Traveling with your child with special needs

By Natan Gendelman D.O.M.P  |  http://www.healthinmotionrehab.com  |  http://www.enabledkids.ca

Traveling can be a great opportunity to learn about and experience new things together with your child. When the process goes smoothly, it is also a good way to develop closer ties among family and friends. However, this process can also be challenging, especially when traveling with a child that has special needs. Many of the patients and families I treat from overseas have experienced issues with arranging transportation, finding the right food and booking the right accommodations. All of these items need to be arranged well in advance in order for the whole process to run smoothly. As a result, I would like to cover a few things to keep in mind when you’re preparing to travel with your child. Hopefully this will aid you in plans for your own trip with your child, and also generate a discussion about what you’d like to share and learn more about in regards to traveling and accessibility.

Food in foreign countries

Now whether or not a child or adult has special needs, what a person eats can have a huge impact on their health, behaviour and cognitive function. When traveling, this becomes even more important as food sensitivities, allergies and intolerances can all pose risks during your child’s mealtime. As a result, it is important to pay attention to what you and your child are eating, and to ask questions about ingredients and preparation wherever you go. Since the regulations regarding food production change from country to country, even foods which are familiar to you and your family may be grown, produced and processed according to different standards.

For this reason, offer your child items that are light and easy to digest such as plenty of fresh (preferably organic) fruits and vegetables throughout the first few days of your trip. As well, certain foods may contain different ingredients than your child is used to, such as dyes or preservatives. As always, read the labels on the products you buy and eat, and try not to switch drastically from the kinds of foods your child is used to eating.

Accessibility Challenges

Another aspect of travel that you will need to consider is accessibility, especially if your child uses a wheelchair or other specialized equipment on a regular basis. Many countries have facilities that are said to be accessible, but this may be different from what you actually encounter while you are there. Last year when I visited Cuba, I found it very hard to watch an elderly couple struggle to climb a steep flight of stairs, as the plane they were trying to board didn’t have any other means of access. Thinking about what a person using a walker or wheelchair might encounter, it is extremely important to check with your travel agent whether the place you are going will meet your child’s accommodation needs, including facilitating ramps, elevators and a roll-in shower.

Of course, when you decide to go on a trip with your child, it is important to speak with him and help him understand where you all will be going, and what for. There are some great articles by about.com and Friendship Circle I’ve linked to below that give great tips on ways to prepare your child for traveling. By getting him used to the idea of going on the trip ahead of time, you can reduce any anxiety he may have, and prevent him from becoming overwhelmed and overexcited by the experience. I think that is an important step towards a fun and successful travelling experience.

If you have any questions, comments or experiences to share about what worked and didn’t work for you, leave me a comment down below or join our forum discussion. Thanks everyone!

For more information:

http://specialchildren.about.com/od/travelwithspecialneeds/Travel_with_Children_with_Special_Needs.htm

Some great articles from Friendship Circle’s blog about things to prepare:

http://blog.friendshipcircle.org/2012/01/09/a-special-needs-pre-flight-checklist/
http://blog.friendshipcircle.org/2012/03/05/packing-for-the-plane-your-complete-special-needs-checklist/

Assistive devices, splinting and AFOs

By Natan Gendelman | http://www.enabledkids.ca | http://www.healthinmotionrehab.com

As we’ve indicated before, cerebral palsy is a neurological condition which results from damage to a certain area of the brain. When this occurs, a child’s ability to control specific parts of his body is affected, leading to impaired function and mobility. Since the brain is not sending the appropriate signals to parts of his body, a child will try to function in any way that he can and fight the condition that he is in. In turn, this will cause hyper tone, as we have written about before in our previous blogs.

In the case of a child, having hyper tone may cause certain patterns to occur during development. High tone in the trunk, for example, will lead to high tone in his hands, arms and legs, as well as to improper sensorial development. Now, what happens is that it becomes difficult for him to learn to walk properly, perform grabbing motions, or even bend his hands in the first place. For kids with cerebral palsy, this can result in the emergence of certain patterns like forming crab hands without bending them, or performing robot-like movements where the whole body is moved at once. When these methods of moving are left unchecked, they can have severe consequences on a child’s condition, and what he will be able to accomplish.

The effects of splinting and other devices

With this in mind, many people try to address these problems through the use of assistive devices, splints and AFOs (ankle-foot orthoses). Splints and other assistive devices are often used to maintain an appropriate range of movement in a child’s joint. However, it’s important to note that their usage may cause a chain reaction to occur in a child’s condition. When a child has a splint applied, his brain is not taught the appropriate function to go with the movement. Therefore, while his limb may be held in the correct position, his muscles will be stretched passively--that is, without the child’s active participation. This sends a message to the brain that the device is a foreign body, causing his body to try and fight it. As a result, that is why a lot of therapists find that a child’s tone will go up the moment a splint is taken off.

Making the decision

So, the question is: should we be using splints? Like I’ve said before, each situation has to be dealt with as a separate case which depends on the child’s condition, his ability to move and function, and--very importantly--his age. One key factor which will affect his need for these devices is his weight bearing and movement. A crucial part of joint development, weight bearing plays a necessary role in several movements which are part of a child’s function including sitting, crawling, standing, and walking. If a child places weight on his feet and hands in the process, he will not need a splint because his function will be corrected by his own weight. As he progresses from his knees to standing and then walking, the child then learns how to shift his weight properly. However, if a child is not moving at all, then--again, depending on the case--the use of a splint or other device may prove to be the most beneficial option.

For these reasons, it is important to understand and consider your child’s needs and condition before choosing and implementing splints, AFOs and other devices. Remember, their use will immediately limit certain movements for your child. As a result, it’s a good idea to think twice, do your research and learn how to use them safely and wisely.

If you have any questions or comments about this article, feel free to leave me a message down below or send an email to natan@enabledkids.ca. Thanks everyone, and I hope to hear from you soon!

