Post HBOT - What We Learned

We said goodbye to 'subbie' - aka the HBOT chamber on Thursday June 30th. It was with a strange mix of emotions that we finished the HBOT treatments with Aleks. We went from having to argue with her and bribe her into getting into the chamber to having her ask to go in. I actually found that I looked forward to our alone time in the chamber together. We would crawl in, zip it up and disappear into our own little world for an hour. Aleks fondly named the chamber 'subbie' as in submarine and was shouting "good-bye subbie" as it was loaded up and taken away the last day.

Was it worth it? Have we seen any changes? I think as the parents who are with Aleks every day that is a hard question to answer. I will say that both Bill and I feel like we have seen some really positive changes post HBOT. I feel like during HBOT treatments her words were easier for her to find and that her emotions were more even keel. It also seemed like making transitions were easier and less dramatic for her. Since we were gone last week it will be interesting to see how this week goes for her. My hope is that the changes we saw with HBOT are still there this week. It wouldn't be fair to her to say whether or not we're still seeing progress since she was out of her regular routine last week and usually reacts more emotional to change. My hope is that the progress is still in tact and that this week will be another one of moving forward towards healing.

*BTW, I think we did about 20-23 dives @ an average of 60 minutes day.

Blessings xo Melissa

HBOT - 10th+ Dive

It's 8:25pm on Monday night and I'm doing but I bet no one else is doing right now. Anyone else in a HBOT chamber with their child?? I'm laying here with my laptop while Aleks is also using a laptop and watching a movie. We're 30 minutes in and I have to say that I now look forward to our time in here. It's strange, but the quiet, hum of the compressor and oxygen concentrator, plus Sting in my headphones is actually quite calming. The thing I've been surprised about this HBOT chamber is the time commitment it takes. When we got it for the month we didn't realize that both of us would have to be here to go for a dive to happen. With Aleks so young and a little frightened of going in by herself it takes two people to operate. Someone has to be on the outside to get the outside zipper and to monitor the pressure and take us in and bring us out of a dive. We've actually timed it so we could do the pressure valve by ourselves, but the zipper is still the biggest issue. Anyway, it's a rare sunny, beautiful day and we decided to let her play after camp vs. doing the chamber before dinner. That's how it got to be 8:30 now and we're only halfway done with tonight's dive. What I'm thankful for is that despite the odd time and the fact that I have to get up by 4am, we're still in here and making a go of it.

I've been asked what changes are we seeing. Honestly, it's hard to say but I feel like we've seen an increase in language but also an emotional increase as well. Aleks emotions seem to be heightened after a dive. She cries easier, but if we can get some fish oil in shortly after a dive she is better. I'm hoping that from what I know the emotions coming out are all part of the healing going on inside. Night! xo

HBOT - Day 1...

The HBOT - Hyperbaric Oxygen Therapy chamber is up and in our home. The chamber, concentrator and compressor are the three parts that deliver oxygen in a pressurized chamber. To better understand HBOT and why we're using it to help heal Aleks, here is a link to the Holland Center which is located here in MN. They are a FANTASTIC organization and a great place to start if you're new on the autism journey. They do a great job explaining HBOT and what it can do for our children.

Day 1 - June 6th - 5pm - Time in fully pressurized chamber- 45 min.

Post Dive Changes: Mood seemed better post dive/More talkative?

This is truly our first full session today using the HBOT chamber. The first time we actually tried the chamber we underestimated the pressure it puts on the ears. This scared Aleks and sent her into a panic. This time, we were prepared for the ear pressure and also for the panic of being in such a small space and the noise of the chamber.

I think both Bill and I also underestimated how difficult it would be to get our daughter into the HBOT unit. The chamber is seven feet long and once inflated just tall enough for her to sit up in and tall enough for me to sit up in, if I'm bent over. It's meant for laying down and is big enough for both of us to stretch out in. Aleks didn't mind crawling in with her blankie, Pillow pet and iPad, but she did mind when we zipped it up and started the concentrator and then the compressor. You could actually see the panic in her eyes. I saw it firsthand, because I was in there with her. In fact, one of us will be in there with her every single time we go in for a 'dive'.

