Yesterday afternoon was our monthly parents meeting at Alpine. I really like these, its nice to be able to have a good communication forum with them, and the suggestions have been really helpful.
For example, as Dominic’s becoming more verbal, he’s also becoming more stubborn. I have no idea where he might get this from. But, if he doesn’t want to do something, now he’s plopping himself onto the floor and saying NO. So the suggestion was to lift him up from behind instead of in front, because there’s less opportunity for him to amuse himself by kicking or flinging himself back. (which could amuse him, and therefore be self-reinforcing, as well as extremely annoying to mom and dad).
We did talk some about long range plans. Dominic will have to have a new IEP with the school district by the end of Feb. in which we plan the rest of this year, AND next year. Right now, the options are to be in full day kindergarten with the school district, OR to have him in half day kindergarten then bussed to Alpine for the afternoon. We don’t know how well he’ll be doing, but will probably want to err on the conservative side, and plan for him to be back in Alpine next school year too (especially if we get insurance coverage for it). So we’ll put that in the IEP. We will have our program coordinator from Alpine with us at the IEP, too.
Dominic’s doing good with his programs – he finally mastered the color blue in random rotation – we think he was just bored with the cards, so when they switched to objects he did better. His behaviors are overall much better, with occasional days of high stimming. They’re tweaking a few things based on recommendations from the CARD people who were in last week, but overall keeping him moving as planned. They’re going to be doing things that would get him to start singing the songs they use in Circle at Alpine, because he’s not, and things to try to make him focus better.
We talked a lot about forcing him to use his language. And we are getting more on that now. For example, Friday night, he and Rod were playing, and Rod hid his car from him. Dominic went directly to the couch, looked behind it, and then looked at us and said Move. Move. Couch. Move COUCH. He figured that he’d lost the car behind the couch, because frankly, that happens a lot. We’re focusing on one word requests, and trying to add the second word. He still has lots of problems getting out more than one syllable – like the brain connections are just missing. So we’re trying to give lots of examples and opportunities.
On the Biomed Front –
His tummy seems to be evening out. His poop is getting less yeastie looking. We switched the Cytoflora dose to evening mid-week last week, and haven’t had major die off symptoms since, which means he’s sleeping through it. So that means we haven’t had to give him any activated charcoal lately – which is good because its somewhat constipating. I’ve clarified with Bioray, and we’ll go on a maintenance dose after we get a clean stool test (we’ll test the end of Oct). We’ve reduced a couple of supplements (Travacor is down to ½ capsule per day – this was the one we started last spring due to aggression. Actifolate is down to only on shot days, because it interacts with mB12 to help complete the methylation cycle. So far, no extra hyperactivity has been noted. We’ll observe for a few weeks and then we’ll move homocysteine also to just shot days (the other part of the methylation cycle). No noticeable effects from pulling Primal Defense out – but we’ll see what his various probiotic levels look like in the stool test end of Oct.
On the Insurance coverage Front –
Well, we’re cautiously optimistic – so far we’re at 70% coverage of the submitted charges. June and July we’ve received payments for from the insurance. August is in process. September will be submitted the end of this week. If we can get insurance coverage at this level thru December, then we’ll be looking very good for next year, even though we are changing carriers – we’re assuming we’ll get nothing from the new carrier and setting money aside accordingly. If we get at least some coverage next year (which we might, but I won’t see the 2010 insurance policy until next week), then everyone can breathe a huge sigh of relief and Dominic will be at Alpine as long as he needs. If we don’t then Dominic will definitely be able at Alpine through August, and probably (presuming nothing else in our lives breaks and we can continue to put aside as much as possible for the therapy) will be there through December of 2010, with 2011 being an unknown.
Wednesday, September 30, 2009
Thursday, September 24, 2009
We have a new Plan, people.
Okay, we had a good appointment with Dr. Kucera. He was just as shocked as we were at the markers for IBD, since they weren't there in Feb.. He agrees with the strategy of focusing on gut.
We also now have a medical exemption to all vaccines. Which was good timing because the school just sent home a nastygram wanted him to go get like 8 shots. Not happening. We could've done a philosophical exemption, but the medical one holds more water.
