How To Help The Double-Jointed Child

A while ago a mother came to see me at our development centre, very worried about her three-year-old child. She told me that she had already seen a urologist, paediatrician and an occupational therapist, and they all seemed to have thought that her child was just fine. Nonetheless, she had a nagging feeling that this was not the case.

At first, I thought that this mother was just a bit paranoid about her child's development seeing that I was the fourth professional that they were consulting. However, the teacher at preschool was also worried about the little girl being clumsy and I have learned over the years to listen to a mother's instinct. Thus, I made sure to pay attention when this mother started talking.

As we went through their medical history form, my eye caught the following words: "severe constipation, continuous bladder problems, bruises easily, battles to sleep through the night, complains of pain and tummy aches, very clumsy".

I sat upright in my chair as mom gave me more detail about her own development as a child. It sounded like a cookie-cutter pattern - what mommy had been struggling with for years seemed to have bothered her child as well. The clues slowly started to line up. Could this be genetic? Could this child have something that has been overlooked for the past three years?

I had to find out more. I took the little girl by her hand (which immediately gave me another clue) and started to play various gross motor 'games' as part of our formal assessment.

I quickly noticed that this child was indeed very clumsy. Although she could perform all the skills that I was busy testing, it was her way of execution that finally gave me a clue of what this family may have been dealing with for years. Holding her hands out to catch a ball, I noticed that her arms made an "X" when she lifted her arms in front of her, her elbows coming very close to one another.

I walked up to her and had a proper look at the range of all her movements. Indeed, this child was extremely flexible. She reminded me in that sense of my youngest child. Her skin, full of bruises, had a velvety texture and it stretched further than normal.

Although flexibility in itself is not always a bad thing, it was all the other symptoms that were present with her extreme flexibility that made me suggest that she sees a paediatric rheumatologist.

To cut a long story short: this little girl was diagnosed with Ehlers Danlos Syndrome and immediately thereafter started with physiotherapy at a practice that specialized in hypermobility.

What is hypermobility?

Hypermobility is just a fancy word for describing how flexible someone is. Some people may refer to it in layman's terms as being 'double-jointed'.

Joint hypermobility is widespread in the general population, and many people who have it don't have any major problems. Hypermobility can be advantageous in a variety of circumstances. For example, Michael Phelps and Cheryl Cole are examples of highly flexible persons who have achieved success in their sporting careers.

Hypermobility is also quite common in children as they possess an inherently greater range of motion in their joints than adults. According to the Hypermobility Syndrome Association, between 10 - 50 % of all children are hypermobile, with girls being more flexible than boys.

Most of these children do not experience any symptoms but rather see themselves as having "superpowers" like Elasti-Girl in the movie "The Incredibles". Their bodies allow them to do crazy stunts like putting their feet behind their necks. Flexibility can also be an advantage in activities and sports such as athletics, dancing and gymnastics.

However, sometimes being hypermobile or bendy can cause problems or ‘symptoms’. This is what the word ‘syndrome’ means. Syndrome means ‘other symptoms’. In the past, children with mild symptoms were often diagnosed with Joint Hypermobility Syndrome.

That being said, since March 2017 this terminology has been changed internationally to Hypermobility Spectrum Disorder. Some hypermobile children may go on to be diagnosed with more serious disorders such as Ehlers-Danlos syndrome or Marfan syndrome. Joint hypermobility can also be seen in children with Down Syndrome.

What causes hypermobility?

Low muscle tone may allow more movement in the joints. The shape of your bones may also play a role in hypermobility as shallow sockets allow for a greater range of movement. This in turn can lead to dislocations.

Although this is likely to affect only one of the joints in your body, it isn't a common cause of hypermobility. "Loose" ligaments, on the other side, is likely to cause hypermobility in many joints of your body.

Ligaments are made up of several types of protein fiber including elastin (which gives stretchiness) and collagen (which gives strength). Think of them as stretchy Elasti-Girl and her strong husband Collagen. Together they need to work in harmony to make the 'relationship' successful.

Small changes in the chemical processes of one's body can result in weakened collagen fibers and more elasticity in the ligaments (that help to hold the joints together). This causes people to be super flexible.

Evidence exists that hypermobility caused by abnormal collagen can be inherited. If one parent thus has this type of hypermobility, then half of their children are likely to also inherit it, though members from the same family may not be affected the same.

Signs and symptoms of hypermobility that warrant attention

Children with hypermobility may complain about pain in their joints or muscles. They also tend to fidget a lot and generally tire very easily. Growing pains, especially at night, are also often associated with hypermobile children.

