I know that there are many friends and family members who are eager to hear about our experience with our 30-day hyperbaric chamber rental. Let me start by saying that we are very, very thankful for the opportunity to rent the hyperbaric chamber (hereafter shortened to HBOT, for HyperBaric Oxygen Therapy), and for our generous families for making that possible.
When you start a new intervention that's supposed to help autism, everybody recommends that you only try one thing at a time, so you'll know if it works. While that does make sense, I also feel a sense of urgency to do whatever I can for Jude as soon as I can. So, I'm going to talk a little about all of the things we've been doing lately.
About the same time we started HBOT, I also started him back on liquid Super Nu Thera. SNT is a multivitamin that has extremely high doses of B-vitamins. Jude takes the one that has the added P-5-P and doesn't have any A or D vitamins in it, since he gets those in his cod liver oil. We saw positive changes in Jude when we tried SNT over the winter, but honestly, it's really gross tasting, he hates it, and I got weary of the daily battle, so I stopped it. After having him back on it for a few weeks, and missing a couple of days here and there for various reasons, I can definitively say that SNT makes the most notable difference in him. Days when he doesn't get it (and especially the second day), he is so much less aware of what's going on around him. Sometimes I give him an extra half-dose in the afternoons and the next day his cognition is even better.
He also started taking a Carlson Cod Liver Oil every day. This was a total accident. He has some kids' fish oil pill that he loves because they are strawberry flavored, and the CLO pills are for me. One day he grabbed one of my CLO pills and gobbled it right up. Since these have more good stuff in them than what he was taking, I happily let him keep taking one every day. We don't see a change in him with CLO, but it is good for everyone to take, so he would be getting it regardless.
About halfway through our HBOT time, we also started him on Fivelac, a second probiotic, as a one-two punch to the yeast overgrowth in his gut. We saw a very mild die-off reaction from the Fivelac (mostly in his diaper), and then some small improvements in his sociability, but it's hard to say which intervention really caused the improvements.
He takes a chewable CoQ10 every morning, and we've also seen a decline in his cognition when he doesn't take it. Not as dramatic as the SNT, but still noticeable. He's been taking CoQ10 for several months, long before we started the HBOT.
Before bed, he takes melatonin to help him get sleepy, two BioKult probiotics opened and mixed into a spoonful of honey, and some liquid Calcium & Magnesium. I take this Cal/Mag, too, since we're both dairy-free, and it's my favorite kind I've found. It tastes good and also includes some Vitamin D and green foods. Taking Cal/Mag before bed also helps you sleep better. That said, I notice that it helps me sleep, but not him.
Okay. Now that I've gone through everything else he's taking, it's time to discuss the HBOT. Word on the street (okay, the internet) is that most people see improvements around the 20th dive, and another bump in progress around the 30th dive. We didn't notice any differences around these milestones. What we did see were very small, gradual improvements in both his cognition and sociability over the course of the month.
Jude has liked to sing for a long time. He usually has one song in his head that he'll sing for a while (mostly in gibberish, but the tune is clear), and then move on to a different one. In the last couple of weeks, though, he has been pulling up lots of old songs and he's like a little radio station switching between songs! He sings:
This is the Day
School House Polka
I'll Fly Away
Barbara Manatee
and the VeggieTales Theme Song
The most exciting thing for me this month has been that he's started saying, "Mama!" He doesn't use it much, and sometimes he doesn't use it quite right, but he is saying it, and most of the time he does use it right! For probably 2 years now, I've been playing a game with him where I get right in his face (usually when we've been wrestling) and put his hands on his cheeks and say, "Jude," and then move them to my cheeks and say, "Mama." Then, we recently downloaded the free Knock Knock Family app, and customized it with some of our own pictures (my only gripe is that it comes with a dozen or so cartoon people, but you can only add 5 of your own). He loves it and one day he saw my picture and said, "Mama!" Granted, he also said it when he saw Daddy and Tio's pictures, but I'll take it. He's said it several more times, mostly just at my picture, and once even said, "Jude...Mama," while playing the hands-on-cheeks game (though not at the same time as doing the hands).
One improvement that is hard to really quantify is that he just seems more aware and like he understands us better. Sometimes he'll obey things we say that we didn't expect him to understand, or go to something we mention, or respond correctly (by his actions) to what we say. Granted, that is only sometimes. A lot of the time he's still screaming and pulling on us and not understanding the very loving things we are trying to do for him, but sometimes understanding is better than never, so we are encouraged.
