Its been a busy week, sorry for the lack of posting. But well, busy.
Monday, Dominic had OT after Alpine, and they've added a new target - best way to describe it is we're trying to get him to touch his left knee with his right hand (and vice versa) and we want to end up with him doing this standing and bringing the knees up to his hand. Works right/left brain, core strength and stability. Kiddo is NOT digging this.
Tuesday, Dominic's preschool class had their stone soup lunch - basically vegetable soup and the parents come for lunch. I took him. He was very concerned about the change in routine - why was I going in with him, why was the room rearranged w/more tables, and who were all these adults. But he maintained actually pretty well. We didn't stay for the whole thing, as we had to get him over to Alpine for therapy, but overall I was pleased at how well he did outside of routine. We got to visit a bit with his teacher/aides in an informal setting which was nice.
Wednesday, nothing exciting regarding Dominic, but it took us 11 hours to smoke the turkey (this is why we do it the day before. outside temp and wind and such make a huge difference in how long it takes to smoke the bird) and I did a huge amount of prep work for Thanksgiving.
Thursday was actually quieter than expected, we only had 2 guests instead of 5 (flu), and Dominic did better than he's done at a holiday in ages - he stayed upstairs and interacted. He sat nicely in his chair (no booster seat strapping him in) and he ate really well. He really likes the sugary sweet potatoes. Alot. Very high energy, and we're still seeing the wince-inducing knee drops onto the floor but overall he did great.
Friday he and I did a little black Friday shopping (we got an amazing price on the DVD-R's that Rod loves) and went to the gym. In the afternoon Allison came down from her folks with Maya and Gavin and Dominic interacted better with them than he has since the regression. He shared, he played, he initiated play with Gavin and he actually he did manage to say hello (prompted). Allison noticed big changes even since we saw them the beginning of October. when they left, he gave everyone hugs. He and Maya are still roughly the same height.
Both yesterday and Today, he's been spending copious amounts of time outside. It helps that its GORGEOUS. And he's running alot. I just watched him mowing the lawn with the toddler lawn mower we've had since he turned 2. So he's independently appropriately playing with toys.
The biofilm protocol is going okay. The hardest part is the timing bit. Its interesting, on Nov 14 we'd given him charcoal because he was acting like he'd gotten into food he shouldn't have (super giggly, bouncing off walls). normally when we do that, the next day he has black poop. he never did have black poop. So 4 days into the biofilm protocol (Nov 23 - 9 days after the charcoal) he had black poop. Fascinating. Thats WAY too long for it to be in his system (especially when all he was having was massive diarrhea) unless it was hung up in something. Which gives credence to the concept of biofilms. All very interesting stuff. We're not seeing anything negative w/the biofim protocol, and we've been on it now a full 7 days.
Tonight he'll get to hang out with a babysitter while Rod and I go to a hockey game. Then tomorrow we really have no plans - we'll go to the gym for a workout but thats it. Next week, we get the challenge of bringing him home from Alpine, giving him the biofilm protocol, and then leaving for the gym. This is hard for me because once I'm home, I just want to be done. But the gym is good for everyone, so we're going to try really hard. From what I'm reading about the biofilm protocol is its not a forever thing, its 3-5 months and then you just watch yeast really closely.
Saturday, November 28, 2009
Friday, November 20, 2009
another tool to show progress...
The Autism Research Institute has an online "autism treatment evaulation checklist" that is kind of a cool way to get a feeling for how your child is progressing.
I did an ATEC July 8 and Dominic's score was 93
I did one August 26 and it was down to 53
And I just did a third one, and we're down to 38
For this particular scoring chart, the higher the number, the more impaired the subject. So we're making good progress.
I did an ATEC July 8 and Dominic's score was 93
I did one August 26 and it was down to 53
And I just did a third one, and we're down to 38
For this particular scoring chart, the higher the number, the more impaired the subject. So we're making good progress.
Thursday, November 19, 2009
information OVERLOAD!!!!
Wow, this has been information overload week. Let me try to get it all written down for posterity.
1. School Stuff:
We got data charts with lovely graphs in multiple colors of how Dominic is doing on all of his IEP goals. Each goal is broken down into logical steps of getting him there, and the idea is to get him to 4's for each step before the goal is met.
