Comments on: The post I said I’d do, but never did… http://knoahsarc.org/2009/11/19/the-post-i-said-id-do-but-never-did/ What is Normal? Mon, 22 Feb 2010 04:54:49 -0600 http://wordpress.org/?v=2.8.4 hourly 1 By: Laura Wolf http://knoahsarc.org/2009/11/19/the-post-i-said-id-do-but-never-did/comment-page-1/#comment-3983 Laura Wolf Sun, 03 Jan 2010 01:33:54 +0000 http://knoahsarc.org/?p=1266#comment-3983 Wow, is all I can say. I know that the kyphosis of the spine has to be watched but never knew how bad it could get. Nate saw an orthopeadiac surgeron at 19 months and was cleared. We also saw Dr. Mckenzie at an medical convention in Indianapolis and was told everything was good. I really like him and would continue to see/consult with him. I think there is another doc with a rally long name. I'll search for the info if you need it. Other than that I think you need to do what works for your family, helps Knoah the best and has the best outcome/results. I know it's a lot but an awesome mom like you can do it! Wow, is all I can say. I know that the kyphosis of the spine has to be watched but never knew how bad it could get. Nate saw an orthopeadiac surgeron at 19 months and was cleared. We also saw Dr. Mckenzie at an medical convention in Indianapolis and was told everything was good. I really like him and would continue to see/consult with him. I think there is another doc with a rally long name. I’ll search for the info if you need it. Other than that I think you need to do what works for your family, helps Knoah the best and has the best outcome/results. I know it’s a lot but an awesome mom like you can do it!

]]> By: Tracy Smith http://knoahsarc.org/2009/11/19/the-post-i-said-id-do-but-never-did/comment-page-1/#comment-3794 Tracy Smith Mon, 23 Nov 2009 19:26:14 +0000 http://knoahsarc.org/?p=1266#comment-3794 I know a woman who took her daughter to see Dr. Ain several years ago. He recommended surgery for her daughter's kyphosis. They were pretty shocked to here that, so they got another opinion. They went to California to see an orthopedic doctor. I think she said his name was Toller, or something like that. I am pretty sure at that time he was practicing at the Cedars-Sinai Clinic. The second opinion did not recommend surgery. I could find out more specifics if you want me to do that. I know a woman who took her daughter to see Dr. Ain several years ago. He recommended surgery for her daughter’s kyphosis. They were pretty shocked to here that, so they got another opinion. They went to California to see an orthopedic doctor. I think she said his name was Toller, or something like that. I am pretty sure at that time he was practicing at the Cedars-Sinai Clinic. The second opinion did not recommend surgery. I could find out more specifics if you want me to do that.

]]> By: Kim http://knoahsarc.org/2009/11/19/the-post-i-said-id-do-but-never-did/comment-page-1/#comment-3790 Kim Mon, 23 Nov 2009 14:47:21 +0000 http://knoahsarc.org/?p=1266#comment-3790 You know that you and I talked about this the other night and we will talk more about it tonight. I just hope you can get a third opinion that you feel comfortable with. You know I am a bit partial to you being in Baltimore for selfish reasons of being able to visit you. LOL (like when you told Will you could move to Richmond because I was here). You know that you have to do what is best for our little Knoah. P.S. there is a package on it's way for Knoah. You know that you and I talked about this the other night and we will talk more about it tonight. I just hope you can get a third opinion that you feel comfortable with. You know I am a bit partial to you being in Baltimore for selfish reasons of being able to visit you. LOL (like when you told Will you could move to Richmond because I was here). You know that you have to do what is best for our little Knoah.
P.S. there is a package on it’s way for Knoah.

