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Hypotonia Survival Guide

What is Hypotonia?

Hypotonia, or reduced muscle tone (the amount of tension or resistance to movement in a muscle), can be picked up by pediatricians in infancy or early childhood. It is not the same as muscle weakness but it can co-exist with muscle weakness. Hypotonia may be caused by trauma, environmental factors, or by genetic, muscle, or central nervous system disorders. Sometimes it may not be possible to find the cause of the hypotonia.  In babies, hypotonia may present with head lag after 6 months old.  Also, the baby may feel like she will slip through your hands when holding her under her arms, rather than supporting her own weight with her shoulders.  While most children tend to flex their elbows and knees when resting, hypotonic children tend to hang their arms and legs by their sides. They also may have substantial weakness and little or no head control as an infant, giving them a “floppy” appearance. Symptoms may include problems or delays with mobility and posture, breathing and speech difficulties, lethargy, ligament and joint laxity, and poor reflexes. Hypotonia itself does not affect intellect. However, depending on the underlying condition, some children may take longer to develop social, language, and reasoning skills. (

To explain the difference between muscle tone and muscle strength, please refer to the following article:

Hypotonia is just a symptom and can be caused by many different conditions.


Few underlying conditions that cause hypotonia can be medically treated.  Regardless of why a child has hypotonia, the main treatment is symptomatic and supportive therapy. Physical therapy can improve gross motor control and overall body strength. Occupational therapy focuses on fine motor tasks and self help skills.  Speech-language therapy can help breathing, speech, and swallowing difficulties. Therapy for infants and young children may also include sensory stimulation programs. (

In the US, Early Intervention (EI) or Early Childhood Intervention (ECI) is available to children from birth to age three who are delayed in one or more areas of development. For children three and older, services are available through your local school district.


Always start with your pediatrician if you have concerns that your child may have hypotonia. He or she will most likely refer you to one or more of the following specialists.

Developmental Pediatrician
A pediatrician with specialized training in children’s social, emotional, and intellectual development as well as health and physical growth. He or she may conduct a developmental assessment which will determine any delays your child has and to what extent the delay is present.


A neurologist is a board-certified medical doctor or osteopath who has trained in the diagnosis and treatment of nervous system disorders, including diseases of the brain, spinal cord, nerves, and muscles. Neurologists perform neurological examinations of the nerves of the head and neck; muscle strength and movement; balance, ambulation, and reflexes; and sensation, memory, speech, language, and other cognitive abilities. They also may suggest diagnostic tests such as the following: CAT (computed axial tomography) scan, MRI/MRA (magnetic resonance imaging/magnetic resonance angiography), lumbar puncture (spinal tap), EEG (electroencephalography), and EMG/NCV (electromyography/nerve conduction velocity). ( If you are concerned that your child’s hypotonia may be caused by a muscular disorder, find a neurologist who is a neuromuscular specialist.


A geneticist specializes in genetic disorders. They will get a detailed history of your family’s background and your spouse’s family background. They will look at your child’s features and order blood tests to look at the 46 chromosomes and possibly at specific genes on those chromosomes.


Occupational Therapist (OT)
A professional who has specialized training in helping an individual develop mental or physical skills that aid in daily living activities, with careful attention to enhancing fine motor skills (hand and finger skills, eye-hand coordination and sensory integration). In a developmental assessment, the occupational therapist would assess the child’s fine motor skills, coordination, and age-appropriate self-help skills (eating with utensils, dressing, etc.). She would also look at how the child responds to and uses what he sees, hears, feels, tastes and smells. (


Physical Therapist (PT)
A professional trained in assessing and providing therapy to treat developmental delays, disease and injury using methods such as exercise, heat, light and massage. In a developmental assessment, the physical therapist would assess the ability and quality of the child’s use of her legs, arms, and complete body by encouraging the display of specific gross motor tasks as well as observing the child in play. (


