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Interview with Shannon Kenitz : from a prognosis of death â?? to thriving via hyperbaric oxygen therapy a b Shannon Kenitz and Teri Small a b Executive Director AutismOne Radio The International Hyperbarics Association 1816 Houston Ave . Phone : + 1 562 818 2115 Fullerton , CA 92833 USA Email : skenitz @ ihausa . org Email : tsmall @ autismone . org Website : www . ihausa . org Website : www . autismone . org Abstract Hyperbaric oxygen therapy , also known as HBOT , uses an increase in atmospheric pressure to allow the body to incorporate more oxygen into blood cells , blood plasma , cerebral - spinal fluid , and other body fluids . Mitochondria are responsible for processing oxy - gen and converting substances from the foods we eat into energy for essential cell functions . Shannon Kenitzâ??s daughter , Grace , was diagnosed with a very rare mitochondrial disease : cytochrome C reductase . After virtually living the first three years of her life in the hospital , considered in a vegetative state , and blind , doctors refused to continue measures to prolong Graceâ??s life . Shannon Kenitz took her daughter to receive hyperbaric oxygen therapy â?? the only thing that was changed â?? and Grace has progressed to , among other things , being off seizure and GI medicines and the feeding tube ; and Grace is no longer blind , she is walking , she is thriving , and she has received normal EEGâ??s and a normal muscle biopsy . Keywords : mitochondrial disease , mitochondrial cytochrome C reductase , hyperbaric oxygen treatment , autism And at that point Gracie was three months old and we went Hope and possibilities : something that every one of our chil - to an ophthalmologist and a neurologist in the same day , and we dren â?? more able or less able , on the spectrum or considered went to the ophthalmologist first and I noticed that Grace al - neurotypical , with or without health issues â?? needs their parents ways had a lot of eye rolling and it was as if Grace always to believe in , and that is what Shannon Kenitz did for her little looked through me instead of at me ; and when we were with the girl , Gracie . Degreed in psychology , Shannon Kenitz is the Ex - ophthalmologist and she did this eye rolling with her eyes he ecutive Director of the International Hyperbarics Association , a said to me , â?? You know Shannon , I believe your daughter is nonprofit organization that promotes hyperbaric therapy having seizures . â?? And so instead of sending us to the clinic for through education and research . Shannon believed in hope and our regular scheduled appointment with the neurologist they possibilities and brought her daughter back from a prognosis of ended up taking us to the hospital and that is where our journey death to the potential of life . Shannon , thank you for being with us here today . began . We did the EEG on Grace and sure enough Grace was having seizures . Thank you for having me . So when did you receive a diagnosis ? Shannon , you also have a daughter , Lily . How old is she and Well a diagnosis , in the beginning , they thought that she had how has her health history been ? epilepsy that then turned into infantile spasms to the brain , but My daughter Lily will be turning 10 in September and she her true diagnosis did not come until a year - and - a - half into this has had no problems with her health . She is a very healthy 9 ½ - whole process . We had been transferred from one hospital to year - old child . another . By this time we had gone to Mayo Clinic , we had gone to New York Presbyterian , we had gone to Chicago Childrenâ??s . Gracie is 7 - years - old this month , please tell us about your They kept transferring us between all these hospitals because pregnancy , Gracie at birth , and how she was her first three Graceâ??s whole body was shutting down . She was having to years of life . have blood transfusions , albumin transfusions , platelet transfu - sions , she wasnâ??t being able to regulate her temperature , so she My pregnancy with Grace , I did have some complications , was being kept warm under a heat lamp . By this time she had gone blind , a feeding tube was placed but more just the typical problems with hyperemesis and being because she was â?? failure to thrive , â?? she was 1 ½ - years old and able to tolerate eating and so forth ; and so they put me on a barely weighed in at eight pounds . And we were at Mayo Clinic medication to help me through that . When Gracie was born , we when she was 1 ½ - years old having a brain biopsy done because thought we were taking home a healthy little girl and approxi - they thought she had a different neurological disease , and when mately a week after I brought her home , I knew that something our muscle biopsy came in from Buffalo Childrenâ??s Hospital , was very wrong . Unfortunately , it took about three months for that showed that Grace had a very rare form of mitochondrial , the physicians to listen to my instinct before being referred out called mitochondrial cytochrome C reductase deficiency . to any other specialist that may be able to help us find out what was wrong with Gracie . doi : 10.1588 / medver . 2006.03.00112</Page>
    <Page pageNumber="2">S . Kenitz and T . Small / Medical Veritas 3 ( 2006 ) 962 â?? 970 963 This is awful . So that was at a year - and - a - half old ? didnâ??t know how to do that , and I remember so vividly them going and getting counseling and saying that I needed to seek That was at a year - and - a - half old , and what was so heart - counseling then â?? I was being a bad mom because I was holding breaking about it was that I remember the day so vividly when onto hope and possibility for one child , but they felt that I was they came in â?¦ it was a team of probably six to seven special - taking it away from my healthy daughter . And so it was very ists and they said , â?? You know , we know whatâ??s wrong with difficult . I had a very big challenge not only with the medical field , Gracie . â?? And I remember feeling so relieved and I remember but I did have a lot of family and friends that felt that what I almost like jumping up and down because finally we knew what was doing was not right . And thatâ??s very difficult when youâ??re was wrong with Gracie and in my mind , because we knew what put in a position where even your closest family members and was wrong with her , I automatically thought that we had a your friends are saying â?? enough is enough . â?? prognosis , then that all of a sudden we had the diagnosis . We now could have a prognosis and we can fix it and we can go Well letâ??s jump ahead and talk about Lily for a moment . Is home and we can be a family . But unfortunately for us in the Lily pleased to have Gracie around now ? same breath that they told us what Gracie had , they also told us that there had only been four other children in the world cited Oh my God , she is elated , and Lily is just an exceptional with this form of mitochondrial and they had all died before the