Parenting or caring for a child or young person with MCAS
As a parent or carer of a child with Mast Cell Activation Syndrome (MCAS), there may be times where you feel lost, especially if this is a new diagnosis.
We know that your child's health and wellbeing are a top priority and Mast Cell Action are here to help you to understand the condition and hopefully help to make your family's journey a little easier.
Learning that your child has or may have a complex medical condition can be scary and we know there is lots to learn and understand about MCAS and about your child's unique symptoms and triggers.
Taking your time by breaking things into manageable pieces can help you to slowly understand more and learn with your child.
Caring for a child with MCAS
Whether your child has just been diagnosed with MCAS, has suspected MCAS, or you have been living with MCAS for a long time, we know how tough it can be to come to terms with the difficulties your child may be facing and the impact these can have on their life – and on yours.
You are not alone, there are many of us who have walked a similar path and understand how difficult it can be. Please do reach out and get support if you are struggling or finding things tough.
There is a community of people who are also navigating a similar path and coming together to share our experiences and the difficulties we face can help to make the load feel a little lighter sometimes. You might find it helpful to join our parent and carer zoom session to connect with families coping with MCAS.
Learning about your child's triggers
Understanding which triggers cause your child’s MCAS to flare up, and especially those that trigger severe symptoms, can help you to plan how to avoid these where possible, which may help to reduce the symptoms your child experiences.
Keeping a diary of potential triggers, symptoms and reactions, can help you to detect your child’s unique triggers. Remember that triggers are unique to each person, but common triggers include foods, strong scents, chemicals in the home, cleaning products and personal care products. Many people with MCAS are also affected by emotions, hormones and stress.
If you suspect that something is a trigger, it may be helpful to remove this or avoid it where possible. If it is safe to do so, you could then undertake a ‘challenge’ to see if this is in fact a trigger. This should be done with the support of your medical professionals.
Avoiding triggers
It can be complicated learning to detect all of our triggers and sometimes even more complicated trying to avoid them.
Avoiding triggers where possible can help to limit the symptoms your child may experience due to having less reactions.
Being organised and prepared can be really helpful when managing day-to-day life with MCAS.
You might find it helpful to connect with other parents and carers in our Facebook support groups to share top tips.
Managing your home environment is a great way to reduce exposure to known triggers. Read more about managing your environment or isolating your triggers.
Staying on top of medications
Your child’s doctor might give you a combination of medicines for your child, like antihistamines or mast cell stabilisers, to ease their symptoms. You can read more about medications typically used to treat MCAS here.
Talking to your child about their new medications and explaining why they need to take them can help them to understand why they are important and feel more comfortable taking them.
Your child might like to help you create a medication timetable so that everyone caring for them knows which medications they need to take at which times – and your child knows too!
"I found a basic smartwatch which could have 25 alarms pre-set so my son could remember when his medications were due. This helped me to feel more comfortable as he gained some independence in his early teenage years!" Parent of child living with MCAS.
Listening to our bodies
Our bodies are experts at telling us what they need – we might recognise that we are tired or hungry. Learning to tune in to what our bodies are telling us is really important when living with chronic illness, sometimes we may not be able to keep up with our friends or do everything we want to do.
It's okay to slow down, it’s ok to say no if you don’t feel well enough to join in or you need to rest.
Rest is super important for helping us to feel better, especially because sleeping is how our bodies recover and regenerate.
It can be tough caring for someone with a chronic illness, so it is important that carers for children with MCAS rest when they can as well! Try explaining the spoon theory to your child to help them choose where they want to ‘spend’ their energy, or discuss the boom and bust theory together.
Plan ahead
With lots of potential triggers in lots of different places, it can be useful to pause and consider which of your child’s triggers you might encounter in the day or weeks ahead.
Pausing to identify which triggers your child may come into contact with and consider ways to avoid these where possible can be a useful tool in helping to keep your child’s symptoms stable.
Sometimes it will be possible to avoid triggers, at other times you may have to decide if it’s worth it. If your child isn’t going to experience life-threatening symptoms, and their health professionals are comfortable with them being exposed to triggers, it may be useful to think about the bucket theory and complete our bucket theory exercise with your child to help you consider how much different activities, foods and other factors will add to your child’s histamine bucket.
Being snack smart
Many people with MCAS have food triggers. Avoiding foods which trigger symptoms can help us to feel better. If certain foods make your child feel unwell, talk to your child about finding alternatives and work with your dietitian or nutritionist to include as many safe foods in your child’s diet as possible.
Sometimes people with MCAS have a very limited diet, some of our community find that presenting the food they can eat in new and unique ways such as in new bowls or unusual dishes can help to keep mealtimes interesting!
