Week of Meetings, oh my

On Tuesday, we had our monthly meeting at Alpine. We really like this feature, because it gets us lots of tips on how to do things at home, and handle behaviors. Highlights this time are that Dominic's eye contact vastly improved during the month of October (which correlates to the Cytoflora supplement we added in), and that they're concerned about his colors and shapes. he's not getting the concept of something being a color or shape. So they're going to try teaching it a different way, and then maybe take a month off from the programs.

This morning we had our parent teacher conference with his preschool teacher. It went pretty well. She did an assessment on him called the AEPS (Assessment, evaluation, and programming system for infants and children ages 3-6) which covered a number of areas. This is how he scored, which we are actually pretty pleased with
Fine motor skills: 30th percentile
Gross Motor skills: 60th percentile
Adaptive skills: 69th percentile
Cognitive skills: 16th percentile
Social communication skills: 15th percentile
Social skills: 46th percentile

Given that the beginning of June, his OT's peabody tested scored him at less than the 1st percentile for fine motor skills and aged him at 27 months, with specific areas of concern being social interaction and age appropriate visual motor skills, I'd say we're making progress.

On an aside, we got the first round of blood pulled this morning for Dominics pre-OSR tests. They only took 3 vials, and we will go back next week for more to be pulled. Last year, they pulled 8 at once, so we're not really sure why they are splitting these tests up. Whatever. Tomorrow, I'll do Dominic's provoked urine toxic metals test. We're going to wait until next weekend for the stool test, I think , because he's only just now starting to ease off the flu induced diarrhea. That means that we won't start OSR until after we do that test. Which I'm okay with.

random tidbits

- Dominic has taken to feeding the dog. Shanti's got this habit of licking every molecule of potential food out of his bowl, when its already empty, and generally looking pathetic. 2 days in a row now, Dominic has looked at me, and said "HONGRY", and i've said, yes, he is, you can feed him. At which time, Dominic goes into the pantry, scoops up a cup of dry food, and puts it in Shanti's bowl. its cute. So, he's observing the dog, understanding and being concerned that the dog is hungry, asking for permission to feed him, and the following through.

- I put Shanti's sweatshirt on him this morning (yes, the dog has a sweatshirt) and Dominic was mightily puzzled. The dog is a bit offended, but he just got groomed at its cold outside today.

- Dominic's been fever free since Thursday, so I sent him to school. He does still have the GI stuff and a cough, so hopefully he does pretty well. The plan is to get back into the workout groove tonight, so to go from Alpine to the gym. But that will depend on how he feels. We're supposed to do a bunch of testing the end of this week, and if his gut doesn't heal back up, i'm going to skip the stool test. No sense in doing it at this point, all thats coming out is bile and undigested food. It was starting to firm back up yesterday, but we're back to bile today. FUN.

oh,. the cuteness

Dominic gets distressed when we drop Shanti off for grooming, and is always anxious until we go pick him up. here's a picture of them today after we retrieved Shanti. Pardon the zombie eyes, please.

And we're pretty much over the flu now.

Dominic has been fever free for 24 hours, and is back to normal appetite and energy levels, so we're calling the flu over even tho he's still got the GI stuff and has developed a barky cough (which is fully under control with my homemade cough syrup, at 1tsp like 3x a day thankyouverymuch). We ended up not doing TamiFlu for him, because the side effects were just too harsh to risk it.

Rod and I have both taken the tamiflu, and neither of us has had a horrible go with this. My temp hasn't gone over 101, and i've just got the fatigue and gooey feelingness going on. Rod's never run a fever, and just is a bit gooey. So far, very impressed with the Tamiflu, given how badly I do normally with viruses

So far, no signs of a regression in Dominic aside from a clear short fuse because he didn't feel good. We will continue to monitor. His temp never went over 103.4, and we only had to medicate 3 times, with kids motrin (dye free). (for the record, I only medicate kids fevers over 102, and adult fevers over 101)., We actually left the house today for the first time since Monday (for Dominic) and Tuesday (for me) and had lunch at Mimi's (they'll do allergy free for us). Dominic did an excellent job of sitting in the booster without arguing, listening, using utensils and making eye contact. Minimal words, but thats not suprising, it was really loud in there.

