A Typical Day with Hayden Part 2 : Hyperbaric Oxygen Therapy

Hayden has been receiving hyperbaric oxygen therapy (hbot) for a little over a year now.  We started off by driving to Carmel twice a week for treatment.  We did 2 hours of hbot while we were there.  The drive was 5 hours round trip.  When we were about 20 hours into treatment we started to some significant improvement in Hayden.  He was gaining new words every day, he was not as hyper, and he was sleeping better.  At that point my parents gave us the money to purchase a chamber to have in our home :)

I had been look at chambers and talking to different people and companies to purchase one.  The average price specific model I was looking for (Vitaeris 320) was $20,000.00.  They are around $32,000.00 brand new and the does NOT include the oxygen concentrator.

I started watching for a Vitaeris 320 on ebay.  I found one that the people were located 3 hours away and were willing to deliver, set it up, and instruct us on how to use it.  There was also another person that wanted that specific chamber and my plan was to bid at the last minute.  Well at the last minute Ebay pulled the listing.  I was CRUSHED!!  Come to find out it is illegal to sell medication on ebay (oxygen is a medication) and you have to go through the proper channels and have a prescription....yada....yada....yade.

Well if you know me I am not one to let a little red tape stop me ;)  I could have gotten a prescription and I could have went through the proper channels to get Hayden's hbot.  All that takes time and additional $$$$ and I didn't have a penny or a second to spare.

I contacted the lady immediately and worked out a deal with her.  We paid (well my parents) $9100.00 for Hayden's hbot.......what a DEAL!!  They delivered it, set it up, and gave us instructions on how to use it.   B-I-N-G-O!!!

We have tried a few different protocols on hbot with Hayden, but what works best for him is 1-1.5 hours daily.  Hayden is seriously a hot mess with hbot.  Brandon or myself get in the chamber with him.  Hayden can take snacks, drinks, toys, or whatever else he may want in.  The majority of the time we let him have his iPad in the chamber.  This is kind of a nice chill out time for all of us.  I feel guilty about letting him have his iPad in there, but Brandon and I need down time too.

We have the chamber set up in our master bedroom.  Hayden loves his time in the "rocket ship."  We have never had an issue with him not wanting to get in or stay in.

The large tan box is the oxygen concentrator.  We use a flow of 8 lpm.  The two silver boxes are the air compressors.  The air compressors are what inflates and keeps the chamber inflated

A picture of the chamber partially inflated with Brandon and Hayden inside.

Hayden inside playing his iPad and holding onto a car.  If you look in the left upper hand corner of the clear window you can see the oxygen tubing.  Ideally Hayden should wear a mask to provide a high concentration of oxygen to him, but he won't wear it.

This is what the chamber looks like fully pressurized.  It only takes about five minutes to pressurize and depressurize.

How does hyperbaric oxygen therapy (HBOT) work? Hyperbaria - Increased atmospheric pressure as a means of increasing oxygen uptake without an enriched oxygen source Hyperoxia - Increased total oxygen content Hyperbaria is based on the concept of the relationship of gas pressure and uptake in liquids (blood, plasma and tissues).  Henry’s Law states that “a gas is dissolved by a liquid in direct proportion to its partial pressure.”  For example, at sea level, atmospheric pressure is 760 mm Hg, the oxygen concentration is 21% and the body’s oxygen content or partial pressure, pO2, in blood and plasma is ~ 40 mm Hg. Red blood cells have a limitation as to how much oxygen can bind with hemoglobin.  The plasma portion of the blood typically has about a 3% oxygen concentration. By placing someone in a 3 psi pressure hyperbaric environment, the increase in atmospheric pressure at sea level goes from 760 mm Hg to 915 mm Hg.  This increase in gas pressure, increases the partial pressure of the oxygen gas and thus forces more oxygen to be dissolved in the plasma.  This saturation of oxygen in the blood, due to the Hyperbaric Oxygen Therapy or HBOT, allows the extra oxygen to be diffused or transported to the surrounding body tissues.  Thus, oxygen transport by plasma is significantly increased under hyperbaric therapy (HBOT).  At three atmospheres pressure, enough oxygen can be dissolved in the plasma to support the oxygen demands of the body at rest in the absence of hemoglobin! Hyperbaric Oxygen Therapy (HBOT) is designed to boost the supply of oxygen to ischemic tissue or to diseased tissues that respond to increased oxygen levels.  Increasing the volume of oxygen dissolved in the blood plasma, that is brought about by hyperbaric therapy (HBOT), produces five basic effects: Reduction of volume of gas bubbles in the blood Vasoconstriction, which reduces edema and secondary hypoxia  Restoration of aerobic metabolism to ischemic tissue  Detoxification of poisoned tissues  Enhanced phagocytosis Henry’s Law- Henry’s law states that for a gas-liquid interface the amount of the gas that dissolves in the liquid is proportional to its partial pressure.  So Henry’s law helps to predict how much gas will be dissolved in the liquid.  The actual amount also depends on the solubility of the gas as well as its partial pressure. Dalton’s Law-John Dalton observed that the total pressure of a gas mixture was the sum of the pressures of each of the gases if they were to exist on their own.

