Wednesday, August 31, 2011

yeast beast.


So August hasn't been so hot for Dominic behaviorally or speech wise.   We figured we'd give it a few weeks to make sure it wasn't just the transition to half days at Alpine, the move to a new building, the addition of a new therapist, and the schedule shift of adding d11 back.  Its not.  His negative behaviors have gone from 1.1x per 3 hour window to 5.8.  Verbals have dropped 4-50%.  He's been doing his maniacal giggling routine (but his stools don't look yeastie.  Odd)

So yesterday I sent a note to Donna at Unique healing to give her the heads up since we had a meeting scheduled for Friday.  She moved the appt up and we talked today (love the accessibility).

Donna agrees with us that Dominic's having a yeast flare ( with both his pooping frequency being 2-3x per day and his behavior being out of whack (increased stim's, less focus, increased non compliance),

Anyway, she had me write down three possibilities, which we then narrowed based upon stool frequency and form of the poop.
1. Fungal/Bacterial infection
2.  Acidity/Toxicity
3.  Low mB12 levels

We crossed off #3 immediately because he's on 120mg (yes mg, not mcg) of mB12 a day.
We discussed that his stools are solid, and dry - sometimes pellety, so we were able to cross off #2.  If his stools were loose or green, we'd be adding bentonite to absorb more acids.
Which leaves #1.  We are going to trial increasing Colloidal from 3tsp to 8tsp for 48hrs.  If we see no change, we are to go to 12 tsp.  We expect we'll see frequency drop to 1x or less per day, and behaviors come to a screeching halt - which should clear the way for verbals to come back up.  We are to keep doing this 48hr trial followed by an increase if no response.  If we get a response, we stay at that dose for a few days, and then trial dropping it back down to 3.

Now, I know that common sense tells us colloidal behaves like an antibiotic and kills everything in its path.  Donna's take is different, and I think i'm going to have to just take a deep breath and try this, because everything else she's said has happened just like she said it would. So i'm going to just have to trust her.  Per Donna, colloidal is NOT an antibiotic, its antifungal, antibacterial, and anti parasitic.   It does not kill beneficial gut flora.

She also thinks we'll be dealing with recurrent yeast issues probably for a while (afterall, this is what started all the problems, and for Dominic yeast is probably systemic), she thinks maybe a year (can I just say how cool it would be to really have an end point?????).  But that  once we get his gut healed, he'll be able to hold onto the balance.

She wants us to get to the point that we get down to a low or no dose of colloidal (after clearing this flare up), then anytime he has more than 1 stool a day, we add the colloidal immediately to stem off the fungal/bacterial infection.   Which is interesting.

I let her know that we had trial'ed soy a few weeks ago with no reaction, and that we trial'ed pizza WITH reaction.  She pointed out that not only does pizza have wheat and dairy, it also has tomatoes, which are tremendously cleansing (read: acidic, and cause diarrhea).  She encouraged me to make cheese by itself the next thing we try, after we get his yeasties under control.  Since cheese is made w/enzymes its already partially digested, and is an excellent sournce of good fats and calcium.  So cheese is on the horizon

Tuesday, August 30, 2011

Math is just not my strong suit.... 44%!!!

So, we've been getting offline contributions to the fundraiser, and I was just subtracting them from the total goal, but today realized that my percentage DIDN'T look right. When I add together my online and my offline totals, we are at... 44% of our total fundraising goal! So I have adjusted the total online goal to make it look like we've hit 44%. Which means i probably did something wrong, because math is not my strong suit, but, PEOPLE - between on and offline donations, we are at 44% of our original goal!  
 This means we are less than $300 away from hitting our halfway point. 
Less than $300 away from paying for a FULL month of therapy for Dominic!  And we still have almost 3 weeks left to fundraise as well as our yard sale!!
We are so incredible blessed with the people we have in our lives, and your generosity.  It may not seem like that is buying a huge amount, but this is helping SO much.

