A Ventography!

Just two moms letting off some steam

HYPERBARIC OXYGEN THERAPY – ANNIE’S SECOND REGRESSION

20 Comments

ANNIE’S STORY – PART SEVEN OF TWELVE

After trying and failing at several Defeat Autism Now (DAN!) interventions, I thought Hyperbaric Oxygen Therapy (HBOT) was going to be our saving grace. My husband and I gambled big… we drained our savings account and bought a home unit.

We were told by our DAN! doctor to go in the chamber 60 minutes a day, every day, for 2 months. At this time, Annie spent a lot of her days running aimlessly around our house. In addition, she flipped out if she was confined in any way. So, I wasn’t thinking she would enjoy hopping in our coffin sized HBOT chamber very much.

I admit, getting Annie in the chamber the first time wasn’t pleasant. However, after we completed the first session and she saw that it didn’t hurt and we weren’t going to be living in there forever, Annie loved it. In fact, she would crawl in the chamber multiple times a day. This was her way of telling me she wanted to do a session. I thought, “We’re on to something, this must feel good to her and it must be helping.”

We completed our 60 dives over 2 months. Then, we had a check in with our doctor to discuss results and do some tests to make sure Annie was healthy enough to continue treatments. I told the doctor that Annie did not have any increase in expressive (spoken) language as we were hoping for. However, she did make a big leap in receptive language. In other words, suddenly she could understand what we were saying to her. Prior to hyperbaric, Annie could only follow 1 or 2 step commands. But after our 60 dives, she could follow complex, multi-step commands. In addition, she seemed to be sleeping a little better. I was very encouraged.

After taking a month rest from hyperbaric, the doctor advised me to increase to 2 sessions a day (120 minutes a day). I truly believed that this was it – Annie’s recovery was on the horizon. But that was not the case.

After a few weeks of the increased treatments, “the wheels seemed to be coming off the tracks.” Annie’s bowel movements got worse. The diarrhea was back. The dark circles under her eyes got worse. Her stimmy-ness got worse. And most disappointing, her behavior got significantly worse. She went back to having several tantrums every day and became very aggressive. We were all “walking on eggshells” – never knowing why or when she was going to explode. It is also worth noting that Annie no longer asked to get in the chamber. In fact, she fought me about getting in. It became a daily battle.

One day, Leah and Brody came over right after we had finished a session. Leah told me that Annie’s eyes looked weird to her. Annie was staring off into space a lot (something she had never done prior to hyperbaric). Leah point-blank told me that she thought Annie was having mini-seizures and that she didn’t think we should be doing hyperbaric anymore.

I saw that Annie was regressing. I saw that my daughter did not want to do the treatments any more. I heard my closest friend tell me not to do the treatments anymore. And yet, I kept on going.  It wasn’t because we had spent our entire savings. The reason I kept on going was because I had believed, with my whole heart, that hyperbaric was going to be the intervention to finally heal Annie. I didn’t know what else I could try if I gave up on hyperbaric. To me, giving up on hyperbaric felt like giving up on Annie.

This is one of my biggest regrets now. I wish I had listened to the signals Annie was giving me a lot earlier. Just like she knew it was good for her in the beginning, she knew it was too much for her when we increased the number of dives. Our children have extraordinary inner wisdom and I wish that I would have paid attention, instead of clinging to my desperate hope.

We didn’t finish our last week of “double dives”. I had finally come to my senses. We stopped hyperbaric all together. Annie’s behavior got better, but it still wasn’t great. I was dealing with at least 1 tantrum per day instead of multiple tantrums every day. Annie did not lose her gains in receptive language, but her health was clearly worse as a result of too much hyperbaric. Annie was hardly sleeping at all.

I have come to believe that the reason everything went wrong when we increased the number of dives was because Annie’s yeast got worse and she experienced too much detox, too fast.

This was a real wake up call for me. I was mad at myself for hurting my daughter. I had no idea what my “next move” was going to be. I was really “down in the dumps.”

To be continued…

For Parts 1 – 6 of Annie’s Story go to https://ventography.wordpress.com/category/annies-story/

For more information on Hyperbaric Oxygen Therapy go to http://www.healthinducedautism.com/hyperbaric-oxygen-therapy-hbot.html

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Author: A Ventography!

