I haven't had much time to look at these and compare, but here are videos from September 9 (the day after our first DAN! appt, not yet doing biomeds, and about a month GFCF) and today, November 23 (about 3 1/2 months GFCF, two months of MB12, enzymes, probiotics, DMG, taurine) and 10 HBOT sessions.
Same shirt, same chair, playing with playdough about the same time of day.
Sunday, November 23, 2008
Saturday, November 22, 2008
10 of 40: Exhaustion and payoff
Phew, 10 HBOT sessions complete. 30 more to go.
Riley is accepting this, and I think I am too. It's not as big of a deal. The drive stinks, and working out childcare for Jack while we're in there. We'll get through it though. I'm even getting used to driving on the freeway. And as far as the dives go, we get in the chamber and busy ourselves and it's fine. He's taken to playing bristle blocks and watching the same Wiggles video over and over. I've taken to not bringing in my cell phone, because it's torture to have any concept of time. It's boring. But, when I try to look at it as spending time with Riley and working on things with him, it goes by quicker. We've been building things with bristle blocks and using certain blocks included in them as "Riley" and "Jack" and "Daddy." This has been fun with imagination skills. He is slowly getting better with that.
Thursday I was able to meet with Dr Van Dyke to go over Riley's stool analysis results. He has no big issues with that. No yeast, no "bad" bacteria. Just a little imbalances with flora that we can work on with probiotics. The other thing that was found with that was his sIgA level was really low. This just means he has a pretty thin protective layer in his gut. This will likely get better as his gut is healing, but Dr Van Dyke also mentioned tumeric as an idea. At this point, we'll wait until after HBOT. I spent about a half hour after that just talking with him. It was really nice. I love the atmosphere at the center. I love that everyone is so laid back and child-oriented. There is a kitchen there which is nice too, packing food just sucks some days. And it's nice when we see the Dr and his family grabbing lunch in there beforehand. I had an opportunity to meet his wife this week as well. She's great. Just starting a TACA chapter here.
On Friday morning our session was a little rough at the end. Riley started saying "Mama put on the ears! Put on the ears" And I couldn't understand what that meant. Eventually I figured out it might be his ears hurting from the pressure. It's much like taking off or landing on a flight. Your ears pop and when you are three and have autism, you don't know how to make them unpop. So before our afternoon session, Dr Van Dyke took a quick (very gentle and patient) look at his ears. He said that the right was a bit red, but not inflamed and we could go ahead with the session. They brought us up to pressure very, very slowly and came down slowly again. No big deal. I hope that having two days off on the weekend will help his ear heal so it can handle another 6 sessions, a break for Thanksgiving, and another two on Friday.
We haven't seen much difference so far. We've had a few things he's said very clearly and he's been VERY affectionate with me. But I think that's having to do with being in the chamber together almost three hours a day.
But tonight, he had a few "firsts." He was asking for a bottle of hemp milk (he has hemp milk/rice milk in a bottle before bed) I said, "Ask your Daddy for some hemp milk." He did his usual and said "Have bottle 'temp' milk?" I corrected him a bit and said "Daddy, can I have some hemp milk?" He then repeated that exactly. This is the first time I've heard him say "Can I?" and also the first time I realized he knew what it meant to ask someone for something. When my husband didn't respond, he said "Please. Please have 'temp' milk?" I was literally clapping and cheering. I have been working on "Please" with him for over a month, perhaps two. He doesn't say it on his own often at all. This was pretty awesome.
Also earlier this afternoon my husband had patched an area of the wall in the living room and primed it. While Riley was napping, he painted over the primed area. Riley got up and said "Where it go?" I don't recall him ever asking that, either.
Small gains, as always, but gains nonetheless. I think back to several months ago when my son hadn't even called me "mama" or played pretend with anything, or even made a noise imitating what a car sounds like while playing cars. He's come so very far. We're only 10 sessions in! I hope that we continue to have nights like tonight.
