Turner Syndrome Child With Joyce Isaacs [ssrb LNisok]

00:04 Hello folks this is Jeff Davis with the legendary Jeff Davis show from Central Texas USA and I love my Kansan archives. Peace out baby! You never know what she'll do. I love Mike Hanson Archives. Of course we're doing a show today on Turner Syndrome and you're saying to yourself, what's Turner syndrome? And i didn't know what it was until i started reading about it but you know the more i talked about it like most anything Richard Bredy once you start talking about it you find out that people know about

01:03 Well, you know it was interesting. You gave me quite a bit of information to read about Turner syndrome And you don't realize that that's out there and it's very interesting and we have the opportunity today to talk to a young lady in a mom who they deal with it on ongoing situation. And a sister. Right right. A cute little girl. Boy, we have cute girls We were just talking about how much we like girls How are you? It's Brittany Cook Did I get your name right? Mm-hmm. Well, mmm... talk for us Brittany! You're all dressed up and you have on this is the cutest outfit you've got on with ribbons running through your dress It's my sisters it's your sisters well i don't blame ya i have sisters too wear their clothes all you can you know and you have these shoes that match it they match all the colors in your dress what grade are you in

01:50 Third. You're in third, okay. Tiffany come over here. Come over here girls get over here by me okay? And this is Tiffany Cook and she's six years old. She's six years old. And Brittany is seven. Get over here by me Tiffany I'm not gonna hurt you all I have a daughter The rain in here. Yeah, and when we talk about Turner syndrome one of the things you're going to notice is that Tiffany is a little bit bigger than Brittany And this is mama as Richard now Thomas its cutest mommy you've seen She's got it you know if you work out workout in the yard That's

02:34 Why don't I look this good? But you have a son and then you have another little daughter. So, you have four children. You have three girls. One from previous marriage...uh-huh...and daughters And three daughters. Three pretty daughters. And Kimberly is not here today. Uh huh. Where is Kimberly? At daycare. Uh-huh and she's the baby. She too? And she has all those curls on her head. You don't like her much, do you? I love her! I bet you do! Does Kimberly get a lot of attention? Yeah, she's two years old. She's two years old. Uh-huh. Tiffany gives Kimberly the whipper and then Kimberly raises it up. Wait a minute...the whipper?! What is that one thing...? The flash water. Oh! And she whips us

03:19 Oh, the baby gets you? Yeah. She goes around and gets them like flies! Uh-huh she swats you but y'all have a good time because you've got three girls right here oh that's just great we stay busy well I bet you do Barbara you have a pretty place out here in the woods yeah secluded well that's all right that's what i like but uh we first... You happen to be my Canson sister-in-law right your Melissa's sister yes his wife's sister bunch of blondes in this family And when he first approached me about this, he said my sister-in-law wants us to do this story. As I say when I started telling people about it then oh! I know somebody with that and you know so I said to Mike what exactly is it? We got a little bit of this and a little bit of that So Richard and I both read about it and Brittany... Okay now is she small for an eight year old seven and three fourths? Yeah She's pretty small She's on the Turner Syndrome growth chart

04:16 They have a different chart Then like she would be on another chart development chart and everything for the pediatrician When is your we squashing you wait Scott? Okay, little girls. You're just a little nervous. Well that's okay baby nervous only about a million people watching you. When did you first find out she had Turner syndrome? When she was about 18 months old and when she stopped growing, she was at eight months old when she stopped growing and they're only 13 months apart And so my pediatrician realized, you know this couldn't be normal. When he asked me what was her how long was she when she was born and I said she's 21 inches and he goes no way! And i said yes I know how long she was and he says no way and we started measuring and we sent to a

03:19 Oh, the baby gets you? Yeah. She goes around and gets them like flies! Uh-huh she swats you but y'all have a good time because you've got three girls right here oh that's just great we stay busy well I bet you do Barbara you have a pretty place out here in the woods yeah secluded well that's all right that's what i like but uh we first... You happen to be my Canson sister-in-law right your Melissa's sister yes his wife's sister bunch of blondes in this family And when he first approached me about this, he said my sister-in-law wants us to do this story. As I say when I started telling people about it then oh! I know somebody with that and you know so I said to Mike what exactly is it? We got a little bit of this and a little bit of that So Richard and I both read about it and Brittany... Okay now is she small for an eight year old seven and three fourths? Yeah She's pretty small She's on the Turner Syndrome growth chart

