Sickle cell disease: A practical guide for parentsSSickle cell disease: A practical guide for parentsSickle cell disease: A practical guide for parentsEnglishHaematologyChild (0-12 years);Teen (13-18 years)BodyCardiovascular systemConditions and diseasesCaregivers Adult (19+)NA2011-03-18T04:00:00ZMelanie Kirby-Allen, MD, FRCPC8.0000000000000060.00000000000001906.00000000000Health (A-Z) - ConditionsHealth A-Z<p>An easy-to-understand overview of sickle cell disease for parents.</p><h2>What is sickle cell disease (SCD)?</h2><p>Sickle cell disease (SCD) is an inherited blood disorder. It is not contagious. Most children with SCD are of African ancestry, but children of Middle Eastern, Mediterranean and South Asian ancestry are also affected.</p> <figure class="asset-c-80"> <span class="asset-image-title">Sickle cell shape</span> <img src="https://assets.aboutkidshealth.ca/akhassets/Sickle_cell_comparison_MED_ILL_EN.png" alt="" /> <figcaption class="asset-image-caption">Red blood cells carry a protein called hemoglobin, which brings oxygen to all the parts of the body. People with sickle cell disease carry sickle-shaped hemoglobin cells that tend to get stuck in the smaller blood vessels.</figcaption> </figure><h2>Key points</h2> <ul> <li>Sickle cell disease (SCD) is an inherited blood disorder.</li> <li>The two main characteristics of SCD are a long-standing anemia and recurrent episodes of vaso-occlusion.</li> <li>Anemia is a result of increased breakdown of red blood cells. Children may appear pale and have yellow eyes from time to time.</li> <li>Vaso-occlusive episodes are blockages of the blood vessels by deformed red blood cells.</li> <li>Infection, fatigue and dehydration are possible triggers for a pain crisis.</li> <li>Do not use ice packs to treat pain.</li> </ul><h2>Signs and symptoms of sickle cell disease</h2><p>The two main characteristics of SCD are a long-standing <a href="/Article?contentid=841&language=English">anemia</a> and recurrent episodes of vaso-occlusion:</p><ul><li> <strong>Anemia</strong> is a result of increased breakdown of red blood cells. Your child may appear pale and have yellow eyes from time to time. He/she may become tired sooner than his peers when doing an activity.</li><li> <strong>Vaso-occlusive episodes </strong>are blockages of the blood vessels anywhere in the body by deformed red blood cells. This causes a lack of oxygen in the affected area of the body. Symptoms depend on where the blood vessels are blocked. Most commonly he may experience bone pain.</li></ul> <figure class="asset-c-80"> <span class="asset-image-title">Vaso-occlusion in sickle cell disease</span> <img src="https://assets.aboutkidshealth.ca/akhassets/Sickle_cell_vaso_occlusion_MED_ILL_EN.png" alt="" /> <figcaption class="asset-image-caption">Healthy red blood cells are soft, round and flexible. Sickled red blood cells are sticky and hard and can block blood flow.</figcaption> </figure> <p>The most common symptom of a vaso-occlusive episode is bone pain. Any bone can be affected, including the arms, legs, back, and skull. These episodes, commonly called pain crises, are unpredictable. Some children do not feel well prior to the actual onset of pain and can let an adult know.</p><p>Possible triggers for a pain crisis include:</p><ul><li>infection</li><li>stress/fatigue</li><li>dehydration</li><li>exposure to cold and very hot temperatures</li></ul><p>Some pain crises happen without a known reason.</p><h3>Preventing pain crises</h3><p>You can help prevent a pain episode by:</p><ul><li>Giving your child lots of fluids to drink so they are not thirsty.</li><li>Dressing them in a few layers of warm clothing in the winter when they are leaving home.</li><li>Sending an extra sweatshirt and socks to school in case your child becomes wet during recess or at any time.</li><li>Recognizing fever as a sign of infection and having your child'seen immediately by a doctor.</li><li>Avoiding vigorous exercise without the ability to take breaks and drink fluids, especially during hot days.</li></ul><p>Even with these measures, though, children may still have a pain crisis.</p><h2>What to do if your child with sickle cell disease is unwell</h2><h3>Temperature</h3><ol><li>First, have your child sit or lie down in a quiet place.</li><li>Take their temperature right away.</li><li>If their temperature is higher than 37.5°C under the armpit, or 38°C in the mouth, take them to the closest Emergency Department.</li><li>If their temperature is less than 37.5°C, do a pain assessment.