On other news, we finally started saccromyces boullardii last Sunday. I would like to work on getting more of it into him, especially because I think he's had a bit of die-off with this treatment.
I also sent off Riley's urine this week for some metabolic screenings and OAT (organic acids) testing. Very soon we'll be doing the autism panel, the DNA/RNA stuff and the porphryns testing (this one is big, because it's the "heavy metals" testing) For that one, we send his urine to France of all places. But hopefully it will help us keep working on the best protocol for his individual issues.
I could say so much. This has been a big last week or so. I've had a lot of family and friends calling and emailing. We've had a few very generous friends (and family friends) who have stuck cash in our hands. But most important is the support... the emails, the calls, etc. Those who want to know how it's going and how they can help us. I'm very glad we shared what we were doing and opened it up. Even though not everyone believes in what we are doing or even acknowledges that we're doing anything more that Quack medicine (Ugh, it's legit, people! Take a look at some studies! Take a look at some recovered kids!) We still are so grateful to have people in our lives who are there for us. It means a lot.
Riley is accepting this, and I think I am too. It's not as big of a deal. The drive stinks, and working out childcare for Jack while we're in there. We'll get through it though. I'm even getting used to driving on the freeway. And as far as the dives go, we get in the chamber and busy ourselves and it's fine. He's taken to playing bristle blocks and watching the same Wiggles video over and over. I've taken to not bringing in my cell phone, because it's torture to have any concept of time. It's boring. But, when I try to look at it as spending time with Riley and working on things with him, it goes by quicker. We've been building things with bristle blocks and using certain blocks included in them as "Riley" and "Jack" and "Daddy." This has been fun with imagination skills. He is slowly getting better with that.
Thursday I was able to meet with Dr Van Dyke to go over Riley's stool analysis results. He has no big issues with that. No yeast, no "bad" bacteria. Just a little imbalances with flora that we can work on with probiotics. The other thing that was found with that was his sIgA level was really low. This just means he has a pretty thin protective layer in his gut. This will likely get better as his gut is healing, but Dr Van Dyke also mentioned tumeric as an idea. At this point, we'll wait until after HBOT. I spent about a half hour after that just talking with him. It was really nice. I love the atmosphere at the center. I love that everyone is so laid back and child-oriented. There is a kitchen there which is nice too, packing food just sucks some days. And it's nice when we see the Dr and his family grabbing lunch in there beforehand. I had an opportunity to meet his wife this week as well. She's great. Just starting a TACA chapter here.
On Friday morning our session was a little rough at the end. Riley started saying "Mama put on the ears! Put on the ears" And I couldn't understand what that meant. Eventually I figured out it might be his ears hurting from the pressure. It's much like taking off or landing on a flight. Your ears pop and when you are three and have autism, you don't know how to make them unpop. So before our afternoon session, Dr Van Dyke took a quick (very gentle and patient) look at his ears. He said that the right was a bit red, but not inflamed and we could go ahead with the session. They brought us up to pressure very, very slowly and came down slowly again. No big deal. I hope that having two days off on the weekend will help his ear heal so it can handle another 6 sessions, a break for Thanksgiving, and another two on Friday.
We haven't seen much difference so far. We've had a few things he's said very clearly and he's been VERY affectionate with me. But I think that's having to do with being in the chamber together almost three hours a day.
But tonight, he had a few "firsts." He was asking for a bottle of hemp milk (he has hemp milk/rice milk in a bottle before bed) I said, "Ask your Daddy for some hemp milk." He did his usual and said "Have bottle 'temp' milk?" I corrected him a bit and said "Daddy, can I have some hemp milk?" He then repeated that exactly. This is the first time I've heard him say "Can I?" and also the first time I realized he knew what it meant to ask someone for something. When my husband didn't respond, he said "Please. Please have 'temp' milk?" I was literally clapping and cheering. I have been working on "Please" with him for over a month, perhaps two. He doesn't say it on his own often at all. This was pretty awesome.
