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Respiratory Disorders (Expert Forum)
Follow up to: Tracheomalacia in 9 yo
Answered by
This forum is for questions and support regarding lung and respiratory issues such as: Allergies, Asthma, Bronchitis, Colds - Flu, Chronic Cough, COPD, Cystic Fibrosis, Emphysema, Fibrosis, Lung Abscess, Nasal Polyps, Pleurisy, Pneumonia, Sarcoidosis, Sinusitis, Tuberculosis.
Follow up to: Tracheomalacia in 9 yo
by kass, Feb 14, 2003 12:00AM
Thx for response to previous question. Bronchoscopy was performed yesterday w/ mild sedation and an ability for him to perform as asked, and a breathing treatment just preceding the test. The following was seen: mild tracheomalacia; moderate bronchomalacia; a "bulge" on one side just above the epiglottis; and where the trachea split to go to each lung, while on the right it looked normal, the left side was much smaller and constricted. No obvious inflammation seen but lavage was done and those results will be in next week. Chest xray done last week was normal.
Initial thoughts of pulmo were that the constriction he saw was not enough to cause the severity of abnormal PFT's and that he feels there is an issue with "effort", in that because of the hypotonia he's unable to exhale more forcefully thats playing a part. We're to discuss things further next week.
Questions:
1. Is a sleep study warranted at this time?
2. Any thoughts on cause of the "bulge" and constriction seen?
3. Thoughts on why a 9 year old would suddenly develop any of this?
4. Any ideas of what to expect in the near future (prognosis if you will) and/or possible treatments needed?
5. Any risks of allowing him to actively play for as long as he can?
Any thoughts on where we go from here greatly appreciated. This is an active child who's been reduced to being unable to actively play for more than 5 minutes without significant pain and feeling bad for hours afterwards. As his parents, we're desperate for any possible treatment that might help, as well as being desperate to understand better whats happening.
Initial thoughts of pulmo were that the constriction he saw was not enough to cause the severity of abnormal PFT's and that he feels there is an issue with "effort", in that because of the hypotonia he's unable to exhale more forcefully thats playing a part. We're to discuss things further next week.
Questions:
1. Is a sleep study warranted at this time?
2. Any thoughts on cause of the "bulge" and constriction seen?
3. Thoughts on why a 9 year old would suddenly develop any of this?
4. Any ideas of what to expect in the near future (prognosis if you will) and/or possible treatments needed?
5. Any risks of allowing him to actively play for as long as he can?
Any thoughts on where we go from here greatly appreciated. This is an active child who's been reduced to being unable to actively play for more than 5 minutes without significant pain and feeling bad for hours afterwards. As his parents, we're desperate for any possible treatment that might help, as well as being desperate to understand better whats happening.
Doctor's Answer
by National Jewish, Feb 19, 2003 12:00AM
, Feb 19, 2003 12:00AM
It is unlikely that your son’s problem has developed suddenly. The most likely cause of all of this is the progression of the mitochondrial encephalopathy that has occurred since being diagnosed in February 2001 at Cleveland Clinic.
The results of pulmonary function tests (PFTs) depend upon the effort of the person being tested. Your son’s mild low muscle tone, also called hypotonia, could limit his effort when he is trying to exhale forcefully. His abnormal PFTs would be expected with your son’s hypotonia. A sleep study would help to show if your son is having other breathing problems during sleep.
Without exercise your son’s muscles could get out of shape, becoming deconditioned and weaker. This could certainly complicate your son’s situation. Allowing him to play as hard as he wishes for as long as he can without serious fatigue should help to lessen deconditioning.
To have your questions answered by the neurologists at the Cleveland Clinic, please submit it to the Neurology Forum at http://www.MedHelp.org.
The results of pulmonary function tests (PFTs) depend upon the effort of the person being tested. Your son’s mild low muscle tone, also called hypotonia, could limit his effort when he is trying to exhale forcefully. His abnormal PFTs would be expected with your son’s hypotonia. A sleep study would help to show if your son is having other breathing problems during sleep.
Without exercise your son’s muscles could get out of shape, becoming deconditioned and weaker. This could certainly complicate your son’s situation. Allowing him to play as hard as he wishes for as long as he can without serious fatigue should help to lessen deconditioning.
To have your questions answered by the neurologists at the Cleveland Clinic, please submit it to the Neurology Forum at http://www.MedHelp.org.
Have you considered having a very good ENT (Ear, nose & throat) doc join your son's medical team, to investigate the bulge near his epiglottis? ENT's would most likely know more about this area than Pulmonologists (lung docs).
Also, consider the possibility that GERD may be one of several factors, becaue GERD is very common, including the LPR type (laryngeal-pharyngeal reflux).
I wish the best for your son.
Sincerely, Concerned lady
http://cantbreathesuspectvcd.com (look at page 3 of my website, for more food for thought)