child in her own right and just is wonderful . I mean she and age of two . And they gave us this news when Grace was a year - Grace are connected like no two sisters Iâ??ve ever seen and that and - a - half old . is something I had always hoped and dreamed for â?? that Grace Thatâ??s terrible . Well , tell us about mitochondrial cytochrome would get that connection with Lily , that they would connect at C reductase . What does it do ? some point because that maybe would give Grace the strength to hold on and the strength to say â?? wait a minute , my sisterâ??s a What mitochondrial does is that when you have a mitochon - little different than me and I want to do what sheâ??s doing . â?? So it drial disease you lack the energy producing cells in your body . would give her that little extra push to do more , and Lily is just Everybody has to have the mitochondrial cells in order to sur - incredible . Sheâ??s very kind and loving and she has never , ever vive , and what was happening with Grace is that in the mito - felt threatened by Grace , which is very difficult when youâ??re in chondrial chain she had deficiencies and there are six chambers this situation and you have a child with special needs , no matter and every one of them had deficiencies . However , her form what that special need is , itâ??s a fine balance â?? making sure that with the cytochrome C reductase is the rarest of rare . Most kids your healthy child is not left behind . And itâ??s a fine line that we have an oxidative form that can be helped . I mean the children parents walk to really know how to do that . I look back and certainly do not live long lives , they donâ??t live to be in their there isnâ??t anything that I would change . I feel that I did every - 20 â?? s or 30 â?? s from what I understand , but they have a better thing that I could do at the time given and looking at Lily today chance and a better outcome . I wouldnâ??t change anything for the world because sheâ??s in - With Grace everything that is produced in those chambers â?? credible , not only with Grace , but other special needs kids . Grace wasnâ??t getting on her own . Her body wasnâ??t able to pro - So when Gracie was three - years old , was it the state or hos - duce that . So what they did , they overloaded her with a lot of pital or practitioners who , in essence , would you say suggested different vitamins and hoped that some of them would cross - that life support be discontinued ? over the barrier and get to her body and start picking up doing . But basically what happens is your body starts shutting down . Yes , we were in the hospital and we had physicians go in Grace started to have a lot of problems with being able to regu - front of like a board and say that they were no longer going to late her own temperature . She wasnâ??t able to hold her head up do any life - altering measures and for Grace at this point , she at age one . She wasnâ??t developing . She was having difficulty had a PIC - line in that was giving her total protein nutrition â?? eating . She was having difficulty swallowing . And it was basi - that was what was keeping her alive . She was needing food in cally , one by one , her body would shut down and they eventu - her body because she was not able to eat on her own and the ally tell you â?? enough is enough . â?? They told us when Grace was feeding tube just wasnâ??t enough to sustain the weight so that her three - years - old that â?? enough was enough â?? and that we needed body organs wouldnâ??t start to shut down . to take Grace home . They werenâ??t going to do anything more â?? life altering things â?? because Grace was so sick and they just How much did she weigh at 3 - years old , Shannon ? felt that it was time that as a family we let Grace go . â?? They made that suggestion to you ? That as a family , you Three - years old she weighed approximately between 12 and should let Grace go ? 15 pounds . Yes , they told me , I remember vividly . I understand that if Was she still having seizures and â?? you look at the science end of things , no other child had lived Still having seizures with four different seizure medicines . past the age of two . However , Grace had ; by this time she was So it wasnâ??t even as if they were controlling the seizures . By all 3 - years - old . And was she a 3 - year - old living a life that a 3 - year - means they were a lot less , but she was still having break - old should live ? No , but she was still living and for me to take through seizures with being on the four different medications . my child home and just let her die was not an option for me . I doi : 10.1588 / medver . 2006.03.00112</Page>
    <Page pageNumber="3">S . Kenitz and T . Small / Medical Veritas 3 ( 2006 ) 962 â?? 970 964 Was she on other medications as well ? that is , yes , maybe I did need to go to counseling at that point ; however , the one time that I did choose to leave Graceâ??s bed - Yes she was . She was on a lot of different GI medications . side and go down to the cafeteria to get something , Grace She was on a protocol for the mitochondrial , it was about 17 coded . If Grace died , I needed to be the one that she was with . I different vitamin therapy medications along with all her seizure wanted her to feel me . I didnâ??t want it to be in a cold hospital medicines and her GI medicine and then she did take things bed . I needed to be the one that - even though she couldnâ??t see - because she had a lot of blood issues at that point . I could hold her to my chest and she would at least feel my love and feel my tears and know that it was okay to go . And so after Did she still lack eyesight ? that first time of leaving and having her do that and almost los - ing her , I didnâ??t want her to die alone . So I could never get my - She did . By this time we had gone to New York Presbyterian self to leave again . and we saw a neuro - ophthalmologist , and I remember him tell - Absolutely . I understand . So , obviously , Shannon , you did ing me â?? for some reason the whole vision thing was very hard not accept what the practitioners told you , even after they said for me â?? I remember her main ophthalmologist back in Wiscon - that the other rare cases didnâ??t live past two , is that correct ? sin saying to me later on in Graceâ??s life , â?? I remember in your room , Shannon , and it was as if I told you that Grace was blind , That is correct . but you turned to me and said , â?? will Grace ever drive ? and I knew that you didnâ??t understand what I just told you . â?? And So you didnâ??t accept what the practitioners were telling you . when I went to the New York ophthalmologist and I asked if Had you tried all kinds of other therapy at any points in addi - there was anything that could be done , he told me that there tion to the medications ? really wasnâ??t â?