The scoring is:
0 - refusal or no response
1 - 100% adult support / prompts
2 - Moderate adult support / prompts
3 - Minimal adult support / prompts
4 - No adult support / prompts
we have data from probably 3 days per week on average, since school started. Charted.
so
goal #1 Use classroom tools (eg, scissors, glue)
Dominic is at 3's across the board except for gluing, which he's at a 4. Apparently he loves to glue.
goal #2 Drawing basic lines, circles and shapes (prewriting skills)
Dominic is at 2's and 3's
goal #3 Following 2 step directions in routine and 1-2 step directions out of routine
Mastered 1 step non routine the first month, he's got 3's on 2 step in routine and 2's on 2 step out of routine
goal #4: Self help skills requiring crossing midline (coat, backpack, zipping)
He's got 4's on everything except zipping which he's at 2's on.
goal #5 - Sharing knowledge using 1, 2, 3, word phrases
He's at 3's for 1 word phrases and 2's for 2 word phrases.
goal #6 - show understanding of vocabulary (toys, animals clothes, food, common objects)
He's at 3's and 4's on all steps
goal #7 - using basic vocabulary in categories
He's at 2's and 3's
goal #8 - follow routine independently
He's at 3's
goal #9 - use yes/no appropriately
He's at 3's
goal #10 - verbally and physically turn take without prompts
he's at 2.5-3
goal #11 - makes wants and needs known independently
he's at 2's and 3's.
So overall, they're seeing excellent progress since August. They also have seen the huge shift in eye contact since we started Cytoflora, which is exciting. On my to-do list is going to be calling our home school, a different elementary that he's at right now, and arranging to meet with the principal and special ed person in the month of either December or January since they'll be coming to an IEP for him in Feb. We do want to try to choice into our current school, but due to a number of reasons (mostly that the decision won't be made until summer if we fill out an app), the IEP in Feb will be with the home school. So i should meet them
2. Alpine Stuff
We got back October's Alpine report. Dominic continues to make slow and steady progress there. We are clearly seeing generalization between Alpine, outside OT, and am preschool, so thats positive.
Dominic painted a picture at Alpine that's been chosen to be Alpine's greeting card design for their end of year/holiday thank you notes. Its very colorful. And very different than anything he's ever painted before. They're finding out for me what it would cost for us to order a box of them.
i'm sure i'll have more Alpine info after 11-30, thats when our next parent/teacher meeting is.
3. Dr Kucera Followup appt. this morning.
The one that was supposed to be 20min that turned into 3 hrs. Yeah. That one.
Okay, test results in a nutshell -
Lithium, way low. Change supplement and stay on it.
Vit D - back in normal range, maintain current supplementation
Copper - a little high, and way out of balance w/Zinc. Eliminate Copper and increase zinc
Iron - on the low end of normal. Add more red meat, organic only.
Testosterone - normal
Glutathione - low - OSR starting soon
Urine Toxic Metals - way better than the July test, those that are still noticably high are lead, Thallium, and Tungsten.
OAT test - I don't have my copy of this yet, because it should come in the mail tomorrow (i made the lab Fax the doc a copy so we'd have it to discuss). There were 3 puzzlingly high yeast markers - puzzling because they're not the ones that've been high before and becauce they're not the ones that are usually seen as high. So he's got a funky yeast. Also high was oxalic acid, but the particularly puzzling yeast acid would increase oxalic. We have not seen eye poking behavior, so aren't going to consider the low oxalate diet at present.
Decisions -
We're going to start a modified Biofilm protocol tomorrow. This means a complete rearranging of the supplement schedule so that at 4pm every day, Dominic gets a special ezyme called Interfase Plus (which has EDTA in it, a chelator) that will pierce the biofilm. AT the same time, we throw the whole days worth of antifungals at him. We're rearranging his probiotics and prebiotics so that at 10pm when we wake him up to pee (and in theory his tummy is empty) we will give him the cytoflora and the Therabiotic plus. Then at breakfast, he'll get more cytoflora and the Primal defense. Starting with christmas break, on days that he doesn't have AM preschool (so weekends and holidays), we'll do the whole regime at 9am as well as 4pm.
we changed his lithium brand to one thats also got TMG in it. I wanted to try TMG months ago, but Dr Kucera had us wait.
We are starting OSR at Christmas break. We are doing a full Red BLood Cell test first, and I'm to call Dr Kucera if I think Dominics gut is still to fragile to proceed. I hope that the break works, because that would give us 2 weeks to get him going on it without the stress of school / therapy. Dr Kucera agreed with my VERY slow schedule - 1/4 of a capsule every other day for 2 weeks, then 1/2 a capsule EOD for 2 weeks, then a full capsule EOD. and we'll stay EOD.
We will do another urine toxic metals post test mid January (after about a month on OSR), and we will see Dr Kucera Feb 4.
Whew. Did I mention information overload. Its been a long week.
Also, i'm behind on posting photo's and will try to catch up soon.
1. School Stuff:
We got data charts with lovely graphs in multiple colors of how Dominic is doing on all of his IEP goals. Each goal is broken down into logical steps of getting him there, and the idea is to get him to 4's for each step before the goal is met.
