Living with inflammatory brain diseaseLLiving with inflammatory brain diseaseLiving with inflammatory brain diseaseEnglishImmunologyChild (0-12 years);Teen (13-18 years)BrainImmune systemNon-drug treatmentCaregivers Adult (19+)NA2013-06-11T04:00:00Z​Susanne Benseler, MD;Manisha Sickand, MSc;Marinka Twilt, MD12.000000000000037.00000000000001034.00000000000Health (A-Z) - ProcedureHealth A-Z<p>For your child with inflammatory brain disease learn about the different health-care professionals they will interact with and some of the challenges they will face during their recovery.</p><h2>How will this disease impact my life?</h2> <p>Most families have a lot of questions regarding what their child can and cannot do during recovery and rehabilitation. There are no specific guidelines to follow when it comes to diet, sports or recreational activities since every child is different. However, you know your child best. Once you believe they have recovered enough mobility and understanding, they can return to their normal routine and activities. Nevertheless, these diseases, like other inflammatory brain disorders, do impact a child's life in many ways. For more information, please read the following pages:</p> <ul> <li><a href="/Article?contentid=1173&language=English">CNS Treatment</a></li> <li><a href="/Article?contentid=1127&language=English">CNS vasculitis: Lifestyle changes </a></li> <li><a href="/Article?contentid=1129&language=English">CNS vasculitis: Lifestyle changes for teenagers </a></li> <li><a href="/Article?contentid=1128&language=English">CNS vasculitis: Lifestyle changes for school-aged children </a></li> </ul><h2>Key points</h2> <ul> <li>Your child with inflammatory brain disease will interact with many different health-care professionals during their journey including a neurologist, rheumatologist and rehabilitation therapists.</li> <li>Full clinical recovery can range anywhere from two weeks to 24 months.</li> <li>Children often initially seem well in the first few months after diagnosis but full functional and physical recovery takes longer.</li> </ul><h2>Recovery and Relapse</h2> <p>The reported time to clinical recovery is variable and can range anywhere from two weeks to 24 months. Intensive rehabilitation is frequently required and many children return back to normal. However, this does not usually occur quickly. While many children appear well in the first several months, parents will notice that full, 100% functional and physical recovery takes much longer. Therefore, patience is a must as the road to recovery can be a long and bumpy one. Frequently reported issues include: </p> <ul> <li>Infections, especially of the gastrointestinal tract and respiratory tract </li> <li>Abnormal movements, muscle spasms and muscle weakness </li> <li>Memory loss, emotional outbursts and temper tantrums </li> <li>Seizures </li> </ul> <p>Understandably, the threat of a relapse for some patients is a real and scary one. Although we are capable of ridding the body of autoantibodies after the initial attack, we do not know whether they ever go away completely. Since we do not fully understand what leads to autoantibody production in the first place, it is difficult to predict with certainty whether the antibodies will ever return. Periodic measurements of the number of antibodies in the CSF are the most sensitive method to measure disease progression. However, repetitive lumbar punctures are hardly practical for an adult, let alone a child. Luckily, clinical presentation or blood titres are excellent proxies for CSF titres. It is for this reason that we suggest periodic blood testing alongside clinical monitoring by physicians and family members be used instead.</p><h2>Your health-care team </h2> <p>Various health-care professionals may be involved during the diagnostic work-up, treatment and rehabilitation periods. The following is a list of possible people that may help you and your family along this journey:</p> <ol> <li>Neurologist: doctors who have specialized training in diseases that affect the brain, spinal cord and peripheral nerves. As a result, neurologists are often the first specialists involved when your child presents with abnormal neurological symptoms.</li> <li>Rheumatologist: doctors who have specialized in rheumatology, a subspecialty that has expertise in inflammatory diseases. Examples of conditions that rheumatologists treat include lupus, vasculitis and arthritis. Some rheumatologists are experts in particular subsets of rheumatological conditions, including those that affect the brain. As a result, many of the experts in inflammatory brain disease are in fact, rheumatologists.