A Ventography is about: 1. Encouraging and empathizing with other parents on the autism spectrum. 2. Recycling and simplifying information on the latest autism news and health and diet tips. 3. Asking thought provoking questions designed to make us rethink what we've been told about autism. 4. Helping connect the dots that show, in some cases, autism is more than a brain disorder. 5. Challenging parents to rethink what they've been told, refuse the status quo, and escape the whirlwind of confusion.

20 thoughts on “HYPERBARIC OXYGEN THERAPY – ANNIE’S SECOND REGRESSION

  1. Hello Molly,

    I am father of a 5 year old girl with ASD in India. I am considering HBOT for my daughter and seek your advice basis how you now see HBOT impacted Annie several years hence as she has so dramatically improved. Your response will be much appreciated as here in India we have very limited support for dealing with autism and not even paediatricians are able to comment on some of these topics.

    Regards,
    Rahul

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    • Hello Rahul,

      Great question… Now that it has been several years since Annie has done hyperbaric and I’ve had time to reflect, I am still glad that I did it. I regret purchasing a chamber as I don’t feel we used it long enough to recoup our investment. I also regret increasing the amount of time we spent in the chamber. When our doctor advised us to go in the hyperbaric twice a day for an hour each session, I feel that was too much detox too fast for Annie. However, when I only took her in the chamber for one hour per day, I saw beneficial changes. Bottom line – my advice is SLOW AND STEADY. Don’t over do it. You can have too much of a good thing. Also, pay attention to the signals your child is giving you. If she doesn’t want to go in the chamber, I suggest following her lead. Best of luck. Let me know what you decide to do. -Molly

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    • Hello Molly,

      Thank you so much for responding, really appreciate it. I do intend to start with mild HBOT for Renae soon, I just hope it does not hurt her ears too much. Do you know how it feels on the ears inside the chamber? Renae has been on an aeroplane earlier and did not experience much difficulty but I don’t know what 1.3ATA inside the chamber is like on the ears.

      Secondly, Renae is also seeing a Handle screener who recommended Craniosacral therapy which again is very expensive here with almost $40 per session, so I was wondering if you could please share how it helped Annie so that we know what kind of changes to expect and if it does not seem to be going as scripted then to call off.

      Many thanks and best regards,
      Rahul

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    • Hello Rahul-

      That’s exciting that you are starting HBOT for Renae. I pray it is everything you are hoping for. As I said in my posts, I do feel HBOT gave Annie a big jump in her receptive language.

      We did 1.3 ATA as well and it did not bother my ears at all and it didn’t seem to bother Annie’s. She never pulled on them or expressed pain in any way. It felt to me just like it does when you’re ascending or descending in an airplane. If you yawn or swallow a few times, your ears pop and everything feels normal again. Our doctor warned us not to go in the chamber if Annie had a cold though because he said the fluid build-up could really hurt her ears.

      I feel craniosacral therapy got rid of Annie’s sensory issues and enabled her to have the fine motor skills needed to write and draw. What I noticed right away (the first session) was that she seemed like she could relax (like she wasn’t in pain) for the first time ever.

      Annie received intensive craniosacral – 2 therapists working on her for 4 hours a day for five days in a row. For the first week after the session, Annie often seemed more hyper and “stimmy”. The therapists said this was her way of coping with her body adjusting to the changes they made in her nervous system. By the 2nd week after our treatments, I would begin seeing positive changes (less covering her ears, less toe walking, less sensitivity to clothing/shoes, ability to write for the first time, liking to color/draw for the first time, etc.).

      I hope this helps and feel free to ask any other questions as you go on this journey. I really do pray the best for you and Renae!

      Molly

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    • Hi Molly,

      Hope you are doing well.

      We have just concluded about 35 HBOT sessions for Renae and I wanted to share that she is seeing an improvement in her receptive language as well. I was so confused about HBOT as there was so much contradiction on the net and it was your feedback as a parent that helped us finally decide. I just hope that her gains are permanent.

      We are now evaluating accupuncture as well as stem cell therapy, will be helpful if you could share any feedback you may have. Please do share anything you may have come across to help our kids get conversational.

      Hope Annie is doing well too, is she conversational yet?