The scoring is:
0 - refusal or no response
1 - 100% adult support / prompts
2 - Moderate adult support / prompts
3 - Minimal adult support / prompts
4 - No adult support / prompts
we have data from probably 3 days per week on average, since school started. Charted.
so
goal #1 Use classroom tools (eg, scissors, glue)
Dominic is at 3's across the board except for gluing, which he's at a 4. Apparently he loves to glue.
goal #2 Drawing basic lines, circles and shapes (prewriting skills)
Dominic is at 2's and 3's
goal #3 Following 2 step directions in routine and 1-2 step directions out of routine
Mastered 1 step non routine the first month, he's got 3's on 2 step in routine and 2's on 2 step out of routine
goal #4: Self help skills requiring crossing midline (coat, backpack, zipping)
He's got 4's on everything except zipping which he's at 2's on.
goal #5 - Sharing knowledge using 1, 2, 3, word phrases
He's at 3's for 1 word phrases and 2's for 2 word phrases.
goal #6 - show understanding of vocabulary (toys, animals clothes, food, common objects)
He's at 3's and 4's on all steps
goal #7 - using basic vocabulary in categories
He's at 2's and 3's
goal #8 - follow routine independently
He's at 3's
goal #9 - use yes/no appropriately
He's at 3's
goal #10 - verbally and physically turn take without prompts
he's at 2.5-3
goal #11 - makes wants and needs known independently
he's at 2's and 3's.
So overall, they're seeing excellent progress since August. They also have seen the huge shift in eye contact since we started Cytoflora, which is exciting. On my to-do list is going to be calling our home school, a different elementary that he's at right now, and arranging to meet with the principal and special ed person in the month of either December or January since they'll be coming to an IEP for him in Feb. We do want to try to choice into our current school, but due to a number of reasons (mostly that the decision won't be made until summer if we fill out an app), the IEP in Feb will be with the home school. So i should meet them
2. Alpine Stuff
We got back October's Alpine report. Dominic continues to make slow and steady progress there. We are clearly seeing generalization between Alpine, outside OT, and am preschool, so thats positive.
Dominic painted a picture at Alpine that's been chosen to be Alpine's greeting card design for their end of year/holiday thank you notes. Its very colorful. And very different than anything he's ever painted before. They're finding out for me what it would cost for us to order a box of them.
i'm sure i'll have more Alpine info after 11-30, thats when our next parent/teacher meeting is.
3. Dr Kucera Followup appt. this morning.
The one that was supposed to be 20min that turned into 3 hrs. Yeah. That one.
Okay, test results in a nutshell -
Lithium, way low. Change supplement and stay on it.
Vit D - back in normal range, maintain current supplementation
Copper - a little high, and way out of balance w/Zinc. Eliminate Copper and increase zinc
Iron - on the low end of normal. Add more red meat, organic only.
Testosterone - normal
Glutathione - low - OSR starting soon
Urine Toxic Metals - way better than the July test, those that are still noticably high are lead, Thallium, and Tungsten.
OAT test - I don't have my copy of this yet, because it should come in the mail tomorrow (i made the lab Fax the doc a copy so we'd have it to discuss). There were 3 puzzlingly high yeast markers - puzzling because they're not the ones that've been high before and becauce they're not the ones that are usually seen as high. So he's got a funky yeast. Also high was oxalic acid, but the particularly puzzling yeast acid would increase oxalic. We have not seen eye poking behavior, so aren't going to consider the low oxalate diet at present.
Decisions -
We're going to start a modified Biofilm protocol tomorrow. This means a complete rearranging of the supplement schedule so that at 4pm every day, Dominic gets a special ezyme called Interfase Plus (which has EDTA in it, a chelator) that will pierce the biofilm. AT the same time, we throw the whole days worth of antifungals at him. We're rearranging his probiotics and prebiotics so that at 10pm when we wake him up to pee (and in theory his tummy is empty) we will give him the cytoflora and the Therabiotic plus. Then at breakfast, he'll get more cytoflora and the Primal defense. Starting with christmas break, on days that he doesn't have AM preschool (so weekends and holidays), we'll do the whole regime at 9am as well as 4pm.
we changed his lithium brand to one thats also got TMG in it. I wanted to try TMG months ago, but Dr Kucera had us wait.
We are starting OSR at Christmas break. We are doing a full Red BLood Cell test first, and I'm to call Dr Kucera if I think Dominics gut is still to fragile to proceed. I hope that the break works, because that would give us 2 weeks to get him going on it without the stress of school / therapy. Dr Kucera agreed with my VERY slow schedule - 1/4 of a capsule every other day for 2 weeks, then 1/2 a capsule EOD for 2 weeks, then a full capsule EOD. and we'll stay EOD.
We will do another urine toxic metals post test mid January (after about a month on OSR), and we will see Dr Kucera Feb 4.
Whew. Did I mention information overload. Its been a long week.
Also, i'm behind on posting photo's and will try to catch up soon.
Wednesday, November 18, 2009
Quick update
will write more hopefully later
Last nights meeting w/the school went really well. They provided status updates on all of Dominic's IEP goals, and he's overall doing really well.
several specific things are generalizing well from other environments - the eye contact and scissoring specifically.
We also got October's report from Alpine, and that also shows nice steady improvement.