We're making some tweaks to the supplements - removing several (no more nasty tasting glutathione or primal defense probiotic), reducing several (we're going to try cutting travacor in half, and we're going to try switching to straight turmeric instead of enhansa - WAY cheaper), and changing the remaining probiotic to TherBiotic Complete.
Although he was NOT familiar with the Cytoflora we're doing, he is interested in the results. SO - here's the plan
1. Continue Cytoflora until OCt 30 (thats the 6 week period). We may reduce the dosage at that point, I'll have to ask Bioray what they suggest.
2. a. Do a stool test to see what changes his gut has had (and then we can send the pre and post stool tests to Bioray and get a free bottle....)
b. Do a urine metals challenge test to see where toxic metals and essential minerals are.
c. Do a oxidative stress test (at the same time as a pile of other bloodwork for lab corp in which we're checking a bunch of mineral levels and testosterone and we're doing immunity titers to all the vaccines, just to have on file)
3. Start a trial OSR month after all above tests are done.
4. Have a followup appt w/Dr Kucera 11-19 to discuss results of stool and metals test.
5. Do a followup oxidative stress test at the end of the OSR trial to evaulate its effectiveness, and another toxic metals urine test (the goal of the OSR is to eventually end up being an FDA approved gentle chelator that also increases glutathione, and its showing excellent results in various studies)
6. Consider the following: trial of GI Revive product
7. Consider the Biofilm Protocol. Which if ya'll remember, I asked them about in June.... Dr Kucera did say he thinks we might have inadvertantly skipped ahead to this w/the Cytoflora, but we'll see.
We also now have a medical exemption to all vaccines. Which was good timing because the school just sent home a nastygram wanted him to go get like 8 shots. Not happening. We could've done a philosophical exemption, but the medical one holds more water.
We're making some tweaks to the supplements - removing several (no more nasty tasting glutathione or primal defense probiotic), reducing several (we're going to try cutting travacor in half, and we're going to try switching to straight turmeric instead of enhansa - WAY cheaper), and changing the remaining probiotic to TherBiotic Complete.
Although he was NOT familiar with the Cytoflora we're doing, he is interested in the results. SO - here's the plan
1. Continue Cytoflora until OCt 30 (thats the 6 week period). We may reduce the dosage at that point, I'll have to ask Bioray what they suggest.
2. a. Do a stool test to see what changes his gut has had (and then we can send the pre and post stool tests to Bioray and get a free bottle....)
b. Do a urine metals challenge test to see where toxic metals and essential minerals are.
c. Do a oxidative stress test (at the same time as a pile of other bloodwork for lab corp in which we're checking a bunch of mineral levels and testosterone and we're doing immunity titers to all the vaccines, just to have on file)
3. Start a trial OSR month after all above tests are done.
4. Have a followup appt w/Dr Kucera 11-19 to discuss results of stool and metals test.
5. Do a followup oxidative stress test at the end of the OSR trial to evaulate its effectiveness, and another toxic metals urine test (the goal of the OSR is to eventually end up being an FDA approved gentle chelator that also increases glutathione, and its showing excellent results in various studies)
6. Consider the following: trial of GI Revive product
7. Consider the Biofilm Protocol. Which if ya'll remember, I asked them about in June.... Dr Kucera did say he thinks we might have inadvertantly skipped ahead to this w/the Cytoflora, but we'll see.
Wednesday, September 23, 2009
Notes for appt w/Doc tomorrow
We've about decided that we've got 2 distinct issues w/Dominic. The first is gut. He had major diaper rashes (that turned out to be horrible yeast infections that we battled with him from about 1 until he pottytrained at 2 1/2). He now has irritable bowel disease markers. We think those earlier yeast infections caused leaky gut syndrome, which caused all the weird food sensitivities, AND created a way for virus's to cross his blood brain barrier. The second issue would be the viral brain injury which caused aphasia.