When you start a new intervention that's supposed to help autism, everybody recommends that you only try one thing at a time, so you'll know if it works. While that does make sense, I also feel a sense of urgency to do whatever I can for Jude as soon as I can. So, I'm going to talk a little about all of the things we've been doing lately.
You have to wear an oxygen mask in there to get the benefits from it, which surprised us when it was delivered and set up. Jude hated the mask, so we did all of his sessions at nap and bedtime so I could slip it on once he was asleep. |
About the same time we started HBOT, I also started him back on liquid Super Nu Thera. SNT is a multivitamin that has extremely high doses of B-vitamins. Jude takes the one that has the added P-5-P and doesn't have any A or D vitamins in it, since he gets those in his cod liver oil. We saw positive changes in Jude when we tried SNT over the winter, but honestly, it's really gross tasting, he hates it, and I got weary of the daily battle, so I stopped it. After having him back on it for a few weeks, and missing a couple of days here and there for various reasons, I can definitively say that SNT makes the most notable difference in him. Days when he doesn't get it (and especially the second day), he is so much less aware of what's going on around him. Sometimes I give him an extra half-dose in the afternoons and the next day his cognition is even better.
He also started taking a Carlson Cod Liver Oil every day. This was a total accident. He has some kids' fish oil pill that he loves because they are strawberry flavored, and the CLO pills are for me. One day he grabbed one of my CLO pills and gobbled it right up. Since these have more good stuff in them than what he was taking, I happily let him keep taking one every day. We don't see a change in him with CLO, but it is good for everyone to take, so he would be getting it regardless.
About halfway through our HBOT time, we also started him on Fivelac, a second probiotic, as a one-two punch to the yeast overgrowth in his gut. We saw a very mild die-off reaction from the Fivelac (mostly in his diaper), and then some small improvements in his sociability, but it's hard to say which intervention really caused the improvements.
He takes a chewable CoQ10 every morning, and we've also seen a decline in his cognition when he doesn't take it. Not as dramatic as the SNT, but still noticeable. He's been taking CoQ10 for several months, long before we started the HBOT.
Before bed, he takes melatonin to help him get sleepy, two BioKult probiotics opened and mixed into a spoonful of honey, and some liquid Calcium & Magnesium. I take this Cal/Mag, too, since we're both dairy-free, and it's my favorite kind I've found. It tastes good and also includes some Vitamin D and green foods. Taking Cal/Mag before bed also helps you sleep better. That said, I notice that it helps me sleep, but not him.
It's fairly dimly lit in there, but not as dark as this phone pic makes it seem. Also, he isn't wearing the oxygen mask in this pic, which I can tell because he is awake. |
Okay. Now that I've gone through everything else he's taking, it's time to discuss the HBOT. Word on the street (okay, the internet) is that most people see improvements around the 20th dive, and another bump in progress around the 30th dive. We didn't notice any differences around these milestones. What we did see were very small, gradual improvements in both his cognition and sociability over the course of the month.
Jude has liked to sing for a long time. He usually has one song in his head that he'll sing for a while (mostly in gibberish, but the tune is clear), and then move on to a different one. In the last couple of weeks, though, he has been pulling up lots of old songs and he's like a little radio station switching between songs! He sings:
This is the Day
School House Polka
I'll Fly Away
Barbara Manatee
and the VeggieTales Theme Song
The most exciting thing for me this month has been that he's started saying, "Mama!" He doesn't use it much, and sometimes he doesn't use it quite right, but he is saying it, and most of the time he does use it right! For probably 2 years now, I've been playing a game with him where I get right in his face (usually when we've been wrestling) and put his hands on his cheeks and say, "Jude," and then move them to my cheeks and say, "Mama." Then, we recently downloaded the free Knock Knock Family app, and customized it with some of our own pictures (my only gripe is that it comes with a dozen or so cartoon people, but you can only add 5 of your own). He loves it and one day he saw my picture and said, "Mama!" Granted, he also said it when he saw Daddy and Tio's pictures, but I'll take it. He's said it several more times, mostly just at my picture, and once even said, "Jude...Mama," while playing the hands-on-cheeks game (though not at the same time as doing the hands).
One improvement that is hard to really quantify is that he just seems more aware and like he understands us better. Sometimes he'll obey things we say that we didn't expect him to understand, or go to something we mention, or respond correctly (by his actions) to what we say. Granted, that is only sometimes. A lot of the time he's still screaming and pulling on us and not understanding the very loving things we are trying to do for him, but sometimes understanding is better than never, so we are encouraged.
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