Friday, August 26, 2011

20% Reached, And here's that video I promised.

I was apprehensive to post this because while it is a wonderful example of how far he's come playwise, you can see there is SO much work we have left too on focus and self stimulatory behavior.  Kind of exciting and daunting at the same time. 

Turn the volume up on this...  All of the questions are ones he's been taught to answer at Alpine.  So this is what I call a scripted conversation, but at least its a conversation, ya know.  For a kid who 2 years ago had zero verbal interaction this is pretty amazing.   And this was the end of his play session a few nights ago, so I'm pretty impressed for the focus he did give me. 


Monday, August 22, 2011

Fundraiser, Restated.


 For clarity’s purpose… wanted to paste over here what I also posted at www.giveforward.com/teamdominic  (I’ve been editing the content over there pretty steadily and wanted everyone to be able to see it)

This is the first time we’ve publically asked for help paying for Dominic’s therapy.  The other fundraiser we’ve take part in – the Autism Walk each spring - has gone specifically to Alpine’s general fund.  Up to this point, we’ve been able to keep expenses balanced, but due to a number of unexpected house/car expenses in the last month we have had to start robbing the therapy account to stay afloat.   As a result of doing this fundraiser now, we will not be participating in the fundraiser part of the Alpine walk in the spring.   I want to make sure that its clear we are asking many people for small contributions – if we can get 230 people to each do $10, we have paid for a month of therapy.   I don’t want any one person to feel like they have to give hundreds of dollars.

The monies raised  will go to Alpine Autism Center as scholarship money specifically for Dominic’s therapy.   The check itself is being written by the Give Forward folks to Alpine Autism Center, and I will hand deliver it when I pay the monthly therapy bill  for October. 

Saturday, August 20, 2011

I have a video for you.....

I took some video of Dominic playing last night. I'm hesitant to post it, tho, because while it does show some conversation (albeit scripted), and interaction, and some eye contact, and some play, it also is kind of a reality check for how far we have left to go lots of sensory seeking, lots of eye contact avoidance, nothing more than 1 word, etc. I will swallow my uncertainty and post it when the fundraiser hits 20%. Please copy/paste/email out this URL...
www.giveforward.com/teamdominic
 

Pictures!!

Random pictures from the last few weeks.


All done with breakfast, can I go to school now?  First day of first grade.



Cuddling on the couch watching something with my favorite dog.  Who is actually tolerating the chokehold here (BEST dog ever)


Exciting independent play - for the first time in MONTHS, if not years, Dominic broke out the box o'car tracks that he got for his second birthday and set it up, and raced cars.  He's doing it again this morning.  Very good to see.

Friday, August 19, 2011

stream of consciousness blogging.

the meeting I had with our D11 SPED teacher on Tuesday was good.  Here're some of the things that we learned:

- they are woefully understaffed for para's this year, but Dominic will still be with him all morning (the whole time he is there).  Knocking on whatever wood keeps this up.   Next year since we're tentatively planning on him being there full day, he'll have a full day para because they'll do a staffing matrix end of this year w/their needs.

- He's got his own desk in his first grade classroom, in the back, near the table where he will be doing some of the ABBLS work.  the idea is for him to be doing some things independently throughout the day - we'll see how that goes.

- in first grade, they have a 2hr long reading chunk of time, a 2 hour long math chunk of time EACH day.  And then 1 hour every other day for science and social studies (they alternate).  And no Art.  This baffles me.

- Dominic gets to have lunch and recess with his age peers this year.  He didn't get to do this last year, so I'm pleased he gets to this year.  

- During reading time, apparently first graders take turns reading aloud.  The sped is going to rotate Dominic through and let the other first graders read to him, hopefully for enrichment on both parties, plus its got the chance to build some relationships.


