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Discussion Starter · #1 ·
Curious if anybody has any pictures of their childrens backs right after birth and any scar pictures.. and also curious as to how old they are now and what they are doing<br><br>
BTW.. I HAVE A CHILD WITH SPINA BIFIDA!!!!!!! <--- Odd now?
 

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My daughter has a form of spina bifida called Lipomyelomeningocele. So I don't know if thats what you are looking for or not. Her back was closed and not open.
 

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I have to say that this is sort of an odd thing to come ask parents about with no other explanation.<br><br>
We have one little pic of my daughter's back before closure, but you can't really see it well. I think we have pictures of the bandage on her back. I don't think we have any pictures of her scar.
 

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<div>Originally Posted by <strong>chann96</strong> <a href="/community/forum/post/8157461"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">I have to say that this is sort of an odd thing to come ask parents about with no other explanation.<br><br>
We have one little pic of my daughter's back before closure, but you can't really see it well. I think we have pictures of the bandage on her back. I don't think we have any pictures of her scar.</div>
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Us too.
 

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Discussion Starter · #5 ·
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<div>Originally Posted by <strong>chann96</strong> <a href="/community/forum/post/8157461"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">I have to say that this is sort of an odd thing to come ask parents about with no other explanation.<br><br>
We have one little pic of my daughter's back before closure, but you can't really see it well. I think we have pictures of the bandage on her back. I don't think we have any pictures of her scar.</div>
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Not odd at all.. I thought the question about "What are they doing now" kind of explained it.. Im curious how much was effected as far as the back goes and what they are doing now developmentally..
 

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<div>Originally Posted by <strong>Khourtniey</strong> <a href="/community/forum/post/8157898"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">Not odd at all.. I thought the question about "What are they doing now" kind of explained it.. Im curious how much was effected as far as the back goes and what they are doing now developmentally..</div>
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I think the 'oddity' comes about in that you didn't state in your post that you have a child with spina bifida. Iif you don't, it looks like voyeurism. Not everyone is familiar with the posts in "post your child's diagnosis." Since your child does have spina bifida, it's a very legit question.
 

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Discussion Starter · #7 ·
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<div>Originally Posted by <strong>LynnS6</strong> <a href="/community/forum/post/8158151"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">I think the 'oddity' comes about in that you didn't state in your post that you have a child with spina bifida. Iif you don't, it looks like voyeurism. Not everyone is familiar with the posts in "post your child's diagnosis." Since your child does have spina bifida, it's a very legit question.</div>
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*shrug* I thought it should have been implied..
 

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Oops! I didn't answer the "what are they doing now part". My dd is 16 months old. Her lession level is L3-L5. She is sitting but is a bit wobbly sometimes. When on her tummy she pushes up with her arms and pushes backward across the floor. Her hips are abducted so she struggles to roll over. She has a pair of TheraTogs and when she is wearing them she can roll more consistently. She has a Star Car and is all over the house with it... into cupboards and dog food. We go to Shriner's at the end of the month (we haven't been for nine months) so I am anxious to see what they are going to say.
 

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<div>Originally Posted by <strong>Khourtniey</strong> <a href="/community/forum/post/8160008"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">*shrug* I thought it should have been implied..</div>
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No, because unfortunately even here at mothering some people are really messed up about things. I am always a little leery about things unless I know with fair certainty why they are asking. I'm sorry if you were offended by my statement, but I think it was a fair one.<br><br>
Anyway to answer the second part of your question. My daughter's lesion was L5-S1 and she had rather significant hydrocephalus. She had her back closed at 12 hours old and her VP shunt placed at 5 days old. She'll celebrate her fourth birthday at the end of the month. She is absolutely amazing. She has no braces. She walks, runs, and jumps. I think her gross motor development is still slightly behind, but that is also affected by her apraxia I believe. We haven't had PT really since she was 2.5 years when her PT said she would just continue to develop on her own at that point. Her orthopedist commented last summer that he was amazed at how much strength she displays with how little bone she has in her lower spine. She is also super smart.<br><br>
Medically she has done very well also. She hasn't needed (knock on wood) a shunt revision or detethering or any other surgery since her initial ones at birth (her n/s was fabulous). She has a neurogenic bladder and is cathed 5-6 times a day. We are working on getting her to the point of being socially continent. She is allowed out the house in underpants a little bit at this point, but heck (as her urologist recently pointed out) there are lots of 4 year old kids still in diapers so that's not really unusual. She shows no signs of kidney reflux. She has a "significant" chiari II malformation per her neurologist, but so far is asymptomatic.<br><br>
You asked about scars and I just wanted to mention that while her scar is definitely still visible it has faded quite a bit at this point. I haven't ever put anything on it to try to help it fade; it's just that baby elasticity.<br><br>
Sorry this is a little long. Given the opportunity I could brag on her all night long. She is my stubborn, amazing, strong, smart, beautiful, sweet girl.
 

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My 6 year old daughter also has lipomyelomingeocele. She had spinal cord detethering when she was 3 months old. She does have a neurogenic bladder and is catheterized 4 times a day. In the last two weeks, she has started cathing herself. YEA!!<br><br>
Chann96 - Here is a tip to help your daughter in case she leaks or has an accident in public. We have our daughter wear a panty liner or maxipad. It doesn't bother her and nobody knows she has it on.
 

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<div style="margin:20px;margin-top:5px;">
<div class="smallfont" style="margin-bottom:2px;">Quote:</div>
<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">
<div>Originally Posted by <strong>trabil3</strong> <a href="/community/forum/post/8178459"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">My 6 year old daughter also has lipomyelomingeocele. She had spinal cord detethering when she was 3 months old. She does have a neurogenic bladder and is catheterized 4 times a day. In the last two weeks, she has started cathing herself. YEA!!<br><br>
Chann96 - Here is a tip to help your daughter in case she leaks or has an accident in public. We have our daughter wear a panty liner or maxipad. It doesn't bother her and nobody knows she has it on.</div>
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Congrats on your daughter cathing herself. That is a big step towards independence for her.<br><br>
Thank you for that great idea. We will give that a try.
 
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