Guest guest Posted October 13, 2005 Report Share Posted October 13, 2005 First off a great big thanks to so many caring and concerned people for all of your responses, support and suggestions, as well as direction to articles, etc. I feel I should clarify a few things so that you can all have a fuller understanding of the issues with Hayden's skin. It is not my intention to bash on Dr. Alvarez because I feel that she truly believes in what she is doing. And she has had success, no doubt about it, as I have seen the older children that she has treated from infancy. They look fine and all of the parents seem to think the Botox is a good idea and that it works. It is not like Hayden has not made progress, either. His feet are worlds different from what they were at birth. I will post some photos so you can see the comparison. My biggest issues have been with her particular bedside manner (blunt) and the fact that Hayden screams so much when she is examining him or when she was holding his foot in position for the casting. When I took the casts off, there were often bruises across the tops of feet from where she had held his foot. This was very disconcerting for me, but I was always told that this was normal. Let me say that this did not offer me much reassurance. No one likes to see their child marked in any way and while I understand that the treatment is going to involve discomfort in some form along the way, it honestly was starting to feel like ritual torture every week. The casts that Hayden had applied were fibreglass with a batting-type underlayer. I do not know what fibre it was, but it appeared to be cotton. The final casts he had were put on with a cotton flannel underlay which actually made his skin worse and was stuck to his skin in many places where it had been weeping. There has been another little girl undergoing the same treatment as Hayden with the same issues. Both babies were large at birth (Hayden 9 pounds, Baby Girl 9 pounds 13 ounces) which made them sweaty and overly warm to start with. We had an unusually hot and humid summer this year that did not help. Having a cast on in that kind of heat must be like wearing three pairs of pants under a snow suit in the Bahamas! Knowing that the other child was enduring the same problems with her skin made me think that this was not an allergic reaction. It was suggested to me that the reason his feet were taking longer to correct was because it was so hot - his feet were swollen and they could not get a proper position each time. The second to last casts we had on were done by another doctor because we were there on a different day and I noticed that he worked very hard to get a " heel " in the cast and took his time. I did see a big difference after that cast came off. That being said, the Club Foot Clinic at Children's is very busy and I know they are trying to see as many people as they can. I'm still feeling very uncertain about the boots and bar. I think they are the Dennis Brown type. I kind of got a " just tough it out " response when I expressed concerns about how well they are fitting him as they continue to slip on his feet or come completely off. He's a real kicker and don't think for a moment he hasn't realized he can free himself if he tries hard enough! I know that some of the fussiness can come from them just not wanting to be in them as they are restrictive. But when I see his foot has slipped and he is cranky, I can't understand how that would be comfortable and don't think that I should be having to replace/adjust them all day long. How can they do their job if they don't fit properly? I have tried the socks without seams and the socks with grips on the bottom and neither seems better than the other. When I look at Hayden's feet in socks, the right foot seems to be be fine, but the left does not fill out the heel. I am interested in meeting with Dr. Pirani. If he decides that Hayden will need more casts, then I am okay with that but it still brings the skin issue along with it. And maybe he will have other suggestions to that end. I am not keen on the idea of a tenotomy, but after thinking about it a bit, I don't think that it is any more or less invasive than the Botox treatment. The Botox consisted of inserting the needle and then moving it all around the tendon and injecting it bit by bit. I suppose if it would help bring the tendon down just that little bit more, then I would agree to it. At any rate, I am glad that I have this group of people to rely on and appreciate all of your kind words! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2005 Report Share Posted October 13, 2005 First off a great big thanks to so many caring and concerned people for all of your responses, support and suggestions, as well as direction to articles, etc. I feel I should clarify a few things so that you can all have a fuller understanding of the issues with Hayden's skin. It is not my intention to bash on Dr. Alvarez because I feel that she truly believes in what she is doing. And she has had success, no doubt about it, as I have seen the older children that she has treated from infancy. They look fine and all of the parents seem to think the Botox is a good idea and that it works. It is not like Hayden has not made progress, either. His feet are worlds different from what they were at birth. I will post some photos so you can see the comparison. My biggest issues have been with her particular bedside manner (blunt) and the fact that Hayden screams so much when she is examining him or when she was holding his foot in position for the casting. When I took the casts off, there were often bruises across the tops of feet from where she had held his foot. This was very disconcerting for me, but I was always told that this was normal. Let me say that this did not offer me much reassurance. No one likes to see their child marked in any way and while I understand that the treatment is going to involve discomfort in some form along the way, it honestly was starting to feel like ritual torture every week. The casts that Hayden had applied were fibreglass with a batting-type underlayer. I do not know what fibre it was, but it appeared to be cotton. The final casts he had were put on with a cotton flannel underlay which actually made his skin worse and was stuck to his skin in many places where it had been weeping. There has been another little girl undergoing the same treatment as Hayden with the same issues. Both babies were large at birth (Hayden 9 pounds, Baby Girl 9 pounds 13 ounces) which made them sweaty and overly warm to start with. We had an unusually hot and humid summer this year that did not help. Having a cast on in that kind of heat must be like wearing three pairs of pants under a snow suit in the Bahamas! Knowing that the other child was enduring the same problems with her skin made me think that this was not an allergic reaction. It was suggested to me that the reason his feet were taking longer to correct was because it was so hot - his feet were swollen and they could not get a proper position each time. The second to last casts we had on were done by another doctor because we were there on a different day and I noticed that he worked very hard to get a " heel " in the cast and took his time. I did see a big difference after that cast came off. That being said, the Club Foot Clinic at Children's is very busy and I know they are trying to see as many people as they can. I'm still feeling very uncertain about the boots and bar. I think they are the Dennis Brown type. I kind of got a " just tough it out " response when I expressed concerns about how well they are fitting him as they continue to slip on his feet or come completely off. He's a real kicker and don't think for a moment he hasn't realized he can free himself if he tries hard enough! I know that some of the fussiness can come from them just not wanting to be in them as they are restrictive. But when I see his foot has slipped and he is cranky, I can't understand how that would be comfortable and don't think that I should be having to replace/adjust them all day long. How can they do their job if they don't fit properly? I have tried the socks without seams and the socks with grips on the bottom and neither seems better than the other. When I look at Hayden's feet in socks, the right foot seems to be be fine, but the left does not fill out the heel. I am interested in meeting with Dr. Pirani. If he decides that Hayden will need more casts, then I am okay with that but it still brings the skin issue along with it. And maybe he will have other suggestions to that end. I am not keen on the idea of a tenotomy, but after thinking about it a bit, I don't think that it is any more or less invasive than the Botox treatment. The Botox consisted of inserting the needle and then moving it all around the tendon and injecting it bit by bit. I suppose if it would help bring the tendon down just that little bit more, then I would agree to it. At any rate, I am glad that I have this group of people to rely on and appreciate all of your kind words! Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.