Dominic's first week of school has been decent.  He seems to have moved right back into that routine.  Alpine, well, he's behaviorally a mess there, but we expected the transition month to be rough.  We will give it another week to even out and if it doesn't, look at adding back in some of the supplements we'd removed

Speaking of Alpine... when they were at their old location, there were herds of Deer and the occasional Bear around.  Ar the new location, there're no deer.  Instead there's a herd (family? Flock?) of mountain goats. Curvy horns and all.  And the occasional bobcat.  Yes, bobcat.  There was one that crossed the parking lot during drop off yesterday.   The therapists wisely waited until he was across before retrieving children from their cars.  Could you imagine?  "Kitty Cat!!!! Want Pet!!!"  *shudder*


No Alpine this afternoon, they have an inservice.  Since d11 is so tight on para's, they can't support Dominic for full days at all this year like they did last.  So he got to come home early today.  He went straight outside and played in the dirt.  He actually wasn't filthy, but soon came in and said Ba Ba.  I said, you want a bath?  YES.  So he got a bath.  

Our fundraiser is making progress.  As of this writing we're at 11%, which is pretty good for just a few days in.   I'm hoping to get a lot of people to do a little each, with the concept that if you were in town, we'd go out for a meal or coffee, and we'd probably each spend $10-$20 and have a couple of hours of visiting.   So I'm hoping the logic will flow that people have that $10-$20 for something related to us and could therefore pitch it in.  We'll see.  I'm also doing a stupid joke fundraising tactic on facebook.  For every 1% of our goal we reach, I will post a groaningly bad pun.   Also bouncing some ideas around in my head for a top donor prize (homecooked meal by me? private yoga class from Rod?  Handmade something or another from Dominic?  nothing concrete yet, but keep your eyes peeled).  Its really interesting, the iPad fundraiser kicked off much more quickly.  People are much more willing to donate to a specific, tangible thing than the never ending therapy bill.  I'm hoping that knowing we've set this fundraiser up so that the check itself is written to Alpine instead of us will help with that.  Here is the link.  Its also in the sidebar. 

Huge thank you's to our donors.  You really have no idea how much these donations help when added together. 



Monday, August 15, 2011

yay! D11 visit went well at Alpine...

Apparently, tho Dominic had a mixed day behaviorally, the hour or so that our D11 teacher and para were there was awesome.  Zero behaviors during that time, and very chatty.  They heard him use multiple 3 word sentences.... AND heard his newly mastered social question - when asked "where do you live" he said "colorado"

They were impressed and thrilled with his progress. :)

 So tomorrow, I'll get their version of how it went. 

(i'm just glad he saved his turkeyness for after they left)

This and That and the other thing…

D11 starts Wednesday.   Dominic’s D11 sped teacher and para went to Alpine today to observe.  Hopefully that went well. I’ve talked with them and while they are intrigued by the iPad, they’re also very nervous about it.  We’ll see how that shakes out.  We are going to pop over and say Hello to them tomorrow on our way to Alpine, drop of the pile of school supplies, and meet the 1st grade class room teacher.  (Dominic will have the same para as last year, but since first graders have their own desks, he’ll get his own desk, and have times during the morning that he’s working independently.  Will be very interesting to see how that goes).

We had a Unique Healing followup on Friday.  Dominic’s doing great, but she was just frustrated that we hadn’t gotten his pooping frequency down to under 2x a day.  So we’ve done some tweaking (short term use of Colloidal Silver to kill a hypothesized bacterial/fungal infection), and it was supposed to decrease frequency overnight. It did!  Exciting.  We’ll have him taking it just for a few weeks, then will phase off of it.  He did have a really good weekend behaviorally and verbally, so it’ll be interesting to see how that goes.  Infections of any sort in the gut throw off behavior.

