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CourtneySchmidt
@CourtneySchmidt

Posts: 57
Joined: Apr 16, 2013

For those of you who have children with asthma, what is one [...]

Posted by @CourtneySchmidt, Sep 23, 2014

For those of you who have children with asthma, what is one piece of advice you wish you’d been given when your child was first diagnosed?

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MichellesJoy
@michellesjoy

Posts: 13
Joined: May 31, 2010
Posted by @michellesjoy, Jan 13, 2016

It’s not really asthma-specific but I wish someone had told me how important note-taking or recording info from doctor visits would be. It’s just too hard to remember everything otherwise!


albanymom
@albanymom

Posts: 8
Joined: Jan 15, 2016
Posted by @albanymom, Jan 14, 2016

@michellesjoy That’s so true about the note-taking! My little girl was born prematurely and the amount of information I had to remember before taking her home was overwhelming! It would be great if there were a better way to get all the information you needed to remember than from the speeches in the room or from a pile of papers. Why can’t they just email you all you need to know? I’ve lost half the papers they sent me home with already!


CourtneySchmidt
@CourtneySchmidt

Posts: 57
Joined: Apr 16, 2013
Posted by @CourtneySchmidt, Jan 14, 2016

@albanymom That is such good information for us to know. Our goal for this site is to help connect patients and families but also to provide helpful resources. I wonder if some of these things could be posted on this site for new parents/ parents of premature babies. What kind of information did you feel was important and wanted to keep track of and what do you think would be helpful for others if it were posted here?


CourtneySchmidt
@CourtneySchmidt

Posts: 57
Joined: Apr 16, 2013
Posted by @CourtneySchmidt, Jan 14, 2016

Hi @michellesjoy Thanks so much for that piece of advice. I would love to hear more about what has worked for you as far as note-taking and record-keeping. Do you have any tips that other parents might find helpful? I’d love to write a blog post that we can post on the hospital blog/website where we can offer good tips like this to help people make the most of their time with their doctors.


albanymom
@albanymom

Posts: 8
Joined: Jan 15, 2016
Posted by @albanymom, Jan 25, 2016

Thanks for asking @CourtneySchmidt! I think it was more about the way information was presented. It would have been great to have information summarized into checklists when possible. Sometimes you just need a refresher or the ability to find information quickly when your feeling overwhelmed. Also videos would have been great! A site where I can go in order to learn more about, or just remind myself of advice I got while in the hospital. Hope this helps!


CourtneySchmidt
@CourtneySchmidt

Posts: 57
Joined: Apr 16, 2013
Posted by @CourtneySchmidt, Jan 25, 2016

This is helpful to know. We will be uploading information and resources to share here on our Community site really soon, so perhaps that may help others who are going through similar situations.

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