¦ That she had complete optic atrophy , that she was blind and I needed to accept it and try to work on the fact I had . I mean we had Grace going through speech , she was that maybe she could do something cognitive like Braille , but going through vision therapy in the hospital , occupational ther - they thought that even that was a far reach for Grace because apy , physical therapy . She was doing all the traditional types of not only was she blind , but she had a lot of cognitive problems , therapy that we could possibly think of . We were doing differ - and if you donâ??t understand how to learn Braille , then youâ??re ent types of brain testing on her and to see if there was any ac - not going to be able to do Braille . So she was still blind at this tivity where we could focus on . We tried everything tradi - point at three years of age . tional â?? what they would consider to be traditional â?? we tried it Was she at any point , Shannon , considered to be in a vegeta - all . tive state ? So what did you do and where did you go ? Yes , and thatâ??s a funny word . They use that word not only I looked into a therapy called hyperbaric oxygen therapy and for people that are in a vegetative state in comas , but they use looking back on it , I researched hyperbaric therapy for over a that word for kids who lack development . When Grace was a year . I had heard about Momâ??s United for Moral Support and it year old and she wasnâ??t able to sit up or hold her head up , or was for children that had cerebral palsy and autism and trau - wasnâ??t able to be in a crawling position , they considered that a matic brain injury , but Grace had a lot of those same character - vegetative state , or they say to you â?? this is what your child is istics . And I felt as if maybe it would help . But all of my main - going to be , sheâ??s going to be like a vegetable , sheâ??s going to be stream physicians were telling me it was a waste of my money in a vegetative state where she looks through you and not at and my time and I needed to let go , but finally when she was you , she doesnâ??t hold her head up , she doesnâ??t sit up , â?? and I three - years - old and they said â?? weâ??re not doing anything more , â?? think that thatâ??s a really awful word period to give to anybody . they pushed my hand and we tried hyperbaric therapy . We went But when you give it to a child like Grace â?? who at that time to a clinic and we started treating and it was amazing . they didnâ??t even know what was wrong with her â?? and to label We first went to Joe DiMaggio Childrenâ??s Hospital and we her in that condition was just something that as a mom I had a SPECT scan done of her brain and the radiologist there couldnâ??t accept . I couldnâ??t accept that they were telling me that said , â?? you know her brain is lacking in so many areas , â?? that he my daughter was going to live in this vegetative state . I remember a physician literally had a pair of keys and he still told me not to waste my money and to go home ; but we had rattled them and after rattling them , he dropped them and he raised the money to try it , and so we wanted to go ahead and try said â?? thatâ??s your daughter â?? this is your daughter â?? and then he hyperbaric therapy . And we did and it was amazing . After about threw them on the table and they laid still and he said , â?? This is 10 treatments , I felt I saw something after the first treatment . your daughterâ??s future . â?? She just seemed a little different , but you have to realize this was our last thing . We didnâ??t have anything left . I went there That sounds cruel , you know ? thinking , â?? If this doesnâ??t work , then I do need to let Grace go . â?? And so I was putting a lot of hope into something that I had no It was very cruel . But I think that they were trying to get a idea if it was going to work , and after about 10 treatments point to me . There was a time when I hadnâ??t left the hospital for Grace started to reach and she started to track , and after 40 over four months . I didnâ??t go see daylight , I didnâ??t get out into treatments we went back to that same radiologist and did a re - the sun and I didnâ??t leave Graceâ??s bedside , but the problem with peat SPECT scan on her and it showed dramatic improvement . doi : 10.1588 / medver . 2006.03.00112</Page>
    <Page pageNumber="4">S . Kenitz and T . Small / Medical Veritas 3 ( 2006 ) 962 â?? 970 965 And what kind of chamber pressure and concentration of And I decided this is where we want to be , that we need to con - oxygen did Gracie use ? tinue with hyperbaric oxygen therapy . No matter what we have to do , this is where we have to focus our resources because it Boy , weâ??ve been on the whole line of it with Grace . We was changing Graceâ??s brain . Not only were we seeing it clini - started at 100 % oxygen in a steel chamber . And so Grace went cally , but now they were seeing it scientifically on the scan . into a steel chamber and had 100 % oxygen delivered to her . And so we did hyperbaric therapy and it totally changed our Then after we had so many treatments of that , then we went familyâ??s life . into a maintenance treatment program with Grace where we Thatâ??s wonderful . And letâ??s go back a little bit for our listen - used a mild hyperbaric chamber , but we still followed the same ers who donâ??t know : Could you please explain what a SPECT protocols . And now she does both . Now she does mild hyper - scan is and also what , in summary , is hyperbaric oxygen ther - baric and she goes to a center three times a week and gets a apy and how physiologically it works to help the patient ? higher pressure treatment . What conditions does hyperbaric oxygen therapy help ? I A SPECT scan is an actual scan , unlike what the traditional - - know you mentioned a couple earlier , but there must be more . now thereâ??s new MRIs , but the traditional MRIs and CAT scans will actually show masses or lesions , they show if you have an Boy there are . Thereâ??s many that it helps . Any type of neuro - abnormality . The SPECT imaging is a scan just like that where logical indication â?¦ whether it is stroke or it is chronic fatigue , your child would go into a machine and it circles around the lyme disease ; and then in pediatrics you have cerebral palsy , brain , but it actually traces the flow of oxygen . So unlike the traumatic brain injury , you have autism , you have ADD , MRIs and the CAT scans , the SPECT scan can actually show ADHD , bipolar . You have kids like Grace with mitochondrial the flow of oxygen , where it decreases and where there actually disorders . You have the traumatic brain injuries from car acci - is none . And so itâ??s able to show you that your child is lacking dents . Anybody that has any type of neurological indication oxygen to certain areas of the brain that then may be able to be where they may have had a lack of oxygen , whether it was from helped by administering hyperbaric oxygen therapy . What hyperbaric oxygen therapy is , consists of going into a a birthing incident or whether it was from a car accident or what pressurized condition which then increases the oxygen . So the incident may be , hyperbarics can help with that . By no thereâ??s different