So what’s the difference between cerebral palsy, brain injury and stroke?

By Natan Gendelman | http://www.enabledkids.ca

Cerebral palsy, traumatic brain injury and pediatric stroke are often brought together under the same treatment processes and types of rehabilitation. It is common knowledge for many people who work with kids that the approach to take is often quite similar between the three conditions. However, after working with and observing children who have cerebral palsy, brain injury or pediatric stroke, personally I would disagree with this method and viewpoint. In my opinion, there are many reasons why treatment for each condition should be distinct, and the first thing I would like to examine is what makes each condition different from the next.

Comparing terms

To start with, cerebral palsy can be generalized as a condition that a child is born with. The degree of severity of his condition will depend on how severely the brain is affected, and--by following a chain reaction--on the stages of development he has missed. This will lead to impairment as he grows older if the appropriate function is not gained. Children who have cerebral palsy cannot move through the stages of development because they are not acquiring skills in the normal developmental process. In most cases, a child is taken through his individual milestones by the nervous system. For a child with cerebral palsy however, this progression is absent and this normal development does not exist. Therefore, the skills have to be acquired first, and then repeated until they become automatic. This means that when we work with a child with CP, there is no re-gaining of skills, only learning from scratch. These are things that a child will then apply in his daily life, to become a part of his everyday function.

In contrast, traumatic brain injury and pediatric stroke can be seen as having totally different circumstances. Although it will depend on when these injuries occur, often a child with either one of these conditions would have already gone through at least some of the stages of development. This means that he would have already learned and acquired certain skills before the injury. When dealing with a child in one of these situations (and again, depending on his specific age, severity of condition and other factors), treatment will involve rehabilitation--that is, the re-gaining of movement and function which has been lost because of brain damage. This is what sets conditions such as TBI and pediatric stroke apart from cerebral palsy, and is something that should be accounted for in treatment.

Learning vs. regaining skills in treatment



When working with a child that has cerebral palsy, we need to remember that the child will not be regaining skills; he will be learning ones that he has never had before. Therefore, he has to be taught from A-Z what everything stands for, the individual body parts, the way they move, and how normal function should be. In contrast, a child with a brain injury or who has experienced pediatric stroke will need to focus on this idea of regaining skills, which means we are acquiring skills that take place before the injury has occurred. It is for these reasons that the approach to treatment will need to be completely different for a child with cerebral palsy. Rather than following the same steps that patients follow for the other conditions, the child will need to be shown how to turn, roll over, and be able to build on those skills before moving onto the next step.

As a result, a child’s treatment should differ according to how the child gains valuable life function. The methods of learning for kids with brain injury or stroke should not be the same as those for children with cerebral palsy. We take this approach in my clinic’s specialized treatment program called LIFE, and that is why we call our program an education / rehabilitation system rather than one or the other--the approach will change depending on the child’s needs. Here, we teach kids how to acquire these functions, how to do them, and why. If a child does not understand, we repeat them again and again and again under the child begins to follow. By paying attention to a child’s personality and characteristics as well as to his learning and specific condition, the treatment process becomes much more successful and fulfilling for those involved. It is for this reason that I think treatment for children under each category should be approached with regards to the condition itself.

Of course, whether dealing with kids that have cerebral palsy, pediatric stroke or brain injury, the bottom line is the same: the patient must be the one to work harder than the therapist. That’s the reason why at our clinic, we try have a child do everything he has been taught by himself. In the end, the ultimate goal of treatment is to have a child learn to do things independently. By distinguishing each of these conditions, I hope that more parents, caregivers and therapists will learn from and experience success with their child as he learns and discovers the joys, wonders and surprises held by the world around him.

If you have any questions or comments, feel free to leave a comment down below or email me at natan@enabledkids.ca. Thanks everyone!

The Sky's the limit

The Sky's the limit has been doing well so much so that I decided that it should have it's own website, so that people can buy the book, write there own review and or view the site to see what it is about.

Find out more

Should your child be doing stretches?

For a child with cerebral palsy, physical therapy acts as one of the main components in improving his motor skills and developing his independent daily function.
During this process of learning and improvement, a child is educated about the use of his extremities and trunk in an appropriate / correct way. The normalization of motor function is followed by normalization of the muscle tone.

Each treatment and approach has long and short-term goals, which are based on the child’s condition, age and stage of development. One part of the process, which is widely accepted as a “one of the main treatment components,” is stretching. However, the way your child is stretched can affect his progress and what he will be able to achieve in the long term. There are two totally different types of stretching: active and passive, both of which we will cover in this article.

Explaining changes in tone.

As a neurological disorder, the effects of cerebral palsy originate from damage caused to certain parts of the brain. Depending on the area of the brain that is affected, a child’s muscles and tissues can become either hypertonic (high muscle tone) or hypotonic (low muscle tone). His ability to move properly will be affected as well. Once the child cannot move properly, he will develop compensatory movements, which in turn will lead to increased muscle tone.

There are two processes which are taking place in the brain. The first one is called irradiation, and the other one is called concentration. Irradiation is the process when all the cells are employed for one particular movement. This also includes cells which are not necessary for the function. The concentration process starts when we are becoming acquired with the necessary movement or function. This is when only the cells which are needed to work are working. If a child cannot move properly, he is struggling to perform functions anyway. Therefore, the process of irradiation is taking place. This is when a child will have increased muscle tone. During development, a child starts off by learning how to roll, then sit up, turn onto his knees, and then crawl. This process takes place in a certain order so that a child’s trunk and extremities will be adequately prepared for the different functions.

This process is important because the trunk (also known as the body’s core) acts as the “king” of the body. If a child does not have well-developed trunk control, his tone will increase because of the effort he has to put into keeping his balance, while performing certain tasks with his limbs.

Applying stretches in an active way.

