontaneously. 

Fast forward to now.   We are treating Dominic's liver and brain with PMG's because we believe that his body has decided to attack them, so by doing the PMG's, his body can attack those cells and let his own organs recover.  Today I randomly googled "Does measles cause liver damage".  Because any side effect of the Measles virus can be a side effect of the Measles vaccine.  Look what I found out of the UK's NHS site.

Uncommon complications

Less common complications of measles include:
  • liver infection (hepatitis)
  • misalignment of the eyes (squint), if the virus affects the nerves and muscles of the eye
  • infection of the membranes surrounding the brain and spinal cord (meningitis) or infection of the brain itself (encephalitis)


Hello!!!!

How did I not know this????

Every single appointment with Doc Susan since we started seeing her 4 years ago she has noted that his liver was tremendously congested and feeling hard.  She's manually drained it.  The last 3 weeks, since adding the PMG, its been getting progressively softer.   (We have a ways to go, but we ARE GOING)

Here's what I don't know.  I don't know if we need to address the measles component of the virus still.  I'm guessing yes, there is apparently a semi local naturopath with and advanced Zyto machine we could use to scan him for viruses (I don't want to do a blood draw if we can at all avoid it).   I don't know if we need to look at another round of high vitamin A, or if we need to look at homeopathic measles clear, or if we need to manage to get an actual MMR dose from somewhere and use the laser clearing method that Doc Susan uses - or if that would work because its clearly going to be a different lot so a slightly different formulation.

Tuesday, January 5, 2016

Fort!

I went into the office today and apparently missed out on fort building shenanigans

Can we say neuro typical boy behavior?!?!?!


From Daddy's pictures:  Daddy and Dominic cuddled in the fort watching the movie UP:



The Moment when the house takes off with the balloons...



What I found upon getting home





Monday, January 4, 2016

Ramblings....

Dominic scraped his foot up badly on my treadmill on Friday.  Happily he is allowing first aid and letting us keep it clean.  Also happily, turns out MAFActive cream is REALLY good at healing skinned toes. 

~~~~

I am currently charging up Dominic's new GPS bracelet.  We waited because we wanted one that was waterproof.  And we've got it.  I'm in a weird place about feeling like I need to put a GPS bracelet on him, but I want to give him a little more freedom (as a 10 year old should have) while keeping him safe.   Its a KidSportGPS, if anyone else is looking for one.

