Wednesday, January 30, 2013

Electrical Muscle Stimulation Treatments for Cerebral Palsy

Electrical Muscle Stimulation Treatments for 
Cerebral Palsy

By John Lehman
Electrical Muscle Stimulation (EMS) refers to a group of treatments that make use of electrical current to stimulate nerve endings, with the aim of reverting damage to the patient’s nervous system. Children suffering from cerebral palsy often have issues with movement and muscle spasticity, and EMS has proven to be effective at treating these issues, improving their overall quality of life. Combined with physical therapy, research has shown that EMS can increase walking speed, reduce muscle spasticity and improve overall motor function.

Types of Electrical Muscle Stimulation

EMS can be broken down into two main categories:
  • Neuromuscular Electrical Stimulation (NMES) – Also known as Therapeutic Electrical Stimulation (TES) or Functional Electrical Stimulation (FES). This form of the treatment is usually provided by a medical practitioner. Unlike Threshold Electrical Stimulation, NMES uses a higher voltage in shorter increments, with the aim of stimulating muscles to contract.
  • Threshold Electrical Stimulation – This treatment differentiates itself from NMES, as it does not induce muscle contractions. Instead, a lower voltage is used over a long period of time. Patients can purchase devices for this treatment without a prescription and use it at home, typically while sleeping.

How EMS Works

Whether treating cerebral palsy or other motor dysfunctions, EMS follows the same procedure. First, electrodes are placed on the skin near muscles that have atrophy or are weaker than their counterparts. These electrodes are attached to a small electric generator, operated by patient (or in this case, the parent), or by a medical practitioner.
As mentioned before, Threshold Electrical Stimulation is usually performed at home, with the parent sending minor amounts of electric current through the electrodes over the course of several hours. With NMES, the patient is subjected to a slightly higher level of current, which coerces the muscle to contract. In either case, the electric current is mild and should not cause any pain or discomfort for your child.

How Effective is EMS?

Although doctors can usually agree on the benefits of EMS, many find that the therapy is unnecessary or unreliable since it does not produce permanent results. EMS typically needs to be conducted over a long period of time, as a single session of EMS will only temporarily improve motor function in the patient. Marked improvement is usually seen after the patient has undergone treatment between one to three months, with 2-hour sessions every day. Any prolonged breaks from the treatment may result in your child’s spasticity returning to an abnormal state. Because of this, many patients undergo the treatment throughout their life.
Although research is promising regarding the use of EMS for cerebral palsy patients, most research suggests that it is supplementary to standard treatments. Typically, EMS is combined with exercise or some other form of physical activity, depending on the child’s muscle condition. Some studies suggest that EMS alone can be used to treat smaller muscle groups, such as forearms or wrists. For larger muscle groups, such as leg muscles, EMS would be combined with another form of physical therapy.
Nevertheless, research is ongoing as to whether EMS can stand alone as an effective treatment for cerebral palsy and issues with motor skills. Ask your child’s doctor about EMS and whether it could help your child’s spasticity.

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Understanding and Treating Epilepsy

Understanding and Treating Epilepsy

By John Lehman
Some children who suffer from cerebral palsy have a chance of developing epilepsy, a seizure disorder brought on by brain injuries or certain neurological disorders. In fact, children and adults with cerebral palsy have a significantly higher chance of developing epilepsy than those not suffering from the disorder. Although there is still much to learn about epilepsy even today, there have been many advances in diagnosing and treating the condition.


Epilepsy is usually identified after the victim has received more than two randomly occurring seizures. When a person suffers from a seizure, the brain receives an overload of electronic signals powerful enough to disrupt normal brain functionality. This typically results in unconsciousness, involuntary muscle movements or spasms, emotional outbursts and loss of memory, though it varies depending on the person and the severity of the seizure.


If you are concerned about your child having seizures, or your child has experienced his or her first seizure, set up an appointment with your doctor immediately. When children with cerebral palsy are experiencing seizures, a doctor can perform an EEG exam to assess their condition. Using a recording device, your doctor will scan your child’s brainwaves for abnormalities. Once the scan is complete, the data will be sent to a neurologist for analysis.

