Baby Girl with a pilonidal Sinus

Discussion in 'Pilonidal Discussions' started by Celine, Jan 6, 2009.

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  1. Celine

    Celine New Member

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    Hi All

    Thank you all for the creation of this forum and all the precious information in it.

    My name is Celine and I am French. My daughter is 8 months, she was born with a little hole in the butt crack (hope I am using the right words), and she's been diagnosed with pilonidal sinus. She had an ultrasound done and the guy saw "something" in it, a cyst apparently.

    I was worried because I could not find anything related to babies on the internet, so I took an appointment to a good pediatrician doctor. Now I am even more scared. He wants to have a MRI done, to check if case she has tethered spinal cord syndrome (a mild case of spina bifida if I understand well). He said there was a chance in 1 million, but while surfing on the net I found out that tethered cord happened for 1 birth out of a thousand.

    The only thing that cheers me up a little bit is this part from this website:
    http://emedicine.medscape.com/article/979902-overview

    I believe my daughter's sinus is lower and the tract looks like its not directing towards the spinal cord. But who knows.... I am lost :(

    I am seriously worried and would like to hear about any advice that you can give.

    For example, are there any parents of babies on here? I browsed very quickly and did not find any. Have any of you been advised to have an RMI done for Spina bifida occulta diagnosis? How does it work?

    Any advice or cheer up will be welcome

    Thanks in advance

    Celine
     
  2. cricket1

    cricket1 Helpful

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    first of all welcome to this forum.wonderful site and wonderful support.

    secondly this is one of the saddest stories i have read on here and wish i had words of wisdom for you.i guess the best thing i can say is find a doctor u really like and trust and never let them push u into anything.the doctor isn't always right and this is your little baby.take an active roll in her care and if u must,get second and third opinions.

    i do know that most of us probably were born this way and if our mothers had checked in the first year of life they probably would have found holes too.so hopefully its not too much to worry about yet and make sure u educate yourself the best u can about all this for her future.

    i so wish u the best of luck and hope u get all the answers to all of your questions.
     
  3. Jaredsmom

    Jaredsmom Very Helpful

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    I agree ....

    I've read that alot of doctors think this is hereditary. It's safe to assume most of us were born with those little pits, which are indentations in the skin, and could even have had small holes, but our parents just never noticed or thought it was no big deal.

    Another point, even though this disease doesn't actually show up till most of us are in their teens or early 20's, another member had a daughter who was only 16, and when they did her surgery, they said her daughter's damage from the bacteria was extensive. At only 16? How can that be? Logically, I am thinking this disease must be active much earlier than any of us suspect.

    Let us know what your doctor says. We are all wishing for good news about your baby. PLEASE keep us updated.
     
  4. Sasha

    Sasha Administrator Staff Member

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    Celine - I hope you've found our Pediatrics page by now.

    http://www.pilonidal.org/knowledge_base/pediatrics.htm


    When occurring in a baby, these are usually referred to as Sacral Dimples and you'll find a wealth of much more reassuring information if you use that as a search term. It is normal for further testing to be done by a cautious doctor who wants to rule out for certain any involvement with the spinal cord.
     
  5. Celine

    Celine New Member

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    Thank You all for your messages.

    Sasha, this link you gave helps a lot! My daughter has exactly the same hole, at the very same place. For a split second, I thought it was a picture of her butt :).

    I know now that I should look up the term "Sacral Dimples". I already searched a little bit and theres much more info. I will carry on looking and Ill keep you all updated.

    Thank you all for your support, and don't hesitate to reply if you have further information.

    Celine
     
  6. louiseh57

    louiseh57 New Member

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    Hi Celine just wanted to say i'm so sorry you and your daughter are going through this.

    Sacral dimples are quite common, it seems to be the start of spina bifida in the foetus, but it somehow corrects itself, and then when the child is born at some time in their life it could turn into a pilonidal.

    2 of my cousins have these and have had no problems so far, but my aunty will keep an eye on them.

    I'm not sure if I ever had one but my mum can't remember seeing one when I was younger.

    I hope everything turns out well for you and your baby :)
     
  7. Celine

    Celine New Member

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    Hi

    I am coming to give an update.

    We decided to see 2 pediatrician doctors to have 2 points of view:1st one is the one I was talking about above, and the second one advised us to go to an hospital where a neurosurgeon told us there was no risks whatsoever that the sinus could lead to a tethered cord syndrome, because it is too low and blind. Indeed, if you spread the buttocks very well, it looks like you can see the end of that hole. Thats the good news. The surgeon wants to close the hole, for hygienic reasons, and to avoid that the sinus gets infected later on in life. He said it was a small procedure etc, but just thinking of my baby girl going through surgery, blood tests, intra veins injections, anesthesia and pain, totally scares me. Besides, I realized after the appointment that I am not even sure that the surgeon is aware that there a cyst behind the sinus. I showed him the ultrasounds and he says he didn't understand them!!!??
    Also I understand that she's smaller than an adult so the wound should be smaller too, but how is the wound going to heal? He said that he would use kind of resorbable stitches, but when I read on forums, the wounds needs to heal from the inside to the outside? How can it be then?
    I need to go and see him again to discuss that. Also I read on another forum that "Surgery is NEVER indicated until the first flareup. The complication of the embryological problem MUST be prevented."... What do you think?

