Tuesday, May 8, 2012
Life-Changing Hyperbaric Oxygen Treatment
It was 2006 and we were in the family minivan, driving up to NY from NC to see Dr. Bock again. I was nervous with anticipation. Dr. Bock was Marley’s DAN! Doctor and he had been right about everything so far. For over a year, he had been trying to convince me to try mild hyperbaric oxygen treatments for Marley. “She’s a perfect candidate”, he said. “She will benefit greatly because of both her brain bleed and her inflammation.” But I was hesitant…and mostly scared to try. I mean…this meant over an hour each session in a closed in space with changing altitudes that could hurt her ears. How would she handle it? And he wanted us to do it TWICE per day for a WEEK! Oh…and did I mention, it cost $175 per treatment! Yes---expensive and time consuming. But even after diet changes and supplementation, she still was not talking. She was not potty-trained. She was having meltdowns that scared us to death. And she was almost 4 years old! In my book, we didn’t have an option. We had to try. So we packed up our family of four, which included my husband and I and Marley and her new baby sister, age 6 months old and headed north.
Our young family stayed at my parent’s house about 1 ½ hours away from Dr. Bock’s office. We drove her back and forth from my parent’s house to the office twice per day for an entire week. Surprisingly, she did fine with the actual dives thanks to a portable DVD player with an unending supply of Sesame Street DVDs and daddy right in the chamber with her. I remember thinking this is craziness! Who in their right mind would drive this far…with two small children…to do a barely recognized therapy? It was exhausting for all of us. My parents tried their best to support us but they got to see first hand what living with autism really looks like. The ugliness at its worst. It wasn’t easy for them either.
On Friday afternoon, the last mHBOT session was done. The tenth dive was over. We were scheduled to drive home on Sunday. On Saturday morning, we were sitting on my mom's back porch and Marley was looking at a book…one of her favorite past-times. Then it happened. She said “Eh-O”. I put my coffee down. I stared at her. She said it again. “Eh-O”. Oh My God…She is trying to say Elmo! I praised her and drown her in kisses and she smiled at me. She smiled at me! She was proud of herself! We were elated. She had said her first word after the regression. And it was ELMO! I had waited so long to hear what her little voice would sound like. And there it was. Sweet as singing birds. Within a week after that, Marley was potty-trained. Yes…fully potty-trained.
All the way home we talked about how we had to get her more of these treatments…and fast! We found a place that was doing it in a city close by. We signed her up for 30 more sessions. Halfway through these sessions, I got a note from her preschool speech therapist. It read “I have never seen such remarkable progress, so quickly in a child before. What is going on? She is speaking in 2 word phrases now. She is much more engaged. Please let me know if anything has changed at home.” Oh yes, I thought! Something has definitely changed. I am getting my daughter back!
Hyperbaric treatments usually go in rounds of 40 dives. Then a month or two rest for the brain. Then resume treatments. In January 2007, we started round two with 40 more treatments. She was 4 years old. Her language was coming in slowly before but now it was coming in faster. She started using her words to communicate her needs and wants more often. She started “scripting” TV episodes. Her teachers reported her paying more attention to the things around her. The other kids, the computer, the art lessons. Then she started pretend play! She was speaking to Elmo on the phone saying hello and goodbye.
Now that she could talk, she could show me what she really could do. She was listening to her sesame street CD and she looked at me and said “5 more!” I didn’t know what she was talking about. Then the next song came on, and she looked at me and said “4 more”. I wondered if she was talking about the songs. I picked up the CD case to see if she was right. And she was. Indeed, there were 4 more songs left. She had done the subtraction to figure our how many more songs were left. Simply amazing.
By the end of session 2 at 80 dives, she was singing “the wheels on the bus” all by herself. And now that she could communicate, she was also telling me “tummy hurts….boo boo kiss”. This was opening up a whole new world for us.
At 100 dives, she was looking in the mirror pulling her hair up into pigtails which she had never tolerated before. I asked her if she wanted pigtails, she said, “yes!” and she wore them the entire day.
At 105 dives, she was back to preschool and I asked her what she did at school today. I always ask this question and had never gotten a response. This day she responded “Outside”. I was surprised. I said “Oh- you went outside today? What did you do outside?” She responded, “Sandbox, slide, tire swing.” Her clothes were full of blue paint. I said, “It looks like you did some painting too.” She smiled and said “blue”. Then paused and looked again at me and said “yellow”. This was my first ever conversation with my daughter.
At 115 dives, she started singing unprompted and without help. At 125 dives, we noticed she hadn’t had a meltdown in months. She started tolerating swinging on the tire swing with 2 other children.
At this point, we bought a chamber for our home because we saw the miracles it brought. We continued diving for years with amazing progress in socialization and language. My personal belief is that hyperbaric oxygen works wonders because it decreases the inflammation that is all too common in our kiddos with autism and it helps to detoxify the body. It also helps with making new connections in the brain at the same time. In my daughter, it likely also helped to repair the damage that was done by her brain bleed.
I will always look back at our “hyperbaric years” with a sense of awe because it was the intervention that brought my daughter back to me. And I will be forever grateful to Dr. Bock for insisting that we try it.