Thursday, February 24, 2011

little update

Dominic is back to feeling good again. The crud really was about a 2 week adventure with a full 7 days of a fever at some point during the day, a cough, and the culminating in day of horrible diarrhea just lats Friday. Then he was fine. Literally.

And since then he’s been a super chatty bug. This weeks numbers of free operants from Alpine:

Monday: 300

Tuesday: 448 (a record!)

Wednesday: 366

Our Average in Feb probably won’t be super high because he wasn’t as talkative when he didn’t feel good (not a surprise). But for reference, the January average was 255.

We had our monthly alpine parents meeting yesterday and Dominic’s doing great – one specific example she gave was that during peer play, he has a peer he has been playing with for months but its really been more like they were playing right beside each other, not with each other. The past week, he’s started actually playing WITH her, initiating contact (he gave her a hug the other day) and his therapists are thrilled.

Wednesday, February 16, 2011

Doctors and Dentists, oh my

Today was 2 for one day... well, not really. Our Dentist's office is directly across the hall from Dr K's office, so I managed to get adjacent appointments. 8am Dr K and 10am Dentist. We had 10 minutes between, so it was timed perfectly.

Doctor appointment summary - things are going really well overall. We went over the new allergy report (legumes are out. all of them basically), urine toxic metals (no suprises), and a new NutraEval test.

We are in tweaking mode... We've dropped copper, doubled zinc, and added a ton more B Vitamins. changed type of digestive enzyme, changed vit. e brands. nothing earth shattering.

We have to do a neurotransmitter test (ha, collect saliva. GREAT. just what i want to do with a kid who has a spitting stim that we've worked really hard to get under control. fantastic!) and one more immune test that they are having Neuroscience drop ship us. We'll go back the end of March for a followup on these tests.

Had Dr K listen to Dominic's chest because to me the cough sounds wet. Chest is still clear. Keep on w/viral protocol - fluids, rest, mucinex.

Then we dropped $163 on a few supplements we were low on and went across the hall to the dentist.

A bit of background, Dominic's first dental exam, 2 years ago, he was terrified. I held him, laid back with him laying on me, and kept him from kicking the dentist while the dentist got a 2 second look in his mouth. Second visit, the dentist actually got a finger or two in to get a better look - i still had to hold him. Third visit, we found cavities and set up the surgery he had a little over a year ago for full sedation to get them all filled. Still had him on one of our laps, holding hands and feet out of the way. In the summer last year, he sat on Rod's lap and actually let the dentist put the mirror in his mouth with no drama, no tears. Everyone was thrilled.

Until this visit.

He climbed up on the dental chair by himself... so we let him. he laid down and got all enthralled in the movie this office had playing in the tv directly in front of his face (yes, that puts it on the ceiling. They're *pediatric* dentists). He then proceeded to let our dentist use the mirror, only moving his hands out of the way when they blocked his view of the movie.

THEN...

He let the hygenist polish his teeth and floss him.

we were BLOWN away. So was the Dentist, he kept coming by to comment on how well it was going.

Monday, February 14, 2011

Aquarium!

We had a good time on Sunday, at the aquarium, even tho both Dominic and I are still fighting a viral crud.

Here's a view from our dinner table in the aquarium restaurant. Why yes, that is a shark.




Dominic spent the majority of the meal like this:



The rest of the pictures are from our tour of the exhibit:

Sharks under us:


Sharks above us:




Snakes!!!



"Finding Nemo" Themed display, with anemones, clown fish and a blue tang fish



Looking up at the Macaw




DUCK!





Saturday, February 12, 2011

Dr K Appointment Prep Work... this time with Data!

Focus of today’s visit: ___Followup on NutraEval, Urine Toxic Metals, and Allergy test;,results from Neuroprotek____________

Problems: __Yeast flare week 1 of Feb corresponding to when we discontinued HBOT, under control (manifested w/uncontrollable giggling, increased behaviors at Alpine and yeastie looking poop). Virus w/fever starting 2-8, developed cough. Still managing (2-13) .

Concerns regarding previous Recommendations: __n/a______________

Were you able to complete recommendations? Yes _x_ No___

Questions/Comments: __________________________________________________________

I’m seeing multiple people online talking about Ketotifen and NeuroProtek working synergistically and enhancing each others activity. What are your thoughts on adding Ketotifen? (I think it’s a prescription) Both work on excessive TNF alpha protein, which is really interesting. (apparently curcumin works on both TNF Alpha and NF Kappa B and curcumin has been another one of our wows).

Now that Dominic is swallowing pills, is it possible to get the Glutathione shifted to capsules/gelcaps? (instead of cream / liquid). Also, is it possible to switch to a multivitamin that is a capsule?

He’s talking a lot more, but we’re seeing his speech coming in very Apraxic and I’m wondering if there’re any supplements that help specifically with Apraxia?

