And, here's a movie:
Friday, August 28, 2009
Zoo trip w/Daddy this morning
Friday school doesn't start until next week, So Rod took Dominic to the zoo.
And, here's a movie:
And, here's a movie:
Thursday, August 27, 2009
The scoop on the, well, Poop. (test that is)
So, most of you remember that after 5 doses of the DMPS chelation dose in July we cried "Uncle" and stopped. Dr K ordered a stool sample to try to figure out what was going on, and we sent it off.
Today, we got our copy of the results. And when compared to the stool sample done last Feb, they are FASCINATING. In not a good way.
I guess positive differences first: Dominic has only one flora out of balance now compared to 5 that were out of balance in Feb. Go probiotics! But he's still low (as in had ZERO) one one of the varieties of beneficial flora, which is just weird because he's on an adult dose of 2 different probiotics. There were no red blood cells this time, compared to some last time. Total short chain fatty acids are now in the normal range, whereas they were under normal last time.
And now for the negative changes
Unsuprisingly, yeast was "many" this time verses "rare" last time. (and, i didn't take him off the antifungal for the test - he stayed on GSE and MCT liquid)
Suprisingly for me, inflammatory markers Lysozyme and Lactoferrin which had been in the normal range last time were elevated this time. (the former should be under 600ng/ml and his was 1070, the latter should be under 7.3 ug/ml and his was 33.9. So to my untrained eye, those look distinctly elevated) Lysozyme is an enzyme secreted at the site of inflammation in the GI tract and elevated levels have been identified in IBD patients. Lactoferrin is a quantitative GI specific marker of inflammation used to diagnose and differentiate IBD from IBS and to monitor patient inflammation levels during active and remission phases of IBD.
We do not see the doc for about another month. But this sure explains why his behaviors went so far out of whack - he had a gut ache and was drunk from yeast.
I don't know yet what this will mean in the grand scheme of things. I'm not going to be terribly suprised to be encouraged to go on the Specific Carb. Diet, and have in fact already bought and read the book. But i'm not looking forward to that - he's already so restricted, taking away everything else would really be difficult for all parties involved. However, we've talked about it and if push comes to shove we'd rather do diet than yet more supplements.
Today, we got our copy of the results. And when compared to the stool sample done last Feb, they are FASCINATING. In not a good way.
I guess positive differences first: Dominic has only one flora out of balance now compared to 5 that were out of balance in Feb. Go probiotics! But he's still low (as in had ZERO) one one of the varieties of beneficial flora, which is just weird because he's on an adult dose of 2 different probiotics. There were no red blood cells this time, compared to some last time. Total short chain fatty acids are now in the normal range, whereas they were under normal last time.
And now for the negative changes
Unsuprisingly, yeast was "many" this time verses "rare" last time. (and, i didn't take him off the antifungal for the test - he stayed on GSE and MCT liquid)
Suprisingly for me, inflammatory markers Lysozyme and Lactoferrin which had been in the normal range last time were elevated this time. (the former should be under 600ng/ml and his was 1070, the latter should be under 7.3 ug/ml and his was 33.9. So to my untrained eye, those look distinctly elevated) Lysozyme is an enzyme secreted at the site of inflammation in the GI tract and elevated levels have been identified in IBD patients. Lactoferrin is a quantitative GI specific marker of inflammation used to diagnose and differentiate IBD from IBS and to monitor patient inflammation levels during active and remission phases of IBD.
We do not see the doc for about another month. But this sure explains why his behaviors went so far out of whack - he had a gut ache and was drunk from yeast.
I don't know yet what this will mean in the grand scheme of things. I'm not going to be terribly suprised to be encouraged to go on the Specific Carb. Diet, and have in fact already bought and read the book. But i'm not looking forward to that - he's already so restricted, taking away everything else would really be difficult for all parties involved. However, we've talked about it and if push comes to shove we'd rather do diet than yet more supplements.
Wednesday, August 26, 2009
alpine picture....
