So, I have this moms board that I frequent, that has been one of my primary sources of online support the last couple of years. Its a diverse group, and for the most part pretty respectful of each others choices. There's a particular woman on there who I've gotten into it with several times now about our choice to see a DAN doctor for Dominic. Our most recent "discussion" was about the recent study published about the monkey experients going on in PA. That discussion led me down an interesting rathole. I posted on the autism parent board I frequent as well as a couple of my yahoo groups asking how many people got discouraged when they heard such passionate diatribes from people who honestly believe that the biomedical movement is hurting our kids. And I mean passionately, firmly grounded in blinders-on mainstream medical.
And i got a whole range of responses - the one that stuck in my head was that given the choice, its better to have false hope than false despair. With false hope, there is a light at the end of the tunnel, and there are things to try, and there are options. With false despair - there is nothing. If we had believed what Dominics first pediatrician said - that the only thing we could try was ABA therapy and we couldn't afford that so don't bother... that gluten free casien free diets and vitamin supplementation were ineffective and a waste of money - we would have been beaten down by despair.
The last time we talked with Dominic's neurologist, who is the best pediatric neuro in Colorado Springs, I specifically asked him his opinion on the biomedical movement in treating autism. His response was that he didn't have an opinion because there simply wasn't enough research. He's absolutely right - this is a paradigm shift that is in its infancy. Certainly its no older than a decade, maybe 2. Doctors aren't taught about it in med school... Many aren't ever exposed to it.
In the past 2 weeks, there've been 6 deaths around ASD diagnoses. A double Homicide, an autistic man forgotten in a hot van by caretakers, a drowning, and a murder-suicide. The drowning and the institutional neglect are unspeakably horrifying. But what is unfathomable to me the people, the parents, who have had such a high level of despair that they killed their children rather than seek treatment that is out there. That they weren't able to find hope, but instead were buried in despair.
So, yes, what we are doing for Dominic is not a clearly laid path. There are not clearly defined treatments that are sure to work. Yes, there are things out there we have tried that may or may not be safe because they're TOO NEW for there to be enough data on them. Yeah, thats kind of scary, but the option to wait quietly for studies to be done and do nothing is not acceptable. So we try very hard to research everything suggested before we try it. And we do due diligence in comparing notes with other parents doing the same thing. And we question EVERYTHING. And we become advocates. And we learn far more than we ever wanted to know about things very far outside the realm of our comfort zone. Because we trust no one with letters behind their name anymore.
So when we find a product intriguing, we proceed to have a 5 day email conversation with their customer service until they send us the copy of the lab results of the mineral levels in their product and a weeks worth of samples. And have a parallel conversation with our nutritionist, who engages a whole slew of other people, before we decide that we will give it a trial after we finish the current open bottle we have of multivitamin. If this works, we'll be replacing the NDF+, multi, vit C, zinc, and lithium.
So, its a good thing to have hope. Even if it should turn out to be false hope, its not despair.
Saturday, July 31, 2010
imaginative play or compulsive organizing?
This has been a common them the last few weeks - dump all the cars out of the backpack, arrange in a circle, and put one of them in the middle. No idea what he's acting out or mirroring, but i'm torn as to if its imaginative or compulsive....
Friday, July 23, 2010
July Parent meeting...
Today was our regular monthly parent meeting at Alpine. Mostly seeing same stuff - continuing to improve, struggling cognitively, some stimming.... She showed us a digital copy of his picture that was taken a few weeks ago and its stunning. We'll get our copy of it at the dinner Aug 30. She said he was a turkey at the picture place, but she was able to get them a good shot opportunity.
the one notable thing we talked about is something that may be the root of Dominic's issues in using more than one syllable at a time. They are thinking possibly auditory processing disorder. Here's the example she gave us.
Dominic wanted to look out the window, so his therapist asked him to say Window. He said OwWinD. So the syllables came out, but completely garbled. Apparently this is something they're noticing, and i remember them mentioning it a few months ago. Maybe this is some sort of auditory dyslexia? Who knows. At any rate, the last time it was mentioned Dr K had us double the GABA dose, because that helps with sensory integration. GABA is one of the supplements we had backed way off on, so as of today,we're going right back up to the dose we were on in May. We'll see what that does and it will be a question that I bring up next time in OT and next time we see Dr K.
the one notable thing we talked about is something that may be the root of Dominic's issues in using more than one syllable at a time. They are thinking possibly auditory processing disorder. Here's the example she gave us.