</li> <li>Psychiatrist: physicians who have specialized training in conditions that affect the intangible functions of the brain, such as cognition, behavior and emotion. Many inflammatory brain diseases present with abnormal psychiatric or behavioural symptoms. The recovery process itself can also be quite difficult for patients. As a result, psychiatrists are often involved during the initial diagnosis and during the recovery period.</li> <li>Advanced practice registered nurses (APRN) and nurse practitioners (NP): nurses that have an advanced scope of practice and NPs are nurses that have completed graduate level training in particular specialty. APRNs or NPs who have specialized in brain disease are often your most trusted resource during the recovery process. They have a wealth of hands-on experience and can provide a great deal of support regarding questions about medications and what to expect during rehabilitation.</li> <li>Rehabilitation therapists: The following rehabilitations specialists all play integral roles in the rehabilitation process. Rehabilitation can take place in an acute care hospital where the child is initially admitted for disease management or a rehabilitation hospital where your child may be transferred following diagnosis. There are paediatric rehabilitation hospitals that actually specialize in the rehabilitation of children with neurological injuries. <span class="ms-rteThemeForeColor-2-0">These are often the best places for children to receive dedicated care and support:</span></li> <ul> <li>Occupational therapist: specialists who are trained to assess and treat difficulties in fine motor, thinking and swallowing skills. </li> <li>Physiotherapist: specialists who are trained to assess and treat changes in gross motor skills, mobility and pain. </li> <li>Speech language therapist: specialists who are trained to assess and treat changes in speech and communication. </li> </ul></ol><h2>Additional resources and support</h2> <p><a href="http://www.sickkids.ca/Research/Brainworks/Welcome/Welcome.html" target="_blank">BrainWorks</a></p>
Vivre avec une maladie inflammatoire du cerveauVVivre avec une maladie inflammatoire du cerveauLiving with inflammatory brain diseaseFrenchImmunologyChild (0-12 years);Teen (13-18 years)BrainImmune systemNon-drug treatmentCaregivers Adult (19+)NA2013-06-11T04:00:00Z​Susanne Benseler, MD;Manisha Sickand, MSc;Marinka Twilt, MD12.000000000000037.00000000000001034.00000000000Health (A-Z) - ProcedureHealth A-Z<h2>Quel impact cette maladie aura-t-elle sur ma vie?</h2> <p>La plupart des familles ont beaucoup de questions concernant ce que leur enfant peut ou ne peut pas faire pendant le rétablissement et la rééducation. Il n’y a pas de directives spécifiques à suivre en matière d’alimentation, de sports ou d’activités récréatives, chaque enfant étant différent. Toutefois, vous êtes la personne qui connaît le mieux votre enfant. Dès que vous avez la conviction qu’il a récupéré suffisamment de mobilité et de capacités de compréhension, il peut reprendre sa routine et ses activités normales. Néanmoins, ces maladies, comme d’autres troubles inflammatoires du cerveau, ont de nombreuses répercussions sur la vie d’un enfant. Pour en savoir plus, veuillez vous reporter aux pages suivantes:</p> <ul> <li><a href="/Fr/HealthAZ/ConditionsandDiseases/InflammatoryConditions/Pages/CNS-Vasculitis-Treatment.aspx">Vasculite du système nerveux central : Traitement</a></li> <li><a href="/Fr/HealthAZ/ConditionsandDiseases/InflammatoryConditions/Pages/CNS-Vasculitis-Lifestyle-Changes.aspx">Vasculite du système nerveux central : Changements de style de vie</a></li> <li><a href="/Fr/HealthAZ/ConditionsandDiseases/InflammatoryConditions/Pages/CNS-Vasculitis-Lifestyle-Changes-for-Teenagers.aspx">Vasculite du système nerveux central : Changements de vie pour les adolescents</a></li> <li><a href="/Fr/HealthAZ/ConditionsandDiseases/InflammatoryConditions/Pages/CNS-Vasculitis-Lifestyle-Changes-for-School-Aged-Children.aspx">Vasculite du système nerveux central : Changements de vie pour les enfants d’âge scolaire</a></li> </ul><h2>Rétablissement et rechute</h2> <p>Le temps qui s’écoule jusqu’au rétablissement clinique est variable et compris entre 2 semaines et 24 mois. Une rééducation intensive est souvent nécessaire et de nombreux enfants retrouvent une vie normale. Toutefois, ce retour à la normale n’est généralement pas rapide. Si de nombreux enfants vont bien dès les premiers mois, les parents constatent que le rétablissement fonctionnel et