Meet MacKenna - ROHHAD Association

This was taken in January of 2015 – she is 7 in this picture and currently weighs 119 lbs. MacKenna was underweight up to the age of 4 1/2. I first noticed a 10 lbs weight gain in three months with absolutely no change in her diet or exercise. Of course we were told to do a food log – I said no and took her to an endocrinologist and she was diagnosed with hypothyroidism. Although she has been on meds for it since then, she has just continued to gain steadily. Her behaviour is volatile with family members; however, in pubic she is very shy and will not usually act out. In the grand scheme of what ROHHAD can cause, she is doing very well; however, I live in fear of the proverbial “hammer” falling and losing my daughter. Of course,I could go on as every ROHHAD parent could, so I will end it with she is generally a happy kid, she loves Pugs and Huskies, Minecraft and watching documentaries (caught her watching one about the Iditarod the other day. She can also be very funny at times and I love her to here and back. Thanks so much for including us in this project and for putting this together. God bless.

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Auntie to a very special ROHHAD Boy.

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