Re: Re: Too all- Excessive Phlegm problem

[Guest guest]

Darla,

Carsen also gets MUCH worse with feeds. It's due to his position in sitting. If he's reclined his feeds are much more successful. Sitting up he aspirates. We just got him a liquid thickener and are getting ready to start using it. Have they mentioned this for Zipporah?

Krystena R.

From: Darla Klein

To: List Mito

Sent: Thursday, April 15, 2004 12:35 PM

Subject: Re: Too all- Excessive Phlegm problem

Zipporrah and Asenath both are seeing a new Pulmonologist that moved to Des Moines from Iowa City and I really like him. Zipporrah is using the Pulmicort through a nebulizer mask two times a day since a couple days ago when we saw the doc. She really seems to like the mask and med. I think it must make it easier for her to breathe and she knows it so she doesn't fight it. She actually makes a fuss when we take it off! She has been having sat drops into the low 80's and upper 70's quite frequently with irregular breathing patterns in her sleep. I haven't tried using the pulse-ox much during the day as it goes nuts when she moves, but have noticed some drops during nursing or other times. I think there are a combination of reasons why she is having the phlegm build up and the vomiting and we hope to learn more next Tuesday as she is scheduled to have a video swallow study with her OT. She already has seen several problems with her sucking and swallowing so I hope to get an informative study. I worry about oral feeds as she tends to gag so easily and cough and sputter and her gunkiness really increases after feedings. Then half her feedings come back up.

As for the formula, we are definitely trying different things. We are trying the Isomil w/ iron now and had tried the Enfamil w/ iron for one week prior to her major diarrhea episode (Viral in nature we believe.) If this doesn't work then maybe I will try the other formula you mentioned with no milk or soy products. Thank you all for your help! Darla: mommy to: Asenath (4) Mito, brain vasculitis, strokes, migraines, seizures, g-tube, disautonomia issues, hypotonia, heat/exercise intolerance, oxygen use, asthma... Zipporrah, (5 mon.) Mito, strokes, sensory issues, feeding (NG-tube)/breathing issues...

and the gang...Please contact mito-owner with any problems or questions.

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[Guest guest]

I worry about oral feeds as she tends to gag so easily and cough and sputter and her gunkiness really increases after feedings.

Darla, FYI- this is a huge sx of aspiration. Chelsea had a mild, but chronic gurgle in her throat that was noticed from early infancy. It was not suspected to be aspiration at that time because she was healthy. Her swallow study showed severe silent aspiration. After she started taking phenobarb, I saw the gagging and coughing constantly, where it was minimal before. She would also sound like she was drowning in her own secretions by the end of the meal. It was so hard to take oral feeds away from her, but the difference it has made in her life and health was well worth it.

e, Chelsea's mom(nonspecific mito)

[Guest guest]

Hi Darla

My son had the same problems as a baby and a child. He is on pulmicort too. Although he does not like to sit still for his treatments, so I have to wait until he is asleep. We had him on Alimentum, when he was a baby and tot. It is a medium chain formula. We had countless swallowing studies done. Only when we had someone experienced did we get some answers. They started out with different types of texured foods and liquids. Then waited 15 minutes and started again, thats when the results showed that his food was pooling right at the point of aspiration, except that he swallowed in time. She said that it takes so many muscles to eat, that mito kids get fatigued muscles from just eating. So small frequent meals was the way we went. And now 14 years later he wants to eat all the time and still chokes and aspirates a little. I think this is why he has such a hard time with any type of respiratory viruses. Its been a long 14 years, but worth every minute!

Best of Luck

mom to Colby,13,COXIV,LCHAD,ACC,ADHD ,hypothroidism and osteopenia. Chad, 16, healthy, Caleb, 10, also healthy> >Reply-To: Mito >To: "List Mito" <Mito > >Subject: Re: Too all- Excessive Phlegm problem >Date: Thu, 15 Apr 2004 14:35:42 -0500 > > Zipporrah and Asenath both are seeing a new Pulmonologist that moved to Des Moines from Iowa City and I really like him. Zipporrah is using the Pulmicort through a nebulizer mask two times a day since a couple days ago when we saw the doc. She really seems to like the mask and med. I think it must make it easier for her to breathe and she knows it so she doesn't fight it. She actually makes a fuss when we take it off! She has been having sat drops into the low 80's and upper 70's quite frequently with irregular breathing patterns in her sleep. I haven't tried using the pulse-ox much during the day as it goes nuts when she moves, but have noticed some drops during nursing or other times. I think there are a combination of reasons why she is having the phlegm build up and the vomiting and we hope to learn more next Tuesday as she is scheduled to have a video swallow study with her OT. She already has seen several problems with her sucking and swallowing so I hope to get an informative study. I worry about oral feeds as she tends to gag so easily and cough and sputter and her gunkiness really increases after feedings. Then half her feedings come back up. > As for the formula, we are definitely trying different things. We are trying the Isomil w/ iron now and had tried the Enfamil w/ iron for one week prior to her major diarrhea episode (Viral in nature we believe.) If this doesn't work then maybe I will try the other formula you mentioned with no milk or soy products. Thank you all for your help! > >Darla: mommy to: >Asenath (4) Mito, brain vasculitis, strokes, migraines, seizures, g-tube, disautonomia issues, hypotonia, heat/exercise intolerance, oxygen use, asthma... >Zipporrah, (5 mon.) Mito, strokes, sensory issues, feeding (NG-tube)/breathing issues... >and the gang...Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com Lose those love handles! MSN Fitness shows you two moves to slim your waist.