Here's the picture we mentioned a few days ago that was a centerpiece at the Alpine fundraiser dinner. :)
Tuesday, August 25, 2009
Alpine Aug Parents meeting / and Preschool update
We had our August parent meeting over at Alpine this afternoon and things are going really well.
Dominic continues to show good compliance, which indicates his receptive listening has improved greatly from the beginning of the summer. He’s following an instruction more immediately instead of gazing off into nowhere. He’s doing great with his new body part program and has generalized very well the things that he’s doing for us at home.
Some of the good signs we’ve seen at home that we mentioned today in our meeting (and were reassured that they were in fact excellent signs)
– Dominic is now labeling pictures of himself as “me” instead of “Dominic” when asked who they are.
– Once, last week, Dominic actually answered a yes/no question with a very quiet “yes”. (we about fell out of our chairs. This is a HUGE goal. It hasn’t happened since, but once is where it has to start)
– Yesterday, I was working on my never ending weeding project outside, and I asked Dominic to go inside and bring me my water. He went inside, went upstairs, got my water off the counter, and brought it to me. This is HUGE, because look at all the opportunities for distraction along the way.
– When Rod told Amber that Dominic was methodically digging in the sandbox at pickup from preschool this morning, and gently letting the sand go, she was very pleased – apparently they’ve been working on good digging at Alpine (instead of wildly flinging the sand around) – because it means he’s generalizing the skills he’s learning at Alpine over to preschool.
Dominic had another great day at pre-school this morning as well. Today was his first meeting with the new school Speech therapist, who he will work with twice a week. They’re getting to know each other, and apparently he did well. So far, the D11 staff seems surprised and impressed with how well Dominic is doing – yesterday the teachers words were that he had an incredible first day, he’s doing great with compliance, he’s participating… amazing what 2 ½ months of ABA therapy will do for you…
We talked Long Term plan at Alpine today, as well, and right now we’re committed half days through May, and then full days for next summer. Then depending on how he’s doing, and if kindergarten is half or full day, would depend on if he went back to half days in the fall. Right now, we’re operating under the assumption that insurance isn’t going to pay (they might, we’ll know by Mid Sept what the decision is for the June invoice), and are continuing to work on creative fundraising ideas. (anyone with suggestions can feel free to leave a comment… we’re seriously open to anything)
The biggest hurdle for him is language. He can fake it really well but he simply doesn’t have the ability to communicate verbally or nonvebally and that’s what we’ve got to build. Its coming, and we expect that being in a classroom of neurotypical, verbal children will only help matters.
Oh, and we’ve decided looking at the last couple of weeks of data (on my spreadsheet) that we’re going to add the Enhansa back into his routine. He’s been much less focus’d and had higher behaviors off of it. So we’ll see what that does this second time around. He’s been off it entirely for 2 weeks, and we’d reduced the dosage over a weeks time.
Dominic continues to show good compliance, which indicates his receptive listening has improved greatly from the beginning of the summer. He’s following an instruction more immediately instead of gazing off into nowhere. He’s doing great with his new body part program and has generalized very well the things that he’s doing for us at home.
Some of the good signs we’ve seen at home that we mentioned today in our meeting (and were reassured that they were in fact excellent signs)
– Dominic is now labeling pictures of himself as “me” instead of “Dominic” when asked who they are.
– Once, last week, Dominic actually answered a yes/no question with a very quiet “yes”. (we about fell out of our chairs. This is a HUGE goal. It hasn’t happened since, but once is where it has to start)
– Yesterday, I was working on my never ending weeding project outside, and I asked Dominic to go inside and bring me my water. He went inside, went upstairs, got my water off the counter, and brought it to me. This is HUGE, because look at all the opportunities for distraction along the way.
– When Rod told Amber that Dominic was methodically digging in the sandbox at pickup from preschool this morning, and gently letting the sand go, she was very pleased – apparently they’ve been working on good digging at Alpine (instead of wildly flinging the sand around) – because it means he’s generalizing the skills he’s learning at Alpine over to preschool.