Last nights meeting w/the school went really well. They provided status updates on all of Dominic's IEP goals, and he's overall doing really well.
several specific things are generalizing well from other environments - the eye contact and scissoring specifically.
We also got October's report from Alpine, and that also shows nice steady improvement.
Monday, November 16, 2009
Update on the dental stuff
So, come to find out that our insurance will cover the sedation and facilities for Dominic to have his cavities filled in the OR under full anesthesia. And cover it well. At most, we'd pay the last of our out of pocket (which by that point will be like $100). I made the insurance lady give me a reference number to document she told me this too.
Anyway, Dominic's dental surgery is scheduled for Dec 18. Fun.
Anyway, Dominic's dental surgery is scheduled for Dec 18. Fun.
Notes for our appt on Thurs w/Dr Kucera
(this time he wanted me to email it to him early so he could read it over. Imagine that)
Summary of Dominic’s Spreadsheet since Sept 24.
Poop:
We had just reached the full dose of Cytoflora last appt (4
droppersful per day) and then had about 7 days of yeastie looking
poop, followed by 7 days of normal healthy looking poop, followed by 4
days of yeastie “mashed potato Poo”. October 19, he had diarrhea and
the next morning he was running a 103 degree fever - Dr Bamberger Dx’d
H1N1 based on symptoms. We did NOT give him Tamiflu, but medicated
the fever w/Motrin and pushed fluids. He had a fever Oct 20 and 21.
The diarrhea Oct 20 thru 23 was yellow liquid with undigested food in
it. October 24-30 was brown and firming up a tiny bit each day and we
had gotten back to thick applesauce texture. Nov 1, it went back to
yellow liquid and his temp went back up to 102. Nov 2 his temp went
up to 103.8 and we took him to Dr Bamberger who said still viral, no
source of infection, lungs are clear. Nov 2-6 his appetite tanked and
he had watery brown diarrhea within 20min of eating, with recognizable
food coming directly out. Nov 8 to present, he is still having
diarrhea, its gotten texturally better gradually, and today (Sunday),
we’re having very soft but formed stools. We have been supplementing
w/Pedialyte and we added Caprylex ½ cap on Nov 6 which we upped to a
full cap on Nov 9. We also added primal defense probiotic back in Nov
6 in addition to the Therabiotic.
Exciting behavior changes correlating to full dose of Cytoflora and
addition of Therabiotic (since nothing else has changed)
- Oct 7 – OT therapists noticing better attention and commented on it
- Oct 8 – Daycare at the Gym commented that he was talking
noticeably more
- Oct 10 – independently said “Love You Too” for the first
time in almost a year during bedtime routine.
- Oct 13 – huge jump in free operant pairing (verbal attempts)
at Alpine to 124 – first time ever to break 100. It stayed over 100
until the week he got sick, when it dropped down to 60-80 per day
while he felt bad
- Oct 14 – First time since starting ABA to get a 100% on the
eye contact program And most excitingly, he has had perfect eye
contact EVERY therapy day since even while he was sick
- Nov 10 – big leap to another record day at Alpine – 152 free
operant pairings, and a major cognitive leap w/block imitation (went
from doing 6 blocks, to 10)
- Just in the past week, he’s started putting his own laundry
away, helping me feed the birds in the morning, and we’ve been able to
remove the booster seat slash containment device from the dinner table
and he’s no longer eloping.
So, his tummy’s still a mess, and I really think what happened is
H1N1 shredded the delicate balance we’d managed to get to and he’s
SLOWLY getting back. I think we’ve got more yeast going on, too, based
on the amount of inappropriate giggling.
Sleep is mostly good. When he’s sick, he wakes up a couple of times a
night, but for the most part, he’s getting a solid 11 hours of sleep.
Questions etc, for 11-19 appt:
Testing followup questions:
Molybdenum – should we supplement with it when we start w/the OSR?
Can we reduce supplemental levels of Lithium, Zinc, Copper based on
the lab results?
Did he come back w/high testosterone?
What did the metals test pull – the urine sample was the grossest
thing ever – looked like pulpy orange juice in color and texture, so
definitely pulled something out.
Other Questions:
Have we ever tested Dominic’s thyroid? Hypothroidism runs in the
family, and I just saw a possibility online that low iodine in the
thyroid makes it harder to fight candida
http://candidablog4u.com/the-importance-of-iodine/
all the hoopla about XMRV makes me really want to get Dominic tested
for it. Supposedly this company has patented the test and is offering
it - http://vipdx.com/. What is your opinion?
After we get his gut cleaned back up, and see how we do on OSR, I
really still want to do something to work on his right/left brain
hemispheric communication. I asked about piracetam
(http://www.harvesthealth.com/pi800mg120ca.html) last appt, but we
didn’t really get to a discussion point. I’d really like to know
about either starting it or aniracetam
(http://www.harvesthealth.com/an750mg60caf.html). If you could please
let me know which would make more sense with the goal being more
speech and better left/right brain communication, I’d appreciate it.
