Finding a specialist doctor to help in the care of your child is a great way of making sure you have all the information, advice and care, you and your child need.
There are a number of things to consider when it comes to choosing a specialist doctor:
Your child’s regular doctor, pediatrician or primary care physician will always play an important role in their care but it’s important to remember that they cannot be an expert in every single disease, so they may not have a deep understanding of your child’s specific rare autoinflammatory disease. A specialist on the other hand will have expert knowledge on your child’s condition and will be able to offer individual, tailored advice.
There are a number of different specialists that may be able to help depending on your child’s condition. For a child with systemic juvenile idiopathic arthritis (SJIA) for example, a rheumatologist, who specialises in joints and arthritis, may be recommended. If your child starts to experience symptoms of amyloidosis (which you can find here), where an abnormal protein called amyloid builds up in organs and tissues, you may want to take them to a nephrologist (a kidney specialist). Genetic specialists or counsellors could also be important to consider as they can provide information on the cause of the disease and can help in understanding how other family members may be affected.
The best place to start is to ask your child’s primary care physician, as they should have an idea of the kind of specialist care that would be beneficial for your child. Remember that you don’t need to just pick one specialist either. If your child has multiple health needs they may need multiple specialists.
If they do require multiple specialists it will be important to put each specialist in touch with the other members of your child’s specialist team, so that they can make sure all suggested treatments are complimentary and ensure your child is receiving safe, effective care.
Location can be important to consider when choosing a specialist. Travel with an unwell child can be difficult so it’s important to find a specialist not too far away. Some specialist centres provide transport and some insurance policies may cover cost of travel too, so be sure to check before making your decision.
If you live in a country that requires health insurance, it’s important to create an open line of communication between you and your provider, as much as possible. Before you book an appointment with a specialist, check your policy will cover it and what information your provider requires. Talk to your provider if you have any doubts or questions.
So how do you actually find a specialist?
If you want to find a specialist, talk to your primary care physician first as they are likely to know about a number of different experts in the area and can use their connections to find out more.
Resources such as Orphanet can also help. Orphanet provides access to a directory of expert services and centres for rare diseases or groups of diseases. We would always recommend checking with your doctor once you’ve found a specialist through Orphanet to make sure they agree with the choice.
Your child is special and finding them a specialist doctor can help ensure they are receiving all the care they need.
230 pages of patient stories and first hand experiences
Get advice to help you, if you know someone with a recurrent fever syndrome.
Read about the multifaceted burdens of rare autoinflammatory diseases.
Navigating rare autoinflammatory diseases: our commitment to you
Uncover the complexities of autoinflammatory diseases and learn how we are focused on helping individual through awareness, connection, community, progress and change.