Friday, February 26, 2010

gearing up for IEP on Monday...

So we’ve been gearing up to have our annual IEP with the school district – its scheduled for Monday. I’ve been digging through all the various progress reports and such to come up with a list of appropriate goals to request. Here’s what I’ve come up with.

Expressive Language

Independently
…Use vocabulary to label objects in categories of animals, clothing, toys, food, common objects.
…Label upper and lower case alphabet letters and make the sound of each letter
…Label 8 colors and 6 shapes
…Count to 20 and verbally identify the numbers 1-20 without prompting
…Use quantity words appropriately, such as big and small, more and less, etc.
…Label ___ emotions in himself and others
…Label ___ verbs
…Ask “when”, “where”, “why”, “who”, and “how” questions
…Use appropriate gender pronouns
…Answer basic questions about himself (name, gender, age, grade, teachers name, parents names, address, phone number…)

Receptive Language
Dominic will independently follow 2-3 step directions out of routine
Dominic will receptively identify his name in printed form
Dominic will receptively identify ____ verbs
Dominic will demonstate understanding of 10 qualitative and 10 quantitative concepts
Dominic will demonstrate understanding of spatial and temporal relations concepts

Motor Skills (fine)

Dominic will independently draw all 26 letters of the alphabet, numbers 1-20, and 6 shapes with a tripod grip on writing utensil
Dominic will independently write his first and last name using upper and lower case letters
Dominic will manipulate buttons and thread zippers

Social / Play
Dominic will turn take with peers
Dominic will engage in cooperative, imaginary play
Dominic will actively and appropriately participate in small and large group activities

In addition, I took all the data we've been given on a monthly basis from Alpine, and put together pretty graphs that cover the time from June-January, I pulled one day per week from the Alpine reports so we could see trending of Dominic's speaking. They're very encouraging



Tacting is labeling the environment - and these numbers are the number of spontaneous tacts Dominic has made in the 3 hours he's there per day. Its jagged, and you can see his major poop problems in November and December reduced his level of tacting




Manding is requesting items / making demands. Nice upward curve here, too








Friday, February 19, 2010

FISH!

A friend of mine is downsizing from house to RV to pursue a dream, and one of the things she listed as getting rid of was a fish tank with fish. I knew Dominic would ADORE it (frankly the only reason we haven't done it before is that i tend to kill fish and didn't want to make a huge investment if i was just going to kill them off, but yard sale prices are much less of an investment).

So I picked it up today. Brought it home, cleaned the tank, resettled the fish, and then brought Dominic home.

He's been sitting in front of it for 90 minutes now. Its better than Disney!





The dog's QUITE interested too.




In other news, today was a gymnastics day for Alpine - they went as a group and did trampolines and such. Dominic was apparently upset when they left, but instead of throwing a snit, he said to his therapist "I'm sad". I cannot think of the last time I heard him say Sad, so we'll see if he duplicates it at home, but wow, another adjective, and used so appropriately.

We're continuing to very slowly ramp up with LiverLife, and hope to start NDF+ next week. I've just made my first batch of homemade lemonaide (fresh lemon juice has an alkinalizing effect on the body, and Dominic's slightly acidic per the ph sticks we've been using in the morning). I'll slowly increase the amount of lemon and decrease the amount of honey. but he likes it. :)

Thursday, February 18, 2010

Weird day and other odds and ends.

So yesterday was a very strange day for Dominic. His morning preschool teacher described him as very stimmy, and hyper. He went home for lunch and was very untalkative.

Then he went to Alpine and shattered his previous FOP (free operant pair = verbal attempt) record by almost 100. He had 260 FOP’s in the afternoon. He came bouncing out riding on the therapists back. They said he was definitely high energy, but very compliant and chatty.

Then he went to OT, and she was very surprised at one shift – up to this appointment the toy she used for a reinforcer had to be completely put away out of sight before he’d sit down and work – this time he was fine with it right beside what he was working on. Big shift in his ability to focus.

Dominic’s tummy took a shift back to diarrhea for a few days this week, so we tried some charcoal. Didn’t work. Took out the prune juice, and we’re back to good looking stools. I actually think he’s just getting used to the liver life. We pulled the milk thistle sup’ he’d been taking at lunch because LL has milk thistle in it. We’re now keeping a close eye on his first morning body PH, both saliva (shows what his whole body is right at that moment, and should be around 7) and first morning urine (shows what his body is excreting, which we want to be around 5.8-6.2, to show that he’s pulling acids). Right now they’re reversed, the urine was 6.8 and the saliva was 6. So we’ll be working on alkinalizing his diet (probably with a lot of lemon in his water to start with). Keeping his body ph around 7 is supposed to make him feel much better. Hope he likes lemons.

We just got an email from Dr K’s office, apparently they are now partnered with a place right next door to them that does Hyperbaric Oxygen therapy. Which we’re very interested in, but is probably going to be cost prohibitive. I’ll look into it and we’ll see.

I’m walking in the Alpine Autism Center 5k in April and am soliciting sponsorships. You can click the link above if you’d like to help with that. I set a high goal, but I really think that I can find 100 people in my life to donate $10 each. Actually, I only have to find 91 people to now… big thanks to those who already have.

