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Disclaimer: The author of the content below is not a medical professional and does not have any medical training. As such, the contents on this page, including text, graphics, images, and any other material are for informational purposes only. The Content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Our full medical disclaimer<\/a> can be found by clicking here<\/a>.<\/span><\/em><\/p>\n James was diagnosed with quadriplegic cerebral palsy on September 14th<\/sup>, 2010 by his neurologist. We didn\u2019t actually find out about the diagnosis until January 12, 2011…almost four months later. The neurologist never mentioned it the three or four times we saw him since he made the diagnosis. Stacy only found out about it because she happened to be reading through James\u2019 medical records. We were obviously very upset. Why were we not told about this? How can a doctor forget to tell us that he diagnosed our child with cerebral palsy!?<\/p>\n It just so happened that we had an appointment to see a different neurologist the following day (January 13th<\/sup>) at a hospital closer to home. It was such a good appointment that we decided to leave James\u2019 current neurologist and start seeing this new one.<\/p>\n Once we learned of James\u2019 quadriplegic cerebral palsy diagnosis, we started doing our research, trying to find out as much as we could. We had so many questions.<\/p>\n In this post, I will aim to answer the most common questions asked when a parent finds out their child has cerebral palsy. Because this is quite a long post and I don’t expect everyone to read it from top to bottom, I wanted to make it a bit easier on you. If there is a specific question you are looking to have answered, simply click on the question below and you will be automatically taken to the answer to that question. If there is an additional question you would like to have answered, simply click the back button on your browser and you will come back to the list of questions.<\/p>\n What is cerebral palsy?<\/span><\/strong><\/a><\/p>\n What are the symptoms of cerebral palsy?<\/span><\/strong><\/a><\/p>\n What causes cerebral palsy?<\/span><\/strong><\/a><\/p>\n Can cerebral palsy be prevented?<\/span><\/strong><\/a><\/p>\n Are there different types of cerebral palsy?<\/span><\/strong><\/a><\/p>\n How will cerebral palsy affect his (or her) life expectancy or quality of life?<\/span><\/strong><\/a><\/p>\n Is there a cure for cerebral palsy?<\/span><\/strong><\/a><\/p>\n What treatment or therapy options are available for cerebral palsy?<\/span><\/strong><\/a><\/p>\n <\/a><\/p>\n <\/p>\n The United States Centers for Disease Control and Prevention (CDC)<\/a>, defines cerebral palsy, or CP for short, as \u201ca group of disorders that affect a person\u2019s ability to move and maintain balance and posture. CP is the most common motor disability in childhood. Cerebral <\/em>means having to do with the brain.\u00a0Palsy<\/em>\u00a0means weakness or problems with using the muscles. CP is caused by abnormal brain development or damage to the developing brain that affects a person\u2019s ability to control his or her muscles.\u201d<\/p>\n KidsHealth.org<\/a> further explains that \u201cCP often is caused by brain damage that happens before or during a baby\u2019s birth, or during the first 3-to-5 years of a child\u2019s life. Brain damage can lead to other issues like sight, hearing, and learning problems.\u201d<\/p>\n In James\u2019 case, his CP was more than likely caused by a stroke he suffered in utero<\/a>. This stroke also caused some of James\u2019 other issues such as vision and feeding.<\/em><\/p>\n <\/a><\/p>\n <\/p>\n It\u2019s important to note that the symptoms of CP vary widely from one person to the next. Mayo Clinic<\/a> lists the following symptoms of cerebral palsy, but not all of the symptoms will affect each individual:<\/p>\n James can check off most of the symptoms in the above list. He has low muscle tone, which means that he has to has to put in more effort to get his muscles to work properly than a normal person would. He exhibits twitches (tremors) and involuntary movements, but we associate this more with his seizures. I wouldn\u2019t say he\u2019s had delays in reaching motor skills milestones; I\u2019m not sure if he ever really reached them. He used to be able to push up with his arms and lift his head, but he hasn\u2019t done that in several years. Again, we attribute this to his seizures. We feel that the epilepsy robbed him of his ability to do this.<\/em><\/p>\n Because James has quadriplegic cerebral palsy, or simply quad CP, both arms and both legs are affected. He will never be able to walk and will always require a wheelchair. He will also never be able to operate a wheelchair on his own.