Now, I know that my discussion is going to cause a lot of debate, but it is not my goal to start an argument on this issue. In fact, personally I am in favour of stretching. But, I think that stretching has to be done actively (i.e. with the child’s participation), and not in a passive way (i.e. when you stretch a child and he does nothing). During this “‘passive’ stretch” his brain does not learn movement or function, since he is not actively participating in the task at hand. Moreover, for the body this is an invasion and the brain and nervous system start to fight this invasion.

As a result, the muscle tone can increase more over a certain period of time. In other words, the results of the treatment will not be long-lasting.

So when stretching is being applied in practice, we need to remember that the child has to be an active participant. It means that he should not just work to grab his hand or leg to stretch, but that he needs to be educated in how to perform functions such as rolling, crawling, standing and walking--which are all, in fact, active stretches. During the stages of “normal development,” a child stretches his body as he works his way through each function. His brain learns new movements through his discovery of the world. This is how a child learns to move correctly using every part of his body, which will lead him to develop proper tone and function. A child with cerebral palsy is no different, which is why we need to consider these key components when guiding him through the development process.



Steps to take.

With these differences in mind, there are many tips that you may wish to consider in regards to your child’s treatment. One thing to consider is that your child’s stretches should always start with the trunk. Every limb works in conjunction with the rest of the body, so they cannot be exercised on their own. When the trunk has been introduced to fluid, rotational movements as a part of regular function, your child’s tone will follow and gradually improve. Then, once the tone has been released from his trunk, you will be able to teach your child how to roll properly. This will allow him to progress onto the next stages of regular development.

Like we’ve discussed before, it is important to avoid exercises that do not have a real purpose behind them. This is what differentiates an “exercise” from a “function.” In real life, we do not stand or roll without reason; we perform the actions with a certain intent in mind. So, when you work with your child, give him a functional goal, for example: we are going to crawl to the table to have lunch, etc.

In learning these steps alongside your child, you will lower his tone, improve his movement and help him realize just how much he can accomplish.

For more articles like this, visit http://www.enabledkids.ca/

Fans of The Sky's the Limit

As we’ve already discussed, cerebral palsy is a designation which covers many symptoms. In medical terms, it is not attributed as a disease or genetic disorder, but characterized as a condition with several possible causes. Whether congenital or acquired, cerebral palsy occurs when certain parts of a child’s brain has been damaged, affecting his ability to function, communicate and control his movements. Since the brain acts as the control centre for the nervous system, this will also lead to changes in his cognitive and sensory development. For a child, this many first become evident from his clenched fists and hypertonic muscles affecting either the limbs, trunk, or one side of the body. He will throw himself backwards when touched on his back, instead of putting his head forward when raised up from his hands. Also, the child may not trace objects, roll to both sides, or he might use one side more than the other. Parents are often the ones who watch their child the most, and notice when something is wrong.

As parents continue learning about their child’s condition there are several things that they need answers to, and the prospects for their child’s development is one of the main issues that may arise. Having worked in rehabilitation for over 20 years, I’ve had many parents asking us: Is cerebral palsy curable? My answer to that question is that it really depends on each child’s specific development, stage of condition.

Now, I know that I am going to cause a lot of debate here, but it is not my goal to argue about this issue. Instead, I would just like to show everyone my standpoint on this issue based on my years of experience and practice in the field. First, to tackle this issue we need to determine that every case of CP is different and can vary from being really mild to severe. When dealing with extremely severe cases, then I agree: there is no cure. Can we improve their ability to function, and bring them as close to independence as possible? Yes we can, when we give them the right approach and treatment. However when we’re dealing with certain mild cases, then there is the possibility for the condition to be cured—if caught on time and dealt with in the right circumstances.

How is this possible? Well, until a child turns one year old his development is still in its early stages. He starts to learn how to roll, crawl and stand, which are huge first milestones in his progress. By doing this, the child is starting to discover the world and open himself to new experiences. When a child is diagnosed with CP during this time period, he will not have had time to form improper functions (movements, communication) to compensate for his condition. Since he has not begun the subsequent cycle of disability and loss of independence which often occur in children with neurological disorders, you have the opportunity to take the child and guide his learning. When given the appropriate methods and appropriate stimulation, his brain will form new functional pathways. This is something called: brain neuroplasticity, and since the pathways are in their developmental stages, it is very possible to develop your child and help him accomplish independence.

So how can we do this? If we get into the specifics and talk about spastic cerebral palsy, we need to consider how hyper tone develops in a child’s body. When a child’s muscle tone is increasing, this does not allow proper function to take place. Consequently, this leads to compensation in his movements and begins a vicious circle affecting his mobility. Once a child learns to move in the appropriate way, he can then progress on to the normalization of function. In my opinion, if a child can move, then he can learn. As a physiotherapist, I have seen many cases progress to a point where a child doesn’t even appear to have a condition after treatment has finished (watch Sean or Katerina’s treatment). So, if a child has achieved normal tone and normal function, why should he be aware of a condition that is no longer affecting his life? Again, I am highlighting that each child has to be seen as an individual with his own condition, and that not everyone can work out of it to such a degree. But for years, we have seen children brought out of their disorders, and today these certain individuals can run, interact and play without any signs of cerebral palsy.

We need to remember that, first and foremost, therapy is something that happens all the time. A child’s learning doesn’t just occur in the treatment room; parents play a key role in their his improvement. If there is a possibility for your child to become independent, what he can achieve will depend greatly on how you guide his development. Keep this in mind, stay optimistic, and believe in what your child can accomplish.

For more articles, visit www.enabledkids.ca.

Understanding hypertonic cerebral palsy

Cerebral palsy is a catchall term used to describe a wide variety of symptoms originating in the brain. The brain is the information centre of the nervous system, which governs the entire body. Therefore, once it is affected it ultimately impacts a person’s daily life functions.

