Ethan had a series of regular follow up appointments at Children's yesterday (8/6/12).
We got the results from his sleep study and the results
were shockingly good! I almost asked if they had accidentally switched the
results with another child - they were so unexpectedly good. Normally, Ethan's
results from sleep studies are not that good - but the doctors always throw in
the caveat - but for *him* this is normal, so they generally are not very
concerned. Today - his results were actually *really* normal. Not just "normal
for him". "Normal" is about 4-5 apnea episodes per hour for children. Ethan
had approximately 1 per hour.
He was scheduled for a(nother) hearing screen
but his ENT examined him first and found he had fluid in his ears - a left over
from the cold he just got over last week - so she scrubbed the hearing screen
and will reschedule it for 3 months from now.
He was also tested at
Children's by a speech pathologist. She was also amazed at his progress since
she last tested him (back in about January). He is not quite ready to be
discharged from speech therapy as he still has trouble with the k sounds and
hard g sounds but she did remark on just how much more she understood of what he said and how far he as progressed.
His main craniofacial pediatrician saw him and also was so pleased with his progress. He examined his spine and saw no indications that there might be problems (craniofacial microsomia can also affect the spine however any diagnosis of any problems can't be made until the child is older and bones calcify more). He will have his spine X-rayed the next time we are in to get a definitive look. We are still tracking for jaw surgery
possibly at age 7-8 and early jaw surgery is now off the table again. So it was
a very good day at Children's. (As an aside, we were also informed that Ethan is getting to the age where we will start to see the dentists/oral surgeons at Children's as we begin charting the course towards his eventual jaw surgery - we might start seeing them at our next appointments in early 2013).
From the 'other news' department desk:
Ethan is registered for preschool this coming September. He will be attending the same school as Jonathan but in his age group, he will only be going 2 days a week for 2.5 hours/day. Ethan will be starting school one year earlier than Jonathan. We hemmed and hawed on this idea for quite a while - but he seemed so ready for school that we felt we didn't want to hold him back. We actually asked Ethan if he wanted to go to school like his big brother and he seemed to be very enthusiastic about it and was very happy when we told him that he was indeed going to be going to school later in the year.
In other sports news...
Jonathan passed Basic Level 1 in ice
skating. So if he wants to continue (and he said he does), it's on to the next
level.
I also saw Jonathan's swimming class. This has been the first
time in about a month or two that I've seen his swim class. He's made a *lot*
of progress since I last saw him. He's putting his face/head in the water and
he's starting to learn the basic front crawl.
Also - Jonathan earned
his 2nd black stripe on his white belt in Karate class just this last Saturday.
- bob
Showing posts with label sleep apnea. Show all posts
Showing posts with label sleep apnea. Show all posts
Tuesday, August 7, 2012
Tuesday, January 24, 2012
Mixed Results With A Bias To The Upside
Ethan had a plethora of regularly scheduled followups at Children's yesterday. The bottom line coming out of all the appointments is that Ethan is doing well; nothing to see here - move along, move along!
He was evaluated by a speech pathologist/therapist and the recommendation was that Ethan continue with speech therapy. He has made tremendous progress since he began, but there is still work to be done (he still does a lot of consonant substitution) and he is probably not ready yet to be discharged from his therapists' services.
Ethan also met with his plastic surgeon. His post-surgical scars are coming along very nicely. It was felt that he is on track for his next major surgery (the jaw distraction) at about age 8 (but see note below). There is the outside possibility that he may not have it until age 18, but that seems pretty improbable. Basically, the road map is as follows: if, as he grows, the mandibular hypoplasia is really not that bad at all when he reaches age 8, then they will postpone any further surgical intervention until age 18 when the jaw is almost fully grown and they can at that time not only do the jaw distraction, but all the orthodontic work that may need to be done to correct any jaw/teeth misalignment. If he needs the surgery at age 8, there will be a followup surgery to do the final corrections at age 18. Between ages 8-ish and 18, they prefer to do nothing if it at all possible. So age 8-ish is crucial as it is really a fork in the road. So while it is possible that he may not need the surgery at age 8, it seems unlikely as his mandibular hypoplasia would have to be quite minimal. But there is always hope... He will have a followup with his plastic surgeon in about one year.