<\/em><\/p>\n James has no suck swallow reflex. He is unable to eat by mouth and is fed by g-tube<\/a>. He is also unable to swallow so we frequently suction secretions from his nose and throat. Because of his inability to manage his own secretions, he is prone to aspiration pneumonia.<\/em><\/p>\n James has never been able to talk and we don\u2019t expect him to. Stacy and I have always wondered what his voice would sound like if he was able to talk. He does have a few sounds that he makes, so I guess he has his own language, but we haven\u2019t figured out how to translate his \u201cwords\u201d yet.<\/em><\/p>\n And as mentioned above, James has seizures. He has been battling infantile spasms and epilepsy since he was in the NICU<\/a>.<\/em><\/p>\n <\/a><\/p>\n <\/p>\n The Mayo Clinic<\/a> states that \u201ccerebral palsy is caused by an abnormality or disruption in brain development, most often before a child is born. In many cases, the cause isn’t known. Factors that can lead to problems with brain development include:<\/p>\n We believe that the cause of James\u2019 CP was a stroke he suffered in utero<\/a>. After he was born, it was discovered that James has a blood clotting disorder called Factor V Leiden, which is a mutation of one of the blood clotting factors in the blood. This mutation increases the chance of developing abnormal blood clots. Although it was never mentioned, I\u2019ve always wondered if it was possible that the Factor V Leiden disorder caused a blood clot, which in turn caused James\u2019 stroke<\/a>. Because Factor V Leiden is inherited, both Stacy and I were tested. James inherited it from his mommy and Stacy inherited it from her dad.<\/em><\/p>\n If you do a Google search for \u201ccerebral palsy\u201d or \u201ccauses of cerebral palsy\u201d you might notice that many of the links that come up in the search are for legal firms. In some cases, cerebral palsy is caused during birth due to something that the delivering doctor did (or didn\u2019t do). We did have an attorney look over James\u2019 medical records to see if we had a case against the doctor or hospital, but after he reviewed the records and spoke with the delivering doctor, he did not think James\u2019 CP was caused by hospital or doctor negligence. Because of James\u2019 in utero stroke<\/a>, we pretty much knew that was the cause of his CP, but we figured it wouldn\u2019t hurt to have a lawyer familiar with these cases look things over.<\/em><\/p>\n <\/a><\/p>\n <\/p>\n Unfortunately, there is no sure-fire way to prevent your son or daughter from having CP. There are, however, ways an expecting mother can reduce the risk of her child having cerebral palsy. WebMD<\/a> lists several things you can do limit the risk:<\/p>\n If you are planning on getting pregnant<\/strong>, these are some things they recommend:<\/p>\n If you are already pregnant<\/strong>, WebMD<\/a> recommends that you:<\/p>\n After your baby is born<\/strong>, a couple of important steps can help ensure your newborn is on the right track.<\/p>\n Because cerebral palsy can sometimes happen when an infant or small child gets a head injury that keeps his or her brain from developing the right way, WebMD<\/a> offers the following tips:<\/p>\n Even if you follow the above recommendations from WebMD<\/a>, there is no guarantee that your child won\u2019t have cerebral palsy, but following the above guidelines will help limit the risk. In James\u2019 case, it was something that just happened. It was kind of like a chain of events that was out of our control. We believe (although it hasn\u2019t been proven) that his Factor V Leiden blood clotting disorder caused him to have a stroke in utero<\/a> which in turn caused his cerebral palsy.<\/em><\/p>\n <\/a><\/p>\n <\/p>\n Yes, there are actually four main types of cerebral palsy:<\/p>\n Spastic cerebral palsy<\/span><\/strong> is by far the most common type of CP, affecting 70- to 80% of those with cerebral palsy. Individuals with spastic CP have increased muscle tone, which means that their muscles are stiff, and as a result, their movements can be awkward. Spastic CP can be further broken down into three types, depending on which parts of the body are affected.<\/p>\n Spastic diplegia\/diparesis Spastic hemiplegia\/hemiparesis Spastic quadriplegia\/quadriparesis People with dyskinetic cerebral palsy<\/span><\/strong> have problems controlling the movement of their hands, arms, feet, and legs, making it difficult to sit and walk. The movements are uncontrollable and can be slow and writhing or rapid and jerky. Sometimes the face and tongue are affected, and the person has a hard time sucking, swallowing, and talking. A person with dyskinetic CP has muscle tone that can change (varying from too tight to too loose) not only from day to day, but even during a single day.<\/p>\n Individuals with ataxic cerebral palsy<\/span><\/strong> have problems with balance and coordination. They might be unsteady when they walk. They might have a hard time with quick movements or movements that need a lot of control, like writing. They might have a hard time controlling their hands or arms when they reach for something.