Hello and welcome to the If We Knew Then podcast. I’m Stephen Saux.
And I’m Lori Saux.
And today we’re joined by Dr Mona Patel Gera of children’s hospital Los Angeles.
One of the scariest things about receiving a diagnosis of down syndrome is that laundry list of possible diagnosis that is accompanied and today we’re gonna talk about that we’re going to go down the list what we need to know what we need to ask and we’re gonna bring some insight and information and hopefully a little lease please welcome doctor Gera good afternoon how are ya it’s so good to see you you doing OK more really happy that you could be here with us today because we’ve been looking forward to it I am very excited as well what did you tell us a bit about yourself sure tell my name is Mona Patel Gera I am a practicing pediatrician and I am a wife and a mother of two beautiful children and %HESITATION I’m so honored to be here to be able to talk to both of you today and I believe when I first met the both of you is when my son CHL leasing class in first grade with Leon and it was just such an extraordinary experience I can save nationally and personally for me and as a practicing pediatrician I do care for many children with special health care needs but my world sort of came together when my son was in class away Liam who has down syndrome and he came home one day and he actually said mama Liam’s mom came to class and talk to us about something called down syndrome and that %HESITATION Liam is going to be in our class and that we’re gonna be friends and we’re going to learn all about everything so I said okay this is great what was really neat for me the first instance was on sale came home and said guess what mommy went to eat pizza today and when I heard that I sort of stopped in my tracks because that’s where he’s at work great when I talk about AP adept if Pete you know speech therapy and occupational therapy and all of these things are sort of my bread and butter world that I think about when I’m at work but at the time here my son in first grade say I went to EP with my classmate so what what is that what is that what was that Mike and he said money it’s called adaptive P. E. I was able to go with Leon %HESITATION and I said okay what is that active P. E. mean how is that different than the P. E. you do and he said well we work on different kind of skills that you know to help me and with his balance and we played with a really big ball and we got to bounce the ball back and forth and he was also able to walk with me and to some of his other therapies and I just thought it was brilliant when I talk about inclusion in in %HESITATION in mainstreaming when our children with special health care needs and specifically been down syndrome I’m a big advocate to having our children in all of the mainstream classes because they see a bi directional educational value there %HESITATION not only for children with intellectual disabilities but also the learning at all children can gain interior engine and perspective patients just kindness in in humility those are lessons that as a parent I feel like a very tough to teach something that you you know in body and friendship I think is wonderful I talked to date on all the time about Liam and in he always brings up how it was fine because we would sit at the table with Liam and we were having lunch together and we would play ball with all of us together and I’ve been meaning to look up this world contest inclusion because I don’t know if that’s a real world we’re not but in first grade Sagal kept saying this word name Justin collusion and he would tell people notice inclusion notice inclusion and I asked him one day what does that mean to you and he says well you can’t just exclude people of very different or if we all don’t know how to play different games because he said I learned from my friend Leon maybe he doesn’t know how to play some games he’s like mom I don’t either and it doesn’t matter in we’re all going to learn together and it’s fine and I feel like as a mom I learned so much that M. as an advocate and a pediatrician it’s an example that I bring up when I talk to many of my patients that I care for with down syndrome because it there’s so much of value that you can have when it comes to mean to my child %HESITATION degree five children with intellectual disabilities depending on the type of intellectual disability you know whether it’s mild moderate severe in different school systems it depends on the type of environment that you’re in that type of you know the how many P. and teachers are in the school settings and I constantly worry about if you have a big wide ranging scale of children that are put into a classroom I weigh about mate my patients that have higher abilities and whether there’s concentration and focus from teachers on on that subset and that’s why that’s one of the things that I very much right many IDPs you know individual education plans I always try to even attend IP’s on behalf of my patients to talk about this because all of these approaches have to be individualized to the patient I am not a believer in consort of cookie cutter plans that are made often times unfortunately for children with special health care needs it’s very important to look at the specific skill sets look at the specific type of therapies and one can really benefit that child and their family I love hearing that stuff we don’t because you know we don’t get to hear all the stories from big because eat lamb doesn’t come home and tell us the stories which we experienced with Sophie as well but so we don’t get to hear all of those stories and I had even forgotten that I had come into class and talked about down syndrome and I love hearing sage will talk about this inclusion because whether it’s at a word it’s a word now we send our kids to school and we hope for the best but honestly the first day of school for us is so different than neurotypical parents we have different worries you know and so just to think that Liam had such an advocate you know sage %HESITATION stepping up and just his insights I mean say does a very special person anyway I’ve always thought that but just his insights about not every kid knowing the rules of the game and having a friend who is near a typical on lamb side who can be his voice it’s really important and I think that that translates it does translate into the future really of society and it’s wonderful to think about because we talk about a very important part of Liam being in a typical clashing with his peers is that he’s modeling some neurotypical children and their behavior but it’s a two way street and it’s nice to hear that there’s modeling on both sides well because we fight and it’s always and %HESITATION it when you go into a ninety P. because you talked about the IP and sage %HESITATION wrote really lovely letter one year for Liam’s IP and I think this year when we have our virtual I. E. P. maybe I’ll tap you again to see if you can come to our I. E. P. because we’re always fighting and I parents fight so hard and our question is always why do we have to fight so hard when the benefits for everyone are there and I feel like I’m fighting for this right like this privilege almost begging to have my child present as and and it sets this tone of his less than other people he has less to offer but that’s not what it is and you forget that as a parent but that is definitely the tone sometimes when you sit in on a I E. P. because you’re there you the reality of a ninety P. is to make a plan for your child and what it really comes down to most of the time in every experience even from any parent that I’ve talked to with IT peas and I talked to a lot of parents is that you go in there you decide what you’re going to fight for you have to let some of your interests go and that’s heartbreaking as a parent to go well I got this but I didn’t get into the speech he needed because all of these things have such importance and impact and it doesn’t feel like this is our child let’s support him it feels like you’re going there like all over saying like it’s charity yeah and Liam has something to give all children have something to give them their value there’s there’s value there there’s they had their valuable to the classroom like every life is valuable but it doesn’t that’s not the tone the school system really puts forth I completely agree with you I think what you guys are talking about really at the crux of it is advocating right as parents that’s what you do is you advocate and unfortunately even when it comes to the EP process it’s clicking hunter mentality and a lot of times that you have to go in and bag for that individual sort of plan that it acts for Europe your child that’s the reason why I think Siegel that year that we talked about it when he came home and I told him that you know Lee and was going to have this I. E. P. it was really frustrating he said well what what what can I say about it and what about my feelings about this and I was taken aback by that because exactly to your point the value that Liam brings for other children is often never even considered when we think about I eat peas in even though I don’t I don’t think it was two thousand nineteen is a couple years ago he just wrote a letter thanks and sit down and write your feelings and why this is important that we M. should be in your class or be in class with other kids in there is that mentality that I think is a lot of times forgotten and that’s one thing from eighteen thank Frank that special friendship that was developed that you can schedule to this day I talked to