Dominic wanted to look out the window, so his therapist asked him to say Window. He said OwWinD. So the syllables came out, but completely garbled. Apparently this is something they're noticing, and i remember them mentioning it a few months ago. Maybe this is some sort of auditory dyslexia? Who knows. At any rate, the last time it was mentioned Dr K had us double the GABA dose, because that helps with sensory integration. GABA is one of the supplements we had backed way off on, so as of today,we're going right back up to the dose we were on in May. We'll see what that does and it will be a question that I bring up next time in OT and next time we see Dr K.
Thursday, July 22, 2010
speech and occupational therapy yearly eval results
I have the report back from the ST and OT eval's we had done the beginning of this month.
Both therapists used standardized testing to evaluate Dominic. It completely removes the subjective from the equation.
For OT -
This year was the first time (his 3rd eval by this therapist) that he was able to sit and actually complete any cognitive testing. And technically, he'd aged out of the test she did, but she wanted to see what it showed. The age equivalent that Dominic tests out on with the Bayley scale of infant development is 25 months. Since this is the first time they've been able to even attempt this test, there's nothing to compare to.
Then she redid botht he Peabody Developmental Motor Scale and the Pediatric Evaluation of disability inventory.
For the Peabody -
Grasping - in 2009 he was at 28 months, and in 2010 he was at 43 months
Visual-Motor Integration - in 2009 he was at 27 months, and in 2010 he was at 37months
Fine motor Quotient- in 2009 he was less than the first percentile, and in 2010 he was up to the 3rd percentile, but neither of those has an age equivalent.
He went from Very Poor, Poor, and Very Poor in 2009 to Below average, poor and poor in 2010.
For the Pediatric Evaluation of Disability Inventory,
Self care functional skills went from 70 to 79
Mobility functional skills went from 85 to 94'
Social Function skills went from 47 to 56
There is a note in the written part of this that states "although overall scoring is not indicating this, Dominic continues to have higher skills that what testing indicates". So thats the drawback to the standardized testing, i guess.
From the Speech Eval -
Dominic was tested with the Preschool language scale, 4th edition.
Auditory comprehension - in 2009 was at 1 year 6 months, and is now at 1 year 11 months
Expressive communication - in 2009 was at 1 year 8 months and is now at 1 year 11 months
And he was tested with the Goldman Fristoe Test of Articulation, 2nd edition which ranked him at 2 years 0 months.
All speech sections are marked as being severe delay.
Both evaluation reports remarked on Dominic being a happy kid, which is tremendously important given all the therapy we're throwing at him.
Its really frustrating to have spent so many hours (and so much money) and to know how HARD Dominic has worked in the last year, to see only a few months improvement in standardized speech testing. Yes part of it could be that he had not worked with this ST in a full year. Yes, part of it could be that this was out of routine. Still, very frustrating.
Both therapists used standardized testing to evaluate Dominic. It completely removes the subjective from the equation.
For OT -
This year was the first time (his 3rd eval by this therapist) that he was able to sit and actually complete any cognitive testing. And technically, he'd aged out of the test she did, but she wanted to see what it showed. The age equivalent that Dominic tests out on with the Bayley scale of infant development is 25 months. Since this is the first time they've been able to even attempt this test, there's nothing to compare to.
Then she redid botht he Peabody Developmental Motor Scale and the Pediatric Evaluation of disability inventory.
For the Peabody -
Grasping - in 2009 he was at 28 months, and in 2010 he was at 43 months
Visual-Motor Integration - in 2009 he was at 27 months, and in 2010 he was at 37months
Fine motor Quotient- in 2009 he was less than the first percentile, and in 2010 he was up to the 3rd percentile, but neither of those has an age equivalent.
He went from Very Poor, Poor, and Very Poor in 2009 to Below average, poor and poor in 2010.