Dominic had another great day at pre-school this morning as well. Today was his first meeting with the new school Speech therapist, who he will work with twice a week. They’re getting to know each other, and apparently he did well. So far, the D11 staff seems surprised and impressed with how well Dominic is doing – yesterday the teachers words were that he had an incredible first day, he’s doing great with compliance, he’s participating… amazing what 2 ½ months of ABA therapy will do for you…
We talked Long Term plan at Alpine today, as well, and right now we’re committed half days through May, and then full days for next summer. Then depending on how he’s doing, and if kindergarten is half or full day, would depend on if he went back to half days in the fall. Right now, we’re operating under the assumption that insurance isn’t going to pay (they might, we’ll know by Mid Sept what the decision is for the June invoice), and are continuing to work on creative fundraising ideas. (anyone with suggestions can feel free to leave a comment… we’re seriously open to anything)
The biggest hurdle for him is language. He can fake it really well but he simply doesn’t have the ability to communicate verbally or nonvebally and that’s what we’ve got to build. Its coming, and we expect that being in a classroom of neurotypical, verbal children will only help matters.
Oh, and we’ve decided looking at the last couple of weeks of data (on my spreadsheet) that we’re going to add the Enhansa back into his routine. He’s been much less focus’d and had higher behaviors off of it. So we’ll see what that does this second time around. He’s been off it entirely for 2 weeks, and we’d reduced the dosage over a weeks time.
Monday, August 24, 2009
First day of preschool photos
Leaving for school, slightly alarmed by the change in routine
at the school. Definately concerned about this.
Saying byebye to mommy.
Note the eye contact in all the photos. Granted, this was only 3 of about 20 we took, and these are the best three, but still, excellent eye contact.
Sunday, August 23, 2009
Another good read...
Over at Age of Autism today talking about the things that we sacrifice as parents to get our kids the help they need even in a society where people may disagree about that help.....
for us, it hasn't come down to losing the house, and hopefully it won't. But its still a sobering reality, if health care isn't reformed so that insurance companies - on a FEDERAL level, parents of now 1 in 100 children could be facing bankruptcy just to get their kid the basic therapy they need to function. Or choosing not to and we'll have a wave of non functioning adults hitting the systems in about... 12-15 years. Its a huge societal issue.
for us, it hasn't come down to losing the house, and hopefully it won't. But its still a sobering reality, if health care isn't reformed so that insurance companies - on a FEDERAL level, parents of now 1 in 100 children could be facing bankruptcy just to get their kid the basic therapy they need to function. Or choosing not to and we'll have a wave of non functioning adults hitting the systems in about... 12-15 years. Its a huge societal issue.
Thursday, August 20, 2009
Dominic's new preschool teacher
We had our meeting with Dominic's new preschool teacher this afternoon. She'd been in his very first IEP almost 2 years ago, and remembered him. Short version is, He's going to do just fine. She's excited to work with him, and perfectly willing to communicate with Alpine (via a notebook system, and possibly an observational visit).
Dominic did excellent behavior wise while Rod and I filled out the paperwork, and got to know the teacher. He played well with the toys in the classroom, explored EVERY nook. Did a little drawing, strummed on a guitar, smiled for a picture... was very compliant when asked to do something, and did minimal stimming. His current new stim is growling instead of speaking. Its not nearly as gross as the spit thing was.
We emphasized that we felt it is tremendously important for Dominic to get to make some friends, the social skills are a huge thing we want help with from D11. And she's very willing to assist with that. We're on the same page on rewarding good behaviors (verses bad), and I really think he's going to have a good experience.
Dominic did excellent behavior wise while Rod and I filled out the paperwork, and got to know the teacher. He played well with the toys in the classroom, explored EVERY nook. Did a little drawing, strummed on a guitar, smiled for a picture... was very compliant when asked to do something, and did minimal stimming. His current new stim is growling instead of speaking. Its not nearly as gross as the spit thing was.