him about Liam and she still talks about that letter still talks about his friendship how valued how important it is and how much he’s learned from your son in those are lessons that I don’t think I could ever teach him it’s something beautiful that your son taught my son in that house to be brought up a ninety piece and that has to be recognized with people who make those decisions and that’s the exact voice that I when I bring tiny piece is again not value of just humility and kindness and what we learn from each other in that respect it’s more of a lot of times than any of the therapies that we do not really intervention is what we talk about early recognition therapy therapy therapy constantly but there’s also value of therapy and just friendship and your peers that collegiality and playing together and and all of that I remember you know you told me that C. gill between I think first and second grade glory he told me that we %HESITATION asked for Seattle over the summer that was beautiful you know and I wish we did more plates and and could be completely open to doing that but there’s so much of their parents learned in valued and so important you know at the end of the day I I always feel like it’s a pediatrician mom if I can raise my children just to kind Pieman being spanked my god in in those are the lessons that don’t come from school books come come from those things they come from just basic human experience and that’s such an important value that your son brought to my son at that early age and I can’t thank you enough for that person I I think that it’s wonderful that Seijo got frustrated or was was mad that they have had to fight to be in a classroom because I do not believe that people know and understand that that is the situation you know we we are fighting to have our kids get educated and and I can say that people don’t know and understand because when ever I tell people but even when I say every year I hire a lawyer to sit in my I. E. P. what I like to do something else with that money yes can I know I have to because the one time we showed up without a lawyer they tried to strip away our rights and just tell us they were gonna take him off curriculum just tell us what they were gonna do no discussion it was not on law it was actually unlawful the way they did it but not being lawyers we could only say no we don’t agree to that but we couldn’t we could have at that point if we were lawyers remind them what they were doing was unlawful but we didn’t know and so you know that happens to parents all the time that’s the patients I care for many of my patients can’t afford lawyers so the only things that I can do as their pediatrician is I can write letters I can go in and talk about you know what the I. D. E. A. act and what all of the different rules and regulations are in teach about we know what those days and limits are if you don’t agree with your I. D. P. don’t sign it in there’s different things that you know we try to pull together an advocate for but it’s so important because you bring that up many patients that I serve and families I care for don’t know that don’t understand this and system don’t appreciate what can happen and often will sign these things because they can if there’s just so many rules and regulations around this that unfortunately there’s not always folks there to advocate on behalf of our children do you have any recommendations for those parents because it is it is true that people don’t now what I always recommend actually is to go to our regional centers %HESITATION who are really wonderful at times with %HESITATION educating and being able to see that there are also many different pro bono legal experts in the community and those are experts that we often timeline went I think educating into my chest as much as possible so with my family so I always rapping and %HESITATION our advocacy teams and social team social work teams just to be able to engage sit down and talk about okay what is this process what is it and what are your rights what are the different levels of support we can give and how do you align with your health care providers in your community together to help and then when it really comes to push and shove them that’s only say okay do we need to get some of our legal experts that we happen to work with you know there’s the neighborhood councils and all of them that will get involved thank you are the ones that really know the rules and regulations and I can go in and help you just you would hope it would have to go to that but unfortunately it does go to that you know many times but that’s what I recommend is just educating as much as possible but the process is because like I said many families just don’t know so we will sit down and talk about %HESITATION keep these are your rights this is what the normal process looks like you’re allowed to have this type of review you have to sit down and read everything and go from there and I think again every cases individual where I work fortunately we do have an advocacy team that can kind of jump in and help many of our family sort of translate this information is there a place where parent because we have listeners from all over is there a place where parents can go to see some of those resources the online online you can email your Google pretty much anything that trusted resource if I would do working at the regional centers they have many many different links there %HESITATION within that area and I’m dancing grounds this technically it’s one of the diagnoses that have written that we tend to lean on depending on you know which decal in which regional center is available I would say go there first again it depends on the age of your child and then see if we can be matched reg armiger which you’re tracking help start kind of supporting what’s going on you know and I always stay aligned with your pediatrician culturally the pediatrician acting right here whether it’s a prenatal Baystate to understand what this diagnostics maybe an hour things that we have to work together and raising your child with your family with the best opportunity and potential and right and then going into these discussions because that’s what you know your pediatricians are going to be trained in doing this work and you’ll be able to be armed with the resources to help direct you call regional center would be California and I know most other states have have some something that they could go to but in the end I would say again aligning with your pediatrician or your health care provider they’ll be able to give you direction especially when it comes to you know our children with developmental disabilities what is your personal experience with children with your patients with down syndrome my personal experiences I have so many children that I care for that I have been working in this field since I started training two thousand three so ages me what seventeen eighteen years I’ve been doing that so I’ve had the honor of seeing children prenatal testing for it now fifteen sixteen years old I have new babies that I have in my practice and I use the health supervision kind of guidelines with all of my patients and family so they reckon academy of pediatrics put together this help supervising guidelines you can actually find that online %HESITATION and read through it some of it is some technical language about the medical things that we look for but it it’s really great because it breaks down every single age set what you should be asking your pediatrician and with the pediatrician should be looking for an even in a table format all of the stuff that we track so that’s something starting with my prenatal visit I go through with the families and say this is my job to make sure I’m checking all these things for your child but gosh my children with down syndrome I always tell families from the beginning there’s so much variability of what you see so as you started out saying you know we’re blessed Liam doesn’t have a lot of you know the heart defects or in the GI issues in such a spectrum when it comes to down syndrome %HESITATION I’ve had children that had very severe cardiac conditions very severe GI conditions hearing last I’ve had some children that really have not had a lot right I have some that are in high school right now that are doing great I had one last week the seventeen year old and was upset with me because I told him we have to watch his diet he is just kind of slammed the door and says that he’s mad that I always talk to him about his eating in town that you have to drink water but he likes drinking is chocolate milk so it’s a it’s a large spectrum that I see a different children with you know down syndrome but in the end of the day one thing I always say is your child in the impact in the wind Jedi is based on the family support that that child tax early intervention with therapies the land but the foundation that you have as a family for your child that’s going to add to the longevity that we see with our children and adults with down syndrome by far %HESITATION and it’s because of those medical things are just so desperate you you know it can be very very rare you can have a child that has not multiple different things and then that would be our jobs you know the medical professionals to take care of those things that are you know the GI illnesses or you know if we need hearing aids we need classics we need different things but overall how much how does with down syndrome it’s that family unit units the support in the lab so that’s from the prenatal visits I tell my families all the time I’m gonna