When a child is diagnosed, please keep in mind that it does not set anything for your child’s future. The diagnosis involves just a general idea of what symptoms may arise. However, there are many factors which have to be taken into account for each individual. For example, even the most minor cerebral palsy can become severe if treated improperly or not at all. As well, a child’s personality has a great impact on his condition. Therefore, one child’s cerebral palsy will differ from another. The prognosis for a child with cerebral palsy will also depend on how early the disorder is detected. The younger the child is, the more likely he will be able to create alternative pathways in his brain. In some cases, with appropriate treatment, the child will be able to walk away from his cerebral palsy completely.

Hypertonic Cerebral Palsy is a condition where all the muscles in the body become tense. A child with this condition will appear “stiff.” Muscle tone is something that is present in every person. However, when a child’s nervous system is affected, it sends abnormal impulses to his muscles. As a result, the muscles contract / become spastic. The condition of a child’s hands and legs (extremities) usually follow the trunk. The trunk is king—or in other words, the center of the body. Once affected, it starts a snowballing effect on the rest of a child’s physique: if a child cannot roll from side to side, the tone in the trunk will increase (i.e. become hyper tone). This leads to increased tone in the hands and legs, which ultimately hinders a child’s daily function.

To reduce or normalize tone, a child has to be taught how to move and function in a proper way. This is learning and not rehabilitating. Rehabilitation involves regaining skills. The child never had these functions in first place—therefore, he is learning. You can compare this with learning how to drive a car. Do you remember the first time you drove? How tense you were, and how much you sweated? A child with cerebral palsy is not excluded from these feelings. The skills which he is learning are acquired skills. They were not given to him during the stages of his development. When a function becomes part of his daily interaction, he will begin to use his body and extremities in the appropriate manner. When learning to crawl for example, a child will start to put weight on his legs and hands. If he is taught to roll, he will begin to develop normal tone in his trunk. As he repeats these actions more and more, this normal, functional weight bearing will allow the tone to normalize. This will enable him to learn and perform a greater range of daily functions and movements.

Whether a child is learning to eat, use the washroom, or dress himself, these functions are necessities for daily living. They are not exercises, but practice for real-life activities. He needs to know how to do these tasks, and that is what we, as therapists, aim to achieve.

By understanding your child’s condition, his learning process and the chain reactions which occur, we will enable him to learn, grow and develop independence in his everyday life.

For more articles, visit www.enabledkids.ca.

Don't wait to treat your child

Elaine, the grandmother of 3-month-old Debbie, called me regarding her granddaughter’s condition. Concerned, she described to me that Debbie was not turning her head to the right side. She did not grab things with her right hand, and did not move her right leg. In addition, when picked up by her hands, she was pulling herself back, and did not try to hold her head in an upright position.
Her daughter-in-law consulted a paediatrician, and was promptly told, “There is nothing to worry about.” But Elaine, who grew up raising four children, knew that there was something wrong.
When the child was brought to me, I saw what Elaine had been talking about: Debbie had a “clenched fist” on her right side. She disregarded her right side as a whole: she did not want to turn her head, or move her right leg or arm. When she was pulled upwards from a lying down position, she did not tip her head forward.
All these are the first signs of cerebral palsy. Unfortunately not every paediatrician or physician is able to recognize them in their early stages. Thankfully for Elaine, she discovered it in time and we were able to reverse the effects of her granddaughter’s condition.
Development isn’t something that starts after a certain age. A child develops physically and mentally starting from pregnancy. This is why it is really important to talk to your child, and make him feel that he is a part of your life even before birth. Fresh foods (preferable organic fruits and vegetables) and fresh air are the best friends of your child. Remember that he deserves the best of what you can give him.
Once the child is born he begins to discover the world. His mental development is inseparable from his physical exploration. If a child moves—he learns. His discovery comes through touch (sensory development), speech and communication, and his daily function.
But if a child does not move, or is having difficulty reaching for an object, usually his parents are the first ones to do it for him. As a result of our “help,” he does not learn to do new things. In a way, we are discovering the world in his place, when it has to be opposite: he has to discover the world for himself, and by himself. We are here just to guide and assist his learning. This way we can teach a child to make his own decisions, and to discover the world on his own.
Life takes your child through the stages of development in a certain order with one goal in mind: to prepare him for the steps ahead. If you can see that your child is having difficulties achieving these milestones, this should ring an alarm for you.
Do not rely on the opinion of others. You are the ONLY person who really knows your child. Consult multiple child experts, and conduct as much research as possible. Look for a second or even third opinion. In some cases, look into therapies and additional services that may help your child.
The earlier you start up treatment, the easier it is to deal with the difficulties your child is facing. Stay positive. As a parent, you make all the difference in his development.

For more articles like this, visit www.enabledkids.ca.

Stem cell therapy holds key for battling bub

BABY Emma was just hours into her life when she started suffering seizures.

Eight months later and diagnosed with cerebral palsy, epilepsy and stalled mental development, her hope for a better quality of life is in the hands of European scientists.

Her family is hoping to raise $35,000 to take Emma to Germany to receive the latest stem cell treatment.

Her mother Doreen Deede told The Cairns Post her daughter struggled to swallow food, play with other children and even reach for toys.

"But there's hope with the stem cell treatment - it's not a miracle cure but it will just improve things for her," she said.

"Maybe she will even be able to speak or walk."

After complications during labour, Ms Deede barely had time to hold her newborn baby before doctors rushed her away for treatment.

"She was born all floppy and was a greyish-blue colour," Ms Deede said.

"She was not able to breathe and the doctors had to resuscitate her and so, she suffered some brain damage."

Just hours after the arrival of her first child, the Cairns single mother's life was thrown into turmoil, with Emma suffering seizures throughout her first night.

"Then when she was three or four months old she was diagnosed with cerebral palsy, epilepsy and her development is mentally delayed," Ms Deede said.

Having survived her tumultuous start, Emma now faces a new challenge to improve her future, with Ms Deede hoping to travel with her daughter to Germany next month to receive some of the latest stem cell therapy treatment.

