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16 yr old daughter with HS

Posted , 4 users are following.

penny86
penny86

My daughter has had consistent drainage, inflammation and break through of granulated tissue under both arms for about a yr. She is 16 yrs old and Dr usually treats with Silver Nitrate. However it only clears tissue then it repeats all over. Its is very painful and we are contemplating whether to have them cut out using some type of flapping procedure as well. Has anyone had this procedure? If so is it out patient or require hospital stay. Does the surgery work?

0 likes, 13 replies

13 Replies

  • anne21112
    anne21112 penny86

    Posted

    Hi, I suffered with this in my early teens and eventually had the surgery when I was 32 . I'm personally glad I had the surgery as in my case it was a success. I was in hospital for 4-5 days but only because the stitches ruptured on one of my arms. I then had to attend daily for outpatient treatment for about 2-3 weeks. I'm 59 now and still suffer with HS but it has calmed down a lot since the menopause. The procedures today are no doubt far more advanced. This is a horrible disease and so painful. I hope this helps and whatever you all decide is a success. Good Luck!!
    • penny86
      penny86 anne21112

      Posted

      Thank you Anne I'm grasping for all aspects of the disorder and hopefully will be able to make the right decision.
  • Scott1986
    Scott1986 penny86

    Posted

    Hi Penny. I'm sorry to hear you daughter is going through such pain and discomfort with HS. I've not heard of HS being solely treated with silver nitrate. Has she been on any other medication for it? Eg. Antibiotics? Every antibiotic I have been on has had little to no effect. Until recently to which has been miracle for me as I have not had a flare up since. I have been on a 12 weeks course of clindamycin and rifampacin combination. I shower twice a day, morning before work and after work and use hibiscrub which is an antimicrobial wash that surgeons use before surgery. I also apply clindamycin gel to the affected areas (for me, groin and top of bum crack) only ONCE per day (morning). The gel does take a while to start working, probably several weeks. But if she's on clindamycin and rifampacin tablets for 12 weeks whilst constantly using the clindamycin gel routine, in that time it will have started working so she can stop the tablets and carry on using the gel as a preventative measure. Please let me know how you get on and if this is a possibility and has been of any help to your daughter. As more people read these threads it might help more people. Thanks for your post.
    • penny86
      penny86 Scott1986

      Posted

      Thanks for the info Scott. She has only been in Bactrim antibiotic. But I will certainly follow your course with her Dr. I want to try everything before opting for surgery.
    • Scott1986
      Scott1986 penny86

      Posted

      Like I say, I've been in every antibiotic available and they had no effect. Clindamycin and rifampacin combination is a powerful anti inflammatory. (rifampacin is typically used to treat TB and leprosy amongst other things, as you can tell they treat horrible diseases and work well with HS). It's only a twelve week course and can put people into remission for an unknown amount of time. I am now in remission (I hope) 2months and counting. That to me feels like a life time after the suffering week after week I have been through. Not having to worry and it constantly being on mind and in pain is a blessing. Now approaching summer, obviously HS is at its worst but I'm optimistic I can be in work most of this summer rather than in pain and depressed and bed ridden. I have also just applied for funding from the NHS for laser hair removal in my groin and the top of my bum crack to treat a pilondial cyst. This is also an option I think you may benefit from enquiring from. It is expensive but I feel it will be beneficial for things progressing further. You have to be clean of a flare up to have this though, and certainly not on any medication cos of the high risk of burning. The things is with the Clindamycin and rifampacin combo, you can only use it for 12 weeks at a time due to the fact it can have lasting damage. I am now obviously on a break from this treatment but am safe in the knowledge that I can go back on these tablets again after a short break if I flare up again. I know for a fact these tablets are relatively cheap as I have done research (obviously if you have no NHS and your in America I'm not sure). I will keep this thread updated on the coming months about how I get on with laser treatment and if it's beneficial to me. Please don't only ask about the Clindamycin and rifampacin tablets, be sure to ask or buy yourselves through the Internet hibiscrub antimicrobial wash. Also don't forget the Clindamycin Gel, I have tried the Clindamycin lotion in my groin and it gave me a bad rash (skin reaction). The gel is much better in my opinion both for applying and having no reactions too. You only need a small amount once a day. Make sure you use this as well as the Clindamycin and rifampacin tablets and also after competing the course of tablets as it is definitely a preventative measure for recuring HS flare ups. I think it's purpose is to unlock hair follicles and it's antibacterial properties as well. Please keep this thread updated to let me know how you get on as I'm very interested. Thanks for your reply and sorry to repeat myself as well, I just need to get it out there. It has helped me no end and want others to have a bit of relief even if only for a short while.. Who knows with HS? Ha. Hope this helps your daughter and I wish her and you well. Doctors cannot prescribe Clindamycin and rifampacin tablets (at least in the UK) it's done under close monitoring from a dermatologist at the hospital (for blood tests before and after). Don't worry about the side effects if you read or research about any, sweat does not turn red, urine turns slightly red only for the first wee after taking the tablets. More amusing than scary in my opinion ha. Apart from that I have had no other side effects other than the comical value ones. Keeps us adapted. Thanks. Scott
    • Scott1986
      Scott1986 penny86