So we want to focus right now on getting the gut inflammatory markers cleared up with using the Aloe juice and Cytoflora. I’d like another stool test kit to take another sample after we finish 6 weeks on the full dosage – that would put testing around the end October. If it comes back showing the same improvement levels that their test subjects did, then we will have him back to normal ranges and will go on a maintenance dose of cytoflora (I’ll call Bioray and find out what that might be). If it doesn’t, then we’ll look at something else until we get his gut clear. (FYI, Bioray will send me a free bottle of any of their products if I send them copies of the before/after testing)
After we get a stool test back showing that his inflammation level is back in normal ranges, we want to work on the brain injury piece and what we can do to help with his language. Piracetam is generating some interesting discussions amidst parents of autistic kiddos with language issues… seeing both better speech and motor skills. There’re some interesting studies from Germany showing improvement in aphasia patients who take it in combination with intense speech therapy. Any thoughts on us adding it after we get a clean stool test? I found it OTC, but would it be better coming thru College Pharm?
--------------------------------
We really don’t want to do another round of DMPS chelation. We are open to doing a challenge dose and seeing where his metals and minerals are now, but if we’re going to attempt an actual round of chelation, we want to wait until his gut inflammation level is normal, AND we’d like to use something other than DMPS since it cause such a major reaction in Dominic.
--------------------------------
I’m seeing a lot of buzz about mitochondrial issues being the great genetic predisposition – whats your take on genetic testing for Dominic. Which leads into the next question – Whats the process for getting a formal medical exemption to vaccines?
--------------------------------
We’re thinking about having Alpine administer a dose of activated charcoal for Dominic during the afternoon. In order to do that They need you to sign a med authorization form. We’re not positive on this, still playing with timing the cytoflora dose and die off and such.
On the Charcoal, it was suggested that we chase it with a dose of Magnesium Citrate to negate the constipation side effect if we use it regularly. Your thoughts?
--------------------------------
We are changing insurance companies Jan 1 to Anthem BCBS. I’ve gotten United Heathcare to pay 90% of Doctors Data, and then SOME of Great Plains and SOME of Pharmasan Labs. Almost none of US Biotek, and SOME of Great Smokies. It looks like the Great Smokies and Great Plains tests overlapped, and that’s what caused some of each to be denied. We’d like to get as many “retests” as we can done before the end of this year, as know for sure we’ll have insurance coverage.
--------------------------------
Dominic is no longer craving salt. This has been kind of a steady decline and I just really noticed it in the last 2 weeks.
Dominic is also no longer covered in bruises on his shins. I had no idea that this was related until I talked w/Tami at Bioray.
Whats up w/the sudden appearance of darker leg hair on Dominic? Is this developmentally normal?
It seems like when Dominic learns something new, verbally, he forgets something old, or it just doesn’t get used anymore. His vocabulary is definitely increasing, but its having to be pried out of him more – instead of it being spontaneous.
--------------------------------
Should we be rotating antifungals? I’m seeing people talk about yeast getting tolerant to GSE and we’ve had to go up to 10 drops 2x a day since the chelation – should we go on a rotation with something else? What about rotating through Pau D’arco or Oregon Grape? What about adding Candex and / or Cell food to make the antifungal more effective?
So we want to focus right now on getting the gut inflammatory markers cleared up with using the Aloe juice and Cytoflora. I’d like another stool test kit to take another sample after we finish 6 weeks on the full dosage – that would put testing around the end October. If it comes back showing the same improvement levels that their test subjects did, then we will have him back to normal ranges and will go on a maintenance dose of cytoflora (I’ll call Bioray and find out what that might be). If it doesn’t, then we’ll look at something else until we get his gut clear. (FYI, Bioray will send me a free bottle of any of their products if I send them copies of the before/after testing)
After we get a stool test back showing that his inflammation level is back in normal ranges, we want to work on the brain injury piece and what we can do to help with his language. Piracetam is generating some interesting discussions amidst parents of autistic kiddos with language issues… seeing both better speech and motor skills. There’re some interesting studies from Germany showing improvement in aphasia patients who take it in combination with intense speech therapy. Any thoughts on us adding it after we get a clean stool test? I found it OTC, but would it be better coming thru College Pharm?
