Sleep Study Findings. No seizure activity (woo hoo!) She was, however, having quite a bit of sleep apnea and acid reflux. Her O2 saturations would drop intermittently. The doctor explained that sleep apnea is either peripheral (lung issues, high lipidity, etc) or central (brain function), and Chloe's apnea is central. In other words, her brain actually stops working and stops sending the signal to get Oxygen where it needs to go. However, when the brain stops getting oxygen, it wakes itself up (which wakes Chloe up), and starts working again. How awful! No wonder she's waking up all the time. Their conclusion that she was having acid reflux was just from watching her body throughout the sleep study.... constantly arching, etc.
Brain MRI. Anything but normal, but no changes from the several MRI's we've done in the past.
Spinal MRI. Normal. Woo hoo! Normal = my favorite word when it comes to medical testing. I believed there were going to be cysts on her spine, just because of some symptoms, but I was wrong and this is one of those occasions when I am very happy to be wrong. =)
EMG. Normal. {Raisin' the Roof!} The results of this test rules out a lot of very serious muscular disorders. Hallelujah.
Spinal Tap. Normal. This rules out several neurotransmitter disorders.
Mitochondrial Tests. Overall normal. The Prolactin was slightly elevated, but the spinal tap ruled out any issues the Prolactin test may indicate.
Allergy Tests. Still waiting on the results.
Battle Plan. To reverse the sleep apnea issues, the first thing we're going to try is tonsilectomy (including the adenoids). The doctor believes if there is more room in her throat, it will make the oxygen flow occur more easily. I am probably explaining this wrong, but this is how it makes sense to me, so.... this is what we get! I'm in the process of scheduling a consult with an ENT. To deal with the reflux, we're upping her Prevacid (2 tablets a day instead of 1). If she's still having issues after a few weeks, we're going to do a pH probe, to analyze the acid level in her stomach over a 24-hour period, and then go from there. The doctor also gave me a referral for a nutritionist. I'd like to look more into the Kytogenic diet, as well as possible supplements, like Omega3, amino acids, and any others that I don't know of. The doctor noted Chloe's improved reflexes, her decreased spasticity (especially in her hands), increased cognitive abilities and social engagement, and increased neck strength/head control. This, of course, got me going on my ABM tangent. Since this doctor has a child in a wheelchair, after suffering several strokes, he was very interested in the ABM. I went on and on, and he seemed to be a believer from what I said and seeing the dramatic improvements in Chloe after she has had only 3 treatments. Needless to say, I think he'll be taking his daughter in for ABM. I really hope he does because not only will it help his daughter, but maybe he'll be able to refer lots of his patients to get this type of therapy as well. I just want everyone to know about it!!! What can I say, I'm obsessed.
Oh, I just thought of something else. Chloe does this thing every once in awhile when she is first put in her car seat or wheelchair. Without exaggerating one bit, it is just AWFUL. Her entire body contracts, and she SCREAMS - red/purple face screams. Her fists clench and she always just looks at me, like, 'Mom, PLEASE fix it!' And because I don't know what is causing it, I can't fix it. All the test results ruled out the possibilities of what was causing it. That is good because now we know a lot of things that it isn't, but now we still have to figure out what it IS. The doctor thinks it may be an issue with acid in her stomach, and possibly an issue with her hip joints going out of socket when she is put in that position. So we're working on the acid issue. And now we're also going to get hip xrays to rule out that possibility.
Ya know, though, lately I have been really grateful that Chloe is healthy overall. I mean, I know she has issues with her body, and it is hard. But she can breathe. She doesn't have problems with her heart. She understands and is interactive. I'm grateful. We are so blessed.
So, I think that's it for now.
11 comments:
WOW! Lots of information to process! We see an ENT and a nutritionist at Primary children's as well-- we also did the ph test a while back when we weren't sure how big Caleb's reflux issues were! We'll have to compare notes.
BEST OF LUCK!!
It sounds like a great visit overall. It's nice to get them since the bad visits are just awful! As for the reflux, Emma had it too and they wanted to put her on medicine. I don't like medicine in such a little one if it can be avoided, so we changed her drink (from Pediasure and formula) to a different concoction and reflux is gone. I say, try the nutritionist and if you don't like her, give Kelly Dorfman (www.kellydorfman.com) a call and consult with her over the phone - that's what we did and I credit the new drink for a lot of the recent changes in Emma.
Congrats again!
Glad you got some good results back and ones that you can work on!
lots of good news and some good answers and direction of where to go from here. how wonderful!
Wow! Wonderful news!!! I hope you continue to see progress with ABM and Chloe's surgery goes well with her tonsils. Can't wait for your next update. :)
That's an impressive battery of tests she's troopered through. She is so lucky to have such a great advocate for her best care in you. If there's anything infertility taught us it was to learn all you can and be proactive in your own treatment plans. We were told by multiple doctors that we'd never have kids. I actually came up with the IF protocol that worked for us doing the same kind of things you are.
I'm a strong believer that no one has more of a capacity to figure out these problems than a patient, well educated (even if that means self educated) parent. She will reach her maximum potential in life because YOU will accept nothing less than that for her.
Hi Tara! I found you through Jude's mom, Jennifer. My son Charlie has CP, epilepsy, and hydrocephalus caused by a stroke right after birth.
One thing that's really helped Charlie with his reflux is an herb called Slippery Elm. We put it in his morning oatmeal and it keeps the reflux from burning his throat. Of course, it doesn't actually stop the reflux, but it doesnt' bother him a bit any more.
It's good to hear so many normal test results--I'm sure you were thrilled to hear that.
So much good news! What is a kytogenic diet?
We are so glad that the results came back good. Yeah Chloe! We love you and keep us posted.
SO many tests. It seems like a lot of them are normal. If she could get better rest I'm sure it would help her body overall. I'm glad you have found something that is helping. :)
It sounds like you are getting great information - I'm so glad! I'm happy you seem to have found therapy that works well for Choe - YEAH! Love you girl.
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