Often, our articles here on the blog are geared toward adults who themselves are fighting a disease, looking for better treatments or simply some advice and support. We have patient-tested IBD life hacks and quite a lot of posts addressing different aspects of living with a disease and looking for the right treatment.

But what if you’re not the one whose health’s affected? What if, instead, you’re trying to figure out how to take care of your child – how to make the best decisions for their treatment, how not to go completely bankrupt, how to stay strong and be able to provide the support they need, while not going insane yourself?

We wrote a while ago about children in clinical trials and just last month we shared the story of Holden and his brave mother who took the chance to enroll him in a trial for Crohn’s disease. But up until now, we haven’t really addressed the full spectrum of caring for a child with a chronic illness.

All of the ups and downs, financial concerns, treatment options, self-doubt, the strain on relationships and everyday challenges make up your journey as a parent of a kid with a chronic disease and we at FindMeCure want to be there for you. If you’re under a lot of pressure and some real-life advice and support comes just at the right time for you, keep on reading.  


Learn about your child’s condition


This one is a no-brainer and something you’re most probably already doing – obsessively. But while scrolling through every page that pops up when you search your child’s disease, we want you to keep a few things in mind.

As appealing as quick-fixes may sound, it is very unlikely that a herbal tea will cure your child’s asthma, IBD or diabetes. We get it – on some level we all want to believe in simple solutions that can make all of our worries instantly go away. But when it comes to your or your child’s health, only trust sources that provide a multi-faceted point of view without the promise of quick results.

Medical or scientific journals, medical professionals and researchers should be your primary source of information. Now, you don’t need a scientific degree in order to grasp what’s going on with your child’s body and how the illness is likely to progress, but you do need to ask the tough questions.

Information provided to patients is sometimes insufficient, confusing or over-simplified. So don’t be afraid to go as in-depth as you feel it’s necessary with your child’s physician – you deserve all the answers they can give. But in order to get them, you need to be prepared with the right questions, so we made a list for you:

  1. How is the illness expected to progress?
  2. What dietary or lifestyle changes could benefit my child’s health?
  3. What other professionals can we involve in the treatment team?
  4. What are the treatment options? Even ones currently under investigation?
  5. What resources are available to me and my child? What kind of support can we receive?
  6. In what exact ways will our lives change? How much time can we expect to spend in a hospital or other health institution? What activities will my child have to give up or limit? What side effects should we be prepared for?

Go to your child’s next doctor’s appointment equipped with all the questions that are important to you and never stop seeking more information. If you read about a new treatment being developed or having recently received FDA approval, ask about this too. Sometimes patients don’t get access to the newest treatments simply because they don’t ask for them. So ask.    


Address all of your concerns about money and logistics


Taking care of a child with chronic illness can not only be daunting and emotionally taxing but also quite hard on the household budget. It’s not only the cost of treatment that can be a challenge for some families, depending on their insurance but also things like transportation expenses, daycare centers, hospital stays… the list goes on.

But before you let the stress of merely thinking about all the money you’ll have to spend make you go crazy, figure out which of these expenses are really necessary and which ones you can minimize or cut out entirely.

If you can’t afford to stay at home because your salary is a huge part of the family finances, which, by the way, doesn’t make you any less of a good parent, think what other options are available. Some kindergartens and schools are way better at catering to specific health needs than others, so do your research carefully. You might end up spending less by enrolling your child into another daycare center or school instead of hiring someone to look after them, so do the math.

And in some cases, your child can keep going to the same school and you’ll just have to make sure their teachers, the school nurse, and counselor are aware of their health condition. So it doesn’t always have to be a radical change in environment.

You can also talk to your insurer, accountant or financial adviser to make an action plan regarding medical expenses. Chances are, you won’t have to worry about the cost of treatment unless it’s the most recent fresh-out-a-trial medicine or a therapy your insurance just doesn’t cover. However, in these cases, you can consult your primary physician about suitable alternatives or payment plans that make the treatment more affordable.

Or, if you’re set on your child receiving the most innovative treatment for their chronic disease and a whole new level of care, think about clinical trials. Make sure you understand which costs are covered by the trial sponsor and which ones are on you. In most cases, it’s transportation and other non-treatment-related costs you’ll have to think of. You may also want to look into the post-trial access policy of the clinical trial you’re interested in.         


Be the parent you always wanted to be


Your kid is, after all, still a kid. Whether they have to battle a chronic illness on top of all the other pains, discomforts, challenges, surprises and joys of growing up, they need the same things any other child needs from their parents.

Involve them in the decision-making as much as it’s appropriate for their age to show them they have control over their body and life. It’s important to emphasize that they have a say in what happens to them because a chronic disease can be experienced as painfully disempowering and victimizing. Your child may start to feel disconnected from their own body and even begin to mistrust their feelings and sensations.

Be even more diligent in empowering them and teaching them responsibility – let them make more choices about what they want to wear or eat (as much as their diet allows), encourage them to pursue a hobby that gives them a sense of accomplishment and serves as a creative outlet, have conversations with them about their feelings: their questions and worries, their fears, their wishes. Don’t be afraid to talk about their illness in an open and honest way, without sugar-coating but still with a sense of meaning and hopefulness.   

And don’t forget to have fun with your kid. You want to give them the message that life can still be vibrant, colorful and full of joy, purpose, and contentment, and their chronic disease is not a life sentence of limitations, restrictions, and pain.   


Prioritize self-care


As a parent, you most probably live by the statement that your child comes first. Maybe you even feel like you’re ‘stealing’ time from your child when you go out for a cup of coffee with a friend or, God forbid, a drink at a bar.

But here’s the thing – you’re only as nurturing as you have nurtured yourself. You really cannot pour from an empty cup and therefore, you need to fill your own cup first in order to even be in a condition to fill anybody else’s.

By prioritizing self-care you also set a good example for your child. You teach them that in order for them to be capable of caring for others they need to take care of themselves first. Because at the end of the day, no one benefits from you being exhausted, cranky and emotionally drained.

Take at least half an hour a day to exercise, call a friend or a counselor, have a bath, watch your favorite show with a glass of wine or simply nap. Your child needs you well-rested, calm, replenished and optimistic. But you can only be those things if you take the time to look after yourself first.  

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