Latest / Pediatrics Now: Cases Updates and Discussions for the Busy Pediatric Practitioner / “My Brain Feels Better!”

Transcript

“My Brain Feels Better!” · Pediatrics Now: Cases Updates and Discussions for the Busy Pediatric Practitioner

• 0:00
  Lisa and Craig, what makes you so brave to be able to speak out about this?
• 0:09
  A lot of people would want to just put it all behind them. It was a nightmare,
• 0:13
  but it didn't have to be a nightmare.
• 0:15
  It didn't have to be as much of a nightmare as it was. The reason it went on
• 0:18
  for so long is we couldn't get the proper medical attention and help that we needed.
• 0:23
  So that's why we're motivated to speak out, because I want things to change,
• 0:27
  and I don't want any other families to go through what we went through.
• 0:30
  He was about 14 and a half, almost 15.
• 0:34
  It started off, you know, just looking like basic OCD at first,
• 0:41
  washing your hands a lot and being kind of a little neurotic about walking barefoot on the carpet.
• 0:47
  But then it quickly just went to a whole other realm.
• 0:50
  Like, you know, I called OCD therapists to try to help them.
• 0:54
  And they were like, this is way beyond anything we see. um.
• 1:00
  And so that's when we started trying to dig into what else could be causing this.
• 1:04
  It progressed from the typical germophobia thing to what you call emotional contamination.
• 1:14
  So when he got the illness and it just progressed, he associated his sickness
• 1:22
  with the place we lived, the people we knew,
• 1:26
  the cars we drove, the actual house we lived in.
• 1:30
  Everything became contaminated.
• 1:33
  So he didn't even want to be inside our house. He would not get in the vehicle,
• 1:39
  which made it extremely complicated because we could not get him to a doctor.
• 1:44
  He refused to get in a car.
• 1:47
  He would sit outside on our patio all day. This was early on.
• 1:53
  And it got to where, you know, things that he and his sisters used to do for fun.
• 2:00
  Became contaminated too and he couldn't even look at images of games or anything
• 2:06
  that they used to do without just becoming extremely agitated and upset yeah
• 2:12
  there was a period early on where he would just go ballistic if he even heard
• 2:15
  his sister speak you know like she.
• 2:20
  And then that kind of transferred over to me for a long time.
• 2:24
  And then he made everything about mom, everything.
• 2:27
  It was just like so typical with Pan's kids.
• 2:30
  They make one parent, like the good parent. One parent is the off-limits parent.
• 2:34
  And then the worst aspect of it was he started to refuse eating or drinking
• 2:40
  unless he could go through his own kind of made-up rituals,
• 2:46
  OCD rituals, to make himself feel kind of clean.
• 2:50
  Um, and again, not necessarily the germs anymore. It was more of the emotional side of it.
• 2:56
  Yeah. So, um, these are things he made up that he felt like he had to do with
• 3:00
  no explanation to us, but, uh, get him to eat or drink unless we did it.
• 3:06
  And it would be hours and hours and hours and hours of usually me repeating
• 3:10
  sentences and phrases, um, all sorts of like things, objects I would have to
• 3:15
  hand him and he would have to do all these things, like spit into a cup, like all this.
• 3:21
  They got more and more bizarre and entrenched as time went on.
• 3:24
  He actually very quickly wouldn't even go to his room. We ended up moving out
• 3:28
  of the house that we found had mold in it.
• 3:30
  And we moved from Houston here to Austin in the Leander area.
• 3:34
  And he was.
• 3:38
  Every single day on the couch, he couldn't get off the couch.
• 3:40
  He was on the couch 24-7, no clothes on, just a blanket. Would not use the toilet.
• 3:45
  The toilets became contaminated, so we had to put a bucket in the living room.
• 3:50
  And he has two sisters, so you can imagine what that would have been like.
• 3:56
  Trying to help them have some kind of life, the trauma for them and us.
• 4:03
  His sleep cycle was completely upside down. He would be up all night screaming
• 4:07
  and yelling, demanding for me to do all these rituals.
• 4:11
  And like I said, we could go, he could keep me up for up to like 36 hours straight
• 4:16
  with rituals, like not eating or drinking anything until everything was right.
• 4:23
  And when we would get to a point of crisis, we would have to call EMS because it would be so bad.
• 4:33
  And he wouldn't get in a car so we couldn't go to any specialist we were calling
• 4:37
  specialists for help and they would advise but he wouldn't go see them we had
• 4:42
  no way to get him yeah he wouldn't even put clothes on much less get out the
• 4:46
  front door and and you know it.
• 4:50
  It got pretty severe pretty quickly. Like even before we moved out of the house
• 4:53
  in Houston, it was like first he was, he actually, we tried to go to the hospital
• 4:58
  in the Woodlands and they did nothing for us.
• 5:01
  And it was a situation where they was very traumatized and the cops and the
• 5:04
  EMS dragged them out of the shower, kicking, screaming naked,
• 5:08
  sedated them with ketamine, got to the ER and they did nothing for us,
• 5:11
  sent us back home empty-handed.
• 5:13
  They didn't even have a doctor on site. There was a nurse practitioner,
• 5:17
  but we were there all night and that's, they didn't do a single thing.
• 5:21
  They just sent somebody, some kind of counselor to talk to him. It was just pathetic.
• 5:26
  And so he locked himself down in our shower for about seven months.
• 5:29
  Like every waking moment he would come downstairs naked and like would stay
• 5:33
  in the shower all day long. And that's the only place he would drink.
• 5:37
  In the shower? Yeah. It could be a four hour stretch. It could be a 21 time he did a 24 hour stretch.
• 5:43
  With the water going? with the water running if we tried to
• 5:46
  turn it off he would start slamming the glass and banging and
• 5:49
  the reason people say well why did you tell her why didn't you just because we've
• 5:52
  already tried to get help and we'd already
• 5:55
  got through a very traumatizing experience with our boy you know and they did
• 5:59
  nothing for us so we felt stuck and so we're trying to ride this out we're trying
• 6:04
  we were trying to get him off an ssri the psychiatrist put him on that made
• 6:07
  him however bad it was as soon as we put him on the ssri he went about 10 times
• 6:11
  worse so we were trying to taper him off that safely.
• 6:15
  We felt like that was our only choice was to do that, and nobody at the hospital was going to help us.
• 6:19
  So we hunkered down for six or seven months until we got to the hospital again,
• 6:24
  and then that cycle repeated itself probably seven or eight or nine times with no help.
• 6:30
  So this was, sorry, the chronology were bouncing back and forth,
• 6:34
  but that's when we were still in Houston. It's before we moved here.
• 6:38
  That whole phase where he would spend all night in the shower was still there.
