EDS in Children

Groundbreaking New Treatment Options

Your child is super flexible and a star gymnast. Unfortunately, her growing pains can be unbearable at times, and unresponsive to conservative care. Her knees can pop out of alignment while walking across the room. You are concerned. Your doctor thinks your daughter may be hypermobile. What is EDS? What are the different types of EDS? What causes EDS? What are common symptoms of EDS in children? What are the treatment options for EDS in children? What regenerative options exist? Meet MF. Let’s dig in.

What Is EDS? (Ehlers-Danlos Syndrome)

Ehlers-Danlos Syndrome (EDS) refers to a group of disorders that affect the body’s connective tissue including skin, tendons, and ligaments. It is a hereditary disorder which means you are born with it. EDS has many different signs and symptoms which can vary significantly from patient to patient. It most commonly affects the skin, joints, and blood vessels. The estimated prevalence for all EDS varies between 1/10,000 and 1/25,000 (1).

Are There Different Types of EDS? (Hypermobile, Classic, Vascular)

The three most common types of EDS are:

Hypermobile

Hypermobile EDS ( hEDS) is the most common form of EDS.

Classic

Classic is the second most common type of EDS. Previously is was also called EDS Type I & II.

Vascular

Vascular EDS is quite rare and is the most severe type of EDS. Vascular EDS is much different from Hypermobile and Classic EDS. In addition to loose joints, and translucent skin these patients are a risk for life-threatening rupture of the intestine, uterus, and arteries.

What Causes Ehlers-Danlos Syndrome?

Certain types of EDS are hereditary. This means that you are born with it. One of the underlying problems in patients with EDS is their production of collagen. Collagen is a protein that provides stability and strength. Collagen is the main component of connective tissue. Examples of connective tissue include ligaments, tendons, cartilage, and bone

Family history is also a risk factor.

EDS Symptoms (Joint Hypermobility & Pain)

Symptoms vary depending on the specific type of EDS and its severity. All types of EDS affect the joints. Common symptoms include:

Joint hypermobility. It can be found in up to 30% of children (2).

Fatigue ((3)

Anxiety

Muscle and nerve pain (3)

POTS: Postural Orthostatic Tachycardia is a syndrome that involves a problem in the central nervous system (4). Specifically, there is a dysfunction of the nerves that govern involuntary body functions such as heart rate and blood pressure.

Skin that easily stretches

Delayed wound healing

Ankle Pain After Walking

More than any other joint, our ankles bear the burden of all of our body weight. The ankles aren’t large weight-bearing joints, like our hips or knees; comparatively speaking, the ankles are rather small for the tasks they are assigned to do. If the ankles are normal and healthy and there isn’t a weight issue placing excess stress on the ankles, the ankles can typically bear the forces of walking, running, hiking, and so on quite well. However, when the ankles are weak or carrying too much weight, any additional forces placed upon them—even something as simple as walking—can create problems. Do your ankles get sore after walking? What about foot and ankle pain after hiking? If so, it’s a good idea to proactively address it now, before it gets worse, rather than resigning yourself to it and decreasing or stopping the activities you enjoy. We’ll explain more in a moment, but first let’s take a closer look at the structure of the ankle.

Ankle Pain When Running

There are multiple causes of ankle pain while running. The six major causes are: Stress Fracture A stress fracture is a small crack in the bone due to overuse and repeated impact. They are a common cause of pain in runners, accounting for up to 16% of injuries. The shin bone (tibia) is the most commonly affected bone accounting for approximately 40 % of stress fractures. Pain is the most common symptom. Plantar Fasciitis. The plantar fascia is the thick connective tissue that extends from your heel to your toes. Plantar fasciitis is the inflammation of the plantar fascia and is the most…

Arm Throbbing

In many patients, irritated neck nerves don’t present as a symptom in the neck. In fact, sometimes the only symptoms of irritated nerves in the neck occur in the arm muscles, as either tightness, throbbing, or both. While the arm throbbing might be frustrating as it’s happening, you might not think a whole lot about it, especially if it only happens on occasion. However, ignoring it is not a good idea since it is often a warning signal of a bigger problem in the neck. These body connections occur all the way back to when we were a fetus, like the neck, shoulder, and arm.