--------------------------------
We really don’t want to do another round of DMPS chelation. We are open to doing a challenge dose and seeing where his metals and minerals are now, but if we’re going to attempt an actual round of chelation, we want to wait until his gut inflammation level is normal, AND we’d like to use something other than DMPS since it cause such a major reaction in Dominic.
--------------------------------
I’m seeing a lot of buzz about mitochondrial issues being the great genetic predisposition – whats your take on genetic testing for Dominic. Which leads into the next question – Whats the process for getting a formal medical exemption to vaccines?
--------------------------------
We’re thinking about having Alpine administer a dose of activated charcoal for Dominic during the afternoon. In order to do that They need you to sign a med authorization form. We’re not positive on this, still playing with timing the cytoflora dose and die off and such.
On the Charcoal, it was suggested that we chase it with a dose of Magnesium Citrate to negate the constipation side effect if we use it regularly. Your thoughts?
--------------------------------
We are changing insurance companies Jan 1 to Anthem BCBS. I’ve gotten United Heathcare to pay 90% of Doctors Data, and then SOME of Great Plains and SOME of Pharmasan Labs. Almost none of US Biotek, and SOME of Great Smokies. It looks like the Great Smokies and Great Plains tests overlapped, and that’s what caused some of each to be denied. We’d like to get as many “retests” as we can done before the end of this year, as know for sure we’ll have insurance coverage.
--------------------------------
Dominic is no longer craving salt. This has been kind of a steady decline and I just really noticed it in the last 2 weeks.
Dominic is also no longer covered in bruises on his shins. I had no idea that this was related until I talked w/Tami at Bioray.
Whats up w/the sudden appearance of darker leg hair on Dominic? Is this developmentally normal?
It seems like when Dominic learns something new, verbally, he forgets something old, or it just doesn’t get used anymore. His vocabulary is definitely increasing, but its having to be pried out of him more – instead of it being spontaneous.
--------------------------------
Should we be rotating antifungals? I’m seeing people talk about yeast getting tolerant to GSE and we’ve had to go up to 10 drops 2x a day since the chelation – should we go on a rotation with something else? What about rotating through Pau D’arco or Oregon Grape? What about adding Candex and / or Cell food to make the antifungal more effective?
Monday, September 21, 2009
Hm. Interesting.
So, when I picked Dominic up from Alpine, his therapist said he had an amazing day - excellent focus, said so many things she didn't manage to log them all (they write down every word that comes out of his mouth), and in general blew her away.
We think its from the charcoal dose on Saturday. Interesting aside, I found a correlation noticed online between increased bed wetting (and in general just having to pee a lot more frequently) and yeast die off. Weird how everything is related. But maybe that explains the 3 times last week he wet his bed (after not doing it for MONTHS)
Anyway, I got an interesting tip from autismweb that we're going to try starting tonight - he's going to get his daily Cytoflora dose at 10pm (when we wake him up to pee), in the hopes that he sleeps through the die off reaction. this could backfire, and he could be up partying all night. Only way to find out is to try it.
We think its from the charcoal dose on Saturday. Interesting aside, I found a correlation noticed online between increased bed wetting (and in general just having to pee a lot more frequently) and yeast die off. Weird how everything is related. But maybe that explains the 3 times last week he wet his bed (after not doing it for MONTHS)
Anyway, I got an interesting tip from autismweb that we're going to try starting tonight - he's going to get his daily Cytoflora dose at 10pm (when we wake him up to pee), in the hopes that he sleeps through the die off reaction. this could backfire, and he could be up partying all night. Only way to find out is to try it.
we tried activated charcoal...
on Saturday, mid afternoon. I was able to get him to drink water w/the charcoal mixed in. Dominic's got doing shots down - he doesn't even blink now when he has to drink something funny looking / tasting, he just shoots it.
So, his silliness and high energy definately calmed down afterwards, and hasn't picked back up since. As expected, the charcoal constipated him a little bit, so i need to figure out what to do about that.