For Example
bubbles is bushay
blanket is bankelay
window is owindah
please is peasilly
balloon is boolaah

Please provide a detailed update on your child:



Bowel
Movements - stable, 1-2 poops a day, normal colored, formed, and digested. Occastionally he gets constipated, we managed by adding prunes to breakfast. .

Bladder
Function Seems normal.

Behaviors Improved, see below chart.The self choking behavior started to decrease immediately when we removed Chelex. It was completely gone within a few weeks. Upon addition of NeuroProtek in December, we noticed further decline in non compliance and other behavioral issues. At Alpine, he’s now down to just a few behaviors a day (flare beginning of Feb corresponds to yeast flare). At D11, we “encouraged” them to switch Para’s with him as he had managed to completely manipulate the first one of the year and was no longer at all compliant. He now has a much better trained para and is doing fantastic with her.


Sleep
Issues Goes to bed at 7pm w/1mg melatonin, sleeps until 6am, up @10pm for bathroom

Social
Skills We’ve reintroduced playing at the gym’s daycare, and overall he’s doing very well. Seems to be steady w/ peer play targets at Alpine

Speech Pls see below chart

School
Issues Am kindergarten at D11, pm ABA therapy at Alpine

Additional issues:

Dilated Eyes - We realized in the beginning of December that Dominic’s pupils are dilating randomly without light level changes. It doesn’t happen at any specific time (it happens before and after sup’s, and both in morning and evening) And while we only noticed it in the beginning of December, we couldn’t swear that it wasn’t there prior. There doesn’t seem to be any behavioral component to this (eg, no weird staring spells that would make me think absence seizure, which was one of the possibilities mentioned online). Mentioned it at the Jan Dr Grabert appt and he was unconcerned.


Allergies: Jan 28 we realized that Dominic’s eyes were racooning – red/dark circles and swelling. Believe it may’ve been an allergic reaction to food, added Quercitin when it didn’t go away Jan 29. Slowly seeing the swelling reduce. Believe that we’ve now correlated this to some of his lesser food allergies (he had sugar snap peas as a snack for a couple of days), so I’ve pulled all his lesser food allergens out (eggs, legumes) entirely to clear him up.

Skin - In mid December, corresponding with the temperature drop, he developed a flat, red, dry rash with irregular boundaries on his face around his mouth. It responds to heavy moisturizer (the one that works best has been Vit A&D ointment frequently used for diaper rash).

Current Diet (GFCF, SCD, Yeast Free, etc) _GFCFSF and specific allergen free

Typical Meals

· Breakfast: ____GF oatmeal, nitrate free sausage________________

· Lunch: ______chicken breast, raw or frozen veggies, rice/pasta/gf pretzels, fresh fruit

· Dinner: ___ chicken breast, raw or frozen veggies, rice/pasta/gf pretzels, fresh fruit __

· Snacks: fresh fruit, GFCF pretzels_______________________

· Liquids/Juices/Beverages: ____water, diluted apple juice______________________

Charts

Mands are requests, Tacts are Labels, and FOP’s are free operant pairs or verbal attempts.






Friday, February 11, 2011

Happy Birthday Dominic!

Today Dominic is 6. Blows my mind. He’s been sick this week, so we’re kind of glad we didn’t plan a party. Last week he was really yeastie so we added in antifungals and this week’s he’s been fevery and coughing. (And par for the course, so have I). no signs of regression w/this crud, tho. Which is nice. But those circles under his eyes? Those showed up when he started feeling puny.

Dominic’s favorite birthday present appears to be the Monkey hat I had a friend crochet for him. He wore it to school today… imagine that….



Instead of a big party this year, we are taking Dominic up to the Denver Aquarium and restaurant (yes, there’s a seafood restaurant in there… ) on Sunday. The weather is supposed to be gorgeous! We will take the camera and try to get some good bloggable pictures

Thursday, February 3, 2011

been there, done that....

So, I spend a lot of time hanging out on message boards online. I’ve got one specifically for ASD parents who do Biomed… another for local moms, and another that’s a moms group but not local…

One of my friends from that group (who is actually probably reading this – hi A) has a recently diagnosed ASD little boy (2-3ish). She’s been doing all the grieving associated with the diagnosis, and learning ABA, and being overwhelmed, and learning… etc. The other day her little boy caught a virus… and she posted asking other ASD moms if it was normal to regress after a virus.

Hello DejaVu. Its like Dominic all over again. I told her, (on the phone), no one who hasn’t watched their child slip away from them gets it. I get it. I’ve Been There, Done That. And nothing is quite as traumatic, or leaves you feeling quite as helpless.

BUT

There’re things you can do, and I went into all the stuff we’ve done for Dominic over the last couple of years (has it really been 3 years since the original regression? It feels like a decade).

I hadn’t realized I’d crossed the line between being the one looking for guidance and the one giving it until today.