forms of chambers that you can go into , but the means is hyperbarics a cure , but it is an incredible adjunct ther - laymenâ??s term is you go into a chamber and it is pressurized â?? apy that is noninvasive that really makes a difference with neu - you are giving oxygen . What is critical isnâ??t so much the oxy - rological patients . Vision is another one . A lot of ophthalmologists are refer - gen itself , as much as the fact that youâ??re going under pressure . ring to hyperbarics because of the visual improvements with And so itâ??s really important that when you get hyperbaric ther - kids that have cortical visual impairment â?? with adults as well . apy , that youâ??re going into a chamber under pressure and that And then thereâ??s things such as the traditional , which would be even if you go into what they consider to be a mild hyperbaric like if you had a wound or carbon monoxide poisoning or the chamber , youâ??re still getting an increased flow of oxygen be - indications that actually are covered . Diabetics use hyperbaric cause of the pressure . And Grace would go into these chambers , therapy . MS patients use hyperbaric therapy . ALS patients , and we did therapy twice a day , six days a week for the first Parkinsonâ??s and so itâ??s across the board . With hyperbarics it can year of Graceâ??s therapy . And so it would be like going into a chamber , lying down , really make a difference for neurological patients . depending on what type of chamber youâ??re in ; sometimes you Now , do all of the commonly used forms of hyperbaric â?? high wear a hood , sometimes you wear a mask , sometimes you just pressure and mild â?? help all of these conditions that youâ??ve just lay in the chamber and go under pressure with nothing added . mentioned equally well , or do you think that there are different So thereâ??s different forms of hyperbaric therapy , but for the lay indications for different pressures or concentrations of oxygen person thatâ??s basically what it means : it is getting an increased at different times ? amount of oxygen under pressure . So Gracie did this two times a day , six days a week - - did you Well , I think that in my experience â?? Iâ??ve been in this field say for the first year ? now for four years â?? I believe that across the board they all help . I think that the key is going to be able to find what is best For the first year . for the individual patient , and this is a question that when I go across the country speaking to parent support groups that I get , How much time each session on those two times a day ? you know , â?? Should I go into a mild chamber versus a high pres - sure chamber ? Should I be at 1.3 ? Should I be at 1.5 ? 100 % or She went into the chamber for one hour each time . So weâ??d 40 % ? â?? And what I normally do to show parents especially be - go in the morning and it took us about five minutes to â?? get to cause my heart lies obviously in the pediatric world because of pressure , â?? we would treat for one full hour and then we would my child , I bring some parents who have all done hyperbarics â?? come back , â?? and then we took four hours off in between the with their children and I have each one of them speak and they two treatments , and then we went back for our second treat - all say the same improvements . And then after theyâ??re done speaking , I then point out to the ment , but they were each one hour long . audience that every single one of these parents did hyperbarics doi : 10.1588 / medver . 2006.03.00112</Page>
    <Page pageNumber="5">S . Kenitz and T . Small / Medical Veritas 3 ( 2006 ) 962 â?? 970 966 Wow . in a different way . One of them did it in a mild hyperbaric unit in their home with a concentrator , the next did it in a clinic at a Some of them will say she is cured and they wonâ??t say that 1.3 with 100 % oxygen , another did at 1.5 with 100 % oxygen , she doesnâ??t have it , but it is in the 80 % range and to me thatâ??s and they all had the same improvements . And now weâ??re get - normal . And it says right on her sheet , that no abnormalities ting more into the research end of it â?? especially in autism the found in mitochondrial . key is going to be able to find what the safest pressure is for autistic children . And we do have some of the leading authori - Wow . ties in autism right now doing research to find that answer out for us . So as far as Iâ??m concerned , I do feel like it saved Graceâ??s life Well thatâ??s promising , Shannon , and thatâ??s encouraging to literally and I will continue to do this because I know that it is hear . You mentioned that youâ??re not â?? and for lack of a better what she needs in order to thrive and to be a normal seven - year - word â?? Iâ??ll say â?? promoting â?? this as a cure , and thatâ??s fine . Peo - old little girl . ple can , you know , use this as an â?? adjunct therapy , â?? but in And she graduated , she went to her kindergarten graduation Gracieâ??s case , you are sure that this helped her , are you not , correct ? because this was the only thing you changed ? Yes , she did . Last year we put her in school which was very Yes , and in Graceâ??s case it saved her life . It saved her life traumatic for our family , to say the least . I have never been and I have no doubt about that , and thatâ??s why I can so publicly away from Grace , but I saw she was better and that maybe she speak about it because we made sure that when we did hyper - did need to be around children and , being a psychologist , I barics we didnâ??t change anything else in Graceâ??s life . We didnâ??t knew that was an incredible component of Graceâ??s rehab ; and increase any medicines , we didnâ??t take any medicines away we put her in a school , we put her in a normal kindergarten until after we got into hyperbarics when we could get off the class with an aide and it was the best thing that I could have seizure medicines finally , but the only thing that we altered in ever done . All the fears I had about kids teasing her , being in a her life was we gave her the hyperbarics . And we have been in wheelchair and having , you know â?? cognitively not being a a situation where Grace wasnâ??t around hyperbarics , we took her kindergartner â?? it was the best thing that I could have ever done out of it for awhile because of obvious financial reasons and so for her and for me is to put her in a kindergarten class with forth , and Grace started to decline ; but you have to remember other kids her age because she started to thrive even more . that Grace has a terminal diagnosis and continued to die with her mitochondrial . So Grace probably will need hyperbarics for Thatâ??s great . And you mentioned a wheelchair , but she the rest of her life , but if oxygen is my drug of choice , I am the started walking recently didnâ??t she ? happiest woman in the world because we are off all of her mind - altering drugs as I would call them . All her seizure medi - She did . It has been now five weeks . I was away on a speak - cines we are off and her last