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.
So my previous post lacked in some information. My computer was dying which made it hard to type.
Anyways, one thing I wanted to write about was the fact of where the brain malformation is and Sam’s delays.
Being it is the left frontal lobe it explains as to why Sam’s has the struggles he does.
So with a lot of therapy which he already gets, he can learn strategies on how to deal and cope with these issues and thus be able to function.
I haven’t written in here much lately and really haven’t written in my other blogs either. I am not sure why but I do feel kind of bad not keeping up with the kids blogs. I really wanted to have something for them to look back on.
I guess long story short, it has been busy, stressful and rather overwhelming at times.
Overwhelming is how things have been with Sam of late. A lot of wondering, guessing, doctor visits, tests to try and figure out what is happening with him.
Recently, he had an EEG done to see how his seizures were doing, along with a MRI to run out an possible tumors (there was a lot that maybe he was having headaches and maybe that was due to tumors being with his PTEN he is at higher risk for them), and then had an ABR hearing test.
The good news was the hearing test showed things were normal. So that was nice to hear.
The EEG showed no seizure activity which on the surface is a good thing but being he was coming out of sedation that can affect things. So who really knows if there is any or not.
They typically don’t sedate for an EEG but with Sam, that’s pretty much the only way that you are going to get him to sit still.
Now the MRI.
That was a rather conflicting in terms of how things were explained.
Thankfully after a long wait at the genetics doctor, we got some answers in a way and also some direction of where to go from here.
Sam’s left frontal lobe of his brain is malformed and there is scarring from seizures in that area. The doctor showed me on the MRI how it looked and how the right frontal lobe looked. The right part is *normal*. in terms of how it should look for someone Sam’s age. The left does not look like it should. I guess this is consistant with PTEN and it was explained that basically his brain did not form right when he was cooking and then being born early did not help.
She referred us to a new neurologist to see what her thoughts on Sam are along with trying to figure out if his seizures are not under control.
She also believes he has headaches so we are working on that piece.
She has is working on getting him higher up on the list for neuro psych testing.
I asked the genetics doctor about what does this mean long term for Sam. She can’t tell the future but she belief is that he will need some sort of support long term. I asked his OT tonight in plain English what would that entail. She gave me some ideas. I feel better I guess about how OT explained it but it’s still overwhelming and a lot of emotions going on.
In the end thought, you know Sam is Sam , one hell of a lil guy who has kicked butt and took names since birth. He will continue to do so and show the world you can’t stop a Penwarden.
I have neglected this blog along with my others. Time is getting the best of me.
Also Sam’s medical issues
He’s been having some quirky behaviors.
Neurology said autistic behavior.
Speech therapy thought headaches.
Google told me brain tumors.
Genetics said lets do an MRI.
Today we wait for the results of said MRI.
Yesterday was Sam’s GI follow up.
It was a little iffy I guess if we were going to be seen as we were 8 mins late.
That’s a whole other story…
Overall it was a good appointment. Stay on meds as prescribed except for one where that will be bumped up.
See her in 3 months.
She thinks meds will do the trick.
Here’s to hoping.