]]> By: Jenn Greene http://knoahsarc.org/2009/11/19/the-post-i-said-id-do-but-never-did/comment-page-1/#comment-3783 Jenn Greene Sun, 22 Nov 2009 12:53:56 +0000 http://knoahsarc.org/?p=1266#comment-3783 I'm so sorry that you are faced with this tough decision, but I too would look for a third opinion. Simon sees Dr. Ain, and he is wonderful and we trust him, but that is tough when you have two top doctors disagreeing on this. I wish I had more advice for you. We are thinking of you guys and praying that you get the answers you need soon! I’m so sorry that you are faced with this tough decision, but I too would look for a third opinion. Simon sees Dr. Ain, and he is wonderful and we trust him, but that is tough when you have two top doctors disagreeing on this. I wish I had more advice for you. We are thinking of you guys and praying that you get the answers you need soon!

]]> By: melissa swartley http://knoahsarc.org/2009/11/19/the-post-i-said-id-do-but-never-did/comment-page-1/#comment-3766 melissa swartley Fri, 20 Nov 2009 17:42:44 +0000 http://knoahsarc.org/?p=1266#comment-3766 Oh boy! Wow! Looking at those pictures of Knoah's back I was surprised! From the other pictures I have seen of him his clothing must hide the severity of this! We see Dr. Ain and he is currently concerned for Sonya's C1C2 spine instability and see's a future fusion down the road. We also see Dr. Leet (ortho) at Kennedy Krieger Institute near Hopkins who agrees. However our docs at AI duPont in DE don't see this. We see Dr. Kruse (OI ortho) at duPont and Dr. Bober (genetics) but I'm sure that Dr. Mackenzie would be a good choice as he is well respected in the dwarfism community as well! I do know of one family in Columbus OH whose child with Campomelic Dysplasia has had many spinal fusions with Dr. Ain for his severe kyphosis and scoliosis. I think he had his first fusion at a young age, but not as young as Knoah. I have heard that dr. Ain likes to operate, that is coming from Dr. Bober... not sure on it's truth. How frustrating! We are thinking of you all and saying prayers! Hugs! Oh boy! Wow! Looking at those pictures of Knoah’s back I was surprised! From the other pictures I have seen of him his clothing must hide the severity of this! We see Dr. Ain and he is currently concerned for Sonya’s C1C2 spine instability and see’s a future fusion down the road. We also see Dr. Leet (ortho) at Kennedy Krieger Institute near Hopkins who agrees. However our docs at AI duPont in DE don’t see this. We see Dr. Kruse (OI ortho) at duPont and Dr. Bober (genetics) but I’m sure that Dr. Mackenzie would be a good choice as he is well respected in the dwarfism community as well! I do know of one family in Columbus OH whose child with Campomelic Dysplasia has had many spinal fusions with Dr. Ain for his severe kyphosis and scoliosis. I think he had his first fusion at a young age, but not as young as Knoah. I have heard that dr. Ain likes to operate, that is coming from Dr. Bober… not sure on it’s truth. How frustrating! We are thinking of you all and saying prayers! Hugs!

]]> By: Lisa Hedger http://knoahsarc.org/2009/11/19/the-post-i-said-id-do-but-never-did/comment-page-1/#comment-3763 Lisa Hedger Fri, 20 Nov 2009 16:52:16 +0000 http://knoahsarc.org/?p=1266#comment-3763 Boy, that's a TOUGH one. Ain and Pauli are supposed to be the best and they COMPLETELY disagree on this. AHHHHH!Sounds like you've got some good ideas for a 3rd opinion and I hope one of them works. Keeping my fingers crossed! Lisa Boy, that’s a TOUGH one. Ain and Pauli are supposed to be the best and they COMPLETELY disagree on this. AHHHHH!Sounds like you’ve got some good ideas for a 3rd opinion and I hope one of them works. Keeping my fingers crossed!
Lisa

