What questions to ask? (Tar Syndrome surgery)

Arrowwind09

\r\n \r\n I am really unsure on this one because I do not know the procedure nor its rate of effectiveness but I will venture this...
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\nFirst of all the child will experience pain if it is painful. Being young does not disqualify you from pain. Will he remember it? Surely as much as anyone else remembers pain. Will he tolerate it well? Children often have a capacity to tolerate and endure pain that is superior to adults, in my opinion, as a pediatric nurse for so long. It is not that they have less pain, but they often do not approach things with as much fear or trepidation that overshadows their experience.
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\nIs he going to a Shriner\'s Hospital?
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\nThey have gotten very good at some of these corrective procedures over the last 10 years or so.. Sometimes doing these procedures when young provides a better outcome than when older, as the body will continue to grow minus the alignment difficulties in the joint. I would think that for the childs psychological welfare being able to wipe his own butt will be priceless by the age of 5.
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\nI have a friend who has a leg that was shorter than the other, significantly shorter. It was a real problem. The family decided to have the longer leg shortened to match.
\nToday he has just become a physician in orthopedics....so you never know how things are perceived or processed by the mind in a child.\r\n

Burnell

\r\n \r\n My wife is a surgical tech, when she wakes up tomorrow I\'ll see what she thinks for you and try and report back!\r\n

kind2creatures

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\r\n Originally Posted by just me\r\n

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.. Questions, opinions, help...something.... if you had a child with this, would you do the surgury.... and for you new folks, I have pictures of grandson already posted... search my threads for Tar syndrome.. Thanks for the help

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Just me, I don\'t blame you for being upset. Of course it will cause the baby pain, but sometimes it\'s worth the surgery to correct the condition. I know nothing about Tar Syndrome or the surgery, but if I come across anything that may help, I\'ll post it. Had trouble finding the thread with search, so I posted the link for others.
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\n/f78/1965-tar-syndrome.html\r\n

just me

\r\n \r\n Thanks everyone for the info... We are all on new ground also... Tar syndrome doesnt happen very often, so its not like there is a wealth of information out there... I discovered the album section, so have posted three pictures in an album.. After the surguries and he comes home, i will post more... These pictures are from aug 09. He has done a bit of growing since then, but not much.
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\nSo after much discussion, mom and dad have decided to do one arm at a time... Taking into consideration that doing both arms, would hinder learning, eating, playing, walkng, and just being a normal kid... Things will be rough with one arm, but doable... doing both, they have decided, might be too much for not only grandson, but them and grandmom too. And that way, also, if they deem that the surgury is not worthwhile and wont really help him in the long run, then they dont have to do the other arm..... Will keep you updated as best I can, I think its gonna be a long couple of months\r\n

just me

\r\n \r\n Has this album option been here for awhile??? How did I miss this!!!! I love it! It was easy to upload pictures!! Thanks Kevin\r\n

kind2creatures

\r\n \r\n Justme, your Grandson is very cute! I wish the best for him. Doing one arm at a time seems like a good plan. Let us know how he\'s doing, and you take care yourself too. Positive thoughts being sent your way...\r\n

athletic dept

\r\n \r\n I would not trust the doctors who say surgeries are a piece of cake. Doctors can and do make mistakes. Also hospitals are not a safe place to be. He is almost guaranteed to acquire an infection like staph and it will be extremely hard to get rid of.
\nI sent the boy some energy. He will probably not need the surgery now.\r\n

just me

\r\n \r\n He\'s home He\'s home He\'s home!!!! Grandson had surgury Tuesday, was admitted Monday morning... had a transfusion becuase his platlette count was only 40 thou and they wanted it at 50 or above... but thats ok... They wheeled him back (well ok, dad carried him most of the way) about ten thirtish, and he was back in his room between noon and one, so not too bad. He slept alot, when he first woke up, I think he was more scared then hurting... He didnt understand what was going on... but he gradually calmed down, slept most of the day... and by the next morning was up walking around... They had planned on keeping him until sunday, but everything seems to be moving better then normal, so he was released this morning!!! I missed my grandbaby!!! Anyhow, I posted pictures of the trip... pictures of the new hardware, and a description as best i know of what happened...Maybe these pictures will help someone in the future, to know what they are looking at.. if folks would share more information, we might not have been so concerned.... Dont get me wrong, Im still not liking the idea of doing the surguries, but not near as bad as we expected\r\n