For the Pediatric Evaluation of Disability Inventory,
Self care functional skills went from 70 to 79
Mobility functional skills went from 85 to 94'
Social Function skills went from 47 to 56
There is a note in the written part of this that states "although overall scoring is not indicating this, Dominic continues to have higher skills that what testing indicates". So thats the drawback to the standardized testing, i guess.
From the Speech Eval -
Dominic was tested with the Preschool language scale, 4th edition.
Auditory comprehension - in 2009 was at 1 year 6 months, and is now at 1 year 11 months
Expressive communication - in 2009 was at 1 year 8 months and is now at 1 year 11 months
And he was tested with the Goldman Fristoe Test of Articulation, 2nd edition which ranked him at 2 years 0 months.
All speech sections are marked as being severe delay.
Both evaluation reports remarked on Dominic being a happy kid, which is tremendously important given all the therapy we're throwing at him.
Its really frustrating to have spent so many hours (and so much money) and to know how HARD Dominic has worked in the last year, to see only a few months improvement in standardized speech testing. Yes part of it could be that he had not worked with this ST in a full year. Yes, part of it could be that this was out of routine. Still, very frustrating.
Sunday, July 18, 2010
halfway through our HBOT break...
And things are still smooth.
Dominic's gut is still behaving.... we thought it was regressing last week with a day of diarrhea but that turned out to just be one day and I believe it was an immune response to a crud I had. So... he's now had normal poop longer than any other time in the last year. Today it looked a little yeastie, Rod said, so we'll see what tomorrow looks like. Today was 9 days since the last HBOT session and we have 9 more days to go before our next one.
We're seeing a lot more independent appropriate play - expecially with his cars. Right this second, he's got his MAC the truck outside and is driving it along the deck railing. Speech has probably dipped a bit, but he's still doing so well compared to where we were in April / May, that i'm not too concerned.
Colors it seems like he's finally turned a corner on. At least with red, blue, yellow, green, purple, and orange. He - for us at least - is now generalizing those colors pretty much whenever asked. Pink and Brown are still a problem. NExt large hurdle - shapes.
Dominic's got 2 more weeks of full days at Alpine and then back to half days in August.
Dominic's gut is still behaving.... we thought it was regressing last week with a day of diarrhea but that turned out to just be one day and I believe it was an immune response to a crud I had. So... he's now had normal poop longer than any other time in the last year. Today it looked a little yeastie, Rod said, so we'll see what tomorrow looks like. Today was 9 days since the last HBOT session and we have 9 more days to go before our next one.
We're seeing a lot more independent appropriate play - expecially with his cars. Right this second, he's got his MAC the truck outside and is driving it along the deck railing. Speech has probably dipped a bit, but he's still doing so well compared to where we were in April / May, that i'm not too concerned.
Colors it seems like he's finally turned a corner on. At least with red, blue, yellow, green, purple, and orange. He - for us at least - is now generalizing those colors pretty much whenever asked. Pink and Brown are still a problem. NExt large hurdle - shapes.
Dominic's got 2 more weeks of full days at Alpine and then back to half days in August.
Tuesday, July 13, 2010
June Data....
Which we have been waiting for with bated breath. The overall report was really good too, with progress in a number of programs. But its the speech data ya'll are interested in... so here goes...
In order to keep this relative, since he's been full days all summer, I divided everything in half so that we're only representing the same amount of time as we were for the previous recorded data.
Tacting is labelling. We knew it'd gone through the roof, but this is pretty cool
Manding is requesting - not as big a jump as labelling, but percentage wise still probably 15% increase from May numbers...
And Free Operant pairing is any verbal attempt. Also a nice increase.
I am not expecting a huge increase in July, since we didn't take data the first week, and since there are 3 field trip days for which data will only be partially taken, and since 2 weeks will have no HBOT. I am hoping we stay even in July, instead of seeing a drop. So we'll see. Either way, these are exciting numbers. To put in perspective, tho, we're still dealing with a speech level of someone just under age 2. So a long way to go... but at least we're going....
In order to keep this relative, since he's been full days all summer, I divided everything in half so that we're only representing the same amount of time as we were for the previous recorded data.
