Welcome to Lexie's Kitchen & Living. I'm glad you stopped by and hope you enjoy the five years of recipes and ramblings collected here.

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Tuesday
Jul052011

Diving to the Depths in Search of Healing 

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.

Twelve treatments down and I am impressed with how cooperative little man is. The i-Pod, DVD player and books get us through each session.

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:

DIAGNOSES

  • 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).

OBSERVATIONS

  • 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! : )

Big brother looks on.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: 

Probiotics
Essential Fatty Acids
Acetyl L-Carnitine
CoQ10; Includes Vitamin E, B3, B6, B12, B5
Digestive Enzymes
Vitamin C
Vitamin E

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.

Then there are the testimonials, the real life stories of healing like Casey's Part One and Part Two and this one that keep me encouraged:

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

Hope is a Beautiful Thing

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.

xoLexie

 

UPDATE #1
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!

UPDATE #2
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.

UPDATE #3
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 ...

Reader Comments (24)

Oh, Lexie, what an in-depth (no pun intended) and powerful post! Thank you so much for sharing this info. I know it will help many. I especially appreciate your guidance to readers to see another doctor if they are getting the BRAT diet recommendation as a solution for diarrhea. I'm truly hoping that the fact that your son is handling the HBOT time so well means that he senses it's helping him. The progress you've noted sounds good! I am continuing to send all wonderful, healing thoughts your way, my dear, and will share this post whenever I can. You are an amazing mom and I admire you so!

Also, didn't know your sister is a PADI dive instructor. Mr. GFE, PADI trained years ago and an avid diver, will be interested. Must check her and her dive shop out. ;-)

xo,
Shirley

July 5, 2011 | Unregistered CommenterShirley @ gfe

Wow, Lexie! I'm overwhelmed, and that's just reading your post. I can.not.imagine what you must feel. Well, actually, I get a shadow of it from your post - very powerful! I am so thankful for your faith. It makes all the difference. I will be praying for you, your son and your family. God bless.

July 5, 2011 | Unregistered CommenterJune Scott

Lexie it is so amazing that you have shared all of this! I don't think you even realize how many others you will probably help. Your son is so lucky to have a mom like you!!

July 5, 2011 | Unregistered CommenterAlisa Fleming

Lexie, what an amazing post! I've also heard of HBOT for candida. . . haven't managed to try it, though. And I loved what you said about autism being a "whole body" issue--I think, really, that every disorder or condition is as well. . . we just have to find the unique way to rebalance, for each one of us. (On a side note, I cannot believe a doctor prescribed Prevacid for a baby!! Really says a lot about where medicine is in 2011. . . ). Thanks for this. I have no doubt it will help loads of people! :)

July 5, 2011 | Unregistered CommenterRicki

Alexa,
This truly made me pause and realize just how amazing you and your family are. Two lines in and I was crying my eyes out, your truly spoke from the heart. I know this site will help someone in a similar situation, and I hope this treatment will help your boy..

Love love love,
Hannah

July 5, 2011 | Unregistered CommenterNeighbor :)

Lexie,

You are amazing in so many ways. Thank you for sharing your story. I read every word and I'm so uplifted by your loving spirit. Wow, what a special mom you are. Please keep us posted on your son's progress. And take care of yourself in the midst of all this. Sending lots of love your way!

Melissa
xo

July 5, 2011 | Unregistered Commenterglutenfreeforgood

Lexie,
Thank you so much for sharing your difficult journey with us. You are amazing and a true inspiration to the rest of us out here who are going through our own difficulties in helping our children. May God take your hand and guide you in the right direction to help your little angel. I can't wait to hear how he is doing...please keep us posted.
Tracy

July 5, 2011 | Unregistered CommenterTracy

Lex, you are an incredible and totally inspirational woman. There is nothing more that I want to do right now than just give you the biggest hug ever. This post is so poignant and powerful and it makes me so amazingly proud of absolutely everything you are doing for your son. There is no doubt in my mind that will follow the path to help him heal. Thank you for updating us and for sharing the journey you have been traveling with your son. I feel honored and blessed to call you my friend.
xoxoxoxoxoxoxo
k