How does hyperbaric oxygen therapy (HBOT) work?

Hyperbaria - Increased atmospheric pressure as a means of increasing
oxygen uptake without an enriched oxygen source
Hyperoxia - Increased total oxygen content

Hyperbaria is based on the concept of the relationship of gas pressure and uptake in liquids (blood, plasma and tissues).  Henry’s Law states that “a gas is dissolved by a liquid in direct proportion to its partial pressure.”  For example, at sea level, atmospheric pressure is 760 mm Hg, the oxygen concentration is 21% and the body’s oxygen content or partial pressure, pO2, in blood and plasma is ~ 40 mm Hg.

Red blood cells have a limitation as to how much oxygen can bind with hemoglobin.  The plasma portion of the blood typically has about a 3% oxygen concentration.

By placing someone in a 3 psi pressure hyperbaric environment, the increase in atmospheric pressure at sea level goes from 760 mm Hg to 915 mm Hg.  This increase in gas pressure, increases the partial pressure of the oxygen gas and thus forces more oxygen to be dissolved in the plasma.  This saturation of oxygen in the blood, due to the Hyperbaric Oxygen Therapy or HBOT, allows the extra oxygen to be diffused or transported to the surrounding body tissues.  Thus, oxygen transport by plasma is significantly increased under hyperbaric therapy (HBOT).  At three atmospheres pressure, enough oxygen can be dissolved in the plasma to support the oxygen demands of the body at rest in the absence of hemoglobin!

Hyperbaric Oxygen Therapy (HBOT) is designed to boost the supply of oxygen to ischemic tissue or to diseased tissues that respond to increased oxygen levels.  Increasing the volume of oxygen dissolved in the blood plasma, that is brought about by hyperbaric therapy (HBOT), produces five basic effects:

• Reduction of volume of gas bubbles in the blood
• Vasoconstriction, which reduces edema and secondary hypoxia 
• Restoration of aerobic metabolism to ischemic tissue 
• Detoxification of poisoned tissues 
• Enhanced phagocytosis

Henry’s Law- Henry’s law states that for a gas-liquid interface the amount of the gas that dissolves in the liquid is proportional to its partial pressure.  So Henry’s law helps to predict how much gas will be dissolved in the liquid.  The actual amount also depends on the solubility of the gas as well as its partial pressure.

Dalton’s Law-John Dalton observed that the total pressure of a gas mixture was the sum of the pressures of each of the gases if they were to exist on their own.

Hayden's Son Rise Therapy Room

I have had a few questions about the type of therapy program we are doing and what the room looks like. So here is the answers :)

We are running a full time Son-Rise Therapy Program in our home for Hayden.  He is currently getting about 30 hours a week of therapy and my goal is to get it up to about 60 hours a week of therapy.

So what is the Son-Rise Program?  Well in my own words it is a loving and respectful play therapy that Hayden loves :)  I must say that we LOVE it too!!  I truly enjoy getting down on the ground with Hayden and just spending time with him with no distractions.  It is honestly a nice break from a very over stimulating world.  There are no electronics, no other people.  It is just Hayden and I doing what he enjoys.