We emphasized that we felt it is tremendously important for Dominic to get to make some friends, the social skills are a huge thing we want help with from D11. And she's very willing to assist with that. We're on the same page on rewarding good behaviors (verses bad), and I really think he's going to have a good experience.
Tuesday, August 18, 2009
On Warrior Parents
We had a good time last night at the Alpine Golf Fundraiser. It was a nice dinner, at the country club, with a silent auction and all sorts of fundraisers. We came out of it with a lovely photo of Dominic (I will try to get a soft copy soon), a candle he made, some t-shirts, and generally had a nice time visiting with other parents who have kids in similar situations.
We got to meet another mom who’s been part of Alpine for a long time, her boys are teenagers. Both are autistic. She’s got an edge to her that comes from years of battling with doctors, school systems, and insurance companies. Its not entirely pleasant, and its reminiscent of the other long time autism mom we’ve met. It start us wondering – does this journey into advocacy for your child lead to such jaded bitterness?
We want for Dominic the best he can possibly get – and Alpine is hands down the best facility in the state (found out last night two of the kids there are bussed down from Park County, on the school systems dime, 3 hours of driving round trip per day, because of the stellar program) and one of the best in the country – but we don’t really want to be that jaded. I’m really hoping for health insurance coverage so that we don’t have to go to mediation with the schools to pay for it. Health insurance SHOULD pay for it, this is medical therapy for a medical diagnosis. Dominic doesn’t have them – that we’ve caught on eeg (we have suspected absence seizures for a long time) – but almost every child with an autism diagnosis has seizures. Explain to me how proven treatment for a seizure disorder is the schools responsibility to pay for???? Explain to me how an auto-immune, gi related, seizure disorder is categorized as a mental illness in the DSM?
Once again, I’m SO glad we forced the diagnosis of Aphasia. Should insurance pay, its because we didn’t let them slap him in the Autism bucket. If the Health insurance reform passes, there is an amendment on it ending autism insurance discrimination federally. If it doesn’t pass, there’s the Autism Acceleration treatment act, pending as well. One way or another, somethings gotta give. The numbers are now 1 in 100 children with an autism related diagnosis.
We got to meet another mom who’s been part of Alpine for a long time, her boys are teenagers. Both are autistic. She’s got an edge to her that comes from years of battling with doctors, school systems, and insurance companies. Its not entirely pleasant, and its reminiscent of the other long time autism mom we’ve met. It start us wondering – does this journey into advocacy for your child lead to such jaded bitterness?
We want for Dominic the best he can possibly get – and Alpine is hands down the best facility in the state (found out last night two of the kids there are bussed down from Park County, on the school systems dime, 3 hours of driving round trip per day, because of the stellar program) and one of the best in the country – but we don’t really want to be that jaded. I’m really hoping for health insurance coverage so that we don’t have to go to mediation with the schools to pay for it. Health insurance SHOULD pay for it, this is medical therapy for a medical diagnosis. Dominic doesn’t have them – that we’ve caught on eeg (we have suspected absence seizures for a long time) – but almost every child with an autism diagnosis has seizures. Explain to me how proven treatment for a seizure disorder is the schools responsibility to pay for???? Explain to me how an auto-immune, gi related, seizure disorder is categorized as a mental illness in the DSM?
Once again, I’m SO glad we forced the diagnosis of Aphasia. Should insurance pay, its because we didn’t let them slap him in the Autism bucket. If the Health insurance reform passes, there is an amendment on it ending autism insurance discrimination federally. If it doesn’t pass, there’s the Autism Acceleration treatment act, pending as well. One way or another, somethings gotta give. The numbers are now 1 in 100 children with an autism related diagnosis.
On Expectations.
When we become parents, we have expectations of our offspring. We expect that they will do certain things at certain times and end up growing into certain people with certain strengths and weaknesses.