We also went over the results of his sleep study. While the results are hugely improved over the results of his pre-op sleep study, on their own, they are not great results. Before his tonsillectomy and adenoidectomy, he had up to 24 sleep apnea occurrences per hour peaking with up to 48 per hour during REM sleep. Post surgery, this fell down to about 6-8 per hour. This is a vast improvement. However, 'normal' is considered to be about 1.5 per hour. The general consensus was to just watch him and to have a followup sleep study in 6 months. If the results are very poor (as in much worse than current), then early jaw surgery will be reconsidered. However, if the results are better or the same (or even marginally worse) the course of action could be varied: resume oxygen at night, CPAP, or possibly nothing at all. So again, we shall see...
Ethan also had a followup hearing test. This was actually his best test to date as he actually seemed interested and engaged and gave good results (as opposed to in the past where he seemed to get bored and then simply ignored the test after giving initially good responses). The results seemed to indicate he possibly does have some hearing loss in his right ear but over all, his hearing loss is not enough to be of any developmental hindrance. There will be yet another followup test in about 6 months or so when he will be about 3 years old and he will be old enough that they can administer a different type of hearing screen.
So overall the results were mixed. He is doing much better, but the results were not stellar. His sleep quality is still not considered 'normal' but it much, much improved. His speech is likewise greatly improved, but there is still work yet to be done. The common theme running through all the appointments today was, "see you in six months!".
- bob
He was evaluated by a speech pathologist/therapist and the recommendation was that Ethan continue with speech therapy. He has made tremendous progress since he began, but there is still work to be done (he still does a lot of consonant substitution) and he is probably not ready yet to be discharged from his therapists' services.
Ethan also met with his plastic surgeon. His post-surgical scars are coming along very nicely. It was felt that he is on track for his next major surgery (the jaw distraction) at about age 8 (but see note below). There is the outside possibility that he may not have it until age 18, but that seems pretty improbable. Basically, the road map is as follows: if, as he grows, the mandibular hypoplasia is really not that bad at all when he reaches age 8, then they will postpone any further surgical intervention until age 18 when the jaw is almost fully grown and they can at that time not only do the jaw distraction, but all the orthodontic work that may need to be done to correct any jaw/teeth misalignment. If he needs the surgery at age 8, there will be a followup surgery to do the final corrections at age 18. Between ages 8-ish and 18, they prefer to do nothing if it at all possible. So age 8-ish is crucial as it is really a fork in the road. So while it is possible that he may not need the surgery at age 8, it seems unlikely as his mandibular hypoplasia would have to be quite minimal. But there is always hope... He will have a followup with his plastic surgeon in about one year.
We also went over the results of his sleep study. While the results are hugely improved over the results of his pre-op sleep study, on their own, they are not great results. Before his tonsillectomy and adenoidectomy, he had up to 24 sleep apnea occurrences per hour peaking with up to 48 per hour during REM sleep. Post surgery, this fell down to about 6-8 per hour. This is a vast improvement. However, 'normal' is considered to be about 1.5 per hour. The general consensus was to just watch him and to have a followup sleep study in 6 months. If the results are very poor (as in much worse than current), then early jaw surgery will be reconsidered. However, if the results are better or the same (or even marginally worse) the course of action could be varied: resume oxygen at night, CPAP, or possibly nothing at all. So again, we shall see...
Ethan also had a followup hearing test. This was actually his best test to date as he actually seemed interested and engaged and gave good results (as opposed to in the past where he seemed to get bored and then simply ignored the test after giving initially good responses). The results seemed to indicate he possibly does have some hearing loss in his right ear but over all, his hearing loss is not enough to be of any developmental hindrance. There will be yet another followup test in about 6 months or so when he will be about 3 years old and he will be old enough that they can administer a different type of hearing screen.
So overall the results were mixed. He is doing much better, but the results were not stellar. His sleep quality is still not considered 'normal' but it much, much improved. His speech is likewise greatly improved, but there is still work yet to be done. The common theme running through all the appointments today was, "see you in six months!".
- bob
Tuesday, June 7, 2011
Trouble Sleeping
Ethan's snoring has become demonstrably worse in the last few months so we called it in. After a cursory examination by his pediatrician and then by Craniofacial at Children's, it was decided to do another sleep study.
The results were quite bad. His oxygen saturation levels were down significantly since his last sleep study (down to about 86% at one point) and he had a significant jump in the number of apnea events - especially during REM sleep which is when the number should go down.
Ethan will be seeing a number of his doctors in a couple of weeks for his regular 6 month followups. One of them will be ENT which will probably take a good look into his airway to see just what is going on.
However, his sleep study doctor did not want to wait even a few weeks without doing anything so Ethan is now on oxygen when he goes to bed. This basically involves putting a tube around his face that supplies oxygen through the nose. This tube is connected to a small oxygen tank (that is refilled every 24/48 hours by a very large unit that looks a little like a Dalek (a Dr. Who reference for the uninitiated)). We tape the hose to his face and run it down under his clothes to minimize any kind of accidental strangulation risk.
