Saturday, January 23, 2010

well, thats new.

Its been a mostly uneventful, moderately cranky-boy'd weekend.

however, Dominic just did something I've never seen him do.

Back story - i rearranged his bedroom this morning entirely. Two reasons, his bed (against the outside wall in the full basement - was a little too chilly, and the light switch was right about the bed, so it'd become automatic for him to just turn on the light in the middle of the night if he was momentarily awake (yes, we have found him sound asleep w/the light on).

So he just went in and saw the new arrangement. He wasn't upset (i was concerned he would be) and i handed him the little dollbaby that he snuggles at night, and took her, put her head on the pillow, covered her with his fleece cars blanket, and said SLEEPING. then kissed her. and left.

he used a verb, appropriately. this is HUGE.
plus the pretend play aspect, also huge.

Thursday, January 21, 2010

Alpine Parent meeting today

We had a good meeting at Alpine today. Dominic is continuing to make good progress on all his programs. We definitely saw some regressions the 3 weeks we had him on OSR, and are starting to gain lost ground back. Dominic just doesn’t seem to do well at all with any synthetic supplements. If when we see Dr Kucera in Feb. he continues to push for chelation, the only one I’m going to agree to would be NDF from Bioray, and we would probably want to follow their entire protocol and do liverlife, as well as get his urine ph balance figured out. We’ll see. I just really think that synthetics aren’t going to do it for him. Bioray uses the same technology in NDF (on chlorella) that they use in Cytoflora (on probiotics) and we LOVE cytoflora. So we’ll see.

We talked some about how Dominic is a unique case at Alpine, and as a result they’re having some challenges getting him to learn. He’s unique because he had skills and then lost them where as the majority of their kiddo’s never got skills to begin with. The holes that Dominic has are weird – he is having a HORRIBLE time receptively identifying colors and shapes (and that means, that when given a field of options, someone would say Give me Blue, he would give them them blue object – or give me a circle, and he’d give them the circle). He can match until the cows come home - so we know he's not color blind, but receptive identification just isn’t there. However, he’s having no problem receptively learning his letters – generally if a child doesn’t “get” the basic colors and shapes, they don’t get letters. So the gaps in his foundation skills are funky. He’s also stubborn. They’ve had to limit the special reinforcers (potato chips and the water table) to just the Colors and Shapes programs, and they’re still trying to find efficient ways to get the concepts into his head.

We talked about his DRAMA lately. The quivery lip and tears if something is presented firmly… The “NO NO NO” that he’s saying when he doesn’t want to do something, the hiding his head if he’s mad at you. Really, he never went through the normal 3 year old drama stuff, because he was busy regressing. I think he’s now going through that set of developmental hurdles. So we’ll see. He’s overall a very mellow child, tho.

Stimming wise, she’s trying to come up with a good redirect for the growling. Because its annoying. Its intermittent, tho. The chewing on his clothing is almost gone, that one directly correlated to OSR. And he’s still chewing on his fingers. He won’t let us apply bandaids, either – they offend him.

Amber is going to come with us to the IEP the beginning of March, and we’re starting to talk about what we want on it, and how yes, those goals are going to require him to have lots of support. That’s okay, they’re goals, not things he can already do. And its basic pre-academic stuff – letters, numbers, shapes, colors, counting, reciting the ABC’s, and being able to recognize and write his name.

Monday, January 18, 2010

Neurologist update

Well, that was a fairly uneventful appointment. We reviewed Dominic's year. Dominic interacted and played ball with Dr Grabert. He built blocks (using both hands, no preference it seems), and generally was much more sociable than last year. Dr Grabert agreed we were doing the right stuff. And should we decide we need the diagnosis changed, he is fine with that. He's a long time player of the insurance game, apparently

I asked if Dr Grabert had any opinions on the studies out there these days showing improvement in speech for nonverbal kids when using alzheimers drugs. (specifically namenda and donepezil) and he had. He's willing to write us a 'script after we get Dominic's tummy cleared up and donepezil goes generic (which he said would be this year, I just checked the FDA website, and it went generic last month). We'll discuss it with Dr Kucera. The thing is the most common side effects are GI related, but there seems to be a transdermal option, which would skip the GI tract entirely. So its certainly worth discussing.

Thursday, January 14, 2010

Insurance decision...

So, I've had this lovely woman at our new insurance company trying to find out if we would be getting coverage this year for Dominic's therapy at Alpine. She and i have been talking pretty much since Jan 2. The question was, since Dominic's diagnosis is Aphasia, which is medical, would this therapy - that they count as behavioral health - be covered. The answer that came back is no. The only diagnosis that this insurance will cover any of this therapy for is a straight autism diagnosis. And that would only cover 60 visits per year, up to age 6. I believe she was actually in tears when she called me back, because I told her the whole story and how well he's been doing at Alpine.

So the option is out there to get his diagnosis changed. But if we did, it would only buy him 4 months of reimbursement, and then be impossible to remove from his medical records which could mean issues down the road.

Monday, January 11, 2010

we *told* you his gut was a mess.

I got a call on Friday from our favorite medical assistant over at Dr Kucera's office. She finally had gotten Doctors DAta to fax over the results of the stool test (which i should get in the mail today...) and they were a mess. Big Shock. We knew from what was coming out that there were major problems.

