My son has HS, he is 11 years old. Are there any other parents with kids with HS on this forum?

Posted , 6 users are following.

HI, my son has been diagnosed with HS. he has been on 6 months of Doxycyclin and no improvement. next his Dermatologist wants him to try Rifampin and Clindamycin combo for 10 weeks. we havent started that treatment yet, we would like to try Tumeric or possibly a CBD salve. does anyone have any experience with children and HS? my sons case is quite severe.

thank you,

TERRA

0 likes, 6 replies

Report / Delete

6 Replies

  • Posted

    hi terra! ive had HS for about 7 years now (started when i was 16/17) and have tried everything including multiple surgeries. I felt compelled to answer because I tried doxycycline for almost 8 months with no improvement. the president of the HS foundation is my surgeon and he said that doxycycline is usually ineffective for the treatment of HS. Then I tried clindamycin and rifampin combo, and it worked wonders for me. The biggest side effect I noticed was really bad heartburn if i took it on an empty stomach or if you’ll tried to lay down right after you take it. I always took it about 20 minutes before I went to bed at least. It didnt cure my HS but it made all of my flares inactive. i havent tried tumeric yet but its on my list, as i am trying to avoid being on antibiotics forever. i know you can get it for a pretty affordable price at costco. i also bought CBD oil for 50 dollars and tried it topically as well as orally and noticed no difference, however, did more research only to discover the one i had purchased had hemp oil as a main ingredient instead of cannibis, which is where you see most results. going to be looking for a cannibis based one next! please let me know how the new meds work for your son. rifampin can also cause bodily fluids to be red/orange as a side effect (even tears when you cry, scary!) but i didnt have that side effect too much personally. best of luck and let me know if you have any other questions!

    Report / Delete Reply
  • Posted

    hi

    sorry to hear about your son , not a nice thing for anyone of any age.

    ive tried that combination of drugs , it worked well for a while but eventually everything came back , my dermatologist now has me on dapsone which is working well. i think sometimes you have to try and at least see before you know.

    hope this helps

    Report / Delete Reply
    • Posted

      it does help, thank you

      if we choose to go with the medication and it doesnt work the next step is HUMIRA. which im also not a fan of. so many diseases are trial and error is hard to know what to do

      Report / Delete Reply
    • Posted

      of course its always tough to make decisions where this is concerned , my dermatologist also gave me the next option of humira but tried the dapsone first which is very effective less leakage , bumps, smell etc i dont know whether this suits everyone but i totally trust my dermatologist and am hoping when i see her soon she will recommend me for surgery of some type .

      GOOD LUCK in your quest

      Report / Delete Reply
  • Posted

    I don't have a child with HS, but I have had it since I was 12. I’m 32 now and it’s under control. Drugs and creams were never the answer for me. It wasn’t until 2 years ago and I cut out all refined sugar from my diet that HS stopped completely. All the research I’ve done over the years points to a need for diet change. If medication isn’t working try eliminating foods to find out his trigger! I’m a huge advocate in people trying this method. I’m not the only one to cut out sugar, others have found success with wheat, others night shades. I spent far too many years battling this and it was just sugar that whole time!

    Report / Delete Reply
    • Posted

      we have been talking about eliminating foods. our son has Down Syndrome and he is also blind. meal time is already a struggle. gluten would be the easiest to remove first. i have a dairy allergy so it is a struggle for everyone! my poor husband! 😉

      its such a hard decision to make when it is bit your body. we are having a tough time choosing the meds because the list of side effects is so long. Nicholas cant express if he is in any pain or something is bothering him. he is extremely high functioning but 'why' is a very hard thing for him to grasp.

      but on the other hand he has been suffering for so long i have a hard time putting a bit of cream on one spot to see if it is going to work.

      how do you decide?!

      Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up