Remember, most of the time these children have joints and muscles that are too ‘loose’. Thus, they need to put in extra effort to do the same things as everyone else. These symptoms may start suddenly after the child had an accident, had been ill, had a big growth spurt or if the child did not exercise enough.

Hypermobile children are furthermore prone to sprains, soft tissue injuries and dislocations of their affected joints. Some complain of stomach aches and feeling dizzy. Others may have loose skin, increased bruising and thin scars. In more severe cases, children may have reoccurring bladder infections or digestive problems like diarrhea or constipation.

Seeing that the eye is made up of 80 % collagen, a child with severe hypermobility may also experience eye problems. Collagen is further found in all the tissues and structures involved in speech and swallowing. Thus, children with severe hypermobility may experience problems with chewing, speaking and swallowing.

On the gross motor side, these children may have flat feet, poor balance and coordination as well as an impaired sense of where their joints are in space in relation to the rest of their bodies.

Most children become less flexible as they grow older and their symptoms improve. However, if you are concerned in any way, rather consult with a professional such as your paediatrician.

How is hypermobility diagnosed?

There are certain procedures like the Beighton scoring that can be followed to determine if a child is hypermobile.

If hypermobility is confirmed and your child displays some of the signs and symptoms mentioned above, it may be worth seeing a paediatric rheumotologist to determine the effect of hypermobility on your child's health. This is especially true if you notice any of the above-discussed signs and symptoms mentioned in this blog. Alternatively, you can also see a physiotherapist or Kinderkineticist that specializes in hypermobility.

Exercises for the hypermobile child

It is very important to remember that children with extreme hypermobility need to keep moving. In actual fact, the most crucial therapy for hypermobility is exercise. Although lying on a bed whilst engaging in screen time can feel nice at the time, it can make the pain worse in the long term.

Children should therefore engage in lots of gentle stretching and moving. They should also build strong muscles and a good core to minimize the effect that hypermobility can have on their bodies. The Kinderkinetici working at Kwanda Kinetics can help with this aspect of your child's development and can provide your child with an exercise program that will suit their exact needs.

In the meantime, you and your child can engage in exercises yourself. Encourage muscle strength, balance, proprioception and joint stability by taking your kid to a park or soft play area, walking the dog, swimming, playing in the garden or riding a bike.

The following exercises can also be performed at home or incorporated into your child's physical activity lessons. Just remember to first check with a health professional before attempting these exercises.

1. Bridging

Let your child lie on his back with his feet flat on the ground. Now ask him to push up through his heels to lift his bum off the floor while keeping his shoulders on the ground. Pretend to "ride" mini cars through this "bridge". Depending on your child's age, you can ask him to keep the bridge in the air for either 3, 5 or 10 seconds at a time.

To make it more difficult, put your child's feet on a cushion or other soft surface while holding a soft toy between his knees. Do this only for children older than 5 years of age.

2. Superman

Let your child lie on the floor on his tummy. To help your child build strong back muscles, ask him to lift his arms and torso as high off the ground as he can to try and fly like an airplane (with his arms stretched out to the sides).

If he can do this with ease, ask him to raise both his arms and legs simultaneously. To make it more difficult, ask him to fly with both his arms to the front (like Superman or Superwoman). Next, you can ask him to hold a ball or toy in his hands and lift it from the floor as well. Keep this position for either 5, 10, 15 or 30 seconds at a time. Repeat this at least 3 times a day.

3. Push Me Over

Let your child sit on a comfortable seat cushion. Now lightly apply pressure in an attempt to throw your child off balance. Your child must make an effort to keep their balance. To train all the muscles, push your child forward, backward and sideways.

You can also ask your child to stand in a kneeling position (bum is not allowed to touch heels) and catch a ball. To maintain balance, he will need to use all of his core muscles. Alternatively, ask your child to sit on top of a huge ball. Again, all of your child's muscles will work to keep him upright.

4. Plank

A wonderful exercise for building core strength is the plank posture. Let your child lie on the floor on his tummy. Now ask your child to push up with his forearms and toes while lying on his stomach. Do this with your child to demonstrate what he should do. Keep this position for either 5, 10, 15 or 30 seconds at a time. Repeat this at least 3 times a day.

5. Walking like a crab

Start off by asking your child to sit on the floor. Now ask him to lift his bum off the surface by pressing on his hands and feet. Next, ask him to walk like a crab. Take note: walking backward like a crab (with the hands leading) is easier for most children than walking to the front (with the feet leading the action).

To make it more difficult, you can ask your child to carry something around on his belly. Older children can play crab football with their siblings or friends.

