CNS vasculitis: Tips from experienced parentsCCNS vasculitis: Tips from experienced parentsCNS vasculitis: Tips from experienced parentsEnglishHaematologyChild (0-12 years);Teen (13-18 years)BrainArteries;Veins;Capillaries;BrainNon-drug treatmentCaregivers Adult (19+)NA2009-11-06T05:00:00ZSusanne Benseler, MD;Holly Convery, RNEC, BScN6.0000000000000071.0000000000000812.000000000000Flat ContentHealth A-Z<p>As a parent of a sick child, there are things you can do to remain involved in your child's care. Read about being an advocate for your child. </p><p>This page contains strategies recommended by parents whose children have had CNS vasculitis. To help yourself and your child get through the illness, you should: </p><ul><li>advocate for your child</li><li>keep track of your child's progress</li><li>help your child deal with symptoms</li><li>ask your child's school for support</li><li>educate your child about her illness</li></ul> <br><h2>Key points</h2> <ul> <li>You are a vital member of your child's health care team. Speak up for your child if you believe there is a problem. </li> <li>Use a method that works for you to keep track of your child's progress, symptoms and any questions you have for the doctor. </li> <li>Your child may be irritable and sensitive to noise, light and touch. You can help them by keeping the lights in their room dim and giving them earplugs.</li> <li>Your child's school can help your child keep in touch with friends, keep up with school work and remember medications when they go back to school. </li> <li>Keep things simple when educating your child about their illness.</li> </ul>
Vasculite du système nerveux central : conseils de parents expériéncésVVasculite du système nerveux central : conseils de parents expériéncésCNS vasculitis: Tips from experienced parentsFrenchHaematologyChild (0-12 years);Teen (13-18 years)BrainArteries;Veins;Capillaries;BrainNon-drug treatmentCaregivers Adult (19+)NA2009-11-06T05:00:00ZSusanne Benseler, MD;Holly Convery, RNEC, BScN6.0000000000000071.0000000000000812.000000000000Flat ContentHealth A-Z<p>En tant que parent d’un enfant malade, il y a des choses que vous pouvez faire pour participer aux soins de votre enfant. </p><p>Cette page présente des stratégies recommandées par les parents d'enfants atteints de vasculite du système nerveux central (SNC). Pour vous aider et aider votre enfant à composer avec la maladie, vous devriez :</p><ul><li>défendre les intérêts de votre enfant,</li><li>suivre les progrès de votre enfant,</li><li>aider votre enfant à composer avec les symptômes qu'il ressent,</li><li>demander à l'école de votre enfant de vous appuyer,</li><li>informer votre enfant au sujet de sa maladie.</li></ul> <br><h2>À retenir</h2> <ul> <li>Vous constituez un membre essentiel de l'équipe soignante de votre enfant. N'hésitez pas à prendre la parole au nom de votre enfant si vous croyez qu'il y a un problème.</li> <li>Utilisez une méthode qui vous convient pour suivre les progrès de votre enfant et ses symptômes, ainsi que pour noter les questions que vous voulez poser au médecin.</li> <li>Votre enfant peut être irritable et sensible au bruit, à la lumière et au toucher. Vous pouvez l'aider en atténuant la lumière dans sa chambre et en lui donnant des bouchons pour les oreilles.</li> <li>L'école de votre enfant peut l'aider à garder le contact avec ses amis, suivre le travail scolaire et ne pas oublier de prendre ses médicaments lorsqu'il retourne à l'école.</li> <li>Utilisez des termes simples lorsque vous voulez informer votre enfant au sujet de sa maladie.</li> </ul>

 

 

