Dear Smile E.

I have no support system. I mean absolutely nothing. How do I find one?

Signed,

Alone

Dear Alone,

I can totally relate to being all alone. This disorder is no picnic especially when you have no support system. If you’re connected with a PCD clinic or are being cared for at a cystic fibrosis clinic you can ask to talk to their clinic social worker. The social worker can help aid in connecting you to resources. Also you could look into joining a church community, social community, or something like that to connect with others who might be a support system of sorts. A support group is also a great place to start. I know most PCD support groups are online and it’s okay to reach out to them. Have you checked out the Adult PCD Patient ONLY group on Facebook yet? Feel free to send me a private message of Facebook and I can help you find it.

Yours Truly,

Smile E. Turtle

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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

Do you have a question for Smile E.? 

Please EMAIL your questions to; This email address is being protected from spambots. You need JavaScript enabled to view it.

And tune in next Sunday to read the latest Ask Smile E.

Join our Facebook group Turtle Talk Café today, click here.

We have several ways that you can donate to PCD Smiles;

- Visit Smile E. Turtle's Amazon Wishlist

- For more information on how you can donate, please visit our "Donation" page to check out our "Do & Don't policies.

- Or sponsor a PCD Smiles cheer package today!

- To shop for your “Official” turtle care ribbon gear today, visit PCD Style or Smile E. Cove

Thank you for your consideration!