1st timers....big decisions

[admin]

This is my first time writing...I found this website, this hope of what is happening in Texas, only one month ago. My daughter, Molly, has ROBPI..10 pounder...you all know the story....she can get her hand up to her ear...she's getting tighter and tighter as she grows. She's awesome, has never let this stop her from anything...she plays sports, water skis, etc...all with her left arm. We've always been told by her PT's and Doctors here in California how "great she's doing and well she's compensating". In October, by a miracle chance meeting set up by her PT, Molly got to meet Dr. Karen Pape from Canada. She took one look at Molly and said, "Go to Texas right now...they can help her". We checked with the head of orthopaedics at UCSF and at Children's...they said, "No..as much as they wanted to say there was hope for even some gain...it is not possible". So of course, we went to Houston...we got back last week. In fact, I just read a posting from "Joe" who had surgery with Nath. We saw Nath that Tuesday morning after his surgery...he was telling us about this great case he had that morning on an adult male...ironic...so glad to hear he's doing well. We also saw Dr. Shenaq at Texas Children's and we were very impressed. Both Doctors proposed the exact same surgery (releasing those tight muscles under her arm)..both were concerned about how much deltoid strength she had, and both said they could get some nice improvement..(It's so hard to even let myself imagine..)even though she is a little older than the ideal patient. Like so many of the postings I've read, she would like to do her own hair and be able to use both arms in basketball. This is beyond a miracle for our family...we never knew there was even a remote possibility of improvment. It's so scary because I happen to be a surgical assistant and my husband a paramedic....and our doctors here, supposedly the best of the best, say (and I quote) "These doctor's in Texas are building an empire on families broken hearts...you will believe they can help because you and all these other people, want it more than anything"...With that being said, we have gone with our gut feeling and scheduled her surgery on January 31st!!! I'm crying so much right now that I can't see the keyboard. OK, so here is where I look to all of you for your expertise...we liked both Doctor's...we decided to go with Shenaq....any feed back on this decision? Has anyone gone through this recently-especially with older children? Molly is so ready...she gets the big picture...she understands what she's starting...She is an 8th grader, who has a 4.0, she is her class president..I only brag about her because she is so strong mentally, so much stronger that I would be. She is right handed, so I'm not sure how we'll go about school...as of now, she still wants to go...knowing she'll be the statue of liberty for a couple months (they said her splint would be on a little longer because she is so tight). Forgive me for rambling, as all of you know, to talk about this for the first time to people who know exactly what you're talking about is completely unbelievable. Any input is so appreciated. To not feel alone with this anymore, is already more than we've ever dreamed of.

[Salina]

Hello Katie.
I can say that i know how you feel.
Im glad that you have been told of this board.
I can not answer anything about surgery we are still looking for our child.
My Daughter is 6 m And has robpi.
She is needing primary surgery.
I can say welcome.
There is alot of people on this board who can give you good advise.
It really got to me when you said you have been crying this is how ive been this past 6m.
Just hang in there you will get good input.
Salina

[admin]

Hello and welcome. I am glad you found this site and hope you gain the support and knowledge that you are looking for. We just got back a few months ago from Texas, where our older daughter had surgery. We chose Dr. Nath, but it is so important that you feel comfortable with the surgeon you choose. You have to follow your gut feeling. I can tell you that we have seen nothing but fabulous results from this surgery. It is truly unbelievable. Our daughter is doing things that we never thought would be possible. I can also tell you that the splinting is not as bad as you imagine. We worried so much about it before the surgery and it was honestly no big deal at all. Our daughter ajusted to it easily and quickly. It is an advantage having an older child that you can reason with and make understand that it is for their own good. Dr. Nath and the entire staff at Texas was truly amazing. They are all so gracious and kind, as you will soon see for yourself. We recieved nothing but amazing care from everyone, including the doctor, nurses, cleaning people, therapists, meal servers, etc. You will be surprised at how well you are treated there. I wish you the very best with the surgery, and know you will be so happy with the results you will see. Take a deep breath and believe in your decisions and choices, you are doing what is best for your daughter. If you are traveling out of state or have any specific qiestions, please feel free to post and I will answer. I, unfortunately, cannot post with my name right now, as we are in the midst of trial, which hopefully will be ending here in the next week or so.

[cbe411]

Go with your gut! Who ever you feel the most comfy with you have to go with. Many of us see different doctors for different and none of them are any better than others... many of them just have different attack plans! Good luck and WELCOME to our little club here!

