Hyperbaric Oxygen Therapy


Hyperbaric oxygen therapy (HBOT)


I have to start by saying that I am not a medical person; however, becoming the parent of a special needs child feels like you’ve been thrown into the deep end of the medical, advocacy, and research pool. My hope is to give you enough information to do your own research and ask your own questions when speaking with medical professionals regarding hyperbaric oxygen treatments and, ultimately, advocate for the coverage of HBOT for your child.

Ryan’s Diagnosis

One month before Ryan’s due date I went into labor. Monitors showed that he was in distress so an emergency c-section was performed. After he was born, the doctors did an ultrasound to determine why he was sleeping so much. There they found that he had suffered a stroke.

The stroke led to cerebral palsy, Cortical Visual Impairment, hypotonia of the trunk, hypertonia of the limbs, seizure disorder, and developmental delays. Ryan has been in weekly occupational, physical, and speech therapy since he was approximately 6 months old.

We’ve had improvements that were limited by seizure complications, Depakote side-effects, illness, and hospital stays. However, none of our improvements have been greater than those gained during and after hyperbaric oxygen treatments.

Our Journey

When we first heard about HBOT, we were a little skeptical. We had already followed so many “remedies” down dead-end roads. But once we saw Curt Allen’s video on You Tube, we knew that we couldn’t just walk away from it.


We opted to go see our son’s neurologist – now I know that all of the HBOT doctors would cringe at that but our neurologist withholds no good thing from our child and we trust him. He really is the best! While waiting we heard that he was busy so we were asked to meet with the physician’s assistant instead. She said, “We don’t recommend it because it has not been proven and we hate to see parents waste their money.” Once the neurologist came in, the PA repeated her recommendation and his neurologist asked what we thought. I told him that I thought we could get a grant or do fundraisers. He quickly said, “Go for it!” with no hesitation. I asked if he had any concerns about causing harm and he did not.

We are so thankful that he gave his blessing because the treatments have changed our lives. His first session was in July 2010 when he was 6 years old. One of our favorite changes was in Ryan’s happiness; around dive 20 his crying dropped to about 10% of what it had previously been. Mine did as well. His neurologist believes that this is most likely related to the neurons in his digestive track since it holds the second most neurons – second only to the brain. And, of course, neurons cannot function properly without an adequate supply of oxygen.

One of the first things we noticed was the ability to stretch his left wrist to a functional position. This was during his second day. With continued growth spurts, however, it can be difficult for us to protect his tendons and prevent contractures without HBOT.

The next thing we noticed was an improvement in his vision. He was far more visually attentive than we had ever seen him. He began refusing to wear his glasses. His optometrist said that it was because, with the improvements, the glasses were too strong.

Prior to HBOT Ryan’s swallow was audible, which made the therapists cringe due to the risk of aspiration. Since his treatments, we have only seen that swallow return occasionally for brief periods when he has a cold. This past January he said his first sentence. He said, “I love ou (you).” One day after a seizure in April, he napped and when he woke up I asked how he was and he quickly responded with, “Hungy (Hungry)…..egg…..oran duice (orange juice.)” Before his treatments he had never put words together. His communication had been limited to single words here and there such as egg, eat, go, hungy (hungry) and dink (drink).

In the 8 months prior to HBOT, Ryan was in the hospital every other month but has not had one hospital visit since returning home from his treatments. This has lead to reduced absences at school. And his teacher also feels that he is far more attentive than he was the previous year.

Prior to our first round of HBOT, Ryan could not sit up on his on for more than a minute or two. During HBOT, he began to sit up for more than twenty minutes and has never lost that ability. In fact, his physical therapist feels that his progress has never been faster than it has been since HBOT. In the script written by his neurologist for the second round of treatments, he noted that Ryan had made improvements not previously found in any other treatments.

Towards the last few days of his first HBOT session we had complications from a diet used to control his seizures. We, along with the doctor, determined that the diet was just too hard on him since we couldn’t get him to drink enough liquids. We took him off of the diet yet he remained seizure free for approximately 9 months. When daylight savings time changed in April, we found the strobe lights on the school buses began to trigger his seizures again. Even with keeping him away from flashing lights, we began to see occasional seizures. We opted to return to the diet until we could get him back in for another round of HBOT.

We started our second round of HBOT June 15, 2011 and, so far, he has completed 28 of those dives. We had begun to see some of the same complications from the diet and stopped the diet after dive 18. We did see another seizure after coming off of the diet but it was mild and we have opted to wait a little longer. As of dive 28 there have been no further seizures.

We also decided that since he was treated at 1.75 ATA last year and the seizures stopped that we would increase the pressure from 1.50 ATA back to the 1.75 ATA received last year. Interestingly enough, I had not been able to stretch his wrist this year the way that I had been able to last year. Once the pressure was increased, I was able to once again stretch his wrist back to a functional position.

More to come – I will update as we finish the second round and see continued improvements. One of the amazing things with HBOT is that the continued improvements don’t end with the last dive. We continued to see improvements through at least nine months.  See the page titled "Ryan's HBOT Journey" to see his progress in the months following the hyperbaric oxygen treatments.