Also earlier this afternoon my husband had patched an area of the wall in the living room and primed it. While Riley was napping, he painted over the primed area. Riley got up and said "Where it go?" I don't recall him ever asking that, either.
Small gains, as always, but gains nonetheless. I think back to several months ago when my son hadn't even called me "mama" or played pretend with anything, or even made a noise imitating what a car sounds like while playing cars. He's come so very far. We're only 10 sessions in! I hope that we continue to have nights like tonight.
On other news, we finally started saccromyces boullardii last Sunday. I would like to work on getting more of it into him, especially because I think he's had a bit of die-off with this treatment.
I also sent off Riley's urine this week for some metabolic screenings and OAT (organic acids) testing. Very soon we'll be doing the autism panel, the DNA/RNA stuff and the porphryns testing (this one is big, because it's the "heavy metals" testing) For that one, we send his urine to France of all places. But hopefully it will help us keep working on the best protocol for his individual issues.
I could say so much. This has been a big last week or so. I've had a lot of family and friends calling and emailing. We've had a few very generous friends (and family friends) who have stuck cash in our hands. But most important is the support... the emails, the calls, etc. Those who want to know how it's going and how they can help us. I'm very glad we shared what we were doing and opened it up. Even though not everyone believes in what we are doing or even acknowledges that we're doing anything more that Quack medicine (Ugh, it's legit, people! Take a look at some studies! Take a look at some recovered kids!) We still are so grateful to have people in our lives who are there for us. It means a lot.
Tuesday, November 18, 2008
4 of 40
Well, we've got 4 HBOT dives of 40 complete. But not without a little drama.
I prepared Riley for all of it. We talked about it a lot, he'd seen the HBOT's, we watched videos, looked at pictures, etc. I knew that the hood would be an issue. The first dive, he cried and cried. The whole thing really freaked him out. I think also because there was a light on that caused a reflection on the hood. After about 30-40 min, he was okay, but it was rough at first. I kept thinking "Lord help me if the next 4 weeks are like this... poor kid."
I worried that when we went back in the afternoon he'd be totally traumatized. He was a little upset by the hood, but after about 30 seconds was fine. We watched a movie, read books and snuggled. Today was fine, we watched movies, read books, did lacing cards, chit-chatted (I love that I can say we did this) and it was extremely boring (for me) but fine. I think it will be smooth sailing from here. He was pretty "stimmy" with the second dive today, but I've heard that also goes away in time.
We are all very tired though. I could not sleep a wink last night. I literally was up all night. Come to find out some people have this as a "side effect" from the oxygen. Tonight I'm taking benadryl. LOL Because I was so tired, I asked my mom to drive us this morning. Thankfully, she was able to move her day around a little and be there. My mother in law came too, but my kids don't know her as well. It was good all around, she's going to be watching Jack three days per week, or about that, so he needed to warm up to her a bit.
Jack's nap has shifted a bit earlier. Lunch isn't at 11 o'clock on the dot anymore. Therapy is earlier. We'll get used to it. I'll get used to the drive, too. It initially worried me, but not anymore.
People come there from all over. There are people coming right now from 12+ hours away, staying here the week in a hotel, then driving home on the weekends. And some of these mothers have other kids. I can't imagine. I was telling my mom and DH that I don't think it's any coincidence this place is just on the other side of town. I really think this treatment was one we were supposed to do.
My other complaint, other than it being boring, and ears popping, is how freaking HOT it is in there. I get all sweaty. Maybe I'll think about dressing in layers tomorrow.
Riley is continuing to use the potty. I'm so amazed at this, it happened so suddenly. He stayed dry for about 3 hours during our "break" between dives today. He's also learning to let more urine out when he goes, which is a big plus. I'm hoping that after this treatment is complete, we'll be able to work on it. Pretty exciting.
Anyhow, life is mostly HBOT right now and will be for four weeks. I'll do my best to journal it!
