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Sleep & Down syndrome - Shared screen with speaker view
Martha Gascon
18:29
buenas tardes no hay traduccion a español?
Caroline Okorie, MD
20:07
lo siento, no tenemos subtítulos en español. pero deberíamos intentar esto la próxima vez.
Carolyn Swanson
21:14
I second the idea of doing one of these in Spanish. I run a support group for families touched by the Magic of Down Syndrome and we have Spanish-speaking families that would benefit. Thank you in advance for hosting one of these in Spanish! XOX
Corrie merchant
21:33
Closed captioning could also be helfpul
Martha Gascon
21:43
gracias por responder
Caroline Okorie, MD
22:12
Thank you for the great suggestions. We will be sure to consider these for future events. We will also consider how to set up closed captioning ahead of time too. thank you!
Jessamy Tang
23:27
Please let us know what other webinar topics you would like to hear about
Martha Gascon
30:00
seria excelente si para la proxima si para la proxima reunión tuvieran traduccion a español se benificiarian gracias
Sharla Hank
30:52
Hello. I apologize for being late. Will the recording be shared after this webinar? Thank you for hosting today.
Caroline Okorie, MD
31:33
Yes, the recording will be available on the Matthew Foundation site and the Stanford Down Syndrome Center site. Thank you for joining!
Caroline Okorie, MD
33:21
Si. Planeamos tener una sesión futura en español.
Sharla Hank
33:45
Thank you.
Stephanie Rodriguez
34:39
Does sleep apnea make it worse if so how can you make it better
Joanna Desjardin
35:20
Is that the same if you use Melatonin?
Caroline Okorie, MD
35:54
Thank you for your question. Are you asking if sleep apnea makes sleepiness worse? Yes, if you have sleep apnea you are more likely to feel more sleepy during the day because sleep apnea reduces sleep quality.
Caroline Okorie, MD
36:31
There are various treatments for sleep apnea. They can include CPAP. We can certainly speak more about treatments soon.
Carolyn Swanson
37:08
What is the recommended age-range for kids with DS to have their first sleep study?
Joanna Desjardin
37:10
Will you also be speaking about Inspire for sleep apnea?
Dowanna Whitfield
38:19
Are there options if the adult with DS will not wear
Dowanna Whitfield
39:03
Options if adult with DS will not wear a cpap?
Katie Cunningham
40:35
Why is it that sleep issues are more common for people with Down syndrome?
Serene Vargas
41:30
What other possible reasons should we look at besides sleep apnea or low iron?
Bobbie Williams
41:44
You mentioned snoring is not normal. Therefore, should my 33 year old son with Down syndrome have a sleep study done?
Serene Vargas
41:50
Our son wakes up and has trouble going back to sleep.
Gini Nichols
43:16
are there interventions to help
Gini Nichols
44:03
sorry… hit enter too soon. interventions to help with low tone or that just makes the apnea more likely?
Kris Benson
44:49
My son with Ds, with no support, takes hours to fall asleep and then will wake up 5-8 times a night and be completely wide awake for hours each time. Right now, I have him on a regime of clonidine to help him fall asleep and phosphotidyl serine, l-theanine, and Nutrivene Nighttime to help him stay asleep. I hate that I have to drug him up so much. I fear it is not quality sleep. What would be next steps to start moving away from this.
LM
45:23
OSA?
Jessamy Tang
45:54
OSA - Obstructive Sleep Apnea
Serene Vargas
47:05
It's 4 years old for sleep study.
Leslie Versfelt
47:07
I think its age 4
Lindsay
47:58
My 4 year old son just did a sleep study. What a terrible experience.
Carolyn Coni
48:07
If individual is mouth breather, would use of a chin strap along with cpap be helpful.
Rafael Pelayo, MD
48:29
Come to the Stanford Sleep Disorders next time!!
Kris Benson
49:33
telemedicine helps us as parents get more access to doctors who can provide real answers and drive real actions too. so thank you for doing that!
Lisa Flannagan (she/her)
51:38
Why should we consider an operation with a 20-50% success rate? Pros and cons?
