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How Hyperbaric Oxygen Treatment Saved Grace’s Life – Part 3 of an Interview with Shannon Kenitz

Dr Daniel Amen and Tana Amen BSN RN On The Brain Warrior's Way Podcast
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Executive Director of The International Hyperbarics Association, Shannon Kenitz discusses with Dr. Daniel Amen and Tana the role that SPECT imaging plays in hyperbaric oxygen treatment. Shannon shares her story of how SPECT scan analysis allowed her to see the progress in her daughter’s brain, allowing her to heal.

 

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Dr Daniel Amen: My goodness ... Welcome back everybody, we are here with Shannon Kenitz and having so much fun in our, you know, week with kids with challenging needs, Hyperbaric Oxygen, and today we're gonna talk about imaging and one of the parts, of course, I love about your story is when you took Grace to Florida and she was in the hospital, you said "Can she have a SPECT scan?" And they sort of rolled their eyes at you. It's like "Well, what would that tell you?"

So how did you first hear about SPECT and why was that important to you?

Shannon Kenitz: So I first heard about Hyperbarics through other parents and when I started then, to do some research, I saw some of your literature and learning about, you know, you can actually measure blood flow, you can measure different things in the brain and because Grace had that brain biopsy and we knew that there are issues in her brain, I was like "Okay," I wanted to know that Hyperbarics was working, not just from the outside where I could maybe see improvements with Grace but I wanted to make sure that her brain was repairing, because that's the kind of personality I have and then I wanted that evidence ... Basically I did it because I knew that if I had that proof and I felt that that scan, if it improved, that that would be my proof, that I could take it to places and make them change their rules. [crosstalk 00:01:33]

Tana Amen: So your first scan was a before scan.

Shannon Kenitz: Yes, yeah- [crosstalk 00:01:39]

Tana Amen: You wanted it before you started the Hyperbaric Oxygen.

Shannon Kenitz: We did before Hyperbarics then we did it aft- like right around 45 and then we had probably five or six after that as well.

Tana Amen: Oh wow. And did you see steady improvement or did you see that it went forward and backward? What did you see?

Shannon Kenitz: We always had steady improvement and then the last two, pretty much, were the same, which really correlates with the last two muscle biopsies that she had that really just remained in that 85% range. So even though we were seeing it clinically we now-

Tana Amen: But 85% means that your kid went to prom and walked across the stage and went from being taken off life support to having a very functional, high functioning life.

Shannon Kenitz: Yes, and I think that for me also with having the scan done was then there was other things I could be doing too as well and I think that for a lot of people having that peace, it was very enlightening to see that scan in front of me and the doctor say to me "This is why you need to let your daughter go. Look at her brain. You need to let her go." And I'm like okay, well I can't give back five dollars or a dollar worth of pennies to the neighborhood boy scouts that gave me donations, so I'm gonna try it and then getting that second scan and seeing the different colors on the scan and seeing that areas were starting to fill in and things were starting to look better gave me hope, because I saw I actually had an image to look at to say that it can be repaired.

Dr Daniel Amen: Well, and one of the things, see if she would have saw me we would have seen the devastation, but then I have a program that'll actually tell me "How much better can she be?" So I can actually tell you-

Shannon Kenitz: I'm excited about that.

Dr Daniel Amen: The prognosis of ... So for example, I saw a girl from Alaska and she had a door fall on her head-

Tana Amen: Oh that was terrible.

Dr Daniel Amen: And cracked her skull when she was two years old, and she killed her frontal lobes and just had no judgment, beautiful, but when I put it through the program she wasn't going to get better because she killed her frontal lobes. What I needed to do was get her a guardian to help her with decision-making and all the other things.

Tana Amen: So there are times you can tell. Right.

Dr Daniel Amen: But I wouldn't want to tell her parents "Oh, she's going to get better."

Tana Amen: Because then she's in trouble.

Dr Daniel Amen: But with Grace, because I saw Grace's after scan, and if I would have dropped the threshold or put her through my program I would have went "This is a kid that can get better." And 98 times out of a hundred there is a positive prognosis for people, by doing the right thing. And I have a new paper coming out on Autism. And what we discovered, it's not one thing. Stop saying it's one thing because it's not, it's ten different things at least, but for the kids who have low blood flow, either because of an infection or a toxin, it can be improved and Hyperbaric is just one of the safest things to do for them.