<\/p>\n As you might have guessed by the name, a person with mixed cerebral palsy<\/span><\/strong> has symptoms of more than one type of CP. The most common type of mixed CP is spastic-dyskinetic cerebral palsy<\/span>.<\/p>\n As I mentioned at the beginning of this article, James was diagnosed with quadriplegic cerebral palsy. Looking at the above types of CP and their descriptions, James has a combination of spastic quadriplegia and dyskinetic CP. On the spastic quadriplegia side, both of his arms and both of his legs are affected. He has epilepsy (seizures). He has issues with vision, hearing and speech. Then on the dyskinetic side, he is unable to suck, swallow or talk.<\/em><\/p>\n <\/a><\/p>\n <\/p>\n This could be asked as two separate questions, but I think they go hand-in-hand so I put them together as one. CerebralPalsy.org<\/a> lists eight factors that are \u201cidentified as areas of concern which have the capacity to shorten the life span in cases of cerebral palsy.”<\/p>\n As CerebralPalsy.org<\/a> points out, \u201cthe higher the number of impairments<\/span>, the greater likelihood an individual\u2019s life expectancy will be impacted. A child with multiple impairments has multiple conditions for caretakers to properly manage.\u201d<\/p>\n James has multiple impairments (feeding, seizures, no suck\/swallow) that all need to be managed. Most of the time this is not an issue, but then there are times when he gets sick with respiratory issues that affect his feeding. In cases like this we need to manage two impairments simultaneously. It did take us a few years, but I think we (or should I say Stacy) has this figured out. Stacy has learned that when James has respiratory issues and has a hard time breathing, his belly sometimes gets distended and he can\u2019t handle his feeds like he normally does. Stacy has learned to vent his belly via his g-tube to let out excess air and switch him over to either straight Pedialyte or a mix of his normal formula and Pedialyte. She also slows down his feeds so instead of being fed over his normal 45 minutes, she might back it off to an hour and a half or two hours. As his breathing gets under control, she\u2019ll slowly work him back to his normal feeds.<\/em><\/p>\n The severity level<\/span> of impairments is a significant component in life expectancy calculations. CerebralPalsy.org<\/a> states that \u201csevere impairment will diminish the life expectancy of a child more significantly than moderate or mild impairment. Higher levels of impairment can indicate a more serious underlying injury or condition \u2013 more significant brain damage, for instance.\u201d They go on to say that \u201csevere cases of Cerebral Palsy can lead to early death in newborns, babies, infants, and toddlers. The more severe a condition, the more prone the child is to premature death. Of special concern for risk of premature death are children who experience severe spasticity, and children with quadriplegia or quadriparesis.\u201d<\/p>\n That last sentence is concerning to us as James is quadriplegic. They do not elaborate as to why, but I imagine that it has to do with lack of mobility and the complete dependence on others, which is discussed in the next paragraph.<\/em><\/p>\n When discussing mobility restrictions<\/span>, CerebralPalsy.org<\/a> says that \u201climited ability to move from one place to another, or to use both arms and legs successfully, increases a child\u2019s dependency upon others. Restrictions on mobility increase a child\u2019s dependence on caregivers. Such restrictions can also lead to other health problems which impact quality of life and life span. Those with physical impairment can also experience premature aging. Inactivity and lack of exercise can weaken the body and decrease immunity and cognitive function. Some children with Cerebral Palsy will use more energy to move than a child without Cerebral Palsy. The result is excessive wear on internal organs, including the heart.<\/p>\n They conclude by saying that “in general, the lack of upper extremity function, inability to propel wheelchair, inability to roll over, and inability to creep, crawl or scoot can be areas of concern.\u201d<\/p>\n James will always be dependent on others. Because he is quadriplegic, he is unable to move on his own. He will never be able to use a wheelchair on his own, or get into his chair when it\u2019s time to eat, or eat on his own.<\/em><\/p>\n Speaking of eating, feeding difficulties<\/span> is the next item on CerebralPalsy.org\u2019s<\/a> list. They state that \u201cdifficulty in feeding can lead to malnutrition, a condition that weakens the immune system and can lead to muscle deterioration.