The community has already banded behind mum and daughter to help raise the funds.

On Sunday, yoga-goers will stretch out their spines and open their wallets, performing 108 Sun Salutations at Knoff Yoga School from 7am.

In a final fundraiser, families will comb through clothes stalls, face painting and a petting zoo at a pre-loved toy sale at the Brothers Hockey Club in Calanna Park from 8am to 2pm on October 16.

While Emma's condition sees her struggle at meal times to swallow her food, play with other children or even reach for her toys, Ms Deede hopes the therapy will help her daughter gain some kind of independence as she grows older.

"I often think what kind of quality of life she will have in a wheelchair the rest of her life," she said.

"There are a lot of question marks."

At a cost of $10 those interested in participating in the 108 Sun Salutation event on Sunday can contact Joyce on 0429 322 896.

Further donations can be made by contacting The Cairns Post. Pledges will be passed on to Ms Deede.

Having the first signs of cerebral palsy doesn’t set your child’s future in stone

One morning, I received a call from a woman named Elena who wanted to ask us some questions regarding her two month old granddaughter, Debbie. Elena had noticed that when Debbie’s back was touched, she would arch her back and throw her head backwards as well. Her right arm was always clenched in a fist, and she did not move very much. Elena told us that she had already gone to a pediatrician, but had been told that these were not signs of anything serious. As a mother with three kids herself however, she knew that there was something wrong. Considering the signs she had described, I knew that we had to bring Debbie in for some treatment. Once the girl was brought in, I could see why Elena was concerned. Debbie’s right leg did not move as much as her left, and her right hand was always clenched. Her body was stiff and tense, and when we tried lifting her off the ground, she would not tilt her head forward like a child would usually do.

These may be the first signs of cerebral palsy. If a child does not follow an object with his or her eyes, or does not want to turn his or her head to one side or the other, this may also indicate that something is wrong. The same can be said if a child does not grab for things with his or her hands, or if he or she is delayed in rolling, crawling and sitting. Should this be the case, it is best to start your child’s treatment as early as possible.

In the first few months of life, a child starts going through the normal stages of development. He or she learns how to roll, sit up, crawl, and move his or her arms and legs. If a child misses one of these milestones however, it will have a snowballing effect on the rest of his or her progress. For example, if he or she is not learning to get up and sit, it will impair his or her trunk mobility. As a result, the head or legs will not be used as much and the child will be unable to crawl properly. If we address these issues before they hinder a child’s growth and progress, we can minimize the effect of the condition in his or her daily life to a point where it is undetectable. That is why today, Debbie is completely cured, running and playing just like any child.

In many situations, both the medical and therapy community use a child’s diagnosis as a label accompanied by the claim of “permanent disability.” Yet, I have seen individuals with cerebral palsy who are able to lead independent, fulfilling lives. As a parent, it is up to you to teach your child about the world and to guide him or her through any difficulties he or she may come across.

So, if you see any behavior that seems atypical for your child, take initiative. Don’t be afraid to ask questions, and gather as much information as possible. Go to more than one physician, and make sure to consult experts who deal with neurological disorders more often than your general pediatrician. Also, even if your child does get diagnosed, don’t let yourself doubt his ability to develop and become the best he can be. You must believe in your child’s abilities, and focus on making realistic goals and teaching him or her how to achieve them.

My philosophy is that there is no treatment, only life. That is why as a therapist, I believe that there are no exercises to learn, only function. When I have a patient, I only guide him or her during the function so that he or she will learn to do it independently. I also request parents to continue working with their child at home so that there is no disruption in the teaching and learning process. As a parent, don’t let anyone set your child’s future in stone, and remember: your child is capable of things no one can predict.

For more articles, visit http://www.enabledkids.ca

Spastic Hemiplegia Cerebral Palsy

I have a condition called (SHCP).
I got SHCP when I was 10 days old (27.12.10) when I had a bleeding to the right side of my brain so my CP affects the left side of my body.
My CP isn’t that bad as most cases where the person can’t walk, talk etc. So I am quite lucky, but it still affects me.
Sadly there is no cure for CP but it can be made stronger. The treatments I use every day and every night are my AFO’s (or splints). I wear them every day at school for 6 hours to get a good stretch and I also wear them at night to still get that good stretch but when I’m fast asleep. I don’t like wearing my splints at school because people always ask: ‘Why do you get to wear trainers?’ or ‘What is that thing on your leg?’
I also have to have cereal castings 3 times a year for 3 weeks which helps to get a good stretch and to help get my foot into a 90 degree angle.
Then, there are the Botox injections; they help relax the muscles in my leg. They hurt but I don’t mind going through pain if it is going to help me.
Then there are the moments of my life I have been dreading- the operations. I have been told many times by my friends and family that if I do have the operations that I be fine and safe and that the doctors know what they’re doing, but I’m scared of having operations because: I have a BIG fear of hospitals- I hate them! If the operation that I’ll need in the next year or so doesn’t work, it will have to be done again which I’m not going trough twice- no way. I would be in a cast for 6 weeks and using crutches (most people would think that is a good thing but I can’t use crutches and my leg would feel weird).There are so many other reasons but if I wrote them all down I would be here forever.
At my high school I am the only person with CP- scary? Yes! At school, I would have to say P.E. is my hardest subject because my CP lets me down, I’m slow at running, last in every race etc. In races when I hear times being called out before mine, they are usually very fast. When I ask my friends what they got it will be something along the lines of 15/16 seconds for the 100 meters and I got 26 seconds. It makes me feel angry and I feel like I want to just give up.

Hard to swallow

THIS WEEK WE LOOK AT THE DIETARY REQUIREMENTS OF CHILDREN WITH CEREBRAL PALSY AND THE NUTRITIONAL AND HEALTH CHALLENGES THEY FACE


Monday August 09 2010

IN THE second week of addressing nutrition in children with special needs, we look at the dietary challenges faced by parents of children with cerebral palsy.