Tana Amen: And I think what you've said is really important because people don't know when they come here, what to expect, or when they get a SPECT scan and I think that one of the controversies about it is like oh, we give false hope or ... And that's not true, what we help you do is come up with a rational plan.

Shannon Kenitz: Right.

Tana Amen: We tell you the tru- like we know, like you said, this person has the potential to get better, this person you need to make different plans for, so you need to get a guardian for or whatever and that's really important to know, is that it's not just pie in the sky thinking. It's like you can't change what you don't know.

Dr Daniel Amen: Well think of the alternative, which is not to look, which is to make diagnoses based on symptom clusters-

Tana Amen: And your daughter would not be here with us.

Shannon Kenitz: Right.

Tana Amen: Right?

Shannon Kenitz: Right, if I had not ... And I'm just listening to you talk and reading the papers that you've been sending me and stuff. Like, my next big thing is, I'm getting my 20 year old in here to be scanned. I mean, I carry the gene and she has some little things besides just being a pain the butt 20 year old girl. That, you know, it'd be- It's beneficial to just have that looked at to say, you know, you can see that maybe she's gonna have trouble in these areas because of A, B, C and D. So I think that that's an incredible thing and people are just so lucky to have- [crosstalk 00:06:08]

Dr Daniel Amen: And it's not just for people who are troubled. When you look, you get serious about brain health. So we use it for optimization.

Tana Amen: Yeah, even our 13 year old had that experience.

Dr Daniel Amen: And our 13 year old's awesome, but her scan was so helpful-

Tana Amen: But it explained a lot.

Dr Daniel Amen: Because it showed she really had, sort of and OCD, rigid brain.

Tana Amen: Which used to make me crazy. So I didn't understand why she couldn't just let it go. So seeing that, I'm like "Okay." And so-

Dr Daniel Amen: It's brain-driven behavior. It's not will-driven behavior, so it led us to "Okay, here are the right supplements for you." And-

Tana Amen: And now she takes the supplements willingly.

Dr Daniel Amen: Because she understands it. And her cerebellum, which is a hugely important part of the brain that people just ignore, but was really low in activity and so she was never the kind of kid that wanted to play basketball, tennis or-

Tana Amen: She quit and I used to get mad that she quit. I thought she was just a ... I'm like "You cannot quit stuff stuff." So I was, like irritated that she would quit stuff and what I didn't realize is that she felt incompetent, so she didn't wanna do it.

Dr Daniel Amen: For someone who is a little on the worried side and rigid side, who felt incompetent, it's like they didn't think about it once, they think about it a thousand times.

Shannon Kenitz: A thousand times, yep.

Dr Daniel Amen: And so now she knows it and she knows coordination exercises are part of her plan to have a healthy brain, so she dances-

Tana Amen: Like 15 hours a week, because she knows it helps her. So knowing, seeing it-

Shannon Kenitz: It's so exciting because that's all about the prevention that I was talking about that our country needs to go to. You know, the scanning would be a huge thing.

Dr Daniel Amen: Right and people go "It's expensive," and it's like no, being sick is expensive, having an unoptimized brain is expensive. One of the things we discovered with our special needs kids is some of them had brains that were just on fire. That their brains were working way too hard and I needed to calm them down. Other times they were just devastated and so I needed to really find ways, appropriate ways to stimulate them, but if I didn't look, I couldn't tell by talking to them or by talking to their Mom and Dad, and that's still the standard way kids with special needs are diagnosed with Autism or Non-Verbal Learning Disabilities.

Tana Amen: Seems very archaic. It just doesn't seem ... In this day and age.

Shannon Kenitz: So, just kind of walk me- like, I'm gonna ask you a question, like walk me through this because I get a lot of calls from parents because they know that Grace has had SPECT imaging and they know that I'm a proponent of it. I'm always telling parents that they should do this. And their biggest thing is "Okay, well is a radioactive dye? How do I get my kid to sit still? Do they have to sit still? Are you gonna sedate them?" So what are the answers to those?

Tana Amen: Good question.

Dr Daniel Amen: So it's not a dye, so nobody has an allergic reaction to it like with a CT scan. It's a radiopharmaceutical, so Nuclear medicine has been part of medicine for 60 years, and they get a little bit of radiation, it's about the same as a CAT scan. So if you fall down the stairs, immediately they're gonna do a CAT scan, so hundreds of thousands of CAT scans are done every day in the United States-

Tana Amen: And no one asks about that.