Speech/Language Pathologist (ST or SLP)
A professional who is trained in assessing and treating problems in communication including: articulation (pronunciation of sounds), receptive language (understanding and processing what is communicated by others), expressive language (the ability to communicate to others), fluency (including stuttering), and voice problems (including pitch and intonation.) Some speech and language pathologists are also trained to work with oral/motor problems, such as swallowing, and other feeding difficulties. (


Sensory Integration Therapist
The therapist’s general goals are: (1) to provide the child with sensory information which helps organize the central nervous system, (2) to assist the child in inhibiting and/or modulating sensory information, and (3) to assist the child in processing a more organized response to sensory stimuli. (


A nutritionist looks at your child’s diet for caloric content and overall balance of nutrition. If your child has been diagnosed as “failure to thrive”, a nutritionist can offer some tips on adding calories to your child’s diet.


The Ear, Nose, and Throat doctor will be recommended if your child is having hearing issues, chronic ear infections, or frequent tonsillitis.


A professional trained in assessing a child’s hearing. In a developmental assessment of an infant or young child, an audiologist would look for signs of whether or not there are any hearing impairments or loss, usually by placing earphones on a child through which sounds are transmitted at various frequencies. Audiologists often work closely with speech and language specialists to address problems in communication. (


An ophthalmologist specializes in vision-related conditions. An eye exam may include dilation. Depending on the issue, glasses, patching, or surgery may be recommended.


A gastroenterologist specializes in gastric disorders. Reflux is common in children with hypotonia and can be treated with medication. If the swallow reflex is absent or if a lack of weight gain is serious, a g-tube or ng-tube may be recommended.


An endocrinologist specializes in hormone-related conditions and diseases.


An orthopedist is a doctor who treats diseases, malformations, and injuries of the bones. Many hypotonic children have flat, pronating feet and may require orthotics to help them walk or improve their gait. Some orthopedists do not “believe” in orthotics, making a trip to an orthotist necessary.


A professional who makes supportive braces and prosthetics.  Many hypotonic children benefit from leg braces called AFOs (ankle-foot orthosis) or shoe inserts called SMOs (supra-malleor orthosis) and various braces in between.  An orthotist can help assess the need for braces and will manufacture custom braces for your child.

Blood Tests
Information from

The complete blood count determines the number of red blood cells, white blood cells, and platelets in the blood. In addition, it calculates the total amount of hemoglobin, which is a protein that helps the red blood cells distribute oxygen throughout the body; and
hematocrit, which is the fraction of the blood that contains red blood cells (different from the red blood cell count). A CBC also contains information calculated from the blood measurements, including the average red blood cell size (MCV), the hemoglobin amount per red blood cell (MCH) and the hemoglobin concentration per red blood cell (MCHC). The CBC is a standard screening test doctors use to diagnose a variety of diseases and conditions. It provides doctors with a lot of information about the blood, the level of hydration in the body, and the production and life span of blood cells. In addition, it is a useful diagnostic for detecting infection, allergies, and blood disorders. (

Metabolic panel
This test measures levels of: s
odium, potassium, bicarbonate (CO2), chloride, creatnine, glucose, blood urea nitrogen (BUN). When only the first four of those nutrients are measured, the test is called an electrolyte panel. Creatnine, potassium and BUN levels are all indicators of kidney function. Glucose is measured to diagnose diabetes. Abnormal sodium levels can indicate dehydration, heart failure or kidney disease, among other disorders. (

This test looks at a product from the breakdown of muscle and can rule out muscular dystrophy (MD). With MD, the number would be in the thousands or tens of thousands, so anything that is normal or even under 1,000 rules out MD. Slightly elevated can be a testing error or increases the possibility of a neuromuscular problem. Normal is normal, but it does not rule anything out except MD.  This test is also sometimes called CK.