Dominic had his regular 6 month dental checkup today.  Apparently he did AWESOME – no wiggles, let them polish, floss, AND Xray him.  Very pleased about that.  The next teeth that are going to be evicted, per the xray should be top fronts.  We’ll see if they follow instructions.   Unfortunately, the dentist discovered that the tooth enamel on the molars that have just finished coming in in the back of Dominic’s mouth is very weak, and he’ll have to get crowns put on them (wince).  The dentist is willing to try conscious sedation since Dominic’s done SO well the last couple of times in the dental chair.  So we’ve got to find the money for our portion  and get that scheduled.  Hoping to do it on a day that there’s no school/alpine to be missed, but will have to see how the schedule comes together.  Odds are I’ll be taking a vacation day that day.
Dominic's Therapy is very expensive and we are still unable to find scholarships, grants or other money to pay for it, so we are holding our own fundraiser so he can continue to go through the therapy that helps him so much.  Its over at the side and below






Medical Fundaising Made Simple

Tuesday, August 9, 2011

bottomless pit.

Dominic had a bowl of chex, a sausage patty and a banana for breakfast.
At 10am, because I had to get on a bridge call from home that was going to run past when I needed to get him fed, I prepared a plate of vegetables and chicken for him.  He INHALED it in 10 minutes and asked for chips.  I gave him a PILE of tortilla chips. They were gone, plate in sink, and tray table put away when I peeked out at 10:45.

And now he's come in telling me he's HONGWY.

Monday, August 8, 2011

Musings on a post...


Apologies for the lack of posting, as my mother pointed out yesterday.  We’ve just been doing same old same old – finishing out the summer. Dominic starts D11 back up next week.   Nothing tremendously exciting going on.

So, I’m going to heavily quote a blog post I just read, because it gave me goosebumps and it needs to be spread far and wide.   The whole post is worth the read, but here are my comments directly regarding Dominic and our situation, between her quotes.

“I know we do make some great connections and progress here in the autism is treatable community, but it’s going to take more than just our little village to set things right for our children.  We never should have had to work so hard.  We never should have ever have had to band together.  We never should have had to think, eat and breathe autism or vaccine injury or environmental toxin exposure.  But, it is daily that we work so hard, and band together, and eat, sleep and breathe about their diagnosis…”

I cannot count the number of people who are amazed at the facts I’ve picked up since Dominic’s regression.  Its because I’m spending 5-10 hours  a week reading studies, reading parents boards, reading articles… all trying to find the thing that will help Dominic.   Dr K rolled his eyes last time I was in there and I mentioned that I’d seen xyz reaction discussed online.  Thing is, we talk.  We compare notes.  We are not allowing our childrens health to be only managed by someone with the letters MD behind their names, we are educating ourselves to take back this role.

“..DeCock’s wrote, “… The Scientific American suggests that soaring rates of autism are linked to our constant exposure to toxics. Again, we pay an enormous emotional, practical and financial price to deal with the increase in this disease...”
When I became a parent of 1 in 166 children affected back in the early 2000s (which is currently quoted as 1 in 91 children diagnosed), I also became a vocal member of the “we” that DeCock says has paid an enormous emotional, practical and financial price of the disease.  For those out there who don’t know what “we” are up against because they might not directly be involved in the caring for a child on the autism spectrum, I would like to clarify who I believe the “we” is:
WE includes countless (and increasing) numbers of families going bankrupt to care for their children affected by that old pesky exposure to toxins (aka, a diagnosis that eventually gets labeled as autism).  If you don’t believe me, be brave and ask one of us parents how much it costs to care for our children for just one month.  It’s no small change, and it’s a lot more than you think.  Go ahead and ask. I dare you.”

You don’t have to ask, I’ll tell you.  If we were doing the full recommended amount of therapy, we would be spending $5k a month between therapy and medication and supplements.  We are only able to do half the recommended therapy, so we’re at about half that. Out of pocket.  Every single month.   I can stretch a dollar until it begs for mercy, but when things happen (like the clutch going out this weekend to the tune of $1100), we get very very nervous.