Ryan completed his round of 40 dives on July 6, 2011. Our current plan is to do 10 dives a month beginning in September 2011, provided we do not go longer than 3 months without treatments.  Going longer than three months will result in another prolonged session.

Description of Treatments

Ryan’s rounds involve 2 “dives” a day until he completes all 40. They are called dives because each session simulates deep sea diving by increasing the pressure until you reached the desired treatment level. The treatment level is measured by atmosphere absolutes (ATA). The most common level of treatment seems to be 1.5 ATA.

Once the treatment pressure is reached, the chamber is filled with 100% oxygen. For Ryan, it takes about 10 minutes to reach the desired level (1.75 ATA), then one hour with the oxygen, and another 10 minutes to go back to normal pressure.

Our first round was in a multi-place chamber, which held five patients and five caregivers. The patients would put on clear hoods that delivered the oxygen once full pressure was reached.



This time we are in a mono-place chamber. The chamber is basically a bed inside a pressurized tube. The good news is that the caregiver gets the treatments as well. Most allow for the viewing of a TV/DVD. Our experience has been that computerized chambers are easier on your ears when descending and ascending. 



Portable chambers are also available for purchase; however, they can only reach 1.3 ATA and they compress room air rather than pure oxygen. You can also wear a mask that delivers 24% oxygen. Modified chambers can be dangerous so avoid the use of chambers that have been modified beyond what they were manufactured to do.

We prefer the hard chambers because the increased pressure is more effective (as we’ve seen in Ryan by simply going from 1.50 ATA to 1.75 ATA) and room air or even 24% oxygen does not have the same healing potential that 100% oxygen does.

Part of the debate or criticism of HBOT is related to the dosing recommendations, such as the frequency, duration, pressure and concentration of oxygen. Those decisions would be based on the patient’s age and diagnosis. There is also a concern of oxygen toxicity if the pressure, duration, frequency and/or concentration of oxygen are too high. So, more of a good thing is not always better.

http://www.hbot.com/blog/hbot-staff/hyperbaric-oxygen-theraphy-global-cerebral-ischemiaanoxia-and-coma/05/06/11

Insurance / FDA – Facts to Know When You Appeal a Denial

First of all…..appeal denials!!

An interesting fact, one of the reasons that insurance companies deny coverage of HBOT is because the FDA hasn’t approved it for the patient’s specific diagnosis. However, in the case of Cerebral Palsy, they do have several approved diagnoses that are similar to Cerebral Palsy: air embolism, carbon monoxide poisoning, brain decompression sickness, brain abscess, and cyanide poisoning. All of these diagnoses are considered hypoxic/ischemic conditions. In other words, they all involve injuries to the brain brought about by the loss of oxygen. Therefore, it stands to reason that HBOT would be effective for all brain injuries regardless of the specific cause of the injury.

In our case, it was helpful to complete the first round without coverage and then show the before and after evidence. It is hard to deny a reduction in healthcare costs of over $40,000 in 8 months. To date we have a “we’ll consider covering”; however, we do not know how much will be covered or for how long.

Here are some tips for writing your appeals letter:

1) Think about how the company will benefit from spending money on the treatments, such as what other medical treatments/services might be avoided or eliminated.

2) You want the help of the person reading the letter so be respectful so that they want to help your child.

3) Paint a picture of your child that forces them to see them as a person rather than a number.

4) If you’ve had previous HBOT, detail any past improvements noted during HBOT treatments and in the following six months.

Community

Our church, friends, and Wesley’s co-workers rallied around us to allow for our first and second round of hyperbaric oxygen treatments. You can see the local news story at:

http://www.wmbfnews.com/story/14069467/pass-the-cash-ryan-howell

Things to Help In Planning

HBOT helps to detoxify your body so to assist with this it is recommended that you take in plenty of antioxidants and water. We struggle with Ryan’s diet so he also takes vitamins A and E. Of course, you would need to speak with your doctor regarding supplements.

The time in the chamber, and approximately one hour after, are the best times to stretch and work your child. We’ve noticed the stretching is less bothersome to Ryan during those times as well. Having said that, you will feel far busier than you can begin imagine so don’t beat yourself up if that isn’t always possible.

Cod liver oil (gross I know) is excellent brain food. They do make a lemon flavor that Ryan actually likes. It can be found at your local vitamin store.

Questions to Ask When Seeking an HBOT Clinic:

1) What pressure will be used?
2) What type of chamber is used?
3) What is the percent of oxygen delivered during the treatment?
4) How old is the equipment and what was the date of the last maintenance?
5) Has it been modified?
6) What is the maintenance schedule for the chamber?
7) What type of training are the technicians required to complete?







11 comments:

  1. Thank you for this post, it's very informative. I have always wondered about HBOT for my son, now 7, who had a stroke in utero. Very inspiring story!

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  2. Thanks for the informative post. Our son (who has been diagnosed with CP) just finished 14 sessions of HBOT (7 before & 7 after) in conjunction with Umbilical Cord Stem Cell treatment. HBOT treatments were done in a chamber a bit different from both types you did though (chair in a capsule that looks like a miniture space ship & he wore a mask with 100% medical grade oxygen). Curious how your son did in the 1st type of chamber (with the hood etc)? Did he freak out when they put the hood on? Other treatments were done out of state & in Mexico & local HBOT offered does the hood type like the 1st one your son did. Please advise. Thank you!