• 6:44
  And, uh, he lived on the couch for several years, like would not get up,
• 6:49
  um, could not use the toilet, couldn't go get food for himself.
• 6:53
  Um, totally at like, we've lost our child.
• 6:57
  Like, I don't know who this person is. He's not rational at all about any of
• 7:00
  this, but he would have conversations with us. Like he knew what he was doing.
• 7:05
  Didn't make sense, but he was in my brain hurts.
• 7:08
  My brain hurts me so bad. And it makes me do these things. If I don't do them, it hurts even worse.
• 7:14
  And so I have to live like this because I'm in so much pain.
• 7:18
  And by this time, we had the diagnosis of PANS.
• 7:21
  Because if you look at the, it's a clinical diagnosis primarily.
• 7:24
  If you look at Texas Health and Human Services site for PANDAS and PANS,
• 7:29
  he checks every single box. So it's diagnosed clinically at first.
• 7:32
  And there are extra tests you can do to double up on that and verify that.
• 7:37
  But he checked every clinical box.
• 7:40
  He's like the poster child of Xtreme.
• 7:43
  So, and Lisa and Craig, thank you so much for being here on Pediatrics Now and talking about this.
• 7:50
  And I know you're hoping that this will help pediatricians who are listening
• 7:54
  and help parents who are listening.
• 7:57
  So it sounds like the behavior became stranger and stranger.
• 8:03
  And then the more you're trying to get help, it's not helping.
• 8:08
  We went from out of the frying pan into the fire.
• 8:11
  And so then we would get into these situations in the hospitals because we had
• 8:16
  to call EMS and take them.
• 8:18
  And they would just continue to send us to psych, send us to psych.
• 8:21
  And by this time, we already had a diagnosis of PANS from his doctors that are
• 8:25
  on the Health and Human Services Advisory Board with this condition.
• 8:29
  But the hospital doctors wouldn't talk to them. They wouldn't listen to us and
• 8:33
  they would just stick us back in psych again. And.
• 8:37
  It was extremely frustrating. We were wearing down, my wife,
• 8:40
  and the level of care, the burden of care on us was through the roof.
• 8:44
  We felt like our health was declining, and we were not going to make it much longer.
• 8:49
  And if we hadn't found Dr. Infante in San Antonio when we did,
• 8:52
  I don't know where we'd be today.
• 8:54
  By the time we got to Dr. Infante, I think we had been about 12 hospitals,
• 9:01
  probably about 20 visits total between the 12.
• 9:05
  That you know like all the big cities all very traumatizing all dried in your
• 9:10
  mouth and it was the same repetitive um speeches every time uh it was always
• 9:16
  the psych team that boiled down to.
• 9:19
  Uh and that's really the only way that any of them wanted to handle it even
• 9:24
  though we kept requesting because of the parent support groups and advice we
• 9:29
  were being given to do some tests,
• 9:32
  certain tests for the autoimmune.
• 9:34
  Yeah, his specialist and other parents who've been through it to do some certain
• 9:41
  tests for the autoimmune antibodies in the brain.
• 9:45
  No hospital would do it. They just didn't like the test. I don't know why.
• 9:52
  But Dr. Infante, he recognized what we were asking and knew the test.
• 9:58
  So he was in agreement and that's how we finally found what we needed to find.
• 10:03
  And he, and to his credit, he not only ran the right test and gave us the right
• 10:07
  treatment from the first meeting with him, he was extremely compassionate.
• 10:12
  He saw how long we'd been suffering. He saw that this was devastating,
• 10:15
  not only our son, but us and our other children, the whole household.
• 10:20
  And he did not hesitate to step in and do the right thing. Yeah.
• 10:28
  If it wasn't for him we could still be stuck in that cycle and
• 10:31
  and he he was courageous and faithful enough
• 10:34
  our son is totally better after the test we
• 10:37
  dr infante prescribed ivig treatment which
• 10:39
  is a monthly iv infusion um at home and at home we had the first one in the
• 10:44
  hospital and then every month after that we had a nurse that would come um and
• 10:49
  and treat him it's two days in a row so it's like seven hours straight very
• 10:53
  long gives you a nurse and they show up they send the supplies and they administer
• 10:58
  the whole thing at the house.
• 10:59
  I would like to also note that we were accused, because this is something,
• 11:08
  and to me it should be drastically changed in policy,
• 11:12
  of Munchausen's by proxy, which basically is saying we caused our son to be this way.
• 11:20
  Um, which is very painful when you're trying to help your child and,
• 11:25
  um, people don't believe you, you know?
• 11:29
  Um, so that's something that needs to change because I don't know what kind
• 11:35
  of training goes into, you know, doctors as they, as they're going through med
• 11:40
  school and all that, but like, that's something we encountered several times. Yes.
• 11:44
  We actually, ironically, we actually.
• 11:47
  That that happened. It's sounds just awful.
• 11:50
  It was terrible. I mean, ironically, we had one of the hospitals,
• 11:54
  the last one there, a pediatric abuse specialist, you know, never came and interviewed
• 12:01
  us, never came and saw Ryan or talked to Ryan,
• 12:06
  wrote this scathing affidavit out of thin air and submitted it to a CPS guy
• 12:12
  and the CPS guy is the third one.
• 12:14
  And the first two CBS agents totally dismissed it because they talked to our
• 12:17
  doctors and we were trying to get help.
• 12:19
  And they talked to us and Ryan and realized. They did their due diligence.
• 12:23
  There's nothing wrong here. The parents are trying to do the best they can with this situation.
• 12:29
  But the third time we were reported from a hospital.
• 12:33
  The same hospital, yeah. Yeah, the same hospital did it every time.
• 12:37
  This agent did not come meet us. He did not interview our son.
• 12:41
  He did not interview any of our doctors. He just went and got a court order.
• 12:45
  And this is after we came home with Dr. Infante's prescription for IVIG to be started right away.
• 12:53
  We were home from San Antonio for two days and got the knock on the door. And it was CPS.
• 13:00
  A bunch of police came and took him.
• 13:03
  And for the next three weeks, we were in a court battle. We could not start the IVIG.
• 13:11
  And we didn't even know if we'd get our son back at that point to even start it.
• 13:14
  Yes. They were trying to take him away. And we spent about $20,000 in legal fees to get him back.
• 13:21
  It sounds like most people did not have any idea what you were going through, what this actually was,
• 13:29
  and that it was just one problem after another, just kind of snowballing,
• 13:35
  just something that it would,
• 13:38
  any parent, it would just, like we talked about, but like we said earlier,
• 13:42
  what a nightmare where you're just trying to help your child. your child.
• 13:48
  Can you tell me once he got the antibody treatment, because we'll be, Dr.
• 13:53
  Infante is going to be talking about, he's joining us on the show to talk about the treatment.