First, I have to say that your sharing is a truly powerful expression of your love and dedication. I too have done whatever I had to for my child's diet and health. For us it was something inside me that said something is not right. It was a behavioural, sleep, digestion issue that started it all. I know from my own experience that there was no other alternative. People thought I was crazy. They thought the restrictive diet was depriving him. Dairy and sugar sensitivities were the primary issues as well as yeast overgrowth and gluten. It has been 4 years now and we are less restrictive but avoid and limit. It is interesting to me how people assume everyone can tolerate the all foods. What I have since thought is maybe others cannot tolerate the same foods, they may not have awakened to the realization yet. I grew up in a house with a highly allergic father. I think it trained me for my future. I hear from your comments and learned from my own experience that focusing on my own balance and well being is a primary concern. We primary caregivers (I will not say Mother's because I have seen it in Father's & granparent's too) give of ourselves to the point that we are also not well. I would like to recommend to you www.hayhouse.com. (It has confirmed my trust my inner voice.) When you listen you will understand why I have suggested it. I have heard a saying recently that states, "Children choose their parents because they need to learn from us." That saying has comforted my feelings about both with my child and my own childhood. It is a work in progress and we learn as we go. Good Luck on your journey, it is as much yours as it is his.

July 6, 2011 | Unregistered CommenterCathy

Correction www.hayhouseradio.com - Use this one, not the main site. You can listen 24 hours a day.

July 6, 2011 | Unregistered CommenterCathy

Wow. You are so amazing, and I have no doubt your son is going to thrive because of your hard work. I love you sweetie! And I'm putting this link on Spunky FB—it will help so many people. XOXO

July 6, 2011 | Unregistered CommenterKelly

WOW, Lexie... YOU are amazing. Your son is so lucky to have you as his mom. I hope your son continues to see improvements. He will be on my heart and in my prayers for healing.
Hugs,
Megan

Hi Lexie, thanks for sharing the info about all of the treatments you've tried with your son. I have been following your blog for a while for GFCF recipe ideas, but I didn't know about your son's health issues. I just wanted to make a recommendation regarding candida treatments -- I have struggled with candida overgrowth for many years and finally have things under control through using the enzyme (cellulase) that breaks down the cellulose in the cell wall of the fungus. As far as I know, there are only one or two companies that sell this enzyme -- the one I use is Candidase by Enzymedica. I hope that if you try it it will work as well for your son as it has for me. Keep up the good work!

July 8, 2011 | Unregistered CommenterSBmomma

I am so so blessed to have you all for friends. I tell ya, I feel as though you keep me lifted up ("the wind beneath my wings", hardy har har :). This blog is my therapy and you are my supporting friends. Thank you thank you!! And I know that all of you would do the same for your kids/ARE doing the same. You'll go to any depth to ensure their well being.

SBMomma, thanks for your suggestion. We are going to continue on the "track" the doctor has laid out. We can't add any new supplements in during the HBOT for if we see dramatic results we will not know if HBOT or the supplement was the contributing factor. I will definitely look into it down the road. The GREAT thing about finally working with a doctor/nutritionist team is that I am not trying to figure out diet and supplementation on my own. These holistic teams know what affects what. First you get this started, then add this in. When that is functioning, you add this in. It's a whole chain reaction thing ... as I am learning. For example, there was no sense adding B6 (I think that's what it was) in when his candida was out of control because the candida overgrowth would inhibit the absorption of that vitamin.

We are at session 17 and I am really noticing a lot of mimicking. Whenever we, or brother, says something ... he will repeat it. Almost like he's testing out his vocabulary -- and big words, too! Heather, his PT, came by yesterday (thanks Heather!) for a visit and to do some benchmarking:

Balance Beam: Fell off average of 1x
Stepping Stones: Fell off average of 1x
Jumping: Average 6" on flat surface. Average 13" from elevated surface
Balance on One Foot: Average 2 seconds on right, 3 on left

We will retest in two weeks.