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  3. You're welcome. I was worried about how he would handle the hood but he did great. In fact, once felt the oxygen blowing in he was almost giddy. I don't know if it was just he sensation of air blowing on him or how the oxygen itself made him feel. We have been very pleased with the clinic that we are currently in and will definitely be back. Dr. Pete is also open to talking with medical professionals in our area to see about helping them add HBOT to their clinic. Their link is: http://www.hyperbarictherapylowcountry.com/AboutHBOT.html
    Thank you for your comments and I pray that all goes well with your little guy. Our sons are very close in age.

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  4. It's wonderful that Ryan has seen such great results from HBOT. We did 76 dives (one of her ear tubes pooped out, so we didn't make it to 80) with our daughter, Naomi. We started when she was 9 months old. Her diagnosis is a dopamine deficiency - she basically has the symptoms of some one with Parkinson's when she's not medicated. We also saw great results. We noticed improved strength, much better eating and drinking (from g-tube dependent to nearly off the tube entirely), and an overall much happier little girl. I'm so happy that we decided to do HBOT (even though her neurologist wasn't on board, and still won't admit that it helped her....grrrr).

    It sounds like Ryan is doing amazing things! I hope things continue to improve for your little one.

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  5. I have done HBOT treatments with my son Austin who is now 6. He has severe brain injury due to a VKDB at 5 weeks of age. We have done 60 in a hard chamber and often use a home chamber. I believe it has helped him with spasticity and over all cognition. It has not helped his seizures however. That is so wonderful that it has helped your son Ryan's seizures.

    I also wanted to add that in your insurance appeal process it is also good to send a picture of your child and your family. It really helps them to see you as a real person needing help. It has worked for us.

    Thanks for doing this site. God Bless,

    Jenny Wade
    jenwade@centurytel.net
    www.austinwade.net

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  6. Many Blessings to you and your handsome son. I was touched by your story and your courageous faith in handling his medical issues. I'm checking in from VoiceBoks, and I look forward to reading more of your posts, I wish you and your family many many blessings. I think your Blog will be a great source of comfort for other parents facing the same journey!

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  7. Thank you for all this information, I have a daughter who has cerebral palsy, she is 7 years old. I have low income, and am heart broken that I cannot afford Hbot. Please let me know if there is a way for funding that you know of. Thank you, Andria

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  8. Thanks for sharing. Our daughter has had over 300 treatments over the last 10 years. we still continue to see improvements. The more we all share the more parents will "take the leap of faith" and get HBOT for their children.
    Lisa Deister
    Lisa@hhi-kc.com
    www.hhi-kc.com

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  9. Thank for sharing your HBOT treatment. Please feel free to let my son, Daniel's FaceBook fans know your experience with HBOT.
    Thank you,
    Daniel's mom
    https://www.facebook.com/WalkingDaniel
    http://www.youtube.com/WalkingDan

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  10. Please keep your posts coming! HBOT is amazing! My two daughters and I traveled to Louisiana (From Maine) this summer and had the amazing opportunity to be seen and treated by Dr. Paul Harch! Dr. Harch is phenomenal and such a wonderful, kind & brilliant man. He is the guru when it comes to Hyperbarics and treating brain injuries. We all experienced amazing results. And yes, the improvements do continue after you have completed your dives. Please see www.hbot.com for more information. Good luck and keep pushing, this should be an acceptable treatment for so many. Jennifer

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  11. I love the name of your blog. :-) I believe in Jesus too. <3 Thank you for sharing your story. My two year old has brain cancer. Our story is long, so I won't try to tell it here. Anyway, she has subclinical seizures and is on seizure medication because she had one break out seizure. Anyway, the medication is causing a lot of issues and we are looking at other options. We also have some friends whose son's brain cancer is being diminished by HBOT (because his oncologist gave up on him after 7 neurosurgeries & 2 courses of irradiation therapy) and we are thrilled to find something that could potentially treat our daughter's seizures & hopefully keep the cancer away.
    Anyway, I know people keep talking about how expensive HBOT is, but it sounds relatively cheap to me after going through the long and painful process of getting FDA approval to use antineoplastons just to have the Burzynski Clinic demand that we come up with $35,000 just to start treatment. All this after several months of the clinic telling us to keep certain details quiet until we got FDA approval so that we did not experience hindering scrutiny that would just make things harder. Those details would need to have been exposed to do a successful fundraising campaign, so things didn't work out. Anyway, our daughter went downhill too quickly and we just had to get her on chemo. The first round resulted in a remarkable reduction in tumor and almost complete elimination of all visible metastases, but there is very little statistical likelihood that it will truly be curative (especially in the long run). We don't want to wait for a recurrence just to have to fight to get the treatment we want again, so we are hoping to strengthen her body through alternative means.

    Thanks again for your story. It helps a lot in the decision making process. I'm also enjoying reading the comments and hearing about others' experiences (even if they aren't as positive as yours).

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