    Sasha - By the way, no one here in France seems to make any difference between a pilonidal sinus and a sacral dimple. It's a shame because I read on lots of forums that many babies are born with a sacral dimple (just as Louise was saying), and are completely healthy and do not need any kind of treatment. I guess that's what I would like to get as an answer.... :-(

    My husband and I are worried. Surgery is scheduled next week but we strongly think about postponing until we get all the answers we need.

    As always, thanks for your advice and support

    Celine

    PS: Sorry for my English...
     
  8. Celine

    Celine New Member

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    Hi Sasha

    I just found out that in France, Doctors refer to "fossette sacro coccygienne" for sacral dimple. I hope I will find more information now.

    Celine
     
  9. tinkerbell34

    tinkerbell34 New Member

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    My doctor told me that I was probally born with my pc,my mother remebers me having a deep dimple when I was born,that combined with the fact that I have alot of hair is most likely why I have this problem.My 2nd flare up was when I had my 2nd son,and when I found out the name of what I had.I noticed that my son had a very deep dimple(he was about 7 months) and was afraid that he would have this problem.They did a MRI and his pediaditrion said that he thought all was okay,that was 13yrs ago.Now my surgeon tells me that this is gentic and that my 13ysr old son( he also has alot of hair) will most likely have this problem and that it would not hurt him to start shaveing his behind to help lessen the risk of him haveing to many problems with a pc.( boy that did not go over well with him!!)I hope some of this helps.I do remeber how scared I was when I first saw the dimple when he was young ,and even now thinking that he may have this problem too.(both my kids had seizure disorders when they real little),so I now how heart breaking it is to not be able to do much.But they are right arm yourself with as much knowledge as you can it helps when you have questions and want to understand what the doctors are telling you.I really wish that I had the internet when my kids were little I spent alot of time reading books at the libary and still don't understand what half of them said.Sorry this is so long but I wanted to let you know there are people who do understand what you are going through and we are here to talk if you have the need.[o+o]
     
  10. karen

    karen New Member

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    Celine, this must be such a worrying and difficult time for you.[o+o]

    My baby boy (who has just turned 1) was born with a sacral dimple and was referred to a paedeatrician when he was tiny. As in your little girl, the dimple was blind and not tethered to his spine. As I have recently had an op for a pilonidal sinus I asked whether there could be a connection here, and was advised that there wasn't. From my fairly extensive reading on the net though, I have found that sacral dimples can sometimes lead to ps as they can be difficult to keep clean.

    I have also read that sacral dimples often become much more shallow as a child grows, and already in my little boy I can see that it is becoming less defined. Surgery is a huge step and this is a very difficult decision for you to make. Good luck with it all.

    Your English is excellent by the way!!
     
  11. Celine

    Celine New Member

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    Hi All

    Thank you for your replies! (and for the compliment! :eek:)

    ...So ...we decided to cancel the surgery. We went to see another pediatrician, who's also a surgeon. When I said the other surgeon wanted to close the dimple, he raised his eyebrows. He was surprised and disagreed. He said that it was best to leave open because:
    1. an infection might occur and lead to an abscess, now.
    2. Later on, this "tunnel" will help to drain the possible dirt from the inside. He said that many adults with pilonidal abscesses did NOT have a sinus that was going all the way to the butt crack.

    Can anybody confirm this?

    As far as the MRI is concerned, in order to see if she might have tethered chord syndrome, he said that we could wait, and that he's sure she is fine because she has absolutely no symptoms, her development is perfect. He's never seen a single case of spina bifida occulta in 27 years, although he sees LOTS of sacral simples in this area of the crack.

    We think we are going to wait, but still keep an eye on all this...

    If you have any comments, warning or anything to say, we'll be happy to read them.

    Celine
     
  12. Celine

    Celine New Member

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    Thank you so much for your reply.

    I can imagine how you felt when you found out about the dimple on your son... How did they perform this MRI by the way? How old was your son then? 7 months?

    I am also going to teach my daughter to keep the area as clean as possible... I hope none of our kids will get one of those abscesses:(

    fingers crossed! [o+o]

    Celine
     
  13. Celine

    Celine New Member

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    Hi Karen and thank you.

    I noticed that my daughter's dimple was indeed getting shallower. I hope its good news.

    As I was saying earlier, I think the only thing we can do to help our little ones is to teach them to keep the area as clean as possible... I am pretty sure like you that there's a risk, but on the net, they say that it rarely happens... I hope it's true... only the future will tell.
     
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