Types of Seizures

For those suffering from cerebral palsy, seizures associated with epilepsy are often categorized into two distinct types. Symptomatic seizures are identified as such when there is a specific, identifiable cause such as a disease or abnormality in the brain. Cryptogenic seizures, on the other hand, have no directly identifiable cause. These seizures are also known as idiopathic seizures. In these cases, doctors tend to look into the patient’s family medical history to see if the seizures are genetic.

Treating Seizures and Epilepsy

Once a seizure has begun, there is no way to stop it. Instead, the best thing you can do to help is to ensure your child is safe and comfortable. Clear the environment of potential hazards that could physically harm your child, as their uncontrolled movements could lead to cuts and bruises. Provide them with a pillow or a blanket so they may rest comfortably once the episode has passed. Contrary to popular belief, never attempt to stick anything in your child’s mouth when they are suffering from a seizure, as this could lead to serious injury (including choking or damage to teeth).
A single seizure is indeed a cause for alarm, but it may not be indicative of a seizure disorder. Remember that a doctor will likely not diagnose the condition as epilepsy if this is your child’s first seizure. In the case of a second or even third seizure, your child’s doctor will consider different forms of treatment, such as antiepileptic medications. If these do not prove effective, the doctor may recommend surgery.
There are other methods available to reduce the likelihood of a seizure occurring, including maintaining a healthy diet, keeping a balanced sleep schedule and exercising regularly. Your child’s doctor should be able to advise on which treatment is the best fit for your child’s condition.

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Friday, January 25, 2013

Hyperbaric Oxygen Therapy: Does it Work for Children with Cerebral Palsy?

Hyperbaric Oxygen Therapy: Does it Work?

By John Lehman
View similar stories
Hyperbaric Oxygen Therapy (HBOT) is commonly used to treat scuba divers with the bends, but recently, the therapy has been used to treat certain types of cerebral palsy, as well. Opinions vary as to whether or not HBOT is an effective treatment for children with cerebral palsy. Some research has shown improvements in motor, verbal and visual skills. However, others feel there isn’t enough conclusive data to recommend it to people with cerebral palsy. We’ll review both sides of the argument to help you decide if HBOT is the right treatment for your child.

What is Hyperbaric Oxygen Therapy?

When using HBOT, the patient enters a specialized room or a glass chamber designed for manipulating air pressure. The procedure is painless and patients can wear comfortable clothes, listen to the radio, read or watch television while inside the room. The average session lasts roughly an hour, including decompression once the session has finished.
Once the patient is inside, the room is sealed and the air pressure within is raised to a point where the patient is breathing 100 percent oxygen. In comparison, the air you are breathing right now contains approximately 20 percent oxygen. Increasing the air pressure in this way allows for the lungs to take in three times as much oxygen as they normally would. With more oxygen intake within the body, damaged or disabled cells can be regenerated and potentially given a second chance to become functional again.

Are There Any Risks?

As with any medical procedure, risks do exist when using HBOT. Patients undergoing HBOT may experience barotrauma, a form of ear damage related to changes in pressure. The medical practitioner on site should be able to advise you on how to reduce health issues related to compression and decompression, which should prevent this from occurring. Other issues associated with HBOT include oxygen toxicity, headaches or fatigue. Thankfully, these risks are not very common.

Does it Really Work?

HBOT is a controversial treatment for those with cerebral palsy. Within the last decade, many studies have been conducted and results have varied. In 1999, a study was published by researchers at McGill University to test the effectiveness of HBOT in children with cerebral palsy. The study took 25 children with cerebral palsy, who each underwent 20 sessions of HBOT over a month-long period. Follow-up tests concluded that 67 percent of the children showed improvement in movement and a reduction in muscle spasticity.
However, a study from Canada in the late 1980’s was met with skepticism. The study gathered 473 children afflicted with spastic cerebral palsy and administered 20 one-hour sessions of the therapy to 230 children within the group. Upon reevaluation after six months, roughly 75% of the treated children had improved balance and a lowered frequency of convulsions.
The controversy stems from the remaining 243 children who were grouped into a placebo study. Unlike standard placebo studies, these 243 children were treated with a reduced version of HBOT, using 1.3 atmospheres of pressure as opposed to the 1.7 atmospheres of pressure used for the original 230. This has led some researchers to claim that the study did not use a true placebo. An article written by Pierre Marois provides further details regarding this controversy.
Even today, research is ongoing in regards to the effectiveness of HBOT for cerebral palsy. While more studies are published demonstrating improvement in the quality of life for those treated, others point out that the treatment does not cure cerebral palsy and that the effects of HBOT are not permanent. HBOT can also be a costly procedure and, therefore, may not be available for all families whose children have cerebral palsy. In any case, it’s best to speak to your child’s doctor about HBOT to see if the treatment is worth trying for your child.