Tacting is labelling. We knew it'd gone through the roof, but this is pretty cool
Manding is requesting - not as big a jump as labelling, but percentage wise still probably 15% increase from May numbers...
And Free Operant pairing is any verbal attempt. Also a nice increase.
I am not expecting a huge increase in July, since we didn't take data the first week, and since there are 3 field trip days for which data will only be partially taken, and since 2 weeks will have no HBOT. I am hoping we stay even in July, instead of seeing a drop. So we'll see. Either way, these are exciting numbers. To put in perspective, tho, we're still dealing with a speech level of someone just under age 2. So a long way to go... but at least we're going....
Sunday, July 11, 2010
Vacation week roundup
Overall, we had a nice vacation week from work for me, and Alpine for Dominic....
- The speech eval from Tuesday isn't back to us in report form yet, but I pinned down the ST and talked with her some. She said scoring wise, Dominic is right under the 2 year mark, and the only thing holding him under that mark is she didn't hear (in the first hour she'd seen him for a year...) enough 2 and 3 word phrases. I think he's probably past that line, because we're hearing them, but he does need to generalize. Overall, she was really pleased with how his labeling and vocabulary are.
- We finished our 40th (well 41st including the free one) round of HBOT and are now taking a break for a few weeks. We'll start another 40 the week of July 26th, but we're only going to do 3 a week.
- The one week break from supplements wasn't too bad for Dominic. He was moodier than usual. We started supplementation back up on Wednesday, and we did not start the GI revive back up because in the week off, he didn't have any diarrhea. So now he's on a MultiVitamin, probiotics, fish oil, MCT oil (mild antifungal), GABA (neurotransmitter support), Zinc, Lithium, Melatonin, Cytoflora, liverlife, NDF+ and TMG. The TMG is new, and is supposed to help with speech. we'll give it a shot for a few weeks and see if we see improvements. When we finish this bottle of NDF+, I think we'll take a break from it.
- We sent off blood and urine tests to Doctors Data and Genova Diagnostics. We should have results from both back for our August 11 appointment with Dr K.
- Dominic did great at playdate on Thursday - he interacted with kids, didn't run off, didn't melt down, ate a picnic, and generally did really well. I was very pleased. He also did great at a bbq last night - talked a lot, jumped in a pond (so glad we carry a spare set of clothes in the car...), petted a lot of dogs, and generally had a good time.
- We've been working really hard on making Dominic say "I Want ___" instead of just doing a one word demand. ITs coming. We're cueing the I and the Want.
- The speech eval from Tuesday isn't back to us in report form yet, but I pinned down the ST and talked with her some. She said scoring wise, Dominic is right under the 2 year mark, and the only thing holding him under that mark is she didn't hear (in the first hour she'd seen him for a year...) enough 2 and 3 word phrases. I think he's probably past that line, because we're hearing them, but he does need to generalize. Overall, she was really pleased with how his labeling and vocabulary are.
- We finished our 40th (well 41st including the free one) round of HBOT and are now taking a break for a few weeks. We'll start another 40 the week of July 26th, but we're only going to do 3 a week.
- The one week break from supplements wasn't too bad for Dominic. He was moodier than usual. We started supplementation back up on Wednesday, and we did not start the GI revive back up because in the week off, he didn't have any diarrhea. So now he's on a MultiVitamin, probiotics, fish oil, MCT oil (mild antifungal), GABA (neurotransmitter support), Zinc, Lithium, Melatonin, Cytoflora, liverlife, NDF+ and TMG. The TMG is new, and is supposed to help with speech. we'll give it a shot for a few weeks and see if we see improvements. When we finish this bottle of NDF+, I think we'll take a break from it.
- We sent off blood and urine tests to Doctors Data and Genova Diagnostics. We should have results from both back for our August 11 appointment with Dr K.
- Dominic did great at playdate on Thursday - he interacted with kids, didn't run off, didn't melt down, ate a picnic, and generally did really well. I was very pleased. He also did great at a bbq last night - talked a lot, jumped in a pond (so glad we carry a spare set of clothes in the car...), petted a lot of dogs, and generally had a good time.
- We've been working really hard on making Dominic say "I Want ___" instead of just doing a one word demand. ITs coming. We're cueing the I and the Want.