• 14:00
  But so how does it work? And then what change did you see in Ryan once he got the treatment?
• 14:08
  Well, immediately the first thing that got better was his sleep.
• 14:12
  So prior to this, he, his circadian rhythm was totally off.
• 14:16
  He could be up from, from, he could wake up at midnight and be up until noon
• 14:21
  the next day and then fall back to sleep at noon.
• 14:23
  And then he could stay up for 30 hours straight and then maybe sleep four hours
• 14:27
  and wake up and do it all over again.
• 14:28
  We had no, our lives were just, there was no rhyme or reason to our lives or schedule.
• 14:32
  Once he got his first treatment, the only thing that changed at first was that
• 14:36
  he just started sleeping when we went to sleep.
• 14:38
  He fell asleep at 11 o'clock at night and wake up at
• 14:41
  like nine in the morning it was great um and
• 14:44
  then about a couple of months after that uh some of his rituals started falling
• 14:48
  off like asking my wife to repeat certain things by about the fourth month he
• 14:54
  asked my wife to come bring him his clothes he's still stuck on the couch he
• 14:58
  said bring me my clothes she laid him on the couch and he put him on lickety split you know.
• 15:04
  All by himself i mean which is amazing
• 15:07
  um and then that just kind of kind of
• 15:10
  increased every month every after every infusion uh one
• 15:13
  more thing then he'd go start taking a shower on his own then he'd start
• 15:16
  brushing his teeth then he started using the restroom again you know until we're
• 15:20
  going out and we're going to see movies and we're meeting other families with
• 15:23
  sick kids at restaurants that and he's and he's starting to form relationships
• 15:27
  and social circle again um to the point where Like then he starts taking violin lessons and, um,
• 15:34
  and he's showering every day on his own and he's sleeping in his bed and he's
• 15:37
  got his own bathroom and he taking care of his own hygiene again and walking
• 15:42
  in the kitchen and getting his own food, you know?
• 15:44
  Yeah. It sounds like, it was like a reverse, you know, of the progress down.
• 15:49
  It was like going backwards, like little by little coming, him coming back.
• 15:55
  How old was Ryan at this point when you started to see your son coming back? He was 18.
• 16:02
  Wow. So three and a half years, you said? Three and a half years,
• 16:06
  totally lost. And this treatment, it sounds like.
• 16:11
  It's miraculous for us. It was. Yeah.
• 16:16
  Um, how is Ryan doing now? Great.
• 16:21
  Yeah. He's, uh, he loves, he's just, he loves life. He loves feeling good every day.
• 16:26
  He just like, thanks God that he doesn't feel sick anymore. And then his brain
• 16:30
  doesn't hurt. And he's able to go out and do what he wants to do.
• 16:33
  And we take him down to Georgetown square and drop him off the library.
• 16:36
  And he has a great time there. He'll walk around the square and just start forming relationships.
• 16:41
  He started playing the tin whistle and he'll go down on the square and play
• 16:45
  songs on his tin whistle. People like give him money, you know?
• 16:48
  So he's really playing catch up right now.
• 16:51
  Socially. He had to drop out of school or out of homeschool even,
• 16:55
  right? Yeah. Did you homeschool all three of your children?
• 16:58
  Yes, he was at the tail end of ninth grade when he got sick. So he lost all of that.
• 17:02
  We're trying to get him going with his GED at this point because he'll be 20 in May.
• 17:08
  Wow. I'm so sorry for everything that you've gone through, Lisa and Craig,
• 17:14
  and I am so thankful to you for being willing to be on the podcast and to talk to us about this.
• 17:23
  Is there anything you want to say to the parents who are listening and then
• 17:29
  anything else to the pediatrician listener?
• 17:34
  Well, to the pediatricians, I would say, you know, listen to the parents and do your due diligence.
• 17:40
  If they already have an outside physician that they're working with that is
• 17:43
  that may have a contrary opinion to your first analysis, go talk to them.
• 17:48
  Go to Texas Health and Human Services and see that there's an advisory board
• 17:53
  created by our governor of the state.
• 17:57
  And these doctors serve on this advisory board. Or sorry, just so we can maybe
• 18:02
  tell me more about what did you love about Dr. Infante? It sounds like he really listened.
• 18:08
  Well, he really listened. He saw our suffering and it affected him.
• 18:12
  And he also was very knowledgeable about the condition.
• 18:14
  He was, in fact, the first hospitalist doctor. I mean, we'd been in front of
• 18:19
  dozens of hospitalists in almost every city,
• 18:23
  every major city in this state, from Austin to Houston to Dallas to San Antonio.
• 18:31
  He is the first physician that actually knew anything about this condition and
• 18:35
  knew how to diagnose it and knew how to treat it.
• 18:37
  When we asked for the Cunningham panel, which none of the other hospitals would
• 18:42
  acknowledge or knew, he knew what it was right away.
• 18:47
  Because he was actually a colleague with Dr.
• 18:52
  Coyne Hamm who developed the test.
• 18:54
  So he knew her and knew that this was a good test and worth our time.
• 19:00
  So, you know, I think he has a lot of valuable information to share also when
• 19:08
  it comes to this illness, you know, for other doctors to learn from, you know.
• 19:15
  Well, I think another thing that he did, too, was that he saw the history of,
• 19:19
  He saw that we had already been down the psych road. We've already tried several psych facilities.
• 19:24
  Ryan had been on a number of psychiatric meds that all did not help or made him worse.
• 19:29
  And he went when he was being logical. He said, well, they've tried this,
• 19:32
  but they haven't tried this.
• 19:34
  Yes. What set Dr. Infante apart was he used his head and his heart.
• 19:41
  And that's what we'd like to see more of.
• 19:46
  Well, I'm so glad that Ryan is doing so much better. And now do you just,
• 19:51
  I mean, tell me what you're feeling now that you've been through all of this
• 19:54
  and that your son is, it sounds like he's, he's back to normal.
• 20:00
  Yeah, it's amazing. I mean, our lives are still very much touched by all this
• 20:06
  because we lost our home.
• 20:09
  We are in a different city now. I still have to travel every week back and forth to Houston.
• 20:13
  It wiped out all of our, any savings that we had is gone.
• 20:17
  I mean, we're, so we're still dealing with all the repercussions of it,
• 20:21
  but to have him back is so worth it.
• 20:24
  I mean, the relationship now that we have with him is so strong and he's so
• 20:29
  solid emotionally and spiritually and so mature that he this trial has really shaped him.
• 20:35
  And now he's a point of like strength and comfort to his older sisters who are
• 20:41
  still trying to recover from all that they went through on the sidelines.
• 20:45
  You know, they got pretty neglected as we all our attention was focused on him.