      Best regards, Rahul

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    • Hi Rahul-

      I am so glad to hear that HBOT is going well for Renae! I pray her gains are permanent as well. That is so funny that you bring up acupuncture. That’s what I am trying for Annie right now. We tried laser acupuncture and didn’t see anything – positive or negative. Now we are trying real acupuncture… with the needles! I never thought Annie would cooperate, but she did! Annie is having a lot of sleep and nightmare issues that I am hoping acupuncture will help. I will let you know. Right now it is too early for me to say. To answer your other question, Annie is conversational and I thank God every day for that. Please keep in touch. –Molly

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  2. I am experiencing a similar reaction with my son at the moment. Could you please advise me what you did to help your daughter get back on track? My son became completely unhinged, regressed so much doing HBOT we quit. I just want to go back to how it was before we started 😦

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    • I am so sorry that it took me this long to get back to you. Leah and I took time off from blogging this summer since the children were out of school (it was impossible to get anything done :). You may have already figured out a game plan, but I thought I would respond anyway just in case I can still be of help. First of all, I am so sorry your son regressed. I KNOW how painful that is. When Annie regressed from HBOT, 2 weeks after we quit, she seemed to level off a little on her own. Her bowel issues, dark circles, and stimming got better. But she was still having rages and she was not sleeping at all so my life was MISERABLE. Shortly after that time, I realized I needed to try a new direction. I switched from doing the DAN! protocol to trying what the Homeopathy Center of Houston had to say (they work with people nationwide by phone). Here is their website if you’re interested http://www.homeopathyhouston.com/. But if that doesn’t sound appealing, I think what Annie needed after hyperbaric was to clear out all the toxins that had accumulated as a result of the dives (i.e., hyperbaric caused her to detox too fast and therefore all the toxins were trapped in her body). I needed to support the major organs involved in detox (liver, kidneys, lymphatic system) and help them rid all the toxins that had built up and were making Annie go crazy. You could do this through supplements (milk thistle for liver, I am not sure for the other organs) or you could try the “PEKANA Basic Detox & Drainage Kit” (here’s a link to a website where you could order it but shop around in case you find a better price…http://www.forresthealth.com/big-three-detoxification-drainage-kit.html?gclid=CNGDiajpkrICFQ-R7Qod-wIAtA). I believe that once I helped her major organs drain the toxins, that’s when her rages stopped. It took her even longer to start sleeping but she has never been a good sleeper. Even now, we go through periods of sleep issues. I hope this helps. I am not sure what issues your son has/had. But please write me back if you have follow up questions. Thanks for commenting! Molly

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    • Thank you for your reply! I appreciate it. We are 5 weeks post HBOT and he is doing much better! We are still struggling with sleep issues right now too and him smacking himself in the face :/ He never hit himself before hbot. Thank you for the information, it makes a lot of sense. Hope you enjoyed your summer!

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    • I am so happy to hear things are better now. My daughter is in a bad sleep phase again now too. Never ending battle. Well I wish you the best of luck. -Molly

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  3. Molly,

    Some questions.

    1. At what pressure were Annie’s first 60 treatments?
    2. Did Annie take any kind of break between the first 60 treatments and the second 120 treatments? Did you wait a couple of months or so before starting the second 120?
    3. What pressure for the next 120, which was actually around what, 105 treatments?
    4. Was she also receiving oxygen while in the chamber?
    5. What brand hyperbaric chamber are/were you using?

    There is evidence that children often experience the type of response Annie experienced if they don’t receive any kind of break. The typical protocol for brain-injury is 40 treatments 1x/day. Then they take a break for a couple of months or so before starting another series of 40.

    Annie’s response sounds typical for a child that needed a break from hyperbaric oxygen. If you’re not supplementing with oxygen in the chamber, and she’s reacting to just hyperbaric therapy, this would be the first time I’ve heard of this type response, but I’m not surprised. Even hyperbaric therapy at 1.3 ATA increases oxygen intake by 50%.

    The good news is Annie’s “regression” is probably not permanent. I may possibly have some encouraging advice for you depending on what your answers are to the questions above.

    Something else, and this is critical for you. You have nothing to feel guilty about. The politics of medicine are forcing you to become Annie’s physician. You’re doing the best you can with the information you have. You didn’t ask for any of this. You’ve done nothing wrong. You’re learning too. Annie still loves you and always will.