Wednesday, July 7, 2010
bringing together the puzzle pieces
Because sometimes you have to understand all the bits and pieces (ha, puzzle pieces) of how you got there to figure out how to get back. And all Kids are different. And i'm sure i'll be updating this as we find more bits and pieces that it makes sense to bring in.
GUT Stuff
Yeast Diaper rash
Treated w/Nystatin, Diflucan, GSE, then herbal antiparasitic (Black Walnut)
Leaky Gut (confirmed via Red blood cells in stool test)
Irritable Bowel Disease (confirmed via lysozome and lactoferrin levels in stool test)
Oxylates
Virginia Creeper berry poisoning – 31 months
Treated w/Activated Charcoal
Eye Poking Stim
Treated w/Hibiscus tea / went away
Viruses.
Measles titers 3x what they should be (suspect vaccine crossed blood brain barrier via leaky gut during an IBD flare, and took up residence in the brain)
Influenza – this was the trigger for the first and second documented regressions
Treated apparently active virus with viral protocol – garlic, goldenseal, skullcap and olive leaf tinctures in an olive oil base rubbed on his feet nightly for 3 months, as well as ingested 10 drops 2x per day. Since this protocol, additional virus’s have NOT caused regression.
Mold
Discovered mold on futon mattress that Dominic slept on from 18 months to 5y4mo. Mold and yeast and heavy metal toxicity are all intertwined. Removed the futon, will be requesting mold testing from the DAN doctor and asking about Cholestyramine
--
What’s worked: GFCFSF diet. Nutritional supplementation. Antifungals, Antinflammatories, Antivirals. Hibiscus tea. Probiotics. Cytoflora, Liverlife, NDF+, HBOT, ABA Therapy
What hasn’t worked: Chelation w/DMPS. Chelation w/OSR. Biofilm Protocol
Sunday, July 4, 2010
Random things that i've heard come out of Dominic's mouth the last few days...
On Friday, at HBOT - he was in the sauna, and i took his glittery ball out of his backpack to give to him and he said... kid you not "put ball backpack NOW". Mr B and I looked at each other with very raised eyebrows.
Earlier today while looking for his worms.,.. "Worms whereisit coming. " (i didn't say it was going to make sense...)
When asking for a movie earlier "Hound Fox copper" (copper is the name of the hound...)
Frequently, while standing in front of an open freezer "ass cube" (seriously. he means Ice cube. but thats not how it comes out and I want to laugh every time)
At Alpine Friday - while playing some bizarre game where an elephant snorts butterflies out its trunk for the catching, some butterflies got stuck and Dominic apparently yelled "come out"
Really cool stuff. We're on the right track people. And we are now on day 4 in a row of no supplements at all. The blood draw, tho, got moved from Tomorrow morning, to Wednesday morning (we found out late Friday), which means that we'll be sans supp's 6 full days. We are seeing more hyperactivity/stimming and moodiness, but still doing good on focus. No brain fog. no diarrhea. We're thinking his gut is finally back to a decent place. Lots of playing with his cars and motorcycles - having crashes, having races. Good stuff.
Earlier today while looking for his worms.,.. "Worms whereisit coming. " (i didn't say it was going to make sense...)
When asking for a movie earlier "Hound Fox copper" (copper is the name of the hound...)
Frequently, while standing in front of an open freezer "ass cube" (seriously. he means Ice cube. but thats not how it comes out and I want to laugh every time)
At Alpine Friday - while playing some bizarre game where an elephant snorts butterflies out its trunk for the catching, some butterflies got stuck and Dominic apparently yelled "come out"
Really cool stuff. We're on the right track people. And we are now on day 4 in a row of no supplements at all. The blood draw, tho, got moved from Tomorrow morning, to Wednesday morning (we found out late Friday), which means that we'll be sans supp's 6 full days. We are seeing more hyperactivity/stimming and moodiness, but still doing good on focus. No brain fog. no diarrhea. We're thinking his gut is finally back to a decent place. Lots of playing with his cars and motorcycles - having crashes, having races. Good stuff.