04:16 They have a different chart Then like she would be on another chart development chart and everything for the pediatrician When is your we squashing you wait Scott? Okay, little girls. You're just a little nervous. Well that's okay baby nervous only about a million people watching you. When did you first find out she had Turner syndrome? When she was about 18 months old and when she stopped growing, she was at eight months old when she stopped growing and they're only 13 months apart And so my pediatrician realized, you know this couldn't be normal. When he asked me what was her how long was she when she was born and I said she's 21 inches and he goes no way! And i said yes I know how long she was and he says no way and we started measuring and we sent to a

05:05 A specialist and the first specialist said there was nothing wrong. You just check her diet, maybe feel guilty that oh maybe I'm not feeding her right. Was she healthy otherwise? Yes she was healthy we did have problems at birth you know when she had like a bowel movement inside right before she's born and everything but That has nothing to do with Turner Syndrome at all. Yeah, that has nothing to do and far as everything else she was you know pretty healthy and everything and they didn't detect her then which normally they probably should have. Can you detect that? I mean now are they looking for it in newborns? Yeah, yeah they can detect from the chromosome disorders and everything if they do tests i'm sure. I'm sure if they would develop you know delivery and everything

05:54 I don't think but like just they can detect it before they're born with a chromosome. So that's what it is, it's a chromosome disorder and we know why? No we don't know it just when you You know, when she... Has anyone in your family had it that you know of? No. Nobody. Just as a first and everything It's like one out of two thousand people is born with it And a lot of people don't understand what Turner Syndrome is and then a lot of them when they go through puberty Is when they find out When they don't have their menstrual cycle Yeah, when they don't have a menstrual cycle at 13 or 14 That's when they find out

06:32 And they don't, usually don't have any reproductive ability. Which is no big deal trust me. Really! I mean there's... Yeah and my doctor was Dr. Matusik was the first one that diagnosed her and she passed away i think i believe it is two or three years ago with a brain tumor but i really had a lot of faith in her and she guided us through it and we had some counseling when she was first you know diagnosed uh-huh and everything but um And then we have a Dr. Ray now, we have and come to find out that Dr. Ray went to school with Dr. Matusik and everything else so they knew each other. Well as far as the school work is she okay in that? Yeah she's fine in that She stays up with every thing else They uh...she has little problem with math So do I They said they will have some disabilities but we over conquer those But one time yeah I got just one X

07:27 on math and my mom and my dad were very proud of that. Oh, well I would be too but a lot of people have trouble with math some people have trouble with English Some people have trouble with street math It's math. I can't read a street map, okay? I am what I call... See that little humor they threw in there! Okay! Well you probably can but I'm what is called the kinetic learner. I don't know if that is right or not but it sounds good for not being... No, that's what it..I have to do something before I really master it. You know its computer or a map or anything else That's why I'm so good at math

08:06 I understand that, Brittany. As far as any learning disabilities she doesn't have anything that's major we did have to do some tests to find out if she had a horseshoe kidney and if everything was alright Is that sometimes common with the teratoma? Yeah it is common But that's alright Yes everything...we tested all of her organs and everything The doctor did tell me Dr. Matusik said you know she'll be infertile Do tell he now that she will never You know children. That's no big deal, that's right. That way she can accept it longer you can adopt That's right. You're not children are better yet Well I think probably having six or seven dogs in your yard to be just about as good sometimes okay? Yeah No, you can adopt there are lots of babies that need adopting out there And but you don't know you might want a career in something you know you might who knows she'd be number one on the doctors and you know yeah see because she's

08:59 You know, she does have, you know, tumors and she's infertile. Because a lot of them they have to wait five years or something like that. She can go right in the program because... Probably! And get yeah and get a baby. And there are lots of babies out there that need homes okay? They need a good mama which your gonna be I'll bet ya. Yeah. The..and you've had practice too on your little sisters right? Even if that one is just the little paddler whatever it is. You cut it up uh-huh mommy well I've cut it up but

09:41 You know, how... she just looks like any other pretty little girl to me. She doesn't have the full-blown turners but she is diagnosed with the turners and the disability. She does have thyroid. You can see you know the thyroid when when she does lean back you can see a little Adam's apple yeah well so it was fair or false it. Dr Ray noticed that right off when she'd seen her and we you know we couldn't figure out why she was 31 pounds for almost two years, 31-32 she gets sick wait she was eating well and it was her thyroid and as soon as and we transferred doctors and we went into Dr. Ray's office she just leaned her back, and it was this big I was like oh my god i just thought it was something serious but it's gone down now and we treat her with uh Synthroid I believe it is five milligrams so she's on a regimen for medication okay how tall do you think she might be? um