CNS vasculitis: Tips from experienced parents1130.00000000000CNS vasculitis: Tips from experienced parentsCNS vasculitis: Tips from experienced parentsCEnglishHaematologyChild (0-12 years);Teen (13-18 years)BrainArteries;Veins;Capillaries;BrainNon-drug treatmentCaregivers Adult (19+)NA2009-11-06T05:00:00ZSusanne Benseler, MD;Holly Convery, RNEC, BScN6.0000000000000071.0000000000000812.000000000000Flat ContentHealth A-Z<p>As a parent of a sick child, there are things you can do to remain involved in your child's care. Read about being an advocate for your child. </p><p>This page contains strategies recommended by parents whose children have had CNS vasculitis. To help yourself and your child get through the illness, you should: </p><ul><li>advocate for your child</li><li>keep track of your child's progress</li><li>help your child deal with symptoms</li><li>ask your child's school for support</li><li>educate your child about her illness</li></ul> <br><h2>Key points</h2> <ul> <li>You are a vital member of your child's health care team. Speak up for your child if you believe there is a problem. </li> <li>Use a method that works for you to keep track of your child's progress, symptoms and any questions you have for the doctor. </li> <li>Your child may be irritable and sensitive to noise, light and touch. You can help them by keeping the lights in their room dim and giving them earplugs.</li> <li>Your child's school can help your child keep in touch with friends, keep up with school work and remember medications when they go back to school. </li> <li>Keep things simple when educating your child about their illness.</li> </ul><h2>Advocate for your child</h2> <p>Be an advocate for your child in all situations involving diagnosis, drug prescription and medicine intake. Educate yourself about your child's symptoms, causes of disease, potential outcomes, medicines and side effects. Speak up for your child's health if you feel the need to. You are a vital member of your child's health care team. Doctors and nurses count on you to share your questions and concerns.</p> <h2>Keep track of your child's progress</h2> <p>Keep a record of your child's medications, symptoms and progress throughout the treatment. This will be helpful for several reasons: </p> <ul> <li>It will help you keep track of the ups and downs of your child's symptoms. </li> <li>It will help you keep track of any questions you may have for the doctor </li> <li>It will also help the doctors to adjust medication dosages and assess how your child is doing. </li> </ul> <p>You should find a way to remember this information that works for you. Here are some tips that other parents have found useful:</p> <ul> <li>Use a large calendar or planner to keep track of your child's upcoming appointments and tests. Use the same calendar to note what happened during these check-ups and tests. This system is a good way to record easily forgettable details that you and your doctor may need in the future. </li> <li>Take notes of the date, length and type of symptoms your child experiences in between regular check-ups and appointments. Symptoms might include headaches, vomiting or stomach pain. This will help the doctor re-adjust medications and dosages. </li> <li>Write down general notes in a journal or notebook, along with any questions or concerns that you may have. This will help you remember what you want to discuss next time you visit your child's doctor. </li> <li>Keep track of improvements that your child makes. This will help you understand how your child's treatment is going. </li> <li>Take photographs of your child. This will also help document what your child has gone through and how they have improved. </li> </ul> <p>You will have a lot of information thrown at you all at once. Keeping track of appointments, symptoms and questions mentally is more difficult than it seems. Use a recording method that works for you to help you remember all of the many details of your child's disease. </p> <h2>Help your child deal with symptoms</h2> <p>Throughout treatment for CNS vasculitis, your child will have different symptoms. In the early stages of treatment, your child may have the following symptoms: </p> <ul> <li>irritability </li> <li>extreme sensitivity to noise, light or touch </li> </ul> <p>To soothe these symptoms, parents have found some of the following strategies helpful:</p> <ul> <li>covering windows with blankets to reduce the light </li> <li>using eye-covers to block out light; you can buy these or make your own eye blankets out of soft fleece </li> <li>earplugs to make loud noises tolerable </li> <li>stress toys to keep fidgety hands busy and your child calm </li> </ul> <h2>Ask your child's school for support</h2> <p>Your child's teacher and school can help in the following ways:</p> <ul> <li>They can have your child's class send letters, cards and emails regularly, to help your child keep in touch with friends.</li> <li>They can send assignments and reading home, to help keep your child on top of their school work. </li> <li>They can help your child keep track of medications when they come back to class.</li> </ul> <h2>Educate your child about their illness</h2> <p>When your child is still sick, they will probably not be able to take in much information about their illness. Keep things simple: focus on how procedures will feel and what the doctor is doing. </p> <p>When your child wants more detail, you could ask your child's clinic nurse for help with explaining medical terms in a way your child can understand. Try to use concrete examples and analogies to help your child understand. For example, "Your immune system acts like an army that helps protect your body. It normally fights things that might be harmful to the body. In CNS vasculitis, the army gets the wrong information and starts to fight the blood vessels in your brain."</p>CNS vasculitis: Tips from experienced parents

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