I prepared Riley for all of it. We talked about it a lot, he'd seen the HBOT's, we watched videos, looked at pictures, etc. I knew that the hood would be an issue. The first dive, he cried and cried. The whole thing really freaked him out. I think also because there was a light on that caused a reflection on the hood. After about 30-40 min, he was okay, but it was rough at first. I kept thinking "Lord help me if the next 4 weeks are like this... poor kid."
I worried that when we went back in the afternoon he'd be totally traumatized. He was a little upset by the hood, but after about 30 seconds was fine. We watched a movie, read books and snuggled. Today was fine, we watched movies, read books, did lacing cards, chit-chatted (I love that I can say we did this) and it was extremely boring (for me) but fine. I think it will be smooth sailing from here. He was pretty "stimmy" with the second dive today, but I've heard that also goes away in time.
We are all very tired though. I could not sleep a wink last night. I literally was up all night. Come to find out some people have this as a "side effect" from the oxygen. Tonight I'm taking benadryl. LOL Because I was so tired, I asked my mom to drive us this morning. Thankfully, she was able to move her day around a little and be there. My mother in law came too, but my kids don't know her as well. It was good all around, she's going to be watching Jack three days per week, or about that, so he needed to warm up to her a bit.
Jack's nap has shifted a bit earlier. Lunch isn't at 11 o'clock on the dot anymore. Therapy is earlier. We'll get used to it. I'll get used to the drive, too. It initially worried me, but not anymore.
People come there from all over. There are people coming right now from 12+ hours away, staying here the week in a hotel, then driving home on the weekends. And some of these mothers have other kids. I can't imagine. I was telling my mom and DH that I don't think it's any coincidence this place is just on the other side of town. I really think this treatment was one we were supposed to do.
My other complaint, other than it being boring, and ears popping, is how freaking HOT it is in there. I get all sweaty. Maybe I'll think about dressing in layers tomorrow.
Riley is continuing to use the potty. I'm so amazed at this, it happened so suddenly. He stayed dry for about 3 hours during our "break" between dives today. He's also learning to let more urine out when he goes, which is a big plus. I'm hoping that after this treatment is complete, we'll be able to work on it. Pretty exciting.
Anyhow, life is mostly HBOT right now and will be for four weeks. I'll do my best to journal it!
Saturday, November 15, 2008
New "ball pit," wrestling mats my brother gave us, hopper ball my parents got Riley for his birthday, hula hoop a friend made us. Yes, we're getting quite the "therapy" room.What changed? We started MB12 every other day this last week. Coincidence? I don't know.
HBOT preparations are in full swing. I have a huge list of things to do. I have meals planned. I have a bag of snacks packed. I have a list of things to grab to bring with us.
Just by chance, a local station did a story on HBOT a few nights ago. There is a video posted here. The Dr they interview is our DAN! Dr. The center is where Riley will be receiving the HBOT. He's been talking about it and telling me the story about going there, putting a hood on his head, watching a DVD. I've been talking with him a lot, and I think he understands, sort of. But it remains to be seen what it will actually be like. We'll get through it.
I'm mentally and physically exhausted and I can't write how I'd like. I had a rough night last night, emotions coming up about all of this. I think what's hardest is that it is so isolating, so few people really understand. Thank you to those of you who read this and are supporting us unconditionally. It means a lot.
Here's to the next step.
Tuesday, November 11, 2008
Diving in, and coming out
Emotions have been running high the past couple of weeks, but especially this last week. We finally solidified plans to start four weeks of HBOT therapy (next Monday!!) and of course all of the planning that goes along with that.