</li><li>Is there any sign of breathing problems? If yes, take them to the emergency department. If no, do a pain assessment.</li><li>For younger children examine your child's abdomen. If the spleen is felt to be enlarged take your child to the Emergency Department.</li></ol><h3>Doing a pain assessment</h3><ol><li>Ask your child what level their pain is on a scale of 0 to 10, with 0 being no pain and 10 being "the worst pain ever." Ask where the pain is located.</li><li>If the pain is less than 7/10, give them pain medication as prescribed by their doctor.</li><li>If the pain is localized to one or two areas, a warm pack can be applied to the site of pain. ICE PACKS SHOULD BE AVOIDED.</li></ol><h4>Children (five to eight years of age)</h4><p>Ask your child: "If 0 is no pain and 10 is the worst pain you can imagine, what are you feeling now?"</p><h4>Older children (eight years of age and older)</h4><p>Ask your child: "If 0 is no pain and 10 is the worst pain you can imagine, what are you feeling right now?"</p> <figure> <span class="asset-image-title">Pain assessment numerical/visual analogue scale</span> <img src="https://assets.aboutkidshealth.ca/akhassets/PN_painscale_thermom_CHART_IMG_EN.jpg" alt="" /> <figcaption class="asset-image-caption">Children are asked to indicate their pain intensity by putting a mark on the scale.</figcaption> </figure> <h2>Pain management</h2><h3>Medications</h3><ol><li> <a href="/Article?contentid=194&language=English">Morphine</a> _____ mg. Repeat dose every four hours.</li><li>Before each dose, take your child's temperature. If their temperature is higher than 37.5°C under the armpit, go to the nearest Emergency Department right away.</li><li> <a href="/Article?contentid=62&language=English">Acetaminophen</a> _____ mg. Repeat dose every four hours.</li><li> <a href="/Article?contentid=153&language=English">Ibuprofen</a> _____ mg. Repeat dose every six hours.</li><li>Lactulose _____ mL x one dose.</li></ol><h3>Physical</h3><ol><li>Give your child plenty of fluids. Not cold.</li><li>Gently massage the area.</li><li>Apply heat to the area.</li></ol><h3>Tips for using heat</h3><ul><li>Use disposable, instant hot packs. Be sure to follow the instructions on the package.</li><li>Warm blankets from the dryer</li><li>Warm baths</li><li>Apply heat in 20 minute intervals</li><li>Babies and young children should not be left unattended with heat. Use heat with children three years of age and older.</li><li>If the area becomes painful, uncomfortable, or a local skin reaction develops, remove heat immediately</li></ul><h3>Psychological/Behavioural</h3><ul><li>deep breathing</li><li>relaxation exercises</li><li>distractions (movies or music)</li><li>imagery</li></ul><p>With SCD, the spleen function is not as good at destroying the cell coating of some bacteria. If your child is under the age of five, they should be on preventative antibiotics. Also, they should be receiving additional vaccinations to prevent infections caused by the pneumococcal and meningococcal bacteria.</p><p> <strong> <em>Fever in a child with SCD is considered an emergency and requires prompt treatment with antibiotics.</em></strong> <strong> <em>Fever is a sign of infection.</em></strong></p><p>A thermometer must be available at home for assessing the temperature of your child if they are feeling unwell. A temperature higher than 37.5°C under the arm and higher than 38°C by mouth requires that they be seen promptly at an Emergency Department. </p><p>Medicines such as <a href="/Article?contentid=62&language=English">acetaminophen</a> and <a href="/Article?contentid=153&language=English">ibuprofen</a> will reduce fever, but will not affect the infection that is causing the fever. Using them can lead to a false sense of security or to the fever not being taken seriously. Do not give your child these medicines to treat a fever.</p><h2>Fluid requirements for children with sickle cell disease</h2><p>Children with SCD excrete higher volumes of urine compared with their peers because their kidneys cannot concentrate urine. </p><p>Correspondingly, when a child produces more urine than usual, they must also increase their fluid intake. This is particularly important in SCD, as dehydration can trigger pain crises. When a child with SCD is dehydrated, blood cells also become dehydrated and change shape, causing blood vessel blockage and acute pain. Make sure your child has easy access to water at all times.</p><h2>Special situations where parents should call 9-1-1</h2> <p>If any of the following occurs, call 9-1-1 right away:</p> <ul> <li>difficulty breathing</li> <li>loss of consciousness</li> <li>severe headache</li> <li>difficulty speaking or slurring of speech</li> <li>weakness of limbs</li> <li>seizure activity</li> <li>fever greater than 39°C</li> <li>unexplained lethargy/sleepiness</li> <li>persistent vomiting</li> <li>recognition of an enlarged spleen</li> </ul>