[Guest guest]

Hi Darla

My son had the same problems as a baby and a child. He is on pulmicort too. Although he does not like to sit still for his treatments, so I have to wait until he is asleep. We had him on Alimentum, when he was a baby and tot. It is a medium chain formula. We had countless swallowing studies done. Only when we had someone experienced did we get some answers. They started out with different types of texured foods and liquids. Then waited 15 minutes and started again, thats when the results showed that his food was pooling right at the point of aspiration, except that he swallowed in time. She said that it takes so many muscles to eat, that mito kids get fatigued muscles from just eating. So small frequent meals was the way we went. And now 14 years later he wants to eat all the time and still chokes and aspirates a little. I think this is why he has such a hard time with any type of respiratory viruses. Its been a long 14 years, but worth every minute!

Best of Luck

mom to Colby,13,COXIV,LCHAD,ACC,ADHD ,hypothroidism and osteopenia. Chad, 16, healthy, Caleb, 10, also healthy> >Reply-To: Mito >To: "List Mito" <Mito > >Subject: Re: Too all- Excessive Phlegm problem >Date: Thu, 15 Apr 2004 14:35:42 -0500 > > Zipporrah and Asenath both are seeing a new Pulmonologist that moved to Des Moines from Iowa City and I really like him. Zipporrah is using the Pulmicort through a nebulizer mask two times a day since a couple days ago when we saw the doc. She really seems to like the mask and med. I think it must make it easier for her to breathe and she knows it so she doesn't fight it. She actually makes a fuss when we take it off! She has been having sat drops into the low 80's and upper 70's quite frequently with irregular breathing patterns in her sleep. I haven't tried using the pulse-ox much during the day as it goes nuts when she moves, but have noticed some drops during nursing or other times. I think there are a combination of reasons why she is having the phlegm build up and the vomiting and we hope to learn more next Tuesday as she is scheduled to have a video swallow study with her OT. She already has seen several problems with her sucking and swallowing so I hope to get an informative study. I worry about oral feeds as she tends to gag so easily and cough and sputter and her gunkiness really increases after feedings. Then half her feedings come back up. > As for the formula, we are definitely trying different things. We are trying the Isomil w/ iron now and had tried the Enfamil w/ iron for one week prior to her major diarrhea episode (Viral in nature we believe.) If this doesn't work then maybe I will try the other formula you mentioned with no milk or soy products. Thank you all for your help! > >Darla: mommy to: >Asenath (4) Mito, brain vasculitis, strokes, migraines, seizures, g-tube, disautonomia issues, hypotonia, heat/exercise intolerance, oxygen use, asthma... >Zipporrah, (5 mon.) Mito, strokes, sensory issues, feeding (NG-tube)/breathing issues... >and the gang...Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com Lose those love handles! MSN Fitness shows you two moves to slim your waist.

[Guest guest]

Hi Darla

My son had the same problems as a baby and a child. He is on pulmicort too. Although he does not like to sit still for his treatments, so I have to wait until he is asleep. We had him on Alimentum, when he was a baby and tot. It is a medium chain formula. We had countless swallowing studies done. Only when we had someone experienced did we get some answers. They started out with different types of texured foods and liquids. Then waited 15 minutes and started again, thats when the results showed that his food was pooling right at the point of aspiration, except that he swallowed in time. She said that it takes so many muscles to eat, that mito kids get fatigued muscles from just eating. So small frequent meals was the way we went. And now 14 years later he wants to eat all the time and still chokes and aspirates a little. I think this is why he has such a hard time with any type of respiratory viruses. Its been a long 14 years, but worth every minute!

Best of Luck

mom to Colby,13,COXIV,LCHAD,ACC,ADHD ,hypothroidism and osteopenia. Chad, 16, healthy, Caleb, 10, also healthy> >Reply-To: Mito >To: "List Mito" <Mito > >Subject: Re: Too all- Excessive Phlegm problem >Date: Thu, 15 Apr 2004 14:35:42 -0500 > > Zipporrah and Asenath both are seeing a new Pulmonologist that moved to Des Moines from Iowa City and I really like him. Zipporrah is using the Pulmicort through a nebulizer mask two times a day since a couple days ago when we saw the doc. She really seems to like the mask and med. I think it must make it easier for her to breathe and she knows it so she doesn't fight it. She actually makes a fuss when we take it off! She has been having sat drops into the low 80's and upper 70's quite frequently with irregular breathing patterns in her sleep. I haven't tried using the pulse-ox much during the day as it goes nuts when she moves, but have noticed some drops during nursing or other times. I think there are a combination of reasons why she is having the phlegm build up and the vomiting and we hope to learn more next Tuesday as she is scheduled to have a video swallow study with her OT. She already has seen several problems with her sucking and swallowing so I hope to get an informative study. I worry about oral feeds as she tends to gag so easily and cough and sputter and her gunkiness really increases after feedings. Then half her feedings come back up. > As for the formula, we are definitely trying different things. We are trying the Isomil w/ iron now and had tried the Enfamil w/ iron for one week prior to her major diarrhea episode (Viral in nature we believe.) If this doesn't work then maybe I will try the other formula you mentioned with no milk or soy products. Thank you all for your help! > >Darla: mommy to: >Asenath (4) Mito, brain vasculitis, strokes, migraines, seizures, g-tube, disautonomia issues, hypotonia, heat/exercise intolerance, oxygen use, asthma... >Zipporrah, (5 mon.) Mito, strokes, sensory issues, feeding (NG-tube)/breathing issues... >and the gang...Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com Lose those love handles! MSN Fitness shows you two moves to slim your waist.