We probably won't do it every day, only if he's super silly and high energy. We figured out when we can do it - we can take it with us and give it to him right before he goes into Alpine. Alternatively, Alpine can do it for us if we get a medication instruction form filled out by the doctor. (we'll discuss that with him on Thursday)
So, his silliness and high energy definately calmed down afterwards, and hasn't picked back up since. As expected, the charcoal constipated him a little bit, so i need to figure out what to do about that.
We probably won't do it every day, only if he's super silly and high energy. We figured out when we can do it - we can take it with us and give it to him right before he goes into Alpine. Alternatively, Alpine can do it for us if we get a medication instruction form filled out by the doctor. (we'll discuss that with him on Thursday)
Friday, September 18, 2009
We have Yeast Die Off!
When I ordered our cytoflora, I had a long discussion with Tami from Bioray on die off and potential behavior side effects we might see, AND how to handle them. Its taken 2 weeks to get Dominic up to the recommended dosage of 2 droppersful of Cytoflora 2x per day and boy do we have the giggles and high energy. Last night and this morning we started having fluffy poop. Hello Yeast Die off. This is good, because it means that what we're doing is working - we're getting it out.
So. I just ordered some activated charcoal, it'll arrive tomorrow. Tami had suggested using it 45min after the cytoflora dose to pull out the yeast that got stirred up. I'm trying to figure out where to add it to our supplementation schedule so that a. we'll be home to give it to him and b. it won't negatively affect the other supplements we're doing.
I've put an internet plea out a couple of places, so we'll see what comes back. But in the process of doing that, i wrote down our daily schedule of school, therapy, and supplementation. no wonder i'm tired.
6:30am wake up
7am Cytoflora - 2 droppersful in filtered water
7:15am breakfast sup's and breakfast
Kirkman Digestive Enzymes – 1
Klaire Multivit – ½ scoop pwdr
Enhansa – 2 scoops
GABA Powder – 1
MCT Liquid – ½ TB
Zinc Liquid – 10 drops
Pharmax Codliver oil – ½ TB
Copper – 2 Drops
Nutribiotic Grapefruit Seed Extract – 10 drops
Aloe Juice – 3TB
*Every 2 days, mB12 shot right after breakfast
7:45am leave for preschool
11am home from preschool. Lunch sup's and lunch
Klaire Labs Pro-5 Probiotic – 1
Milk Thistle – ½ Cap
Primal Defense Probiotic – ½ scoop
Baking soda – ¼ tsp
Kirkman Digestive Enzymes – 1
Essential GSH – 1 tsp
Homocysteine Supreme – 1 capsule
Oil of Oregano – 4 drops
12noon leave for Alpine for ABA therapy
3:30 pm, pick Dominic up, most days, go to the gym for him to be able to play in a safe, inside playground while I work out. Wednesday's, we go home after Alpine, then head to Occupational Therapy at 5:15pm.
5:30pm home, cytoflora 2 droppersful in filtered water (except on Wed when this is 6:15)
6pm Dinner sup's and dinner (except Wed, when its 6:30)
Kirkman Digestive Enzymes – 1
Klaire Multivit – ½ scoop pwdr
Travacor Junior- 1 cap
Actifolate – 1 tablet crushed
Enhansa – 2 scoops
Lithium – ½ capsule
GABA Powder – 1 capsule
MCT Liquid – ½ TB
Pharmax pure codliver oil – 1/2TB
Carlson Vit D3 Drops –1 drop
Nutribiotic Grapefruit Seed Extract – 10 drops
Zinc liquid – 10 drops
Aloe Juice – 3TB
7pm Bedtime routine: 3 Sprays of Melatonin, Epsom salt bath, story, bed.
So. I just ordered some activated charcoal, it'll arrive tomorrow. Tami had suggested using it 45min after the cytoflora dose to pull out the yeast that got stirred up. I'm trying to figure out where to add it to our supplementation schedule so that a. we'll be home to give it to him and b. it won't negatively affect the other supplements we're doing.
I've put an internet plea out a couple of places, so we'll see what comes back. But in the process of doing that, i wrote down our daily schedule of school, therapy, and supplementation. no wonder i'm tired.