just me

\r\n \r\n So here is a silly thought, question, wondering... In everything that has happened with Bryson, we keep seeing that he is recouping/healing faster then nomal tar syndrome babies.... Normally these babies have to have periodic blood transfusion for a year to 18 months old. Grandson leveled out at 6 months. skin problems are also normal in tar syndrome babies, but we figured out the probiotic thing and that made a big difference, but it still flares up if we dont keep up with the probiotic, or if he gets lots of sugar. And now with the surgury, the doctor said, that the surgury didnt take as long as normal, because he seemed to have alot more play in his wrist then most tar syndrome babies. And then they send him home two days early because he is adjusting faster.....Could all of these differences be because we use the raw goats milk instead of any other baby formula??? he has been on raw goats milk since about two maybe three months old..Could it have really made that much of a difference???\r\n

athletic dept

\r\n \r\n He\'s recuperating faster because of the energy I sent him.\r\n

kind2creatures

\r\n \r\n Just me, I\'m happy to hear he\'s doing so well. I took a look at your photos, thanks for sharing his story and keeping all of us updated. Give him a big hug for me! \r\n

Barrett

\r\n \r\n what question should I ask my health insurnace co. regarding the delivery expenses before I pay the hospital?\r\n

WANDA

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\r\n Originally Posted by just me\r\n

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My grandson is schedualed to go into surgury in a week or so, to have a monolateral fixator attached to his arms in order to stretch the tendons, to prepare for a rod to be placed inside, so that his hands will be straight. My opinion, is that they are jumping into this too quickly.. The doctors are saying that because the child is two, he wont remember the pain and that he will bounce back quickly..Sure it will be uncomfortable, but he will get use to this thing being on both arms....Somebody help me here!!!! Is this not going to cause pain? do two years old really not remember the pain???
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\nWhat questions should my son be asking the doctors. They are all saying this is a breeze of a surgury... according to the paperwork they sent, these things will be on his arm for anywhere from a month, up to a year.. Give me some pros and cons here folks... Give me some reasons why he should not have this surgury at this age. and let me explain, grandson can use his hands, not his thumb as much, but working on that... he can eat, he can color, he can pick a penny up off the floor. The only thing I have seen that he cant do, at this point, is reach his butt to wipe it when he gets potty trained. And besides that, this surgury isnt for bone lengthening, its to straighten the hand... Questions, opinions, help...something.... if you had a child with this, would you do the surgury.... and for you new folks, I have pictures of grandson already posted... search my threads for Tar syndrome.. Thanks for the help

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My dughter is going to have a cesarean because her baby probably has Tar Syndrome, in the sonogram the radius are not visible or maybe partially formed in both hands. Where can go to see the photos of your grandson and how is he doing after surgery. i need some advise because this will be the same in my grandson.\r\n

kind2creatures

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\r\n Originally Posted by WANDA\r\n

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My dughter is going to have a cesarean because her baby probably has Tar Syndrome, in the sonogram the radius are not visible or maybe partially formed in both hands. Where can go to see the photos of your grandson and how is he doing after surgery. i need some advise because this will be the same in my grandson.

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Wishing the best for your daughter and her baby. Here are Justme\'s photo albums...https://www.natmedtalk.com/album.php?u=257\r\n

just me · � #1 � 04-09-2010, 07:48 AM

My grandson is schedualed to go into surgury in a week or so, to have a monolateral fixator attached to his arms in order to stretch the tendons, to prepare for a rod to be placed inside, so that his hands will be straight. My opinion, is that they are jumping into this too quickly.. The doctors are saying that because the child is two, he wont remember the pain and that he will bounce back quickly..Sure it will be uncomfortable, but he will get use to this thing being on both arms....Somebody help me here!!!! Is this not going to cause pain? do two years old really not remember the pain???

What questions should my son be asking the doctors. They are all saying this is a breeze of a surgury... according to the paperwork they sent, these things will be on his arm for anywhere from a month, up to a year.. Give me some pros and cons here folks... Give me some reasons why he should not have this surgury at this age. and let me explain, grandson can use his hands, not his thumb as much, but working on that... he can eat, he can color, he can pick a penny up off the floor. The only thing I have seen that he cant do, at this point, is reach his butt to wipe it when he gets potty trained. And besides that, this surgury isnt for bone lengthening, its to straighten the hand... Questions, opinions, help...something.... if you had a child with this, would you do the surgury.... and for you new folks, I have pictures of grandson already posted... search my threads for Tar syndrome.. Thanks for the help

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