Monday, February 15, 2010

Late update on Dominic’s party and musings

Note to self, its worth every penny to have someone else handle the details. Literally, all I had to do was show up with cake and birthday boy. And for not much more money than I’ve spent before on party food and decorations at home.

When we arrived, early of course, the party coordinators whisked the cake out of my hands, sent Dominic to go play with the other 5 year olds and told me to go sit in the cafĂ© and have a cup of coffee. They then proceeded to decorate the room (in the CARS theme, which they happened to have on hand, no extra charge to us). We wandered back down a few minutes before the scheduled start, and greeted people as they arrived. The party coordinators sent the kids to the gym to play (climbing wall, hula hoops, floor scooter things, bouncy balls… then they did group games of Dodge ball and they played with a parachute thingy) for about 45 minutes. Then they did a treasure hunt in the playgym (which is this multi level thing with a slide, and trampolines, etc) for another half an hour or so. Then we moved into the party room where the kids all got served sorbet (yes, they did dairy free for us) and the cake I’d made, and lemonaide. Then the party coordinators coordinated the presents, and made me a list of who gave what. Then they cleaned up, including washing my dishes.

Dominic got lots of wonderful presents. Thank you all for the things you got him, he has played with everything already. After we left, he fell asleep almost immediately, he was that worn out from the playing.

He did a great job of interacting with the other kids in the play areas (it was about 1/3 special needs kids, and 2/3 neurotypical) – he actually PLAYED and shared and had no meltdowns. Actually, there were no meltdowns at all from anyone, which is excellent. Dominic also did a really good job of staying seated for the cake and ice cream, and of eating it without being distracted by all his friends around him.

As hard as it is for me to watch him struggle to interact with the kids who he did great with prior to his regression, I think it was good for everyone that he did, if that makes sense. Its hard to realize that kids a year or more younger than him are signing their names to cards when he doesn’t have the fine motor control to draw letters yet. (his teacher says he’s close to getting a D, but still… he just doesn’t have the fine motor control). Its also hard to watch the other kids be able the speak to each other when he just cannot. When he’s in a social setting where other kids are loud, he just doesn’t speak at all. So, we need to work on that. Seems to also shut himself down a bit receptively, too. Maybe the answer is do more playgroup type stuff (yeah, I know, when), maybe the answer is just keep moving along the path we’re on. I try to remind myself that we’re making very good progress – he dresses himself completely now – we say go get dressed, and he picks out clothes (which frequently match) and gets dressed with no further prompting. He’s fully potty trained, no regressions there, his tummy is doing mostly better as long as he gets lots of banana’s, he does manage to make his needs known even if he’s doing it nonverbally. Overall, we’re making progress. Its just still very hard to see the kids on the track he was on before he regressed – how they’ve progressed. I imagine that it will continue to be hard. Its frankly why we haven't had a birthday party for him since he was 2. Just too hard to see the differences.

Tuesday, February 9, 2010

more good stuff...

These're such baby steps I feel silly writing about them, but they really are inchstones.

Today's verbals at Alpine were 170 in 3 hours. A new record. And the majority of them were clearly words.

Dominic's favorite reinforcer by far is the water table - big shock. So Alpine has been reserving it as a reinforcer for the program he has the hardest time with - colors. Today, his therapist forgot and brought it out for shapes. And dominic said, with a giant grin "happy, happy, happy". So cute. And, appropriate use of an adjective to describe how he felt.

Monday, February 8, 2010

wow

so I picked Dominic up from preschool this morning, and his teacher told me that today, he participated in Share time. This meant that he actually stood up in front of his class, showed them the toy du jour (a small purple bouncy ball), described it (said "purple ball") and then took questions. Mrs H said that he looked at kids w/hands up in the eye, and used their name. Color me floored. HUGE step for him.

'course, he followed it with a low compliance / low eye contact afternoon at Alpine, but still. Wow.

Thursday, February 4, 2010

Actually an uneventful Doctors appt.

We got to see Dr K without the nutrituionist today. It went MUCH faster. Only a 45min wait for the 8am appointment, and then only an hour for the appointment itself. (down from 3+ hrs)

Anyway, highlights:

Overall, Dominic's making progress. Slow and steady - and he's happy, too. Even thouygh we've seen some regressions with the chelation attempts.

We had done a blood serum heavy metal test in early December, which shows actual levels of toxic metals currently running around his bloodstream. It wasn't horrific, but he's got high levels of arsenic and lead still that are concerning (also cadmium). So I got Dr K's buyoff on doing the Bioray LiverLife and Natural Detox factor protocol. (Dominic did so well on their Cytoflora, plus, they're tinctures of natural substances, versus synthetics created in a lab). I called Bioray and got the order in. We'll start that in about a week, I'm guessing.

Dominic's blood zinc level is still pretty low. Which is concerning because Zinc is vital to rebuild his gut. So, we're upping his zinc supplementation by 25% and we're going to trial gluten free brewers yeast as a supplement. We'll be doing that this week while we wait for the Bioray stuff to arrive. We'll be watching for any sort of allergic reaction which is apparently a possibility.

