Looking for help

Discussion in 'Pilonidal Discussions' started by baja4ever, Jan 18, 2016.

  1. baja4ever

    baja4ever New Member

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    Hi all. I'm new here and I'm hoping someone can relate to my story, or should I say my daughters story. I have a 12 year old daughter that has been dealing with a pilonidal cyst since May of 2014. When it was first found, the doctors misdiagnosed this as a MRSA outbreak as when she was younger (between 1-3 years old) she has 3 outbreaks of MRSA. She had been complaining of lower back pain for about a week and after a trip to the ER and xrays and chiropractice treatments she got no relief. On May 26th, 2014 she came to me after taking a shower wanting me to look at something. There was a hole, right in the crease at the top of her "cheeks". We went to the ER and because of her history, they assumed it was MRSA. They told us to follow up with her primary, who sent us to All Childrens hospital. They performed a debrievement (not sure of the spelling) where they cleaned the hole out, removed ingrown hairs and instructed me to pack it twice a day and keep the area clean of hair. We were told that it would take months for the hole to heal and as long as we saw progress to keep packing. Fast forward to about a year later. The hole was smaller about the size of a dime but not closed. So we go back to All Childrens. They do another debrievement and tell me to again keep packing. After almost 2 months there was no improvement so we went back again. I asked if there was any other treatment as she would be starting school in August and we needed to get a handle on this. They performed a procedure where they cut her from the top of her cheeks to about a half an inch above her anus and cleaned it out and stitched it back up. It seemed to be healing until we went back for her 2 week follow up. At that time we found that the desolvable stitches at the bottom of the incision had desolved to soon and now she had a surgical wound about 2 inches long and more than an inch deep. They wanted to let it heal on its own. She had just started 6th grade at a new school and letting it heal on its own would be even longer time out of school. They ended up putting a wound vac on it and spent 3 days in the hospital to make sure it would work. She had to be on the wound vac for just over 3 weeks and as a result had to be put on medical homebound schooling and missed the entire first quarter of going to school. She jut went back to school this past November. I kept packing it with aquacel twice a day, as well as shaving or using Nair on her behind. The wound completely closed just before Christmas. We were thrilled!!! Until a week ago yesterday. I used nair on her to remove the hair. The next night she told me it was hurting, so I checked it and the hole is back!!!!! And its growing!!! It was about the width of my pinky on Monday, by the time we got into the doctor this past Friday it was the width of my thumb. That brings us to today. They want to pull her out of school again and tell me to pack it twice a day and give her a Dakin bath twice a day. They tell me we are at the very beginning of this. I just cant accept that. There has to be SOMETHING they can do so that my daughter can have a normal life. That's what brings me to this forum. I am hoping someone has some advice about some kind of treatment that can help my daughter. I know this is long and if you are still reading this..thank you. Any help is greatly appreciated.
     
  2. Tonster

    Tonster Very Helpful

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    It's supposed to heal! How unlucky, poor thing being only 12.
    When they do the repeated debridements they might be removing bad tissue to encourage healing. Silver Nitrate can also be used but hurts like anything.
    Is it an infection that's opened it up again or just the surgical wound lost it's integrity. Those wounds can open up years later even ... I'm not sure how related it is to being rough. I was certainly warned to keep all weight and pressure off it... and if there's any chance your daughter might be jumping around and onto chairs and in the playground... ie) no pain or open wound doesn't mean she's good to go again.

    I hope someone has some advice... but really sounds like you need to continue investing effort in getting this healed now. Not sure if a young one can qualify for a Cleft-lift for preventative reasons
     
  3. S2015

    S2015 New Member

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    I am so sorry to hear this !!! It is hard enough already for adults to have to go through this!!! Poor Baby!!! I am praying that you guys or a doctor out there find some answer to resolve your daughter's situation and just wishing her the very best!!! By the way, is she being seen by a Colorectal Doctor/Surgeon? If not, it might be something to look into.
     
  4. baja4ever

    baja4ever New Member

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    She is currently being seen by the wound care specialists at All Childrens Hospital. They seem to favor going the very conservative route, I will look into getting another opinion by a Colorectal doctor. I'm new to this so I don't know what that is but I can do some research. Packing twice a day with silver nitrate now and it's extremely painful for her. It's killing me to have to do this to her. Thanks for the suggestion.
     
  5. baja4ever

    baja4ever New Member

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    Silver nitrate is what we are using to pack it now. Aquacel is just he name brand. She has to get through this week at school for midterm exams and then she will be going into medical homebound schooling so that she can stay in bed on her stomach as much as possible. Thanks
     
  6. LILLY

    LILLY Very Helpful

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    Is it causing her pain to go and sit through her classes or do they want her home just to keep pressure off the wound?
     
  7. baja4ever

    baja4ever New Member

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    Yes it is very painful. She cries everyday at school because of the pain she's in. She takes 325mg of Naproxin before she leaves and then has to take another 600mg of ibuprofen while at school and it still doesn't help.
     
  8. LILLY

    LILLY Very Helpful

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    Your daughter's story is similar to so many others here. I think you need to seek out another opinion preferably from a cleft lift surgeon. Does your current surgeon feel there is an infection and is she on antibiotics?
     
  9. baja4ever

    baja4ever New Member

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    No infection that they have mentioned and no antibiotics. I was contacted by a doctor on here explaining the cleft lift... I'm going to look into it.
     
  10. momofthree

    momofthree New Member

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    My son has a story similar to your daughter's. He was 14 when it started. His started as a "hole" at the top of his butt cheek. It leaked fluid everyday and the doctor also diagnosed it as a staph infection at first. two months later we went to a surgeon and they did a debreidement surgery where he had a very long cut and stitches and a drain tube. After the stitches were removed we were in the same situation as before the surgery. Went to see another surgeon who removed the "cyst" and stitched it up. (sounds like his incision was as long as your daughter's). Everything seemed to heal well until I realized there was a small part of the incision close to the anus that had not closed and started leaking fluid again. The surgeon decided to do another surgery(because there were some new "nests of hair" in the closed wound because it had not healed properly) and leave the wound open to heal from the inside out. We packed the nearly 6 inch long and 2 inch deep wound twice a day for about 8 weeks and it took about 6 months to totally heal but I am happy to report it healed completely about 7 months ago. He was finally able to get back to being a teenager again after almost two years of misery. Good luck to you. I think the key is finding the right doctor - at least that was it for us.
     
  11. LILLY

    LILLY Very Helpful

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    Baja I'm glad to hear you are checking into cleft lift. You and your daughter have been through so much already I would hate to see it drag on and on for you. It's unfortunate that pilo sufferers (and their parents) have to fight so hard for good care. It really is unacceptable to be told to take her out of school and have her lay on her stomach indefinitely. I hope you get some answers soon. Keep in touch.
     
  12. baja4ever

    baja4ever New Member

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    I added another discussion, please check it out, thanks
     

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