• 20:52
  Before we go, can you describe just when you were going through all of this,
• 20:55
  just some of the emotions you were feeling and did you ever even consider giving up?
• 21:02
  Or do you think, what if we had given up? Where would we be now? Yes, absolutely.
• 21:09
  I mean, it was a totally inhuman thing to go through. Inhuman.
• 21:16
  To not sleep for almost four years, to have other children who need you just as much and you can't.
• 21:25
  Um you know i
• 21:28
  think the only reason we made it through was support
• 21:32
  from friends and family and the parent support group you know advice we had
• 21:38
  from other people going through it uh specialist doctors who did acknowledge that this was real uh,
• 21:50
  But unfortunately, their hands were tied because, you know, they couldn't,
• 21:53
  they didn't have a voice in the hospital setting, which was the only place we could get.
• 21:58
  So, but, you know, if it weren't for many, many people, I can't say that,
• 22:06
  you know, we would have had this outcome. No, no, it was, it was amazing to come out of that.
• 22:11
  I mean, like waking up from a nightmare, an utter nightmare that you're just exhausted.
• 22:16
  You don't want to give up because you love your child.
• 22:20
  But you're like, I physically can't, physically and emotionally,
• 22:23
  I don't know if we can go another day or another week.
• 22:26
  And then somehow you do. And I mean, the insanity that we went through,
• 22:31
  I mean, I didn't even, I scraped the surface of it.
• 22:33
  I mean, you can make like a Netflix drama out of this. It was so,
• 22:38
  if I watched it on TV, my jaw would be hanging on the floor.
• 22:41
  But to live through it, I mean, I couldn't believe this had become our life.
• 22:43
  And just such a wonderful story, though, of love,
• 22:50
  parental love and perseverance and amazing medical care.
• 22:57
  It's incredible what can be done in the medical world, really.
• 23:00
  Like you saw both sides, drastic sides.
• 23:05
  Oh, yes. I would really, my goal is I would hope that if pediatricians or physicians
• 23:10
  are not familiar with this condition, that they would talk to somebody like Dr.
• 23:15
  Infante, who is. We'll be talking to Dr.
• 23:18
  Infante in just a few minutes.
• 23:21
  And so he'll be here on Pediatrics Now. But Lisa and Craig Wilkerson,
• 23:26
  thank you again so much for being here on Pediatrics Now and sharing your story.
• 23:32
  Thank you for giving us the opportunity.
• 23:35
  Joining me now is Dr. Anthony Infante. Dr. Infante, thank you so much for being
• 23:40
  here today on Pediatrics Now.
• 23:42
  So let's pick up where they finally get to you. They've been through a lot,
• 23:47
  and you finally see Ryan.
• 23:49
  What's your first clue regarding what needed to be done?
• 23:56
  Yeah, good question. You know, I've been seeing these patients,
• 24:02
  patients like Ryan, since, you know, the early 2000s.
• 24:08
  This PANDAS syndrome was, you know, really only well described in the 90s.
• 24:15
  So in terms of the way medicine works, that's pretty recent.
• 24:20
  And it remains controversial.
• 24:25
  And, um, you know, it, it falls within, it falls in the cracks.
• 24:31
  Um, and so many, many families that are faced with this kind of situation, um,
• 24:40
  get frustrated and, um, look for answers and, and, and, um,
• 24:49
  And they eventually find their way to different referral patterns.
• 24:59
  So can you tell us about, because you mentioned PANDAS, but they said,
• 25:04
  so was this something different called PANS?
• 25:06
  So what Ryan has, it's related to PANDAS or what he had?
• 25:11
  You know, it's a continuum. them.
• 25:14
  PANDAS was originally described as a syndrome that occurred after streptococcal infection.
• 25:24
  And then people broadened the definition because it seemed as if it could be
• 25:31
  initiated by other infections or inflammatory triggers.
• 25:38
  And once established, it could be You know, further episodes could be triggered
• 25:45
  by other triggers in addition to strep.
• 25:52
  And so the diagnostic description were modified to include that.
• 26:02
  So, you're an immunologist with 43 years of experience at UT Health and University Health.
• 26:14
  For pediatric providers who may be less familiar, can you tell us about PANS,
• 26:19
  what it stands for, and how it is fundamentally different from primary psychiatric illnesses?
• 26:28
  Yeah, I mean, the term stems from—it's an acronym—Pediatric Acute Onset Neurological Syndrome. And—.
• 26:46
  You know, that's a description of something that happens in children that are
• 26:53
  generally, you know, either neurologically typical or stable.
• 26:59
  They may have other mental health conditions, but they're stable,
• 27:07
  and they seem to have an acute onset of a limited number of neurological and
• 27:16
  psychiatric symptoms, systems.
• 27:21
  Uh, among which the most common are movement disorders, uh, including tick disorder,
• 27:28
  and, um, obsessive compulsive disorder.
• 27:32
  And then there are a list of other things that are less common,
• 27:36
  but, um, can also be included.
• 27:39
  And, um, uh, and, and that, and that, and that's kind of the case,
• 27:44
  uh, definition, uh, of things, you know, how it differs from, um,
• 27:52
  you know, what you might call primary or garden variety tick disorder and OCD
• 27:57
  and, and, you know, other behavioral and neuropsychiatric disorders is I think
• 28:03
  the crux of the, of the controversy.
• 28:05
  Um, because, you know, those, those things are really not well explained.
• 28:11
  And, and so when you have a disorder that, um, you, you can't tell the,
• 28:17
  the, the family what the, uh, what the basis, uh, for it is and, um, um.
• 28:25
  And they don't respond to the typical treatment that's used,
• 28:31
  then that generates a lot of anxiety, frustration,
• 28:35
  and, you know, seeking behavior from the parents, you know, about what else can be done.
• 28:44
  So, when PANS and PANDAS was
• 28:49
  described and was proposed to be a disorder that was post-infectious or post-inflammatory
• 29:00
  and involved activation of the immune system and inflammatory pathways,
• 29:05
  you know, that opened up a window to doing additional diagnostic studies.
• 29:12
  And offering additional treatments above and beyond medicines whose primary
• 29:24
  mechanism of action is suppressing the symptoms through acting on the central nervous system.
• 29:33
  Um, so I think that's the key, the main gist of, of, of where we are now with, with this syndrome.
• 29:43
  You know, I got involved, um, it's kind of interesting that I,
• 29:49
  I, I used to get a lot of funding, uh, from the National Institutes of Health,
• 29:53
  uh, for, um, uh, basic research studies.
• 29:57
  And so they had my name on a list.
• 30:00
  And I got a call one time to go to Bethesda, Maryland,
• 30:05
  where the National Institutes of Health are, and be part of a panel to review
• 30:10
  one of the medical scientists that was working at the NIH campus,
• 30:17
  the so-called intramural program.