Being prepared with safe snacks while you’re out and about and planning for mealtimes that will happen while you’re out, so you aren’t caught unawares can reduce the stress of trying to source safe food at the last minute.
Providing a bag of your child’s safe treats for school or childcare settings can help to avoid disappointment or upset if your child can’t share other children’s birthday treats.
If your child is attending a party where they won’t be able to eat some or all of the food available, talking this through with them beforehand can help them to be prepared and reduce stress and upset during the party. Making sure your child has safe alternatives wherever possible can help too!
Stay cool and calm
Stress can be a trigger for many people living with MCAS. Although stress is often unavoidable, there are ways that it can be reduced or managed.
Encouraging your child to find ways to vent their frustrations and release their stress could be a great way of helping them to manage stressful times.
You could also try the mindfulness and Qigong video’s from our YouTube channel or come along to our mindfulness drop ins, Qigong sessions or our rest and unwind class to get some top tips to share with your child.
Making a plan with your child about how they can manage their own stress could help to give them vital tools to cope with stressful situations as they grow.
Embracing change
Life is full of surprises, and sometimes, we're faced with changes that we didn't expect. If your child has recently been diagnosed with MCAS, this is a big change and it often takes families some time to come to terms with their child’s diagnosis and the impact of this on their lives - but remember that we have an incredible capacity to adapt and thrive, even in the face of challenges and with the right support and knowledge we can be better equipped to handle those tricky MCAS moments.
Remember that MCAS is not your fault. It's a part of your child’s journey, and they are not defined by it. Embrace the truth that you are still the amazing family you've always been, with dreams, passions, and a whole world of possibilities ahead of you all. It's okay to feel a mix of emotions when dealing with change. You might feel confused, frustrated, or even a little scared, and so may your child, and that's completely normal.
Giving yourselves permission to feel these emotions and acknowledging them is an important step in accepting the new changes in your life. Accepting change is much easier when you have a strong support network.
Reach out to your family, friends, and others who cares about you and your child. You are not alone, and there is a community of people who want to help you navigate this new path. Reach out to Mast Cell Action for more support and information.
Remember that there are things you can still control. You can control how you and your child respond to challenges, how you take care of yourself and your child, and how you both approach each day. Finding ways to make small positive changes in your routine can help you feel more empowered and gain some form of routine.
Many families find that sharing information with those around them is key to ensuring their child has the right support in place. Do not be afraid to advocate for your child and help others to understand what they need.
Talking about MCAS
MCAS is complicated and talking about it can be difficult – trying to tell others about something we haven’t quite got our own head around can be tricky!
We hope that the resources we have developed to help break down some of the complexities associated with MCAS will help, and also check out our social media channels for simple graphics that can be shared to help raise awareness and educate people about MCAS and what it is like to live with MCAS.
Our Casper storybook and cards have been designed to help families talk about MCAS and the feelings that might be associated with living with MCAS. You can order your free copy by emailing denise@mastcellaction.org.
Share with friends
Encourage your child to tell their friends about MCAS. They might not understand it all, but they'll understand if your child isn’t feeling well and might even know how to support your child when they are not feeling their best.
There may be times when your child can’t join in with their friends or can’t go to a friend’s house if there are triggers in the environment. Finding alternative ways for your child to enjoy time with friends – such as a safe picnic at the park or a playdate at your house can help your child to enjoy social time with their friends safely.
For help in talking to your child or their peers about MCAS, order your free copy of our storybook for children with MCAS; Casper the Chameleon written by our very own Director of Operations, Joy Mason!
Family
Sharing information with your family can help them to understand why your child may be feeling unwell or why they may not be able to do certain things. Let them know when your child is not feeling well and work together to find other ways of connecting or enjoying time together.
Finding alternative ways to enjoy time together is really important as it will enable your child to socialise and have healthy relationships while staying safe.
If family members are not supportive, or don’t understand or appreciate what your child is going through, it may help to direct them to our resources or to our social media channels so they can understand more about the impact MCAS can have on the lives of those affected.
Our parent support leaflet was developed to help support parents and carers of children living with MCAS. It provides suggestions for how to care for your personal mental wellbeing whilst caring for someone with MCAS, and shares ideas and suggestions for how to communicate and support each other as a family.
School
If your child needs extra help at school you could use our Freedom Kit to help caregivers understand your child’s symptoms, triggers and any support they can put in place to help them in the school environment. Having regular meetings and communication channels in place to speak to the school about your child’s needs can really help. If things don’t go to plan, talking it over and making a plan for next time can help to keep your child safe at school.
It can sometimes be difficult to advocate for your child in a school or childcare setting, but we hope that our freedom kit will help to bridge some of these difficulties for your family.