Dr Daniel Amen: So it's not a dangerous level of radiation, it's sort of a normal, medical level and according to the US government, you can have this level of radiation times ten, every year. So it's not a big deal, but the critics will get hysterical about it and I'm like "Well, you don't get hysterical about an abdominal CT, if somebody's got belly pain."

Tana Amen: We did several in a day sometimes in the trauma unit.

Shannon Kenitz: Right.

Dr Daniel Amen: You do have to hold still and that's why the triple-headed cameras are so important, because when we first started we had single-headed cameras and it took an hour to get a scan. You're not gonna get any kid to sit still for an hour. So we can do it in about 15 minutes but you do need to hold still otherwise, you know like if you move when you take picture of somebody it's going to blur the image. For kids who can't, and we have great technologists who are just sweet and loving and kind get most kids to sit still or lay still. You don't go into a tube, nobody gets claustrophobic from it, Mom and Dad can stand right next to you, you can put on cool music. You need to lay still for 15 minutes. For some of our autistic kids or some of our demented patients, they can't, we'll sedate them. Now you can't sedate them before you inject the medicine, because otherwise you get a picture of a sedated brain which is not what we're after. Even if they're screaming it's okay and we don't like it, but we need them awake-

Tana Amen: Sometimes it's necessary.

Dr Daniel Amen: We need them awake and then we'll sedate them so that they can lay still. We have a nurse anesthetist. She comes and does that. We've done thousands of sedated scans. I know some people, they get the diagnosis of Autism, they just automatically sedate them. We're not like that, it's like "Well, let's talk about, you know, can we bribe the child to lay still and be cooperative."

Tana Amen: We're not above bribery.

Dr Daniel Amen: We're absolutely not above bribery, but generally it's an easier procedure so we did, at Stanford, a head to head study with SPECT and fMRI at Stanford many years ago and had just a heck of a time getting the kids to be in the MRI tube, because it sounds like machine-gun fire, it's scary.

Tana Amen: Well and it's literally a claustrophobic feeling.

Dr Daniel Amen: And with SPECT, we didn't have any problems getting the ADHD, you know, the hyperactive kids to, you know, lay still for 15 minutes because we were bribing them.

Tana Amen: And they're not in this big tube that's firing at them, you know.

Shannon Kenitz: Right.

Dr Daniel Amen: And there are lots of myths and misconceptions about SPECT, it gives you a diagnosis, it doesn't, it tells you the underlying physiology of the problems you see. I mean, I can tell in about ten minutes if somebody has ADHD or they're depressed or they're bipolar or autistic, because I've been doing this a long time. What I can't tell is what's going on in their brain and what they're likely to respond to. I can't do that-

Shannon Kenitz: Without the scan.

Dr Daniel Amen: Without a map. And you've heard it said a picture's worth a thousand words, but a map is worth a thousand pictures. A map tells you where you are and gives you direction on how to get to where you wanna go and that's what you got with Grace and then periodically like you're on a journey, you map it. And you go "Well, how am I doing?" So we think of it sort of like GPS for the brain.

Shannon Kenitz: Well that was perfect. I'm gonna use this on my website when parents contact me. That's exactly what I want because people know that I love- that I tell them they need to do scans for various reasons, because I think it is important and I think that brain mapping is incredible and I think that's the way of the future. And I just got it from the best person ever, so I'll be able to put that on my website.

Tana Amen: Was that all of your questions. Did that answer, sort of, the questions?

Shannon Kenitz: Yeah, that did because the parents are-

Dr Daniel Amen: Well, we are just so grateful to Shannon and you can learn more about her and her work at Shannon and Grace dot com?

Shannon Kenitz: Dot com.

Dr Daniel Amen: Dot com. Shannon and Grace dot com so you can learn about special needs and the Medical Academy of Pediatric Special Needs, MAPS, where I'm blessed to teach. You can get a link to that website to find a doctor that's been trained a completely different way to look at helping children. You can also learn about her work with the International Hyperbarics Association and all the other amazing things she's doing.

Thank you so much for being with us.

Tana Amen: Thanks Shannon.

Shannon Kenitz: Oh, thanks so much for having me.