Pediatrics Mailing List

Discussion in 'Mailing Lists' started by Sasha, Nov 18, 2003.

  1. Sasha

    Sasha Administrator Staff Member

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    Post in answer to this thread if your child was born with or has developed a Pilonidal cyst or dimple. This is specifically so that parents can contact other parents and help each other. By posting here, you are letting other parents know that you are open to discussing the problems that you both share. This list will grow over time as more people post. When you post, please put in the details: gender of the child, age, when you noticed the problem, where you are at in terms of medical care.

    NOTE: in order for others to contact you, you must either leave an email address or join the board. Otherwise, you won't get many responses.....

    Thanks for helping other parents out!!
     
  2. Anonymous

    Anonymous Guest

    My daughter turns four months old this upcoming thurs. and she has a Pilonidal sinus. We noticed it when she was about one month old and we are unsure if she was born with this or if it just developed after birth. My pediatrician offers no help. He says do nothing until something happens and he says that could be when she gets older. He only told me to keep the area clean.
    I am a new parent and this is my first child. I am having trouble accepting a problem that I can do nothing about--just wait and see what happens? This sounds so cruel. I would sure like some advise or help with what I can do to help my baby now before something bad happens. I am not even sure if I need to take her to a specialist and if so where do I start.
     
  3. Anonymous

    Anonymous Guest

    My 10 month old daughter was born with what I now believe must be a Pilonidal dimple. The ped noticed it immediately when she was born & they just said, "oh she has a butt dimple" and said NOTHING more about it. No explanation of what it might develop into at all. I just thought, OK, it's a dimple, no biggie.

    All we do now is keep the area clean. From what I've learned here, I'll have to talk to her about keeping it clean as she grows - especially when she reaches puberty and just let her know to be watchful for any possible swelling later on in life. I'm assuming that for at least some (hopefully MOST) people it never develops into anything.

    I'm really glad I found this site - I had no idea what it was! Thank you!
     
  4. Sara

    Sara New Member

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    i was born with a pilonidal cyst and so was my brother. i am now 24 yrs old (he is 27). i have never had any serious problems with it until about 2 weeks ago (first infection) - the infection had to be drained and i am healing very well. my brother's never had any problems to speak of either (his has never been infected). infections happen due to the "way the wind blows", or so it seems. my cyst however seems to have grown over the years and i am considering surgery right now. i do not know about surgery at an early age, but from what i've heard, the healing time takes a while. my two pence would be... wait until she is old enough to lay on her stomach for ~2 weeks - THEN have the surgery, during summer break or something. if i had known more about pilonidal cysts, i would have had the surgery when i was 12... i remember sitting in the surgeon's room with my mom and i would have told him i wanted it removed when he asked me for the final decision and back then, i said no out of ignorance.

    thought this might be useful to someone... feel free to contact me if you have questions.
     
  5. Anonymous

    Anonymous Guest

    My 4 month old daughter just had a lump, just below her "dimple" that I had recently discovered on my own. While I was bathing her, the cyst apparently had ruptured, there was a lot of pus and blood that leaked out, which horrified me! I rushed her to the pediatrician who, in turn, directed me to the nearby children's hospital. Consequently, the pediatric surgeon informed me that it was a pilonidal cyst, instructed me to keep gauze on the opening, give her hot soaks 2 times a day and she is on a course of antibiotics. We meet with the surgeon again this week.
     
  6. Anonymous

    Anonymous Guest

    My daughter is 7 months old and was born with a pilonidal dimple. At birth, her pediatrition also referred to it as a butt dimple and said not another word about it. My husband has a pilonidal cyst and underwent surgery when he was 18 years old. Unfortunately, the surgery was not successful, and it drains continuously still. I dread the day we have problems with our daughters and am desperate for any advice.
    Andrea
    Andrea.Ketchersid@electraisd.net
     
  7. Anonymous

    Anonymous Guest

    My son, who is now 22 months old, was born with what appears to be a pilonidal cyst. I am not quite sure if I am convinced that it really is a pilonidal cyst. I noticed a strange dimple in his bottom area right after birth. The doctors never mentioned it. At 20 months old, I finally questioned it. The doctor does not seem concerned with it. He says to wait until it gets worse. My son doesn't verbalize a lot, but he is always saying his butt hurts. I have a friend who had a pilonidal cyst and had the surgery. She insists that the cyst hurt quite a bit leading up to her surgery. Since my son cannot fully communicate his pain level, I wonder if I should take him to a specialist. Any opinions would be appreciated.
     
  8. Anonymous

    Anonymous Guest

    My duaghter was born with a pilonidal dimple with a pinhole opening. we were told not to worry about it. Never really thought about it again (too busy providing siblings) She is now 7 and just complained of pain above her cleft and Dr. said it was cyst. and recommended surgery consult and prescribed antibiotics.
     
  9. mammadonna

    mammadonna New Member

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    My 17 year old son had a "rectal abscess" incised and drained in August, then in October it "flared up" again and this time the surgeon called it a Pilonidal cyst afterall. I am concerned with his healing, and how to adequately care for it but most importantly prevent this from happening again. I am concerned when I see posts by people about multiple surgeries! I'd like this to be the last one!
     