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Wednesday, January 23, 2013

The Truth About Dane: A Cerebral Palsy Story

The Truth About Dane

By Julie Ufema
Julie Ufema and her son Dane, who has cerebral palsy, celebrate his successes.My son Dane has Cerebral Palsy. It’s not a bad word. No, not necessarily a good word either. Before I had Dane the most I knew about CP was that Blair’s cousin Geri had it on “The Facts of Life.” Not a lot to go on, admittedly.
At 24 weeks I started going into labor twice a day, every day around 10:00 am and 2:00 pm. I was put on strict bed rest and after being hospitalized, life-flighted and completely scared out of my wits, Dane insisted on being born 11-1/2 weeks early. There was no stopping Dane then, just as there is no stopping him now.
He was strangely perfect at over 3-1/2 lbs. and 17 inches long. His Apgar scores were an 8! (That’s equal to a silver medal at the newborn Olympics.) They called him ‘the boring baby’ in the NICU, quite a compliment with what they see on a regular basis. There was good news all around – until that day.

Receiving a Diagnosis

They HAD to do a cat scan of Dane’s brain because he was a ’29 weeker’. It’s simply mandatory. No one expected to find what they found. Dane had two types of brain damage. The first occurred before birth and the second occurred afterwards, not unusual for such a premature baby.
We learned that the scale of brain damage severity ranges from 1 to 4, 4 being the worst-case scenario. After much deliberation the general consensus was that both of Dane’s ‘gray spots’ were about a 3.
Speculation flew. Dane would never talk. He wouldn’t eat or swallow on his own. No one really committed to the mobility issue. I appreciated that the doctors didn’t claim to be God, able to predict our future. But then there were moments I wished that someone would, just so I could process the news and move on with our lives.

Finding Help

We got help, immediately. He had an aide, teacher, occupational, physical and speech therapist come to the house weekly. I had no fear of the ‘never speaking’ issue when Dane was chatting up a storm at 10 months old. He began screaming bloody murder almost immediately. Dane’s all-time, record-breaking temper tantrum topped out at an eardrum destroying, seven-hour stretch. He had moxy. That was for sure!
Fast-forward five years and Dane is beyond a miracle. He is healthy as a horse. No glasses or hearing aids necessary. He has entered mainstream kindergarten with no educational plan for a developmental delay. Dane simply can’t walk or use his hands effectively. He can’t write, sit up unassisted or feed himself beyond finger foods. But his mind, his sense of humor, the indescribable gleam in his eye is all truly infectious.

Experimenting with Treatments

All that love him want him to live to the fullest so we opted to have two surgeries to help him do just that. I promised Dane that I would always be his voice when he couldn’t speak for himself. I truly believed he would want to take risks to reap the rewards. Now I find myself questioning just how far we should go.
The first surgery was a complete success. He had a spinal dorsal rhizotomy. I describe it as an incredibly sophisticated game of ‘Operation’ where they open your spine and test the nerves for over or under stimulation. If acting abnormally, the nerves get cut. After a tough recovery, Dane responded extremely well to this surgery.
Dane then underwent an Intrathecal Baclofen Treatment. The surgeon inserted a hockey puck-sized pump in Dane’s belly, hooked up to a tube that wraps around his side and then feeds into his spine. The oral muscle relaxers he once took that unnecessarily affected his brain could now be sent directly to the parts of his body that needed them most and at a much higher dosage. The benefits were immediately noticeable.
Dane could isolate his pointer finger as opposed to ‘raking’ his food with many fingers. He properly held a crayon instead of fisting. He could reach above and behind his head. His speech seemed to improve. His arms and hands comfortably laid at rest when not in use. Small things that most people would never notice, never go unnoticed around here.

