Wow, well that was a heck of a lot quicker than I expected.
The sleep doctor from Gillette called me at work. Let’s just say I am not pleased with his bedside manner but he’s not one will we see on a regular basis so I am not going to dwell on it.
Long story short, no sleep apnea was found. He was puzzled as to why Sam was struggling with his breathing at the EEG but not at the sleep study. I asked if it was because he was sleeping on his stomach most of the night but the doctor said he changed positioned 20 times. Due to the results of the sleep study though he wasn’t going to worry about it.
Sleep architecture looked good
Sleep scoring leads showed abnormalities but that is consistent with the EEG (which is due to the brain malformation/and genetic condition)
All 4 stages of sleep were shown
He doesn’t retain carbon dioxide
He was asleep 93% of the night
His saturation rates ranged from 92% to 98%
There was synchronized generalized sleep activity
He said that kids with a history of seizures and hypotonia tend to be more sleepy than their peers according to the sleep doctor. He said if we want to pursue anything more than we would need to see him in clinic but he feels that this one night was representative of Sam’s sleep habits despite what I said about how he sleeps and how this doctor saw him sleep on the video EEG. I guess Harvard published some article that proved one night of a sleep study is sufficient.
I feel like a bad mom for having him go through that. I hate seeing him go through tests that come up with nothing.
I guess we do know something. He has no sleep apnea.
But not so much Sam related.
A fellow preemie mom blogger has written a book about her journey. I don’t formally know her but I have interacted with her on the internet and she along with some other preemie mommas helped me with navigate the world of having a 26 weeker.
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State of Me | Raising the Brothers Phttps://raisingthebrothersp.wordpress.com/2015/06/09/state-of-me-2/
Just found out I’m part of Kayla Aimee’s Launch Team for hew new book available July 1, 2015! I’m excited to start sharing how to find #AnchoredHope in the midst of unexpected circumstances!
A fellow preemie mom wrote this book
Yesterday, Sam and I checked in for his video EEG. It was rough during the part where they put the leads on. After that is was pretty easy.
Sam was asleep from 12:30 to 6.30.
I had time to get a feel for Gillette’s. I am in awe of this hospital. Wonderful staff and medical care.
He seems in good spirits today
Today was day 2 of testing, evaluations, and interviews for Sam’s autism testing.
To make a long story short, Sam’s medical dx is:
Autism Spectrum Disorder with accompanying global development delay, rule out intellectual disability. With accompanying receptive- language disorder. Associated with PTEN hamartoma syndrome and prematurity.
Recommendations are: ABA therapy , continue private therapies and if spread to thin and Sam’s stamina becomes an issue the drop speech therapy and preschool.
Needless to say, still absorbing the information and starting to research ABA therapy. I need to re read the information they sent home with me.
In the end like I have posted before, no matter what docs says, Sam is still Sam. He’s the kiddo who loves when you play crack the eggs, sign head and shoulders, not care for zills but loves Indian music, has no problem trying to swipe your food , lives for someone to blow bubbles, walks around like he owns Fairview Rehab in Burnsville, and marches to the beat of his own drummer like any cute 2 year old would.
Tomorrow we are off to Regions for his 48 hour EEG
Run down of Sam’s appointment with this new neurologist ;
So I think it was good we went to see this neurologist at Gillette’s. She was much more into talking and going over EVeRYTHING about Sam. Heck, she even explained to me that Sam does not just have abnormal white matter. It’s both grey and white matter that is abnormal in his brain. I am blanking on the name she used. Nice to have a doctor that talks, listens and explains.
I was blown away when she asked what I felt the goals of the appointment were.
Plan and thoughts…
She doesn’t think Sam is in pain from headaches because he doesn’t cry but after talking she seems to think maybe there is some sort of pain.
She thinks his tiredness is possibly due to sleep apnea so she is going to get us an appointment for a sleep specialist and maybe even a sleep study.
She is going to schedule a 24 to 4& hour video EEG at the hospital .
She also wants him to see a rehab doctor ( I forgot the actual name she used being we went over so much).
Seriously was not expecting such a productive appointment
well, the day I have been waiting for yet dreading is here.
The U of M called to schedule Sam’s eval testing.
May 15th and 18th
I don’t know how to feel.
Yesterday rather then having early intervention come to our place for his weekly services, we went to school so they could do the ADOS evaluation as part of his preschool evaluation.
This is what the ADOS is: http://wpspublish.com/store/p/2647/autism-diagnostic-observation-schedule-ados
It went o.k. for the most part. In the beginning Sam was not really in the mood. He doesn’t like unfamiliar places let along a door being closed.
He eventually warmed up though and they were able to do it.
A bit later the school psychologist called me to discuss the *findings* I guess you would say. I don’t have the formal report or anything as they are working on that for his big meeting on May 11th to finalize his preschool plan.
Long story short as we all pretty much expected, he has many characteristics of being on the spectrum. She went through explaining what they say from Sam and what they would have liked to see. There was a lot of positives and then some negatives as well.
What does it mean? Truthfully I am not to sure as I didn’t really ask a lot of questions. I figured I would reserve those to his meeting in May and when we eventually are seen in the Autism clinic at the U of M whenever they get us in.
Thankfully, the school said when it is written up it will be a way to show yes that he does have these characteristics but also this, that and the other thing medically to show Sam has a whole rather then just a label tossed on him.
And side note, he has an appointment with the new neurologist at Gillette’s on April 29th. Here’s to hoping she can help shed more light on what’s happening with Sam.