physique complet, à 100 %, prend beaucoup plus de temps. La patience est donc de rigueur. Le chemin vers le rétablissement peut être long et cahoteux. Quelques problèmes souvent signalés:</p> <ul> <li>infections, en particulier du tractus gastro-intestinal et des voies respiratoires</li> <li>mouvements anormaux, spasmes musculaires et faiblesse musculaire</li> <li>perte de mémoire, hyperémotivité et crises de colère</li> <li>crises d’épilepsie </li> </ul> <p>Chez certains patients, le risque de rechute est réel et préoccupant. Bien que nous soyons capables de débarrasser l’organisme des auto-anticorps après l’attaque initiale, nous ignorons si ceux-ci disparaissent jamais complètement. Étant donné que nous ne comprenons pas pleinement ce qui conduit à la production d’auto-anticorps, il est difficile de faire des prédictions fiables concernant le risque de réapparition de ces anticorps. La mesure périodique du nombre d’anticorps dans le liquide céphalorachidien (LCR) est la méthode la plus fiable pour suivre la progression de la maladie. Cependant, des ponctions lombaires à répétition, difficilement envisageables chez l’adulte, le sont moins encore chez l’enfant. Heureusement, le tableau clinique et le titrage dans le sang peuvent remplacer avantageusement les titres dans le LCR. C’est pour cette raison que nous suggérons de procéder plutôt à des analyses de sang périodiques qui s’ajoutent au suivi clinique assuré par les médecins et les membres de la famille.</p> <p>Différents professionnels de la santé peuvent jouer un rôle dans le cadre du bilan diagnostique, du traitement et de la rééducation. Voici une liste de personnes qui pourraient vous apporter une aide, à vous et à votre famille, dans votre parcours:</p> <ol> <li>Neurologues: médecins qui ont suivi une formation de spécialiste des maladies qui touchent le cerveau, la moelle épinière et les nerfs périphériques. Les neurologues sont souvent les premiers spécialistes consultés quand un enfant présente des symptômes neurologiques anormaux.</li> <li>Rhumatologues: médecins spécialisés en rhumatologie, une sous-spécialité qui s’intéresse entre autres aux maladies inflammatoires. Les rhumatologues traitent des affections comme le lupus, la vascularite et ​l’arthrite. Certains sont spécialisés dans un sous-ensemble particulier d’affections rhumatologiques, par exemple celles qui affectent le cerveau. C’est pourquoi les experts des maladies inflammatoires du cerveau sont souvent des rhumatologues.</li> <li>Psychiatres: médecins qui ont suivi une formation de spécialiste des troubles qui affectent les fonctions intangibles du cerveau, comme la cognition, le comportement et l’émotion. De nombreuses maladies inflammatoires du cerveau s’accompagnent de symptômes comportementaux ou psychiatriques anormaux. Par ailleurs, le processus de rétablissement lui-même peut être difficile pour les patients. C’est pourquoi des psychiatres jouent souvent un rôle dans le cadre du diagnostic initial et pendant la période de rétablissement.</li> <li>Infirmiers autorisés en pratique avancée et infirmiers praticiens (IP): les infirmiers qui ont un champ d’exercice avancé et les IP ont terminé une formation de niveau universitaire dans une spécialité donnée. Les infirmiers autorisés en pratique avancée et les IP spécialisés dans les maladies du cerveau sont souvent les partenaires les plus fiables pendant le processus de rétablissement. Ils ont une vaste expérience pratique et peuvent fournir un soutien considérable aux personnes qui ont des questions concernant les médicaments et le déroulement de la rééducation.</li> <li>Thérapeutes en rééducation: tous les spécialistes en rééducation ci-dessous jouent un rôle fondamental dans le processus de rééducation. La rééducation peut avoir lieu dans un hôpital de soins actifs où l’enfant a été admis initialement pour la prise en charge de la maladie ou dans un hôpital de rééducation où l’enfant aura été transféré après le diagnostic. Certains hôpitaux de rééducation pédiatrique se spécialisent dans la rééducation des enfants qui ont des lésions neurologiques. Pour les enfants, ce sont souvent les meilleurs endroits où recevoir du soutien et des soins spécialisés.</li> <li>Ergothérapeutes : spécialistes formés à l’évaluation et au traitement des difficultés dans les domaines de la motricité fine, du raisonnement et de la déglutition.</li> <li>Physiothérapeutes (kinésithérapeutes): spécialistes formés à l’évaluation et au traitement des changements dans les domaines de la motricité globale, de la mobilité et de la douleur.</li> <li>Orthophonistes : spécialistes formés à l’évaluation et au traitement des changements dans les domaines du langage et de la communication.</li></ul></ol><h2>Soutien et ressources supplémentaires (en anglais)​</h2> <p><a href="http://www.sickkids.ca/Research/Brainworks/Welcome/Welcome.html" target="_blank">BrainWorks</a></p>

 

 