<\/p>\n “Children who are unable to self-feed are reliant on their caregivers, medical equipment, or both. They are likely to have oral motor functioning impairment, meaning muscles required to chew, swallow and communicate are unable to function properly. This impairment can lead to failure to thrive, choking, and aspiration, which then can cause pneumonia or other life-threatening conditions. Irritation from feeding tubes can lead to infections. Infections are serious if not treated carefully.<\/p>\n “Feeding issues can be mitigated by properly using feeding tubes or gastrostomy. Parents can work closely with a registered dietitian to manage the nutritious value, consistency and substance of diet, and learn ways to feed that reduce the child\u2019s risk of aspiration and pneumonia. Maintaining a healthy diet and weight optimizes health. Therapists may also work with the child to improve muscle control of the tongue, lips and bite.”<\/p>\n When James was born, it was determined almost immediately that he did not have a suck\/swallow reflex so they used feeding tubes when he was in the NICU<\/a>. He had NG- and NJ-tubes, both of which are inserted through the nose. He then had a PEG tube for his feedings and finally got a Mic-Key button (g-tube) for his feedings before he came home. His formula is delivered directly into his stomach through a feeding pump that is programmed with the rate and dose of his feeds.<\/em><\/p>\n James has been in the hospital more times than we can count with aspiration pneumonia, but this is not due to his feeding issues. This has more to do with his inability to suck\/swallow and manage his own secretions. We have to frequently suction his nose and throat to clear his secretions so that they don\u2019t wind up in his lungs and cause pneumonia.<\/em><\/p>\n Continuing on with CerebralPalsy.org\u2019s<\/a> list of things that can shorten the lifespan of those with cerebral palsy is seizures<\/span>. “Children who experience seizures, especially severe and frequent seizures, in addition to Cerebral Palsy are at risk for diminished life expectancy when compared to children who are without seizure.<\/p>\n “With the aid of a neurologist, parents can learn how to manage and properly medicate seizure activity. Medications must be monitored and changed often. The manner of weaning from one medication and replacing with another is extremely important with some medications. Care must be taken to prevent adverse drug interventions, especially when new medications are prescribed by other doctors.<\/p>\n “When meeting to discuss the child\u2019s seizures with medical practitioners, parents will need to provide information about how long the episodes typically last, what body parts are affected, the type of seizure, possible triggers, and how the child behaved during the seizure.\u201d<\/p>\n James has been dealing with seizures, infantile spasms and epilepsy pretty much since he was born. We believe he had a seizure while still in the NICU<\/a>, although the attending physician didn\u2019t think so. I wrote another blog post about seizures which can be found here (link will open in new tab).<\/em><\/p>\n Cognitive functioning<\/span>\u00a0refers to multiple mental abilities, including learning, thinking, reasoning, remembering, problem solving, decision making, and attention. According to cerebralpalsy.org<\/a>, \u201cintellectual disability occurs in roughly 30%-50% of children with Cerebral Palsy. Cognitive factors that contribute to diminished life span include: Presence and severity of intellectual disability; Inability to speak intelligible words; Inability to recognize voices; and inability to interact with peers. <\/strong>It is unclear whether reduced cognitive function itself is the cause of diminished life expectancy, or the sign of a more severe level of impairment.\u201d<\/p>\n That last sentence throws me a bit. I don\u2019t know how the inability to speak, recognize voices or interact with peers would affect life expectancy. It seems that those disabilities would fall more under quality of life, wouldn\u2019t they? James does not speak, and we are not sure if he recognizes our voices (or our faces for that matter), but I don\u2019t think that would shorten his lifespan.<\/em><\/p>\n Visual acuity<\/span>, or the ability to discern letters or numbers at a given distance, is another item on cerebralpalsy.org\u2019s<\/a> list that I am questioning. \u201cImpaired visual function is linked to diminished life span in children with Cerebral Palsy. Current studies are focused on determining whether the actual visual impairment is responsible for shortened life expectancy, or whether visual impairment is indicative of a separate brain injury that may be life threatening in itself. Some believe visual impairment may accompany severe cases of Cerebral Palsy, which combined might indicate a risk to life expectancy.\u201d<\/p>\n This is another item that seems like it falls more under quality of life than life expectancy. James has vision issues with one optic nerve that didn\u2019t fully develop, but I don\u2019t think that is going to shorten his life.