I expect its still 3-4 months away – I want to do at least 6 weeks
with OSR being the only supplement added.
I am planning on holding off on the stool test I have in the closet
until he’s had at least 2 weeks of healthy looking poop. Do you agree
or should I wait longer?
Summary of Dominic’s Spreadsheet since Sept 24.
Poop:
We had just reached the full dose of Cytoflora last appt (4
droppersful per day) and then had about 7 days of yeastie looking
poop, followed by 7 days of normal healthy looking poop, followed by 4
days of yeastie “mashed potato Poo”. October 19, he had diarrhea and
the next morning he was running a 103 degree fever - Dr Bamberger Dx’d
H1N1 based on symptoms. We did NOT give him Tamiflu, but medicated
the fever w/Motrin and pushed fluids. He had a fever Oct 20 and 21.
The diarrhea Oct 20 thru 23 was yellow liquid with undigested food in
it. October 24-30 was brown and firming up a tiny bit each day and we
had gotten back to thick applesauce texture. Nov 1, it went back to
yellow liquid and his temp went back up to 102. Nov 2 his temp went
up to 103.8 and we took him to Dr Bamberger who said still viral, no
source of infection, lungs are clear. Nov 2-6 his appetite tanked and
he had watery brown diarrhea within 20min of eating, with recognizable
food coming directly out. Nov 8 to present, he is still having
diarrhea, its gotten texturally better gradually, and today (Sunday),
we’re having very soft but formed stools. We have been supplementing
w/Pedialyte and we added Caprylex ½ cap on Nov 6 which we upped to a
full cap on Nov 9. We also added primal defense probiotic back in Nov
6 in addition to the Therabiotic.
Exciting behavior changes correlating to full dose of Cytoflora and
addition of Therabiotic (since nothing else has changed)
- Oct 7 – OT therapists noticing better attention and commented on it
- Oct 8 – Daycare at the Gym commented that he was talking
noticeably more
- Oct 10 – independently said “Love You Too” for the first
time in almost a year during bedtime routine.
- Oct 13 – huge jump in free operant pairing (verbal attempts)
at Alpine to 124 – first time ever to break 100. It stayed over 100
until the week he got sick, when it dropped down to 60-80 per day
while he felt bad
- Oct 14 – First time since starting ABA to get a 100% on the
eye contact program And most excitingly, he has had perfect eye
contact EVERY therapy day since even while he was sick
- Nov 10 – big leap to another record day at Alpine – 152 free
operant pairings, and a major cognitive leap w/block imitation (went
from doing 6 blocks, to 10)
- Just in the past week, he’s started putting his own laundry
away, helping me feed the birds in the morning, and we’ve been able to
remove the booster seat slash containment device from the dinner table
and he’s no longer eloping.
So, his tummy’s still a mess, and I really think what happened is
H1N1 shredded the delicate balance we’d managed to get to and he’s
SLOWLY getting back. I think we’ve got more yeast going on, too, based
on the amount of inappropriate giggling.
Sleep is mostly good. When he’s sick, he wakes up a couple of times a
night, but for the most part, he’s getting a solid 11 hours of sleep.
Questions etc, for 11-19 appt:
Testing followup questions:
Molybdenum – should we supplement with it when we start w/the OSR?
Can we reduce supplemental levels of Lithium, Zinc, Copper based on
the lab results?
Did he come back w/high testosterone?
What did the metals test pull – the urine sample was the grossest
thing ever – looked like pulpy orange juice in color and texture, so
definitely pulled something out.
Other Questions:
Have we ever tested Dominic’s thyroid? Hypothroidism runs in the
family, and I just saw a possibility online that low iodine in the
thyroid makes it harder to fight candida
http://candidablog4u.com/the-importance-of-iodine/
all the hoopla about XMRV makes me really want to get Dominic tested
for it. Supposedly this company has patented the test and is offering
it - http://vipdx.com/. What is your opinion?
After we get his gut cleaned back up, and see how we do on OSR, I
really still want to do something to work on his right/left brain
hemispheric communication. I asked about piracetam
(http://www.harvesthealth.com/pi800mg120ca.html) last appt, but we
didn’t really get to a discussion point. I’d really like to know
about either starting it or aniracetam
(http://www.harvesthealth.com/an750mg60caf.html). If you could please
let me know which would make more sense with the goal being more
speech and better left/right brain communication, I’d appreciate it.
I expect its still 3-4 months away – I want to do at least 6 weeks
with OSR being the only supplement added.
I am planning on holding off on the stool test I have in the closet
until he’s had at least 2 weeks of healthy looking poop. Do you agree
or should I wait longer?
Sunday, November 15, 2009
Bloggity Catch up date
Wow, what a busy week.
Lets see if I can hit it all
- Dominic is still having tummy issues. They're slowly starting to clear up, we think. We have an appointment the end of this week with Dr Kucera, and at this rate, i suspect they'll want to see him.