Thursday, July 1, 2010
Random updates:
- We’re still in a holding pattern – finishing up our first round of HBOT, doing full day ABA. It seems like some of Dominic’s verbals are slowing down which isn’t exactly what we were hoping would be happening around HBOT session 34, BUT, what we are being told by Alpine is that what he is saying is for the most part clear, and the reduction in attempts has been a reduction in jibberjabber.
- A good friend of mine from college came to visit on Sunday. She’s a vet and was at a conference in Ft Collins. She bought Dominic a cup with Animals on it. One of those cool cups that when you put warm liquid it in, the pictures disappear to show something else. These animals disappeared to show skeletons. So Dominic took one look at the skeletons and said “ICE CUBE”. I handed him an ice cube, and he put it in the water. So the animals stopped being skeletons. Whether he actually GOT IT, or just wanted cold water instead of warm, I have no idea.
- Today marks the first day of our supplement break (no supplements until Monday, so that his blood and urine tests on Sunday and Monday reflect what his body has, not what he ingested the day before). Should be interesting… no GABA, no Lithium....
- For the most part, Dominic adores HBOT sessions. Yesterday, however, he threw a massive temper tantrum for no apparent reason – he wouldn’t stop spitting in the sauna, so we made him get out, which made him mad. And then we would let him horse around while getting in the HBOT chamber, which made him mad. Then I made him wear the oxygen mask which made him mad. Seriously, it was a wrestling match in the chamber, and by the time I got him calm (mr B didn’t think I was going to calm him down, but I did), we had raised the temp in there so much that condensation was actually dripping from the ceiling. Today is session 34. Hopefully it will be CALM. I brought his favorite movie, Dora….
- Next week Dominic has the entire week off from Alpine, and I’m taking the week off of work. I’ve made us a schedule with something to do outside every day (found a swimming pool that’s actually not expensive, so we’ll go a couple of times, we’ll go to the spray ground a couple of times, and we’ll go to a couple of parks). Also next week, we have his annual ST evaluation and his annual OT evaluation. It’ll be interesting to see the shifts since last year’s evaluations
-The insurance finally found us a psychologist in Colorado Springs, ON the plan, who can do cognitive testing. Appointment is August 16. HOWEVER, no one is quite sure what kind of dx code they’ll have to use for billing – they can’t use his medical dx of aphasia for mental health claim, and since he doesn’t have (nor will I permit him to have) a dx of autism, they aren’t sure how to bill it. I’m wondering how precisely a psychologist bills cognitive testing for someone w/no dx at all?
- Dominic's making progress on learning colors. He's been struggling with colors now for probably 9 months. (shapes have been hard, too) What he will do, is tell you the color (if its blue, yellow, green, orange, or purple. Red is still a problem) of a gummi bear if he knows hes going to get to eat it. But he won't generalize to colors of other items. Everywhere we go, I ask him what color something is... and generally, he'll get orange, blue, green and purple right.
- I've said all along we'll be able to afford the ABA therapy, supplements, and HBOT as long as nothing breaks. I've done spreadsheets and run numbers compulsively and know that as long as we can maintain w/minimal credit card usage and putting $1K a month into the Dominic fund, we'll be able to continue w/therapy through next summer as contracted. Things are starting to break and we're using the credit card way more than we should. Makes sense, tho, we've been living on a shoestring for a year now. Since April, we've had unexpected expenses of over $2K (dental expenses, bald and flat tires, the fence drama, dominic cracking Rod's glasses, bad sectors on the hard drive causing the computer to need the computer doctor...) and now both cars are up for their 100K mileage tuneup, plus there's something wrong with the neon's driver side lock that needs a mechanic and we've got $280 out of pocket for Dominic's testing that we need to spend next week. We're walking a tightrope, and what we're hoping to avoid is pulling Rod's 401K. Jury is still out.
- Interesting article over at Age of Autism today - talking about the combination of genetic mutation, environmental toxin, and virus in Crohns disease and how many DAN doctors have used that triangle for Autism for many years. It makes sense to me.