6. Walls slides

Ask your child (older than 5 years) to stand with his back against a wall. Now show your child how to gently slide his back down the wall while bending his knees at a 45-degree angle. (Older children can move all the way until they reach a 90-degree angle). From there, he can straighten them again.

Make sure that your child's knees stay facing forward whilst executing this skill. The knees should not fall inwards towards each other. If this is the case, rather stop the activity completely. Let your child repeat this exercise 5 - 10 times.

More strategies to help the hypermobile child

Protection of joints

Encourage your child to flex and extend each joint fully at least once each day. This will support preserving the joints' range of motion. Keep the movements slow since bouncing or jerking with a light touch can damage joints.

Recognize when your child is in pain and learn to respect it. Also, recognize the difference between general discomfort and joint pain brought on by overuse.

You can teach your child to refrain from repeating a movement by noticing which action caused a joint to become stressed or painful. (A lot of children with hypermobility find continuous jumping activities painful after a while. Thus, monitor your child when he is jumping on the trampoline).

You can also teach your child to avoid holding his hands in a way that forces his other fingers to face his little finger. Rather show him how to move his fingers in the direction of his thumb. For instance, avoid placing your palm flat on a table to sweep crumbs off of it. Instead, position your hand so that the palm is towards you and the little finger is resting on the table. After that, sweep the table of the crumbs.

Next, you can teach your child to avoid clenching his fists. Let him rather use wider-handled objects instead of narrow ones, which will put more strain on the joints and tension on the hands. For instance, let him use big hair brushes, thick pencils, silverware with wider handles and an electronic toothbrush rather than the conventional ones.

It will also benefit your child to avoid pinching anything between his thumb and fingers for an extended period of time. To ease the stress on the joints, your child can use a book holder if he is going to read his favourite book for an hour or two.

Lastly, do not let your child do the "party trick" of over-extending his joints! This will only result in pain.

Healthy body mechanics

To help your hypermobile child cope with everyday postural demands, he should sit at a desk with his feet flat on the ground. His thighs and forearms should be horizontal and the desk just below elbow height. An angled work surface or desk will put his neck in the ideal position.

A foam wedge cushion may also help your child if he is slouching in his chairs. Also allow him to sit on a chair or bench if sitting on a carpet with crossed legs is uncomfortable. To lessen the strain on the child's hips and knees when getting up and down from the chair, raise the chair's height.

Encourage your child to avoid crouching (or "w-sitting" on the floor with his bottoms between his knees).

Teach your child to carry weighty items near his chest while carrying the load on his forearms. Furthermore, if he is carrying things with his palms open, it will equally distribute the weight over his forearms. Encourage your child to carry school books in a backpack with comfortable straps (put over BOTH his shoulders). Again, this will equally distribute the weight. Remind him to place the heaviest objects closest to the bag's rear.

Moving around

Remind your child to keep moving throughout the day. Sitting still will only allow the joints to become stiff, leading to more discomfort. Even if your child is in pain, moving around gently throughout the day will assist.

Practically, this means that your child should get up every half an hour and walk around after watching TV or playing games on the computer. Also, remember to get out of the vehicle at least once per hour to stretch and move around when you are going on lengthy car trips.

When your child is writing or performing other manual tasks, remind him to relax his grip every 5 to 10 minutes. Furthermore, encourage your child not to sit at the desk with his head on his hands as this can put a lot of stress on his wrists. Rather allow him to lie down on his arms when he is tired.

Sport and the hypermobile child

Overweight children put their joints under more strain. Thus, it is important for a hypermobile child to be as active as he can be. Although the curriculum may need to be adapted, hypermobile children should really engage as much as they can in physical education, unless instructed otherwise.

If your child is hypermobile and he experiences pain when exercising, ask him to avoid playing unnecessary high-impact sports like rugby. Rather encourage him to participate in low-impact strengthening exercises like walking, riding a bicycle or swimming on a regular basis. All of these help to enhance joint strength. Remember, strengthening your child's joints can help to lessen his pain.

If his ankles and knees are very lax or flexible, it will help to wear supportive athletic shoes with padded soles rather than going barefoot. Also, if your child has difficulty dressing himself, buy shoes or clothes with Velcro attachments or elastic laces.

Summary

Take things slowly. You don't have to implement all of these changes at once. It will be simpler to stick with these strategies if they are progressively incorporated into your child's daily routines.

Please contact us for more guidance if your child has used the above-mentioned strategies and techniques consistently but still has substantial pain or functional challenges. We will be happy to assist wherever we can. Until next time, happy moving moments!