“WE includes countless (and increasing) numbers of families who are tired, both physically and mentally.  We are tired of the rotten looks, the unwarranted advice and the lack of compassion from family members (yes, family does turn on many in our community).  Some neighbors understand and pitch in, but those nosey shoppers, untrained school district employees or lackadaisical medical personnel who think it’s just bad behavior our kids are suffering really get us down.  My child didn’t choose to be this way, but others sure as heck can control their hurtful words directed toward him.”

Fortunately, Dominic’s issues are much less about behavior than they are about communication and fine motor skills.  Dominic only has a few behavioral issues each day anymore (tho some of them are doozies.  This weekend he butchered a spider plant while jumping off his trampoline to grab for its leaves… ).  It’s the speech, tho, that we’re struggling so hard to get back. He is still not where he was verbally pre-regression.  I’m hoping that when we start ST back up in a few weeks at school, that they’ll have decided he’s finally making enough attempts to speak that they can start working on his articulation issues because he has major problems with f/v/th sounds.   We do get the unwanted advice too, which is frustrating, because until you’ve walked this with us for a few weeks, you have no real idea what is going on.

“WE includes countless (and increasing) numbers of families who have turned to state assistance programs specifically designed to help.  But, we are turned away because of wait lists, budget cuts, misfiled paperwork or unreturned phone calls.  When that happens, and that happens to many of us, the emotional faucet of stress is in full stream because honestly, sometimes there really is nowhere else to turn in a time of crisis.”

Dominic is on a waiting list for the Medicaid CES waiver.  We’ve been on for 2 years and probably have another  3-4 before we will be even close to getting it.  Every 6 months, we get a phone call to see if we still want to be on the list (um, YES), and last summer we had the ridiculous IQ test we had to do to keep our place (hi, how can you actually do an IQ test on a non verbal child).  Frankly, we’re not holding our breaths that we’ll be able to keep the ship afloat until we get the waiver. What will likely happen is we’ll have to stop ABA therapy, and do the school district full time until the waiver comes in.  And then hope he still qualifies.

“WE includes countless (and increasing) numbers of families who continue to beat their heads against the wall because if we don’t care for our own children, no one else will either. True, you have to ask someone to help you out first, but who else can a parent trust to wake up early to make the GFCF meals, to clean up the poop smears on the walls again, or knows how to calm the sensory overloaded child who can only calm himself by hitting his stomach over and over again? Who else is willing to babysit a 14-year old in diapers?  Who?!  It’s no joke when groups of parents start talking about creating a farm or commune or buying a ranch to house several autism families.  We all understand each other and have already gone to the ends of the earth and back for our children.  It would make sense to band together in a long-term living situation.  But, where will the money, time and resources going to come from to create this autism safe house for many, this utopia of hope?”

We are very blessed to have several regular babysitters who can do respite care for us.  Who we trust.   Other parents, when seeing what we do all day have expressed shock and awe over the level of supervision we provide, so we are not confident that Dominic would be safe with them. I do have to admit the idea of an Autism family ranch ... with really high border fences... is appealing.  At least we'd all speak the same language.


“WE includes countless (and increasing) numbers of parent-turned advocates who didn’t expect their life to be completely turned upside down because of their child’s diagnosis.  Sure, some parents might have knowingly adopted a child with autism, and my heart swells with pride for them being so giving. But, many of us didn’t go to the doctor’s office asking for the contents of that vaccine vial to trigger our child’s reaction, or the allergies, and the attention and behavior problems or their autism.  We are on a new path because of those reactions and are ready to pay it forward.  This is the very reason I continue to share own my experience--so you don’t ever have to.”

I beg every woman I know who is pregnant to do their homework on vaccines – and if you’re going to get them, ask these questions first.  We can tie Dominic’s regression / brain injury to getting his MMR while in full yeast flare.  No one told me cracked and bleeding on the outside meant cracked and bleeding on the inside, so I tell everyone. I never wanted to be an advocate, or carry around a soap box to stand on. But this is what I do now.