Why regular medical check-ups are important and how to prepare for them

Medical examinations, check-ups, follow-ups and interventions are part of everyday routine for children with neurometabolic and neurotransmitter diseases. However, they are still challenging and stressful. In this text, we share our experiences hoping that some of the practical tips will help you prepare and that the experience will be useful and as enjoyable as possible.

It might be helpful to:

redovne kontrole1. Keep a diary! Write notes in a diary book or a phone, however is most convenient for you, just write down the significant behaviors you notice about your child. Here are some examples from my diary, "when she is tired, she pulls her right leg", "has difficulties falling asleep", "reports a feeling of nausea after taking the meds", "OGC crises are more frequent", "she oversweats during the night". Don't forget to write down positive changes, such as "sleeping better", "eating better", "sitting independently", "saying the first words", "walking up the stairs independently". Also pay attention to the medication regimen, whether you think the doses are too close or maybe the child is showing some symptoms of fatigue before the next dose. This will be important information for the specialist, who will adjust the doses to the specific needs and requirements of each child individually.

2. Schedule an appointment on time, write an appointment in the calendar, attach a reminder to the refrigerator or some visible place. Think about logistics, whether you are close enough to walk to the hospital or need to use your car or city bus transport. Would you rather go alone with your child or would it mean to you to have company. Relatives, friends and neighbors are often very willing to help, you just need to let them know in time.

3. Prepare to wait. Despite the scheduled time of the examination, it happens that the examinations take longer, that you wait due to urgent admissions etc. The waiting rooms are our second home, so bring a bottle of water and a snack for the child, but also for you. Prepare spare diapers (if worn) and spare clothes for the child. Bring a toy, a book, a favorite toy bear to keep the fear away… Always have a doser of medicine with you (which I believe you do, but it's worth mentioning).

4. Bring the folder with the most important reports. Help doctors by being ready to show reports. Teamwork is important, and you are an important part of that team!

5. Take some time to explain to the child what to expect, in a way that is appropriate for the child's age. Show understanding for children's fear and discomfort, build a relationship of trust. Don't lie but don't scare a child. Phrases that proved useful to us are: "you will feel a burning but it doesn't hurt badly and it will be over in a few seconds" or "in this follow-up we just talk, there will be no interventions of any kind", "we will stay in the hospital for a few days and make a movie night at home afterwards (or something your child loves)“. Each child is individual and if your child doesn't respond properly to check-ups, you might seek professional advice and help. Over time, the follow-ups become more enjoyable and serve as a forum for socializing and sharing experiences.

6. Ask questions. Ask the doctors everything you are interested in (write down the questions in advance and save them in your phone or diary), talk about the treatment plan, about the outcomes or side effects that may occur.

7. Bring a phone charger.

8. It's okay if you forget something, it happens to everyone ?