help you fix that and help with the medical stuff but we’ve got to get the social supports in place we had to make sure that we do this together we have to make sure that that child being raised in the most loving environment possible we had to make sure we engage in work together and collaborate to advocate for your child whether it’s schools whether it’s being in the sport whether it’s whatever he has we’re gonna work together and I had one patient that I was so proud she want to be a cheerleader in high school and we wrote a letter and she was able to make it on the cheerleading team so I have that picture %HESITATION I’ve heard there in her uniform and she has been my patients and she was five years old so my experience has been wonderful I have had some children that have been quite sick that happened fortunately past I’ve had far more right that had graduated are now and I have one that’s working and good well I have many that have transitioned into just wonderful adult nights that have just been so thankful to be involved in their lives and help care for them with that basic recommendation seems like such a typical thing you would you would recommend that for any child you know yeah and that’s a promise I make with every child I care for whether you know they have down syndrome where they have you know anything else it’s the basic promise that we collaborate work together an advocate for that child’s life no matter what so we can put a link to the help supervision guidelines in our notes that would be fantastic we’ll make sure that we do that so parents can look and I think that’s part of it because you get a diagnosis which is unknown or based in stereo types and information that’s outdated you know I don’t know if there’s a way tend not if you don’t have information to not feel fear because the information that you do have is usually very negative and very limited if parents have information then they can go forward on their own path that’s the most important thing is one of those documents that I always give a photo copy and I asked my parents to just keep it with them and on my annual visits are you know early on monthly T. annual visits we go through the check list together and there’s a beautiful table and it actually says when you should check these labs they have to check when you’re entering sports you think about you know some instability you can see in the spine when they around three to five year olds are they having any trouble breathing because you might think about some sleep apnea so all of these different things it’s age specific guidelines that was put together and it’s wonderful and I think it’s wonderful for all parents to just read through that but then again arm back information with your pediatrician and hold each other accountable so there are a few different things that you mentioned you mentioned GI you mentioned the heart the ears and correct me if I’m wrong at leukemia %HESITATION was something and children with down syndrome that was one of the things that was a higher chance with a higher chance higher chance so there’s something called transient my low proliferative disorder which basically means there’s a propensity for the white blood cells to kind of be ramped up still have higher levels when children are young when they had down syndrome and it’s something that again we’ve checked the blood at certain intervals according to those guidelines and then there’s about a one percent risk of leukemia later in life you know in my ears I care for children to death right fortunately not gone when having had my children diagnosed with that yet but it again that’s why in your in your case it’s it’s something that we screen for the same as I was clean honestly for other children as well so that the risk of leukemia is about one percent in that would be probably the most severe consequence medically that we think about the more common things that we see as you mentioned hearing loss %HESITATION hearing hearing factions repeatedly vision is that something very very important that we check annually the sleep issues because of the weight you know our children with down syndrome the way the nose and the mouth in the bridge kind of connects together that’s something that we look at as well and then when children are born early on that’s when we’re putting regressed about looking at sort of the heart and the GI system because those can usually present early on one more thing that thyroid is something that we watch for because can general hype hypo thyroid is common %HESITATION and then it’s something that we watch over time the biggest other thing that we watch for children with down syndrome tend to have something called type %HESITATION Tanya which means that it’s not that they’re weak but the tone of their body is more relaxed so sometimes you may see difficulty with eating %HESITATION and and what kind of surprises from their cell again it’s something that you just monitor and watch and some %HESITATION children may happen you know different levels of the hyper it’s a town or a different levels of hearing impairment or vision I may not have any these are all kind of risks of all of these things and that’s why we collaborate with parents in in check constantly when you talked about leukemia you said that it is more prevalent at a young age it’s it’s a transient high blood cell that happens not leukemia so there’s this transient process that you might see the blood cells go high and people might think or no this is looking at but it’s not leukemia we usually see later on and that’s why we have these can you will when we do work physicals we tend to check the blank %HESITATION for thyroid in for it you know risks of leukemia the other things that you would check for risk for leukemia for any child would be if a child starts to have bleeding easy bruising starts to become pale having night sweats and fevers tonight and weight loss those are general symptoms we look for leukemia at any age group so that tied in with the annual blood tests that we check would be what we do when we think about it yeah you see this is my question like I remember like honestly until you just said that to me right now one percent there’s been this fear in the back of my head since Liam was born because one of the things that were presented to me was he has a higher risk for leukemia and cancers I guess the hard part for me as a clinician like if I put on my clinician Dr hat one percent isn’t that high you know in the way I frame it with my family is okay I’m a hundred kids ninety nine percent of times you’re not gonna have any problem it’s one it’s a one percent issue right which when you extrapolate that out sure but it’s not something that I ever would say to a family that I would hold and worry about constantly and and be trapped by that diagnosis let’s talk about that because there are families that receive that diagnosis and I can only imagine what that diagnosis is because it’s a it’s a hard it’s a hard road to travel to remission and it’s a lot so can we talk a little bit absolutely so it’s looking me Allen from my any of the cancers if I think about that you know the childhood cancers that we see being diagnosed with leukemia if you were to be diagnosed with any type of cancer unfortunately it’s one of those that we actually have pretty good protocols in in going into remission and when it comes to childhood cancers leukemia wearing out about ninety three to ninety four percent getting into remission with our children now the therapeutics are pretty tough you know when you think about chemotherapy and whatnot but her children do quite well so gone is the day that when we think about leukemia we think of it as you know this sentence it’s gonna be like other types of cancers that we have in our society so when I think about our children with down syndrome in the one percent risk being with Kenya also in the back of my head I think woke me up pretty good treatments nowadays for that and you know we always hope that our children don’t you know have this type of disease diagnosed but if they were going to it’s one of the ones that it’s okay to have because the treatments are pretty good what do you tell your patients when you have to deliver that diagnosis it’s one of the tougher ones it’s hard because the children I care for you care for children that have transplants I have children that have cancer I have children that are dialysis dependent so the whole spectrum right so for me as a pediatrician any diagnosis I give is always tough to sit down with the family but I’m honest and I tell patients you have this new diagnosis I don’t know what the treatment is going to be like because I’m not the specialist is going to be necessarily giving the treatment but gosh I’m gonna work with you in a minute the entire time along with your specialist to see how we can have the best outcome for your child and we’re gonna be there every step of the way together our goal is to make sure that that child’s outcome is the best that it can potentially be and then I usually just stay quiet and I let that diagnosis thinking with families and just support as much as we can but I’m honest because I don’t know what the world’s gonna look like you know and I’m speaking this way as a clinician who’s had patients past and expectantly through treatment and I’ve had patients who have done incredibly well some that I could have never predicted and if there’s any physician who sits there and says they can predict the future they are lying I think you have to be honest about that and I realized long ago my job is to help