The chamber pressurizes slowly and effects your ears a lot like flying. I would say it's a little more intense than flying but once it's fully pressurized you don't feel the ear pressure anymore. Today when we went in for our 'dive' I could see Aleks start to panic(pounding and screaming to let her out) and complain that the chamber was "freaking her out". We had given Aleks her first half stick of gum for her ears and also taken some juice in there for her so that she could swallow and allow her ears to pressurize. It wasn't easy keeping her calm and in there but after the first 10 minutes she did calm down and was able to watch a movie on the iPad. We actually got 45 minutes out of her before she had to go to the bathroom. All in all, success!

From here on out I'm going to update how long we went in and any changes we see with her behavior, speech, sleep or whatever the HBOT effects. Both Bill and I did notice that after the chamber she was in a great mood and seemed more talkative.

xo

Melissa

We're Going HBOT Baby!

It's not that I am so smart, it's that I stay with problems longer. ~Albert Einstein

If you're looking at this picture and asking yourself what in the world is that, say hello to HBOT. HBOT is otherwise known as Hyperbaric Oxygen Therapy. It's a therapy that delivers pure oxygen in a pressurized chamber. The HBOT was originally used to treat Olympic athletes who had injuries. It was found that the pure oxygen helped their bodies heal faster. Then it was found that HBOT also worked on stroke victims to help their brains heal...then the autism community found out about it. Like most biomedical treatments for autism, HBOT is not paid for by insurance and of course isn't cheap. What we do know is that thousands of parents swear that their children's symptoms, language and behavior changed for the better after doing a series of 'dives' in a HBOT chamber. Dives are the time that the child/parent go into the HBOT chamber and stays in their breathing pure oxygen.

For us, it hasn't seemed like the right time until now to try out HBOT. There were issues with other therapies, school and finding the time to travel back and forth every day for treatments. We decided to try something new this summer. With the help and advice from our DAN doctor, Dr. Spore, we are renting an HBOT chamber for a month this summer. We'll be able to do the dives at home. What finally made us decide to try it was the "what do we have to lose" idea. Money? As my girlfriend Julie said, "Money, you can always make more." True, so what's to lose from trying HBOT? We decided that now is the right time for us to try this. I'll be giving updates once we start on what we're seeing, what's it's like and whether we are seeing progress. HBOT helps increase blood flow to the brain and we know from research that the brain is able to heal itself. To me, this is really exciting and a natural way to help Aleks body and brain heal. We'll keep you posted! If you have any advice or questions, please let me know. I'll be more than happy to answer them in my future blogs.

Faith, Hope & HEALING ~ xo Melissa

To ABA or HBOT or Not?

Are we missing it by not having Aleks in ABA therapy?  Should we also be trying HBOT?  

It has been several months since we found out that Aleks has autism.  We jumped into the diet and supplements and are thrilled with the results!  We also dove into working with our DAN! doctor, ST and OT plus have Aleks in a special preschool with an amazing team of teachers. What I am wondering now, is are we doing enough?  Aleks will be 4 in a month and we are questioning ABA and HBOT because it keeps coming up.  I believe in God's bread crumbs and am just wondering if these are part of our crumbs to follow and what we should be doing about it.  

I talked to one former ABA teacher who said that it's not for everyone and who was not a fan of the 40 hours a week.  Honestly, I am not willing to cancel Aleks' school, OT & ST to get her into the 40 hours of ABA that some say are recommended.  I am willing to do half of that in addition to everything else, but my gut says for her the 40 hours isn't right.  I've been surprised at the few outspoken parents who tell me that it's not worth it if I don't do the 40 hours and that I am cheating her by not doing ABA.   We honestly couldn't have handled it before now.  Even now and with TEFRA here in MN the cost for us will be outrageous.  We are willing to do all we can for her, but is ABA the right fit?  How do we know if it's right for her?  Also, we have the opportunity to try HBOT.  Our DAN! doctor in Stillwater is one of the few around here who offers the oxygen chamber.  We are still researching HBOT at this time to try and figure it out as well.

In the short time that we've been in this journey I feel like we've come a long way.  The problem is that it is a journey and we have to much further to go.  If you have any suggestions, thoughts or just insight please post a comment and let me know.  Thank you!

Blessings-

xo

Melissa