داء الكريّات المنجلية: دليل عملي للآباءدداء الكريّات المنجلية: دليل عملي للآباءSickle cell disease: A practical guide for parentsArabicHaematologyChild (0-12 years);Teen (13-18 years)BodyCardiovascular systemConditions and diseasesCaregivers Adult (19+)NA2011-03-18T04:00:00ZNA9.0000000000000053.00000000000002071.00000000000Flat ContentHealth A-Z<p>نظرة عامة سهلة الفهم لمرض داء الكريّات المنجلية من اجل الوالدين.</p>
Anémie falciforme (drépanocytose) : un guide pratique pour les parentsAAnémie falciforme (drépanocytose) : un guide pratique pour les parentsSickle cell disease: A practical guide for parentsFrenchHaematologyChild (0-12 years);Teen (13-18 years)BodyCardiovascular systemConditions and diseasesCaregivers Adult (19+)NA2011-03-18T04:00:00ZMelanie Kirby-Allen, MD, FRCPC8.0000000000000060.00000000000001906.00000000000Health (A-Z) - ConditionsHealth A-Z<p>Un aperçu facile à comprendre sur l’anémie falciforme pour les parents.</p><h2>Qu'est-ce que l'anémie falciforme?</h2> <p>L'anémie falciforme (ou drépanocytose) est une maladie du sang héréditaire (hémopathie). Ce n'est pas contagieux. La plupart des enfants atteints de ce type d'anémie sont d'ascendance africaine; en outre, les enfants d'ascendance du Moyen-Orient, de la Méditerranée et de l'Asie du sud sont aussi touchés. </p> <figure> <span class="asset-image-title">Forme des drépanocytes</span> <img src="https://assets.aboutkidshealth.ca/akhassets/Sickle_cell_comparison_MED_ILL_FR.png" alt="" /> <figcaption class="asset-image-caption">Les globules rouges transportent une protéine appelée hémoglobine, qui apporte l'oxygène vers toutes les parties du corps. Les personnes atteintes de drépanocytose sont porteuses de cellules d'hémoglobine en forme de drépanocytes qui ont tendance à rester bloquées dans les petits vaisseaux sanguins.</figcaption> </figure> <h2>À retenir</h2> <ul> <li>L'anémie falciforme est une maladie du sang (hémopathie) héréditaire.</li> <li>Les deux principales caractéristiques de l'anémie falciforme sont une anémie de longue date et des épisodes récurrentes d'occlusion vasculaire.</li> <li>L'anémie découle de la dégradation croissante des globules rouges. Il se peut que votre enfant semble pâle et ait les yeux jaunes de temps en temps. Les épisodes d'occlusion vasculaire sont des blocages des vaisseaux sanguins par des globules rouges déformés.</li> <li>infection, la fatigue et la déshydratation sont des déclencheurs possibles de crise de douleur.</li> <li>N'utilisez pas de bloc réfrigérant pour traiter la douleur.</li> </ul><h2>Signes et symptômes de l'anémie falciforme</h2><p>Les deux principales caractéristiques de l'anémie falciforme sont une <a href="/Article?contentid=841&language=french">anémie</a> de longue date et des épisodes récurrentes d'occlusion vasculaire : </p><ul><li>L'<strong>anémie</strong> découle de la dégradation croissante des globules rouges. Il se peut que l'enfant ait l'air pâle et les yeux jaunes de temps en temps. Il peut se sentir fatigué plus tôt que ses pairs lors d'une activité.</li><li>Les <strong>épisodes d'occlusion vasculaire </strong>sont des blocages des vaisseaux sanguins un peu partout dans le corps par les globules rouges déformés (drépanocytes). Ces blocages causent un manque d'oxygène dans les zones corporelles touchées. Les symptômes dépendent de l'endroit où se trouvent les vaisseaux sanguins bouchés. Si un vaisseau sanguin allant au cerveau est bouché, par exemple, l'enfant aura les symptômes d'un AVC, telle une faiblesse d'un côté du corps. Si c'est un vaisseau sanguin allant à l'os d'une jambe qui est bouché, l'enfant ressentira une douleur dans la jambe. </li></ul> <figure> <span class="asset-image-title">Occlusion vasculaire dans la drépanocytose</span> <img src="https://assets.aboutkidshealth.ca/akhassets/Sickle_cell_vaso_occlusion_MED_ILL_FR.png" alt="" /> <figcaption class="asset-image-caption">Les globules rouges sains sont mous, arrondis et souples. Les globules rouges en forme de drépanocytes sont collants et durs, et ils peuvent bloquer la circulation sanguine.