- Dominic has learned how to put his own laundry away. Its very cute. He's also very much wanting to help do things like cook and feed the birds. The interaction is really nice to see
- We had a chili party last night and Dominic's interactions with everyone were EXCELLENT. He sat nicely at the little table in our living room with his friend Auri and ate dinner. He interacted moderately with adults he doesn't see very often (way better than going and hiding in his room being overwhelmed with the crowd. And generally did great. Little bit of yeastie giggles, but no behavior issues.
- Dominics speech is coming back up. We had one really chatty day at Alpine last week with 152 words. the rest were over 100, so we seem to be back to where we were before the flu. This is good.
- Apparently Dominic likes rollercoasters. Alpine had a field trip on Friday to The North Pole (up the pass) and apparently he had a BLAST. I'm excited to see pictures from it. I guess he rode the rollercoaster twice. He takes after Mom. (Dad doesn't do rollercoasters)
- Dominic had a dentist appointment on Thursday and the positive was that this is the first the dentist has been able to get an instrument into his mouth (third visit...), the negative is that instrument showed way more cavities than we expected - he's got 6. Which floors us because he gets brushed twice daily, and for all intents and purposes has no sugar in his diet at this point. As well as multiple daily exposures to xylitol which is supposed to strengthen tooth enamel. The dentist really wants to do full sedation in an OR for the fillings, but neither this year or next years health insurance will cover it, so its either going to be conscious sedation in the dentist office or not at all. They're supposed to call me back.
- Tuesday I'm having a touch base meeting with the teacher, supplemental services, and speech therapist for Dominic. i've also got to pick up a choice permit for him to stay in this school next year. We're in the process of setting up a meeting with the principal and special ed folks he'd be working with next year. So long as I don't get any major red flag feelings from them and their sp. ed. policies, we'll do our best to stay there. Technically its not our home school, but i'm really hoping we can stay.
- Dominic's preschool teacher reports that he's doing much better with peer interaction and is now turn taking with other children during play. Not verbal yet, but its coming. She's also got him verbally asking for snack.
Lets see if I can hit it all
- Dominic is still having tummy issues. They're slowly starting to clear up, we think. We have an appointment the end of this week with Dr Kucera, and at this rate, i suspect they'll want to see him.
- Dominic has learned how to put his own laundry away. Its very cute. He's also very much wanting to help do things like cook and feed the birds. The interaction is really nice to see
- We had a chili party last night and Dominic's interactions with everyone were EXCELLENT. He sat nicely at the little table in our living room with his friend Auri and ate dinner. He interacted moderately with adults he doesn't see very often (way better than going and hiding in his room being overwhelmed with the crowd. And generally did great. Little bit of yeastie giggles, but no behavior issues.
- Dominics speech is coming back up. We had one really chatty day at Alpine last week with 152 words. the rest were over 100, so we seem to be back to where we were before the flu. This is good.
- Apparently Dominic likes rollercoasters. Alpine had a field trip on Friday to The North Pole (up the pass) and apparently he had a BLAST. I'm excited to see pictures from it. I guess he rode the rollercoaster twice. He takes after Mom. (Dad doesn't do rollercoasters)
- Dominic had a dentist appointment on Thursday and the positive was that this is the first the dentist has been able to get an instrument into his mouth (third visit...), the negative is that instrument showed way more cavities than we expected - he's got 6. Which floors us because he gets brushed twice daily, and for all intents and purposes has no sugar in his diet at this point. As well as multiple daily exposures to xylitol which is supposed to strengthen tooth enamel. The dentist really wants to do full sedation in an OR for the fillings, but neither this year or next years health insurance will cover it, so its either going to be conscious sedation in the dentist office or not at all. They're supposed to call me back.
- Tuesday I'm having a touch base meeting with the teacher, supplemental services, and speech therapist for Dominic. i've also got to pick up a choice permit for him to stay in this school next year. We're in the process of setting up a meeting with the principal and special ed folks he'd be working with next year. So long as I don't get any major red flag feelings from them and their sp. ed. policies, we'll do our best to stay there. Technically its not our home school, but i'm really hoping we can stay.
- Dominic's preschool teacher reports that he's doing much better with peer interaction and is now turn taking with other children during play. Not verbal yet, but its coming. She's also got him verbally asking for snack.
Sunday, November 8, 2009
Quickie updates
Overall, a good weekend with Dominic.
I had a long conversation with the Doctors office Thurs and they called back Friday. We are sending in a urine sample for another OAT test to see if we can figure out exactly whats gonig on in his gut. Actually they said, either OAT or the stool test thats languishing in my cubbard. Kiddo has explosive poop, i'm SO NOT doing a stool test. Anyway, we'll fedex that off tomorrow. yippee skippee.
Dominic is acting more energetic this weekend. He's still low on the vocal side, but for the first time EVER today (well, granted, first time i've ever asked him to), he put his laundry away after I folded it. I did give him one type at a time, and by the time he got it in the right drawer, it was unfolded, but i'd say its a nice step for him to start doing some chores.