Back of Knee Swollen

Back of knee swollen? Swelling in the back of the knee is not something that is talked about too often. It can be uncomfortable or sometimes painful with the movement of the knee or, even with rest. It often stems from an orthopedic-related issue or, perhaps some other medical condition. Let’s dive in…What’s Causes Swelling in the Back of Your Knee? The back of the knee contains a variety of anatomical structures that can be affected and result in pain, swelling, numbness, tingling, etc. Muscles and tendons behind the knee that could be the source of pain or pathology could be one or more of the following: Gastrocnemius, Soleus…

Back of Knee Tight

Stiffness in the back of the knee can be a sign that there is damage or inflammation in the joint, arthritis, or a baker cyst. This might be due to an injury, overuse, or medical condition. If you are experiencing stiffness in your back knee, it is important to see a doctor determine the cause and get treatment. Common causes of stiffness in the back of the knee include: tight muscles, tendons, and ligaments, Injury to the joint or surrounding tissue, overuse such as from running or biking for long periods. Stiffness at night can potentially indicate damage to the joint…

Brain Fog

Brain fog is one of the hallmark symptoms of Craniocervical instability. It is characterized by slow thinking, difficulty focusing, confusion, lack of concentration, forgetfulness, or haziness in thought. The severity of symptoms varies from patient to patient. Ever had a bad hangover or high fever and had trouble concentrating or completing simple tasks? This brain fog. Some patients describe it as a generalized haziness in thought as if cotton were stuck in the head. In addition to cognitive impairments, many patients also report generalized mental fatigue making complex tasks almost impossible. The exact cause of brain fog is unknown. Possible explanations include…

Cervicalgia / Neck Pain

Cervicalgia is also known as neck pain, which is an all-too-common, unpleasant pain. Read here to learn the symptoms, diagnosis, and treatment options. We will discuss other causes for cervicalgia. What symptoms are associated with cervicalgia? How is cervicalgia diagnosed? What are the treatment options for cervicalgia? Cervicalgia is a medical term used to describe neck pain. It is very common and affects approximately 2/3 of the population at some point in their life. Cervicalgia is the 4th major cause of disability. Risk factors include injury, prior history of neck and musculoskeletal pain, jobs that require a lot of desk work, low social support, job insecurity, physical weakness, and poor computer station setup.

Chronic Fatigue

Have you ever had a challenging all-day hike, athletic endeavor, or worked a double shift and felt exhausted the next day? Later that day or the next morning, moving across the room may have seemed almost impossible and took herculean power. Now image this occurs on a daily basis without any provocation. 24/7 simple tasks are nearly impossible due to a lack of strength and energy. This is chronic fatigue, and it is one of the common symptoms associated with craniocervical instability. Severity can vary and in severe cases, patients are confined to their beds. Aggravating and alleviating factors often times can not be identified.

Chronic Headaches

Do you suffer from chronic headaches? Maybe it’s a daily issue, maybe once a week, maybe even less often, but one thing’s for sure—when a chronic headache kicks in, it can be a real pain in the neck, literally. In order to effectively address chronic headaches, you have to first determine if the pain is caused by a problem in your neck. Let’s take a look at a few neck issues that can cause headaches: Weak neck muscles – The head, on average, weighs about ten pounds, so when the neck muscles are weak, it can make your head feel a bit like a bowling ball that your neck can’t quite balance. There are many muscles that, along with the cervical spine, work together to help support the neck and aid movement…

Gastrointestinal (GI) Problems

Gastrointestinal (GI) problems can be debilitating comprising one’s wellbeing and ability to confidently engage in life. Symptoms vary and can include nausea, bloating, constipation, diarrhea, delayed motility, abdominal pain, irritable bowel-like symptoms, heartburn, and reflux. GI problems can be due to structural and functional problems within the gut itself. Examples include hiatal hernia and bacterial overgrowth. Less appreciated is the fact that many patients with Craniocervical instability (CCI) can also have significant GI problems. Regrettably, many of these patients undergo extensive, costly GI evaluations only are told that their examinations and studies are normal. This can be extremely frustrating. For these patients…

Knee Hyperextension

The knee is a hinge joint between the femur and the tibia along with an accessory bone, the fibula. These bones are held together via ligaments that keep the bones aligned while the joint goes through its natural range of motion. These ligaments are: Medial Collateral Ligament (MCL), Lateral Collateral Ligament (LCL), Anterior Cruciate Ligament (ACL), Posterior Cruciate Ligament (PCL). from zero degrees fully extended to 140 degrees fully flexed. BUT when a force from the front to the back overcomes the strength of the ligaments the knee is forced into an unnatural position called “Hyperextension” which, in turn, can…

Rapid Heart Rate

Rapid heart rate can be debilitating, compromising your wellbeing and ability to complete the easiest of tasks, and, unfortunately, it is a common symptom of craniocervical instability or other upper cervical conditions. Normal resting adult heart rate ranges from 60-85 beats per minute. Tachycardia is a medical term for heart rates of 100 beats per minute. Most of us have experienced rapid heart rates after vigorous exertion or exercise. Remember how your heart was rapidly beating after wind sprints or chasing after your dog who jumped the fence? Your heart is rapidly pounding in your chest. Unfortunately for some patients that is their baseline.