Good news first.
No parasites or ova were found.
No red blood cells were found.
No yeast found

Now the bad stuff.
Tons of gut flora imbalances (so bad bugs that there were significant numbers of)
of the good bugs, he has NO BIFIDO. In July his Bifido numbers looked great, so this is significant. my personal guess is thats what the H1N1 did to his gut.

The IBD markers that were high enough in July to raise Dr Kucera's eyebrows have now tripled. (thats the lactoferrin and lysozome) The IgA (inflammatory marker) has also more than tripled.

Only thing that suprised me was the complete lack of Bifido. Nothing else suprised me. The gut bug imbalances totally explain the hideous, paint peeling smell and awful color.

This is what we're doing about all of this.

1. Ww're done with the biofilm protocol. We may discuss adding it back in later, but if we do, i'll be asking for the interfase without EDTA (as opposed to the interfase plus with edta), because i think his gut can't handle oral chelators running through it.

2. We're adding a specific Bifido probiotic

3. We're adding GI Revive

4. We're staying on the Enhansa (curcumin), Cytoflora, Aloe juice, and prune juice. We may even increase them.

His poop is still looking better. Not perfect, but better. We are having at least one solid looking, normal poop per day. The diarrhea, when he has it, is no longer so explosive we hear it 3 rooms away,and its down to like 1-2x per day instead of hourly.

We're still on the OSR. we just went up to a full capsule m/w/f this week. Still not sure if we love it, we're not seeing gains. We are seeing stims which is apparently normal in the beginning. Right now, those stims (he's chewing fingers and clothing, and growling) are easily redirected.

edited to add:
I may be revising the OSR thing, too. My gut says to stop it entirely. Last weeks school and alpine reports were that he was distracted. This morning, his preschool teacher said that he was kind of in a fog. 'Kind of in a fog' is a warning bell to us. we'll see how he does at Alpine this afternoon and tomorrow, next dose of OSR should be Wednesday, but it may not be.

Thursday, January 7, 2010

Quick updates…

>We’re so glad Dominic’s back to both preschool and Alpine. The break was LONG. Reports back from both are that he’s easily distracted, but coming back to focus and routine pretty quickly.

Tummy wise, we have good poop! Several days of it now in fact, so I’m comfortable in saying we’ll be holding on the current supplements for a few weeks before testing adding back in biofilm protocol… Doc’s office got back the stool test, which he’s reviewing and then I’ll get a copy, will be interesting to see if there are any gut pathogens.

Speech wise, he seems to be holding steady, maybe a little less… some days are better than others.

Stim wise, he’s growling a lot, and driving us nuts. And he’s started chewing his clothing. Which is also annoying.

He’s also off melatonin now, which is nice. He’s back to falling asleep with no additional help aside from good routine. We like this.

Saw the Dentist yesterday for a surgery followup, and not only is everything great, but our dental insurance paid more than expected, so they did 8 fillings instead of 6 and instead of us having to pay anymore out of pocket than we already paid, we’re getting like $30 back. The anesthesiologists have billed the health insurance, but the hospital has not. Odd.

Also had our first OT appointment of the year yesterday. Because our new insurance is only going to cover 30 visits this year, we’re going every other week during the school year and then will do weekly in the summer. We have a whole list of things to do at home with Dominic to further facility left-right brain crossing, fine and gross motor skills, etc.

Insurance company wise, I’m fighting united healthcare still for the last couple of months of 2009. I’ve already started talking with Anthem about 2010, and gotten myself a single point of contact over there who is researching to find out if we’ll have coverage. She’s not clear based on the wording in the contract how its going to come down. She’s very nice, and I have to say I’m more impressed customer service wise by Anthem than I ever was by united healthcare. I actually have 3 direct phone numbers to Anthem reps, which is 2 more than I ever got from United. I have last names, too. So, there’s a chance they’ll pay, there’s a chance they won’t. Either way, we are seeing such improvement from just 7 months of Alpine therapy that we will figure out a way to make it continue. Our general goal is half days the rest of the school year, full days Summer of 2010, half days the school year of 2010-11, and full days that summer of 2011 then mainstream him in first grade. We just have no idea where he’s going to be in a year… and are making just educated guesses. There’s a chance we won’t go that long at Alpine. There’s a chance we’ll have to go much longer. One way or another, we’ll keep him there as long as he needs it tho.

Monday, January 4, 2010

The Scoop on the Poop, part 2.

Okay, so, here we are 8 days into prunes. Right away, we noticed fewer episodes per day - down from day 8-10 to 2-4. And we noticed a distinct color change from greenish grey to brown.

But it was still explosive. And while there was less of it, there was still undigested food.

4 day weekends really screw with routine... especially when routine is come home from Alpine, give Dominic his biofilm supplement immediately and hard enough to follow.... So I forgot on 12-31. And again 1-1. By Saturday I figured, lets give this a week off of biofilm and see what happens.

Today... today in the morning, he had the usual explosive brown liquid. but Tonight.... we had NORMAL (albeit soft) Formed Poop. NORMAL! for the first time since OCTOBER 18. (i know this because i track poop in my spreadsheet.)

So... is it the prunes, or is the biofilm protocol, or was it both? And will it happen again tomorrow. stay tuned.

And, in other non related news, tonight was night #3 of putting him to bed without melatonin. so.. perhaps we can stop that too and only keep it around for when he really is insomniac-ing.