My grandson born 11/08/08 has Erbs Palsy

[ryansgranny]

Rhonda, I am new to the message board. We are waiting on surgery for my grandbaby Ryan ( 7 months old), however, BCBS is fighting us. We may have to go to Shriners but what are the steps to getting Dr. kozin. How is Anthony?? and what kind of surgery?? Ryan needs a mod quad and a triangle tilt. We are trying to get to Dr. Nath in Texas. BUT to no avail
Carolyn
Ryan's granny

[AngieD]

Ryan's granny- you can contact Dr. Kozin by e-mail (he usually responds in a timely manner) or call his nurse Linda. Linda can help you with the paper work and set you up a appointment. Shriner's is free so you don't have to worry about the insurance mess. My daughter is 13 and we live in Texas so she sees Dr. Nath but we also have gone to Dr. Kozin for his opinion twice now.

Best of luck and here is Dr. Kozin's contact information.

Nurse Coordinator, Linda Filipone: 215-430-4074
phone: 215.430.4034
fax: 215.430.4079
email: skozin@shrinenet.org

[ryansgranny]

Thank you AngieD for responding so quickly. My daughter and I have been so stressed on what to do. I did call Shriners today and spoke with a gal named Moreen. She was very nice. We do have letters sent to me by e-mail from Dr. Nath but I probably have to get permission to send them on because of hipa laws. He gave his evaluation and what he planned to do. Was you pleased with the Dr. in Penn? And how old was your daughter at her lst surgery? My name is Carolyn and I am Ryans Granny Thanks so much

[ryansgranny]

Dear Rhonda,
Found you on the message board. My grandson Ryan is facing the same kind of surgery. How did it go with Dr. Kozin? It looks like we will have to go to Shriners because BCBS is denying paying for us. Ryan is seven months old and we had planned to go to Dr. Nath in Texas. Let us here from you about your success. thanks we definitely have to leave it in the Lords hands. My name is Carolyn and I am Ryans Granny.

[AngieD]

Carolyn- I am glad you were able to talk with someone at Shriner's. Kayla was 8 months old for her first surgery, she is now 13, she actually has had several other surgeries as well. We have not had any surgeries with Dr. Kozin but every time we have seen him, he has been great and has a great bedside manner. I made a mistake when Kayla was little and didn't go and get other opinions, so now we do. Kayla's first surgery was not a success but that has to do with the doctor who is not a BPI doctor. I thought and was told this person was but now we know different. Granted the interent was not what it is today 13 years ago but I still wish I would of known to get several opinions. Kayla has had several surgeries with Dr. Nath and we love him as well. You will find some people like one doctor and hate another but I believe you need to meet with each doctor and find the doctor that you are comfortable with. If Dr. Nath e-mailed you what he thought your grandson needed then you can print that. As long as it's your medical information you are entitled to a copy of everything and I would suggest you get a copy of everything. I have copies of all of Kayla's surgery report's,some doctor's notes, x-ray's, MRI's, CT's etc.. You never know when you will need it and so much easier if you all ready have it. When ever we go to the specialist I just bring my file folder that has them all in there.

Angie

[ryansgranny]

Thanks Angie for answering me. My daughter's name is Lisa. She has Wesley who is 7 and Ryan will be 8 months the 19th. Her e-mail is not working so I thought I needed to get all the info I could get. We are suppose to call Moreen again tomorrow at Shriners. I will use your advise about the reports sent to me. Hopefully, we can get some direction soon on what to do. Blessings to you and your family. Carolyn,Ryansgranny

[Kimberly1108]

How is your little guy? and new movement? my son, Ryan, did not begin anything until he was three months and one week. He is 17 months now and progressing..... it is a compllicated physical and emotional road, but talk to as many people as you can. We have been patients of Dr. Kozin since his birth and i can not say enough kind words about him. He answers every question and makes certain that i understand everything i need to know. He remembers my son, and the speaks to the details during each of his exams... i feel completely safe that Ryan is under his care and would encourage you to make the trip to see him. i too have wanted answers, and i still find myself searching for them, but the logical side of me says that only Dr. Kozin can make a "prediction" based on his experiences and knowledge of the injury and how it specifically affects my son. I often get frustrated wanting to know what he will be like when he gets older.... but like my daughter, who does not have the injury, i do not know what is in their future.... i just seem to have more focused questions for my son due to this. I wish you and your family all the best with the mountain you have begun to climb~ stick together and support eachother, and remember we are always here to help when we can! lots of love!

[beansmom]

Sorry I didn't read everyone's responses but my daughter do not have movement until 4 months ~ so there is still hope!

We currently see Dr Kozin as well, and see recently underwent surgery to help improve her range of motion.

I highly recommend Dr Kozin to any family dealing with this condition.