• 30:19
  And it was the laboratory of Dr.
• 30:22
  Susan Suido, who was the person who initially described and popularized the term pandas.
• 30:30
  And so I was sort of a blank slate at that time and sat on that panel and participated
• 30:39
  with some other outside advisors in reviewing the research.
• 30:45
  And, you know, we had some very lively discussions and it was obviously,
• 30:48
  it was a controversial, uh, area.
• 30:51
  And, um, but, you know, I, I, I took that information back and,
• 30:56
  and, um, um, you know, continued, continued my, my practice.
• 31:01
  You know, then and later, you know, maybe five or 10 years later,
• 31:06
  I was contacted by a friend of mine, an immunologist from Oklahoma City named Dr.
• 31:14
  Madeline Cunningham, who developed a battery of tests that were assessed in patients with PANDAS.
• 31:25
  And shown to have some usefulness in identifying which cases might be due to
• 31:33
  autoimmune activation by the strep or other infection.
• 31:39
  As a way of, you know, a back story, Dr.
• 31:46
  Cunningham made her career reputation
• 31:49
  in studying some very well-defined post-streptococcal disorders,
• 31:56
  particularly post-streptococcal heart disease.
• 32:03
  Rheumatic heart disease, as well as other post-streptococcal syndromes.
• 32:09
  Like Sydenham's chorea, which is even closer, you know, to PANDAS in terms of
• 32:15
  a post-infectious neurological syndrome.
• 32:20
  So I talked with Madeline and she started offering these tests in a commercial
• 32:26
  laboratory that she spun off from her academic work because she was getting so many.
• 32:35
  Requests to do the studies with the idea that, you know, if we could show that there was some,
• 32:42
  immunological activation, then that would justify doing immune interventions in addition to, and I.
• 32:54
  Try to dissuade families from seeking psychiatric help.
• 32:57
  In fact, I encourage it because symptom control is still important even while
• 33:06
  you're trying to do underlying immunotherapy.
• 33:12
  But in this case, didn't it sound like it made things worse?
• 33:16
  Or can you tell us what anything should have been done differently?
• 33:21
  No, I don't think so. So I don't, yeah, I mean,
• 33:24
  and that's a common story that I hear in the cases that reach me is that not
• 33:34
  only don't these medications work in some of these cases, but yeah,
• 33:40
  they actually seem to make the situation worse.
• 33:46
  And then, of course, in this particular case, and you may have gotten into it with the family.
• 33:52
  That engendered allegations of neglect and not following through with medical
• 34:02
  recommendations and that kind of thing,
• 34:05
  which then snowballed and really became a big mess in this particular case.
• 34:16
  And it sounded like that all happened when they finally got the prescription
• 34:22
  for the right treatment from you, and then they still had to wait because of the court battle.
• 34:30
  Yeah, yeah, that was part of it. But so what state was Ryan in when you saw him?
• 34:38
  And was there something right off, right when you saw him that clued you into,
• 34:44
  hey, I think this is what he needs? It's.
• 34:47
  Well, I, you know, it was just the fact that, that Ryan was so,
• 34:51
  um, disabled, you know, by any, um, definition.
• 34:57
  Uh, I mean, I'm, I'm sure the parents told you, you know, he wouldn't,
• 35:00
  he wouldn't wear clothes.
• 35:01
  He, he, he wouldn't, he wouldn't use the, the, the bathroom and the hospital room.
• 35:06
  Um, you, you know, he couldn't, um, uh, comply with any, uh,
• 35:11
  requests of the medical team, uh, without going through, uh,
• 35:15
  some ritualistic, uh, behavior.
• 35:17
  Years that were usually, usually had to be led by his mother so that he could,
• 35:21
  you know, get into whatever psychological frame of mind to, you know, uh, to do that.
• 35:27
  So, you know, so, so from the one standpoint, it was, you know,
• 35:31
  is particularly clear that he was, you know, kind of, uh, in an extreme,
• 35:36
  uh, uh, condition of, uh, of, of disability.
• 35:41
  And, and then there were some clues, in the medical record, and of course then
• 35:46
  we did the battery of tests that Dr.
• 35:49
  Cunningham runs that showed that there was evidence of autoimmune activation.
• 35:56
  So, you know, at that point, I recommended that we go ahead and,
• 36:03
  treat him as such. So.
• 36:12
  It was after you ran the Cunningham test, then you prescribed the antibody infusion?
• 36:19
  Yeah, IVIG, yeah, it's an infusion of antibodies.
• 36:23
  I mean, I think that the story that pediatricians here, is that this was a child
• 36:34
  that was previously normal or stable.
• 36:38
  Then they had an acute change in their behavior, and that that included certain
• 36:49
  items that raise concern, uh,
• 36:53
  that among the most common are, uh, a movement disorder, uh,
• 36:59
  including facial and motor and vocal tics, um,
• 37:04
  and, and, um.
• 37:06
  Um, obsessive compulsive, uh, behavior.
• 37:10
  Again, those are not the only ones, but, but those are among the major ones that are,
• 37:16
  that And then if there's evidence that they've had a streptococcal sore throat,
• 37:27
  strep throat, or other significant infection within that window,
• 37:34
  because it's, you know, it's not the infection per se that causes the symptoms.
• 37:43
  It's the body's immune response to the infection that, um, gets redirected,
• 37:50
  um, to the nervous system that causes the symptoms.
• 37:54
  And so that history of an infection during that kind of early period is the
• 38:08
  other thing that happened.
• 38:13
  Causes or should cause pediatricians to think about that as a diagnostic possibility.
• 38:20
  So an otherwise healthy... And some kids with mild symptoms will just respond
• 38:29
  to the treatment of the strep infection where it's present.
• 38:32
  You put them on amoxicillin or a simple antibiotic.
• 38:38
  Some people also add in anti-inflammatory medicines like we would do in arthritis
• 38:43
  or some other inflammatory condition.
• 38:46
  And their symptoms improve significantly and may go away and never come back
• 38:53
  or may come back with a recurrence and then respond to the same treatment.
• 38:59
  So it's only the most severe and long-lasting symptoms that we would even think
• 39:05
  about treating with immunotherapy.
• 39:10
  So what you just described, so in what case would you advise if,
• 39:15
  what needs to be happening to try the amoxicillin and go from there,
• 39:21
  what you just described?
• 39:23
  Um, well, you know, I, as I said, I mean, if a, if a child is having symptoms
• 39:29
  that interfere with, uh, day-to-day activity, you know, um,
• 39:35
  they can't go to school or they, they can't, uh, excel in school.