two EEGs have been completely ing tour , which I do , like I said previously , for moms and spe - normal . We are off all of her GI medicine , her feeding tube is cial needs kids â?? I talk about hyperbaric therapy and how it can gone , sheâ??s no longer blind and sheâ??s thriving . And I know that help â?? and I came off the airplane and came down the escalator the only thing that is doing that is the hyperbaric therapy . and I remember seeing a ton of cameras , but I was thinking â?? oh , Thatâ??s wonderful . And her seizures have stopped ? my God somethingâ??s going on , â?? never thinking that it was in relation to me , and I started to look at them . I started to recog - Her seizures have stopped . Weâ??ve been seizure - free for over nize faces , and all of a sudden they kind of cleared a path and I two years â?? without any medication . . saw my daughters Lily and Grace . And Grace got up and walked to me for the very first time in her life without her Thatâ??s wonderful Shannon . And how are Gracieâ??s lab tests walker , her braces , or a teacher holding her , or somebody hold - now ? You mentioned two of her EEGs , has she taken other lab ing her . She just walked independently right to me . tests ? Is she considered in remission ? Thatâ??s wonderful Shannon . So , is she considered to be in Before she had a big problem with her lactic acid , which is remission now ? now normal . Sheâ??s had a lot of problems with her H &amp; H ( hemat - Thatâ??s what we would say that she is in , yes . And some doc - ocrit and hemoglobin ) where now she hasnâ??t had a blood trans - tors tell me to continue doing what I am doing and the only fusion of any kind in over three years . thing Iâ??m doing is hyperbaric oxygen therapy so I will defi - Wow . nitely keep doing that therapy . Her last muscle biopsy which is what is the most incredible , And oxygen is considered as medicine ? and weâ??re going to be doing another one in the next couple Yes , it is . Oxygen is a drug , therefore you need a prescrip - months â?? but her last muscle biopsy , which is what tells you tion in order to have this therapy . When you go to a clinic you where your mitochondrial level is â?? her last one came back nor - mal . doi : 10.1588 / medver . 2006.03.00112</Page>
    <Page pageNumber="6">S . Kenitz and T . Small / Medical Veritas 3 ( 2006 ) 962 â?? 970 967 will need a prescription from a physician stating that you can need for the rest of her life â?? we are now on a limited schedule undergo hyperbaric oxygen therapy because it is a drug . for that . We donâ??t need intensive like we used to need it , and then you think of all the medications sheâ??s no longer on , youâ??re Well let me recap some of the wonderful accomplishments thinking about all the hospital stays , the surgeries , the blood that Gracie has had as a result of your going forward and help - transfusions , all of that is gone . And hyperbarics , in this country you can get hyperbarics ing her with hyperbaric oxygen therapy , Shannon , and please , anywhere between $ 100 - 125 an hour up to $ 250 an hour . And correct me if Iâ??m incorrect about anything or add anything that that is nothing compared to what we paid in hospital bills . I may have forgotten , okay ? Could be less even some places ? Okay . Oh , in some places it can be less and then if your doctor Okay . So Gracie crawled , she started to be able to feed her - feels that you should have a hyperbaric chamber , they can write self , she talked , she walked with a walker and now most re - a prescription for you to have the mild unit in your home . And I cently she walked independently , she went to her kindergarten know the most expensive one of hyperbaric units are I think graduation , she recovered her eyesight , she gained weight , she around $ 22,000 , maybe $ 23,000 , and thatâ??s it . You have your stopped her medications and her seizures stopped . chamber then and thatâ??s all youâ??re spending . So of course it can That is correct . But most importantly to a parent and I canâ??t be so much less expensive for insurance companies and state - say this enough , is that my daughter â?? knows . â?? Youâ??ve heard me aided programs when these kids go on disability to implement talk about Grace always looking through me instead of at me , hyperbarics than to do what theyâ??re doing . my daughter now looks at me . Her eyes look at me and she en - Right and of course as you said theyâ??re looking at the bottom gages and she knows that I am her mom , she knows that her line versus health and of course the childâ??s health and quality sister is her sister and that means more to Lily and me than any of life is always the most important consideration along with of the other accomplishments that she has gained with hyper - the quality of life for their family . But in addition to that , Shan - barics . The fact that she knows us , is what is so essential to Lily non , I would say that theyâ??re looking at the bottom line now and me and to our family . versus the bottom line down the road . You know theyâ??re kind of Yes . Well , Shannon , can you tell us the bills for hyperbaric looking with a very narrow gaze at the bottom line . versus what the hospital costs were for Gracie for zero - to They really are . I mean my daughter three years ago , her three - years old , I know that the most important thing isnâ??t the case was heard in a Congressional hearing and afterwards one monetary concerns just like youâ??ve just described , but what is of the senators came up to me and said , â?? Do you know the this in comparison ? ramifications that this could mean for long - term ? â?? I said , â?? abso - Hyperbarics is nothing in comparison to what they were pay - lutely . â?? Do you realize how much money is spent on a stroke ing . Our private insurance dropped us when Grace was a year patient in rehab 10 years out or these kids that have cerebral old , so Grace went on full disability , but her medication bill palsy or even our autism population , when youâ??re looking at alone , her vitamin bill alone for the state to pay is over $ 4,000 , long - term , youâ??re looking at therapy costs , youâ??re looking at and when you added all those medications , you added the feed - special aids in schools . If you look at long - term , hyperbarics is ing tube , every little thing costs money right down to the tubing viable and a smart financial way to go . And I think that itâ??s go - for the feeding tube , to the syringes that we had to have , and the ing to just take more education and getting to the right people to hospital was paying over $ 100,000 a month and thatâ??s on an show them that weâ??re going to have a crisis in the Medicaid and easy month . When Grace was in the hospital â?? which she was Medicare system down the road to start with . This is a way that predominately for the first three years of her life â?? she maybe it can certainly help alleviate that future cost and that future was home a couple months here and there , not all together , but damage thatâ??s going to happen . I just think itâ??s getting the in - if we look at over the three years we had maybe 90 to 100 days formation to the right people and by all means they need to look where Grace wasnâ??t in some hospital or clinic . And when you at long - term , because every child that is special needs , their look at that , her bills were in the millions . long - term cost is an incredible amount of money . And hyperbarics compared to that is nothing . And I donâ??t Yes , and you would think that ( I hate using this word with understand why they canâ??t see that . Why they canâ??t see that if regard to each child whoâ??s precious ) theyâ??d want to reduce the hyperbarics can get these kids off of these medications , not just caseload per practitioner â?