Only big plans this weekend are to take the dog for a haircut. He's gotten way too shaggy.

We have the flu

H1N1 per the doc. But there wasn't a swab, so really, we have a virus that is behaving like the pig flu (everyone run, its the aporkalypse!!!!!). oh, right. Its the flu.

We do have tamiflu, but are not giving it to Dominic because of side effects. So far he's eating, drinking plenty of fluids, we're managing the fever w/minimal motrin doses. He's got a bit of a cough starting, but I can manage that with my homemade cough syrup, it'll cure anything lung related. We have also broken out our antiviral arsenal and are including Oscillo, ViraStop, Super Immune Plus, Olive Leaf Extract, and Goldenseal, as well as garlic laden homemade chicken soup. I'm taking Tamiflu myself mostly becuase I really get knocked down by virus's (remember that 6 weeker in July and August???) and i'm willing to deal with the nausea from tamiflu to minimize its impact. We have Tamiflu for Rod, and it'll be up to him if he takes it.

So, yeah, he went to preschool and Alpine Monday of this week and won't be back until Monday of next week at the earliest. We don't want to infect the masses.

What a good couple of days.

Yesterday and today both, Dominic rocked the therapy at Alpine – yesterday with a record of 124 words in his session, and today with 115. Today he was “perfect” for eye contact, which means that every time his name was called, he gave at least a 2 second glance. He also several times responded to his name being called with a “what”

Then today in OT, he was the most sociable and chatty that the therapist had ever seen him.

We’re definitely on an upswing.

We did just get the September report from Alpine, and overall it was good – another notable increase in speech (and with the numbers we’re seeing now, I’m excited to see the October report). Behaviors are still mostly under control. Programs are being mastered like crazy. He’s making good progress. He’s added a 4th therapist to his lineup, and I’m thrilled to still be seeing such good progress. Normally a new therapist makes him try to be all manipulative.

Remember, we started the gut stuff – adding oil of oregano (for bacteria), aloe juice, and cytoflora in late August, phasing it in, and ramping it up slowly. He’s been on the full dosage of everything now since Sept 18, and we switched the dosage around so he was getting it all the cytoflora a little before dinner about a week later. So we’ve been holding steady on the instestinal mending sup’s for almost a month. The frequency of yeastie looking poop is decreasing. He had some today for the first time in 7 days and before that it was 5 days. Before that we were at about every other day. So progress, definitely.

And as an extra bonus, we just got direct depost from insurance for 70% of August's Alpine claim. fun stuff.

best birthday present ever.

So, almost a year ago, Dominic had his second regression and stopped even trying to say I love you. And thats the point in this whole adventure when I got truly angry and starting channeling that anger into figuring out what to do.

Tonight, which is by the way, my birthday, we got home from our dinner and the hockey game, sent the babysitter home, and got Dominic up for his 10pm pee break. Tucked him back in, and said I love you... and - he unprompted - albeit very slowly - said "Love you too"

This represents a HUGE amount of work on his part, and he's come close to doing it a couple of times, but finally he put it all together independently with absolutely no prompting. It may just be three words and they may be spoken very haltingly, but its a giant step for him.

Small celebration in order...

The gym daycare, where Dominic has been going since BEFORE the first regression... where they do such a good job with him - today, one of the ladies said when I picked him up - "he's really starting to use more words instead of being so quiet"

we have GENERALIZATION. This is a good thing.

Blog update, We’ve had a very even keeled week.

I realize its been a week or so since I updated the blog on how Dominic is doing, and the reason for that is that we’ve had a very uneventful week with no major fluxuations either good or bad.