Cerebral palsy describes a group of disorders of the development of movement and posture, which limits activity.

Children can have varying symptoms including loose muscle tone, jerky movements of limbs, unsteadiness/shakiness, poor balance and an inability to hold objects steady which can make feeding difficult.

One of the main challenges facing children with cerebral palsy is malnutrition caused by either under-nourishment or over-nourishment. Poor nutrition can lead to stunted growth, delays in brain development, and low energy levels. It is advised that children with cerebral palsy are monitored by a dietitian.

Many children with cerebral palsy have eating, drinking and swallowing (EDS) difficulties, which can cause eating to be slow — some children with cerebral palsy can take 15 times longer to eat than children without the disorder. In severe cases, being unable to swallow can cause food to enter the lungs which can lead to frequent chest infections and pneumonia.

THE CHALLENGES

Children with cerebral palsy can have problems moving their mouth muscles; having poor tongue thrust, control and lip closure affects feeding. It can also results in loss of calories as a result of food and drink being spilled. Another feeding difficulty is the result of sensitivity to touch around the mouth and face. Some children with cerebral palsy may not like the touch of food or even a teat, a spoon or a hand.

Children with cerebral palsy often experience severe heartburn (gastroesophageal reflux). Self-feeding can be difficult, too, because they may be unable to use feeding utensils such as forks, spoons and cups.

Dietitians advice offering smaller meals throughout the day. This ensures your child gets more nutrition and reduces the stress for your child and yourself.

IMPORTANT FOODS

Fibre can play an important role in the diet of cerebral palsy sufferers as it helps alleviate constipation, to which children with cerebral palsy are susceptible.

This is caused by a lack of fluid and/or fibre, poor muscle tone and insufficient activity. Try to include a variety of high-fibre foods in your child’s diet (such as wholegrain cereals and breads, fruit and vegetables) and increase their fluid intake.

To prevent the risk of osteoporosis include foods high in vitamin D and calcium, such as milk, cheese, yoghurts and green leafy vegetables, such as spinach.

Avoiding foods that are high in fat and sugar (especially fried foods, crisps, chocolate, ice-cream, biscuits, cakes and sugary drinks) is very important for children with cerebral palsy for two reasons.

Firstly, limited physical activity is an issue faced by many cerebral palsy sufferers, which means they are more likely to become overweight and excessive weight can hinder children learning to walk. It can affect wheelchair-bound children’s mobility, making it more difficult for them to move from their wheelchair to bed, the toilet or the car.

Secondly, tooth decay is often a problem for children with cerebral palsy because of their diet, medication or gastroesophageal reflux. This can lead to greater difficulty with feeding as a result of pain and discomfort caused by tooth cavities, so foods high in sugar should also be avoided.

Children with severe feeding difficulties are an exception. In this case a dietitian may recommend foods that are high in protein and calories and, perhaps, the use of nutrition supplements to help prevent malnutrition. (See box below for ways to increase your child’s calorie intake.)

If you have any concerns about your child’s diet and nutrition it is important to speak to your GP or dietitian who can advise you on the best way to ensure your child is getting all the nutrients and calories they need. A dietitian’s recommendations may include changing the normal texture of food by chopping, grinding or pureeing and it may be necessary to thicken your child’s drinks.

For further information or to find a dietician in your area visit www.indi.ie

ZACH ANNER, 26, generated a buzz in the States earlier this year in his audition for Your Own Show, a reality series produced by Oprah Winfrey. Anner, who has used a wheelchair since the age of five, explained he had cerebral palsy, “the sexiest of the palsies”. He didn't win a place on the show but millions of viewers gave his zany humour the thumbs up by voting for him.

MICHAEL KUTCHER, Hollywood star Ashton Kutcher’s twin brother, was born with cerebral palsy. The twins grew up in the cornfields of Iowa and Ashton was Michael’s self-appointed protector. “That was a big part of my life,” Ashton recalls, “kind of looking out for my twin.”

The Effect of Oxygen on the Brain.

On the back of the previous post concerning Hyperbaric Oxygen administration, perhaps we should take a look at the effect of oxygen on the brain and ask whether research should not focus upon how the oxygen is delivered.  How many of our children have suffered further brain injury through the direct administration of enriched oxygen? There is a good preventative lesson in this report.
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The current practice of administering 100 percent oxygen to children, to prevent brain damage caused by oxygen deprivation, may actually inflict additional harm, researchers at UT Southwestern Medical Center have found.

Brain damage caused by oxygen deprivation, known as hypoxic-ischemic brain injury, is one of the most common causes of death and long-term neurological damage among infants and children. This can happen during birth trauma, near drowning and other crises.

The UT Southwestern researchers found that mice treated with less than a minute of 100 percent oxygen after a hypoxic-ischemic brain injury suffered far greater rates of brain-cell death and coordination problems similar to cerebral palsy than those allowed to recover with room air.

"This study suggests 100 percent oxygen resuscitation may further damage an already compromised brain,"  said Dr. Steven Kernie, associate professor of pediatrics and developmental biology and senior author of the study, which appears in the July issue of the Journal of Cerebral Blood Flow & Metabolism.

Most of the damage involved cells that create myelin, a fatty substance that insulates nerve cells and allows them to transmit electrical signals quickly and efficiently. Infants have much less myelin than adults; as myelin develops in children they become more coordinated. Areas of the brain with dense areas of myelin appear white, hence the term "white matter."

"Patients with white-matter injuries develop defects that often result in cerebral palsy and motor deficits,"  Dr. Kernie said.

Myelin comes from cells called glial cells, or glia, which reach out and wrap part of their fatty membranes around the extensions of nerve cells that pass electrical signals. The brain creates and renews its population of glial cells from a pool of immature cells that can develop into mature glia.