Thyroid stimulating hormone (TSH) is made by the pituitary gland. It tells the thyroid gland to start producing the thyroid hormones T3 and T4, which regulate metabolism. If TSH levels are irregular, it could signify a problem in the pituitary gland that makes it, or in the thyroid that processes it. Usually the thyroid is the problematic gland. Decreased activity of the thyroid gland is called hypothyroidism. Symptoms include fatigue, weakness, weight gain and slow heart rate. Hyperthyroidism is an increase in activity of the thyroid gland. Symptoms include weight loss, rapid heartbeat, insomnia, shortness of breath and anxiety. A high TSH signifies hypothyroidism. This is because the thyroid gland does process the TSH, so the pituitary senses a need for it, and keeps sending more. If the thyroid gland is overactive (hyperthyroidism), then it will use too much TSH, and levels in the blood will be low. ( Thyroid problems are one of few medically treatable causes of hypotonia, so every child with hypotonia should have a thyroid test.

Lactate and pyruvate
The ratio of lactate and pyruvate can indicate a possible mitochondrial disorder and a normal ratio rules this out. This test is hard to do correctly and has a lot of false positives.

Blood sugar
This test looks for diabetes.

Chromosome analysis
Chromosome analysis can be performed on blood, solid tissue, bone marrow, amniotic fluid cells, and chorionic villi. The following sections describe the samples needed for specific types of chromosome studies.

The above links have very detailed information about each type of chromosome test. (

Further Tests

Magnetic resonance imaging (MRI), a painless testing procedure, takes pictures of the body, much like regular X-ray,  but using a strong magnetic field instead of radiation. MRI provides detailed pictures of brain, nerve tissues, cartilage and ligaments from multiple planes without obstruction by overlying bone. Nearly 90 percent of all MRI scans are for cranial or spine disorders. However, doctors also use MRI to determine injuries to complex joints like the shoulder and the knee. Most doctors prefer the MRI for detecting brain disorders. MRI is useful in brain and neurological disorders because it can clearly show types of nerve tissue. It provides clear pictures of the brainstem and posterior brain, which are difficult to view on CT scan. Doctors also use it to diagnose demyelinating disorders (disorders such as multiple sclerosis that cause destruction of the myelin sheath of the nerve). MRI is sometimes used to avoid the dangers of angiography or of repeated exposure to radiation. The MRI scanner sends the signals to a computer, which manages the information and creates a 3-D image of the scanned tissue. The image then prints on photographic film or videotape. MRI scans can penetrate bone and provide clear, detailed picture of tissues and muscles. In preparation for the MRI, the patient lies on a narrow table that slides inside a large tunnel-like tube. The scanner then surrounds the patient with a magnetic field. A radiologist, who specializes in MRIs, examines the film or computer for abnormalities. People who are claustrophobic, agitated, or disturbed by the loud noise may be given an antianxiety medication before the examination. Infants and young children are typically sedated for the test.  Sometimes hospitals use open MRI machines that are less noisy and not as confining as the closed models but have other limitations and are typically not appropriate for a brain scan. The MRI technique operates on the principle that the most abundant atom in the body is hydrogen, which is present in every water molecule. When placed in a powerful magnetic field, such as that of an MRI machine, the nuclei of these hydrogen atoms line up in one direction, just as compass needles point to the poles of the earth's magnetic field. When energy from radio waves is directed into the field of the body part that is being examined, the nuclei are temporarily moved out of alignment. When the radio waves stop, the nuclei return to their alignment, giving off their own energy in the process. The machine's computers record the duration and intensity of these signal changes and convert the data into information that produces an image showing the internal structure of the examined part. An MRI costs about $1,000 or more per examination, and the machines themselves are prohibitively expensive for small hospitals or rural areas. (

Electroencephalogram (EEG), or a brain wave test, is a measure of the brain's electrical activity. It is used to help diagnose seizure disorders, confusion, head injuries, tumors, degenerative diseases, and other conditions that affect the brain. In a comatose patient, An EEG technician performs an EEG test. Sixteen to 25 flat metal disks (electrodes) are placed on the scalp as the patient reclines. Wires connect the electrodes to an amplifier and a recording machine. During the test, the recording machine converts the electrical signals into a series of wavy lines, which are then drawn onto moving graph paper. A doctor then interprets the results of the test to find any medical abnormalities. ( Some hypotonic children also have seizures and an EEG would be performed to confirm or rule out seizure activity.  While having electrodes placed on the scalp may annoy a baby or child, the test is otherwise painless.