</figcaption> </figure> <p>Le symptôme le plus courant d'un épisode d'occlusion vasculaire est la douleur ressentie dans les os. N'importe quel os peut être touché, qu'il s'agisse des bras, des jambes, du dos ou du crâne. Ces épisodes, communément appelées crises de douleur, sont imprévisibles. Certains enfants ne se sentent pas bien avant le début réel de la douleur et un adulte peut par conséquent en être alerté.</p><p>Les déclencheurs possibles d'une crise de douleur comprennent : </p><ul><li>infection</li><li>stress/fatigue</li><li>déshydratation</li><li>exposition aux températures très froides et très chaudes</li></ul><p>Certaines crises de douleur surviennent sans raison apparente.</p><h3>Prévenir les crises de douleur</h3><p>Vous pouvez aider à prévenir un épisode de douleur en : </p><ul><li>Donnant à l'enfant beaucoup de liquide à boire afin qu'il n'ait pas soif.</li><li>l'habillant de plusieurs couches de vêtements chauds l'hiver lorsqu'il quitte la maison.</li><li>Envoyant un sweatshirt et des chaussettes supplémentaires à l'école au cas où l'élève suerait beaucoup.</li><li>Identifiant la fièvre comme un signe d'infection et en consultant un médecin immédiatement.</li><li>Évitant de faire de l'exercice énergique sans pause et sans pouvoir boire, en particulier pendant les chaudes journées. </li></ul><p>Même avec ces mesures, il se peut que votre enfant fasse une crise de douleur.</p><h2>Que faire si votre enfant atteint d'anémie falciforme ne se sent pas bien</h2><h3>Température</h3><ol><li>D'abord, asseyez-le ou allongez-le dans un endroit tranquille.</li><li>Vérifiez tout de suite s'il a de la fièvre.</li><li>Si sa température est supérieure à 38 °C sous les aisselles ou à 38,5 °C dans la bouche, amenez-le au service d'urgence le plus près.</li><li>Si sa température est inférieure à 38 °C, évaluez la douleur.</li><li>Présente-t-il des signes de problèmes respiratoires? Si c'est le cas, amenez-le au service d'urgence. Dans le cas contraire, évaluez sa douleur.</li><li>Pour les plus jeunes enfants, examinez l'abdomen de votre enfant. Si la rate semble avoir grossi, amenez votre enfant au service d'urgence.</li></ol><h3>Évaluation de la douleur</h3><ol><li>Demandez à votre enfant, sur une échelle de 0 à 10, 0 égalant « aucune douleur » et 10 étant le point où « la douleur est la pire », où se situe sa douleur.</li><li>Si elle se situe à moins de 7/10, donnez-lui un médicament contre la douleur tel que prescrit par le médecin.</li><li>Si la douleur est localisée à un ou deux endroits, vous pouvez appliquer un sac chaud sur la douleur. ÉVITEZ LES BLOCS RÉFRIGÉRANTS.</li></ol><h4>Enfants (de 5 à 8 ans)</h4><p>Demandez à votre enfant (si 0 = aucune douleur et 10 = la pire douleur) où se situe sa douleur.</p><h4>Enfants plus âgés (à partir de 8 ans)</h4><p>Demandez à votre enfant (si 0 = aucune douleur et 10 = la pire douleur) où se situe sa douleur.</p> <figure> <span class="asset-image-title">Échelle analogique visuelle ou numérique pour évaluer la douleur</span><img src="https://assets.aboutkidshealth.ca/akhassets/PN_painscale_thermom_CHART_IMG_FR.jpg" alt="" /><figcaption class="asset-image-caption">On demande aux enfants d'indiquer l'intensité de la douleur ressentie en plaçant une marque sur l'échelle.</figcaption> </figure> <h2>Gestion de la douleur</h2><h3>Médicaments</h3><ol><li> <a href="/Article?contentid=194&language=French">Morphine</a> _____ mg. Répéter la dose toutes les quatre heures.</li><li>Avant chaque dose, prenez la température de votre enfant. Si elle est supérieure à 37,5 °C sous les aisselles, amenez-le au service d'urgence le plus proche immédiatement.</li><li><a href="/Article?contentid=62&language=English">Acétaminophène</a> _____ mg. Répéter la dose toutes les quatre heures.</li><li> <a href="/Article?contentid=153&language=French">Ibuprofène</a> _____ mg. Répéter la dose toutes les six heures.</li><li>Lactulose _____ mL x une dose.</li></ol><h3>Traitement corporel</h3><ol><li>Donnez beaucoup de liquide à votre enfant. Pas de liquide froid.</li><li>Massez doucement la partie touchée.</li><li>Y appliquez de la chaleur.