¦ . say in a hospital setting you would financially , but these medications end up causing problems to think that theyâ??d want to alleviate some of that for the medical our children â?¦ unfortunately thatâ??s the way that business is and systems and social service systems and things like that . thatâ??s the way insurance is , thatâ??s the way state aid is â?? is that they look at the bottom line rather than the health . And I donâ??t You would think that ; and coming into this , Iâ??m not a physi - understand why they donâ??t , because hyperbarics is very reason - cian , Iâ??m a mom . You know I say Iâ??m a mom on a mission be - able . Theyâ??d be better off even to purchase chambers for these cause I know that this therapy can help so many families . I families and they still would have 90 % less costs than having know so many families that did lose their children that maybe the children continue to do what theyâ??re doing . Graceâ??s physical they could have had them longer , and to us families that have therapy , her OT , her speech , her vision , which she was going to doi : 10.1588 / medver . 2006.03.00112</Page>
    <Page pageNumber="7">S . Kenitz and T . Small / Medical Veritas 3 ( 2006 ) 962 â?? 970 968 special needs , quality of life is everything . If we can get rid of been incredible for these parents and then the cognition . And one of their disabilities , thatâ??s a huge thing for us , but itâ??s such the fact that they pull up in the driveway and the mom says a fine line in the medical field . I havenâ??t quite figured it out yet , â?? Papa Dave , â?? who is the technician at the clinic and the chil - whatâ??s it all about . Does it really come down to pharmaceutical dren say , â?? hyperbaric treatment . â?? Theyâ??re able to put things companies versus wanting to make sure â?¦ . I mean if for some together and the teachers are calling in and saying â?? wow , the reason , you know , hyperbarics or any other type of therapy al - kids are being more cognitive at school , their concentration leviated having to be on drugs for so many people , then whatâ??s levels â?¦ â?? parents are finally having children go through the going to happen in that industry ? That industry brings a lot of night not having accidents in the bed or theyâ??re getting rid of money into the country and I just havenâ??t figured it all out what their stimulation machines and the children are now having exactly itâ??s all about . But as a mom â?? all it should be about is bowel movements on their own . And itâ??s been just incredible . I went to a fundraiser of this little girl with a very sad story . health . The money should never ever come into play . And thatâ??s Her mom bled during birth , the little girl was born basically why I took this job with the International Hyperbarics Associa - with no blood and she was born not breathing and on the ninth tion ( IHA ) â?? is that I never want a parent not to do hyperbaric minute of trying to resuscitate her , they said they were going to because of money . That should not be an issue . If that is an is - do one more minute . Well they got her and they saved her , but sue , then contact the IHA , I will help you get it . It is a shame they told the parents that obviously under the conditions she that we do not get a therapy , especially a therapy such as this was not going to be anything , told her the same thing about the that is noninvasive , itâ??s non - harmful , itâ??s not like going into a baby would be in a vegetative state the rest of her life , that she surgical room and Grace having a brain biopsy done , and if itâ??s suffered severe brain trauma , and it totally tore their hopes and something youâ??re looking into , money should not be an issue as dreams apart for their daughter . And they started hyperbaric to why youâ??re not getting it and thatâ??s my goal . My goal is that treatment , theyâ??ve had 78 treatments and now this little girl who every person that looks into this should have an opportunity to had absolutely no chance in life is lifting up her head com - try it regardless of their resources available to them , and thatâ??s pletely on her own , her dSATS and oxygen when sleeping are what the IHA does , we help get that done for those families . completely gone , she is stronger , she can grasp and sheâ??s track - Thatâ??s excellent Shannon . Yes , our children are beloved ing . And they have now done a fundraiser to continue doing flesh and blood , theyâ??re not income - generating - units . hyperbaric therapy because they have a child that laid there and was not doing much and now is doing , and the only thing they Theyâ??re not . changed in their daughterâ??s life was hyperbarics . And I get letters like this from people across the nation to Well , are you at liberty to share any other remarkable suc - the IHA that call me . And right now you do see a surge of it cess stories such as from patients in the Wisconsin clinic ? with autism . I probably would say about 75 % of the calls and the letters I am getting are from families whose children who Oh , absolutely . The Wisconsin clinic is being setup as the have been diagnosed with full autism or on the spectrum or standard of care clinic . Itâ??s not only a hyperbaric clinic , but itâ??s have ADD , ADHD and theyâ??ve been doing hyperbaric and the an educational clinic where parents can come once a month and improvements have been incredible . Itâ??s wonderful when you physicians are brought in from around the country that special - hear these parents say , â?? I heard you talk Shannon , I know what ize such as in autism or cerebral palsy or whatever the specialty you meant when you said your child looked through you and may be , gluten / casein - free nutritionists , so forth . But we have now theyâ??re actually looking at you . Itâ??s the most incredible had incredible improvements at this clinic in Wisconsin . feeling , or when your child for the first time instead of just say - They shared with the IHA some testimonials and I actually ing like â?? ma â?? says â?? I love you mommy â?? and is engaging and is happen to have them in front of me because they gave them to aware of your surroundings . We have a mom who said she considered her child a runner . me because weâ??re going to be putting them