An electromyogram (EMG) tests electrical responses of muscle at rest and during contraction and is used in the diagnosis of muscle and nerve disorders. (

Muscle biopsy
A brief surgical procedure to remove a pencil eraser sized piece of muscle, usually from the thigh, to then examine under the microscope. They study the structure of the muscle and look for changes and abnormalities in the muscle tissue.  A muscle biopsy is the only way to fully diagnose neuromuscular disorders.

Other tests may include hearing tests such as the ABR, tympanogram, and/or sound booth or vision exams.



Neuromuscular disorders

These are disorders which affect the muscle itself.  Diagnosis is made through a muscle biopsy which shows abnormalities in the muscle fibre. A few neuromuscular disorders have a genetic test that can rule the disorder in or out, but the muscle biopsy is the route for diagnosis for most.  Neuromuscular disorders vary in their pattern of inheritance and severity.  The muscular dystrophy organization, covers a long list of neuromuscular disorders including congenital myopathies.


Chromosomal disorders

Some disorders involve the duplication or omission of one of the 46 chromosomes.  However, there are many involving abnormalities in the chromosomes such as micro-deletions which are not usually detected in a routine chromosome test—a specific test is needed. Examples include:

        Prader-Willi Syndrome—(chromosome 15 involved) Under 6 months, hypotonia, sleepiness and feeding difficulties. Then, hypotonia becomes less, feeding difficulties stop and hyperphagia (over eating) begins, usually between the ages of 2 and 4. (US:

        Williams Syndrome: a sporadic congenital syndrome due to a microdeletion of chromosome 7 (7q11, 23) at the elastin gene focus. There is a typical facies and global developmental delay. (US:


Metabolic diseases

There are some 1,300 identified inheritable genetic disorders in which errors of metabolism occur involving a block where a catalyst or enzyme is absent or malfunctioning. This defect results in the build up of chemicals on one side of the metabolic blockage and a deficiency of vital chemicals on the other. This causes an overdosage of one or more, often toxic, chemicals and the shortage of others which are essential to normal body functioning.


Mitochondrial cytopathies

Mitochondrial cytopathies are a group of disorders caused by abnormal function of the mitochondria. Mitochondria are the powerhouses of the cell and convert food into energy. Any failure of this process causes a lack of energy in the cells and this will severely impair the working of organs such as the brain, heart or muscle. and


Connective tissue disorders

Connective tissue disorders, such as Ehlers-Danlos Syndrome, consist of several types of genetic connective tissue disorders. In general, these are due to a collagen (a naturally occurring protein) abnormality. Common characteristics include abnormalities of the skin, ligaments and in some instances internal organs. Problems include fragile and/or stretchy skin, bruising, scarring, poor wound healing and loose joints which are prone to dislocation and subluxation. . Hypermobility syndrome involving loose joints is also a connective tissue disorder.


Cerebral hypotonia, brain-based hypotonia

Cerebral hypotonia, brain-based hypotonia—the hypotonia may be the result of damage to the brain (trauma, lack of oxygen, development in utero) which may or may not be visible on a brain scan. It is not clear how this is diagnosed when there is no visible damage on a scan. However, if the child is diagnosed hypotonic cerebral palsy, then see


Benign Congenital Hypotonia

It is not clear if this is a separate condition or whether it is simply a term used when a child has gone through all tests and all tests have proved negative. Generally, for true “BCH” diagnosis, the delays are mainly motor-based (this can include oral-motor muscles affecting speech). Certainly, there are children who appear to “grow out of” the hypotonia—although they may never become great athletes. But there are also children diagnosed initially with BCH who turn out to have more specific conditions—such as those listed above—diagnosed later on.


Related conditions:



Also known as clumsy child syndrome: perceptuo-motor dysfunction: minimal brain dysfunction: motor learning difficulty. Children with dyspraxia have problems with motor planning. Some children with dyspraxia have low tone, some children with low tone are dyspraxic.

