HEDS in infant age and ongoing

champagnend · 08-29-2011

I am a mama of 4 and two of my children were diagnosed with joint issues as infants. My oldest is turning 6 and was diagnosed with HEDS about 3 years ago. I personally haven't been diagnosed but two genetics doctors have said there is a high chance I may have HEDS too. I deal with myself but my questions are if there is anyone else out there that has seen effects of HEDS in infant/toddler children. My youngest is 1 and has been having issues since birth. Joint pain and stiffness hasn't been a problem for the kids yet but I have been told that is soon to come for my oldest. Am I the only parent out there dealing with this? Is it worth it to see Dr. Tinkle with my oldest? Should I be checked out too?

xxBrittany · 09-21-2011

I would definitely say for you to get checked out as well as your children. The way I look at it, it is better to be safe than sorry!

Also, when I was little my mom said she had so much trouble with me complaining that my knees hurt and screaming saying they were "popping out" but she thought that it was just growing pains.

What would seeing Dr.Tinkle make you lose? I'd say go for it, and let us know how it goes! You'll be in my thoughts and prayers!

SophieeBabessxo · 04-02-2012

I had HEDS from a very young age, and it caused me to delay in walking unaided til I was 6 years old. Before then I had a zimoframe on wheels which helped me walk around. I also had a standing frame when I was younger. The doctors had no idea what was wrong with me until 2009 (14 years old) when I was diagnosed.
Hope I have helped you out