I am writing this in desperation that someone out there knows what we are going through. My son was finally diagnosed with HMS after over a year of doctors telling us his incredible pain was behavioral or teething related. Finally an answer, and we thought things would get better. We are having a terrible time getting his pain under control. We started with naproxen once daily, it seemed to decrease but not much else. next we tried Mobic - no help at all! Back to naproxen (even though it gave him night terrors) but now twice a day at the highest dose possible for his weight. He is STILL having breakthrough pain and is too young for the kind of PT he needs but I have an evaluation apt set up anyway. I am at a loss. I held him last night after his meds as he whimpered and writhed in pain, drying "mommy my arms hurt (wrists)" over and over as he sobbed. I put little heat packs on him and he likes that. I just sat and held him and cried right along with him; its miserable!! Anyone out there with advise if your child was diagnosed this young and you can share your experiences of what helped and what didn't I would be so grateful! I feel so helpless!!
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Darkness falls even as the sun rises I don't feel numb I don't hurt I feel nothing at all and that's the scariest thing of all The darkness has crept to far in the darkness us taking me to the depths of despair I don't want to see Maybe later I will feel more like me or maybe I'll feel less than I do now
Hi All,Need some thoughts and prayers today. Going to have to face an unpleasant situation. Thanks.