Thursday, December 01, 2005

Speed Bumps

We have been moving along so quickly, traveling and growing and changing, that it seemed nothing could stop us. We were on a roll but we were headed for some speed bumps. Peanut had had a sleep study (polysomnogram) done the beginging of the month, which we never heard anything back on. I assumed that that meant everything was fine, until Monday of this week. I got a call from the Down Syndrome Center regarding a message I had left about an entirly different matter. While reviewing the finer things in life, aka Peanuts Poop, the sleep study was brought up. The NP, Nurse practitioner, wanted to know where things stood with the test. I told her we hadn't heard anything so as far as I was concerned. Apparently the pulmonology department, being as short handed as they are, had allowed her study to fall through the cracks with no follow up. She had had 107 obstructive hypopneas (when your oxygen level drop) which is not a good number. However she never retained any Carbon dixoide (called hypoxia). Her O2 levels droped a little, but only for a small percent of her sleep time. At times I think that these studies a a little too much information. That we are looking for things that we might otherwise never know about. In the mean time they sent over a SPO2 monitior (measures the pulse and oxygen levels), as well as a couple of tanks of O2. Just in case.
So while chasing that around they decide she needs to have an adenotonsillectomy (remove her adenoids and tonsils), and see cardiology because there was an irregularity in the heartbeat from the ONE EKG lead (may be a bad lead). I decided to have her x-rayed for the adenoids before seeing ENT so as to expidite the process (ie rule out surgery or rule it in depending on what they see radiologically and clinically). I also decided that if I am going in for x-rays I might as well have them look for atlanto-axial instability (instability of the c1 and c2 vertebrea that is common in 10-25% of children with DS. They have a weakness in the joint that can increase the likelihood of damage to the spinal cord.). I wanted it checked for two reasons, first we usually check arond age two and second apparently during the adenoid surgery the doctors position the head in such a way that if you have the instability it could cause a problem. Just clearing all aspects. I got the call today that she does NOT have the atlanto-axial instability (she has 3 mm and instability is marked by 4-5 mm betwen the vertebrea (we can do horseback riding!(hippo-therapy)), and that her adeniods and tonsils look normal in size. I see ENT tomorrow so will have a better idea tomorrow , but for now I can rest easy...i think. I have the Pulse/Ox monitor on Peanut , so far she is ok, although I think it is not the best lead, as her heartrate keeps dropping. I'll keep an eye on her tonight and see what happens.
We had her six month review for EI today (early intervention). She has come a long way Baby! We were able to cross off a good number of objectives and had to come up with new ones. Hooray!
So that's the news from the homefront, speed bumps in the road, but we are hoping for smooth sailing once again (knock on wood and all that jazz).


Anonymous said...

Elainah had a continous pulse for the first eleven months of her life. Her normal baseline is about 94% and she has had some apnea. We have had two synotic spells both in the first six months.

She has had a multitude of breathing and sleeping issues since birth. She has tracheal-bronchio-laryngo malacia, sub glottic stenosis, and chronic asthma.

I recently had a friend suggest to me that I have a sleep study done on her, because she has NEVER slept more than two hours at a time in her life.

How long was the sleep study? Where was it done? (i.e clinic, hospital)

This post definately puts the fire under my feet to get a sleep study scheduled really soon.

Belovedlife said...

A sleep study occurs at a hospital usually through a pulmonology dept. It involves a one night hospital admission. They hook your child up to lots of monitors to measure all kinds of things. They check REM sleep patterns by brain waves with leads placed all over their heads. THey check for night movements by leads on legs, face and upper torso. They check pulse rate, oxygen levels and breaths. They check sleep positions by watching the kids on video. It is really neat what all they can tell, but be prepared to see your child looking like a robot with all the wires coming off of them.
There are two types of sleep studies a pneumogram and a polysomnogram. The pneumogram is just to check for bradycardia (heart rythm and rate) basic apnea and o2 saturations. It a a basic test with less leads and less info. The Polysomonogram checks REM sleep patterns, night movements and sleep positions. It is a more informative test. If oyu do go for the sleep study it is worth doing the full polysomnogram. We have done both and I wish we had been more insistant on the full, so we only would have had to have done one.
Hope it helps, good luck. It sounds like oyu have things under control, check with your pediatrcain and pulmonologist about the sleep study.
Elainah sounds like Peanut, never sleeping for longer then two hours...crazy!NO wonder Im so tired all the time!

Julana said...

I'm glad Peanut doesn't have AAI. Our son does, but not in its severer form. He was also cleared for riding.

His sleep study also showed apnea. He had his tonsils and adenoids removed and it improved his sleeping and eating considerably. It should have been done sooner.