Living with inflammatory brain disease2438.00000000000Living with inflammatory brain diseaseLiving with inflammatory brain diseaseLEnglishImmunologyChild (0-12 years);Teen (13-18 years)BrainImmune systemNon-drug treatmentCaregivers Adult (19+)NA2013-06-11T04:00:00Z​Susanne Benseler, MD;Manisha Sickand, MSc;Marinka Twilt, MD12.000000000000037.00000000000001034.00000000000Health (A-Z) - ProcedureHealth A-Z<p>For your child with inflammatory brain disease learn about the different health-care professionals they will interact with and some of the challenges they will face during their recovery.</p><h2>How will this disease impact my life?</h2> <p>Most families have a lot of questions regarding what their child can and cannot do during recovery and rehabilitation. There are no specific guidelines to follow when it comes to diet, sports or recreational activities since every child is different. However, you know your child best. Once you believe they have recovered enough mobility and understanding, they can return to their normal routine and activities. Nevertheless, these diseases, like other inflammatory brain disorders, do impact a child's life in many ways. For more information, please read the following pages:</p> <ul> <li><a href="/Article?contentid=1173&language=English">CNS Treatment</a></li> <li><a href="/Article?contentid=1127&language=English">CNS vasculitis: Lifestyle changes </a></li> <li><a href="/Article?contentid=1129&language=English">CNS vasculitis: Lifestyle changes for teenagers </a></li> <li><a href="/Article?contentid=1128&language=English">CNS vasculitis: Lifestyle changes for school-aged children </a></li> </ul><h2>Key points</h2> <ul> <li>Your child with inflammatory brain disease will interact with many different health-care professionals during their journey including a neurologist, rheumatologist and rehabilitation therapists.</li> <li>Full clinical recovery can range anywhere from two weeks to 24 months.</li> <li>Children often initially seem well in the first few months after diagnosis but full functional and physical recovery takes longer.</li> </ul><h2>Tips from experienced patients and families</h2> <p>The following are tips from parents and children diagnosed with <a href="/Article?contentid=927&language=English">antibody-mediated inflammatory disease</a>:</p> <ul> <li>Stay positive: It is important for both patients and families to remain positive. A positive attitude helps tremendously when trying to motivate your child. Improvements happen daily, recognizing and encouraging each step along the way is key.</li> <li>Expect setbacks: the recovery process is not a smooth one, one step forward is usually followed by two steps backwards. Expect difficulties and know that full recovery takes a long time.</li> <li>Be attentive, support and advocate for your child.</li> <ul> <li>Remember, if your child is recovering from a coma, they may appear unresponsive, but they are relying on you, as their parent to tend to their needs.</li> <li>Never leave your child alone, always keep your child company. Just your presence makes a big difference.</li> <li>During rehabilitation, be less concerned about actual antibody titres and more attentive to clinical recovery such as level of cognition, sleep patterns, mood and speech improvements.</li> <li>As a parent, you know your child best; doctors and nurses depend on you to ensure the most appropriate care.</li> </ul> <li>Stay informed: Although it can be an overwhelming task, understanding the disease and what is involved is paramount. Ask questions and seek support.</li> <li>Every patient is different: Remember that every patient is different, so even if your child does not appear to recover as quickly as another child, do not assume this is a bad sign.</li> <li>Talk to your child: Children diagnosed with these conditions express a desire to be included in discussions regarding their care. Make an effort to 'keep them in the loop'. They too have questions about the disease, the treatment and the steps involved in recovery.