      Posted

      Hi penny. I was wondering how your daughter is getting on and if you have followed up on asking about treatment. Hope your both well.
    • penny86
      penny86 Scott1986

      Posted

      Hi Scott, last week she had a silver nitrate treatment for the wound and it closes but the same area inflamed and the tissue has come through again. The dr was to cut out the local area. She gave her another round of bactrim I am finding that I need to be more presistent because I the dr are not open to ideal yet they don't have an ideal what to do either. We go back on Tuesday. I will insist to try a round of clindamycin before consenting to surgery.
    • Scott1986
      Scott1986 penny86

      Posted

      I can't believe the doctors are simply treating with silver nitrate to help the wound and bactrim antibiotics. Bactrim is to treat staphylococcus infection as well. Not HS. It has upset me that this is the treatment you are receiving. Definitely insist and don't take no for an answer on both the clindamycin and rifampacin combination! Google them and see for yourself that these are powerful inflammatory tablets taken together. If not then maybe it's worth getting a second opinion and finding someone else and see what they say. It is definitely worth a try before surgery as things may calm down so she isn't in so much pain. Please let me know how you get on. Wish you both well. I'll send a link from patient.info from a dermatologist here in the UK from Wales and you can see what he says. [url=patient.info/forums/discuss/rifampicin-and-clindamycin-24375?page=0#1244570hope]patient.info/forums/discuss/rifampicin-and-clindamycin-24375?page=0#1244570hope[/url] the link works. If not let me know. Cheers.
    • Scott1986
      Scott1986

      Posted

      It may not work for some people but it certainly worked for me and it's definitely worth a shot before surgery. If she had to have surgery after, you have not lost anything from trying other options available.
    • penny86
      penny86 Scott1986

      Posted

      Yes that is true! I will google it as well. I'm am going to insist that we try the combination especially since nothing she suggest is workin. If not I am considering going to another dr as well.
    • Scott1986
      Scott1986 penny86

      Posted

      The dermatologist in the link says he even gives talks to doctors cos they don't know about the treatment. Luckily my dermatologist did. They also mentioned TNF inhibitors but sadly they don't have the funding and I'm not a severe enough case to be considered as the TNF inhibitors cost£13,000 a year per person to treat. Plus they have serious side effects so they may outweigh the good in my case. The dermo in the link says the clindamycin and rifampicin are cheap even privately as well. Worth a shot. Fingers crossed you get somewhere. Good luck.
  • katelynn97
    katelynn97 penny86

    Posted

    Hey Penny! I have had HS since 2012 and I'm currently 17! Yikes I was young! But if your daughter ever wants someone her age to talk to- I'm here! I know the pain and with boys and dating, it's emotionally draining for everyone! I've gone from treatment to treatment and I'm slowly getting better! But it can be hard being a teen without someone who knows who isn't older than you! So I'm here- which is probably scary from a mom stand point, considering you don't know me! But I swear I won't do anything but be there as a friend and someone is going through it too!
    • penny86
      penny86 katelynn97

      Posted

      Thanks Katelynn how sweet of u and yes it would be nice to connect and share with my daughter. As a mom my guard is always up for predators however I can't imagine anyone with this condition being one as it is difficult and painful enough.

      How long have u been diagnosed? My daughter has only had localized outbreaks in the armpits. Being extremely painful during the summer months but outbreaks all year long

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