a family in a child had the best outcome in life as possible whether it’s gonna be a full life ahead without illness or whether it’s going to have an unfortunate illness and how can I make that end of life process is tenable nine painful supported as possible and that’s the reality do you have any advice for parents my advice for parents is to as much as possible be there to support your child be transparent and be honest depending on the age of that child %HESITATION if a child is older try to make some of those decisions together be honest and explain every every child that I’ve had that’s I would say even older wants to know what’s going on with your body they want the truth they want to be able to be there and help make decisions and as hard it is as a parent to be involved and discuss these things it’s very very important I think part of it is also for parents to work with your health care professionals the more you can collaborate the better it will be but I think that’s the best advice I can get because it is a world that we all hoped for Titans these things for any child trait any person but unfortunately sometimes that does happen but it’s being transparent being honest being direct having questions ready always always never feeling bad that you’re bugging anybody with your questions he can be back for you might even think this is a stupid question I can I tell my patients all the time I have stupid questions constantly constantly and I’m a doctor and I’m a mother and I ask my own pediatrician these things that I should know but I also know that when it’s my son or daughter that doctor part goes away and I’m a mom in that’s okay Sally say when you have a diagnosis you have anything make a list and ask anything you need and demanding advocate for your child police are there any parent supports that you can recommend because I know it like when you have this diagnosis and it’s taxing on on a parent %HESITATION parents I talked to who have more challenging diagnosis is they I I just staff I see it where on them and I honestly as a friend feel helpless you know I I can listen but is there any resource to offer up those resources are gonna depend on the diagnosis %HESITATION whenever there’s a deep new diagnosis of anything I always recommend parent support groups because honestly I can help support from that pediatrician and in health care provider and but the comfort you can have from another family who has a child with the same diagnosis is the most incredible support that you can get quite frankly so that’s one of the first things that I try to do is link my families with other families always reach out to the other families and see if that’s okay and I can tell you a hundred percent of the time the LCS please have them reach out because I was there and I get it and I can talk to them and I can say yes this is scary and this purpose Kerry but you know and now my child doing this or he made a decision this plane this actually worked and we went against the health care team this play it’s that type of friendship and bonding that you gain because you’re going through this sort of shared experience %HESITATION that’s really important to be able to lean on each other so yes and within any type of health care community in treatments you should always ask for what other parents support group resources there are %HESITATION I know online there’s many different types of groups in Gulfport %HESITATION I think those can be very impactful especially right now during the pandemic just to be able to lean sometimes I worry that there could be also fostering misinformation in this guidance in time so also it’s important to always go back to your health care provider in talk about this stuff I’ve had patients come back to me and say Hey I learned this in my Facebook group is this true or not true in a sale you know what I don’t even know that let me research that for you or I’ll say you know what yeah actually that is true so I always kind of share that together with your health care team I think all of that information is good and that support is very important thank you we’re just I just like to have secure so you’re amazing you’re such a gift I can only imagine the gift you I mean we have a great pediatrician and I’m looking at you going you’re you’re amazing I I hope that every parent has that kind of support and if they don’t then they seek it because I I you know a lot of times it comes down to money right do we have health care do we do we have the ability to seek out those good doctors are those good supports and that’s the most important thing as a parent is to arm yourself as much as possible with that knowledge right and if you feel like your health care provider that you’ve been given or you’ve chosen is not collaborating with you not listening then you need to find another one it is it’s the most important thing to be able to work with your health care team I think that’s hard for parents though it and I think that’s one of the things just like education that we we go into it whether we have another child who’s neurotypical or not we have a certain relationship there’s an expectation there are there’s things that you wouldn’t fathom you know having Sophia wouldn’t fathom that I would have to sit and fight for her to be in a classroom or have to always prove who she is and you know she was able to fail so much she was able to struggle she was able to do all of those things that if Liam had been my first child it it’s it’s a totally different experience and you you just don’t expect it right I I often referred to it because Sophia’s journey was she did have challenges I can look back and say well they’re both experiencing the same thing why was she allowed why why did you never look at me and say we’re going to take her out of the class you know what failure built her for success that was supposed to be a launching pad to gross I feel like sometimes when we look at our system of children set up for children with developmental disabilities there’s a different set of a microscope or lands placed on those children it’s sort of like you’re waiting for them to fail you’re waiting for them stay up you know what no they can’t be in the classroom because their destructive let’s pull out because it’s easier right it’s easier and that’s the part that’s really hard in really challenging and you’re completely right you know their school systems that right now that will let children fail I had I found out I had a fifth grade child in my office two weeks ago we didn’t know how to read fifth grade and I’m sitting there thinking how did you get past to multiple other grades I sat there with the mom instead did your teachers say anything to you how did your child advance in the screen if they didn’t know how to that was really tough for me to understand for that child how that even happened but then I also on the flip side think about my other children with mental disabilities those are the two that I’m constantly fighting the schools justice you are and I see that even in my practice constantly what with the with the reading and that we were very aware early on because as early as kindergarten they were saying pull them off curriculum and I was like come on its colors come on up but but I think that’s the thing is that the the road is usually pull them off curriculum it happens you think you don’t have a voice you don’t know that it’s unlawful the way they just do it there’s so many things that have to go into playing a child offer curriculum right but D. I. A. use the word bully they they really they bully you to thinking that that’s it’s not a choice and you don’t participate in it so then your child is off curriculum and I I realize there are a lot of children of curriculum and it may be good for Saturday night and I’m assuming there’s going to be good for clients for science but the light that shines so brightly for us is you’re not accountable to our child right now if we pull them off curriculum where is that accountability how far will it fall and Liam reads Liam can read he can spell he can do math the date we had to find out from someone else does for calculator and another parent told us about a calculator and he’s right there in the class participating you know because he has a calculator maybe even better than some of the students who are struggling %HESITATION are struggling and could use a calculator once I got past the adding of just single digits and then you could break that down into into multiple digits when I got to that being just an exponent of another part of mass instead of having them take all the time to do that you can use the calculator to that and then then he’s allowed to go on to the next step and figure out fractions or you know where all this right but I think what you’re speaking on was if your doctor isn’t supporting you the way that you need to find another one and I think the challenges for parents that that’s a that’s a frightening thing and I’ll be honest with all the other things that are going on and all the other ways that you’re being challenged and having to rise above and everything in a day it’s hard to question your doctor a better way to think about it make your doctor listen to you I mean it’s so important to me as a physician yes I trained to do this work but it is my honor and my privilege and I’m humbled to be part of a child’s life in a family’s life that is how we think about our jobs as pediatricians you know I’m an advocate first a pediatrician I mean that’s really tight and tied together that’s what my job is so when I see the words you know make