Dear Smile E.

Our PCD child just got their diagnosis this spring. My wife and I are wondering if trick or treat is a good idea for our three year old. Is beggars night something that is safe for my child?

Signed,

New PCD Parent

 

Dear New PCD Parent,

While trick or treat can be quite an undertaking for a healthy child it can also be exhausting for a child with primary ciliary dyskinesia. Trick or treating can be a funny activity for any person at any age and is a great way to get a bunch of unintended exercise in as well. As far if it is safe for someone with primary ciliary dyskinesia, rets assured that there is no scientific evidence that says going trick or treating is dangerous for a person with PCD. However as always run this question by your child’s medical team for their impute. Your child’s medical team will have your child’s exact overall health picture available to them when making a decision like this. So I’d call your pulmonary nurse and ask them, they won’t mind the question for your exact situation.

There are some things to keep in mind when trick or treating with anyone with pulmonary and or cardiac issues. Chose a costume without a face mask to optimize breathing capabilities. If using face makeup, do a test run of makeup or a test patch on your loved one’s skin to be sure there isn’t any allergic reactions to the face makeup or other make up. You would not want to be halfway through your evening and experience an allergic reaction. Also observe your child throughout the activity and take note of any compensation tactics that they start to use before telling you they are struggling. As a child I’d rather fake I was okay then tell my guardians that I was struggling, because I knew they’d call the activity off for the night. Be sure to communicate to your PCDer and allow them to feel comfortable with being honest with you where you won’t cancel the activity but instead might offer a rest break or an alternative. I didn’t connect my guardians calling off an activity or ending an activity early as anything but a punishment to me, so therefore I was less likely to complain until the activity was completed. The other thing to keep in mind when choosing a costume is to be sure it is lose fitting on your PCDer. Tight fitting clothing can increase your PCDers discomfort and exacerbate their breathlessness. And lastly have water to drink and be prepared to offer rest breaks often to encourage confidence in your PCDer that they can do the activity successfully. Above all go and have a great time, and do not forget to encourage coughing and spitting out that mucus.

Happy Halloween!

Yours Truly,

Smile E. Turtle

 

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