  10. ajl1239

    ajl1239 New Member

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    The other day I visited the GP because of rectal bleeding. He said he saw a problem near my anus, but I also asked him if I had pilonidal because I was looking at this site the night before for the first time. Anyway, I bend over, and he goes, 'Oh yeah, you have pilonidal.' And then he said he didn't see a cyst or anything, but said that it was 'crusted over' (whatever that means?) and it was probably from birth with my spina cord not developing all of the way. If it helps, my dimple/sinus/whatever is not a circle, but looks more like this (imagine a grown adult male with hair, though!!): http://www.google.com/imgres?num=10...=177&start=0&ndsp=21&ved=1t:429,r:0,s:0,i:157

    Anyway, I'm just curious, because I'm going to a general surgeon -- and want to be informed -- and it sounds like a sacral dimple from birth 'may' be less likely to present problems later in life than a pilonidal that forms from hair, abscess, blah blah blah

    Thanks, Sasha, if you can shed some light! :)
     
  11. Catratmus

    Catratmus New Member

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    Hello! My daughter, 15 yrs old, developed a pilonidal a little over 2 weeks ago. It has been lanced and we have been trying to send it packing ever since. I am a big believer that knowledge is power and have been researching pilonidal cysts, lancing & removal, wound healing, etc. I am so happy that this forum and website exists.

    Have been only changing the packing once a day, but have been reading that I should change it twice a day. Also, am beginning to realize that this is something that will possibly be a lifetime challenge for my daughter; as if she doesn't have enough of those already (depression, anxiety, PTSD, New Daily Persistent Headache (NDPH) and epilepsy). Wondering if we should be looking for a surgeon since this will probably reoccur. Lots of questions, butt up to the challenge !!
     
  12. worried mama

    worried mama New Member

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    Hi! My son is 18 and has been dealing with this for several months. It is very frustrating!! We were told to wait it out, keep it clean, shaved, drained, take baths, take antibiotics, it isn't getting better. Now we are on the quest to find a good surgeon with experience doing cleft lifts but they seem to be few and far between. We are in Indianapolis so if anybody knows of someone, please let me know!!
     
  13. Catratmus

    Catratmus New Member

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    on pilonidal.org, there is a list of USA surgeons -- here is link:
    http://www.pilonidal.org/wp-content/uploads/2016/07/PiloMDs_USA_7_2016.pdf

    in misc. support forums/surgeon hall of fame, there are some ppl who have gone to docs in Ft. Wayne and Bloomington. you can read their posts here:

    http://www.pilonidal.org/xfforums/index.php?threads/indiana-surgeons.4850/

    hope this is helpful - we are new to this and will probably go to bloomington if surgery is need. not sure if theses surgeons mentioned for indiana do cleft lift or not
     
    worried mama found this helpful.
  14. worried mama

    worried mama New Member

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    I was able to find a posting about a Ronald Baughman at Community North in Indpls and I have requested an appt. The post said he does the cleft lift and sounded very positive about the results. I will post what I find out, thank you for all the suggestions. It is really good to know we aren't alone in this!
     
  15. Catratmus

    Catratmus New Member

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    Awesome about finding Baughman !! Will have to check him out myself, wonder if he does pit picking?

    Yes -- you are not alone!! Will look forward to hearing about Baughman and will keep peeps informed about our journey.

    Many Blessings !!!
     
  16. worried mama

    worried mama New Member

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    Hi, we got an appt with Dr Baughman in two weeks, he does do the cleft lift but dont know about pit picking, I will let you know how it goes. Thanks!!
     
  17. Catratmus

    Catratmus New Member

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    Prayers and blessings for your son's visit and would definitely want to know how it went and if he does pit picking. Is community north part of IU health?
     
  18. worried mama

    worried mama New Member

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    Thank you so much! I am pretty hopeful about the appt and I will ask about the pit picking. As far as I know, Community hospital is not a part of IU, they have several hospitals here in Indpls. Hope your daughter is feeling better!
     
  19. Catratmus

    Catratmus New Member

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    Checked out Community Hosp -- not IU -- but Baugham does take our insurance -- good to know :) Thank you for asking about Rebecca. We are 4 weeks into packing from her pilonidal being lanced. Just requested refill for the iodoform gauze and they are saying it should be healed by now HA HA HA !! Follow-up on this Wed. with doc and you bet I am going to be well prepared -- I wonder how many of these they have followed-up on to its completion. Would suspect they refer to someone else and never really have to deal with it again. Wondering if Riley has someone who does the Lift and the Picking. I am sure we will find out eventually. Take care and am glad to find someone to share this journey with. Will keep you posted.
     
  20. worried mama

    worried mama New Member

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    Glad to hear Dr Baughman takes your insurance! I dont really know much about Riley except for they are one of the best children's hospitals around. I bet somebody there does pit picking. It sounds like you've really got your hands full, hang in there!! It has to get better, just a long and frustrating road, I guess.
     

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