Admittedly and apologetically, I've been lax in posting an update on our son—the sweet inspiration for this blog. If you frequent Lexie's Kitchen, you may be familiar with his story. If you're new to it, you can visit the Hello page for a little background.
So, here goes.
Close to the Heart
It's odd. As much as I want to reach out and share the latest on our son, I find myself harboring it all within. I toss out tidbits to satisfy curiosity, but for the most part, I keep it close to my heart.
Is it because it's hard to explain?
Is it because the health and well-being of my children means everything to me?
Is it because I am admitting that my child isn't "typical?"
Is it because I just don't want to have to deal with people thinking I'm nuts?
Um, yep. Check all of the above.
Is this healthy? Probably not. Is this how I cope? I guess so.
Some Hard Years
Three summers ago, my husband and I first took note of our son's weak head control, his drifting eyes and those abnormally messy diapers. The years since have been the hardest of my life. I've cried buckets. I've been angry. I've felt helpless. The emotions have run the gamut.
These days, or at least today, I feel braver, stronger and thankful. I feel strong enough to share what I have guarded closely and thankful that the journey has instilled in our family a new depth of compassion, it has opened our minds and has changed our lives for the better. We are doing what is within our power to heal our little man and are leaving the rest to God.
As I write this post, I am sitting in the boys' room perched next to a rented portable Vitaeris Hyperbaric Chamber (HBOT). This is the latest therapy we are trying. A compressor hums away, keeping the chamber inflated at a steady 4.2 PSI. My husband and son are inside. Our son is hooked up to a nasal canula that is delivering a flow of oxygen.
We are renting this unit for $350 a week and will have it in our home for 10 weeks. We are aiming to complete 100 treatments—or "dives." Each dive lasting one hour, plus the time spent "diving down" and the time "coming back up."
What is Hyperbaric Oxygen Therapy (HBOT)?
Hyperbaric Oxygen Therapy (HBOT) is a painless procedure in which a person is exposed to increased pressure, thus allowing greater absorption of oxygen by body tissues and plasma. The increased pressure allows more oxygen to reach the cells within the body. The concept of Hyperbaric oxygenation has been around since the late 1600's but has only gained recognition in conventional medicine over the past 40 years. For a comprehensive overview, visit Genox, Inc.
While not new, HBOT is a recognized treatment for chronic degenerative health problems related to atherosclerosis, stroke, peripheral vascular disease, diabetic ulcers, wound healing, cerebral palsy, brain injury, multiple sclerosis and macular degeneration. Recently it has been entertained as a therapy for autism and mitochondrial dysfunction (MtD). Essentially, wherever blood flow and oxygen delivery to vital organs is reduced, function and healing can potentially be aided with HBOT.
Mitchondrial Dysfunction and Its Link to Autism
Before diving into why we have chosen HBOT as a therapy, let's talk a little about a very real link between autism and this thing called mitochondrial dysfunction.
The Centers for Disease Control estimates that 1 in 110 children falls on the autistic spectrum. Hats off to the activists, doctors and researchers seeking answers to the mystery.
One thing that is becoming evident is that autism is not a brain-generated disorder, but as Dr. Martha Herbert and others believe, autism is a whole body disorder. Furthermore, in the following video, my friend and Certified Nutrition Consultant, Julie Matthews, makes the point that there is likely no one cause nor one cure for autism because it is so complex. She goes on to say that there seem to be varieties of “autisms,” because not everybody has the same history or the same systems that are affected.
Our son exhibits some of the physiological symptoms we see on the spectrum but has never been diagnosed as being autistic. So if it isn't autism, if it isn't a syndrome, what is it? This very question has haunted me for three years.
Thankfully, with the help of Dr. Steven Rondeau of Wholeness Wellness Center in Ft. Collins, Colorado, we are piecing together the puzzle. Looking at our son's various diagnoses and tendencies in a holisitic manner, we see the signs of mitochondrial dysfunction (MtD). And THAT is what he does have in common with a certain percentage of autistic children.
To understand mitochondrial dysfunction, articles such as this one in Science Daily and this one by Alyssa Davi and this one by Dr. Mark Hyman are helpful. In a nutshell it has to do with energy production at the cellular level. Due to damage or stress, the mitochondria—the powerhouse of the cell—are not functioning optimally.