</li> </ul><h2>Recovery and Relapse</h2> <p>The reported time to clinical recovery is variable and can range anywhere from two weeks to 24 months. Intensive rehabilitation is frequently required and many children return back to normal. However, this does not usually occur quickly. While many children appear well in the first several months, parents will notice that full, 100% functional and physical recovery takes much longer. Therefore, patience is a must as the road to recovery can be a long and bumpy one. Frequently reported issues include: </p> <ul> <li>Infections, especially of the gastrointestinal tract and respiratory tract </li> <li>Abnormal movements, muscle spasms and muscle weakness </li> <li>Memory loss, emotional outbursts and temper tantrums </li> <li>Seizures </li> </ul> <p>Understandably, the threat of a relapse for some patients is a real and scary one. Although we are capable of ridding the body of autoantibodies after the initial attack, we do not know whether they ever go away completely. Since we do not fully understand what leads to autoantibody production in the first place, it is difficult to predict with certainty whether the antibodies will ever return. Periodic measurements of the number of antibodies in the CSF are the most sensitive method to measure disease progression. However, repetitive lumbar punctures are hardly practical for an adult, let alone a child. Luckily, clinical presentation or blood titres are excellent proxies for CSF titres. It is for this reason that we suggest periodic blood testing alongside clinical monitoring by physicians and family members be used instead.</p><h2>Your health-care team </h2> <p>Various health-care professionals may be involved during the diagnostic work-up, treatment and rehabilitation periods. The following is a list of possible people that may help you and your family along this journey:</p> <ol> <li>Neurologist: doctors who have specialized training in diseases that affect the brain, spinal cord and peripheral nerves. As a result, neurologists are often the first specialists involved when your child presents with abnormal neurological symptoms.</li> <li>Rheumatologist: doctors who have specialized in rheumatology, a subspecialty that has expertise in inflammatory diseases. Examples of conditions that rheumatologists treat include lupus, vasculitis and arthritis. Some rheumatologists are experts in particular subsets of rheumatological conditions, including those that affect the brain. As a result, many of the experts in inflammatory brain disease are in fact, rheumatologists.</li> <li>Psychiatrist: physicians who have specialized training in conditions that affect the intangible functions of the brain, such as cognition, behavior and emotion. Many inflammatory brain diseases present with abnormal psychiatric or behavioural symptoms. The recovery process itself can also be quite difficult for patients. As a result, psychiatrists are often involved during the initial diagnosis and during the recovery period.</li> <li>Advanced practice registered nurses (APRN) and nurse practitioners (NP): nurses that have an advanced scope of practice and NPs are nurses that have completed graduate level training in particular specialty. APRNs or NPs who have specialized in brain disease are often your most trusted resource during the recovery process. They have a wealth of hands-on experience and can provide a great deal of support regarding questions about medications and what to expect during rehabilitation.</li> <li>Rehabilitation therapists: The following rehabilitations specialists all play integral roles in the rehabilitation process. Rehabilitation can take place in an acute care hospital where the child is initially admitted for disease management or a rehabilitation hospital where your child may be transferred following diagnosis. There are paediatric rehabilitation hospitals that actually specialize in the rehabilitation of children with neurological injuries. <span class="ms-rteThemeForeColor-2-0">These are often the best places for children to receive dedicated care and support:</span></li> <ul> <li>Occupational therapist: specialists who are trained to assess and treat difficulties in fine motor, thinking and swallowing skills. </li> <li>Physiotherapist: specialists who are trained to assess and treat changes in gross motor skills, mobility and pain. </li> <li>Speech language therapist: specialists who are trained to assess and treat changes in speech and communication. </li> </ul></ol><h2>Additional resources and support</h2> <p><a href="http://www.sickkids.ca/Research/Brainworks/Welcome/Welcome.html" target="_blank">BrainWorks</a></p>https://assets.aboutkidshealth.ca/AKHAssets/living_with_inflamatory_brain_disease.jpgLiving with inflammatory brain disease

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