The main focus in Hayden's Son-Rise program is improving and building on communication and eye contact.  We do this through joining him, motivation, excitement, energy, and enthusiasm.  Tonight in therapy room Hayden and I had a great session.  He usually has me draw the Thomas the Tank Engine characters on his dry erase board.  When we started doing this 5 weeks ago he would just say, "Harold" when he wanted me to draw him.  Tonight he said, "Draw Harold Helicopter Mommy."  I then said, "You want me to draw Harold the Helicopter."  Hayden replied, "YES."  Hayden never said the word "yes" until about a month ago.  It seemed that "yes" had no value to him.  He now uses it frequently and correctly.   Normally I just go ahead and draw the face, number, details, and get the correct colored marker myself.  Well not tonight, a light bulb went off!   I decided to ask Hayden to hand me the color marker that Harold is.  Much to my surprise he did and told me the color.  I then congratulated him and made a big, huge deal of it:)  I then went on to draw Harold the Helicopter. I decided to ask Hayden to draw his face.  He grabbed my hand and we drew it together.  We then went on to draw a few other characters.  He drew the face himself on several of them, gave me the right color of markers, and told me what numbers they were.  It was beautiful!!!  I think we spent 20 minutes on this activity.  Hayden stayed right with me and was fully engaged and chatted back and forth with me.  Through out the whole activity I praised him and told him how smart he was, thanked him for his eye contact, and told him how much I enjoyed spending time with him and drawing Thomas the Tank Engine Characters with him.  I need to work on my drawing skills, but you can see the faces that Hayden drew and he even drew a couple wheels on James.

Hayden transitioned from drawing on the dry erase board to drawing on himself.  I thought this was a good opportunity to join him.

At first Hayden was in his own world coloring himself.  He then noticed that I was coloring my hands.  He had the biggest grin on his face.  During this time I am telling Hayden how much I enjoy coloring myself with him (which I do....it is truly relaxing) and making funny noises while doing so.  Hayden then looks at me in eyes.  This is a green light!!!  I then expand on the idea of coloring myself.  A little background.....Hayden loves my flabby, nasty, jiggly belly (which it's his fault it is like this).  He likes to blow raspberries on it and jiggle it.  With out hesitation I lifted my shirt and started to draw a big circle on my belly and asked Hayden to draw the eyes, ears, nose, and mouth.  He was so EXCITED to do this that he could hardly contain himself.  We then made my belly jiggle and I would make the smily face talk.  He then lifted his shirt and said, "face my belly."  I drew a smily face on his belly.  Great fun I must say.  He was losing interest so I chased him around the room with my jiggly, smily face belly.  Oh, how we both laughed and laughed and laughed.

Here is what Hayden's Therapy Room looks like.  It use to be an old crapy, leaky sunroom.  Not anymore!!


This is a picture of the french doors that we had a one way view mirror put in.  On the inside it is a mirror. Hayden LOVES his mirrors!!

All of toys and games are put up high on a shelf on purpose.  This way he has to ask to get what he wants.....very motivating!!

The windows have a frosted glass film on them.  They let light in, but you can't see out.  This aids in providing a distraction free environment.

Here is the slide that we do creative things with.  Hayden likes to jump off the top or jump to me from the top.  I like it when we roll several marbles down it and they hit the metal door stop and make a pinging noise!!

This is what the french doors look like on the inside of the house.  I can see in, but he can't see me :)  Observation is great because we can provide feedback on therapy.

Is it time to move on??

I can't believe that it is the end of October already!!  Time is seriously flying by.  Hayden's therapy room is finished and he is getting about 30 weeks of therapy a week.  We still need more volunteers!!!  We need volunteers to work with Hayden or watch Ruby so we can work with Hayden.  If you know anyone send them our way.

Hayden had a check up at his specialist in Carmel this week.  Hayden weighs 32 lbs and is 39 inches tall. Overall he had a good check up.  We are fading out some of his supplements(thank goodness).  Hayden will start seeing the doctor every 3 months instead of every 5 weeks.  He got his lab results back and his gut remains a yeasty mess.  GRRR!!!!  We have been working so hard for the past two years to get rid of the yeast and it just won't let go of my little man.

