Wednesday, February 10, 2016

Introducing Kumar


We have a new family member, who came to us somewhat spontaneously.  The breeder we got Kama from a little over a year ago needed to quickly find homes for some puppies due to personal stuff.  And therefore we got a deep discount on a new standard poodle, who is currently 9 weeks old.  We’ve named him Kumar (continuing with our Hindi theme, Kumar means little boy).   He is a little lover – currently asleep in my lap as I type away.   He also spent his first night – all night – in his crate.  He cried until I turned off the lights, but once the lights were off, he went to sleep pretty quickly.   He’s mastered the doggie door, going up the steps and we’re working on potty training. he is a very chill dog.

Dominic knew we were getting a puppy, but was at school when we drove out to Peyton and picked Kumar up.  He barreled in the door yesterday after  school loudly saying “NEW PUPPY”.  He is officially in love and very gentle with Kumar. 

Tuesday, February 9, 2016

Mom's weekend away and a plan



This past weekend I got out of town with a couple of girlfriends for a girls weekend.  It was fantastic.  My TMR mama friends Poppy and Rainmaker and I spent 2 nights in the mountains relaxing.     The weekend started with me picking Poppy up from the airport Thursday and bringing her home with me.  Dominic did AWESOME – the coolest part of her at my house was Friday morning.  Dominic was eating breakfast and she was walking by and clear as a bell he called her name to show her something on the ipad.   She was blown away as was I. 

While I was gone, I had a couple of ACTUAL phone conversations with Dominic that were several exchanges back and forth without any prompting on Daddy’s part.  And he and Daddy had a boys weekend, got haircuts, and hung out.

While we were up there and focused, Rainmaker and I brainstormed directions to take Dominic’s healing (she is actually one of our treatment team members)  and we made a new plan.    We are going to (finally) go after the virus(es) that caused his initial and subsequent regressions.   We feel like we’ve cleared enough of the garbage out to finally heal that injury.  So that’s the focus of 2016 – get the latent virus out.

Wednesday, February 3, 2016

Snow day OT

Two minutes after arriving to do Dominic's occupational therapy,  Miss Ashley decided to have him do some heavy work and shovel snow off our back deck before she settled him down with fine motor.   He's having a blast!


 




And Video too!!!





And after 20 minutes of shoveling (which he loved), he sat nicely and did all his coloring.



then when Ashley left, he wanted to go back outside. I think this look is CLASSIC Dominic. 



He is currently outside flinging snow about and having a wonderful time.

Tuesday, February 2, 2016

Working balance!!


In case you wondered how Dominic's OT works on his balance - he stood on this bosu for a solid 30 minutes while doing an activity on the white board.  She told me he was getting the train put together faster than she could give him pieces.






We are snowed in for a second day in a row here.... there's at least 15" - i'm going to attempt to measure it officially soon....

Monday, February 1, 2016

Mommy's going to CNA school!

I wrote a blog post for TMR a little while ago about making the most of our resources.   Today we had our appointment to determine Dominic's eligibility for CNA services.  He has qualified for 3 hours a day / 21 hours a week.  In the state of Colorado a parent can be the childs CNA (apparently CO is an anomaly in this case).  And so I'm signed up for night school to get my CNA starting the end of this month!

We have known about this and been semi-actively trying to get it going for several years.  We are very excited to get started.

..... now, where to buy comfortable scrubs, which I will wear for the class and the practicals...

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