10:35 I'd have to look it up. Okay, but you think she's project if we projected is she gonna be very tall? Oh She'll be 411 they already said that she'll be for 11 with the hormone growth shot So she does get shots six shots a week My mother-in-law was like four ten or something You know there are a lot of short people walking around and especially for a girl course you're not too bad Yeah, I'm so you're not big in high school But Bubba, he is 6'3". He's a giant. Is that your brother? Well be glad he's the boy okay because you wouldn't want to girl that was six feet and kind of big would ya? Alright sorry interrupt here stay tuned right here on these channels for more classics from Mike Hanson archives

14:12 Be sure to go to Mike Hanson Archives, Hanson Archives and our new one Waco Archives. Thanks a lot and God bless! You know, it is a disability because you have to take them to the doctor a lot. She doesn't look disabled she just looks like a pretty little girl Yeah that's why we need to get the awareness out for Turner Syndrome cause if she didn't have another sister I would've never noticed this and we wouldn't of gone through are diagnosed and trying to find out what was wrong with her. Okay, and helping her grow some? Yeah so this will help her grow. Okay now this is the growth hormone you have. Yes it helps her grow to be 4'11".

14:55 Because if not, she would really be really a small child I mean She's really a lot of kids are ahead taller than she is right now And it makes it difficult because you know when they play together They've they've you know don't mean to be but they can push her down and she's a lot lighter and and it just how I know I have I have a daughter who was this lightweight skinny? Yeah, kind of get pushed around in everything. That's right. They just feel like they're really small You don't understand. Yeah, except you can always like when you do acrobatics and everything or be a cheerleader they grow ya up in the air if your little so I mean there had some good stuff. And see if she was 13 when she was diagnosed she only had like five years to get the growth hormone before her bones were defused. You know before they stopped growing In other words it's that what we're trying

15:39 people in them. We got ants? Okay, well they're just everywhere and they say... Oh, honey she's got ants in her toes! Okay, here we go. You can tell she's kidding to Mike! But what is the growth period that you need to administer this? Before her bones fuse I believe it's like 18 or when the growth of...you know start getting to be an adult. Okay so when...like because a lot of kids are grown Do what? Okay, and we're Barbara Cook. And we're sitting here talking and of course We've got Brittany here at Sitting on the Rocks. She's doesn't she look like a calendar girl? Yeah. She looks so pretty in her...she looks like she's gonna have afternoon tea you've got on that smart tea dress You look so cute with the ribbons on it and the shoes to match! In other words it's important that

16:31 Turner Syndrome be diagnosed so that you can get in on the growth pattern? For the early awareness, yes. They do have an early awareness program that they are treating young children but this But it's only for like birth to three years of age is the early awareness to you know, To go through all this system. Of course I guess that earlier the intervention The better jump you're going to get on a situation That's correct but people with Turner syndrome There's no race she's gonna have wonderful life right and she yeah She'll live to have a good life and everything but I'm just so glad she was diagnosed that way you know because if anything internally was wrong we could have it you know fixed or... But it wasn't. That way it could be diagnosed, you know, if she ever wasn't a car accident or anything she had a horseshoe kidney everybody would be in trouble you know and it just her

17:19 prevention. Yeah, yeah just good for me. It helps her with her growth I know I was not really wanting to do this so I started giving her shots when she was two and it was really hard for me and I had to be counseled you know and I I was always scared of a needle I never was the needle type but I'd never wanted to be a nurse I didn't want to do all that and now is just against all of it Why can't you let me get the shot? Do you want to give your own shot sometimes I always have to stick it in her and she could sometimes she'll push then. But good stuff's coming out of it, because it's got to make you a tall girl and not that you know your clothes will fit better so just this

18:00 She wants to catch up with her sister. She doesn't want to wear her sister's hand-me-downs, she wants her sister to wear your hand me downs! That is a big deal. Okay this is Brittany's medicine, her protoprine. She has to have six shots per week to help her grow and keep everything growing in perspective and everything we do mix it and its already been mixed everything. We have to mix the water with the protropin, it comes in a dry substance and we do have a larger needle for our mixing needle to pour into here and then once it's mixed we barely you know shake it and let it dissolve with the water and everything and we have an expiration date on here