into the next IHA The minute they got out of the car , he would be gone , having newsletter . But we have probably 10 of them that are autism or absolutely no idea about the danger that lay around him . And on the autism spectrum and the stories have been incredible . how traumatic for a parent to know that they have to get over to We have a little boy here who started hyperbarics , heâ??s five - that side real quickly and to make sure they guard their child years - old and at about a year - and - a - half he had a seizure that because they have no idea that another car coming could hurt had left him with reduced central vision and had no function in them . Now he gets out of the car , he waits , he takes the hand , he the right arm and he has had only 17 treatments to date and he knows not to go in the street , a car can hurt you . Those are the is already starting to speak and he is saying words such as things that when parents live with these diagnoses every day â?? papa , â?? and instead of saying â?? ahdah â?? for â?? daddy â?? , he is now they not only impact the child , but they impact the family unit . saying â?? daddy â?? . Heâ??s saying the word â?? purple , â?? which he never And hyperbaric therapy is changing the family unit and thatâ??s could do the â?? Pâ??s â?? before , heâ??s able to move much better , heâ??s what itâ??s all about â?? making families become more of a family . being cognitive â?? that is the biggest thing that we see is with the What most people may take for granted , parents of special cognition , especially in our autism patients . We have a two - and - a - half - year old autism child who really needs kids â?? no matter what the need is â?? donâ??t take that for never spoke much . He maybe would utter here and there , but granted . Anything that we can grasp onto to be what we would now is actually being able to say â?? mama letâ??s go â?? or â?? I would consider to be normal in a family is incredible . And changing a like to ride in the car â?? instead of just saying â?? car â?? and that family unit gives people so much hope and so much possibility , seems to be the gist of it with autism â?? the speech is what has and it brings people together . doi : 10.1588 / medver . 2006.03.00112</Page>
    <Page pageNumber="8">S . Kenitz and T . Small / Medical Veritas 3 ( 2006 ) 962 â?? 970 969 When you have special needs children , itâ??s incredible how yet at the same time you are getting the hyperbarics under the high the divorce rate is . I feel that somewhat hyperbarics im - direction of a physician and thatâ??s what I preach all the time . pacts that and brings people closer because it changes the fam - That is so nice giving parents a break . ily unit . Itâ??s allowing them to be more family . So thereâ??s a lot of ramifications in the positive end of hyperbarics , not only with Iâ??m able to do that through the IHA member clinic . Then helping the child , but helping the family become a stable family weâ??re also staring another program up â?? where I probably will unit . be announcing it in the next couple months â?? but itâ??s another Yes , and how do parents find a reputable hyperbaric oxygen program like that , where if somebody wants to purchase a therapy clinic or other provider ? chamber , theyâ??re not sure how theyâ??re wanting to do it â?? if they get the chamber through a certain manufacturer and so forth â?? What I would highly recommend is what we have done they are allowed to buy these coupon books and then these cou - through the IHA . The International Hyperbarics Association is pons are redeemable for hyperbarics in a variety of hyperbaric a nonprofit association . Not every person that has a hyperbaric clinics around the country , because my goal is to have that par - chamber can become a member of the IHA . There are many ent do their initial set under the direction of a physician . And you hear all the time that â?? hyperbarics isnâ??t rocket sci - clinics that we have turned away because we felt that they were ence â?? and that â?? we can do this and so forth , â?? but you know inappropriately using hyperbaric therapy . We definitely are not what ? It needs to be respected , and oxygen is a drug and things a regulatory board , but we do have an incredible physician ad - can happen . Your child can have ear discomfort and weâ??re par - visory board on hyperbaric therapy and we know what the stan - ents , weâ??re not physicians and we need to remember that . We dards are and we do expect a higher standard . The other thing is need to remember that we might not necessarily agree with our with IHA clinics , is that we do ask them to keep their prices at a physicians who many times I have fired doctors left and right price the families can afford , and then by being an IHA clinic , on Graceâ??s team . Iâ??m the first one to let a doctor go . However , weâ??re able to fund treatments . So if a family canâ??t afford hyper - Iâ??m also the first one to respect the fact that oxygen is a drug , barics , they can sometimes apply through the financial aid pro - that it needs to be treated like one and that you need to go and gram at the IHA and receive funding , and we pay the clinic you need to have it under a direction of a physician first and directly and then weâ??re able to work with that clinic and say , then do it . â?? this personâ??s going to need about 40 or 80 treatments , but ob - So hopefully with this program , it helps alleviate that . It viously they canâ??t pay $ 120 an hour , even $ 100 an hour . â?? So I helps the fact that â?? okay we did go , we saw no complications . â?? can get them to come down to $ 50 - 60 and hour and weâ??re able You do have to have a prescription to purchase a chamber . So I to monitor it . So I would highly suggest going through an IHA have talked to physicians that were writing scripts before the clinic . Like I said , itâ??s not everybody that has hyperbarics is an IHA children had the opportunity to have hyperbarics administered member clinic , and it doesnâ??t necessarily mean that those peo - under the direction of a physician first . These physicians did ple that arenâ??t , are not necessarily a good clinic . Itâ??s just there that because they knew hyperbarics worked , but they didnâ??t are so many people getting into hyperbaric therapy right now have a hyperbaric chamber in their clinic . Well , I solved that that we just canâ??t get to all of them or they contact us , and be - problem for them . I got them a chamber for their clinic . And so fore you become an IHA member clinic , one of us has seen the Iâ??ve been able to implement hyperbarics in a lot of different clinic or has gone to the clinic or we know the physician and we clinics , especially a lot of the DAN ! doctors and put them on a know that theyâ??re following the proper protocols as we feel the program where they can afford to have a chamber in their clinic protocols are , and that is following what has been done for the to start these kids out with and then write the script if that is last 20 