If you're stuck on a particular problem, come along to our parent and carer zoom session or share in our Facebook support groups and you may find someone who has found a solution!
Having fun despite MCAS
It can be tough to live with MCAS, but we can still have fun and enjoy life! Making sure we prioritise our well-being as well as having a good time could be a good balance.
Celebrate Victories: Even small victories are worth celebrating! Did your child go a whole day without any severe symptoms? That's great! Maybe they conquered a new medication they didn’t want to take or made it through the school day. That’s brilliant! Celebrate the fact that you are all adapting and learning and mark those small wins.
Each step you take toward understanding MCAS and managing it is a victory worth celebrating.
Do what you love: MCAS might bring its challenges, but it doesn't define your child. If it’s safe, encourage them to keep doing the things they love, whether it's drawing, playing games, or hanging out with friends. Sometimes the things they love might have to be adapted to find a safer way for your child to enjoy them, but if the new adaption allows them to continue to participate then this is a worthwhile compromise!
Change might bring new limitations, but it can also open new possibilities. As your child adjusts to life with MCAS, you might discover they have new interests, hobbies, or ways to connect with others who share similar experiences. Every new adventure they embark on is a chance to learn, grow, and find joy.
Stay curious: Learning about MCAS and how it affects your child can help you feel more in control. Ask your doctors questions – knowledge is power! Remember, you are superhero's navigating through a special adventure. Your child is brave, strong, and they’ve got a support squad cheering them (and you!) on every step of the way.
Community and Resources
Joining our support groups for parents of children with MCAS will connect you with others who share similar experiences and may be on a similar journey. These groups provide a safe space to ask questions and share insights and experiences.
We have developed lots of resources to help children and families to navigate the complexities associated with having MCAS and to help you to share information about your child’s needs.
Having to advocate for your child at school, during social activities and at medical appointments can feel daunting, but with time, you will come to understand some of your child’s unique triggers and symptoms and be able to share these so that others can care for them too. Educating others about MCAS can help to create a supportive environment for your child. You may find our Freedom kit helpful when communicating your child’s needs to their school or childcare provider.
Casper the Chameleon
Our Casper pack was designed to help families living with MCAS to have conversations around MCAS and the feelings associated with living with chronic illness. The pack includes a series of work cards which help families to approach different aspects of living with MCAS, with a key focus on mental health and wellbeing.
You can order you free copy by contacting denise@mastcellaction.org.
“We're in a tough place at the moment where both our sons have crashed with a huge flare-up of their mast cell disorder. Casper was there to help us open the conversation with them about why their bodies are feeling the way they are and to help them find the words and space to tell us how it feels for them.”
Access support
We know that caring for a child with MCAS can bring about challenges and uncertainties.
This information is designed to offer you valuable insights, practical tips, and emotional support as you navigate this journey with your child.
MCAS can present numerous challenges, but finding a supportive community can provide solace and valuable insights, the sense of belonging and shared understanding can be a lifeline. Within our community, you'll discover a wealth of knowledge, practical tips, and emotional support, helping you navigate the complexities of MCAS.
Together we can empower each other to be resilient advocates for children with MCAS, fostering an environment of love, understanding, and hope in the face of this challenging condition.
Virtual Support Sessions
Our parent and carer peer support sessions run fortnightly on Wednesdays, alternating between 11am and 7pm sessions.
These sessions are led by dedicated volunteers Penny and Karen who not only have first-hand experience of living with MCAS, but also with caring for children with MCAS.
These sessions provide a valuable opportunity for parents and carers to come together, connect with others, and receive support in navigating the challenges associated with MCAS.
Find out more or book your place here.
You are not alone. We are here for you
Remember, you are not alone, and together we can navigate the most difficult parts of our journeys.
Living with MCAS as a family can present challenges and difficulties, but we hope the information shared above is helpful to enable you to plan a way for your family to manage the complexities of life with MCAS. Life with MCAS is a marathon, not a sprint and taking small steps can help to build a strong foundation for your family. Remember, even on the toughest days, you're making a difference. Your love, patience, and dedication are shaping a brighter future for your child. Together, we'll navigate the highs and lows of MCAS, celebrating victories big and small along the way.
None of this information is intended to be medical advice, please do speak to your health professionals prior to making any changes.
You are not alone. Mast Cell Action is here to stand beside you, offering support, understanding, and a community that cares. We are here for you and your family, so please do reach out if you need more support or more information.
Become a friend
Sign up to become a Friend of Mast Cell Action so we can keep you up to date on our progress and on how to get involved in our latest campaigns and initiatives.
Donate
Mast Cell Action relies entirely on the generosity of people like you. Please make a donation now and together we can make a difference to those affected by MCAS.