Oishei Childrens Hospital Update September 13th

Wednesday, September 13th


Transcript - Not for consumer use. Robot overlords only. Will not be accurate.

Time to do shy Children's Hospital update doctor Daniel gets clinical assistant professor of pediatrics and the director of of the cystic fibrosis center women and Children's Hospital. Maligning the money how are you can't help you do and it. Good I'm so glad you're here I have a friend's. Daughter who has cystic fibrosis. Living very healthy let the boy does that have to be managed. Can you tell me a little bit about what you do. Definitely so. I am doctor in charge of taking care about kids with me and in our area in Western New York. So I help coordinate a multi disciplinary team so we have respiratory therapists nurses. Social workers everyone working together to help take care of patients with cystic fibrosis an area I feel we all have heard of cystic fibrosis. What exactly is it. So it's actually a disease that you have from earth so it's genetic and basically it causes. A defects in gene. That causes people to have really thick mucus in their long smooth and throughout their bodies so they have a lot of lung problems and difficulty breathing. And when do children typically get diagnosed with us. Usually now that we have newborn screening. We can diagnose it shortly after birth move and that way people can start treatment right away. This is a big question how close are we to a care. A close. We should be close I think we are I really do we're working together we have a research network like across the country and we're part of it and buffalo moved and were doing lots of studies and we're really coming close eye care. We're hoping within you know my lifetime very soon hopes so yes do you think there's a cure that's found that our kids with CF frightened now will be able to benefit from that. Yes definitely there's already some medicines that. People can have on that they take that can change. The actual defect in the protein that causes CF. Booth what is the treatment now and is this took that little shaky vests are part of the treatment and then what's the next big thing that you're aware of. Right so right now people do have to do the best where it kind of helps them clear the mucus out of their lungs and they have to do that every day. For about an hour a day so it's a lot of time and then they have to take a lot of pills to help them digest our food and to stay healthy but they're hired new medicines actually. That help the actual protein defects so it helps. The little on poor work better and that lungs and that clears the mucus a lot better tell me the cystic fibrosis center women and Children's Hospital. Shirts so where center we serve all of western new York and basically we have about a 180 patients that we take care. And we have as I said we have like doctors nurses respiratory therapists social worker nutritionists. We all worked together. To take care of patients and they come at a clinic on every three months or so. And if they would have to be admitted to the hospital make Oden on either Children's Hospital or at buffalo general that's. So I want to. You on the back applaud you and hug you all the same time because they did see you then add your clinic was named one of the top in the nation. While I know we're still happy congratulations. And what are we doing right here in Western New York. I think we heard just from a senator who pays attention you know we try to work alongside the patients. So you know they know what makes them feel batter and what they can do to help their own health mostly try to listen to them and work with them. And we just you know see patients frequently we're involved in a lot of research so we can bring back in all the information from from across the country to our patients here. And how I couldn't help benefit them and make sure they're getting all the right treatments so you're already at the new outpatient center tell the bit where are you act. So we're im not come Ventas buildings and it's a brand new building. It's just a really nice spacious comfortable atmosphere for patients to com. An and I said they come every three months they do breathing tests and we see them you know as their providers and you know and just work with them on what they can do. How does someone learn more about them cystic fibrosis or 65 roses little kids for college at which. Cute little thing but if someone wants to help and and maybe maybe they have money they can make a significant donation in north little donation that someone learn more game. I don't think you. So I eat we are called a cystic fibrosis on our Western New York so you can actually call us at 3230110. Or there's website called CF fast dot org and you can actually donate to the Western New York chapter. Through that foundation for the through CF foundation. Off the top of your head. And this is an in the classroom. But in terms of research cousins and wouldn't it excites me so much. Some day I wanna do a show on. All of the research dramatically that's happening here. In western new York and that's where if somebody wants to donate to 65 roses or cystic fibrosis. Off topic had one of the exciting things that's being done in research. Right so were actually working on compounds. That can actually changed. The protein so CF this 'cause may have defective protein called CFTR. And that would effects that let me and severe this guy Steve he means mucus yes I'm actually is so there's less. I'm water in the mucus so it's not a slippery and I can't move I lungs. So basically these compounds are drugs that you can take by mouth may help com. You know cracked the defects of the mucus. Actually changes the word involved you know at our research center in buffalo we are involved in studies like from kids that are six years and up. Brown and adults to home these compounds so hopefully they're proved him and then make it and then patients can take them. I know the most beautiful girl that needs you to find nectar as fast as you can and so if if you have dollars that can go towards research. Think about that your money and it he had to be any amount of money and I know there's a lot of giving going on right now. Com but the incredible things that you could be curing a disease like cystic fibrosis how did we score a doctor like UN and Western New York. I have it's of course and sell this as my hometown type feel really devoted to the people western new York and the kids here. And we'll do anything I'm a pediatric home and I'll just like antsy kids with I mean. You know lung disease are and offer wheezing her. I think in looking at Wii's right now I'm glad that isn't it. Hey good but that we'd be happy to help you know. We really wanna help all the kids with lung problems in Western New York when I am here. Your child may be you here's some difficulty breathing or something. How do you let it go before you go see a specialist like yourself is there a week two weeks a few days what's. Well I would advise you know talking your. Pediatrician and primary care or writer and start there because they can really help you may know your child while in. And if it's something to be worried about they come like in Allen and we'd be happy to see see them at any time if if the parent is concerned too. They just calling at 3230110. At our new phone number I'm telling everyone because we just moved our clinic. Al got you and so finally nick asks questions. On just him like I should be answering them well you seem. Great about it. Yeah Miami yeah all the time I'm not a doctor I can feel like if you spokes model we is is available yeah. When when does it get banned for the kids like I know them with with allergies in the temperature changes and as what this time of year is that. What. Probably headed into it because we're back to school. No just a lot of exposure to viruses and germs in and it's the same with our CF patients you know we tried. You know make sure they can stay healthy good hand washing yeah Tom just I don't stay away from people are sick of possible he can't even a bubble but nine can't. Actor Daniel gets in studio with us from the Children's Hospital we asked each guest this final question what excites you most about the brand new Children's Hospital muscle. So I just really excited again about I've although. People will be able to come together all the providers it's kind of a meeting of the minds everybody can get together do the best research and just provide the best care for dollar patients in Western New York it's an honor meeting you and keep. Keeping your kids as healthy as you can I know it's not a tough job you really to stay on your special person thanks for coming today thank you so much appreciate it.