sure you’re you have the right physician or indefinitely station that you have to make sure the hearing you that they really hear you and that you’re sitting there and you’re able to advocate and I and I do realize not everyone is able to change their physician but I think it’s very very important that you bring up all issues and you make them listen when you’re on this path like you forget you don’t think to question the school because you’re like well obviously they’re doing the right thing I just had so many conversations last week with a mom who was just like well they said let’s do this and this and I just thought they were going to do the best thing for my child so they didn’t question anything another further down the road and it’s a lot of work for them they have to undo a lot of things what I’m trying to say is that that to empower parents to it you have a voice you know do you tell every parent like follow that guy and if it’s not right you can go somewhere else it is a I will we were looking for and %HESITATION tears right out with it %HESITATION tear PT when Liam was very tiny I mean we had people come in we had somebody come to our house use the R. word I mean and and I just every and I felt horrible every time I had to say I’m so sorry bill but I’m gonna ask for not this one just doesn’t work and every time I felt like M. I. rocking the boat am I being difficult but you know then you get the right fit and you’re like this is what it’s supposed to be because people can only do the job where they come from and if you’re starting to see a perspective of your child that they’re seeing the way their senior child doesn’t fit the way with with the way that you see your child then you definitely need to find that marriage of someone who does because you’re not gonna get the support that you need for your child to reach the potential that you know that they have absolutely immuno your child better than anybody out there that is the number one thing even when we’re talking and teaching our pediatric residents just because you’re a physician because you have that empty behind your name does not ever mean you know more than others if a mom or a dad or a care giver comes in has this concern has to pay it %HESITATION doctor I think you’re forgetting you better stop in your tracks and listen and I always say that’s the biggest thing I worry about is one of patience you know family tells me I have something wrong I’m not listening or I’m missing something that’s what makes me stop right now right in and start over because as I recognize now that family knows them way better than I do I am and then I ever could thank you so I want to move on to some of the other possible medical challenges and I think about the the the leukemia leukemia and all that it’s just it’s such a I wanted to really talk about it because I think if we don’t talk the change doesn’t happen right and people can benefit from just even those a calming word or some advice or just knowing this conversation with you today the one percent I mean I’ve carried that with me and Liam has an appointment next week for his annual and they said they were gonna take blood work and I have to admit that in my gut I just I worry so much and because it was presented to me so much bigger than that right you had mentioned at G. I. N. heart they happen and and I apologize if I get it wrong and I’m not a doctor %HESITATION but did they occur more when a child is premature yes they can occur more in many different conditions can occur more when a child is born prematurely because that can actually cause a premature birth and depending on how severe any type of %HESITATION GI type of issue there is there any kind of cardiac lesion or whatnot so those are typically found pretty early what we do is we have course lesson from armors %HESITATION we checked you know look the baby skin if they have any clues can there some congenital heart defects that are more common in children with down syndrome and those present pretty early so those are the things that we check when babies are born to check their oxygen levels we check how they’re reading and we usually do an echocardiogram which is basically an ultrasound of the heart to see what that you know if we can detect any lesions I’m thinking for the GI usually the first thing we’ll see is we’ll see feeding difficulties are we might see passing a stool not happened so that’s one of the biggest things we look for abstinence babies are born they have to pass what’s called meconium which is that early black tari stool you have to pass that within twenty four hours and if you don’t have that still come out that means it could be a sign of sort of a blockage in the GI system which is called a Tricia and that’s something that we look for which can be seen in our children with down syndrome so those more severe type of things present early and those are things that oftentimes will require surgical intervention depending on the severity of that what we talk about pre maturity and Liam was born at thirty weeks so just the ease of knowing that medicine today is pretty amazing yeah pretty amazing because we have these things that we check as a routine for all babies that are premature and born at term %HESITATION we check these oxygen levels we always listen and check the baby’s within twenty four hours of birth in especially with our children with down syndrome we always get an echo cardiogram we always get happiness studies of the GI system because those are those early more severe things that we have to fix right away so we will be watching very very closely we’ll be watching that baby Brady how they’re feeding because these are all signs look for right away I was really scared knowing that Liam is going to be in the Nick you knowing that he was going to be early and that’s frightened me and I remember being in the Nick you maybe after a week looking back we’ve been easier if he hadn’t spent thirty five days in the neck you but knowing that he was there being taken care of and it was so intensive and there were so many specialists there to see him and nurses there to guide us and answer our questions I look back and it was a valuable time of his early life that we were able to have that really to her %HESITATION check out you know if you will what do people need to know about having a child being born premature and what do they need to ask asking all of the questions of what’s going on with their baby specifically so when a baby is born premature the biggest things we worry about depending on how premature is how their breeding and how they’re going to be eating and growing right we caught feeding and growing basically are the biggest things sell depending on the level of pre maturity is when we think about you know the lung function in the breeding and then always always your guide %HESITATION tight with your car still every single day constantly when you’re in an icy use babies are monitored constantly we’re checking that heart rate and blood pressures were checking everything so you’ll see a lot of teams and things going on %HESITATION and that’s what we’re exactly watching out for but I think the most important thing for families that are in the queue if their babies are born prematurely Charlie is exactly that ask your care team what’s going on ask your nurses to always always keep you informed and ask those questions of making everything can be explained to you because that is going to make that process so much easier and better so what about thyroid in general there is again a risk of about one percent in babies that are born with down syndrome %HESITATION and that’s something that we check right away thank you wait actually here in our state and many of the states as part of the newborn screening so that is something we automatically check for babies and then depending on what the level looks like when it comes back we will be check at certain intervals whether it’s within a couple days and then repeat check within a week can be technical sometimes it’s either way depending on the child is sick when they’re born you can kind of fluctuated doesn’t necessarily mean there’s an issue with my right so it’s something that we will check over and over and if we do find that our child has some hyperthyroidism we use medication supplement pretty early and we and our children with down syndrome to have a higher incidence of having hypothyroidism which means that you’re firing kind using functioning as optimally as possible but there’s medication that needs to treat that and you would typically be followed with an endocrinologist which is a specialist in performance and we drop a line in well kind of modulate that %HESITATION dose of the medication depending on what the pirates level should be irate is a hormone that’s very very important in just gross overall %HESITATION impacts also your skin your hair impacts and when you’re still kind of coming out of your body when you have constipation or not %HESITATION and then also has an impact on a child’s a week or an adult wait so that’s not those are all things that we monitor very closely the blood level but also how a child is growing and will kind of move around that dose of the medication if they have type of is there a certain age that that was start to show itself I read is one that can appear at any time to be honest I’ve had patients with down syndrome who actually never had an issue with that right so when we did our annual screens of the T. S. H. which is a thyroid stimulating hormone it was always normal %HESITATION I’ve had many that have happened in Los irate