</li></ol><h3>Trucs pour utiliser la chaleur</h3><ul><li>Utilisez des enveloppements chauds instantanés et jetables. Assurez-vous de suivre les instructions indiquées sur l'emballage</li><li>Des couvertures réchauffées dans le sèche-linge</li><li>Des bains chauds</li><li>Appliquez la chaleur à 20 minutes d'intervalle</li><li>Ne laissez pas les bébés et les jeunes enfants sans surveillance avec la source de chaleur. N'utilisez la chaleur que sur les enfants âgés de trois ans ou plus</li><li>Si la zone devient douloureuse, inconfortable ou qu'une réaction cutanée locale se développe, retirez immédiatement la source de chaleur</li></ul><h3>Psychologie et comportements</h3><ul><li>respiration profonde</li><li>exercices de relaxation</li><li>distractions (films ou musique)</li><li>imagerie </li></ul><p>L'anémie falciforme perturbe la rate dans la destruction du revêtement cellulaire de certaines bactéries. Si votre enfant a moins de cinq ans, on doit lui prescrire des antibiotiques de prévention. Il doit aussi recevoir des vaccins supplémentaires afin de prévenir les infections causées par les bactéries pneumocoque et méningocoque.</p><p> <strong> <em>De la fièvre chez un enfant atteint d'anémie falciforme est considéré comme une urgence qui nécessite un traitement rapide aux antibiotiques. La fièvre est un signe d'infection.</em></strong></p><p>Vous devez vous procurer un thermomètre à la maison pour évaluer la température de votre enfant s'il ne se sent pas bien. Une température supérieure à 38°C sous les aisselles et à 38,5 °C dans la bouche nécessite des soins au service d'urgence le plus proche immédiatement. </p><p>Les médicaments comme l'acétaminophène et l'ibuprofène réduiront la fièvre mais n'influenceront pas l'infection qui la cause. S'en servir procurera un faux sentiment de sécurité ou vous empêchera de prendre la fièvre au sérieux. Ne donnez pas ces médicaments à votre enfant pour traiter la fièvre.</p><h2>Besoin en liquide chez les enfants atteints d'anémie falciforme</h2><p>Les enfants atteints de ce type d'anémie excrètent des quantités importantes d'urine comparativement à leurs pairs, parce que leurs reins ne peuvent concentrer l'urine. </p><p>Par conséquent, lorsqu'un enfant produit plus d'urine que la normale, il doit aussi augmenter sa consommation de liquide. C'est particulièrement important pour les personnes souffrant d'anémie falciforme car la déshydratation peut déclencher des crises de douleur. Lorsqu'un enfant atteint de cette maladie est déshydraté, les globules rouges se déshydratent et changent de forme, ce qui cause un blocage des vaisseaux sanguins et une douleur aiguë. Assurez-vous que votre enfant ait accès facilement à de l'eau en tout temps.</p><h2>Situations spéciales où les parents doivent signaler le 9-1-1</h2> <p>Téléphonez au service d'urgence (9-1-1) immédiatement si l'un ou l'autre des éléments suivants se présente : </p> <ul> <li>difficulté à respirer</li> <li>perte de conscience</li> <li>importants maux de tête</li> <li>difficulté à parler ou trouble de l'élocution</li> <li>faiblesse des membres</li> <li>crise épileptique</li> <li>fièvre supérieure à 39 °C</li> <li>léthargie ou somnolence inexpliquée</li> <li>vomissements persistants</li> <li>élargissement de la rate.</li></ul>
A anemia falciforme: Guia prático dos paisAA anemia falciforme: Guia prático dos paisSickle Cell Disease: A Practical Guide for ParentsPortugueseNAChild (0-12 years);Teen (13-18 years)NANANAAdult (19+)NA2011-03-18T04:00:00Z53.00000000000009.000000000000002071.00000000000Flat ContentHealth A-Z<p>Uma visão global fácil de entender sobre a anemia falciforme destinada aos pais.</p>
Anemia falciforme: Guía práctica para los padresAAnemia falciforme: Guía práctica para los padresSickle Cell Disease: A Practical Guide for ParentsSpanishNAChild (0-12 years);Teen (13-18 years)NANANAAdult (19+)NA2011-03-18T04:00:00ZMelanie Kirby-Allen, MD, FRCPC000Flat ContentHealth A-Z<p>Una descripción sencilla de la anemia falciforme para padres.</p>

 

 

Sickle cell disease: A practical guide for parents745.000000000000Sickle cell disease: A practical guide for parentsSickle cell disease: A practical guide for parentsSEnglishHaematologyChild (0-12 years);Teen (13-18 years)BodyCardiovascular systemConditions and diseasesCaregivers Adult (19+)NA2011-03-18T04:00:00ZMelanie Kirby-Allen, MD, FRCPC8.0000000000000060.00000000000001906.00000000000Health (A-Z) - ConditionsHealth A-Z<p>An easy-to-understand overview of sickle cell disease for parents.</p><h2>What is sickle cell disease (SCD)?</h2><p>Sickle cell disease (SCD) is an inherited blood disorder. It is not contagious. Most children with SCD are of African ancestry, but children of Middle Eastern, Mediterranean and South Asian ancestry are also affected.