Sensory integration dysfunction

Many children with low tone have sensory issues. This means a problem with the body’s reactions to different sensory experiences. So a child with SID might over-react or under-react to stimulation—may crave swinging or going on roundabouts—or may avoid it. May freak at loud noises or may thrive on noisy places. May benefit from deep pressure such as being wrapped in a blanket. May react extremely to the same situation on different days, in different ways. Read The Out of Sync Child to learn more.


Developmental delays, learning difficulties

Developmental delays, learning difficulties can go hand in hand with the hypotonia (though remember that children can have delays and learning difficulties without having hypotonia). They may arise from a specific condition of which the hypotonia is one symptom. Or the hypotonia can lead to the difficulties—this is clearly the case with motor delays. Even with a diagnosis, the degree of difficulty can vary from person to person. It is hard to make a prognosis early on as to the kind of difficulties a child with hypotonia will face in the future, though predictions may become easier as the child matures and difficulties either resolve or become more obvious.



So your child has hypotonia. What you probably most want to know is “What does the future hold for my child? Will he or she ever catch up? What challenges will my child face?” Having a firm, medical diagnosis may help bring insight to many of these questions. Unfortunately, there are not a lot of answers out there for those children without a diagnosis, and even with a diagnosis, prognosis may vary greatly from child to child.


All parents of hypotonic children wish for a crystal ball into which they can look and see their child’s future. What the parents tend to learn is to take life one day at a time and to celebrate progress, no matter how big or how small. They also learn to look at their child’s development in relation to itself, rather than the norms. A hypotonic child who walks by age two may be doing fabulously based on his own timeline. Most hypotonic children will “get there” with therapy and time. By age five, they may not be the fastest child on the playground, but many will be there with their peers and will be holding their own. Some children are more severely affected, requiring walkers and wheelchairs and other adaptive and assistive equipment. The goal is to help your child to become as able and independent as he can possibly become.


Grieving and Other Feelings

A process that parents of a hypotonic child must go through is one of grieving. All parents who are expecting a child either from birth or adoption dream of the “perfect” baby and envision themselves as the “perfect” parents. When first told that their baby has problems, all parents experience a myriad of feelings. Many are shocked, although some feel validated if they have been noticing their child missing milestones. All are, to one degree or another, terrified. The parent’s expectations of what it would be like to have a baby are suddenly shattered. At some point, self blame enters the picture. Did I keep her in the stroller too much? Should I have nursed rather than bottle fed? Was is the half a glass of wine I had at my brother’s wedding? WHAT DID I DO WRONG???  The answer to this question is nothing. None of us did anything to cause our child’s hypotonia. 


From there, a process of grieving begins. Feelings of sadness, anger, depression and anxiety often overwhelm parents for a time. During this time, parents often feel very upset to see their child next to typically developing babies of the same age. The grief is palpable and it is necessary in order to say goodbye to the “perfect” baby that every parent dreams of and to come to love and accept the beautiful and wonderful but hypotonic baby that the parent has. For some this process runs its course in a reasonable period of time. For some, the grief is overwhelming and can lead to depression and anxiety that can affect how the parent functions day to day. Any parent who feels that they are overwhelmed by depression or anxiety should seek medication and/or counseling.  Your family doctor is a good place to start.


Another challenge that parents face is figuring out where they and their special needs child fit in. The world of typical children can be a difficult place for a hypotonic child and it is tempting to isolate one’s child. It’s hard going to a playgroup of toddlers when your child’s latest milestone is getting from the floor into a sitting position and the other children are running across the room. It is difficult to go to the mall and have a well meaning stranger ask how old your child is and react in shock when you say “eighteen months.” Friends and family, especially at first, may make unhelpful comments such as “all children develop at their own pace” and “well, maybe if you just played with him more, he’d start to sit up better!” The sad reality is that the world at large does not understand what it’s like to have a hypotonic child and the parent of a hypotonic child is usually too emotionally exhausted to teach everyone she meets how to respond appropriately. 