The oxygen will continue at least until he has his appointments. Longer term actions will be determined by what the doctors find at his upcoming appointments. Most likely a tonsillectomy will be involved.
Adequate deep sleep is crucial in that the body generates/releases growth hormones during sleep in children.
- b
The results were quite bad. His oxygen saturation levels were down significantly since his last sleep study (down to about 86% at one point) and he had a significant jump in the number of apnea events - especially during REM sleep which is when the number should go down.
Ethan will be seeing a number of his doctors in a couple of weeks for his regular 6 month followups. One of them will be ENT which will probably take a good look into his airway to see just what is going on.
However, his sleep study doctor did not want to wait even a few weeks without doing anything so Ethan is now on oxygen when he goes to bed. This basically involves putting a tube around his face that supplies oxygen through the nose. This tube is connected to a small oxygen tank (that is refilled every 24/48 hours by a very large unit that looks a little like a Dalek (a Dr. Who reference for the uninitiated)). We tape the hose to his face and run it down under his clothes to minimize any kind of accidental strangulation risk.
The oxygen will continue at least until he has his appointments. Longer term actions will be determined by what the doctors find at his upcoming appointments. Most likely a tonsillectomy will be involved.
Adequate deep sleep is crucial in that the body generates/releases growth hormones during sleep in children.
- b
Thursday, November 4, 2010
Sleep Study Results
Ethan's primary pediatrician at Children's once remarked that Ethan is "full of surprises". Case in point: the sleep study. Given that Ethan has mandibular hypoplasia (shortened jaw) and therefore a crowded/tight airway, coupled with his laryngomalacia (basically soft floppy tissue in the larynx), he fully expected to see something in the sleep study results indicating sleep apnea or something similar.
True to form, Ethan pulled a fast one on everyone: his sleep study was perfectly fine! There was nothing abnormal in the readings at all! This actually surprised the doctor quite a bit. In his experience, children that are sent from Craniofacial to have a sleep study almost always have sleep apnea. The fact that Ethan has no signs of it is extremely encouraging.
He believes that Ethan's noisy breathing is most likely due to the laryngomalacia almost exclusively. We have talked to his otolaryngologist about this before and her opinion was that it was not enough of an issue to do anything about. Should it become a larger issue, she said it was basically an in-clinic procedure to simply laser the excess tissue away.
The doctor did note that since he has all these anatomical issues, he will be more prone to developing sleep apnea in the future. On the other hand, since he will continue to grow, it is also possible that as he gets bigger, his airway issues will also improve. So the overall odds of him developing sleep apnea are pretty much 50/50. This is just something we will need to watch for over time (increased snoring, less restful sleep, etc).
The doctor said he would talk with his primary Craniofacial pediatrician about the results. Since the news was entirely good, we expect that today was Ethan's last Children's appointment until the summer of 2011 (at which point he will have a regular Craniofacial followup and a regular eye exam by ophthalmology). At very most, we may have a follow up with his Craniofacial pediatrician but I doubt it since there are no issues to be discussed.
- bob
True to form, Ethan pulled a fast one on everyone: his sleep study was perfectly fine! There was nothing abnormal in the readings at all! This actually surprised the doctor quite a bit. In his experience, children that are sent from Craniofacial to have a sleep study almost always have sleep apnea. The fact that Ethan has no signs of it is extremely encouraging.
He believes that Ethan's noisy breathing is most likely due to the laryngomalacia almost exclusively. We have talked to his otolaryngologist about this before and her opinion was that it was not enough of an issue to do anything about. Should it become a larger issue, she said it was basically an in-clinic procedure to simply laser the excess tissue away.
The doctor did note that since he has all these anatomical issues, he will be more prone to developing sleep apnea in the future. On the other hand, since he will continue to grow, it is also possible that as he gets bigger, his airway issues will also improve. So the overall odds of him developing sleep apnea are pretty much 50/50. This is just something we will need to watch for over time (increased snoring, less restful sleep, etc).
The doctor said he would talk with his primary Craniofacial pediatrician about the results. Since the news was entirely good, we expect that today was Ethan's last Children's appointment until the summer of 2011 (at which point he will have a regular Craniofacial followup and a regular eye exam by ophthalmology). At very most, we may have a follow up with his Craniofacial pediatrician but I doubt it since there are no issues to be discussed.
- bob
Subscribe to:
Posts (Atom)