Also this morning he fed the birds and got them fresh water (with supervision from me to make sure he didn't give them too much food.
He played all afternoon with his large ToMater truck (its a tow truck) and a large car - and he played appropriately, they raced, and the tow truck towed the car. It was very cute.
Dominic's appetite is back, too, which is very nice to see.
I had a long conversation with the Doctors office Thurs and they called back Friday. We are sending in a urine sample for another OAT test to see if we can figure out exactly whats gonig on in his gut. Actually they said, either OAT or the stool test thats languishing in my cubbard. Kiddo has explosive poop, i'm SO NOT doing a stool test. Anyway, we'll fedex that off tomorrow. yippee skippee.
Dominic is acting more energetic this weekend. He's still low on the vocal side, but for the first time EVER today (well, granted, first time i've ever asked him to), he put his laundry away after I folded it. I did give him one type at a time, and by the time he got it in the right drawer, it was unfolded, but i'd say its a nice step for him to start doing some chores.
Also this morning he fed the birds and got them fresh water (with supervision from me to make sure he didn't give them too much food.
He played all afternoon with his large ToMater truck (its a tow truck) and a large car - and he played appropriately, they raced, and the tow truck towed the car. It was very cute.
Dominic's appetite is back, too, which is very nice to see.
Thursday, November 5, 2009
This is full of gross bodily fluid details, but I’m writing it down anyway. Feel free to move right along.
As you all know, I keep a spreadsheet of Dominic’s health – including his sleep times, behavior, any changes in supplements, his skin, and his stools. Doctors LOVE this spreadsheet because its extremely specific, and we can track things very well. I’ve been so glad lately that we keep track of this because it shows his tummy’s been really distressed now for a few weeks.
Dominic’s first symptom of H1N1 was diarrhea Monday October 21st after school. Tuesday morning he’d spiked a fever and we kept him home. He had a fever and diarrhea Tuesday and Wednesday, and it broke late Wednesday night. Thursday he still had diarrhea so we kept him home, and Friday he didn’t have school or Alpine due to their schedules so he had more rest. He developed a dry cough about this time. The diarrhea was for that week yellow with undigested food (so all bile), and he was not holding food in for more than a half an hour at best. It continued like that the week of October 26, but as the week progessed, it started changing color to the expected brown, and there was less undigested food. His behavior and energy level were normal all week and he was in school all week. Saturday, Halloween, he seemed to tire early, and so we skipped trick or treating and he was in bed asleep by 7. Saturday his dry cough started to sound a little wet. Sunday afternoon he was a bit lethargic, and had a fever of 102. Sunday evening, he crashed hard and was ready for bed by 6. His diarrhea started turning grayish and there was undigested food again. Monday morning, no temp, so we sent him to school. They called at 10 to tell me he’d been a little lethargic, so they took his temperature and it was 103.8 (they were really surprised because he didn’t seem “THAT Lethargic”. I went to get him and he spent the rest of Monday asleep on the couch, outside the time when we went to the doctor to make sure that we were still just dealing with something viral. We are – and his lungs sound clear. She prescribed rest and fluids. Monday evening, he threw up. His appetite had almost disappeared at this point. All day Monday, I couldn’t get his temperature under 102 with medication, so after dinner, I made his bath lukewarm and that broke his fever. He went to bed running 98.4. he was 99 at 10pm but woke up at midnight at 102 again, so we medicated. Tuesday morning, he was under 101, so we didn’t medicate, and his temp ended up breaking without medication by Tuesday afternoon. We kept him home from both school and Alpine all day Tuesday and school Wednesday. He did go to Alpine yesterday afternoon. Their report was that he was very quiet and distracted. We came home from Alpine and he had diarrhea 4 times in an hour (we figured he’d been holding it at Alpine). For us yesterday, he was a gigglebox, which is a sign of yeast. So I gave him a double dose of activated Charcoal after school (which should’ve stopped the diarrhea. It didn’t)We went to Occupational therapy, and he did really well. He woke up this morning and is still having diarrhea, which is now black from the charcoal. Fun. At least the giggles stopped. His appetite is still really low, and we’re trying to focus on gentle gut things like broth and bananas and rice.
Over the course of the past 3 weeks of this, I’ve been in regular contact with our nurse at Dr. Kucera’s office, Jessica. I talked to her again this morning. We are clearly behind in our “plan” – by this point we should’ve done a stool test and started OSR. Well, she agrees with me that we need to hold off on the OSR until his tummy heals up and we get the yeast more under control. And that it’s a waste of money ($300 test) to do the stool test when he’s in the middle of a viral induced diarrhea flare. I was supposed to go in and just talk w/Dr Kucera about test results without Dominic on 11-19 but at this point, he may need to be seen, so that may morph into a different appointment, we’ll decide next week. We’ll just wait a while for the OSR.