However, it does neither you nor your child any good to hide from the world. It may be challenging, but it is important to find friends with whom you feel comfortable, even if their children are typical and developmentally leaving your child in the dust. Friends who can listen empathically and celebrate your child’s victories, no matter how small, should be cherished! Some EI programs offer playgroups where you may have a chance to meet parents of children similar to your own. And it’s important to get out and take your child to the mall and the zoo and anywhere else you would typically go. It takes time to develop a tough skin, but at some point parents of hypotonic children learn to turn a deaf ear to the well meaning but stupid comments of strangers.

Been-There/Done-That Advice From Parents

 “The best thing I heard from Mattie’s PT was this (and I must force myself to repeat it to myself during those frustrating times)… He is on no-one’s schedule but his own. He will do things when he is ready and to put labels on him is unfair to him, it sets a different standard for him than he may need, it lowers the bar so to speak. Just one day at a time.” ~Jeanne Ambrose, mom to Mattie, 15 months, hypotonia in trunk muscles, dev delays

“It is possible to have a dx....we do only after 8 months after we first went to a neuro. But it is uncommon...and we are lucky to not have to search anymore.

I hope this is helpful and gives you hope.

When Georgia was first dx with hypotonia, before we had ANY tests done....her first neuro said that Georgia would grow out of her hypotonia eventually and long term would be ‘fine’. Although I do NOT have a crystal ball...everything is looking that way and we are OVERJOYED at that.

My husband and I made the decision that we wanted to explore all the possible reasons WHY Georgia has hypotonia. We wanted to believe that the neuro was right - she would be ‘fine’...but we wanted the assurance of all the tests to prove that.

For the past 8 months Georgia has had the tests that were relevant to her situation. Georgia’s main symptoms are that she has mild to moderate hypotonia and a delay in speech. She is 2 now. AT MY REQUEST, Georgia has had several bloodwork, urine analysis, and an MRI. We were told that we would find nothing..that all tests would come back normal. All the tests came back normal except the MRI.

So the MRI gave us a real diagnosis. The MRI showed that Georgia’s area in her brain, the cerebellum, (means: we move) controls movement, muscle tone, coordination, and some aspects of speech) has a small part on the left side that did not develop fully. Which explains EVERYTHING that Georgia has issues with.

Is this dx scarier or more serious than ‘hypotonia’ that we first received?? Initially...because it SOUNDS scarier...yes. But now, 2 months after we have received the dx?? NO, not anymore. We have talked with multiple specialists. And they all give the same prognosis as when we first had the hypotonia dx. ‘She will grow out of it eventually....she needs loads of therapy...she should be fine...never will be a star athlete’...although Georgia’s brain abnormalities won’t change..her therapy will help her permanently compensate for that.

Now we are at the same place we were when we first heard the hypotonia word. We are stronger with the information we have from the tests, BUT I am ragged and recouping from the stress and agony that the tests have put me through!!!

Our dx is broad....migrational abnormalities...but Georgia is still the same as she was before all this. We are still giving her physical therapy and speech therapy etc...BUT we have peace of mind that she does not have anything progressive. I am the one who needs to find peace and acceptance in that..and STOP comparing her to other 2 year olds.” ~Alexis & Georgia 2 (migrational abnormalities & speech delay)

“I’ll share the best advice given to me by our PT, Kathleen Tyson at All Children’s Specialty Care Center in Tampa. She gave me this advice during our very first session, when Ellie was only 6 months old and I was full of questions and desperately wanting those ‘crystal ball’ answers. This is what Miss Kathleen told me, ‘Does ANYBODY ask us as adults when we walked and talked?’

And no, no one has ever asked me or my brother that. For the record I talked abnormally early (11 months for words; 12 months for sentences), and my brother didn’t walk until almost 18 months. Now, he's the big high muckety-muckety computer guru and I am the broke a** jobless one!

So, that is the advice I’d give all newbies — sit back, relax and enjoy this ride as much as possible, because 20 years from now no one will ask how old your kids were when they walked, talked or reached any other milestone we see as life altering and earth shattering right now. I just try to think of it as Ellie being a baby longer.” ~Amy and Ellie — 8 months old in a 14 month old body


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Many thanks to Anna's mom, Holly, for all her hard work on this guide!

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