6:30am wake up
7am Cytoflora - 2 droppersful in filtered water
7:15am breakfast sup's and breakfast
Kirkman Digestive Enzymes – 1
Klaire Multivit – ½ scoop pwdr
Enhansa – 2 scoops
GABA Powder – 1
MCT Liquid – ½ TB
Zinc Liquid – 10 drops
Pharmax Codliver oil – ½ TB
Copper – 2 Drops
Nutribiotic Grapefruit Seed Extract – 10 drops
Aloe Juice – 3TB
*Every 2 days, mB12 shot right after breakfast
7:45am leave for preschool
11am home from preschool. Lunch sup's and lunch
Klaire Labs Pro-5 Probiotic – 1
Milk Thistle – ½ Cap
Primal Defense Probiotic – ½ scoop
Baking soda – ¼ tsp
Kirkman Digestive Enzymes – 1
Essential GSH – 1 tsp
Homocysteine Supreme – 1 capsule
Oil of Oregano – 4 drops
12noon leave for Alpine for ABA therapy
3:30 pm, pick Dominic up, most days, go to the gym for him to be able to play in a safe, inside playground while I work out. Wednesday's, we go home after Alpine, then head to Occupational Therapy at 5:15pm.
5:30pm home, cytoflora 2 droppersful in filtered water (except on Wed when this is 6:15)
6pm Dinner sup's and dinner (except Wed, when its 6:30)
Kirkman Digestive Enzymes – 1
Klaire Multivit – ½ scoop pwdr
Travacor Junior- 1 cap
Actifolate – 1 tablet crushed
Enhansa – 2 scoops
Lithium – ½ capsule
GABA Powder – 1 capsule
MCT Liquid – ½ TB
Pharmax pure codliver oil – 1/2TB
Carlson Vit D3 Drops –1 drop
Nutribiotic Grapefruit Seed Extract – 10 drops
Zinc liquid – 10 drops
Aloe Juice – 3TB
7pm Bedtime routine: 3 Sprays of Melatonin, Epsom salt bath, story, bed.
Sunday, September 13, 2009
couple of Interesting things...
So Dominic had an accident during the night. He's 4 1/2 , its been a couple of months since he had one, its not a big deal. It probably had something to do with all the soup he had for dinner. We think that the accident occurred on the way to the toilet, tho, which is good progress - we don't know for certain as when Rod woke up (to the light on in Dominic's room), he was bottomless, his wet pj bottoms were spread out over his toy box, and he'd dug a fresh pair of pj's out of the dresser before getting distracted by his toys. We couldn't find any signs of wet sheets or floor.
* he tried to take care of it ALL BY HIMSELF * this is fantastic.
It would've been more fantastic if he'd gone back to sleep, but he was too overstimulated so has been awake since 4:30.
Then at lunch, we were having salmon cakes (GFCF, and I finally found a recipe that gets fish into him. YAY), mixed vegetables and as a treat white rice. We as a rule do brown or wild rice, but for a treat i'd made some white. Dominic LOVES white rice, so after he finished easily 2C of mixed veggies (including the lima beans), and a salmon cake, I gave him seconds on rice. He ate that, amother salmon cake, and then actually said "More Rice". OKAY. With the thirds, he and rod were goofing around. They were actually playing, it was great. Dominic would scoot his plate towards rod, giggling madly, and Rod would try to take a spoonful, and Dominic would yank the plate back and keep laughing. He eventually got full and actually let Rod have some rice (white rice is a favorite for Rod,too)
* he tried to take care of it ALL BY HIMSELF * this is fantastic.
It would've been more fantastic if he'd gone back to sleep, but he was too overstimulated so has been awake since 4:30.