• 39:40
  Um, you know, they, they can't function within the, the, the,
• 39:46
  the family group, uh, because their behavior is, is, is out of the ordinary, um,
• 39:52
  you know, then, then, then those patients are, are the ones that are,
• 39:57
  you know, that have, that have concern. Mm-hmm.
• 40:02
  And then if it's lasting longer than how long, is it time to get an immunologist on board?
• 40:10
  And, you know, I don't really think about it in those terms because,
• 40:15
  you know, I'm at the receiving end, you know, rather than the referring end in those cases.
• 40:24
  And, you know, I rely on my general pediatric colleagues to tell me when a child is, you know,
• 40:37
  exceeding their comfort level, you know,
• 40:40
  outside of the 95th percentile, if you will, of what would be commonly seen
• 40:46
  in a general pediatric practice.
• 40:50
  I mean, you know, these are a lot of these symptoms are relatively common and,
• 40:57
  you know, I'm sure they don't all come my way.
• 40:59
  So, you know, they're, they're, they're being, they're usually being very well
• 41:02
  screened at that, at that level.
• 41:05
  So, in Ryan's case, though, it was still the right thing for him to be seen by psychiatry?
• 41:12
  Yeah, absolutely. Absolutely.
• 41:17
  Yeah.
• 41:19
  Right. I mean, symptom control is, you know,
• 41:27
  very important to, you know, try to make the patient more comfortable and to
• 41:32
  break the cycle, which is so disruptive to the family and that kind of thing.
• 41:40
  So, yeah, as I mentioned previously, not only do I not tell them not to go to
• 41:48
  a psychiatry, I encourage them to be seen by psychiatry, neurology,
• 41:53
  you know, whatever consultant in those related fields are available to them. You know, yeah.
• 42:08
  What happened in this case, in Ryan's case, though, where the parents are saying
• 42:13
  it went from what could have been an eight-month process to four years of a nightmare?
• 42:20
  What can be done better or differently next time? Or is it because his symptoms
• 42:27
  were so rare or so severe, which is a lot less common?
• 42:33
  That's a good question. What did they say?
• 42:36
  Um, they felt like it was just the right treatment was, was missed that,
• 42:42
  that a lot of the doctors who, um, were even knew a lot about pans.
• 42:48
  It wasn't until they saw you that they got the right, that panel test,
• 42:54
  uh, prescribed for him and the right treatment that you were the only one who
• 42:59
  really knew what to do. Yeah.
• 43:02
  Yeah. Yeah.
• 43:04
  You know, I get a lot of people that both in and out of the medical profession
• 43:09
  that say they don't believe in pandas.
• 43:12
  Oh, really? And my response to that is that medicine is not a belief system.
• 43:22
  While it is both an art as well as a science,
• 43:27
  medicine is based on observation, experimentation, intervention,
• 43:34
  and figuring out what works and what doesn't.
• 43:39
  And so I think –.
• 43:44
  Um, you know, the, the information is out there, uh, people that are not familiar
• 43:48
  with it, um, should, should review that information, review what's written out
• 43:53
  there and, you know, consider the source and, um,
• 43:57
  um, you know, uh, things like this, um,
• 44:01
  uh, interview and, um, podcast, uh, uh, are important to, uh, spreading, uh, um,
• 44:09
  awareness, uh, of that information, uh, is important.
• 44:14
  And, um, yeah.
• 44:17
  And, and, and, and so I think it, I think it starts, um, I think it starts there.
• 44:23
  So, the way his parents describe it, they felt like he cycled through the psychiatric
• 44:31
  care without improvement.
• 44:33
  Yeah. So, is the right way to have that psychiatric care plus see the immunologist
• 44:42
  as well as things are not improving?
• 44:45
  Yeah, yeah. I mean, I think as in many cases, you know, you give these things
• 44:52
  a fair try and if they don't go the way that you think they should go.
• 45:00
  You know, you either question whether your diagnosis is correct or you question
• 45:07
  whether there are additional therapies that are available that might be helpful.
• 45:15
  You know, when I was in training, I had a child neurologist at the Mayo Clinic
• 45:21
  tell me one time at lunchtime, what did he say?
• 45:26
  Something like, I'm paraphrasing now, but, you know, neurology is the branch
• 45:31
  of medicine where you observe the, no, you diagnose the obvious and you observe the inevitable.
• 45:37
  And I thought, wow, how cynical and fatalistic is that?
• 45:47
  And, you know, maybe we need to rid, you know, not just neurology,
• 45:56
  but lots of branches of medicine with that kind of attitude and thinking.
• 46:03
  Um, you know, you know, uh, things change, uh, new information becomes available
• 46:08
  and new understanding, you know, that leads to new treatment and, you know,
• 46:14
  uh, uh, eventually there's a, uh, a time where, where things, uh,
• 46:19
  uh, that were once considered, uh, uh.
• 46:23
  Uh, fringe, uh, uh, you know, left field, uh, kind of things,
• 46:29
  uh, becomes mainstream.
• 46:30
  I mean, I think we can all, um, uh, cite examples of that.
• 46:36
  When I was in training, uh, you know, if you had stomach ulcers,
• 46:40
  they would call a surgeon and you would have most of your stomach removed.
• 46:44
  Uh, now, now, now we know that most stomach ulcers are caused by a,
• 46:49
  uh, a novel bacteria that was discovered.
• 46:52
  And, you know, most cases of gastric ulcers are cured by antibiotics.
• 46:58
  So, again, I think you just have to change with the times and adapt and evolve.
• 47:12
  Yes. And they said that when he was in a psychiatric hospital, he wasn't eating.
• 47:18
  And so he would just lie on the floor for days and then he would have to go
• 47:22
  to another hospital to get an IV, um, so that he could survive.
• 47:27
  And then he would go back to the same setting for a while. It just sounds awful.
• 47:31
  Yeah. Yeah. Our, our, our, our medical system is not very well set up to,
• 47:36
  to deal with those kinds of, um, uh, situations.
• 47:43
  Yeah. It's not just an either or it's, uh, you know, it really requires a,
• 47:48
  uh, multidisciplinary kind of team.
• 47:55
  And again, you know, patients that are so disabled,
• 48:00
  um.
• 48:02
  Again, you may have to edit some of this for content,
• 48:06
  but I made
• 48:10
  a remark in the court hearing that we had where one of the psychiatrists that
• 48:21
  was involved had laid out this plan of psychological counseling and behavior modification.
• 48:28
  And, you know, I mean, I had just seen, um, um, Ryan on a couple of occasions
• 48:34
  and, you know, I was just obvious to me.
• 48:36
  I said, I mean, I said, you know, you're not going to talk him out of these symptoms.
