Supporting our kids
Trying to explain to your children that you have hypopara can be tough. However, there are practical ways to show your kids how to help you manage your condition. These include staying hydrated by regularly drinking water, or in a calcium crisis, using Vitamin C to help with the absorption of calcium. So drinking orange juice and eating cheese, for example.
I asked other hypopara mums in the Facebook group for their tips on how to teach their kids while reassuring them. Here are Mari from Spain, Amber from Canada, Stephanie from Scotland and Fiona from Northern Ireland.
Fiona
Kids may not understand that you need time to rest, and why. Depending on their age, give them bite-sized nuggets of information which doesn’t scare them, such as: ‘Mummy loves you, but she needs to rest for an hour today.’
If you’re wondering how to encourage them to respond in case Mummy has a hypopara emergency, the answer is to keep it simple, memorable, and reassuring. You may want to stick a note on your fridge with a short list of what to do: call Daddy (or another responsible adult) and Emergency services.
Put up a detailed list on the door of your medicine cabinet explaining your medical history, what you take, and the quantities. Ensure a responsible adult (a trusted friend, colleague, relative or neighbour) also has a copy. You may want to give them access to the emergency guidelines by the Society for Endocrinology on managing acute hypocalcaemia in adult hypopara patients, although these are primarily written for medical professionals.[4]
[4] https://ec.bioscientifica.com/view/journals/ec/5/5/G7.xml
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Stephanie
Try to tell your kids about the condition from an early age. Teach them how to ring Emergency Services from your phone, and how to show your medical ID stored there. This is invaluable in case you have a calcium crisis and are non-responsive.
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You could also explain to your kids that you take ‘special medicine’ every day to keep you healthy. As your children get older, they will understand more what the symptoms of low calcium look like, and know to bring you a glass of milk and Calcichew.
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Even though you may go through spells when life can be tough, always make an effort to express your appreciation to your kids for their understanding. They are your precious little support team at home.
Amber
When they’re old enough to understand, explain to your kids that you have a chronic condition which you’ll have for the rest of your life. That only a tiny percentage of people have this condition.
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You could tell them this condition affects your entire body, and could target your brain, kidneys, heart, bones and muscles. As a result, you can explain how this affects you: with severe fatigue, brain fog, bone pain and muscle cramping. Perhaps ask your kids to help out more around the house with chores.
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If you’re at a risk of seizures, show your kids how to call Emergency Services if that happens, and to make sure you don’t bang your head whilst having one. You can reassure them by explaining that having a seizure will look scary, but they need to allow it to end of its own accord.
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Another tip is to wear a medical bracelet, including all vital information and emergency contacts.
Mari
Explain to your kids about the importance of calcium and how it’s not just important for your bones. That when Mummy feels tingly, (a side effect of hypoparathyroidism), a vital thing she can do is drink a glass of milk or eat calcium-rich foods. These include dairy products, sardines or pilchards, a drink with added calcium, leafy green vegetables such as curly kale or okra, and bread or any baked goods with fortified flour.
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Another important precaution is to have a locked emergency medical box which your children can open when needed, stocked with calcium tablets and Alfacalcidol or Calcitriol.
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If you need to go to hospital, reassure your kids that the blood tests, injections or IV calcium drip are nothing to be scared of: they’re all keeping Mummy healthy and resilient.