Rafael Pelayo, MD
53:56
Even a 20% improvement in how a person sleeps may make a difference for the entire family. You need to work with an ENT surgeon with a good track record for safety in children with this condition. Most medical school based surgeons should be able to do a good job.
Lisa Flannagan (she/her)
55:50
Even at the loss of the tonsils?
Marissa Mahon
57:20
Lingual?
Liesl Wilson
58:26
I posted a question in the “Q & A” screen….
Rafael Pelayo, MD
58:59
palatine tonsils are the usual bottleneck, not lingual tonsils. But lingual tonsillectomy can be done later if need be.
Marissa Mahon
59:48
Can you get MRIs still with inspire? Do we anticipate it to be available at an earlier age?
Jessamy Tang
01:03:43
10 minutes left
Judy Smith
01:03:56
Would y’all recommend this device?
Christie Heller
01:03:56
Kris Benson-we are living something very familiar!!! Have for years. Just going to sleep is a struggle…as is sustaining sleep. In general, all of it is difficult
Carolyn Swanson
01:05:02
If we have time to chat about the pap machines - I know that some have been recalled because of the insulation foam deteriorating and potentially creating harm to users. I am worried that our pap machine may suffer from this even though its not part of the initial recall. Any insight on these devices and their safety?
Tanigami Linda
01:05:36
What was the name of the drug you were mentioning?
Carlos Cordoba
01:05:50
can write the medicine name on the chat
Paul Cornick
01:07:36
sorry joined late where will the recording be found
Jessamy Tang
01:09:19
The recording (missing 1st few minutes) will be on the Stanford Down Syndrome Research Center website, dsresearch.stanford.edu, and The Matthew Foundation. www.thematthewfoundation.org. The slides will also be posted there. It should be posted tomorrow or shortly thereafter.
Paul Cornick
01:10:08
thanks
Gina Musielski
01:11:08
Our CPAP is part of the recall- the REMstar. Phillips has not stated they will replace these models- they only say stop using the machine. Do you have any guidance for us on this.
Jessamy Tang
01:11:20
5 minutes
Serene Vargas
01:11:44
what are the other possible reasons for not being able to go back to sleep besides sleep apnea?
Gina Musielski
01:12:07
WE actually stopped using the machine because my daughters nose area was sooo raw it wouldn't heal.
Marissa Mahon
01:12:48
Ferritin under 50 was what I was told?
Serene Vargas
01:13:05
His iron levels are very good.
Marissa Mahon
01:13:45
Do you all do consults? We need help and have done studies (dise) with imaging
Lindsay
01:13:51
Could it be GERD?
Marilyn Hemker
01:13:53
Please send us contact info on "ERJ" that can do face masks using a 3 d printer.
Paul Cornick
01:14:40
sorry joined late might have been said but make sure tonsils and noids are ok
Carolyn Swanson
01:16:00
Any chance that Dr Okorie is accepting patients? We live about 1.5 hours from Palo Atlo...
Serene Vargas
01:18:27
how can we get our questions answered? I asked quite early in the call but no answers are forth coming?
David Cheung
01:19:38
Thank you. Where can we get in touch with both doctors who spoke tonight ?
Judy Smith
01:20:03
Thank you for your time!
Joanna Desjardin
01:20:18
Thank you! This was very helpful.
Jenny McGinnis
01:20:23
Thank you so much, very informative panel!!!
Shirley Rodriguez
01:20:35
Thanks very helpful
Martha Gascon
01:20:52
gracias
Lindsay
01:20:55
Thank you so much. Very informative. Need a longer chat next time!
Karyn Weiss
01:20:56
Thank you for all the information.
Gina Musielski
01:21:02
Thank you.
claudia moreira
01:21:04
Thank you!
Katie Cunningham
01:21:08
Thanks so much!
Sharla Hank
01:21:10
Thank you
Michele
01:21:11
Thank you!
Lynda
01:21:15
Thank you so very much!
JASEELA
01:21:27
Thank you .this was very helpful lesson. I am research scholar .i got more information
Carlos Cordoba
01:21:31
Thank you for everything
Hanaa
01:21:33
Thank you!
David Cheung
01:21:44
Thank you