levels that we’ve had to supplement whether they were at each the young infant age or maybe later on around you know five six years or even later in the teen years and that’s again why we monitor that gross if I noticed that my patients and growing as well are gaining you need too much weight having issues with constipation for me that’s one of those two boxing okay let me go and check this to make sure that it’s still on par and then if it you know is allowed within I would start the medication and referred to our endocrinology team to help me manage that is there anything additional that parents would need to know or need to ask not necessarily I think beyond being armed with that helps the provision guideline in making sure that your health care team is checking that hormone %HESITATION is important and that’s one that we do check annually with every single day said so in in between and if you notice any of those signs like you notice your child is gaining weight too fast maybe they’re having some constipation their skin is feeling dry those are things that you would think okay let me go back and maybe if it’s in between the annual K. state we might want to check a thyroid level in growth as well as saying and also %HESITATION height so growing tall is positive but growing and wait would would be assigned to the negative yeah usually I write and this is not just for my children with down syndrome any child one of the parameters I used to think okay maybe there’s an issue with the tire yourself have a child gaining weight but not growing taller if I have a child that’s getting taller and taller I usually don’t check the buyer because that’s not the issue so that’s what I’ll you know really quickly show the family said growth curve and and say okay Hey you know what the back and they’ll hide is leveling off let’s go and check that their rate and see if that’s not the issue Williams had some hearing issues but came out to be that his is the tubes in his ears were small so he had some some liquid as years they would have some infections like a lot of typical kids you know getting to observe a couple times what do you see an inch of a downside we’re talking about a different kind of hearing issues yep so troubling down syndrome actually do see higher levels of the tightest media which is hearing faction and the reason is because of the weight the face and ear canals are formed %HESITATION that they’re just test tends to be a higher propensity of your infections that happen also the ear canals tend to be what we cost an attic which means very very small and then so it’s hard for a clinician to even look in so usually it’s R. E. M. T. doctors that will be for and they’re able to look in all the way %HESITATION and and a lot of times what do you see teams are doesn’t even ask me to take extract any fluid and having fully draining out because if you have fluid sitting there there’s a higher risk for it to turn into an ear infection and then also that can impact hearing %HESITATION it’s a different kind of hearing loss that happens with children with down syndrome there sensorineural and conductive which means that there’s blockages are there’s another reason for that hearing loss so that’s why hearing screen is very very important again that we constantly check with our children with down syndrome we actually do higher level types of hearing screens at the ones that are just in the office but I usually get when that system dated APR which is a type of a brain stem type of hearing screen and just to make sure that again on that child has normal here hearing I’m just because we knew hearing invasion or one of the top things that we do see deficiencies and with our children with down syndrome said something that very much you want to stay on top of and also for me very very important is you need hearing to be able to speak right you need to be able to have vision to be able to develop so those are things that you want to scream often infrequently and make sure because then on the you’re also doing therapy at the same time imagine if a child has a hearing loss and then you were being frustrated that they’re not engaging and participating in speech therapy or you’ll see a lot of tantrum means lack of communication this can all be because maybe we can catch that there is actually a hearing impediment so very very important to screen hearing invasion constantly I’m always secondly in two years I think of the times where he’s had some fluid as canal your canal may have not had a an infection but it would be muffled and we realize that and and I actually still he’s eleven now %HESITATION if when we do a tub bass and he submerged his head in the water even then I mean especially for the pull but if even that in the tub I’ll do a little swimmers here and is in his ears just to make sure that’s not lingering and and it does affect speech oh absolutely hearing is something somewhere even in all children between the ages of wanting to if I have any that have speech deli hearing is something automatic I check just because again it’s that whole tied with speech development again that’s something that parents can really talk to the pediatrician about do you have specific questions that parents should ask anything they should now so I think really important isn’t with any child and then especially our children our children with down syndrome very important early online that you’re interested in doing and developmental assessments so we shouldn’t be doing developmental assessments every single time that you’re going in for a well child visits so this is your you know two weeks one month to month for my six month all of those different physicals that we do early on and then we do dedicated large scale developmental assessments at nine months eighteen months twenty four months thirty months those are the ones where we go to actually all of the five domains and development so if you think about fine motor gross motor personal social language %HESITATION those are all questions that we specifically will ask in half parents fill out because that’s really drilling in case your child developing you know normally or is there something else that we need to look at and at what point do we want to start there because that’s all tied in with early intervention right is if you find that there’s any kind of developmental decline or has an child has not had development and there’s easy interactive things we can do or do we actually have to have dedicated therapy start early and especially thinking about being a developing child screen it’s still plastic up until to five years you really want to start this therapy early %HESITATION so that’s why having these key developmental assessments in in and asking your health care provider to do those assessments is really really important and again that’s all part of the physical that’s what we should all be doing vision as well as also important what do you see in in your practice with a down syndrome and vision so vision is something we’ll just ask about fishing because it’s pretty hard to do vision screening in children less than three years for any child so we’ll ask you know early on it the two month H. I’ll ask is your child tracking you know looking you’re facing moving there had one hundred and eighty degrees there’s all these technician things we look at specifically children with down syndrome can happen call dislocation of the lands in you can have sort of %HESITATION decline in patients tell all of our children with down syndrome we actually have by the age of one referrals to the optimal agents to be able to do dedicated vision screenings which they do with you know the drops and the machines and what not to be able to look back to see does the child need corrective lenses early on or not %HESITATION and then again I always tie that with those developmental assessment if I had the family will tell me early on you know like my child’s not looking in the face or meet with hearing I entered the room or make a noise in my child doesn’t move their head those are all really key things for me as a pediatrician I fail gosh you know what before he’s normal times that I do the screens I’m gonna check that hearing vision much earlier because it ties along with that development %HESITATION right there what every year are ophthalmologist ask us have we seen Liam’s eyes cross a bit you know and and then she’s gonna examine him but she asked us our opinion as well and we so it gets us to count think about it now and then you see more crossed eyes and conte so took the R. X. %HESITATION trip is a winner and ID beats inwards or outwards %HESITATION I crossing those movements can be more common in children with down syndrome as well and can lead to vision decline or it could be a cosmetic issue like leasing I know what you have to do surgical correction so that is something that always with children with down syndrome we always ask you know if there’s any I. crossing have you noticed any movements and then during your physical exam there’s maneuvers that we do when we check the eyes to check if there’s any kind of cross thank you have a child look far and you can actually see if you can make the eyes move or not in that right there will be able to tell you and that’s all part of the physical exam that our health care providers should be doing and and again I’m gonna ask you if there’s is there anything that parents should be asking as a pediatrician I hope that when my parents come in they will bring up if they’ve noticed anything at home right so if parents have noticed highs are crossing the