COurt xx

[admin]

Hi Katie,
Well I know what you are going thru. I have a 12 yr.old daughter(DeeDee) She was 9lbs.9ozs. I had her is a real small hospital I like to refer to as just a Bandaid Station. At first the doctor said he thought he broke her collar bones. But then he said "I guess I pulled on her arms to hard. He broke her left arm and did the damage to her right. I was told at the time that there was NO sugerey that can be done to improve her use of her right arm. So I just left it at that. Till I read about a boy who had a sugerey done and it really helped him, It said that he could swim using both arms. So I did some checking on it and was told from A doctor in Shriners that they could not do anything to improve the use of her arm at this time but come back in a year and there might be, So I was going to let it go again so I email Dr. Nath and told him what was told to me. But He said in a email that he would like to see a video of her so I was working on getting one together but luckly he comes to NJ and we got to go and see him in person and he told me that the "Mod Quad" sugerey could be done on her. But then we had another problem come up when I called his office in Texas, He don`t take insurance so I had to come up with $2500. which I don`t have. So I called Texas Childerns Hospital and they would handle all paper work for the insurance. Dr. Shenaq did the sugerey and he was just great. he and Dr.Roth talked to us before she went into sugerey and they talked to us after she came out. So it has been 3 weeks today since DeeDee had her sugerey and she is doing great. She had very little pain,She is in school. I take her everyday and pick her up cause it is just to much of a hassel for her to ride the bus. The school is working with her needs in school,She has help with her books,she leaves her class 5mins. early. She is in the 6th grade.
Sorry to rambling but at times I just get carried away. You will make the right decision. If you want you can email me. Have a great day Kim and DeeDee

[Carolyn J]

Hello Katie and Molly, I posted on the Adult Board, did you see it?
Let's hear it for following Mom's instincts!!
Yeay, Yay Yay!!---ok, I've had too much coffee this morning! LOL
Carolyn J

[CW1992]

Hi and welcome!,
My daughter is a 7th grader, also a 10 pounder, left arm injury, top of her class, very athletic, and sounds so much like your daughter. We have a lot in common! My daughter does not want surgery though, but if she did - like your daughter - we would surely schedule. Swimming has helped loosen Brittney's arm (not sure if Molly likes to swim but it has worked great for Brittney) One thing though - after this many years with her injury you do not have to rush your decision - there is time and maybe a summer surgery might be best so that she can finish school without the cast. It gets overwhelming when you find out that there is hope. I've been there - it's exciting but so scary.
You know what is best - if Dr Shenaq (my personal choice) sounded like the way to go - then go with your gut - but you'd probably feel better about your decision if you research the surgery and know what to expect. Your daughter sounds very strong and since she wants the surgery she will be even more determined. The cast will not last as long as the benefits that she might get.
I would be crying too - it's scary when your child is doing so well and you worry if maybe you might mess up the 'greatness' (you know what I mean) but it sure sounds like Molly is a fighter and this is what she wants. The surgery does not have to be so soon though, you might feel more at ease if you do not rush in to this. I'm guessing Molly must be around 13. My daughter is 12, and I do understand your feelings. I think that as they get older and you find out that there is hope it is very exciting - but you can take some time in deciding - there is no rush.
Christy

[admin]

Dear Katie:
We use Dr. Shenaq and we love him! My daughter is only 5, but has had 3 surgeries at tch. We just got back from texas, and she drew pictures of herself and Dr. Shenaq and her splint!
The team there is wonderful. If you have any questions, please ask.
You can email me.

claudia

[JaimeC]

Katie, my son is 9 and has had four surgeries at Texas Children's Hospital. The first three with Dr. Nath and the last with Dr. Shenaq. I have utmost confidence in both doctor's. I don't think you can go wrong with either.
Glad you found the website and all the information out there. It's hard to believe that in this day and age, people are still getting responses about surgery that you got. Amazing!
Keep us informed
Jaime

[Barbara]

Katie, I don't believe you can go "wrong" with either Dr. Shenaq or Dr. Nath for surgery on your daughter's arm. Go with whoever you feel most comfortable with. I've been reading the information on these message boards for 2 1/2 years now, and I think that surgery to help your daughter's arm is the way to go. It's interesting that the doctors in your area are so negative about the surgery; we heard the same thing from the doctors in our area. When my granddaughter was born (lobpi) in March 2002, we were told that there was no surgery available for her Erb's palsy and later by a pediatric neurologist in our area the surgery might make her arm "worse." Despite all that negative advice, we contacted Texas Childrens Hospital and my granddaughter has had 2 surgeries there (primary at 5 mo. and mod quad at 12 mo.) Combined with therapy and TES, she has made amazing progress. We are very pleased. Your daughter sounds like a wonderful girl, and I am sure she will do well after surgery.