Questioning Our Decisions

BUT, the incision wouldn’t heal. It burst open three weeks after the first surgery in the car on the way home from vacation.  A one in a million side effect and there it was, right in front of my eyes.
At the hospital they laid Dane out, gave him a local, proceeded to clean out the original incision and then stitched him back up, all the time hoping that that would be the last of it. I held my screaming baby boy’s hands and promised him that this would be the end of it. This was as bad as it would get. I didn’t know that I was wrong. I clearly didn’t know that I was right but I was desperate to make him feel better.
Two weeks later we found ourselves back in the hospital with another burst incision. Again, they cleaned him up, and without stitches, sent us home for a few days. Four days later, the bubble had grown back again. This time I heard the word I had been dreading, ‘surgery’.
Soon we will go in, for what I hope is the last time on this issue. The doctor wants to try and save the pump – cut away the stretched skin and re-close. My motherly instincts tell me to scream, “Just take it out! For the love of all things good and holy, just take it out!”
But what would I say if I was Dane? I would want every chance possible. We can try again when Dane is bigger and stronger but that will require another surgery. I’ve never waited for anything in my life and the kindred spirit I’ve found in my beautiful, willful, stubborn son stares straight into my eyes and trusts his momma to do what’s right.
Life, for me, was always about being right, but after meeting my children I learned that life is really about doing what’s right.  With this next step I just hope we all do right by Dane.

About the Author

Julie Ufema lives in Central PA with her husband, Jason, in-laws and two sons. After deciding to start a family, Julie and Jason found themselves plagued with fertility problems. They had just about given up when their first son, Jett, was conceived. Julie and Jason were quickly blessed with a second son, Dane. Within days of Dane’s birth they received the shocking news that Dane had cerebral palsy and Jett was diagnosed with autism. Julie has written a narrative memoir chronicling the ups and downs of raising two children with special needs and continues to write and make films as time allows.

Tuesday, January 22, 2013

Pediatric Stroke & Cerebral Palsy

Most people think strokes affect only adults, but they can also occur in children, even before birth. In fact, pediatric stroke is one of the leading causes of death in children. Children who have suffered from a pediatric stroke also have a high chance of developing cerebral palsy. Learn more about pediatric stroke in our latest blog.

Thursday, January 10, 2013

Brothers with CP Break Boundaries in the Music Biz

CP Family Network is proud to present our friends Matt & Craig Clizbe, brothers with #cerebralpalsy who have taken their passion for music and created their own music promotion company. Read all about their journey and watch their amazing documentary video in our latest blog!  If you have questions for Matt & Craig, please comment on the article.

DIY Blenderized Diets for Tube Feeding

DIY Blenderized Diets for Tube Feeding

By Lee Vander LoopCP Family Network Editor
View similar stories.
Some children with severe cerebral palsy have feeding disorders which require tube feeding. Children who are unable to fulfill their nutritional needs using traditional feeding methods, those with oral motor skill dysfunction or children at risk for aspiration are typically candidates for tube feeding.
Often, doctors prescribe a commercial feeding tube diet, called an enteral formula, which has been specifically designed to meet a child’s nutritional requirements. However, parents still have the option to create their own blenderized diets with their doctor’s blessing. After all, homemade blenderized diets were the original tube feeding meals before the introduction of commercial formulas.
Any child with a feeding tube should be followed closely by a nutritionist, regardless of whether they’re on enteral feedings, blenderized diets or any other type of tube feeding regiment. Some parents may prefer a blended diet for their child, but are intimidated with the demands of researching calories, volume and nutritional content of a blended diet. It sounds like a daunting task, but many parents have developed their own easy, time saving techniques!

Is a Blenderized Diet Right for Your Child?