</p> <figure class="asset-c-80"> <span class="asset-image-title">Sickle cell shape</span> <img src="https://assets.aboutkidshealth.ca/akhassets/Sickle_cell_comparison_MED_ILL_EN.png" alt="" /> <figcaption class="asset-image-caption">Red blood cells carry a protein called hemoglobin, which brings oxygen to all the parts of the body. People with sickle cell disease carry sickle-shaped hemoglobin cells that tend to get stuck in the smaller blood vessels.</figcaption> </figure><h2>Key points</h2> <ul> <li>Sickle cell disease (SCD) is an inherited blood disorder.</li> <li>The two main characteristics of SCD are a long-standing anemia and recurrent episodes of vaso-occlusion.</li> <li>Anemia is a result of increased breakdown of red blood cells. Children may appear pale and have yellow eyes from time to time.</li> <li>Vaso-occlusive episodes are blockages of the blood vessels by deformed red blood cells.</li> <li>Infection, fatigue and dehydration are possible triggers for a pain crisis.</li> <li>Do not use ice packs to treat pain.</li> </ul><h2>Signs and symptoms of sickle cell disease</h2><p>The two main characteristics of SCD are a long-standing <a href="/Article?contentid=841&language=English">anemia</a> and recurrent episodes of vaso-occlusion:</p><ul><li> <strong>Anemia</strong> is a result of increased breakdown of red blood cells. Your child may appear pale and have yellow eyes from time to time. He/she may become tired sooner than his peers when doing an activity.</li><li> <strong>Vaso-occlusive episodes </strong>are blockages of the blood vessels anywhere in the body by deformed red blood cells. This causes a lack of oxygen in the affected area of the body. Symptoms depend on where the blood vessels are blocked. Most commonly he may experience bone pain.</li></ul> <figure class="asset-c-80"> <span class="asset-image-title">Vaso-occlusion in sickle cell disease</span> <img src="https://assets.aboutkidshealth.ca/akhassets/Sickle_cell_vaso_occlusion_MED_ILL_EN.png" alt="" /> <figcaption class="asset-image-caption">Healthy red blood cells are soft, round and flexible. Sickled red blood cells are sticky and hard and can block blood flow.</figcaption> </figure> <p>The most common symptom of a vaso-occlusive episode is bone pain. Any bone can be affected, including the arms, legs, back, and skull. These episodes, commonly called pain crises, are unpredictable. Some children do not feel well prior to the actual onset of pain and can let an adult know.</p><p>Possible triggers for a pain crisis include:</p><ul><li>infection</li><li>stress/fatigue</li><li>dehydration</li><li>exposure to cold and very hot temperatures</li></ul><p>Some pain crises happen without a known reason.</p><h3>Preventing pain crises</h3><p>You can help prevent a pain episode by:</p><ul><li>Giving your child lots of fluids to drink so they are not thirsty.</li><li>Dressing them in a few layers of warm clothing in the winter when they are leaving home.</li><li>Sending an extra sweatshirt and socks to school in case your child becomes wet during recess or at any time.</li><li>Recognizing fever as a sign of infection and having your child'seen immediately by a doctor.</li><li>Avoiding vigorous exercise without the ability to take breaks and drink fluids, especially during hot days.</li></ul><p>Even with these measures, though, children may still have a pain crisis.</p><h2>What to do if your child with sickle cell disease is unwell</h2><h3>Temperature</h3><ol><li>First, have your child sit or lie down in a quiet place.</li><li>Take their temperature right away.</li><li>If their temperature is higher than 37.5°C under the armpit, or 38°C in the mouth, take them to the closest Emergency Department.</li><li>If their temperature is less than 37.5°C, do a pain assessment.</li><li>Is there any sign of breathing problems? If yes, take them to the emergency department. If no, do a pain assessment.</li><li>For younger children examine your child's abdomen. If the spleen is felt to be enlarged take your child to the Emergency Department.</li></ol><h3>Doing a pain assessment</h3><ol><li>Ask your child what level their pain is on a scale of 0 to 10, with 0 being no pain and 10 being "the worst pain ever." Ask where the pain is located.</li><li>If the pain is less than 7/10, give them pain medication as prescribed by their doctor.</li><li>If the pain is localized to one or two areas, a warm pack can be applied to the site of pain. ICE PACKS SHOULD BE AVOIDED.</li></ol><h4>Children (five to eight years of age)</h4><p>Ask your child: "If 0 is no pain and 10 is the worst pain you can imagine, what are you feeling now?"