ktdommer Posted June 11, 2014 Report Share Posted June 11, 2014 My 19 year old son with PANS, Lyme, babs and bart decided to go swimming in filthy Lake Eerie water on Sunday. Got a first degree burn but the pain is at a level 10. I met him at the ER last night and he was crying, moaning and thrashing with back pain from his sunburn. Psych was called in and after an evaluation she said there was nothing she could do. Docs thought he was on drugs so I said to give him a tox screen which they didn't. He appeared crazy. They tried xanax didn't help, motrin didn't help then a big shot of haladol helped after an hour. He literally cried for 2 hours and started to hyperventilate. He was dismissed with advice to try Noxema. He slept 14 hours and woke up with pain level of an 8. Tried all sorts of remedies on sunburn on back. Finally knocked him out with his pain and sleep meds. It is so hard to be around and I feel for him. What is going on? Is this a psych issue? It is pain that is shooting and stabbing not a crawling sensation. Wish our Lyme/PANS doc wasn't 2.5 hours away. I tried googling babesia and sunburn just wondering if something could get stirred up with a sunburn. Any thoughts are appreciated. Link to comment Share on other sites More sharing options...
msegal7 Posted June 11, 2014 Report Share Posted June 11, 2014 Is your son on Doxycyline? My son had a very similair and disturbing reaction to a burn on his finger and toe nails while on Doxy. Link to comment Share on other sites More sharing options...
ktdommer Posted June 11, 2014 Author Report Share Posted June 11, 2014 My son took himself off all meds when he moved out May 22nd. Partly due to forgetting and partly due to the fact that he says he feels better off of them. No doxy and I would think that plaquenil, enhansa, ceftin, zith and tindimax would all be out of his system. Disturbing is a great word to describe what is going on. I will never forget the looks of the people in the ER last night. Link to comment Share on other sites More sharing options...
SSS Posted June 11, 2014 Report Share Posted June 11, 2014 Oh no, I'm so sorry. My first thought was also Doxy burn because they're like no other, but then see he is off of everything, and out on his own. This is the fear- anxiety or anger spikes, the immune system/ inflammation run up with no modulation, can't handle it. Maybe when he wakes up again/ calms, this will be the lesson that he needs to remain on some sort of medication/ treatment? Because I don't think it was the actual pain of a sunburn (and sounds like ER thought the same thing.) Link to comment Share on other sites More sharing options...
beeskneesmommy Posted June 11, 2014 Report Share Posted June 11, 2014 (edited) I don't want to freak you out, but I would be concerned about some sort of parasite or bacteria in the water that got into him. I am surprised that the docs did not consider that if Lake Erie is that icky. I got a parasite while swimming in the Harkness Sound, CT., years ago. It persisted in extremely painful ear infections that lasted for years. If this persists, i would take him to an ID doc. If it is truly the sunburn, it certainly can be painful but that level persisting for over 48 hours seems pretty unusual...I am so sorry that you and he are going thru this Edited June 11, 2014 by beeskneesmommy Link to comment Share on other sites More sharing options...
4Nikki Posted June 11, 2014 Report Share Posted June 11, 2014 This stuff works wonders on burns. Just like burn ointment but also takes out pain. http://www.ihealthtree.com/dmso-cream--rose-scented-2oz.html If you get some, be carefull to use it lightly because its strong and not fda approved. The dmso penetrates the skin bringing the aloe vera with it. Link to comment Share on other sites More sharing options...
smartyjones Posted June 11, 2014 Report Share Posted June 11, 2014 ds last exacerbation (KNOCK ON WOOD - I am always nervous to say that) was 2 years ago and I believe due to an allergic reaction to sunscreen. I have known he has had sensitivities to sunscreen -- this one did not have the major ingredient that is troublesome in it and I thought was okay. he used it one day - the next day he had some redness on his arms and face. he'd been in the sun all day and I stupidly thought I just hadn't been vigilant enough with it. so - I put it on him for day 2. that night, he had more redness and slight bumpiness. *#$% - I realized it was the sunscreen itself that was causing the trouble! this tipped off an exacerbation. luckily - it was fairly mild. (or perhaps, I have just forgotten.) it lasted about 6 weeks. I think it was engagement of the immune system in an allergic reaction that got it rolling. did he use any sunscreen products that could have caused an allergic reaction? I can't really remember - I think I thought about Benadryl but don't remember using it. has he had experience with Benadryl? perhaps something to try -- ??? good luck. Link to comment Share on other sites More sharing options...
ktdommer Posted June 13, 2014 Author Report Share Posted June 13, 2014 Thanks everyone for their posts. Thought he was better so drove him to his house. He called tonight and vomited and has diarrhea. Feels bad and pain in back has escalated back up a bit. Was a level 10 in ER, 8 the next morn and a 4 this afternoon. He has slept so much. Now I'm getting worried it is much more than a sunburn. I think it is triggering more psych stuff. Will call Lyme/ PANS doc in AM. Link to comment Share on other sites More sharing options...
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