17:19 prevention. Yeah, yeah just good for me. It helps her with her growth I know I was not really wanting to do this so I started giving her shots when she was two and it was really hard for me and I had to be counseled you know and I I was always scared of a needle I never was the needle type but I'd never wanted to be a nurse I didn't want to do all that and now is just against all of it Why can't you let me get the shot? Do you want to give your own shot sometimes I always have to stick it in her and she could sometimes she'll push then. But good stuff's coming out of it, because it's got to make you a tall girl and not that you know your clothes will fit better so just this

18:00 She wants to catch up with her sister. She doesn't want to wear her sister's hand-me-downs, she wants her sister to wear your hand me downs! That is a big deal. Okay this is Brittany's medicine, her protoprine. She has to have six shots per week to help her grow and keep everything growing in perspective and everything we do mix it and its already been mixed everything. We have to mix the water with the protropin, it comes in a dry substance and we do have a larger needle for our mixing needle to pour into here and then once it's mixed we barely you know shake it and let it dissolve with the water and everything and we have an expiration date on here

18:50 We just have to watch the expiration date and we give her shots six days a week. We figure Monday through Saturday is a good time, and Sundays she gets off... Okay! ...and everything. And uh, she's not too happy. She wants to wait until tonight. We usually give her shots at night but we want to go ahead and give her a shot that way everybody will understand how she gets her shots and how a big girl she is. Well, you know Brittany let me tell you something with people are you listening? You're just like every other little girl I've ever been around the if your getting shot on TV and maybe some other children have to have shots well for this or for allergies up in my life

19:30 I've had to give myself lots of allergy shots. I had a big German Shepherd once that had epilepsy and I had to give him shots, and then when I was a teenager my mother was just terribly sick And I used to, you know give her shots and I had to practice on an orange. Okay? That's the only way I could figure out how to learn to do it! You know uh-huh so...you know I know that it is one of those things where you just think oh I hate this but guess its like everything else when you start thinking about all the good stuff thats going to happen. It just takes a minute or two. Its not long when you have a shot

20:09 It's not long. That's right, and just think how good for one little time a day for six days a week and you get off on Sunday she is like every little girl I have ever been around sometimes we give them to her at night early in the morning and she won't even realize it the best ones isn't it? Well we just started doing that because she's been getting to where you know she's been doing it since she was two and she's fixing a B8 in August so she's being doing this for six years almost. But just think, that little bit of an eight, that's not much compared to all the good its gonna do! So you know I just every time you have that... It's like

20:51 It's like when you get my age and you start to gain weight I was always skinny when I was younger, like your mother. You know? And when I start...you know, when I start to exercise, I think oh! I can't do this but then I started thinking about how I look in the mirror and I think I can do this okay so it starts....You have to kind of trade off a little bit and get one thing for the other well where do you get your shot The arm? Show them where you get your arms. Or the legs. Or the belly, you know there's like this area, this area, the legs and thighs and then you can also give it to the belly but we don't ever get in the belly We have enough shot room here because after awhile the elasticity in the skin right there gets tough You know And now what do you call this when you give a shot Barbara

21:44 It kind of puffs up, it goes mmm like that because it gets in there and thinks. It's right underneath the skin. It has to get into the muscle Is that subcutaneous? You see what a big doctor I am. Yeah well I'm not too much of nurse either. I never wanted to be a nurse. I didn't either okay but you didn't know. Well that is true but watching you though when your showing the medication and showing the needle and everything and knowing how different And knowing how difficult it is. I'll start doing it. It's the hands of a loving mother because we know that this is what you have to do and sometimes, it's hard to be the mama isn't? Yeah, there are some times but... You know there are people out there who are less fortunate than us that has turners and then other people also come with diabetes

22:36 And it's just, you know some little problems that can occur. Can generate later on and we have to keep watching her for diabetes too and everything so you know... You know we all have to Barbara everybody has to watch her and let me tell you something honey when you get past 55-60 you start watching for everything! Yeah. You start hoping somebody sneaking up on ya' But I mean it's just one of those things that you have to do. What are you doing? We get all the air bubbles out, we have to get all the air bubbles out. Now remember what we talked about is just a minute right and you're gonna be you know a pretty tall girl and you're gonna be doing stuff like dancing. It's getting old thats what it is its getting old and she doesn't like it well but we gotta take care of you. Still do it for the next

23:30 You want to sing while you get it? No. Singing helps a lot! See, turn over here and look over here see we just kind of wipe the area and we blow on it so let it dry So we just stick it in there And then we pull it back to see if we got it, you know the blood or anything and then we just start Injecting it. You're nearly through with this! It just goes so fast and it does have a little bubble sometimes but you know Where do we go now? See it doesn't hurt. It's just you know little shot I know there's a lot of kids that