The whole yeast thing has me.  I am thinking about and researching different options to do and try.  I am leaning towards a diet change.  We are already gluten, almond and dairy free, limit soy, limit sugar, no artificial colors, and an all organic diet.  The two different diets that I am looking at is the SCD (specific carbohydrate diet and the GAPS diet.  These diets eliminate food that feed yeast.  The problem is that they are a challenge to do.  I once thought that it was going to be impossible to get Hayden off dairy, but we did and he helped him so much.  I am leaning towards the SCD diet because it does not involve going to the butcher and getting bones from animal cut in half to make stock with and eating fermented vegetables is not a requirement of the SCD.  However the GAPS diet is amazing for gut healing.  I wish someone could just tell me what to do!!!

I am also considering taking Hayden to a different specialist for a second opinion.  I kind of feel like our Dr in Carmel has gotten Hayden as far as she can.  She is wonderful and I have a ton of respect for her, after all she gave me my son back :)  There is just something telling me that it is time to move on.  This is not going to be an easy decision.  The one doctor that I am considering seeing has an office in Texas and one in New York $$$$$$!!!

I do know this though.....when I switch Hayden's diet I am going on that diet with him.  NO more cheating for me!!!  If it is good for him it is good for me and I need to be 100% supportive and not cheat behind his back.

I think I have also figured out Hayden's strange bouts of SUPER-DE-DUPER hyperactivity no-sleeping cycles.  Back in May after Brandon and I went the Autism One we switched how we were doing Hayden's hyperbaric oxygen therapy treatments.  We started using a protocol that you do 1.5 hours a day for 30 days and then take 30 days off from hbot.  We also started Hayden's heavy metal detox (chelation) at this time.  I thought his nightmare of a behavior was from detox and left it at that.  Well he have been off chelation for almost 2 months now.  Hayden had a round of his freakish hyperactivity no-sleeping period earlier this month.  Well this month is a non-hbot month.  I started thinking about why, what are we doing differently, did he eat something he was not suppose to??

Ta-Dah.....light bulb went off in my mind....it's the hbot!!  Sure enough two sessions in the hbot, Hayden was sleeping better and the freakish hyperactivity was going away.  Huge sigh of relief.  So we are now going to do one hour of hbot every other day.

I wish I would have video taped his freakish hyperactivity.   I mean constant movement with several movements in one and a hot stimming mess.  It was HORRIBLE!!!  He would be up at 3am and ready to play and not take no for an answer.  It is amazing that Brandon and I survived this behavior.  Just thinking about it makes me want to hide in a corner and rock back and forth.

We have a teacher from the Son-Rise program coming the first week of December to working with Hayden, answer our questions, and give us some feedback.  I am very excited about this.  Brandon and I have also decided that I am going back to the Son-Rise program in April for another weeks worth of training.  I can't wait to go back.  It is such an amazing place.  I wish we could just pack up and move there so I could become a certified Son-Rise teacher and help more families.  Maybe one day!!

Hayden has been making some great strides with the Son-Rise program.  He is communicating so much more.  He is actually telling me  his emotions.  I ask him what is wrong and he tells me that he is sad or angry.  He has even told me he is happy :)  In the past week we were snuggling and he sang the whole entire song that I made up for him as a baby.  WoW...that sure brought out the water works!!  Even Brandon had a tear in his eye.  His eye contact is also greatly improving.

I am beyond proud of my little man and all of his hard work.  It is pretty amazing that we our on our way to recovery.  I read a snip it of his evaluation to public school system did when he turned three.  It said that Hayden severely autistic.  It is always good to remind myself of where we were and to think of where we are now.  Hayden is no where near the severe side of autism.

Today I pretended to be "normal"

Well, any of you that know me knows that I am not "normal" ;)  I am just me...I laugh at things that are not funny, and say the most random things.  I eat strange foods and do strange things with my kids.

Today Ruby had her two year old well baby check up at the new pediatrician's office.  I was excited to see how much she has grown and to show off my amazing little girl.

We got up today and I was excited to dress up my little girl for our big day out together.  Ruby wore tights, denim skirt, panda shirt, a striped cardigan, and her brown boots.  I fixed her hair just so.  I must say she was looking super cute :)  I even fixed my hair and did my makeup.