</p><h4>Older children (eight years of age and older)</h4><p>Ask your child: "If 0 is no pain and 10 is the worst pain you can imagine, what are you feeling right now?"</p> <figure> <span class="asset-image-title">Pain assessment numerical/visual analogue scale</span> <img src="https://assets.aboutkidshealth.ca/akhassets/PN_painscale_thermom_CHART_IMG_EN.jpg" alt="" /> <figcaption class="asset-image-caption">Children are asked to indicate their pain intensity by putting a mark on the scale.</figcaption> </figure> <h2>Pain management</h2><h3>Medications</h3><ol><li> <a href="/Article?contentid=194&language=English">Morphine</a> _____ mg. Repeat dose every four hours.</li><li>Before each dose, take your child's temperature. If their temperature is higher than 37.5°C under the armpit, go to the nearest Emergency Department right away.</li><li> <a href="/Article?contentid=62&language=English">Acetaminophen</a> _____ mg. Repeat dose every four hours.</li><li> <a href="/Article?contentid=153&language=English">Ibuprofen</a> _____ mg. Repeat dose every six hours.</li><li>Lactulose _____ mL x one dose.</li></ol><h3>Physical</h3><ol><li>Give your child plenty of fluids. Not cold.</li><li>Gently massage the area.</li><li>Apply heat to the area.</li></ol><h3>Tips for using heat</h3><ul><li>Use disposable, instant hot packs. Be sure to follow the instructions on the package.</li><li>Warm blankets from the dryer</li><li>Warm baths</li><li>Apply heat in 20 minute intervals</li><li>Babies and young children should not be left unattended with heat. Use heat with children three years of age and older.</li><li>If the area becomes painful, uncomfortable, or a local skin reaction develops, remove heat immediately</li></ul><h3>Psychological/Behavioural</h3><ul><li>deep breathing</li><li>relaxation exercises</li><li>distractions (movies or music)</li><li>imagery</li></ul><p>With SCD, the spleen function is not as good at destroying the cell coating of some bacteria. If your child is under the age of five, they should be on preventative antibiotics. Also, they should be receiving additional vaccinations to prevent infections caused by the pneumococcal and meningococcal bacteria.</p><p> <strong> <em>Fever in a child with SCD is considered an emergency and requires prompt treatment with antibiotics.</em></strong> <strong> <em>Fever is a sign of infection.</em></strong></p><p>A thermometer must be available at home for assessing the temperature of your child if they are feeling unwell. A temperature higher than 37.5°C under the arm and higher than 38°C by mouth requires that they be seen promptly at an Emergency Department. </p><p>Medicines such as <a href="/Article?contentid=62&language=English">acetaminophen</a> and <a href="/Article?contentid=153&language=English">ibuprofen</a> will reduce fever, but will not affect the infection that is causing the fever. Using them can lead to a false sense of security or to the fever not being taken seriously. Do not give your child these medicines to treat a fever.</p><h2>Fluid requirements for children with sickle cell disease</h2><p>Children with SCD excrete higher volumes of urine compared with their peers because their kidneys cannot concentrate urine. </p><p>Correspondingly, when a child produces more urine than usual, they must also increase their fluid intake. This is particularly important in SCD, as dehydration can trigger pain crises. When a child with SCD is dehydrated, blood cells also become dehydrated and change shape, causing blood vessel blockage and acute pain. Make sure your child has easy access to water at all times.</p><h2>Sports and extra-curricular activities for children with sickle cell disease</h2> <p>Children with SCD should be encouraged to participate fully to the best of their ability and according to their tolerance level. As a result of low hemoglobin level (<a href="/Article?contentid=841&language=English">anemia</a>), your child will tire faster than their peers with physical activity. Encourage your child to try out for school teams and participate in gym, but with more frequent rest periods and increased hydration. </p> <p>It is a good idea for you to talk to your child's physical education teacher about the physical discomforts associated with SCD and any symptoms they have had in the past with physical activity. Try to reach an understanding with the physical education teacher regarding expectations for your child. Children with SCD require exercise like all children and should be encouraged to participate to their tolerance level. Do not restrict your child from all physical activity.