- I did the monthly ATEC test for Dominic. His score is down to 17. For the record, here's how its changed";
7/8/09: 93 (this was w/the horrible DMPS regression)
8/26/09: 53
11/20/09: 38
1/18/10: 35
2/3/10: 29
5/1/10: 29
6/3/10: 24
7/1/10: 17
- A good friend of mine from college came to visit on Sunday. She’s a vet and was at a conference in Ft Collins. She bought Dominic a cup with Animals on it. One of those cool cups that when you put warm liquid it in, the pictures disappear to show something else. These animals disappeared to show skeletons. So Dominic took one look at the skeletons and said “ICE CUBE”. I handed him an ice cube, and he put it in the water. So the animals stopped being skeletons. Whether he actually GOT IT, or just wanted cold water instead of warm, I have no idea.
- Today marks the first day of our supplement break (no supplements until Monday, so that his blood and urine tests on Sunday and Monday reflect what his body has, not what he ingested the day before). Should be interesting… no GABA, no Lithium....
- For the most part, Dominic adores HBOT sessions. Yesterday, however, he threw a massive temper tantrum for no apparent reason – he wouldn’t stop spitting in the sauna, so we made him get out, which made him mad. And then we would let him horse around while getting in the HBOT chamber, which made him mad. Then I made him wear the oxygen mask which made him mad. Seriously, it was a wrestling match in the chamber, and by the time I got him calm (mr B didn’t think I was going to calm him down, but I did), we had raised the temp in there so much that condensation was actually dripping from the ceiling. Today is session 34. Hopefully it will be CALM. I brought his favorite movie, Dora….
- Next week Dominic has the entire week off from Alpine, and I’m taking the week off of work. I’ve made us a schedule with something to do outside every day (found a swimming pool that’s actually not expensive, so we’ll go a couple of times, we’ll go to the spray ground a couple of times, and we’ll go to a couple of parks). Also next week, we have his annual ST evaluation and his annual OT evaluation. It’ll be interesting to see the shifts since last year’s evaluations
-The insurance finally found us a psychologist in Colorado Springs, ON the plan, who can do cognitive testing. Appointment is August 16. HOWEVER, no one is quite sure what kind of dx code they’ll have to use for billing – they can’t use his medical dx of aphasia for mental health claim, and since he doesn’t have (nor will I permit him to have) a dx of autism, they aren’t sure how to bill it. I’m wondering how precisely a psychologist bills cognitive testing for someone w/no dx at all?
- Dominic's making progress on learning colors. He's been struggling with colors now for probably 9 months. (shapes have been hard, too) What he will do, is tell you the color (if its blue, yellow, green, orange, or purple. Red is still a problem) of a gummi bear if he knows hes going to get to eat it. But he won't generalize to colors of other items. Everywhere we go, I ask him what color something is... and generally, he'll get orange, blue, green and purple right.
- I've said all along we'll be able to afford the ABA therapy, supplements, and HBOT as long as nothing breaks. I've done spreadsheets and run numbers compulsively and know that as long as we can maintain w/minimal credit card usage and putting $1K a month into the Dominic fund, we'll be able to continue w/therapy through next summer as contracted. Things are starting to break and we're using the credit card way more than we should. Makes sense, tho, we've been living on a shoestring for a year now. Since April, we've had unexpected expenses of over $2K (dental expenses, bald and flat tires, the fence drama, dominic cracking Rod's glasses, bad sectors on the hard drive causing the computer to need the computer doctor...) and now both cars are up for their 100K mileage tuneup, plus there's something wrong with the neon's driver side lock that needs a mechanic and we've got $280 out of pocket for Dominic's testing that we need to spend next week. We're walking a tightrope, and what we're hoping to avoid is pulling Rod's 401K. Jury is still out.
- Interesting article over at Age of Autism today - talking about the combination of genetic mutation, environmental toxin, and virus in Crohns disease and how many DAN doctors have used that triangle for Autism for many years. It makes sense to me.
- I did the monthly ATEC test for Dominic. His score is down to 17. For the record, here's how its changed";
7/8/09: 93 (this was w/the horrible DMPS regression)
8/26/09: 53
11/20/09: 38
1/18/10: 35
2/3/10: 29
5/1/10: 29
6/3/10: 24
7/1/10: 17
Subscribe to:
Posts (Atom)