My DD9 is hard of hearing...mild/moderate fluctating and progessive loss. As of yesterday, she now has THREE diagnoses: otosclerosis, a malformation of her temporal bone, and NOW autoimmune sensory neural hearing loss. She had surgery in December to remove a cholesteatoma, had two new eardrums built and tubes put in both ears. Her hearing went back to near normal....until February when it all crashed again. Her ENT sent us to a neuro otologist, did MRI, CAT scans and blood work for the AISNHL....obviously, there is a lot going on. He wants her to have an immediate consult with a pediatric rheumatologist and start a course of prednisone and/or methyltrexate.
Oh, and she is having tube set #6 on Monday! The ones placed in December have already fallen out and she is having pressure/fluid buildup already!
Do any of you have any experience with these? What were the side effects? It appears that there is only a 50/50 chance that the treatment would bring back hearing, and then possibly only with continued drug treatment. Given how close she is to puberty (she will be 10 in September), we are worried about effects on puberty.
Any advice, experience, etc. would be most appreciated! thanks!
Oh, and she is having tube set #6 on Monday! The ones placed in December have already fallen out and she is having pressure/fluid buildup already!
Do any of you have any experience with these? What were the side effects? It appears that there is only a 50/50 chance that the treatment would bring back hearing, and then possibly only with continued drug treatment. Given how close she is to puberty (she will be 10 in September), we are worried about effects on puberty.
Any advice, experience, etc. would be most appreciated! thanks!