Mitochondria exist in nearly every cell of the human body, producing 90 percent of the energy the body needs to function. In a person with mitochondrial disease, the mitochondria are failing and cannot convert food and oxygen into life-sustaining energy. The parts of the body that need the most energy, such as the heart, brain, muscles, [GI system] and lungs are the most affected by mitochondrial disease. The affected individual may have strokes, seizures, gastro-intestinal problems (reflux, severe vomiting, constipation, diarrhea), swallowing difficulties, failure to thrive, blindness, deafness, heart and kidney problems, [poor muscle tone], muscle failure, heat/cold intolerance, diabetes, lactic acidosis, immune system problems and liver disease. An undiagnosed child may exhibit feeding problems, be unable to fight typical childhood infections or have repeated infections and fevers without a known origin. A red flag for mitochondrial disease occurs when a child has more than 3 organ systems with problems or when a “typical” disease exhibits atypical qualities. - The United Mitochondrial Disease Foundation
Dr. Dan Rossignol, a respected family practitioner in the field and parent to two autistic children, takes the definition of MtD one step further by explaining the difference between primary and secondary MtD. In this "Mitochondrial Dysfunction in Autism" presentation (it is a must watch!) Dr. Rossignol identifies Primary Mitochondrial Disease as typically referring to genetic defects leading to mitochondria dysfunction and Secondary Mitochondrial Disease (dysfunction) as referring to impaired functioning of mitochondria. Miles appears to be affected by the latter.
So what were the pieces of the puzzle that pointed us in the direction of mitochondrial dysfunction? Here are the diagnoses our son has been served over the past three years and observations that have been made:
- Hypotonia – Low tone. This contributed to some aspiration when he was younger. He walked at 20 months, began to run at 3 years and at 3-1/2 took his first two-inch jump off the floor.
- GERD - At 16 months, went on Prevacid for two months until I said "no more" and explored possible food allergies. Again, GERD is just a symptom of a deeper rooted issue.
- Delayed Myelination in one region of his brain. Myelination, basically, is the insulation around the nerves in the brain. And like a wire that has been stripped of insulation, messages get distorted and sparks fly.
- Gross/Speech/Fine Motor Delays – We continue speech, occupational and physical therapies. He is speaking in three-word sentences, his hands are still a little shaky, he can jump a distance of 5 inches. Cognitively he is "intact."
- Exotropia in both eyes (lazy eyes). Surgically corrected at 16 months by the phenomenal Dr. Robert A. King of Denver, Colorado.
- Chronic Sinus Infection – This was our second clue that food allergies (dairy formula) had come into play.
- Noisy Breathing - From very early on, I sensed something was not right with his nasal passages. You could nearly always hear the flow of air through his nose. It's hard to explain. Was it the structure of his sinus pathways or chronic inflammation? Sometimes it could be heard across the room (as with our first visit to see Dr. Rondeau) and at other times it was something you could hear only if you were right next to him. I've heard many an overweight person sound like him.
- Allergies – Wheat, dairy, egg, dog. We are completely gluten- and casein-free.
- Chronic Diarrhea – The medical term I was given by our original pediatrician was "toddlers diarrhea." He suffered with this from 14-32 months. It was putrid, yellow, sometimes green, undigested food, fruity and sulphuric! Just awful. Today, it is under control but certain foods and sugars set his gut off. Believe it or not, one of these diapers was the straw that broke the camel's back. After months and months of these diapers, and with tears falling from my eyes, I resolved to seeking help elsewhere. Should you seek help elsewhere? Well, if your child's pediatrician recommends the B.R.A.T. (bananas, rice, applesauce and toast) diet for his/her chronic (not acute) diarrhea, it's time.
- Yeast Overgrowth – Also known as candida albicans. Treated with diet and, so far, one round of anti-fungal medication. We will retest in a couple of months to see where we stand.
- Chromosomal Abnormality – 1p34.1—duplication of "34" on the short arm of the 1st chromosome. My husband tested positive for it as well. Is it clinically significant? We do not know.
- Low Iron
- Lack of Reflexes
- Elevated Toxin Levels – Porphyrin testing showed elevated levels of lead, mercury, pesticides and PCBs.