In their study, the researchers briefly deprived mice of oxygen, then gave them either 100 percent oxygen or room air, which contains about 21 percent oxygen, 78 percent nitrogen and 1 percent other gases.

After 72 hours, mice given 100 percent oxygen fared worse than those given room air. For example, they experienced a more disrupted pattern of myelination and developed a motor deficit that mimicked cerebral palsy. The population of immature glial cells also diminished, suggesting that the animals would have trouble replacing the myelin in the long term.

"We wanted to determine whether recovery in 100 percent oxygen after this sort of brain injury would exacerbate neuronal injury and impair functional recovery, and in these animals, it did impair recovery," Dr. Kernie said. "Our research shows even brief exposure to 100 percent oxygen during resuscitation actually worsens white-matter injuries."

Dr. Kernie said adding pure oxygen to the damaged brain increases a process called oxidative stress, caused by the formation of highly reactive molecules. The researchers found, however, that administering an antioxidant, which halts the harmful oxidation process, reversed the damage in the mice given 100 percent oxygen.

"Further research is needed to determine the best possible concentration of oxygen to use for optimal recovery and to limit secondary brain injury," Dr. Kernie said. "Research is now being done to determine the best way to monitor this sort of brain damage in humans so we can understand how it correlates to the mouse models. There are many emerging noninvasive technologies that can monitor the brain."

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Interesting isn't it? I wonder if they want to know why this happens?

When we try to administer high concentrations of oxygen to the brain, we actually cut the supply of oxygen the brain actually recieves. This is because high concentrations of oxygen act to constrict the cerebral arteries and veins. Constricted veins carry less blood and as blood carries oxygen, the individual concerned, who might already be in oxygen debt, has his oxygen supply further compromised.

Exactly the same problem is seen in epilepsy, which whether caused by pathology or physiology is a reflexive response to a compromised oxygen supply. The first thing a doctor will do is to supply the individual with oxygen, which very often just produces a bigger, better and more prolonged seizure! They then have to administer massive doses of anti – epileptic medication to undo the damage they have done through administering oxygen and to bring the seizure under control.

So what should be done instead of administering oxygen?

There is a great deal of research, which suggests that carbon dioxide is a good solution to this problem. The brain reacts to higher than normal levels of CO2 by dilating the cerebral arteries and veins. Dilated arteries carry more blood and as I previously pointed out, more blood = more oxygen. Obviously the timing, level and concentration of CO2 administration would need to be carefully controlled, but there is research, particularly with regard to epilepsy that CO2 could provide answers to some serious problems. http://www.medicalnewstoday.com/articles/73558.php is a good source just for starters!

So, in summary, the evidence suggests that we should completely review our methods for delivering oxygen to the brain. The direct route of direct administration of oxygen, actually produces the opposite effect to that which is desired and can actually make oxygen deprivation worse, thereby exacerbating the potential for brain injury and worsening neurological symptoms like epilepsy. We need to devise a treatment whereby CO2 enriched air can be administered thereby helping to turn on the brain's own natural anticonvulsant systems and in turn affecting the cerebral vascular system so that it is able to deliver oxygen as necessary. In this way we could not only prevent the occurrence of some types of brain injuries, but we could help to ameliorate the symptoms of those already suffering the consequences of neurological damage.

One thing is certain though, no one should take it upon themselves to administer CO2 enriched air to their child or to anyone else. This should only be done under the guidance of someone who is suitably qualified.

Gameworld: Motion games broaden uses beyond exercise

By John Gaudiosi
Reuters
Thursday, July 8, 2010; 6:30 PM

RALEIGH, North Carolina (Reuters Life!) - Ever since Nintendo launched the Wii, gamers have been interacting with characters and working out with virtual trainers in titles like Electronic Arts' "EA Sports Active" or Ubisoft's "Your Shape."

Nintendo is even encouraging families to exercise together with "Wii Games: Summer 2010," a national tour that kicks off in Jersey City, New Jersey on July 16 with Olympic gymnast Shawn Johnson serving as an ambassador for the competition.

Now researchers, scientists and game developers are using Nintendo's console for many other health-oriented applications, and in some cases are getting millions of dollars in grants to dream up new technologies.

A recent gathering of over 400 top minds at the sixth annual Games for Health Conference in Boston found innovative new ways that video games with motion-sensor controllers are being used to help doctors and patients.

Through a grant from the National Institute of Health, Red Hill Games and the School of Nursing at the University of California San Francisco are using Wii technology to create games that help people with Parkinson's disease improve their balance. One called "Rail Runner" requires patients to stand up and sit down to operate an old-fashioned railroad hand cart.


"Most of these patients are in their 70s and 80s, and they really love these games," said Bob Hone, creative director at Red Hill Studios. "They really want something that's going to address their disease, and what's different is these games are designed specifically for them."

Red Hill is incorporating similar Wii technology into games to help improve gait and balance in kids with Cerebral Palsy.

"These kids sometimes have physical challenges, so we've taken that into account to make games where they feel like they're walking and they get to the finish line successfully," said Hone.

The Sky's the Limit

Death Valley Jack runs for Cerebral Palsy Care

The marathon runs have helped Jack to support local charities and he has raised over £100,000 since his running career began. In 2010 he will be supporting Kent organisation Cerebral Palsy Care of Cliffe Woods.


“The work Cerebral Palsy Care of Cliffe Woods do is amazing in enriching the lives of children affected by Cerebral Palsy. The staff are so dedicated to the kids and it’s an honour to do what I can to help them in their work. Seeing how the money raised benefits the children is motivation enough for me when I’m running.”

Jack will be supported in Death Valley by a crew of six including his loyal wife Megs. The crew van will travel alongside Jack to keep him motivated and hydrated.

Supporters can follow Jack’s progress through video and photo updates on facebook by becoming a fan of his official page ‘Death Valley Jack’ and helping Jack get more fans than Usain Bolt. Seven Seas will be incentivising supporters to encourage their friends to join by donating money each week to Cerebal Palsy of Cliffe Woods if the Facebook group reaches set fan number targets.