We are also adding in a between meal enzyme, WobenzymPS, for the gut inflammation. We'll probably start that in between the brewers yeast and Bioray protocol.

For Bioray, we'll do Liver Life for 2 weeks - starting at 1 drop 2x per day, then we'll get Dominic's urine ph down to 6.2 with diet, (we'll be doing test strips every morning) so that we make sure his body is able to clear acids, and THEN we can start the NDF+ which we start at 1 drop per day and are allowed to increase by 1 drop every 2 weeks. Slow and easy, this stuff.

In early April, we'll redo his blood and provoked urine toxic metals tests and see where we're at. WE are to do them on the same day for comparison purposes. We also have instructions to do another stool test if his poop starts to deteriorate again (knock on wood, still looking good)

Wednesday, February 3, 2010

Banana’s and Prunes, and prep for Dr. K appt.

Yep.
Banana’s and Prunes.
The beginning of January, we added prunes and prune juice to Dominic’s daily regimen, and saw immediate, healthy, shifts in his stools. Color improved, and digestion improved. We downslid a bit when we added in the GI Revive and Bifido from the doctor (we started with the recommended dosage, and immediately he was back to explosive, liquid diarrhea, so we stopped immediately, gave it a few days, and went to 1/8th of the recommended dose. We’ve been slowly increasing it. We’re now at 3/8th of the dose). We were pretty steadily having “plops” instead of formed stools, but they were digested, until this weekend.

Over the weekend, I caught a sale on banana’s. Dominic *loves* bananas. So Monday, we realized he had a NORMAL stool. Tuesday, he had 3 normal stools. Today… another normal. Its been 3 full days since he had any form of diarrhea. This is the best his tummy has been since the H1N1 in October.

So, we’ve decided we’ll be continuing to feed him at least one banana a day, and the prune juice part of his daily cocktail is staying.

We have an appointment with Dr Kucera tomorrow morning. They actually sent us the paperwork in advance to fill out, which is nice. Hopefully it’ll mean we DON’T have a 3 hour appointment.

Here’s what I filled out for them:

Focus of today’s visit: __Followup of GI issues and OSR/ Biofilm protocols.

Problems: _See GI summary below._____________________________

Concerns regarding previous Recommendations: _OSR caused brain fog, verbal regression and new stims similar to what DMPS did last summer. Suspect he is either sulfur sensitive or unable to tolerate synthetic chelators. The Biofilm protocol made his diarrhea worse (suspect the EDTA), BUT brought us the spontaneous yes’s. ____________________________________

Were you able to complete recommendations? Yes ___ No_x__

Questions/Comments:
1. What do you recommend for a supplement to assist cognition, specifically left/right brain interaction? I’ve asked before about piracetam and aniracetam before, but I’m also wondering about ginko bilboa, and about some of the alzheimers drugs, Aricept and namenda.

2. Do you think that he still needs chelation of some sort? With the negative reactions he’s had to DMPS, OSR, and EDTA, I’m not sure what direction to go. I’ve read the Bioray protocol for detox, and would be willing to give that a shot if you think he is still carrying too many metals.

Please provide a detailed update on your child:


Describe Current Status
Bowel Movements
Applesauce texture, stinky, brown, “ploppy” 2-4x per day, tends to hold it for home instead of going at school. Got way worse when we added the Biofilm protocol, slowly getting better. We’re about back to where we were at the November appointment


Bladder Function
Going regularly, very yellow from B12. Fully potty trained minimal accidents.

Behaviors New stim from Biofilm: head twitch, went away. New Stims from OSR: growling, chewing fingers, and biting clothes, slowly going away. New stim – loving falling backwards onto the couch / pillow / bed. Really wanting to eat lots of ice cubes – is that pica?

Sleep
Issues
Weaned off of melatonin mostly. Now just used as needed, maybe 30% of nights. Night sweats are almost non existent now.

Social
Skills
He’s much more emotional now. Almost like a typical early 3 year old w/tantrums. Does some playing at school w/other kids

Speech Got YES back, using NO. Holding steady w/number of words per session at Alpine – big dip when we did OSR, but that’s come back. Less babble now and more words. Still averaging 150 attempts at verbals per session.

School
Issues
OSR caused loss of focus and compliance. That’s coming back now that he’s off of it.

Current Diet (GFCF, SCD, Yeast Free, etc) ____GFCFSF, and allergen free.

Typical Meals
• Breakfast: Either nitrate free bacon or sausage, plus avocado, plus either rice/corn chex or GF oatmeal. Or GFCF cereal bar. Sometimes fruit.
• Lunch: GFCF meatballs or chicken tender plus green vegetable plus rice/potato. Sometimes sunbutter sandwich on GFCF bread
• Dinner: _ GFCF meatballs or chicken tender plus green vegetable plus rice/potato. Sometimes sunbutter sandwich on GFCF bread
• Snacks: Fruit, raw veg, GFCF pretzels/ tings /corn chips
• Liquids/Juices/Beverages: Water, no sugar added juice cut w/water to get in his aloe juice and oils.