Then at lunch, we were having salmon cakes (GFCF, and I finally found a recipe that gets fish into him. YAY), mixed vegetables and as a treat white rice. We as a rule do brown or wild rice, but for a treat i'd made some white. Dominic LOVES white rice, so after he finished easily 2C of mixed veggies (including the lima beans), and a salmon cake, I gave him seconds on rice. He ate that, amother salmon cake, and then actually said "More Rice". OKAY. With the thirds, he and rod were goofing around. They were actually playing, it was great. Dominic would scoot his plate towards rod, giggling madly, and Rod would try to take a spoonful, and Dominic would yank the plate back and keep laughing. He eventually got full and actually let Rod have some rice (white rice is a favorite for Rod,too)
Thursday, September 10, 2009
oh, right, new post. Sorry, I'm behind
I've been on vacation all week, and haven't done a lot of writing, so here's a few updates
- Dominic's doing great in morning preschool. We had a meeting of all the school peeps on Tuesday, got to meet his new ST (she seems to be a hoot) and his new in classroom REA, as well as see the teacher and various supervisory types. Just to make sure we're all on the same page and get some initial impressions from all of them. The meeting was odd, but whatever. Communication is going to flow just fine, I've set up notebooks for everyone to write in, and they all have the option of reading them.
- We got the August report from Alpine. Its okay. I'd hoped for better numbers, but given what we now know about how sore his tummy was (we did the stool test on Aug 1), I'm just happy to see progress. The sore tummy also explains the behaviors all over the place. Hopefully September numbers will be better.
- We have in hand now, the insurance reimbursement for 70% of the June invoice. So, one month down, many more to go. I had expected confirmation this week on July, but its not here, so I need to call and pester insurance. I probably won't have time to do that until Monday.
- Dominic is now using the word NO appropriately at Alpine. Bummer for him is that he's being told "nice talking, but you have to do it anyway"
- At OT the other night, He actually said, without any prompts, a 3 word sentance, which is AWESOME. It was: House. Want. Please.
- Dominic's doing great in morning preschool. We had a meeting of all the school peeps on Tuesday, got to meet his new ST (she seems to be a hoot) and his new in classroom REA, as well as see the teacher and various supervisory types. Just to make sure we're all on the same page and get some initial impressions from all of them. The meeting was odd, but whatever. Communication is going to flow just fine, I've set up notebooks for everyone to write in, and they all have the option of reading them.
- We got the August report from Alpine. Its okay. I'd hoped for better numbers, but given what we now know about how sore his tummy was (we did the stool test on Aug 1), I'm just happy to see progress. The sore tummy also explains the behaviors all over the place. Hopefully September numbers will be better.
- We have in hand now, the insurance reimbursement for 70% of the June invoice. So, one month down, many more to go. I had expected confirmation this week on July, but its not here, so I need to call and pester insurance. I probably won't have time to do that until Monday.
- Dominic is now using the word NO appropriately at Alpine. Bummer for him is that he's being told "nice talking, but you have to do it anyway"
- At OT the other night, He actually said, without any prompts, a 3 word sentance, which is AWESOME. It was: House. Want. Please.
Friday, September 4, 2009
and this...is how the dinosaurs died.
they were executed by Cranky the Crane. Hung for their own... crimes?
observation of the day....
Dominic hasn't watched a movie all week. I just realized this. A large part is that his schedule is now NUTS, but in the times when even just a month ago he wanted to fill with watching a favorite movie, he's now preferring to be running around outside with or without the dog.
This is not a bad thing. Its actually rather fascinating.
This is not a bad thing. Its actually rather fascinating.
Wednesday, September 2, 2009
Wednesday musings
There’s been a bunch of media coverage lately, and its gearing up to be a major advocacy push on 9-9 by the National Autism Association. Please consider printing and faxing some of their materials on 9-9 to the pertinent parties. Its going to take all of us to get their attention.
I was out reading assorted links today, and happened up a presentation by Dr Bryan Jepson a few years ago that I really enjoyed reading. Go read it.
Here is the concluding section, which for me sums nicely the concept of doing biomed and ABA and advocacy at the same time:
“When we treat the kids we correct their nutritional abnormalities. We treat the gut. We support their own detoxification system. We remove the toxins from their bodies. We break the inflammatory cycle. We support their immune system. We treat for viruses. We try to heal the tissues. And we teach them. I mention education because I think there's a misperception among a lot of people even within the autism community that either you seek biomedical treatment or you do ABA therapy. It's not either/or, it's both. You must remove the barriers medically, and simultaneously you have to teach the children. They have to be caught up to the stage their peers have achieved naturally. Education and medical treatment work hand in hand.
