Ask Smile E.

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.? 

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

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

- Visit Smile E. Turtle's Amazon Wishlist; https://www.amazon.com/hz/wishlist/ls/KNO9BAJR74I4?ref_=wl_share

- For more information on how you can donate, please visit our "Donation" page to check out our "Do & Don't policies at; https://pcdsmiles.com/support-pcdsmiles/donations2

- To sponsor a PCD Smiles Cheer-box today!

https://store.pcdstyle.com/21-donations

- To shop for your “Official” turtle care ribbon gear today!

www.pcdstyle.com

or

https://www.smileecove.com/stores/cove

Thank you for your consideration!

#PCDsmiles  #PCDstyle  #PCDsmilesCookbook  #PrimaryCiliaryDyskinesia  #SmileEcove  #TurtleTalk  #TurtleTalkCafe  #PCD#PCDchallenge

#PCDawareness to help find a #cure4PCD!

Dear Smile E.

Do you know of any PCD patient only support groups on Facebook? I have questions and concerns that I don’t want my family to see. Thank you!

Signed,

Privately PCD

 

Dear Privately PCD,

I can understand your need for privacy from those without PCD. We with PCD all have questions from time to time that we need the experience of someone who has been there. It’s also nice to be able to ask pertinent questions without the shocked responses from non family members and other members of the community. There is a private PCD adult patient only group on Facebook. You have to be over eighteen years of age and be the person who actually has PCD to join. Due to Facebook privacy settings you will need to be invited to the group by a current group member that you are friended with on Facebook. Feel free to drop our me a private message through our Facebook page and I can get you set up with someone to help facilitate your invite to the group.

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; https://www.amazon.com/hz/wishlist/ls/KNO9BAJR74I4?ref_=wl_share

- For more information on how you can donate, please visit our "Donation" page to check out our "Do & Don't policies at; https://pcdsmiles.com/support-pcdsmiles/donations2

- To sponsor a PCD Smiles Cheer-box today!

https://store.pcdstyle.com/21-donations

- To shop for your “Official” turtle care ribbon gear today!

www.pcdstyle.com

or

https://www.smileecove.com/stores/cove

Thank you for your consideration!

#PCDsmiles  #PCDstyle  #PCDsmilesCookbook  #PrimaryCiliaryDyskinesia  #SmileEcove  #TurtleTalk  #TurtleTalkCafe  #PCD

#PCDawareness to help find a #cure4PCD!

Dear Smile E.

I see sinus rinsing discussed in the PCD Facebook groups all the time. How do I know if sinus rinses are for me? And do they really help with PCD, because my ENT has never brought up the subject.

Signed,

Stuffed Up

 

Dear Stuffed Up,

Think of saline rinses for your sinuses as airway clearance for your sinuses. However you should be evaluated by an ENT before starting them because it’s common for PCD patients to have underdeveloped sinuses that could potentially lead to the saline getting stuck in certain parts of the sinuses, which then becomes a breeding ground for additional infections. Your ent should make sure your sinuses are open and clear of obstructions to allow the rinse to flow freely back out of your sinuses.

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; https://www.amazon.com/hz/wishlist/ls/KNO9BAJR74I4?ref_=wl_share

- For more information on how you can donate, please visit our "Donation" page to check out our "Do & Don't policies at; https://pcdsmiles.com/support-pcdsmiles/donations2

- To sponsor a PCD Smiles Cheer-box today!

https://store.pcdstyle.com/21-donations

- To shop for your “Official” turtle care ribbon gear today!

www.pcdstyle.com

or

https://www.smileecove.com/stores/cove

Thank you for your consideration!

#PCDsmiles  #PCDstyle  #PCDsmilesCookbook  #PrimaryCiliaryDyskinesia  #SmileEcove  #TurtleTalk  #TurtleTalkCafe  #PCD

#PCDawareness to help find a #cure4PCD!

Dear Smile E.

My mother in law is huge into holistic medicine and she wants me to start turmeric. Is there any research into turmeric and primary ciliary dyskinesia? Is it safe? Will taking turmeric actually help my respiratory inflammation?

Signed,

Holistic In-Laws

 

Dear Holistic In-Laws,

The curcumin in turmeric has antioxidant and anti-inflammatory effects which can be beneficial for supporting lung function. A 2020 study involving mice showed scientists that turmeric reduced the inflammation in the lungs of mice giving them better lung function. Turmeric also decreased tumors elsewhere in the bodies of mice. However there are no human studies that have reproduced this result. Mice studies are a good starting point for research, however a good number of times the results see in mice studies as well as other animal studies frequently fail to translate to humans due to various factors. To date there are few pulmonary studies involving curcumin. And the majority of claims that turmeric is great for lungs comes from people’s extrapolation of mice studies that show turmeric’s anti-inflammatory effects.

 

If you’re interested in alternative medicine and or combining alternative medicine with your current treatment plan I highly recommended that you speak with your medical team before taking on this task on your own, you will be surprised how many doctors are open to the idea of combining alternative medicine into their patient’s treatment plans.my current team is great about this, and are very supportive of my desire to combine alternative medicine into my current overall treatment plan. It doesn’t hurt to ask. And it could actually harm you not to ask your team. Stay safe, be smart, and Turtle On my friend!

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; https://www.amazon.com/hz/wishlist/ls/KNO9BAJR74I4?ref_=wl_share

- For more information on how you can donate, please visit our "Donation" page to check out our "Do & Don't policies at; https://pcdsmiles.com/support-pcdsmiles/donations2

- To sponsor a PCD Smiles Cheer-box today!

https://store.pcdstyle.com/21-donations

- To shop for your “Official” turtle care ribbon gear today!

www.pcdstyle.com

or

https://www.smileecove.com/stores/cove

Thank you for your consideration!

#PCDsmiles  #PCDstyle  #PCDsmilesCookbook  #PrimaryCiliaryDyskinesia  #SmileEcove  #TurtleTalk  #TurtleTalkCafe  #PCD

#PCDawareness to help find a #cure4PCD!

Dear Smile E.

I’m stuck in this hospital all alone, without any family. I stumbled upon PCD Smiles cheer package program in one of the Facebook groups. I was wondering if I could request my own cheer package or do I have to be nominated for one by someone else? I don’t have any friends or family, I’m all alone and a cheer package sounds nice right about now.

Signed,

Lonely PCD

 

Dear Loney PCD,

You can certainly request a cheer package for yourself, absolutely. I hope that you are doing well. Please reach out privately if you need to talk. I’m here anytime for anyone who needs a chat or to feel comforted. Our cheer packages are for PCD patients just like yourself. Anyone can submit a request for a hospitalized PCD patient or a PCD patient just returning home from a recent hospitalization, no matter their age.

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; https://www.amazon.com/hz/wishlist/ls/KNO9BAJR74I4?ref_=wl_share

- For more information on how you can donate, please visit our "Donation" page to check out our "Do & Don't policies at; https://pcdsmiles.com/support-pcdsmiles/donations2

- To sponsor a PCD Smiles Cheer-box today!

https://store.pcdstyle.com/21-donations

- To shop for your “Official” turtle care ribbon gear today!

www.pcdstyle.com

or

https://www.smileecove.com/stores/cove

Thank you for your consideration!

#PCDsmiles  #PCDstyle  #PCDsmilesCookbook  #PrimaryCiliaryDyskinesia  #SmileEcove  #TurtleTalk  #TurtleTalkCafe  #PCD

#PCDawareness to help find a #cure4PCD!

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