We were talking the other day about how any expectations we might’ve had for Dominic have been completely shattered. Frankly right now all we want is to raise a person who is capable of living independently as an adult. Its really hard to put this into words, but we’re living so much IN THE MOMENT right now, that its impossible to see past this week.
We have friends whose 5 year olds are riding the bus to kindergarten. That will not be Dominic. We have friends whose child with a birthday one month before Dominic’s is doing math and reading. And we’re fighting to be able to get him to be able to speak. We have friends whose three and four year olds are doing basic math. And Dominic doesn’t even have the basic concept of counting. All he can do, and this is an accomplishment of the summer, is repeat back the number one through ten when someone else says them. The underlying concepts of counting or of quantity simply aren’t there. His peers are writing their names. He’s struggling to imitate a vertical line with actual hand positioning help from a therapist.
We were talking the other day about how any expectations we might’ve had for Dominic have been completely shattered. Frankly right now all we want is to raise a person who is capable of living independently as an adult. Its really hard to put this into words, but we’re living so much IN THE MOMENT right now, that its impossible to see past this week.
We have friends whose 5 year olds are riding the bus to kindergarten. That will not be Dominic. We have friends whose child with a birthday one month before Dominic’s is doing math and reading. And we’re fighting to be able to get him to be able to speak. We have friends whose three and four year olds are doing basic math. And Dominic doesn’t even have the basic concept of counting. All he can do, and this is an accomplishment of the summer, is repeat back the number one through ten when someone else says them. The underlying concepts of counting or of quantity simply aren’t there. His peers are writing their names. He’s struggling to imitate a vertical line with actual hand positioning help from a therapist.
Sunday, August 16, 2009
This and That
- no word from insurance yet. I'll call them tomorrow and see where things are.
- We went to Red Robin today for our anniversary, took Dominic with. This is the ONLY restaurant in town that has a dedicated gluten free fryer for their french fries and was the first time in 8 months Dominic got to eat french fries. Not only did he LOVE his fries, he ate an entire grilled chicken breast and side of steamed broccoli. ALL of it.
- Tomorrow is the Alpine Autism Center Golf Classic (eg, MAJOR fundraiser) and as part of it we are going to a catered dinner at the country club (free), and there's a private auction to which Rod donated a yoga class. The interesting thing about their invitation is that it had pictures of the kiddo's who go to Alpine in it and of the 12 students, 11 are boys.
- Tuesday is our last day of ESY with Michelle. She's been great this summer, and we'll miss her (she's moving to the mountains). We will meet Dominic's D11 preschool teacher on Thursday afternoon and let him acquaint himself with the classroom a little bit while we visit. i've made a batch of Dominic safe cupcakes and some will go live in the classroom fridge.
- We went to Red Robin today for our anniversary, took Dominic with. This is the ONLY restaurant in town that has a dedicated gluten free fryer for their french fries and was the first time in 8 months Dominic got to eat french fries. Not only did he LOVE his fries, he ate an entire grilled chicken breast and side of steamed broccoli. ALL of it.
- Tomorrow is the Alpine Autism Center Golf Classic (eg, MAJOR fundraiser) and as part of it we are going to a catered dinner at the country club (free), and there's a private auction to which Rod donated a yoga class. The interesting thing about their invitation is that it had pictures of the kiddo's who go to Alpine in it and of the 12 students, 11 are boys.
- Tuesday is our last day of ESY with Michelle. She's been great this summer, and we'll miss her (she's moving to the mountains). We will meet Dominic's D11 preschool teacher on Thursday afternoon and let him acquaint himself with the classroom a little bit while we visit. i've made a batch of Dominic safe cupcakes and some will go live in the classroom fridge.
Friday, August 14, 2009
Wednesday, August 12, 2009
So far, okay week...
So far, we're having a decent week. I'm beginning to think perhaps Dominic just does temporary regressions when he's not feeling well. That doesn't make it any less nervewracking.