- Asthma – Always viral induced. Currently, the only medication he takes is Singulair. We will go through one more winter on it and then attempt to back off of it. Should he come down with a respiratory infection and begin wheezing or his oxygen saturation drop, we administer Albuterol as needed. A breathing child is a good thing and two hospitalizations were enough!
- Lower Oxygen Saturation – This has improved, but up until a year ago his daily average was 90-91 and would drop lower in his sleep. Today he's at 96-97. (oh and by the way, this is a very handy gadget to have on hand to monitor the asthmatics in your home).
- Energy – His energy level is definitely improving. A year ago he would tire after 15 minutes of motor room time. Not the norm for a 3 year old.
- Spaciness – He still has his moments (I used to think they were silent seizures, but I could always snap him out of them), but since removing gluten and casein the space-out moments are fewer and farther between.
- Balance - He is clumsy, he trips a lot and just plain loses his balance.
- Body Temperature Regulation - When it's hot, he gets really hot and when it's cold, he gets really cold. This is a common symptom of mitochondrial dysfunction.
- GI - We have seen great improvements in intestinal health. Recent urine tests showed that he still had some yeast overgrowth. We'll see if HBOT and diet work together to help clear this up.
- Speech - We are into week two of HBOT and Dr. Rondeau has asked us to watch for improvements in speech and "spontaneous conversation." I think we are definitely seeing more four, and even five, word sentences. His enunciation is lacking and only those close to him can understand him, but he is communicating! I am excited to see what week three, four and five bring.
- Awareness - Dr. Rondeau put it perfectly. Our happy-go-lucky little guy can be "blissfully unaware" at times. La-di-da! He'll mosey down the aisles of the grocery store, not look where he's going and run into people, taaaaake his time, you get the picture.
- Potty Training - Oh, now wouldn't that be the icing on the cake! : )
Could HBOT Be Our Answer?
When we first started reading up on mitochondrial dysfunction, everything seemed to click—it sounded like our guy. And then, a week later, when Dr. Rondeau confirmed the same suspicion with blood and urine tests we knew he was our man. Since seeing him for the first time in March 2011, we have addressed diet by going back on the Yeast-Free Diet (Anti-Candida Diet) and are administering a customized supplement "cocktail" consisting of:
Essential Fatty Acids
CoQ10; Includes Vitamin E, B3, B6, B12, B5
Note: Always consult your doctor for a customized supplement routine to suit your specific needs. What may be right for my child may not be right for your child.
And now we've come full-circle back to hyperbaric oxygen therapy. With diet and supplementation in order, Dr. Rondeau strongly encouraged the trial of HBOT with our son. Though extensive research on the effectiveness of HBOT to treat MtD and autism are forthcoming, my husband and I felt strongly about pursuing this path. In an abstract by Dr. Rossignol, HBOT has shown promise in the following areas as related to mitochondrial dysfunction:
Behaviors & Tendencies: May help improve repetitive, self-stimulatory and stereotypical "austistic" behaviors in certain individuals on the autism spectrum as well as improve impairments in communication, sensory perception and social interactions.
Detoxification: Upregulates enzymes that can help with detoxification problems specifically found in autistic children.
Dysbiosis: May improve dysbiosis which is common in autistic children.
Oxygenation of Blood and Tissue: Can compensate for decreased blood flow by increasing the oxygen content of plasma and body tissues when cerebral hypoperfusion conditions are present.
Immune Function: Has been reported to possess strong anti-inflammatory properties and has been shown to improve immune function.
Oxidative Stress: Reduction of oxidative stress through the upregulation of antioxidant enzymes.
Mitochondria Function and Production: May increase function and production of mitochondria and improve neurotransmitter abnormalities.
Porhyrin Production: Can aid in the impaired production of porhyrins in autistic children which might affect the production of heme.
Mobilization of Stem Cells: May aid in mobilization of stem cells from the bone marrow to the systemic circulation. Studies in humans have shown that stem cells can enter the brain and form new neurons, astrocytes and microglia.
Find Your Path
It is my hope that this blog and our story can help others find answers and healing. Perhaps our son sounds like your child? Whatever the case, take control, seek help. I really have enjoyed the following video, Why Current Thinking About Autism is Completely Wrong, by Dr. Mark Hyman. Dr. Hyman offers the same simplistic approach that Miles’ doctor is taking. And it all makes sense. If you're not sure how or where to start the healing process, watch this clip.