~~~~

I called the regional office of the YMCA to talk to them about what procedural changes they have made to ensure that Dominic would be safe should we choose to have him at the YMCA again this summer.  Frankly - he needs the social interaction, so I'm hopeful that it will work out.  They have made the following changes
- The boys and girls locker rooms will be locked down to the public 30 minutes before swim time and only campers will be allowed in those locker rooms until 30 minutes after camp swim time
- The swimming pool will also be closed to the public during camp swim times
- Camp Staffing hours will be changed so that there is additional staffing during swim time to ensure that children are never in the locker room alone.  Basically the morning staff will stay through swim and the afternoon staff will start before swim. 
- Children will only be allowed in the bathrooms one at a time after a staff member ensuring it is empty first. 

~~~

We are a week into neurotrophin pmg and seeing lots of chattiness, even with the foot injury.   At Dominic's Chiro appointment last week, she remarked that his liver was the LEAST congested feeling she has EVER felt it, so clearly the hepatrophin is doing something good.  With the foot scrapes, i've backed off on footbaths until he scabs up, so we're not doing huge cleanses at the moment.

Saturday, January 2, 2016

Proud geek parent moment

We are having a very relaxed last weekend before real life school starts back up this week and have kind let Dominic set his own pace.

Daddy came upstairs earlier and "caught" Dominic curled up around the ipad watching Return of the Jedi.

Let me let that sink in.

To do this he would first have to decide he wanted THAT movie (which is not animated and not in his pile of movies),  log into netflix (not a big deal), search for Return of the jedi (this means I know he's reading / spelling - even if he can't tell me), and then feel "guilty" when caught.

The executive functioning skills are coming along for sure.  Also, it means I nailed it with the next 2 toothfairy gifts I picked up today (more starwars stuff) because yes he has ANOTHER loose tooth. 


Friday, January 1, 2016

Hello, 2016

I'm not really a new years resolutioner, but I am a planner.  And this is my long range plan for 2016 with Dominic



What do we want to accomplish with and For Dominic this year and what are the steps that we are taking to get there.

1.  We want Dominic to become conversational'
- From a Biomed perspective, we're going to re-look at his viral load and see where we're at in reducing the measles levels.  We'll make sure that he doesn't have any other latent viruses that could be affecting his brain.  We will continue Neurotrophin PMG, which we started on Monday.  If it follows the same pattern as the hepatrophin PM, we will start to see results in the next week.  WE will continue supporting his neurotransmitters.   We will continue pushing hard with the IonCleanse by AMD footbaths.

- From a therapeutic perspective we're making some changes.  As I have yet to be reimbursed by insurance for any of the Vision therapy appointments (and am out of pocket about $1500),  AND because we were spending over an hour a day at home on various therapies, we have decided to stop vision therapy for now.  We have a ton of exercises we can do at our leisure at home when we are ready to pick them back up. We are also adding home based OT and ST to our regime in January (not sure on the exact date), but it will work out that he will have therapy of some variety 5 days a week.  From the OT side we are really going to push integrating the primitive reflexes required for the speech. We're going to build that foundation as strong as we can make it.  From an ST side, we're going to work very hard on back and forth conversational skills.

- From a socialization perspective, we're going to continue boy scouts and are currently weighing our options for summer programs.  High on my list for January is to chase down the YMCA and find out what they are doing to ensure that he will be safe with them for summer.  If they don't make me feel they've made appropriate changes, then we will look for something else.

2.  We want to confirm Dominic is reading.   We know that he is able to spell words, and he is able to identify sight words.  WE also know that he can scroll through the DVR and pick out his movies from a field of 75 other titles that aren't his. This is without pictures.   So we believe he is reading, but without the brain to mouth connection, we cannot confirm it.  Where with most kids, you get them to read aloud to you, thats not possible here.  So we're going to figure out another way.

3.  We want to have Dominic repeat 5th grade OR be convinced that the middle school program will be supportive and appropriate for him.  I am hoping that meeting takes place very soon after school starts back up. 

4.  I want to find a way to get Dominic back into an HBOT chamber.  If anyone has one they could lend us for a few months that would be amazing. We simply don't have the funds to buy or even rent one right now.  So I'm throwing out to the universe and seeing what comes back.

5.  I want to have Dominic's intestinal Microbiome analyzed.  We are on a list to have this done as part of a study, but its slow going and I'm not sure where we stand in line.  This would tell us if there was long term damage from the anti-biofilm and anti-pathogen protocols we've done over the years.  I have a theory that those protocols, even back to the one we tried in the DAN days where 1 weeks worth of sup's gave him horrible explosive diarrhea for 6 months, while they break down biofilm and kill pathogens, they are analogous to chemotherapy - they kill everything, and when biofilm rips off from the microbiome it leaves a hole, exposing epithelial cells to potentially toxic garbage on its way out.  While his gut doesn't seem to be an issue since we started using Restore last June, I just want to know.   We do our best with what we know, and when we know better, we do better.

~~~~~

As far as myself, I'm working on getting healthier.  I finally gave in and did an IgG blood test which should be coming back any day now so that I can change my diet and get my self deflamed.  I might even actually consider some genetic based supplementation after I talk to my naturopath.   I'm REALLY puffy.  I've also done due diligence and had my primary care doc check my kidney levels, etc (I'm assuming they're fine as I did that blood work 2 weeks ago and i haven't heard otherwise.  We'll discuss at my physical in Feb).  I am pushing myself really hard with my IonCleanse by AMD footbaths and they are showing lots of inflammation coming out, which is good but somewhat discouraging - I'd hoped i'd be past the inflammation by now.  My alternative doc wants me working on strengthening my core, so I have picked up the latest T-Tapp floor core routine and will be adding that in 3x a week starting, oh, tomorrow (gasp) on top of wearing my fitbit and shooting for 10K
 steps a day.

I have a girls weekend with 2 of my TMR sisters planned for the first weekend in Feb, and I'm planning to be healthy for it. :)