My daughter was diagnosed with EM last year by myself then her primary and then a rhuem. I have sooo many questions. I feel as far as with the doctors im running the show…as a google dr. Which is extremely unsetteling, she is in so much pain.
I don’t have advice, but give that little sweetie hugs.
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This must be very difficult. It’s bad enough to deal with as an adult. I can’t imagine how this must be hurting your heart to see your child in pain. I’m fairly new to this site, but have gained a lot of education/insight on EM by reading as much as I can. It’s a lot to take in and I’m just now re-reading some posts, which are making even more sense the second time around. My best advice is to educate yourself so you can advocate for your child as she is treated/medicated. Just this am I googled ‘personal cooling devices’ and was surprised to find so many things that are available to provide cooling relief. I sure hope your 4yo will find permanent relief from EM. God bless!
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It is so hard. Every night she falls asleep in my arms crying in pain. Last year we were doing motrin and OTC childrens meletonin and it was working just fine. (Her flare ups are ONLY in winter I dont understand) i thought we escaped it this year, we didnt. It all starts with her having a severe sensitivity to ALL articles of clothing I dont make her wear socks or underwear but its hard to get her in much of anything…this year the motrin and double dose of meletonin did nothing…she was then put on naproxen which also does nothing. She wont soak in cold water either idk what to do. She is getting into pain management at the childrens hospital hopefully on monday…Im just so scared to put her on some crazzy medication she doesnt need…
Bless her heart! Something that helps me that she may be willing to try (rather than soaking in cool water) is to roll her bare feet over aluminum cans that have been put in the refrigerator. These are cans that are not emptied of their contents. Just about any evening I can be found with a can of sliced peaches under one foot and a can of applesauce under the other😀. This gives that heavenly feeling my hot feet crave. Sometimes I do it for hours waiting for the flare to end. I pray it may help her as well.
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Hello,
I completely understand my daughter also has been diagnosed with EM only after I started becoming Doctor Google, and I agree it’s frustrating and scary as we believe the medical community should have been the one’s digging for the answers not us but unfortunately that was not my experience I had to advocate for my daughter because I’m the one who saw all her symptoms, pain and how it affected her quality of life. I learnt to take pictures and provide specific details and to push and question them. She has only started medications and she had some reactions but she is with the Children’s pain clinic and they are great so far. But some things she finds helpful in case you aren’t doing it yet (and this was pre-medication) was at night to completely turn her heat off, it’s freezing in her room but as soon as she did that she began to sleep better at night, she also uses ice packs the gel ones on her flares and that helps somewhat. In regards to medication those same things didn’t work for her and like you I was hesitant giving her medications that were stronger but then I thought about it she needs those medications she has a medical condition that is painful and effects her quality of life, and they help her. Keep doing what you are, you are the best advocate for your little one. Hugs to both of you, stay strong!
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