]]> By: Emily http://knoahsarc.org/2009/11/19/the-post-i-said-id-do-but-never-did/comment-page-1/#comment-3761 Emily Fri, 20 Nov 2009 13:55:07 +0000 http://knoahsarc.org/?p=1266#comment-3761 Tonya, I am so sorry you are faced with this decision. I can't imagine the stress that is weighing on your mind. I think you are right to seek a third opinion. We see Dr. Mackenzie at DuPont in Wilmington, DE. He is wonderful and I trust him implicitly. I know many families have sent x-rays for him to evaluate without having to travel there for a visit. Similar to Hopkins, there is a wonderful Ronald McDonald House right across from DuPont, should you need to stay there. Here is the website: http://nemours.org/hospital/de/aidhc/service/skeletal.html Best of luck! Keep us posted! Tonya, I am so sorry you are faced with this decision. I can’t imagine the stress that is weighing on your mind. I think you are right to seek a third opinion. We see Dr. Mackenzie at DuPont in Wilmington, DE. He is wonderful and I trust him implicitly. I know many families have sent x-rays for him to evaluate without having to travel there for a visit. Similar to Hopkins, there is a wonderful Ronald McDonald House right across from DuPont, should you need to stay there. Here is the website: http://nemours.org/hospital/de/aidhc/service/skeletal.html
Best of luck! Keep us posted!

]]> By: amy welch http://knoahsarc.org/2009/11/19/the-post-i-said-id-do-but-never-did/comment-page-1/#comment-3760 amy welch Fri, 20 Nov 2009 12:05:05 +0000 http://knoahsarc.org/?p=1266#comment-3760 It never hurts to get another opinion. Is there another doctor in the area you trust? It never hurts to get another opinion. Is there another doctor in the area you trust?

]]> By: ian rideout http://knoahsarc.org/2009/11/19/the-post-i-said-id-do-but-never-did/comment-page-1/#comment-3759 ian rideout Fri, 20 Nov 2009 11:39:03 +0000 http://knoahsarc.org/?p=1266#comment-3759 hi my son ethan has achondroplasia he is 2 and has been in a brace now for 4 months, 18 months ago he measured 43 degrees and now he's measuring 63 degrees, the doctor hasn't a lot of experience with little people as we live in england, he has said that ethan will have to wear the brace for another year to see if that helps. hopefully now ethans walking that will help straighten him up. hi my son ethan has achondroplasia he is 2 and has been in a brace now for 4 months, 18 months ago he measured 43 degrees and now he’s measuring 63 degrees, the doctor hasn’t a lot of experience with little people as we live in england, he has said that ethan will have to wear the brace for another year to see if that helps. hopefully now ethans walking that will help straighten him up.

]]> By: jack http://knoahsarc.org/2009/11/19/the-post-i-said-id-do-but-never-did/comment-page-1/#comment-3756 jack Fri, 20 Nov 2009 05:20:00 +0000 http://knoahsarc.org/?p=1266#comment-3756 I got no advice for you. I'm just sitting here with tears in my eyes thinking about all of this -- and if just reading about someone else's child facing this makes me tear up, I can't imagine how you're feeling. What a tough choice you've been presented with! It stinks. I know that you just want to do what's best for your wonderful kid. And when you're not sure which path is the right one to take because there is no absolutely right answer -- well, that has to be beyond awful. I've never been in a situation like this one for myself or my loved ones. But one small question comes to mind for Dr Pauli. (It's probably not even a good question, I don't know enough to ask those.) How bad would Knoah's kyphosis need to be for Dr Pauli to recommend surgery sooner rather than later? I'm sure he has a treatment plan in mind which includes that possibility. I'll be sending good thoughts and wishes your way. I wish I had more to offer than that. I got no advice for you. I’m just sitting here with tears in my eyes thinking about all of this — and if just reading about someone else’s child facing this makes me tear up, I can’t imagine how you’re feeling.

What a tough choice you’ve been presented with! It stinks. I know that you just want to do what’s best for your wonderful kid. And when you’re not sure which path is the right one to take because there is no absolutely right answer — well, that has to be beyond awful.

I’ve never been in a situation like this one for myself or my loved ones. But one small question comes to mind for Dr Pauli. (It’s probably not even a good question, I don’t know enough to ask those.) How bad would Knoah’s kyphosis need to be for Dr Pauli to recommend surgery sooner rather than later? I’m sure he has a treatment plan in mind which includes that possibility.

I’ll be sending good thoughts and wishes your way. I wish I had more to offer than that.

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