I do think we are finally past the yeast die off stage from the Cytoflora (only took 2 full weeks) because we haven’t had yeastie looking poop in a couple of days. He’s continuing to get nice comments from teachers and therapists, but nothing off the charts fantastic. As far as what we’re noticing at home, we’re getting a few more words out of him, but its clear by the time we’re home with some down time that he’s just plain tired and doesn’t really want to talk.

We’ve had some struggles with him not wanting to get out of the car to go into either school or therapy, and needing lots of kisses and reassurance, and are hoping that’s just a phase. We know he’s tired. We also know he’s got a lot more hard work to do.

We have reduced his folic acid supplement to only be given on mB12 shot days (currently M,W,F) with the idea that as his gut heals and we no longer have to use the “try to keep a bucket with holes in it full” approach to supplementing, that we’ll be able to go down to just 2 shot days a week and then maybe one. The next supplement that we are going to move to shot only days is Homocysteine Supreme (the last piece of that methylation cycle that includes mB12, and folic acid), and we’ll probably start that this weekend. Presuming we don’t see additional hyperactivity (which we haven’t seen w/the folic acid reduction), then those three supplements will all only be done on shot days.

We’ve also reduced his Travacor and frankly haven’t seen any difference at all. So presently, I’m thinking we’re going to stay with half a capsule until we’re down to about 5 left (the time it would take to get another bottle delivered if we needed) and then stop all together. We started it because Dominic was randomly hitting children at school and in various gym day cares, and as soon as he went on the Travacor, the aggression stopped.

We’re gearing up to start OSR in November. Before we do that we’ve got a bunch of tests to do. We’re planning on doing those tests mostly around the weekend of the 23rd of October (we need to have them shipped off, run, and returned in time for our discussion with Dr Kucera mid-November). I’ve been spending a lot of time trying to read about peoples reactions to the OSR because it is a relatively new product (about a year old, as far as I can tell) and to see if there’re any precautionary things we need to do. So far, it looks like, similar to enhansa, we need to go low and slow – starting at maybe ¼ of a capsule per day, and increasing it by 1/4cap weekly until we get to 1 capsule a day. We also may need to add molybdenum to help his body process the sulfur. Both of those questions, I’ll bounce of the doctor prior to starting. So far, I’ve seen a bunch of people have excellent responses to OSR, and a number of them have major die off reactions that made them stop entirely (hence the go low and slow advice). I still want to try pirecetam after we get Dominic’s gut cleared up, and it will be on my list of things to discuss with the doctor in November.

Couple of quick things…

Last night we had our regular OT appointment with the therapist Dominic has been seeing for 15 months now. She’s wonderful with him. She made the comment afterwards that he’s come a long way in his exercises crossing the midpoint of his body – he will now cross his right hand over to his left side and pick something up independently. However, he will not do left had to right side. We want him to be able to go both ways – because crossing midpoint physically is the outward manifestation of the neurological pathways between his brain’s hemispheres firing. And we’d like them to all be firing. But we’ve made good progress.

Then last night, he wet the bed. We think that this is related to the yeast die off symptoms, but I can’t find the link that I saw before where it discussed it. Regardless, it happens really rarely, but last night was odd in that I put him to bed at 7pm, made sure he went to sleep, and at 9 when I came back downstairs to do something, I realized his light was on. He was almost asleep, and drenched as were the sheets, mattress pad and bedspread. So we changed him, and his bed, and he stayed asleep. The only other times he’s wet the bed, its been much later at night. So, slight oddity there. He didn’t have a lot of water with dinner, either (tho he may’ve drunken the bath water). He was also really sweaty all over.

This morning, when Rod picked Dominic up from preschool, the teacher told him that Dominic had his best day yet – lots of spontaneous labeling and requesting, best eye contact she’d ever seen from him, and that he was very engaged in the classroom activities. Her exact words were “whatever you’re doing, don’t stop”.

Yesterday I got an email from another Mom at Alpine letting me know that she’d seen Dominic very engaged in their outside stop/go game and how cool she thought it’d been.

So we’re seeing some very nice trends from multiple places. I think its way too soon to get all excited, but it’ll be interesting to see if it continues.