notice that they feel like their child squinting or there’s dry ice or they feel like maybe the child’s banging their head or having headaches these are all things that I would help the family would tell me and that would alert me to think okay maybe there’s something with the vision and I want to check if it wasn’t the normal times that I would typically check that so those are all things tied in and again with the development those are things that we usually can try to dry out anything you find at home those are all things that could that you just have to bring to your health care provider right in in those are all really important and whether it ends up being something or not as a parent that’s really important to kind of bring up like you said no question is not to be asked yeah I know that’s usually how I start my visits is do you have any questions or concerns I usually ask the child depending on if they’re after five do you have any questions and that’s the funniest thing when the attorney about their belly then heard a year ago and they slow down %HESITATION endanger hearing will then come in with their questions so that’s really important is to write down these things or anything that you notice that your child you don’t have to wait for your appointment or your physical time you should be able to contact your pediatrician if you have something come up in between say our pediatrician can answer that input your nineties as well you mentioned ENT ear nose and throat it brings me to the thinking of a sleep because I think of a lean sleeps pretty pretty well but I think across the board and in humans we’re we’re more conscious about sleep and and some things that can disrupt sleep do you find that as well yes %HESITATION sleep apnea is something that can be pretty common in our children with down syndrome so that’s a question that usually starting at the age of two to three I always ask during sleep have you noticed that your child’s Norse have you noticed that they had destruction and there’s in there and %HESITATION breeding pattern where they stop reading and then they’ll kind of catch up with that brand that’s what we collect happening campus soon and that will tell me that maybe the weight back here is moving between their nose and mouth it’s not enough to oxygenate their brain the reason why this happens more common in children with down syndrome is basically the way the nose is structured to their face but also the tongue we collect relative macro glossier which means the tongue is disproportionately larger than them outside you can imagine if a child is sleeping and you have hypotonia which is sort of the tone is relaxed can get in the way and have some trouble with with breathing during sleep self really important is that we ask about sleep a lot between the ages of three to five years specifically snoring challenges choking episodes not being able to sleep a full night where there’s daytime sleepiness and kids are just falling asleep during the day and wanting to take a nap and what we usually do is we order something called a sleep study which it which is my child goes to sleep we check how that oxygen level is to the brain to see if there’s anything you need to do and that can help sleep is that something through parents would take their children to or is that such a device maybe they bring home it can be both depending on what the services that you can but it can be a device that can be done at home or you can go to a sleep center what are some remedies for sleep apnea so depending on the type of sleep apnea and there’s two different kinds %HESITATION there’s obstructive in their central central is basically there’s a reason in the brain there’s a center in your brain stem that controls the way you greet if that’s a central reason there’s not a lot you can do with that but if it’s an obstructive it’s the size of the tongue if there’s a large tonsils %HESITATION if there’s adenoids and then knows better large that’s kind of that obstructive basing blockage of being able to breed or another big reason is obesity those are all things that we can fix right you know looking at you know wait intervention lifestyle we design if we have to do surgical intervention with removing the tonsils and adenoids there’s tongue reduction surgery that we actually do if we find the tongue is is large and one of my patients she’s now nineteen has down syndrome I’m she is overweight and it’s been a struggle for her to lose weight and she’s had now three concrete action surgeries because it got to the point with her sleep apnea that she can only sleep sitting up every time she would lay down she would obstructed not being able to see if she had her tonsils removed her adenoids removed and now after the third time of her tongue she knows sleeping through the night and sleeping on her back and doing well so again it’s it it depends on how severe that obstruction answer this particular patients obesity is that something that was a thyroid issue or as you say it’s a lifestyle %HESITATION hearses lifestyle Hey look my patients so much she’s nonverbal she comes in every month and she just refuses to be able to engage and healthy choices and it’s hard to %HESITATION she’s the cutest thing but she refuses to stop eating macaroni cheese drinking soda constantly and her mom and we’ve gotten to the point where I’ve told mom you know you you’re buying this stuff stop buying it great just have water and fresh fruits but she will just not even eat then so it’s it’s been a challenge and I find that we live still we design is really hard in our older ewes with intellectual disability rate because she wants what she wants and I think some of it is in in this mom has told me it’s guilt she feels guilty because our town has down syndrome she wants to make her happy and give her whatever she wants and we’ve had a lot of tough conversations but this is not healthy and I don’t want to diagnose her with high blood pressure and diabetes and all the things that this can lead to but I think it’s challenging we’ve now gotten to the point where mom and my patient %HESITATION walking three blocks a day which I think is an incredible win %HESITATION I have a coming in monthly for weight Jackson even if she’s stable and doesn’t gain weight future excitement I hunger I we get so excited for that because it’s a tremendous win I don’t ask for it you weight loss but if we can even stabilize and then with time slow baby steps we can get there but it’s really hard you know there’s a lot of factors that impact sort of lifestyle we design and thinking about that and I acknowledge it’s tough to lose weight for anybody let alone imagine the overall sort of guilt Dan expectation and then lack of understanding and resource and there’s just so complex motor when you talk about it that child is nineteen years old so when she was born nineteen years ago with the attitude towards down syndrome was probably different what changes have you seen in that time of the attitude towards down syndrome in my world a single line of acceptance and advocacy recently what I see in my older age group and and this is the part that breaks my heart I’ve seen a lot of family supports that have gone down this one I remember having the family coming tacked to my visits in at about ten the father is no longer in the picture and she’s a single mom taking care of this child and I unfortunately see that a lot in all of my children with special healthcare needs and not not all meaning all diagnoses caring for a child with special needs can be hard on the family support system and I’ve seen breakdowns in in now families over time in the impact that that has declined the child is it’s tough you know it’s tough to then come in as a health care provider in think about all the medical stuff that I know and respect and how do you balance that with the very real social mental health environment that a family is facing and how do we sort of collaborate and negotiate if you well and and taking the steps towards a good outcome and night and they say that if I think right now about my seventeen year old I sent two weeks ago that a single mother this was a single mother I see my younger set are all intact right now I don’t know what the future will look like I’m hoping there’s more information out there and hoping there’s more support I think it’s complex I think you I think you nailed it on the head when you said it’s the guilt because you know we can go from our experience what we experience in the in Liam’s diagnosis ten years ago and what the picture was painted we had in NYC you doctor whose only recommendation upon release was that to watch out that Liam would be fat and lazy so I feel like when that’s gets carried in those limits are present and then you do have the dynamics of a house so do do you have the challenges of being a single mom that and that guilt at it compacts it it has such a a great impact on that child’s success as it would on any child success we we’ve discussed that before where they could even extend to outside of family and friends I mean I think of Liam I’ve said this before the podcast Liam’s gone to many birthday parties where he’s definitely the first kids served piece of cake after sometime sometimes attempted to be given cake prior to the the birthday child and it’s a big piece you know it’s a nice big piece of cake and that’s a way for people to because the carefully him they they feel for something maybe that maybe they don’t know a lot about and it’s something that does happen in society and I could totally see how that happens in the media family