There are many factors to consider when deciding if a blenderized diet is the right choice for your CP child.
  • Diet can be customized for taste and nutritional need
  • May be more cost effective then commercial formulas
  • May be better tolerated then commercial formulas
  • Can be customized to include a food group rich in any nutrients found lacking
  • May not provide all vitamin, mineral, fiber, hydration and caloric needs
  • Can clog tubes
  • Requires close monitoring and supervision by a dietician or nutritionist
  • More time consuming than commercial diets

Recipe Sources

We’ve identified a few resources and recipes that parents can refer to when selecting the best blended diet for their child. One site is the Blended Food Resource Group at This group provides tube-fed individuals with information, education and support regarding alternatives to commercial formula when medically appropriate.  In addition to their list of recipe suggestions and sample recipes, they highlight:
Pros and cons of a blended diet
  • Important information to get started
  • Blenders recommendations
  • Tips to avoid clogs and guidelines for clog removal
Their forum offers a treasure trove of recipes and guidelines. I was especially impressed with this site when I noted that their sample recipes and forum recipes all provided exact caloric values of each ingredient.
One important factor I found mentioned over and over was the need for a high-speed mixer such as Vitamix, Blendtec or other blender capable of pureeing whole foods.
In the Ainsley Rae’s Blenderized Diet blog, a mom details important tips about how to use a variety of blenders and mixers, and provides guidelines for creating an Excel spreadsheet to accurately record your child’s diet and calories so that they can be reviewed by a nutritionist.

Sample Recipes

Breakfast Blend
1cup whole milk
1 2oz container stage 1 fruit
2 TBSP molasses
1/2 cup baby oatmeal with probiotics and dha
1 heaping spoon of greek yogurt
This makes about 375mls and appx 465cals… (1.2cals/ml)
The breakdown appx is 15g fat, 53g carbs and 12g protein.
Fruit Based Blend
1 tin banana & mango baby puree tin – 90cals
2oz avocado – 90 cals
2 T. cooked quinoa – ~50cals
1/2 t. probiotics
20mls yoghurt – ~20cals
2 t. olive oil 80 cals
2 T. baby rice cereal – 40cals
70mls rice milk – 46cals
+/- 2t. Agave syrup – 31 cals
Total 447 cals, 95%=425cals, therefore over 300mls = ~1.4cals/ml
1st Blender Meal
1 avocado–350calories
1 pear–95calories
3oz of tofu–70calories
1 cup cheerios–150calories
1 cup whole milk–150calories
3tsp milk fortifier (dari-free)–70calories
2Tbsp flax oil–240calories
probiotic powder
Total calories = 1125

Additional Resources:

Complete Tubefeeding: Everything you need to know about tubefeeding, tube nutrition, and blended diets
Blog: Mom backs real blended food for tube-fed tot
Blog: Mom blogs about her success with Blenderized Formula @ Homemade Blenderized Formula for G-Tube
Lucy’s Homemade Food Recipes for Feeding Tubes – Real Food for the Tube
Study: “Pureed by Gastrostomy Tube Diet Improves Gagging and Retching in Children with Fundoplication”
Meal Time Notions Products
Blenderized Diet
The Oley Foundation: “Making Your Own Food for Tube Feeding”

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Wednesday, January 9, 2013

Cerebral Palsy Occupational Therapist

Does your child have an occupational therapist? Check out this informative article (small excerpt located below) about what to expect from your occupational therapist. 
Occupational therapy (OT) and rehabilitation deals primarily with the many muscles responsible for wrist, hand, and finger movements, muscles involved in facial expressions, and tongue movement and swallowing reflexes. Occupational therapists are trained in the rehabilitation of these muscle groups to help patients acquire or improve daily living skills needed for self-care, work, and play.
Occupational therapy uses a regiment of exercises, adaptive equipment, and training to help a child achieve the fine motor and life skills needed in work and play, further assisting a child in realizing goals and independence.
This type of therapy can be especially helpful to children with cerebral palsy, but any child experiencing challenges with swallowing, using eating utensils, holding and manipulating a pencil, dressing, or playing with small objects will benefit from occupational therapy.

Friday, January 4, 2013

Thursday, January 3, 2013