Tomorrow evening Parker and I will check in to the luxurious "sleep center" at Texas Childrens Hospital where we will spend the night in hopes of having a successful study done on his sleep. Yes, the sleep center is the actual hospital. I have found that while there is a plethora of sleep centers for children 6+ and adults, no other facility can accomodate babies. Also interesting to note is that there is an 8 month waiting list for these studies at TCH! WHOA! I was blessed and I have a precious friend that helped us hit the top of the wait list, so here we are ready to go.
Why a sleep study? This was not even on my radar screen until a month or so ago. I'm part of a group of "warrior Moms" that are up to date on the leading research and helping drive cognitive research. These Moms are some experienced ladies, they know the science inside and out and they have older kids so they have experience and answers that I have found diffcult to find in this journey. So, these ladies found that perhaps sleep is even more important that we give it credit. During sleep the GABA receptors change whether the child is sleep deprived or well rested. What I also learned is that even though I think Parker has NO sleep issues (doesn't wake at night, is quiet as a mouse sleeping, has terrific consistent sleep patterns, isn't lethargic during day time) many parents think their child has no issues, but they really do. See this quote from Cincinnati Childrens,
"They found that in general, parents of children with Down syndrome significantly underestimated the severity of their child's sleep disturbances. Overall, 69 percent of parents reported no sleep problems. Yet, 57 percent of children expressed abnormal sleep patterns. In the children with abnormal sleep study results, only 23 percent correctly predicted a problem. In a previous study, only 32 percent of parents suspected their child had obstructive sleep apnea, despite a 100 percent incidence of abnormal studies.
There is concern that an excessive number of arousals may lead to fragmented sleep and sleep deprivation. Excessive sleep arousals and sleep fragmentation have been linked to symptoms usually associated with sleep deprivation such as daytime sleepiness, lack of energy and lack of initiative.
Increased arousals have been associated with decreased neurocognitive abilities and lower results on IQ testing. It has been suggested that the increased arousal rate seen in children with Down syndrome may affect their daytime function and could exacerbate learning or behavior disorders. In children with Down syndrome, behavior and learning disabilities associated with sleep loss tend to be overlooked and assumed to be associated with the limited intellectual abilities associated with Down syndrome."
Out of a group of Moms I talked to that had the initial sleep studies done at 2-3yrs, 5 of the 6 kids had issues when none thought they did. When I questioned Parker's Drs, the response was, ENT, " yes, National DS Society recommeds sleep study annually at age of 1 and older." Hmm, then why am I telling YOU I am doing a sleep study? Pediatrician.. "I'm not concerned, but I'm happy to order one." ENT said most families do it once and never go back since it is such a nightmare and then of course there is that little thing of the 8 month wait list! Seriously? What if I really thought Parker had a serious problem? How do YOU feel if you don't sleep well for a few days? IQ goes down a lot, right? I'm not excited about the hospital stay myself, but chock this up to a preventative visit and a pretty darn important one in my book. What we also learned was that giving ginko in several doses during the day rather than one dose effects REM sleep. This is BIG. Go goggle pubmed if you don't know what I'm talking about. Ginko has a half life and what we learned was that the kids are inhibited again without the continued dose during the day.
Parker's Urologist appointment was this week too, let's just say we have to visit TCH again in the near future. Again, until we saw the holistic MD no mention of issues. What we learned is that with "100% certainty" Parker needs to have orchiopexy to help descend his testicles. There, too much information, sorry! What amazes me is most kids have this repair done before 2 years. More a concern about forming memories of this procedure than the other concerns some might have about this issue. Both his pedi and his endo knew this was a possibility. Again, when asked pedi.."I'm not concerned.." Endo, "if not dropped by June, you will need a specialist." So, being the type-A person I am, decided I will see specialist now...asked him if he thought it would change by June, "I can tell you with 100% certainty it will not." Well, at least he's confident, right? He did say it is minor procedure, day surgery, so unless cardio is concerned we should be in and out quickly. He said no rush, but better to do it sooner so we don't form memories of procedure. So, guess we will add that to our calendar too in the next few months.
I'm not crying in my wheaties, just posting this so others can be sure they are vigilent. These are not big things in the grand scheme of things, new for us, but we are taking them in stride. This little one sure makes us grateful and thankful!!
1 month ago