years in neurology . what they feel is medically needed for that child . The biggest thing I would get from parents is â?? itâ??ll be So I definitely highly recommend parents going through the cheaper for me just to go purchase a chamber . â?? I do not recom - IHA , contacting the IHA clinic , because not only is it going to mend that . Iâ??m very vocal about that . I do feel that home units be beneficial for them physically to have their child seen , have are eventually maybe necessary and if a doctor writes a pre - them go into a chamber with somebody putting them in , moni - scription for it , then I feel that thatâ??s okay . But I do feel that you toring , even teaching them how to use a chamber and then if the need to do hyperbarics first in a clinical setting : that it needs to doctor feels , then they can get it â?? not only do they have it be under the direction of a physician . And what was happening physically , but it also will help financially because out of the especially in the autism world , we seem to get a little bit of re - monies spent at an IHA clinic , thereâ??s a certain percentage that sistance where the parents are so educated and so in tune with will be deducted from the cost of the chamber . their children that they state , â?? You know what ? Weâ??re just go - All right , I really appreciate that point , Shannon , facilitat - ing to get the chamber . â?? So we kind of alleviated that problem . ing , giving parents that monetary break - - thatâ??s really nice and , What I did is , I went to the manufacturer and I said , â?? Listen , yes , I agree . I felt more comfortable going through a provider this is a problem . I donâ??t want these parents to just go purchase first , going through a practitionerâ??s office at first , and I would a chamber , can we work something out ? â?? And so we do have a feel more comfortable , of course , seeing how to properly oper - program that if you go to an IHA clinic and you spend so much ate the equipment . money at that clinic in hyperbarics , that then can be taken off the price of a chamber . Therefore youâ??re not out any money and doi : 10.1588 / medver . 2006.03.00112</Page>
    <Page pageNumber="9">S . Kenitz and T . Small / Medical Veritas 3 ( 2006 ) 962 â?? 970 970 Thatâ??s exactly right , and you need that . At the end of the day end of the day , physicians are only physicians . Everybody can weâ??re moms and dads and , yes , it may not be rocket science and be wrong . If I would have listened to Graceâ??s doctors â?? and you may know how to zip the bag and you may be able to know there were two of her doctors that I felt were family â?? I know how to do all those things , but at the end of the day , itâ??s still that Grace would not be here today â?¦ that she would be in your child , itâ??s still medical , and it is much better for not only Heaven , and I believe that we at some point take control and you as a family , but for the medical field in general to have know that our gut is right . That never to give up hope . If you your child first be seen under the direction of a physician . The give up hope , you donâ??t have anything and thatâ??s just one thing other thing is that it gives us data . These doctors then can fol - that was driven in me , is that if I gave up hope on Grace , then low those children and they collect data . They give that data she was going to die because I didnâ??t have anything to live for . back to the IHA and Iâ??m able to take that data and go to differ - Anything is possible in our world , everything is possible when ent grant companies , go to the NIH and say , â?? Listen , this is the given the opportunity . And so never close doors , get second preliminary data that is coming out of these clinics . We need a opinions , do research , talk to other parents . The IHA has an bigger study . We need you to fund this . We need this to be a incredible networking list of parents that have tried , not only therapy that in five years is just a traditional therapy that is cov - hyperbarics , but a lot of other different therapies and I can con - ered by insurance . â?? And I canâ??t get that done if I have people nect you with those families because I also truly believe that going in a hundred different directions and doing it and not get - talking to another parent in your situation is the best thing that ting any of that feedback . So really it all comes full circle and it you could possibly do because that parent is never going to lead helps future generations and thatâ??s what Iâ??m doing . It may not you wrong . That they donâ??t have any financial interest in what help me right now , but it certainly will help a mom that is in my you do , all theyâ??re doing is telling you what worked for their position five years down the road and I never want them to go child and they give you the most honest and blunt and you re - through what I had to go through . late to them . So just donâ??t give up , anything is possible and look at Grace and look at everything that sheâ??s been through in her Right . Another thing that I appreciated about doing this in a life and she is here for a reason and I believe that reason is to practitionerâ??s office was initially you want to have your childâ??s reach out to other parents to say â?? wait a minute . â?? When every - ears checked . You want to make sure that itâ??s just that theyâ??re , bodyâ??s telling you that thereâ??s nothing you can do , thatâ??s when feeling discomfort and not that anything negative had actually you need to remove yourself and find people and surround happened . So I appreciated being able to be in a practitionerâ??s yourself not only with family and friends that are positive , but office and have my sonâ??s ears checked when he seemed uncom - find those physicians that have an innovative look at life . And fortable â?? to make sure that everything was fine . And his ears there are incredible physicians out there right now that are just were fine . extraordinary doctors , but even more extraordinary human be - ings . So put yourself in a position where you surround yourself Yes , exactly . with that and all the hope and possibility will come your way . Well , Shannon , thank you for that message and thank you for Okay . And what is the most important take home message sharing your time and Gracieâ??s heartwarming and inspiring that youâ??d like to share with all parents today ? story . Gracie is fortunate to have you as a mom , and thank you With all parents I would encourage you that if youâ??re in a for your hard work in trying to get the word out to help other situation that you are with doctors that are giving you no hope children . or no possibility and theyâ??re telling you to go home and to en - Well thank you and thank you very much for the opportunity joy your family as is , that you need to get a second opinion and to be here today . you need to get a third opinion . You have to remember at the doi : 10.1588 / medver . 2006.03.00112</Page>
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