This is the new paradigm in autism: autism is an environmental illness with a genetic component. It's a complex metabolic disease, not just a developmental disability. It involves multiple body systems that are interacting with each other. Autism is treatable. That's an important message to hear for those of you who are just starting out, but I think it's equally important for those of you who've been struggling for years and years and still have a long way to go. It's a marathon, it's not a sprint. Autism is a very complicated illness. There's still a lot we don't know, but our understanding is improving. You'll hear some parents say that their children virtually recovered after a single intervention. But for most of us, myself included, it's a long process. It may take 100 interventions, it might take 10 or 15 years, and it will drain your resources and your emotions. But the important thing is to never give up. Our children are trapped in there and we have to fight to get them back out.
The other important thing is that we must continue to fight for a cure. I said at the beginning of this talk that answers won't come from the top down, but from the bottom up. Until we raise our voices loud enough to change the thinking of those in charge, we're not going to make much progress. Until we have a government that is willing to look for the cause, we're not going to have the answers. We all need to play a role. I believe that a cure is possible and I believe that autism can be prevented, but it's going to take a lot of work from all of us”
Dominic’s doing okay. Each day is a series of ups and downs. He’s definitely more irritable lately, and either that’s sore tummy or frustration on his inability to communicate, or downright fatigue from his schedule. Its hard to know because he simply can’t tell us what hurts, or if he’s tired or hungry or bored or overstimulated or what. We continue to get good reports from Alpine, and the D11 classroom, so clearly he’s saving his irritability for home, which is hard.
I was out reading assorted links today, and happened up a presentation by Dr Bryan Jepson a few years ago that I really enjoyed reading. Go read it.
Here is the concluding section, which for me sums nicely the concept of doing biomed and ABA and advocacy at the same time:
“When we treat the kids we correct their nutritional abnormalities. We treat the gut. We support their own detoxification system. We remove the toxins from their bodies. We break the inflammatory cycle. We support their immune system. We treat for viruses. We try to heal the tissues. And we teach them. I mention education because I think there's a misperception among a lot of people even within the autism community that either you seek biomedical treatment or you do ABA therapy. It's not either/or, it's both. You must remove the barriers medically, and simultaneously you have to teach the children. They have to be caught up to the stage their peers have achieved naturally. Education and medical treatment work hand in hand.
This is the new paradigm in autism: autism is an environmental illness with a genetic component. It's a complex metabolic disease, not just a developmental disability. It involves multiple body systems that are interacting with each other. Autism is treatable. That's an important message to hear for those of you who are just starting out, but I think it's equally important for those of you who've been struggling for years and years and still have a long way to go. It's a marathon, it's not a sprint. Autism is a very complicated illness. There's still a lot we don't know, but our understanding is improving. You'll hear some parents say that their children virtually recovered after a single intervention. But for most of us, myself included, it's a long process. It may take 100 interventions, it might take 10 or 15 years, and it will drain your resources and your emotions. But the important thing is to never give up. Our children are trapped in there and we have to fight to get them back out.
The other important thing is that we must continue to fight for a cure. I said at the beginning of this talk that answers won't come from the top down, but from the bottom up. Until we raise our voices loud enough to change the thinking of those in charge, we're not going to make much progress. Until we have a government that is willing to look for the cause, we're not going to have the answers. We all need to play a role. I believe that a cure is possible and I believe that autism can be prevented, but it's going to take a lot of work from all of us”
Dominic’s doing okay. Each day is a series of ups and downs. He’s definitely more irritable lately, and either that’s sore tummy or frustration on his inability to communicate, or downright fatigue from his schedule. Its hard to know because he simply can’t tell us what hurts, or if he’s tired or hungry or bored or overstimulated or what. We continue to get good reports from Alpine, and the D11 classroom, so clearly he’s saving his irritability for home, which is hard.
Subscribe to:
Posts (Atom)