Discover Ehler’s Danlos Syndrome in Children

If you’ve never heard of Ehler’s Danlos Syndrome (and yes, Ehler’s Danlos Syndrome in children will be the focus of this article), you can get more background information in this other article on our site What is Ehler’s Danlos Syndrome and Why Should You Care We are experts on the subject of Ehler’s Danlos Syndrome here at StrengthX (and specifically Hypermobility Ehler’s Danlos Syndrome (hEDS) in children) because Dr. Mike grew up with this hypermobility joint syndrome, and didn’t know he had it until later in life. So, he’s on a mission to help people who find themselves afflicted with this rare connective tissue disease discover it early so they are more informed and better equipped to deal with the challenges that go along with it.

There are a range of signs of hEDS. Children with mild hEDS may simply be more flexible than their siblings or other children their age. This can actually be an advantage in sports and other activities. However, problems can arise when symptoms are more severe. And since hEDS is often not recognized for what it is, it’s important to know what to look for.

Here are some signs of Ehler’s Danlos Syndrome in Children:

  • As mentioned above, one of the most obvious indications your child has hEDS is that they will be extra flexible. This is especially noticeable in the hands, fingers, and toes.

  • If your child has loose joints that can easily dislocate, i.e., hips, knees, shoulders, and elbows) it’s a pretty good sign they may have some degree of this hypermobility joint syndrome. Jaw pain and dislocation are common, and they can lead to TMJ (temporomandibular joint disorder)

  • Dental crowding can occur in children with hEDS because of the presence of a high, narrow palate. They may also have frequent cavities, weak enamel, and/or gums that bleed easily.

  • Smooth, pale skin that is unusually stretchy and bruises easily.

  • Pain or weakness in the joints and muscles that intensifies in cold weather. In children with hEDS, this can seem like “growing pains” in the early years, but when it becomes chronic and more pervasive as they enter the teen years, it’s a good sign it could be hEDS. 

  • Wounds that take a long time to heal and/or create abnormal scarring patterns.

  • Experiences of dizziness, fainting, or “blacking out.” 

  • Gastrointestinal issues such as IBS (irritable bowel syndrome) 

  • Sleep issues

  • Headaches

  • Flat feet

  • Less common manifestations include delayed motor skills, small stature, and large eyes with a small chin and thin nose and lips.

If you think your child may have hEDS, it is crucial that you consult with a doctor who is knowledgeable about the illness, like Dr. Mike. This is because it is very often not recognized by professionals who are not familiar with it or experienced.

It’s also important to note that, even though hEDS is present from birth, symptoms may not become apparent until puberty, and they can also be mild until triggered by trauma.

If your child is exhibiting signs of hEDS, it’s important to take measures to keep them healthy so they can enjoy being young. Some ways to do this are:

  • You’ll hear complaints of pain (chronic pain that gets worse with age) so avoiding stressful and reaction-based sports will be key for your child (i.e. football and other “ball” sports, as well as super combative sports). 

  • Be aware that they may experience pain if they sit for long periods of time so light movement and making “play” more fun (without the “rough” aspect).

  • Be mindful of joints and ligaments, as well as activities that are more likely to cause injury. Swimming is more ideal than other activities as noted above.

And, of course, you can always schedule an appointment with us here at StrengthX if you’re in the U.S. in the Asheville, NC region.

Summary

The Hypermobile type of Ehler’s Danlos Syndrome is something we have first-hand experience with here at StrengthX. We recognize the importance of recognizing it early so you can take measures to diminish the negative effects where possible. 

There are quite a few ways to determine whether your child may be dealing with the signs of hEDS. If you believe your child may have it, getting knowledgeable about it is key and finding someone local that knows their stuff on this (find your “Dr. Mike” in your region).

Resources

  1. https://www.childrenshospital.org/conditions/ehlers-danlos-syndrome
  2. https://www.cincinnatichildrens.org/health/e/eds
  3. https://www.ehlers-danlos.org/what-is-eds/information-on-eds/children/