but also extend to family and friends yeah absolutely I see that theme with my patients with down syndrome I might with my survivors of cancer I have seen a sort of a roadmap where my children who are very at once very ill %HESITATION I was literally seen on a weekly basis because I was trying to make them gain weight whether it was you know post cancer treatment or whatever it is ten now and managing obesity and the crux of it a lot of it like you said it’s it’s sort of that survivor called survivor guilt with that population because it’s sort of like oh gosh we went through so much now we have this child who’s in remission or doing better let’s feed feed feed feed rate and its immediate family and extended family exactly where it’s cool I had to talk to a teacher and say you cannot give this child for pieces of cake you when she asked for it no matter what because we have to think about other consequences that can happen with this but I can’t and it’s not just our children who are sick it’s all of us you know if you don’t feel good %HESITATION your stake you mean food is the best cure explains rate just there with a gallon of ice cream in absolutely so it’s kind of how do you eat payment have these discussions I think early on in the mind but I think never judge just trying to support are there any other changes you see in the attitude of more advocacy coming up but is there anything that you’d like to see changed I would love to see with tight with the advocacy and I think this goes kind of back to our beginning conversation in kindness and exposure in building in collaboration in from use bringing an end because of the experience we had you know say to learning from Leon I feel like every child in the world should learn from a child with down syndrome with any medical condition or anything anyone that deems quote unquote different great we’re all different and having that awareness because I think that that I would hope and pray that is my child grows and if he became a leader and decision maker he would remember and he weighed in part that change I think that’s incredibly important I think we make us not making decisions based on large scale what we think down syndrome is by individualizing care and treatment plans and educational needs specifically to that child understanding that the diagnosis of chopped down syndrome it isn’t like you’re reading a book it’s not every single child with down syndrome has the same capacity capability just like other children all children right and how do we individualize that care and truly listen to our patients and families involving other children in other anyone else today advocate in telling stories I think that’s so important I’m not a fan of cookie cutter type of planning it’s only has to be individualized nineteen give people more people can do that I think we just be in a better place what’s funny we’re eleven years from the diagnosis day and I think I kinda held on and I didn’t think about until maybe today %HESITATION underlining feeling of a specially when going to a school system the burden part and I hadn’t thought about until the very very beginning of our conversation today that I may have held that where I’m I’m thinking these people across the table think of my son even if it’s on consciously as a burden and not seen him as the asset that he is an asset that Sagal season has and you see him as and we obviously see him as a as a great gift to the world he’s taught our family so much and and as much as we teach them and that’s how the dynamic of humans are to each other and I think now I can release that feeling if I’m conscious of what that but I have I was having sometimes our child is not a burden not a burden he’s an asset and I like it like every child human let me ask you the health concerns that we spoke about are any of those prevalent only to individuals with down syndrome not those are all conditions that I look for in all of our children you know who are growing thriving I have many different children and may have hearing deficiencies that have vision deficiency my own daughter had crossed eyes if you will and had surgery when she was two and a half years old thyroid is something that I diagnosed in many different children leukemia you know only children down senior don’t get leukemia great so now these are not medical conditions that we only seeing children with down syndrome now some of them may have a higher propensity but it’s it’s something that we screen by screen for different almost my kids because they see these conditions unfortunately in many different types of children that’s what I want our listeners to hear is that when our children are born we receive a laundry list of these possible diagnoses and that laundry lists when you’re still pregnant can be used really to instill a lot of fear a lot of fear into mothers which can have such an impact on the remainder of the pregnancy on how they feel when their child is born and just set each such an unkind foundation for that life an unfair expectation of limitations and I just want parents to hear that it’s it’s not something that is only found in down syndrome diss these %HESITATION diagnosis that it that anybody could have any child can have any of that list of conditions that you need that are associated with children with down syndrome and the most important thing is you never know know what your child is going to half like I said in my experience I have many young patients attention of don’t have any cardiac defects never had a G. I. T. fact had some hearing loss wears glasses is in middle school high school sure we had to do a lot of speech therapy we maybe had to do some here too some had some hearing aids thank it’s a spectrum now I have some that did have more severe disease but in children with down syndrome again doesn’t mean that they’re going to have all of these different conditions and I would argue that any baby born you were hoping that you know you don’t have to diagnose anything and unfortunately I have patients that don’t have down syndrome that had many different complications even more severe than the list that’s associated with down syndrome and I care for in that’s what our job is to do is to honestly let that child give them the best outcome in life and we will collaborate together and we will try to see what we can you what I would like to have known then was these are things that there’s a propensity to but they’re they’re not isolated is there anything that if you knew then as a doctor whether it be at the very beginning or or any times that you wish you knew is there something that you’ve learned along the way about people with down syndrome are your patience so all the stuff that I learned in medical school is exactly that list of diagnoses that can go along with with children with down syndrome I think what I’ve learned in my seventeen years of practice I have changed the way I talk to families about down syndrome and that’s tied with sort of that medical knowledge and that list but then also the experience that I have with patients and families and now when I talk to mothers who have their prenatal visit with me and they said okay I’m going to have a baby with down syndrome I sit down and talk about the health supervision guidelines that we’re gonna do I talk about all the things that we’re gonna think about all these different on screen but we’re gonna be there together in the most important thing is that we’re there together and we need to create a leading support system for this child early on we’re gonna look for those things but it does not mean that your child is going to have all of those things on that list all of those diagnoses and even if they do many of those are common things that we diagnose and other children as well and we will get through this together and that’s something that I am now talk about much mores and bringing in my experience my real experience and I also have families to talk to each other and say would you like to talk to my stomach my family’s who has a teenager with down syndrome someone in middle school someone who school age so you can see here about what that experience has been and see how that child is doing %HESITATION I didn’t do that as much in the beginning because I just didn’t know and maybe some of that physicians that people see my kind of go on those list of diagnoses but the beautiful thing about I’ve had is I’ve been able to care for so many families that I often say I will never be able to predict what your child’s life is going to be like because I’ve seen it all right I know the most important thing is the love and support that you’re going to give your child that’s going to have the longevity outcomes that’s what it is it’s about the family support collaborating with your health care team and we’re going to roll up our sleeves and do this together they’re not going to have all of those dining space they may have some they may not have others but no one can predict that for you and even if we have to diagnose it it’s going to be okay it’s going to be okay well thank you Mona for joining us today thank you so much for inviting me this is really important and %HESITATION I certainly hope that %HESITATION we can advocate our communities together and and work with our patients and families that have down syndrome again from my perspective children with down syndrome all children I mean these are diagnoses and things that I see every single day in my family so the more that we can educate each other and work together the better that we.
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