Search found 66 matches

by curiousgeorge
Wed Jan 25, 2017 1:43 pm
Forum: Duchenne Muscular Dystrophy (DMD)
Topic: More and more mucus (DMD)
Replies: 3
Views: 1349

More and more mucus (DMD)

I seem to produce more mucus than I ever use to. What do you think could be causing this? Do you have any suggestions? My mom talked with Louie and he suggested I try mouthpiece ventilation. While I'm open to the idea, I'm not sure how this would help me out, for a short period I tried a mouthpiece ...
by curiousgeorge
Sun Nov 13, 2016 2:32 pm
Forum: Amyotrophic Lateral Sclerosis (ALS)
Topic: Recommended initial Trilogy settings for the ALS patient
Replies: 3
Views: 1143

Recommended initial Trilogy settings for the ALS patient

I am a neurologist/sleep physician. I have been involved for the last year or 2 with a multidisciplinary ALS clinic, and was looking for some advice on how to start a patient on a trilogy, and any adjustments you may make over time to the settings. Until recently, we were using straight BIPAP, and a...
by curiousgeorge
Sun Nov 13, 2016 2:29 pm
Forum: Duchenne Muscular Dystrophy (DMD)
Topic: DMD patient using sip technology
Replies: 5
Views: 1415

Re: DMD patient using sip technology

I think it might well be that nasal leakage and mouth seal are an issue although a nose clip didn’t seem to help. The problem with the ‘tongue touch’ is that after the touch he then struggles to coordinate an inspiration, presumably the leakage from lips and nose contribute to this. I will try him w...
by curiousgeorge
Sun Nov 13, 2016 2:27 pm
Forum: Duchenne Muscular Dystrophy (DMD)
Topic: DMD patient using sip technology
Replies: 5
Views: 1415

DMD patient using sip technology

I am keen to provide mouthpiece ventilation (MPV) for a DMD patient. I have tried and failed to get him using the ‘sip’ technology provided by Phillips simply because the patient cannot coordinate the ‘sip’ followed by an inspiration. I imagine that you have significant experience of using MPV, in a...
by curiousgeorge
Sun Nov 13, 2016 2:19 pm
Forum: Spinal Cord Injury
Topic: C6 injury EXTUBATED!!
Replies: 2
Views: 1709

C6 injury EXTUBATED!!

Our patient still has a c6 level. After about 2 weeks of ventilation on 21% O2 with cough assist and high PS I extubated her today. She did very well during the day on mouthpiece ventilation and required only occasional MIE. We will put her on mask ventilation for the night. I put her on PS 20 equiv...
by curiousgeorge
Sun Nov 13, 2016 2:11 pm
Forum: Nemaline Myopathy
Topic: 7.5 month old Nemaline myopathy - failure of NVS?
Replies: 1
Views: 1501

7.5 month old Nemaline myopathy - failure of NVS?

We wanted to ask you for your advice about our son's situation. He is 7.5 months old and has Nemaline myopathy (neb-related). He is now in the PICU because in the last 2 weeks, he was struggling with saturation drops while being asleep into the 80s, sometimes lower, and it took some minutes to recov...
by curiousgeorge
Wed Aug 24, 2016 10:41 am
Forum: Spinal Muscular Atrophy (SMA)
Topic: Nighttime Bipap
Replies: 6
Views: 1535

Nighttime Bipap

Any proof that the proactive and therapeutic use of nighttime Bipap is beneficial to type 2 sma kids? Any proof that the use of nighttime Bipap is effective in reversing and correcting Pectus Excavatum and promote healthy chest wall growth? Any chance, the use of nighttime use bipap would cause earl...
by curiousgeorge
Thu Jul 28, 2016 3:49 pm
Forum: Nemaline Myopathy
Topic: 2 1/2 year old, swallowing issues, daily suctioning
Replies: 1
Views: 847

2 1/2 year old, swallowing issues, daily suctioning

Asked by a parent: Hi Dr Bach! I was hoping to chat with you again about my son's bipap settings and his need for cough assist. We have had no luck getting approval for a cough assist yet (son is 2.5 years old, swallowing issues and needs to be suctioned orally) So i was hoping to get some resources...
by curiousgeorge
Mon Jun 06, 2016 7:57 pm
Forum: Duchenne Muscular Dystrophy (DMD)
Topic: ICU with respiratory problems
Replies: 1
Views: 768

