Beyond Achondroplasia

Growing together with Clara

Sleep study and misleading medical report

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Some medical reports can give us misleading results. So, during this path, I have confirmed once more how important is to be alert and have a critical spirit to analyze the information provided to us by doctors. And if someone don´t feel in a position to do that analysis, there is always a way to get a second medical opinion.

Clara had her last sleep study a month ago. After getting the report, I start reading it and my soul became numb.

Report diagnosis:

“Sleep study exam compatible with a moderate to severe sleep apnea hypoapnea syndrome”

I was expecting on a good result since Clara has virtually doens´t have significant desaturations at night ( the same saying her oxygen levels haven´t been dropping below 94% when she is sleeping and usually she keeps a good oxygen level during sleep, between 95 to 98%).

During the night of the exam, I watched her several times and always found her sleeping with a regular breathing rhythm, sleeping on her side. So, what was wrong!?!?

I started reading the report and I found conflicting results. Even so, I needed the medical opinion of Clara´s pneumologist. So after, the doctor was seeing the report and she looked also surprised and confused after my observations and  questions.

First question and the strongest one:

” How could Clara have this diagnosis if her blood oxygen never dropped below 90%?”.

And that was followed by: ” How come she has now such an increase of central apneas when this represent complete stop of breathing movement for more than 10 seconds if there wasn´t a compatible oxygen drop for this observation?!”

And mostly, in the last page, it´s described the respiratory data integrity, that was less that 90%, confirming artifacts and low signal quality.

Then Clara´s pneumologist went to ask another opinion of colleague that works at the hospital where Clara did the sleep study and when she returned, she brought to us an astonishing opinion:

” My colleague says that in S. Marta hospital they haven´t got the appropriate equipment for pediatric sleep studies so the body bands that are placed around the child thorax and abdomen give inadequate results which are translated in the occurrence of central apneas when, after all, they didn´t occured.”

Oh!!!… I was astonished by this.

How can a medical doctor, a specialty assistant, write such a conclusion/diagnosis when, first of all,  isn´t aware of the case and second, when is well-known by the doctors of that hospital that the results of pediatric sleep tests are no being truthful and consistent? Is inadmissible and unprofessional.

If I hadn´t raised this observations and doubts to Clara´s pneumologist and if our doctor didn´t confirm with her colleague from that hospital the results, Clara was about to get started again using the CPAP (that she stop using 11 months ago).

To get a sleep study easily explained, you must check this good resume:

How to interpret your sleep study.

And here is a very interesting manual to read to, although is much more technical.

The AASM manual for the scoring of sleep and associated events

To clarify:

Apnea (from Greek ápnoia, shortness of breath) is the suspension of breathing during a period of time. During sleep there are three types of apnea, presented below , which are characterized as follows:

1-Central Apnea

Total absence of air – oro- nasal flow and ventilation effort , by inhibition of the respiratory center through the nervous system. The central apneas are common in premature and newborn due to the immaturity of their nervous children, responsible for the activation of the respiratory center

2-Obstructive Apnea

Stopping the air – oro- nasal flow for at least 10 secs,  with persistent effort respiratory diaphragm due to complete obstruction of the upper airway, with drop in oxygen level and arousal from sleep. If the obstruction is only partial , this is a case Hipoapneia. Obstructive  apnea is the most common in the pediatric community.

3- Mixed Apnea

Apnea that begins with the central component and soon becomes obstructive, involving both decreased as control respiratory airway obstruction higher. Mixed apneas occur mainly in infants and children with little age due to an abnormal control of breathing

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One Comment

  1. Sei bem como você deve estar se sentindo, ficamos com medo de tudo, cuidado com tudo afinal é nosso maior tesouro, espero em Deus que venceremos todas as batalhas que estão por vir.

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