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Guide For Parents With Children Suffering From Rheumatological Diseases

Rheumatological diseases are conditions which affect joints, muscles and bones. This article is a guide to parents for managing these diseases. 
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Guide For Parents With Children Suffering From Rheumatological Diseases


Rheumatological diseases in children are a range of conditions affecting their joints, muscles, bones and connective tissues. These diseases can show various signs and symptoms that may differ from the ones seen in adults. It is important to recognise these signs and symptoms for timely diagnosis and effective treatment. 

Parenting a child with a rheumatological disease presents unique challenges that require careful management and support. Rheumatological conditions in children, such as juvenile idiopathic arthritis (JIA), juvenile dermatomyositis, systemic lupus erythematosus (SLE), and others, can impact various aspects of a child's life. To understand how parents can take care of their children with rheumatological diseases, OnlyMyHealth team interacted with Dr Tanushri Mukherjee Consultant, Neonatologist and Paediatrician at Cloudnine Group of Hospitals, Malad, Mumbai. 

Here's a parenting guide specifically tailored to managing rheumatological diseases in children. 

1. Educate Yourself

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Take the time to learn about your child's specific rheumatological condition, including symptoms, treatment options, and potential complications. Stay informed about available resources, support groups, and healthcare providers specialising in paediatric rheumatology.

2. Build a Strong Support Network

Connect with other parents of children with rheumatological diseases for emotional support and practical advice. Involve family members, teachers, and caregivers in understanding and supporting your child's needs.

3. Communicate Openly with Your Child

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Encourage open and honest communication with your child about their condition, treatment plan, and any concerns they may have. Validate their feelings and provide reassurance while addressing any fears or misconceptions.

4. Advocate for Your Child's Needs

Work closely with healthcare professionals to ensure comprehensive care tailored to your child's individual needs. Advocate for appropriate accommodations at school, including modifications for physical activities and educational support.

5. Manage Treatment and Medications

Establish a consistent treatment routine, including medications, physical therapy, and regular follow-up appointments. Monitor and manage potential side effects of medications, and communicate any changes or concerns to your child's healthcare team.

6. Encourage Physical Activity and Mobility

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Collaborate with healthcare providers to develop an exercise plan that promotes joint mobility and muscle strength without exacerbating symptoms. Emphasise the importance of staying active within the limits of your child's condition.

7. Prioritise Emotional Well-being

Address the emotional impact of the disease on your child, including frustration, sadness, or anxiety. Offer emotional support, validate their feelings, and consider counselling or therapy if needed.

8. Promote a Healthy Lifestyle

Encourage a balanced diet rich in nutrients to support overall health and immune function. Ensure adequate rest and sleep to promote recovery and manage fatigue.

9. Foster Independence and Self-Management

Empower your child to take an active role in managing their condition, including self-monitoring and medication adherence as they grow older. Provide opportunities for age-appropriate responsibilities and decision-making.

10. Create a Positive Environment

Foster a supportive and understanding environment at home and school that encourages inclusion and reduces stigma. Celebrate your child's achievements and strengths, focusing on their abilities rather than limitations.

11. Stay Resilient and Flexible

Be prepared for fluctuations in your child's condition and adapt your parenting approach accordingly. Practice resilience and seek support during challenging times to maintain a positive outlook.

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12. Take Care of Yourself

Remember to prioritise your own physical and emotional well-being as a parent/caregiver. Seek respite and support from others to prevent burnout and maintain a healthy balance.

13. Early diagnosis and seek out a comprehensive management plan.

14. The importance of regular Yoga and swimming in kids with rheumatological disease helps a long way.

15.  Have a plan for the management of flare-ups or Sick day plans. Maintaining a diary.

Conclusion

In conclusion, Dr Mukherjee said, “Parenting a child with a rheumatological disease requires patience, empathy, and resilience. By advocating for your child's needs, fostering open communication, and providing unwavering support, you can help them navigate challenges and thrive despite their condition.” Collaborate closely with healthcare professionals to understand how to manage these diseases and take good care of your kids, Dr Mukherjee advised. 

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