“Every child with behavior problems or autism is different. Each has to find their own
path with a trained doctor. But the gates are open and the wide road of healing is in
front of you. You simply have to take the first step.” –Dr. Mark Hyman
There is no doubt that we are hoping for a miracle with HBOT.
We may get one, we may not.
We've seen positive results with diet, supplementation and therapy (I will be eternally grateful to our son's therapists Erin, Heather, Lindsay, Janet, Tiffany and Sherri). Perhaps with HBOT we'll see even greater progress.
I take my job as mom very seriously and am committed to doing all I can for our little man. I feel he is at a stage of development where great things can happen. So far we are progressing and every part of my being hopes and prays that he will continue to do so. The unknown is never easy, but hope and complete faith in God's great plan, gets me through.
Now Let's Go For a Dive
On a fun note. We've been talking about diving and it just so happens that my sister is an avid diver—her livelihood revolves around it. Jill is a PADI Certified Dive Instructor on the Island of Lanai. As my kiddo and I "dive" down in our HBOT, we'll be living vicariously through aunty Jill. If you're ever on Lanai (or Maui) and want to scuba, call Trilogy, ask for Jill and tell them that Lexie sent you. Perhaps this final video will send you on your way to book a flight to paradise. Sounds good to me!
Thanks to each and every one who supports this blog. I appreciate you so much! Your kind words and thoughts mean the world to me.
July 9, 2011
After 20th Dive
We spent the day out and about and my husband and I kept commenting on how many words were coming out of our little man's mouth. At one point hubby said "are we sure we want him talking " : ) ha ha, but seriously, he would mimic everything that we would say, he'd comment on what he saw. I think this is working!
July 25, 2011
After 40th Dive
We have completed 40 dives in the HBOT—four weeks of treatment. Today he walked (and even jogged a some) the farthest he’s ever walked without tiring out (close to 1/2 mile). And yesterday we went on a picnic and he scrambled (mind you slowly and carefully) up and over some pretty big boulders. My husband and I have had many moments in the last couple weeks where we look at each other and raise our eyebrows and say “did you see that?” or “did you hear him say that?” We’ve asked ourselves, if it’s just natural progress or is it the oxygen therapy? Well, we’ve concluded that the therapy is doing something. The improvements in the number of words and syllables he can string together and smoother gross motor movements we’ve seen in four weeks time is more than a growth spurt or natural progress. My husband was talking with his mom (a teacher for many years) and she tends to agree. The other morning little champ came in and crawled into bed with me. We were “talking” and he said; “so cute” to which I replied “who?” and he said “you mom!” Talk about melt my heart … how awesome is that! His communicating his wants and needs in words has greatly improved in the last four weeks. The enunciation is definitely something he will need to work on, but if we take a sentence slowly, word-by-word, he can say most of the words clearly and concisely.
August 25, 2011
After 83rd Dive
The observations we have made since the last update include:
Bowel movements: Soft to formed. Every day or every other day.
Energy: Great. Naps 3 times a week. Up at 7:30, to bed at 8:30.
Gross Motor: He has started to skip or gallop. A lot more steady on his feet. Is running faster and faster. Still flails arms a bit and has a very lean-forward gait, but the flailing is much less than it was even a month ago.
Fine Motor: He really likes playing games on the i-Touch and it really allows me to gauge the "shake" in his hands. It is very slight now ... not at all what it was 3 months ago.
Speech: He is really trying to sing! Love it! Enunciation still lacks, so we will focus on that this year with preschool therapy (starts Monday). Last week we sat down to play a game and he clearly said '"you be red, I be blue." Yesterday he counted houses as we drove to pick up big brother at school. He is telling knock kncok jokes: "knock knock" who's there, banana, banana who, banana peel!" We all laugh ... he thinks he's being so funny : ) The strides we've made in 10 weeks are hard to just take as "growth." I really really think that HBOT has played a part.
Illness: Last week we were held up a few days due to a cold/flu bit that the two boys and I got. He recovered the quickest ... now that's a first!! His brother is still blowing snot? Has his immune system gotten stronger? The coming months will be the test.
Potty Training: With the school year starting, I wake him in the morning and send him straight to the potty. He will relieve himself. I think that part of the problem here is laziness. Or just not making the immediate connection between the urge and the need to get to a bathroom. We will keep working ...