• 48:40
  You know, he's just not, uh, you know, he's so severely, uh,
• 48:45
  impaired that, uh, uh, it's going to take, is going to take more than just some
• 48:49
  talk therapy to adjust his brain chemicals to, uh, you know, to make him better.
• 48:54
  And is that where, instead of it being behavioral, the symptoms were behavioral,
• 48:59
  but it's a medical issue that requires a particular treatment?
• 49:04
  Well, again, I'm speaking as an outsider, and I'm not trying to put down other specialists.
• 49:13
  Right, of course. I never understood why neurology and psychiatry were different.
• 49:18
  But, you know, they're both manifestations of brain and nervous system illness
• 49:25
  is just the symptoms are somewhat different.
• 49:28
  Dr. Gross wants to start a clinic, a special clinic that combines both.
• 49:32
  Well, you know, Sheldon is a free thinker and ahead of his time, just like I hope to be.
• 49:39
  So, yeah, we're on the same wavelength with that.
• 49:43
  And the other thing I have to say is one of the biggest areas of growth in my
• 49:50
  practice over the last five to 10 years has been not just in PANDAS,
• 49:55
  but has been in other neurological disorders, which are now well accepted to
• 50:03
  be manifestations of autoimmune disease.
• 50:06
  And so, you know, I get called for things that I never would have dreamed of
• 50:14
  being called about when I first started.
• 50:17
  You know, you talk about 43 years. That's a long time now.
• 50:20
  But, you know, things like intractable seizure disorders, things like behavioral
• 50:27
  regressions and Down syndrome.
• 50:28
  And, you know, there are a number of things that are out there where these syndromes
• 50:35
  are responsive to immunotherapy and either have been shown with, you know,
• 50:41
  documentation or are strongly suspected of being mediated by changes in the
• 50:48
  immune system and the inflammatory response.
• 50:52
  And Anthony, I know you said, and I know what you mean, where the pediatrician
• 50:59
  knows when to send to you, but I do get asked a lot, like,
• 51:03
  we want to know, when should we send, what can we treat in our office?
• 51:09
  Is there anything you want to mention there that could be helpful where they're
• 51:13
  seeing 40 patients a day often, and of course you don't want to miss anything,
• 51:18
  but you don't want the family to worry unnecessarily?
• 51:21
  Any advice there?
• 51:23
  Yeah, I mean, yeah, right. I mean, that's, that's why I'm not in primary care.
• 51:29
  You know, I like to take 30 to 60 minutes and, and, and, you know,
• 51:35
  have the luxury of doing that.
• 51:37
  And, and, and they don't, again, I think, you know, it's, it's listening, listening to the story.
• 51:44
  You know, there are, there are some things you can do to document strep infection
• 51:49
  in particular, whether that's a rapid strep test or culture,
• 51:54
  doing blood studies for streptococcal antibodies like the well-known ASO and
• 51:59
  anti-DNASB titers that can be done.
• 52:07
  And then, yeah, you know, in terms of therapy, I think many people are comfortable
• 52:13
  with treating with antibiotics.
• 52:15
  The two most common ones are used are amoxicillin and azithromycin,
• 52:21
  and using NSAIDs like ibuprofen and naproxen are also advocated.
• 52:28
  And then in patients that are significantly disabled or parents that are,
• 52:36
  you don't have exhausted trials of psychiatric medications and things like that,
• 52:45
  that's an appropriate time to refer.
• 52:48
  Do we know why some kids who get strep develop this and others don't?
• 52:53
  Yeah, you know, not well understood, but there are probably genetic factors
• 52:59
  of the particular strep strain that's involved.
• 53:05
  And there are probably also genetic factors involved in the particular host,
• 53:13
  the patient that's making that immune response.
• 53:16
  You know, the antibody response to infection is interesting from the standpoint
• 53:24
  that the antibodies that you make in the beginning of an infection can be very
• 53:31
  different than the antibodies that you make toward the end.
• 53:35
  And that's a reflection of the fact that the immune system fine-tunes its response
• 53:40
  to get stronger over time.
• 53:44
  Wow. So it's not confusing.
• 53:49
  When you say pandas and pans, it kind of can be used interchangeably.
• 53:56
  Because why? Do you want to explain that?
• 54:01
  Yeah, I mean, just because of observations that have been made over time.
• 54:08
  You know, it seems like the condition is not or can be triggered by infections other than strep.
• 54:23
  This family they talked about they thought it could be from a tick bite um,
• 54:32
  is is that possible you know uh i don't i don't remember that part of the story
• 54:37
  uh very well at at this point i i don't like all i guess they said all three
• 54:43
  i know you see so many patients but all three of their children had lyme disease
• 54:47
  so they're wondering if it could have been,
• 54:51
  it could have been triggered by Lyme disease. Yeah. Yeah.
• 54:55
  No, I, I, I, I, yeah, no, I, I, we don't know. I don't, I don't have any,
• 55:00
  I, I, yeah, I don't have any.
• 55:03
  We don't know. Comment on that. Is it possible or do we, should we not speculate?
• 55:10
  I wouldn't speculate. Okay.
• 55:16
  So when did you see Ryan improving? Was it pretty dramatic? or did it happen slowly?
• 55:27
  It happened over time. It happened over time.
• 55:31
  You know, some of the original descriptions of response to IVIG,
• 55:38
  which were also done by the same NIH group,
• 55:43
  showed dramatic improvement.
• 55:47
  And I have seen a couple of cases of dramatic improvement within the first,
• 55:51
  you know, few weeks of treatment.
• 55:55
  But I think in my experience, that's been somewhat exceptional.
• 56:00
  So my current practice is to at least try to get treatment approved for six months.
• 56:13
  Because I think, you know, in some cases, it takes that long to get significant
• 56:20
  or optimal improvement.
• 56:25
  But, you know, Ryan improved enough during that period that we were encouraged
• 56:32
  to push further with therapy.
• 56:38
  And, you know, as you probably have noticed, you know, Ryan doesn't live in San Antonio.
• 56:45
  So a lot of this was done through telemedicine, which, you know,
• 56:51
  which is a good use of that, you know, kind of technology.
• 56:54
  I've treated a couple of patients from different states, for example,
• 56:57
  and it was clear even from the videos that,
• 57:04
  you know, much like we're doing today, that he was significantly improved,
• 57:09
  that he was able to engage,
• 57:11
  you know, do things that he was just not capable of doing.
• 57:16
  He had clothes on for one thing. Wow. Yeah.
• 57:20
  I mean, that's a big change. It's, and your clinic is in university hospital, um.
• 57:31
  Do you want to explain or talk about anything else regarding the antibody treatment?
• 57:35
  It sounds so fascinating.
• 57:38
  Yeah. It sounds like this miracle cure.
• 57:46
  It is.