Off we went.  On the way to the doctors office.  I thought of the questions that they were going to ask me about her development.  I smiled as I thought of the answers.  All of my answers pointed to a perfectly normal, healthy, thriving little girl.   What a gift my little Ruby is.  She truly amazes me every day.

We arrive at the doctors office and we walk in together.  Ruby stays right with me and is happy to have Mommy all to her self for her big girl check up.  We are chatting away about all the things she is seeing.  We sign in at the desk.  Ruby is calm and smiling.  She takes her coat off and throws it on the floor.  I ask her to pick her coat up and hand it to me and she does.   Ahhh......success, my child is doing what I asked of her and not trantruming on the floor.

We sit in the office and Ruby points to the pictures of animals on the wall.  I pick her up and we walk around look at all the animals.  Ruby is telling me what they are and making the sounds of what they make.  The secretary complements me on what a smart and well behaved little girl I have.  I stand a little taller.  A little boy drops his toy in the waiting room and Ruby picks it up and hands it to him.  Check, Ruby has compassion for others.

It is then our turn.  Ruby jumps up when she hears her name and heads towards the nurse.  She smiles at the nurse and says "hi".  The nurse weighs Ruby and measures how tall she is.  Ruby is 27lbs (50%) and 37 inches tall (75%).  The nurse asks me the developmental questions......which I am super eager to answer!!!

I know that Ruby is right on target and this makes me feel like I am doing something right.  That my child is "normal" so I get to be "normal"  Ruby is right on developmentally (which I already knew that, it just feels good for someone else to acknowledge that).

The nurse practitioner comes and does her assessment on Ruby.  Ruby opens her mouth and lets her look in, she turns her head to let her look in her ears, she sits still to have her heart and lungs listened to.  Ruby even asked to have her mouth looked at again.  At this point I don't believe what is going on!!!!   That's right people my child is well behaved and I am an awesome mom to a normal child.  I feel like I just won the lottery!!

The NP then asks some questions about Ruby's health history and vaccination history.  I proudly speak up and say that Ruby has only had the stomach flu and a cold.  She has NEVER been on antibiotics and has never had an ear infection.  I then take a breath to share that Ruby is NOT vaccinated.  I told her that I am going to re-evaluate my vaccination decision for Ruby when she turns three.

Her response was great!!  She asked me why I was going about Ruby's vaccinations this way and when I told her she listened.  She then told me she supported my decisions as a parents.  WOW!!!  Woot....woot...woot!!!!!  I think we have finally found the pediatrician's office that we are going to stick with.

The NP tells us that everything looks great and that Ruby does not need to be seen for another year.  I help Ruby get dressed and he head to the check out desk.  Ruby didn't want to leave.  She said, "I stay."

As we were checking out I seen a stack of brochures.  One of the stack of brochures was about what to do when your child is diagnosed with.  SMACK....there went my morning of pretending to be normal!!!

Seeing the brochures quickly brought back to my mind all of the things that I felt and feared when I first suspected that Hayden was autistic.  It also brought up the list of things that I was told he would never do and what to expect.  It reminded me of what trips to the pediatrician were like with Hayden.  I can't even put into words how it feels to have your child to be chronically ill and to have a disability.  It use to break my heart to take him to the doctor.  I didn't want to hear what he was not doing......I already knew it.  I didn't want to be the person that everyone started at because my child was on the floor screaming or doing odd things with his cars.

I just wanted to be normal and to have a normal, healthy child!!!

I am beyond great full that todays events made me realize that being normal doesn't matter,  it doesn't make me a good mom or a bad mom, it doesn't define who I am.  Those brochures were placed on that desk to seriously smack me in the face and say, "Hey...it is what it is."  Be true to yourself!!

Yes, I have a neuro-typical child and a non-neuro-typical child.  We do strange things.  We have a slide in our living room, a swing in our hallway, and trampoline in our kitchen.  I am a crazy person when it come to my children's health.  I know every ingredient in every bite of food that my child eats.  I am a warrior for my children and will never give up on them.

So I say screw NORMAL :)  I love my family and myself just they way we are and I don't want to pretend to be something or someone that I am not.