Treatment Options: EDS in Children

Although there is no cure for EDS, there are treatment options that can help manage your child’s symptoms and prevent further injuries. These include:

Medications

Anti-inflammatory medications are common to address the pain.

Physical Therapy

Physical therapy is the cornerstone of care and when appropriate should be the first-line treatment. Treatment options include strengthening, stretching, and balance. When appropriate, braces and splints are often used to provide stability.

Surgery

Surgery is rarely necessary unless a given joint has been severely damaged due to dislocation or trauma.

Regenerative Treatment Options for EDS in Children

At the Centeno-Schultz Clinic, we are experts in the treatment of ligament injuries. We pioneered a nonsurgical treatment for anterior cruciate tears in patients over 10 years ago. It involves using a patient’s own bone marrow concentrate (containing stem cells) and PRP. We have published our clinical successes. We have used these skills and knowledge to treat the loose ligaments commonly found in EDS in children. Treatment options include bone marrow concentrate (BMC) and PRP. Both are powerhouses of healing that can accelerate healing and enhance stability. The integrity of a given ligament is easily evaluated in our clinic. Ultrasound is then used to precisely inject PRP or BMC into the loose of partially injured ligaments. Injections without guidance commonly utilized in other clinics are below our standard of care as there is no guarantee that the PRP or BMC are actually injected into the loose or damaged ligaments. The injections for some have been life-changing.

Meet MF

MF is a 12 y/o French girl with a known history of EDS and mast cell activation syndrome (MAST) who presented to the Centeno-Schultz Clinic with a 3-year history of headaches, neck pain, stomach pain, fatigue, visual problems, and frequent upper and lower extremity dislocations. Her knees, wrists, and shoulders would come out of joint daily creating pain and disability. This is referred to as a subluxation. Prior to her treatments at our clinic, she would have 3-5 joint subluxations per day. This severely compromised MF and her family. She was no longer able to attend school and required the use of a wheelchair. Her symptoms began after a traumatic ski injury. Treatment in France included rest, heat, ice, physical therapy none of which provided benefit.

MF underwent precise injections of PRP into the upper cervical facet joints, ligaments, and supporting ligaments in her shoulders, elbows, wrists, knees, and ankles. Her results have been miraculous. MF has had a greater than 70% improvement in her headaches, neck pain, and stomach pain. She is no longer on medication for her stomach. Most importantly her shoulder, elbow, wrist, knee, and ankle joints are much stronger. She no longer requires a wheelchair, she has returned to school and now enjoys recreational activities such as horseback riding, and indoor climbing. She is now able to enjoy being a young woman. We are deeply honored to have had this opportunity to help MF and her family. She recently shared this video of her newly found level of activity and freedom. We are so happy for you!

In Conclusion

Ehlers-Danlos Syndrome (EDS) is a group of disorders that affect the body’s connective tissue including skin, tendons, and ligaments.
EDS most commonly affects the skin, joints, and blood vessels.
There are three major types of EDS: Hypermobile, Classic, and Vascular.
Most cases of EDS are hereditary which means you are born with it.
Common symptoms of EDS include joint hypermobility, pain, fatigue, and elastic skin. Some children have POTS, a dysfunction of the central nervous system.
Treatment options for EDS in children include medication, physical therapy, and surgery.
The Centeno-Schultz Clinic are experts in the treatment of ligament injuries. Treatment options for children with EDS and hypermobile joints include precise injections of PRP into the injured ligaments.
Meet MF who underwent precise PRP injections and was able to discontinue some of her medication and regain some of her childhood joy. Great job!

1.Germain DP. Ehlers-Danlos syndrome type IV. Orphanet J Rare Dis. 2007 Jul 19;2:32. doi: 10.1186/1750-1172-2-32. PMID: 17640391; PMCID: PMC1971255.

2. Simmonds JV, Keer RJ. Hypermobility and the hypermobility syndrome. Man Ther. 2007 Nov;12(4):298-309. doi: 10.1016/j.math.2007.05.001. Epub 2007 Jul 20. PMID: 17643337.

3. Hakim AJ, Grahame R. Non-musculoskeletal symptoms in joint hypermobility syndrome. Indirect evidence for autonomic dysfunction? Rheumatology (Oxford). 2004 Sep;43(9):1194-5. doi: 10.1093/rheumatology/keh279. PMID: 15317957.

4. Sobey G. Ehlers-Danlos syndrome – a commonly misunderstood group of conditions. Clin Med (Lond). 2014;14(4):432-436. doi:10.7861/clinmedicine.14-4-432