For some reason, I felt it important to inform our family and friends of what we were doing. Especially my colleagues that are so used to me being involved in so much. For one month of my life, I will be going back and forth from HBOT, trying to balance therapies, nap time, and life in there somewhere. It will be a strange experience for me. No busier than usual, but devoting most of my energy to one thing: my children. It has been a while. And I don't say that in a guilty way. I have done what I've needed to do to make it through all of this alive. But, I have strong feelings about what this will be like. I think it will be a major period of growth, not just for Riley, but us as a family. I look forward to documenting the HBOT treatment. My mom is going to be going with us our first day, so it will be a big help overcoming all of the emotion that goes along with such a big undertaking.
So yesterday I began calling people. And then today I emailed most everyone on my contacts. The response has been what I expected. Some stunned, some supportive, some just quiet.
I do have some very lovely, generous friends and family. My mom is taking a family leave to help us with Jack in the afternoons, for a normal nap time and hopefully a little attention paid to him. I can't imagine dragging him along for each and every dive. My mother in law is going to switch her jobs around to be available for some mornings. Friends have offered to fill in where needed. Meals are being prepared for us, even with our insane GFCFSFCF label.
I still need to make a few calls before I feel the weight has been lifted. I'm not sure why I felt like it was time NOW to tell people about our journey. But for whatever reason, I was ready. DH still doesn't like talking about it. But me? I need all the support I can get.
I have spent so much time crying the past few days. Bless my mom. Bless her. She sits and listens for hours each week.
Tomorrow I have a bit of escape in the morning, my last "free" morning before HBOT... my babysitter comes. Then the afternoon is busy with therapy and a meeting for me. I know the rest of the week will zoom by and before we know it, I will be sitting in the chamber with Riley, 1/40 of the way there.
Hope is amazing, isn't it?
At the risk of sounding extremely flaky, I will share this before I go to bed. Several months ago, when we were still in a fog of "did we seriously get a diagnosis of autism?" I had a dream. In it, I met a young man in a store. He came up to me, telling me this and that. How I could help him. The young man was tall, a husky build. Dark blonde hair, glasses, and a killer smile. In my dream, I wondered, is he flirting with me? Or is he just trying to get my attention. I told him "Sure, I'll help you. But I want to know your name first!"
He told me his name was Riley.
From that point on, this was my image of my grown son. Obviously indistinguishable from any other guy. Conversational. Attractive, flirty, social. It is like I was able to meet him as he could be, I just had to help him to get there.
I won't stop believing that was my Riley. I won't stop believing that he can get there. There are all of these what if's, fears, doubts. They have come up the last few days. Am I not accepting him for who he is by seeking biomedical answers? Of course I am. But why not strive to imagine that he will heal. Why not desire the full recovery. Dr Van Dyke said at our first appointment that recovery could be "every parent's goal." He fully believes it's attainable. As a parent, as a Dr. And I do too.
For some reason, I felt it important to inform our family and friends of what we were doing. Especially my colleagues that are so used to me being involved in so much. For one month of my life, I will be going back and forth from HBOT, trying to balance therapies, nap time, and life in there somewhere. It will be a strange experience for me. No busier than usual, but devoting most of my energy to one thing: my children. It has been a while. And I don't say that in a guilty way. I have done what I've needed to do to make it through all of this alive. But, I have strong feelings about what this will be like. I think it will be a major period of growth, not just for Riley, but us as a family. I look forward to documenting the HBOT treatment. My mom is going to be going with us our first day, so it will be a big help overcoming all of the emotion that goes along with such a big undertaking.
So yesterday I began calling people. And then today I emailed most everyone on my contacts. The response has been what I expected. Some stunned, some supportive, some just quiet.
I do have some very lovely, generous friends and family. My mom is taking a family leave to help us with Jack in the afternoons, for a normal nap time and hopefully a little attention paid to him. I can't imagine dragging him along for each and every dive. My mother in law is going to switch her jobs around to be available for some mornings. Friends have offered to fill in where needed. Meals are being prepared for us, even with our insane GFCFSFCF label.
I still need to make a few calls before I feel the weight has been lifted. I'm not sure why I felt like it was time NOW to tell people about our journey. But for whatever reason, I was ready. DH still doesn't like talking about it. But me? I need all the support I can get.