ICU with respiratory problems

I'm writing to you on behalf of my son with DMD. He is currently in ICU for respiratory problems. While here, he lost what little ability to eat that he had. We are now faced with the decision between a nasal feeding tube & a belly feeding tube. They will have to use general anesthesia if we opt...
by curiousgeorge
Mon Jun 06, 2016 7:52 pm
Forum: General Discussion About Noninvasive Ventilatory Support (NVS)
Topic: Tonsil stones
Replies: 1
Views: 860

Tonsil stones

I am writing you to ask your advice on removing a tonsil stone [my son] swallowed about three weeks ago. He says it feels the same as it did when he swallowed it. He knows it's a tonsil stone because he felt it come out and then swallowed. He now is 18 so he wanted us to wait to see if it would diss...
by curiousgeorge
Fri May 13, 2016 2:19 pm
Forum: Post-Poliomyelitis
Topic: Traveling with ventilator
Replies: 3
Views: 1279

Traveling with ventilator

MY husband and I are traveling. I will be taking the machine so I am thinking I will do OK. Would send me a note to discontinue the O2? I have not used it for seven months, so I need to stop paying for it and have it gone, but the company will not take it without a note from you. (Asked by a patient)
by curiousgeorge
Thu Mar 24, 2016 12:23 pm
Forum: Spinal Cord Injury
Topic: C2 injury, ICU, 24 hour NIV/NVS
Replies: 2
Views: 1435

C2 injury, ICU, 24 hour NIV/NVS

I have a 64 y/o man, C2 complete in the ICU. If you were to propose 24 hr NIV and decannulate, would you also consider NeuRx/DPS in parallel? I realize that they are a bit redundant but the DPS would address some of the anxiety of removing all “secure” support and the MPV would provide the advantage...
by curiousgeorge
Thu Mar 24, 2016 11:36 am
Forum: General Discussion About Noninvasive Ventilatory Support (NVS)
Topic: [YouTube] How often can I use MIE?
Replies: 5
Views: 2120

Re: [YouTube] How often can I use MIE?

In general, for patients with enterostomy feeds/ oral feeding, do you ask them to -hold the feeds or be NPO* for 30 min before cough assist therapy -hold the feeds for 60 min or be NPO for 60 min before cough assist therapy -do not ask them to hold the enterostomy feeds at all or there is no need to...
by curiousgeorge
Thu Mar 24, 2016 11:30 am
Forum: General Discussion About Noninvasive Ventilatory Support (NVS)
Topic: Feeding and cough assist therapy
Replies: 1
Views: 1064

Feeding and cough assist therapy

In general, for patients with enterostomy feeds/ oral feeding, do you ask them to -hold the feeds or be NPO* for 30 min before cough assist therapy -hold the feeds for 60 min or be NPO for 60 min before cough assist therapy -do not ask them to hold the enterostomy feeds at all or there is no need to...
by curiousgeorge
Wed Mar 23, 2016 2:06 pm
Forum: General Discussion About Noninvasive Ventilatory Support (NVS)
Topic: Doctors sent my baby for polysomnogram!
Replies: 2
Views: 1254

Doctors sent my baby for polysomnogram!

The doctors sent my baby with neuromuscular disease type 1 for a polysomnogram and said that the results indicated that he/she does not need to use biPAP (or any other means of noninvasive ventilatory support). What should I do?

(Asked by a parent)
by curiousgeorge
Wed Mar 23, 2016 2:04 pm
Forum: General Discussion About Noninvasive Ventilatory Support (NVS)
Topic: Scoliosis
Replies: 2
Views: 1233

Scoliosis

My child has scoliosis, how should it be managed?

(Asked by a parent)
by curiousgeorge
Wed Mar 23, 2016 2:03 pm
Forum: General Discussion About Noninvasive Ventilatory Support (NVS)
Topic: [YouTube] How often can I use MIE?
Replies: 5
Views: 2120

Re: [YouTube] How often can I use MIE?

My child cannot cooperate with MIE, what should I do?

(Asked by a parent)
by curiousgeorge
Wed Mar 23, 2016 2:02 pm
Forum: General Discussion About Noninvasive Ventilatory Support (NVS)
Topic: My child cannot cooperate with MIE
Replies: 1
Views: 1038

My child cannot cooperate with MIE

My child cannot cooperate with mechanical insufflation-exsufflation (MIE), what should I do?

(Asked by a parent)
by curiousgeorge
Wed Mar 23, 2016 2:00 pm
Forum: General Discussion About Noninvasive Ventilatory Support (NVS)
Topic: Exercises to strength muscles?
Replies: 2
Views: 1269

Exercises to strength muscles?

Are there exercises my child can do to strengthen his muscles?

(Asked by a parent)

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