24:08 Hates to go to the doctor once a year to get a shot, you know, but she punch around on it when you get It's better than taking blood. You know, that's right That's right. Does it hurt? Does it sting or does it... It hurts, but look what a brave little girl she is! She's my special daughter out of all them. She's my special little girl because she has to... I had you in the hospital for 14 days when he was born. You were in the hospital and your special They still did not diagnose her as a Turner's at that age, you know until we had the other child and then we realized something is going on. The other one is bypassing her and she doesn't stay on the growth charts That was the main thing You know taking your child to the pediatrician And checking the growth charts Right there will tell you everything

24:59 It's Joyce Isaacs at large continuing and we're having a fascinating conversation. And the reason we're having this conversation is that there may be somebody out there that has a child with Turner syndrome, there maybe people who have been diagnosed with it and maybe people who have it children that have it and they don't know it right Barbara? Right. Do you have a big chapter here in Austin do you have like a support group down in San Marcos there's one uh and there's another one up in North Texas, and they've got them all over you know and then I believe there's one let's see we just joined that we used to go up to Fort Worth and have ours and everything was in that chapter up there at the north chapter

25:46 And we just now found out about this one down here in San Marcos, so we went to that one last time. How many people are in the wet sand markers roughly? The last time I was down there it was about infertility We only seen about four people and there were some people that were 40 years old with turners And there was another child was eight years old and we got to meet they live in Round Rock or Georgetown in that area. Mm-hmm, and not too many people it seems that we've met that you know the habit are and everything that are aware that they have it right a lot of them They're walking around right now that do have turners and don't know it well

26:26 You know, to go through the puberty stage. There we go! Yeah and that but that's when it hits because that's when you see the absence of the menses in... Okay now is this mostly girls? Yes it's only in girls. It's only in uh girls and everything because of the there you know the eggs and all that. But okay so in other words a male child will not have this? No, no. Is there anything comparable to it that male children have that you know of? Not that I know of and everything...I don't know but I'd have to ask my doctor Dr Ray and everything else. And this is a fairly new field isn't it? Actually its been back..I looked on their website and everything I was looking on the internet and everything and its back that was actually

27:09 Been going through the chromosome disorder function and everything that was back in 1942 and everything on Turner's But they started to come right, but they just now passed the medicine like 19. What was it? 19 this two years ago On the FDA you know it got okayed with FDA right yeah is she She'd been taking it way before then, when it was approved and everything. And I wasn't too scared to do it you know because I figured that would be alright. My husband would say they guinea pigged her for those many years but it helped other children and helped pass it because it showed she was growing and did help on the growth charts

27:51 and it did some good, you know? And everything. Because I... You know there's a lot of people that are real small who do this and they didn't get the growth you know she is a full grown woman. She is 40 years old. I do not what your friends are saying They're going to say we saw on that show with that woman and she never let you talk! I think they're gonna say how'd you enjoy getting so sweaty And we're going to lay it off on the weather. I'm going to say that the Lord did my hair because my dew is falling. Your dew is falling? But once again... Try Viagra, that might help you. You think it'll get my dew up? My hair's falling! We're sweaty and we've been out in the stables and now Barbara was kind enough to let us come in and visit with her little girls and talk about Turner Syndrome

28:38 It's yeah, but once again what you did though Joyce at large has brought a completely unique program to the public That's of interest and that's fun. Well it's interest and it's fun and although this is a condition And I have to deal with it its She looks great to me and she's like you say it validated her life. It validates your life? And I think when we look around our families, we all have different people in our families that have oh uh where are you doing like that okay yeah yeah We have if you look around you have people in your family that may be handicapped in one way or another

29:14 You know, it's just the human rights. That's all there is to it and that's why we need to all love and care about each other. And one of the most important things is that with children early intervention You have to look at your kids, you have to pay attention. Did you get directions with Richard or Angela when they were born? No! I mean they went through the standard things to see if anything was wrong according to what they knew but... ...to my knowledge they didn't check for this. But you know just do the best that you can and that's why it's That's why I think it is so important that we be mature when we have children. That is about the only thing that I agree with Dr. Laura, okay? You need to grow up because when you are going to have a family... A child is at your mercy and you need to know how to take care of them. There is help out there and finding it is the big thing! And that is what we are here to do right Rich? Get the message out!