We've got a busy couple of weeks. This weekend we're cramming in 2hrs each day Saturday and Sunday with our summer ESY therapist so that we use our hours up before she has to turn in her hours on Monday. Then Tuesday thru Friday, Dominic will have mornings off and afternoons at Alpine. Saturday and Sunday of next week we're making a quick trip up to Breckenridge to see some family. Then Monday the 24th he starts in his new morning preschool classroom with Alpine in the afternoon. WE're hopeful that the school district will be able to provide consistency in expectations and behavior management for Dominic.
We've got a busy couple of weeks. This weekend we're cramming in 2hrs each day Saturday and Sunday with our summer ESY therapist so that we use our hours up before she has to turn in her hours on Monday. Then Tuesday thru Friday, Dominic will have mornings off and afternoons at Alpine. Saturday and Sunday of next week we're making a quick trip up to Breckenridge to see some family. Then Monday the 24th he starts in his new morning preschool classroom with Alpine in the afternoon. WE're hopeful that the school district will be able to provide consistency in expectations and behavior management for Dominic.
Saturday, August 8, 2009
a good day.
Couple of things of note today.
- Dominic did great at the pool - at 12pm every day they call a 5 minute rest for everyone to get out of then pool and even tho he'd only been in about 15 minutes at that point, he came to me without arguing and sat in the lounge chair with me. He did good waiting for the 5 minutes to be up - we got thru the alphabet (he can now say all the letters, repeating them after me), number 1-20, the major body parts while we waited.
- We did our major shopping for the month after we left the pool - Walmart, out to lunch, Costco, GNC, and Whole Foods. In that order. And he tolerated it all with minimal stimming (the hour in the pool probably helped alot). At lunch, he actually told us he had to poop, and then when i took him to the bathroom he did. (this is an accomplishment because normally he announces PEE PEE for any bathroom activity). He ate REALLY well.
- When we got home, he actually used a 2 word demand - he brought the Thomas the Train DVD to me and said Thomas... WATCH. which is excellent.
So yes, i know they seem like small things, but they're really good. Also, today, we didn't have a single melt down. And he was pretty good with following instructions.
- Dominic did great at the pool - at 12pm every day they call a 5 minute rest for everyone to get out of then pool and even tho he'd only been in about 15 minutes at that point, he came to me without arguing and sat in the lounge chair with me. He did good waiting for the 5 minutes to be up - we got thru the alphabet (he can now say all the letters, repeating them after me), number 1-20, the major body parts while we waited.
- We did our major shopping for the month after we left the pool - Walmart, out to lunch, Costco, GNC, and Whole Foods. In that order. And he tolerated it all with minimal stimming (the hour in the pool probably helped alot). At lunch, he actually told us he had to poop, and then when i took him to the bathroom he did. (this is an accomplishment because normally he announces PEE PEE for any bathroom activity). He ate REALLY well.
- When we got home, he actually used a 2 word demand - he brought the Thomas the Train DVD to me and said Thomas... WATCH. which is excellent.
So yes, i know they seem like small things, but they're really good. Also, today, we didn't have a single melt down. And he was pretty good with following instructions.
Thursday, August 6, 2009
July clincial service monthly review report....
We got the July charts and graphs report from Alpine yesterday and here are some tidbits:
- New programs added: Letters and Shapes
- New items mastered: color matching program, 2 seconds eye contact without reinforcer, some functional pretend play w/an animal,
- Working on - identifying colors receptively, functional pretend play with other toys
Dominic averaged 18 spontaneous requests per day (mands) in July. This is up from 6 per day in June.
Dominic averaged 6 1/2 spontaneous tacts (a tact is labeling or making a comment on ones environment) per day in July, where as in June he averaged 4.
The behaviors targeted for reduction are all overall down. Dominic did develop a new one in July - spit play - which seems to have roughly correlated to the chelation rounds. Alpine is still working on figuring out if its a true self stimulatory behavior, or if its an attention getting behavior and we'll tweak his behavior plan accordingly.