<\/em><\/p>\n The last item on cerebralpalsy.org\u2019s<\/a> list is respiratory functioning<\/span>. Now this one makes sense. \u201cRespiratory functioning, as well as swallowing and chewing difficulties, is a factor in reduced life expectancy for children with Cerebral Palsy. Respiratory distress makes it difficult for the body to function and can lead to life-threatening heart conditions. Severity and frequency of respiratory infection is a significant factor. Difficulty in swallowing and feeding can lead to the inhalation of food particles. This can cause infection in the lungs or pneumonia, which are also of concern.<\/p>\n I mentioned earlier when discussing feeding difficulties that James sometimes has breathing issues and that he has been in the hospital numerous times for aspiration pneumonia. These episodes are not the result of inhalation of food, though. In James\u2019 case, he has no suck\/swallow reflex, cannot manage his own secretions, and needs to be suctioned to clear his airways of those secretions. Sometimes those secretions find their way into his lungs and cause pneumonia.<\/em><\/p>\n <\/a><\/p>\n <\/p>\n Unfortunately there is no cure for cerebral palsy (CP). At least not yet. But this might be changing. According to an article on CanChild.ca<\/a> written in 2017, \u201cthere are currently 12 clinical trials around the world using stem cells to treat CP. Stem cell transplantation is a regenerative therapy that has the potential to replace the damaged and non-fuctional cells in the the brains of CP patients, as well as to provide support to the remaining neurons and oligodendrocytes.\u201d<\/p>\n <\/a><\/p>\n <\/p>\n While there may not be a cure for cerebral palsy, there are many treatment and therapy options available that can help manage the symptoms of CP. These treatments and therapies will vary from person to person depending on the type of CP they have, the symptoms, and the severity of those symptoms.<\/p>\n The following list are just a few of the things that are available. This is by no means meant to be an exhaustive list. Work with your doctors and\/or teachers (if the individual is in school) to see what might be best for your particular symptoms.<\/p>\n Assistive Aids<\/span><\/strong><\/p>\n <\/p>\n Medications Anticholinergic MedicationsWhat is cerebral palsy?<\/span><\/h4>\n
What are the symptoms of cerebral palsy?<\/span><\/h4>\n
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What causes cerebral palsy?<\/span><\/h4>\n
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Can cerebral palsy be prevented?<\/span><\/h4>\n
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Are there different types of cerebral palsy?<\/span><\/h4>\n
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\n<\/span>In this type of spastic CP, muscle stiffness is mainly in the legs, with the arms less affected or not affected at all. People with spastic diplegia might have difficulty walking because tight hip and leg muscles cause their legs to pull together, turn inward, and cross at the knees (also known as\u00a0scissoring<\/em>).<\/p>\n
\n<\/span>This type of spastic CP affects only one side of a person\u2019s body.<\/p>\n
\n<\/span>Spastic quadriplegia is the most severe form of spastic CP and affects all four limbs, the trunk, and the face. People with spastic quadriparesis usually cannot walk and often have other developmental disabilities such as intellectual disability; seizures; or problems with vision, hearing, or speech.<\/p>\nHow will cerebral palsy affect his (or her) life expectancy or quality of life?<\/span><\/h4>\n
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Is there a cure for cerebral palsy?<\/span><\/h4>\n
What treatment or therapy options are available for cerebral palsy?<\/span><\/h4>\n
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\n<\/span><\/strong>There are many medications available to treat the symptoms of cerebral palsy. I will not list the actual medications here, but I will give a brief description of the six (6) categories of medicines that are typically used in the treatment of CP. It should go without saying, but please consult with your primary health care provider before giving any medications. This includes over the counter medications. With any medication, there is always a chance of adverse effects, side effects, or interactions with other drugs.<\/p>\n
\n<\/span>Medications in this category are typically used for people who have a nonspastic type of CP. Anticholinergics are used to treat muscle stiffness and uncontrolled movements like tremors and spasms. They can also be used to reduce saliva production and decrease secretions. James was on one of these medications to reduce his secretions. The trick was finding just the right dose so that his secretions were decreased enough to reduce the amount of suctioning required, but not too much that he was completely dry.<\/p>\n