Stay tuned : )

xoLexie

Lexie, Thanks for sharing with such openness on a sensitive subject. I admire your courage for looking deeply this area - the health of our children is the most important thing - and it can be a scary thing to do. But with information comes power! I have seen many children improve greatly with biomedical therapies such as these. Personally, I have seen diet and supplementation to help so much, and many of my clients have said good things about HBOT. Thanks for sharing - I know it will inspire many parents. I wish you and your son health and healing on your journey!

July 8, 2011 | Unregistered CommenterJulie Matthews

May God bless you and your family, what a journey you are on. My heart breaks for you, but smiles for your son...he has a warrior for a momma! No doubt you find it hard to keep searching for answers, but doing all you can is all you can do! I agree with the feeling to bear it all because you think, or know, the world will tell you you're crazy. Sometimes I fantasize what our little chronically ill life would be like if everyone around us had the same problems, and actually did something about them. No judgement because I don't take my daughter to McDonald's, or say no big deal when the pop and ice cream is passed around. That isn't the world we live in though, so forge ahead we must. I'm so thankful for you though, because when it gets hard I know there are others out there trying to help make it easier...and are also struggling to stay on the path for their children. I'll keep you all in my prayers.

July 9, 2011 | Unregistered CommenterDiane H

Thank you so much for sharing your story, I admire you for how hard you are working for the well-being of your son. You are truly amazing and all of your hard work will pay off.

Much love,
Cassidy

July 9, 2011 | Unregistered CommenterCassidyS

Diane, your comment meant the world to me! Yes, and you are in my prayers, too. Thank you so much for your support. I hope I can be the same to you!

xoLexie

July 11, 2011 | Registered CommenterLexie

Cassidy, I hope all this work pays off, too. Love to you and thank you!!!

xoLexie

July 11, 2011 | Registered CommenterLexie

UPDATE:

Saturday 7-9-11 marked the 20th treatment. We spent the day out and about and my husband and I kept commenting on how many words were coming out of our boy'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!

Lexie

July 11, 2011 | Registered CommenterLexie

When I saw this post I tried to read it but I had a bad headache. I kept thinking about the little bit I could read through the week. I cope pretty much the same way as you...holding things inside. I thank you for sharing your heart with us and trusting us to know your struggles. You have overcome so many obstacles placed in your path and your son's update is great news! You must have so much joy hearing his commentary! This is wonderful! I will keep reading and listening to the video links. Thanks for sharing with us. I find autism and chronic fatigue, and multiple chemical sensitivities overlap in much of the treatments so this is very helpful to me. Hugs to you Lexie. ox

July 14, 2011 | Unregistered CommenterDebbie

I loved reading your blog about your experieces and journey with your son! You are such an amazing woman and mom and he is so lucky that he was blessed with such a great mom that is doing all she can for him. I miss our weekly therapy home visits, but I have stopped by to see him in the classroom a couple times and he is doing well! I learned a lot from you and I know that other families will also benefit so much from the information you provide on your website. Your guy is such a sweet boy and I will always remember my time with him and your family! Best of luck as your journey continues!

Sweet Heather, you brought me to tears. I couldn't have made it through without the mental support of his therapists. Thank you for all you have done and for still "checking in" on him at school. We owe so much of his progress to you.

xoLexie

October 5, 2011 | Unregistered CommenterLexie

Lexie, I really hope you continue to see improvement and it is great that you have such a positive attitude. I work with portable hyperbaric chambers myself and if you have any questions or need an opinion on something I am always here to help. You can contact me at 888 HBOT 123 x 703 or you can contact us through our website hyperbaricoptions.com

Thank you for sharing your story and I hope the best for you and your family

January 30, 2012 | Unregistered CommenterBobby Ellis

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