Jack and his support crew will also tweet on his race progress via @deathvalleyjack from July 11th.

For more information on Cerebral Palsy Care of Cliffe Woods visit www.cpckent.org. To make a donation visit Jack’s Just Giving page www.justgiving.com/jack4cerebralpalsycare.

Equipment helps children walk independently

New equipment donated to Adventist Paulson Pediatric Rehabilitation Center is helping children with physical limitations improve their quality of life. The universal exercise unit, a device used to help children learn to walk independently, is expected to benefit countless children with cerebral palsy and other neurological disorders.

Four-year-old Owen Chaidez, the first patient to use the technology, already has made remarkable progress improving his limited range of motion; the Downers Grove boy cannot walk due to arthrogryposis multiplex congenita, a disorder characterized by reduced mobility of multiple joints. Owen's arms and legs have limited range of motion and he has undergone therapy at Adventist Paulson Pediatric Rehab since he was two weeks old.

"Physically, he's gained so much range of motion in just a few weeks," said Maggie Chaidez, Owen's mom. "But the emotional gains have been just as incredible. Instead of rolling on the floor to get where he needs, now he wants to walk all the time. He's becoming more independent. Between visits to Paulson, he constantly asks when we're going back there."

By increasing strength and range of motion, isolating the weakened muscle groups, and eliminating gravitational forces on the weak muscles, the exercise unit improves balance and coordination, promotes motor skills and enhances a child's self-confidence. The design concept is based on technology originally invented to counteract the negative effects, such as muscle atrophy and osteoporosis, experienced by astronauts due to lack of gravity. The unit counteracts the force of gravity that prevents weakened muscles from performing.

The unit is used in two different ways. First, a treatment bed or chair is used with a system of pulleys and suspensions with the primary goal of improving strength, active range of motion, and muscle flexibility. Alternatively, a suspension system used with a belt and elastic cords (dubbed the "spider cage" by the pediatric patients who use it) helps children achieve gains in balance, coordination and function. The child wears a belt hooked into bungee cords that suspend and support the child in the middle of the cage. This provides just the right amount of support needed to allow the patient to perform exercises virtually independently, which aids sitting, crawling, standing, walking, climbing and jumping.

Because children with neurological disorders often lack muscle tone, coordination, strength and balance, they often try to perform a specific movement using their upper and lower extremities simultaneously. The UEU, along with specific exercises performed in it, allows the therapist to re-train the child to isolate one extremity from the other and move it independently, helping develop a normal gait and, eventually, learn to walk on their own.



"This equipment has allowed us to do intensive therapy with Owen," said his physical therapist, Carrie Crozier-Arena. "It's a huge help to me because it supports him, freeing me to concentrate on his individual muscle movements instead of having to hold him in place and work his muscles at the same time."



The equipment was donated to the rehab center by the Burr Ridge-based The Lazzara Family Foundation, founded by Philip and Antoinette Lazzara in 1984 to support nonprofit organizations in the areas of education, health care, and human services. The foundation donated $6,150 for the equipment, accessories and employee training.



"We are pleased to support the amazing children who rely on Adventist Paulson Pediatric Rehabilitation Center and its dedicated team of therapists through our grant program," said Jack Lazzara, on behalf of The Lazzara Family Foundation. "We believe it's important to invest in our local communities to provide opportunities for improving the lives of others and we're delighted that Owen and his friends are benefiting so greatly from this new equipment."



Hinsdale Hospital Foundation is seeking another $10,000 for additional training and specialized full-body suits used in conjunction with the unit in order to expand its use to bigger children who need to wear larger size suspension suits.



"We're extremely grateful to The Lazzara Family Foundation for their generosity," said Susan King, executive director of the Hinsdale Hospital Foundation. "Our hope is that their seed grant will inspire additional donations allowing us to serve even more children in our community."

Golfer with cerebral palsy proves to be inspirational

Teens turn Wii remote into physical therapy tool

BY LESLIE BIXLER • Staff writer • May 13, 2010

Andrew Nichelson, a student at Ross High School, and Tiffin Columbian students Seth Sholl and Cody Semer came up with the idea as a senior project for the Tech Center's Computer Communications Network Technician program.

"We modified a Wii mote and turned it into a mouse," Sholl said, adding that they added Velcro straps to secure it to a person's wrist.

Originally, the teens thought to create a variant of a data glove used for gaming. But they turned it into a medical device after talking to Sholl's father, a physical therapist. Sholl said it ended up being more convenient and less expensive to go that route.

Semer said they connect the Wii remote to a computer through Bluetooth signals. The signals are emulated as mouse movements on the screen. He said the program is almost like a game, but tests a person's movement capabilities.

"We're hoping people can use this at home, and the program could send information to an occupational therapist," Semer said.

This would help people with cerebral palsy and people who have had a stroke, the students said. It could also help slow down muscular sclerosis.

"We incorporated three dimensions with the project to test depth perception and ataxic cerebral palsy," Sholl said.

Semer said the project is still not complete.

"We had the project done for state (competition), but we're thinking about taking it further," he said.

They worked with Floyd Collins, their instructor; Terry Ritchie, another instructor; an instructor at Terra Community College; and an occupational therapist at Bellevue Hospital.

They also credit fellow students for help.

"They worked very hard on this project, and we came into the school on weekends while other students where home relaxing and enjoying the weekend," Collins said. "The biggest hurdle for the team was overcoming their fears of presenting the project to the judges.

"They learned more from this project than can be taught from books or the classroom. They learned what it is to be a team and working for a common goal, relying on each other's strengths and overcoming their weaknesses. I am very proud of each of them, and I hope they take what they learned from this and keep going."

Last month, the teens went to Columbus for a business and technology competition and took third place for their project.

They were the first team from the Tech Center in the Tech Prep Showcase in March at Terra Community College.