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anyone have experience with this clinic?
- Thread starter anonymous
- Start date
My daughter goes to CHKD in Norfolk. She sees Dr. Gowen. We love it there. The people are really friendly and understanding. What questions do you have & maybe I can answer them. We found out that Reilly has CF in April, so we are not experts, but I am willing to help any way I can.
Cindy! I'm so happy to find someone. CHKD will be the closest to us(if all goes as planned) when we move but I can't find out a whole lot about it on line. I saw Dr. Gowen's name but that was all the info I could find. Can you tell me if Reilly sees a whole team of experts along with Dr. Gowen- a G.I. doctor, a respiratory therapist, a nutritionist, a CF nurse...when she goes to clinic? If she has stayed in the hospital for any length, does the hospital staff seem very familiar with CF? I don't want to overwhelm you with questions but I am very excited that someone replied. How is Reilly doing and what led to her diagnosis? I have two -w- CF, a ten year old and a five year old, both girls, my middle daughter does not have CF. I am concerned about going to a new CF center especially one that I can't find out much about so far.
Thanks, Katie
Thanks, Katie
Katie,
I will be happy to answer your questions. To begin, here is a link to the CHKD website. It is a little difficult to navigative, but after you find what you are looking for, is a good site. <a target=new class=ftalternatingbarlinklarge href="http://www.chkd.com/Respire/cystihub.asp">http://www.chkd.com/Respire/cystihub.asp</a> Reilly does see a team. In a typical visit, she sees Dr. Gowen, a Nutritionist (Melody Persinger), a Social Worker (Connie Sigley) and a CF nurse. So far, we have not seen a GI Dr. or Respitory Therapist. I am not sure it that is because she doesn't seem to have a lot of lung issues (yet), or what. They are all <u>wonderful</u> to deal with. They seem very knowledgeable and are always kind and willing to answer any and all quesitons. The nurses are great, as well. My favorite so far has been Paula.
As I said in my earlier post, we did not find out about Reilly's CF until she was 19 months old. She has had reflux since day 1, and at about 1 month old was started on Zantac. Before they started her on the Zantac, they did an ultrasound to rule out Pyloric Stenosis. (That was fine) Around 8-9 months old, her weight started to go downhill, and she didn't really gain a whole lot. To add to that problem, she had a texture aversion of some sort, and was EXTREMELY picky over what foods she would/would not eat. She had always had what seemed to be stomach aches, was very gassy, and had 4-10 stools a day. We thought she was colichy, but didn't really have any proof. As she got older, her stools became more and more fatty. Finally, we decided to do the sweat test. But, they couldn't get her in for the test for 3-4 months. So, instead of waiting, we did the DNA test. She has 2 copies of Delta F508. After getting the diagnosis, CHKD saw us 2 days later. (We found out on Monday, and were at CHKD on Weds.) They were very reassuring and had such a positive outlook, we were very relieved. She did culture pseudomonas the first visit, but hasn't cultured it since.
Where are you moving from? Is your family military? It seems like many who relocate to the area are military. If you have any more questions, please do not hesitate to ask, or email me at reillybug@earthlink.net. I am in the process of changing my email, so if it gets returned, or you don't hear back from me post a message on here.
Thanks!
<img src="i/expressions/angel.gif" border="0">
I will be happy to answer your questions. To begin, here is a link to the CHKD website. It is a little difficult to navigative, but after you find what you are looking for, is a good site. <a target=new class=ftalternatingbarlinklarge href="http://www.chkd.com/Respire/cystihub.asp">http://www.chkd.com/Respire/cystihub.asp</a> Reilly does see a team. In a typical visit, she sees Dr. Gowen, a Nutritionist (Melody Persinger), a Social Worker (Connie Sigley) and a CF nurse. So far, we have not seen a GI Dr. or Respitory Therapist. I am not sure it that is because she doesn't seem to have a lot of lung issues (yet), or what. They are all <u>wonderful</u> to deal with. They seem very knowledgeable and are always kind and willing to answer any and all quesitons. The nurses are great, as well. My favorite so far has been Paula.
As I said in my earlier post, we did not find out about Reilly's CF until she was 19 months old. She has had reflux since day 1, and at about 1 month old was started on Zantac. Before they started her on the Zantac, they did an ultrasound to rule out Pyloric Stenosis. (That was fine) Around 8-9 months old, her weight started to go downhill, and she didn't really gain a whole lot. To add to that problem, she had a texture aversion of some sort, and was EXTREMELY picky over what foods she would/would not eat. She had always had what seemed to be stomach aches, was very gassy, and had 4-10 stools a day. We thought she was colichy, but didn't really have any proof. As she got older, her stools became more and more fatty. Finally, we decided to do the sweat test. But, they couldn't get her in for the test for 3-4 months. So, instead of waiting, we did the DNA test. She has 2 copies of Delta F508. After getting the diagnosis, CHKD saw us 2 days later. (We found out on Monday, and were at CHKD on Weds.) They were very reassuring and had such a positive outlook, we were very relieved. She did culture pseudomonas the first visit, but hasn't cultured it since.
Where are you moving from? Is your family military? It seems like many who relocate to the area are military. If you have any more questions, please do not hesitate to ask, or email me at reillybug@earthlink.net. I am in the process of changing my email, so if it gets returned, or you don't hear back from me post a message on here.
Thanks!
<img src="i/expressions/angel.gif" border="0">
Cindy, I tried to email you again but it didn't go through so I just thought I would post another thank you. Your email was very reassuring. It makes me feel better to know how confident you are in your situation. Thank you for the contact info. I'm sure I'll be using it. I appreciate all your help.
Katie
Katie