So overall, the data was very positive for July
- New programs added: Letters and Shapes
- New items mastered: color matching program, 2 seconds eye contact without reinforcer, some functional pretend play w/an animal,
- Working on - identifying colors receptively, functional pretend play with other toys
Dominic averaged 18 spontaneous requests per day (mands) in July. This is up from 6 per day in June.
Dominic averaged 6 1/2 spontaneous tacts (a tact is labeling or making a comment on ones environment) per day in July, where as in June he averaged 4.
The behaviors targeted for reduction are all overall down. Dominic did develop a new one in July - spit play - which seems to have roughly correlated to the chelation rounds. Alpine is still working on figuring out if its a true self stimulatory behavior, or if its an attention getting behavior and we'll tweak his behavior plan accordingly.
So overall, the data was very positive for July
Wednesday, August 5, 2009
At what point to do we use the R word?
Dominic's had a runny nose for about a week - I caught the full virus from him myself, and have been sick w/a fever and sinus crud since Thurs. But he never got more than the runny nose that we saw.
We're starting to see maybe a potential regression... the past 2 days we’ve had much less eye contact, less verbal, and fewer things that were routine just last week (specifically, he is no longer independently labeling the dog statues on the way to Alpine). The morning therapist today actually asked if we were chelating again, which we're not. So its there and its not just us noticing. This fits the same pattern of the last regression we saw back in Nov of 2008 where a couple of days into a virus, things started slipping away. This freaks me out entirely.
I’ve contacted our nutritionist since the doc’s is closed today. I’ve emailed Alpine for them to be on the watch… I don’t know what else to do. He’s already taking antivirals, and I up’d his Zinc and Vit. C when the crud appeared. Maybe we up the glutathione, I have no idea.
This might not be a regression, he might just have a headache and not feel well. He is not running a fever, nor has he this time, so that’s positive. We could be just seeing an ebb and flow… we don’t know. But at this point, how many thousands of dollars into biomedical treatment and ABA therapy – how much fighting for what he needs – how many times have we said we’re on the right track, if we have a huge setback, I just don’t know how we’re going to handle it. I keep saying you play the hand you’re dealt, but we don’t want to be dealt this hand again. We’ve played it already. I don't want to go backwards.
Update:
We’re going to change Dominic’s supplements around – I’ve been emailing w/the nutritionist. We’re going to cycle off of Enhansa, switch to a different antiviral combination and up his anti fungals. Her words were that with some kids its one step forward and then two steps back. But its overall forward moving. I really don’t like this.
We're starting to see maybe a potential regression... the past 2 days we’ve had much less eye contact, less verbal, and fewer things that were routine just last week (specifically, he is no longer independently labeling the dog statues on the way to Alpine). The morning therapist today actually asked if we were chelating again, which we're not. So its there and its not just us noticing. This fits the same pattern of the last regression we saw back in Nov of 2008 where a couple of days into a virus, things started slipping away. This freaks me out entirely.
I’ve contacted our nutritionist since the doc’s is closed today. I’ve emailed Alpine for them to be on the watch… I don’t know what else to do. He’s already taking antivirals, and I up’d his Zinc and Vit. C when the crud appeared. Maybe we up the glutathione, I have no idea.
This might not be a regression, he might just have a headache and not feel well. He is not running a fever, nor has he this time, so that’s positive. We could be just seeing an ebb and flow… we don’t know. But at this point, how many thousands of dollars into biomedical treatment and ABA therapy – how much fighting for what he needs – how many times have we said we’re on the right track, if we have a huge setback, I just don’t know how we’re going to handle it. I keep saying you play the hand you’re dealt, but we don’t want to be dealt this hand again. We’ve played it already. I don't want to go backwards.
Update:
We’re going to change Dominic’s supplements around – I’ve been emailing w/the nutritionist. We’re going to cycle off of Enhansa, switch to a different antiviral combination and up his anti fungals. Her words were that with some kids its one step forward and then two steps back. But its overall forward moving. I really don’t like this.
Saturday, August 1, 2009
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