</p> <h3>Special precautions for swimming</h3> <p>Your child can participate in swimming classes. However, they should limit the time in the pool to 30 minutes. After getting out of the water, they must dry off and change into dry clothing right away. They should not run around in cold, wet swimsuits as their body temperature will fall, potentially resulting in bone pain.</p> <h3>Special precautions for hot weather</h3> <p>When exposed to very hot temperatures, such as during a sporting event in the summer, your child can participate but with frequent rest breaks and increased hydration.</p> <h3>Special precautions for winter activities</h3> <p>Your child should be allowed to participate in winter activities, but they should be dressed well in layers appropriate for the temperature of the day. Areas of increased loss of body heat, such as fingers, toes, head and ears should all be well covered. At temperatures less than minus 5°C, your child should be excused from participating.</p> <h2>Academic performance for children with SCD</h2> <p>Most children with SCD will perform as well as their peers, so expectations for your child should be similar to those of their peers. Having a chronic illness at times results in reduced self-esteem and lack of confidence. Encouraging them is essential. </p> <p>There are several reasons why some children with SCD may have exceptionalities.</p> <h3>Missed school days</h3> <p>Your child may miss school because of:</p> <ul> <li>scheduled clinic visits</li> <li>inpatient hospitalizations to treat the severe bone pain associated with SCD</li> <li>less severe painful bone crises being treated at home</li> </ul> <p>This means your child may have less instructional time. It has been proven that school attendance is directly related to academic performance. As a parent, you could speak with your child's teacher about setting up a homework buddy program for your child. A "buddy" would be assigned to your child to collect handouts and notify them of important future deadlines. Also, many teachers have websites where they post homework assignments and future dates for both parents and students. Ask your child's teacher to provide make up work when your child has missed time at school. Maintain open communication with your child's teachers.</p> <h3>Neurological problems</h3> <p>One in five children with SCD has so-called "silent strokes." These are small strokes in the frontal area of the brain which go undetected unless an MRI is performed. The frontal area of the brain is responsible for executive functioning and this affects your child's ability to focus, organize, plan and memorize. As children move to the higher grades they may experience increasing difficulty. </p> <p>One in 10 children with SCD will have overt strokes. These result in diminished academic performance and various degrees of physical disability. Most overt strokes can be prevented with a chronic transfusion program, and when children with SCD are identified early in life.</p> <h3>If your child is finding school work challenging</h3> <p>If your child is having challenges academically, neuropsychological testing should be undertaken and appropriate IEP intervention done on an individual basis. This would require your written consent. </p> <p>Children with SCD are expected to have a life expectancy well into the sixth and seventh decade, so they should be prepared for the work force in a manner that is suitable for the adult with SCD. As a result of the <a href="/Article?contentid=841&language=English">anemia</a>, most adults will not be able to pursue careers which involve heavy, sustained physical activity. It is therefore essential that they be steered away from such careers and into less physically demanding jobs. This makes achieving a good education even more important.</p><h2>Special situations where parents should call 9-1-1</h2> <p>If any of the following occurs, call 9-1-1 right away:</p> <ul> <li>difficulty breathing</li> <li>loss of consciousness</li> <li>severe headache</li> <li>difficulty speaking or slurring of speech</li> <li>weakness of limbs</li> <li>seizure activity</li> <li>fever greater than 39°C</li> <li>unexplained lethargy/sleepiness</li> <li>persistent vomiting</li> <li>recognition of an enlarged spleen</li> </ul>https://assets.aboutkidshealth.ca/akhassets/Sickle_cell_vaso_occlusion_MED_ILL_EN.pngSickle cell disease: A practical guide for parents

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