    I’ve helped dozens of families access HBOT through the legal process in maybe 20 states. HBOT efficacy is well-proven, and still the pediatric neurology community ignores it–as do the insurance companies and multiple government agencies. So you’re forced to physician your own daughter.

    Let go of the guilt. You’re not in error.

    Instead, you are one incredible Mom.

    Send me some answers.

    David Freels
    MedicaidforHBOT.com

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    • Hi David-

      I checked out your site and see that you know a lot about HBOT and it looks like it worked well for your son (I am happy for you). Annie’s first 60 treatments were at 1.3 with 2 compressors for 100% oxygen. We have a oxyhealth soft chamber unit. We saw some good things from our first 60 dives. We took a month off before starting our next round of treatments and our Dr. did lab tests to ensure yeast and metals weren’t too high before beginning double dives. We only did double dives for 2 weeks before I quit. Our double dives were in same oxyhealth 1.3 unit, with 2 compressors at 100% oxygen. You are right that Annie’s regression wasn’t permanent. This incident happened 2 years ago when she was five. Since stopping HBOT 2 years ago, I went a totally different direction with Annie (craniosacral, homeopathy, etc.) and she is actually doing better than ever. For the first time ever, I feel recovery may be a reality for us a some point. I don’t think I will go back to HBOT any time soon just because what we’re doing is working so well for us (I am too afraid to “rock the boat). I have many friends who have used HBOT with great success. It sounds like you’re a wealth of information and I will direct them to your site. Thanks so much for your kind words about not feeling guilty about decisions I’ve made for my daughter. It sounds like you’re an incredible dad as well. Thanks so much for reading. -Molly

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  4. So sorry to hear of this setback. Did you do mild hyperbarics…if so you were mislead. Minimum theraputic treatment for hyperbaric treatment is 1.5 atmospheres breathing 100 % oxygen. This should be done in coordination with dietary restrictions to heal the gut and chelation to remove the heavy metals. Please email me if you would like to discuss this. kentm@o2clinics.com

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    • Thanks so much. For now, I am going a different direction with Annie and it is going pretty well. But who knows… I may need to take you up on your generous offer in the future. -Molly

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  5. There is a small piece of me, deep down inside, deeper than most individuals are willing to go, that wonders what did I do.
    Was it the glass of wine at dinner on occassion. A Ceasar? Two much tylenol? The injections into my rib cage for the splintered rib that was separating? Was it a damaged egg, from all the X-Rays and Mammograns for the lump in my breast prior to the pregnancy? Was it because I got mad at him and shook him, begging him to let me sleep? Was it because my two kids are 14 months apart and my body didn’t heal in time? Was it because this pregnancy I forgot to take the Folic Acid? Was it because I was in the depths of a huge depression and didn’t want to be pregnant?
    The rawness of it all is so painful, but occassionally I either go there or I am taken there and I might as well have 3rd degree burns over my entire body (no offense to those that have) because the pain is so immense and there is no medication in my household but my son’s smile that can eliminate that pain.

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    • This makes our hearts sink into our stomachs. We know your pain and guilt. We too have our list of things we question and feel guilty about. Leah put her list on our website, http://www.healthinducedautism.com/brodys-story-part-1.html, if you are interested. We can tell from your blog that you don’t let the guilt and “what-ifs” swallow you up too often. But we appreciate so much that you voiced what many moms (including us) feel sometimes but are often too timid to express. You are brave and you are a fighter. We have so much respect for that. -L&M

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  6. Ugh. One of the hardest things about being an autism mom is the guilt. If only we’d done more of this or less of that. Please have compassion for yourself. You did the best you could for where you were, and it was all done out of love and hope. Blessings!

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    • Thank you. When I can think rationally, I know it is not smart to wallow in my guilt. But I have “those days” when that’s all I can do. Thank you for seeing that anything I’ve done (or not done) has all been with good intentions. -Molly

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  7. So sorry. You are trying so hard to do right by your daughter. I feel for you. Poor sweetie. I know what it’s like to try different things. I agree that too much detox too fast can cause symptoms. I hope that you find some peace and comfort soon, through all of this.

    aspergersgirls.wordpress.com

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  8. This post breaks my heart. I am so sorry that you experienced this set back. I think moms of Autistic kids are some of the smartest and wisest in the world because we’ve lived through things like this. Looking forward to reading more! –Joy

    peacelovepaleo.wordpress.com

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