I have spent so much time crying the past few days. Bless my mom. Bless her. She sits and listens for hours each week.
Tomorrow I have a bit of escape in the morning, my last "free" morning before HBOT... my babysitter comes. Then the afternoon is busy with therapy and a meeting for me. I know the rest of the week will zoom by and before we know it, I will be sitting in the chamber with Riley, 1/40 of the way there.
Hope is amazing, isn't it?
At the risk of sounding extremely flaky, I will share this before I go to bed. Several months ago, when we were still in a fog of "did we seriously get a diagnosis of autism?" I had a dream. In it, I met a young man in a store. He came up to me, telling me this and that. How I could help him. The young man was tall, a husky build. Dark blonde hair, glasses, and a killer smile. In my dream, I wondered, is he flirting with me? Or is he just trying to get my attention. I told him "Sure, I'll help you. But I want to know your name first!"
He told me his name was Riley.
From that point on, this was my image of my grown son. Obviously indistinguishable from any other guy. Conversational. Attractive, flirty, social. It is like I was able to meet him as he could be, I just had to help him to get there.
I won't stop believing that was my Riley. I won't stop believing that he can get there. There are all of these what if's, fears, doubts. They have come up the last few days. Am I not accepting him for who he is by seeking biomedical answers? Of course I am. But why not strive to imagine that he will heal. Why not desire the full recovery. Dr Van Dyke said at our first appointment that recovery could be "every parent's goal." He fully believes it's attainable. As a parent, as a Dr. And I do too.
Saturday, November 8, 2008
Another milestone
Riley played catch with me for the first time tonight.
He was never able to do this before, in fact he really wasn't able to throw a ball, either. This is very, very new. He had the ball and threw it to me saying "Catch!" I caught it and tossed it about 2 feet back to him. He missed the first few times but eventually DID catch it. And then threw it back to me. It only lasted about 2 minutes or so, but this was huge.
Cod Liver Oil anyone? I think this is a visual improvement.
And one side note before I head to bed: I think we will be starting HBOT within the next few weeks. I will have to post about it when I have more time. Very big commitment!
He was never able to do this before, in fact he really wasn't able to throw a ball, either. This is very, very new. He had the ball and threw it to me saying "Catch!" I caught it and tossed it about 2 feet back to him. He missed the first few times but eventually DID catch it. And then threw it back to me. It only lasted about 2 minutes or so, but this was huge.
Cod Liver Oil anyone? I think this is a visual improvement.
And one side note before I head to bed: I think we will be starting HBOT within the next few weeks. I will have to post about it when I have more time. Very big commitment!
Thursday, November 6, 2008
The words we all wait to hear
"Love you, mama."
-Riley, at 12:17 pm, November 6, 2008
I'm just speechless. It was so sweet. He asked to get up and snuggle in my lap, he came up and was nuzzling into me and I kissed his cheeks. He started saying "Ohhh mama." and "Snuggle mama." and then said "Love you, mama." Sigh. Sniff. That's a moment worth remembering.
Also the last few days he just seems more aware. Today, Jack (his younger brother) threw a Little People person across the room. Riley said "No hurt person. You okay person?"
He also understands now the concept of a red light meaning stop, a green light meaning go.
Subtle changes, but they are happening again!!
-Riley, at 12:17 pm, November 6, 2008
I'm just speechless. It was so sweet. He asked to get up and snuggle in my lap, he came up and was nuzzling into me and I kissed his cheeks. He started saying "Ohhh mama." and "Snuggle mama." and then said "Love you, mama." Sigh. Sniff. That's a moment worth remembering.
Also the last few days he just seems more aware. Today, Jack (his younger brother) threw a Little People person across the room. Riley said "No hurt person. You okay person?"
He also understands now the concept of a red light meaning stop, a green light meaning go.
Subtle changes, but they are happening again!!
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