We do have our yearly followup appointment with the neurologist now on the calendar. I remembered that last year it took 2 months to get the appointment, so I called today and our appointment is mid January. Right at a year from when we saw him last. That should be interesting, since the one thing he suggested to us, IVIG, our then pediatrician was supposed to call us back about after speaking to the neurologist, and never did. We no longer see that pediatrician.
The big question is still, will this double round of high fevers cause any regression. Right now, in the thick of the gut stuff it seems like it has to Rod and I, but truthfully, its probably too early to tell. He’s still doing the labeling of his favorite night time book – albeit a bit slower, but everything is harder for him while he’s actually sick. He’s still doing the good night routine with us. He is more irritable and distracted, but that can be explained by his sore tummy (sore tummies make EVERYONE more irritable and distracted). We’re working hard to make sure we’re expecting him to label things and use his words, and hopefully when we get through the sore tummy stuff, it’ll be without regression.
Dominic’s first symptom of H1N1 was diarrhea Monday October 21st after school. Tuesday morning he’d spiked a fever and we kept him home. He had a fever and diarrhea Tuesday and Wednesday, and it broke late Wednesday night. Thursday he still had diarrhea so we kept him home, and Friday he didn’t have school or Alpine due to their schedules so he had more rest. He developed a dry cough about this time. The diarrhea was for that week yellow with undigested food (so all bile), and he was not holding food in for more than a half an hour at best. It continued like that the week of October 26, but as the week progessed, it started changing color to the expected brown, and there was less undigested food. His behavior and energy level were normal all week and he was in school all week. Saturday, Halloween, he seemed to tire early, and so we skipped trick or treating and he was in bed asleep by 7. Saturday his dry cough started to sound a little wet. Sunday afternoon he was a bit lethargic, and had a fever of 102. Sunday evening, he crashed hard and was ready for bed by 6. His diarrhea started turning grayish and there was undigested food again. Monday morning, no temp, so we sent him to school. They called at 10 to tell me he’d been a little lethargic, so they took his temperature and it was 103.8 (they were really surprised because he didn’t seem “THAT Lethargic”. I went to get him and he spent the rest of Monday asleep on the couch, outside the time when we went to the doctor to make sure that we were still just dealing with something viral. We are – and his lungs sound clear. She prescribed rest and fluids. Monday evening, he threw up. His appetite had almost disappeared at this point. All day Monday, I couldn’t get his temperature under 102 with medication, so after dinner, I made his bath lukewarm and that broke his fever. He went to bed running 98.4. he was 99 at 10pm but woke up at midnight at 102 again, so we medicated. Tuesday morning, he was under 101, so we didn’t medicate, and his temp ended up breaking without medication by Tuesday afternoon. We kept him home from both school and Alpine all day Tuesday and school Wednesday. He did go to Alpine yesterday afternoon. Their report was that he was very quiet and distracted. We came home from Alpine and he had diarrhea 4 times in an hour (we figured he’d been holding it at Alpine). For us yesterday, he was a gigglebox, which is a sign of yeast. So I gave him a double dose of activated Charcoal after school (which should’ve stopped the diarrhea. It didn’t)We went to Occupational therapy, and he did really well. He woke up this morning and is still having diarrhea, which is now black from the charcoal. Fun. At least the giggles stopped. His appetite is still really low, and we’re trying to focus on gentle gut things like broth and bananas and rice.
Over the course of the past 3 weeks of this, I’ve been in regular contact with our nurse at Dr. Kucera’s office, Jessica. I talked to her again this morning. We are clearly behind in our “plan” – by this point we should’ve done a stool test and started OSR. Well, she agrees with me that we need to hold off on the OSR until his tummy heals up and we get the yeast more under control. And that it’s a waste of money ($300 test) to do the stool test when he’s in the middle of a viral induced diarrhea flare. I was supposed to go in and just talk w/Dr Kucera about test results without Dominic on 11-19 but at this point, he may need to be seen, so that may morph into a different appointment, we’ll decide next week. We’ll just wait a while for the OSR.
We do have our yearly followup appointment with the neurologist now on the calendar. I remembered that last year it took 2 months to get the appointment, so I called today and our appointment is mid January. Right at a year from when we saw him last. That should be interesting, since the one thing he suggested to us, IVIG, our then pediatrician was supposed to call us back about after speaking to the neurologist, and never did. We no longer see that pediatrician.
The big question is still, will this double round of high fevers cause any regression. Right now, in the thick of the gut stuff it seems like it has to Rod and I, but truthfully, its probably too early to tell. He’s still doing the labeling of his favorite night time book – albeit a bit slower, but everything is harder for him while he’s actually sick. He’s still doing the good night routine with us. He is more irritable and distracted, but that can be explained by his sore tummy (sore tummies make EVERYONE more irritable and distracted). We’re working hard to make sure we’re expecting him to label things and use his words, and hopefully when we get through the sore tummy stuff, it’ll be without regression.
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