• 57:49
  Maybe it's the simplest explanation. So,
• 57:53
  antibody replacement therapy has a long and interesting history and was originally
• 58:02
  a niche treatment for very rare patients that don't make antibodies.
• 58:11
  They don't make any antibodies or they don't make antibodies very well and they
• 58:16
  get recurrent infections.
• 58:18
  So that was, you know, that was a very small, uh, well-defined, um, um,
• 58:27
  area for antibody replacement therapy.
• 58:33
  And then over time, people made some interesting observations that the replacement
• 58:43
  antibody therapy could also correct or improve.
• 58:52
  Um, autoimmune conditions. This was originally defined in a, in a, in a disorder,
• 59:00
  in a hematologic disorder called ITP, idiopathic thrombocytopenic purpura,
• 59:06
  where the platelet counts go way down and people get bruising.
• 59:09
  Um, and, and they showed that when you gave the antibody replacement that the
• 59:14
  platelet counts went back up.
• 59:16
  And, and so this basically opened up a whole area,
• 59:21
  over the last 40 or 50 years where the IVIG or the antibody replacement therapy
• 59:30
  has really exploded and dwarfs the original indications for replacement in patients
• 59:39
  that don't make antibodies.
• 59:40
  So it's easy to understand how if you don't make antibodies and we give you
• 59:46
  antibodies from somebody that does make good antibodies, that you'll stay free of infection.
• 59:51
  But it wasn't clear initially why it corrected the platelet count in ITP or other blood disorders,
• 1:00:01
  why it suppressed the inflammatory response in some of these neurological conditions and other things.
• 1:00:09
  So now we know that.
• 1:00:13
  Probably the two main areas where the antibody therapy works are,
• 1:00:21
  number one, because it has strong anti-inflammatory activities.
• 1:00:28
  So it feeds back on cells of certain white blood cells that are involved in
• 1:00:36
  causing inflammation and signals them to stop.
• 1:00:40
  So it's an inhibitory signal for inflammation.
• 1:00:44
  Secondly, and probably equally important,
• 1:00:48
  especially in things like PANDAS and other autoantibody-mediated diseases,
• 1:00:52
  it dampens or shuts off the production of new antibodies, including the autoantibodies.
• 1:00:59
  And so it has a dual effect, which is very powerful.
• 1:01:06
  And combined with the fact that it's a very safe therapy,
• 1:01:12
  you know, it's essentially a natural human product that's repackaged,
• 1:01:20
  that it makes it a very attractive therapy, you know, for these conditions.
• 1:01:29
  Is it made from someone else's antibodies? Yeah, basically, it's a product of the plasma industry.
• 1:01:40
  So you've all seen plasma donation rooms popping up in strip malls and other places, right?
• 1:01:49
  And what happens to that plasma? Well, that plasma goes to a number of big companies that pool it, test it.
• 1:01:58
  Purify the various products, of which the antibodies are one of the main ones.
• 1:02:04
  And then it's sold as a product for use for these kind of conditions. Yeah. Wow.
• 1:02:16
  From your lens, Anthony, as an immunologist with so much experience,
• 1:02:21
  What's the take-home message for the community pediatric clinician who's watching
• 1:02:28
  or listening? Well, I think...
• 1:02:33
  Um, the, the, the take-home, I mean, I think we, I think we,
• 1:02:38
  we've been over the take-home message, uh, already, but just to,
• 1:02:42
  to, to re-edit, to reiterate, you know, it's to, um,
• 1:02:46
  be, uh, be aware of, of pandas, uh, pans.
• 1:02:50
  And, you know,
• 1:02:56
  when you see a patient that has an acute change in behavioral or neurological
• 1:03:04
  symptoms after an infectious episode.
• 1:03:09
  You know, consider that in the differential diagnosis.
• 1:03:15
  You know, we're not superheroes. You know, we don't, you know,
• 1:03:22
  this didn't take any kind of clairvoyance or, you know, anything like that.
• 1:03:30
  It's just a matter of being aware and being open to possibilities and,
• 1:03:44
  you know,
• 1:03:46
  trying to do what's been in the best interest of patients.
• 1:03:50
  It must feel so gratifying or how
• 1:03:52
  how does it feel to know when you've made such a big difference in a family's
• 1:03:57
  life in this child now adult ryan the adult his yeah it's all better it's it's
• 1:04:03
  it's it's very gratifying it's uh um humbling um at the same time um.
• 1:04:13
  Yeah, I don't, yeah, couldn't put any different than that.
• 1:04:19
  And what about this family who just, who didn't, the parents did not give up?
• 1:04:26
  It sounded horrible, but what is the take-home message for parents?
• 1:04:32
  Do you want to say anything there, Dr. Infante?
• 1:04:37
  Um, you know, there, there's a, there's a fine line, uh, between, um,
• 1:04:51
  Well, maybe that's not the right, right way to say it.
• 1:04:54
  Um, yeah, uh, uh, parents are, are natural advocates, uh, for their children.
• 1:05:02
  And, and I think, uh, doctors, pediatricians, other doctors have to,
• 1:05:08
  uh, uh, appreciate that.
• 1:05:11
  And, and every once in a while, you know, although I think, uh,
• 1:05:16
  you know, as professionals, We don't like to think about the old question,
• 1:05:24
  you know, what would you do if it was your child?
• 1:05:27
  Sometimes you actually do have to put yourself in that position and think about
• 1:05:36
  how you would respond to that.
• 1:05:39
  And we all know the saying in medicine, if you hear hoofbeats,
• 1:05:43
  it's a horse. Is that right?
• 1:05:45
  Not a zebra. But in this case, is it that this was the zebra or is it becoming,
• 1:05:50
  it's not. I don't think. Oh, I have it right here.
• 1:05:52
  So, so this, this, this pin, can you see it?
• 1:05:58
  It looks like it has zebra stripes. Yes. You see the black and white stripes.
• 1:06:02
  So, so this is a pin that was promoted by the immune deficiency foundation.
• 1:06:09
  And they had a campaign a few years ago. They called it the zebra campaign.
• 1:06:14
  And and and basically the the
• 1:06:17
  the point is just as you uh mentioned is
• 1:06:21
  sometimes when you hear hoof beats they really are zebras and and
• 1:06:24
  you know so if you if you dismiss that out of hand um you you know you're gonna
• 1:06:31
  you're gonna you're gonna miss some important opportunities to uh intervene
• 1:06:36
  in in a positive way uh now yeah most of the time they're going to be horses uh but,
• 1:06:43
  Again, you have to be aware.
• 1:06:47
  Dr. Anthony Infante with University Health and UT Health San Antonio,
• 1:06:51
  thank you so much for being here today on Pediatrics Now. This has been so great.
• 1:06:56
  It's been fun, Holly. Thank you for having me.