This might come across as a really negative post. I hope that those reading it will understand it is not meant to be so. Remember, this is my journal, so my statements reflect most of my thought process and therefore, the bad/sad/upset is included.
Aidan's scope:
As I look back at all the years of severe vomiting and ER visits and hospital stays... if someone had just done this little test long ago... I'm frustrated. But grateful someone finally did it.
They found that one of Aidan's valves isn't closing.
Can you imagine that, with intestinal blockages?
I'd reported fecal matter in his vomit more than once. Was told "Oh, that's no big deal unless it doesn't stop." We trust doctors because they should know better. I'm surprised Aidan hasn't been worse off.
He will need a nissen fundoplication done. It's a relatively simple surgery, that has some risk, well after the surgery itself. We are grateful there isn't a hernia too.
Aidan's scope:
As I look back at all the years of severe vomiting and ER visits and hospital stays... if someone had just done this little test long ago... I'm frustrated. But grateful someone finally did it.
They found that one of Aidan's valves isn't closing.
Can you imagine that, with intestinal blockages?
I'd reported fecal matter in his vomit more than once. Was told "Oh, that's no big deal unless it doesn't stop." We trust doctors because they should know better. I'm surprised Aidan hasn't been worse off.
He will need a nissen fundoplication done. It's a relatively simple surgery, that has some risk, well after the surgery itself. We are grateful there isn't a hernia too.
I hope there aren't any delays in getting this done. He's almost 7yrs old, he's endured enough of this.
I have no idea if this affects another previous diagnosis or not.
Another neuro:
Reminder of the background...
The first neuro we tried in ID was just a total... psycho... I'm dead serious, I didn't believe it until I experienced it for myself. I was told, "She really knows neurology, in fact she's like a genius,
but I have to warn you, she's insane."
Ya, that pretty much sums it up. She actually has sanctions against her, with. good. reason.
but I have to warn you, she's insane."
Ya, that pretty much sums it up. She actually has sanctions against her, with. good. reason.
The last neuro we tried in ID, well, he was so caught up in proving the previous neuro wrong, (or so that's the excuse from his colleagues) he forgot to actually take care of our boys. I don't have very happy words for that guy, because he put them at major risk, especially Aidan. Grateful we moved on.
It seemed as though all the pediatric neuros that weren't good enough to make it elsewhere came to ID to practice. So down to UT we went. At first, we were thrilled. Aidan received the best help he ever had.
Then the breakdown with Damon's care was our first indicator things are a little lacking there too. His neuro retired right after saying, yes, something is seriously wrong and we'll find out what it is. Those who took over after him, though, refused to persue it with no explanation. The only reason Damon showed any improvement later was we, and his pediatrician, listened to his brothers' therapists and got him into all the therapies right away.
But he still didn't improve dramatically until we managed to convince one of the neuros that he needed anti-seizure medicine too. Once we did, he improved so dramatically we didn't dare say hey, the side effects are really annoying. Even his therapists said, we'll just deal with it, don't mess with the good!
So back to Aidan- As I reported that the meds had lost their effectiveness again, I was told he should be tested for Autism. Imagine my reaction. That was ruled out twice already. Once very recently. It's known that LGS is often mistaken for Autism with seizures. To that, no one could give me any other scenario, but still insisted on the EEG and a "2nd opinion."
This means that Aidan alone, has seen 4 different neuros, as well as several others involved in the EEGs he's had.
Well, the EEG resulted in the decision to make some medication changes.
Couldn't we have done that without the super expensive and miserable EEG?
Of course not, they don't trust parents.
(Or I have a sticky note on my forehead that reads "don't listen.")
Never mind we know our child way better and see all this 24/7. Never mind that we actually care. Never mind that EEGs are proven to be very flawed. Blah blah blah.
Honestly, I don't have an issue with the whole second opinion request, it's all these stinking EEGs I'm starting to get really irritated with.
Why is Epilepsy, still so in the dark ages?!!
We need better testing.
So the last several weeks have given us so much proof of:
Our boys are incredibly smart.
They are super-cute.
And they matter!!!
Okay, I'm done.
Aidan threw up before they even made it home. And then pooped out what seemed to be 5+ pounds of white metal stuff. :/ Couple doses of zofran seemed to help.
He's doing better than last night.
He's home.
He had a great speech session this morning.
He's asleep.
We love him dearly.
So back to Aidan- As I reported that the meds had lost their effectiveness again, I was told he should be tested for Autism. Imagine my reaction. That was ruled out twice already. Once very recently. It's known that LGS is often mistaken for Autism with seizures. To that, no one could give me any other scenario, but still insisted on the EEG and a "2nd opinion."
This means that Aidan alone, has seen 4 different neuros, as well as several others involved in the EEGs he's had.
Well, the EEG resulted in the decision to make some medication changes.
Couldn't we have done that without the super expensive and miserable EEG?
Of course not, they don't trust parents.
(Or I have a sticky note on my forehead that reads "don't listen.")
Never mind we know our child way better and see all this 24/7. Never mind that we actually care. Never mind that EEGs are proven to be very flawed. Blah blah blah.
Honestly, I don't have an issue with the whole second opinion request, it's all these stinking EEGs I'm starting to get really irritated with.
Why is Epilepsy, still so in the dark ages?!!
We need better testing.
So the last several weeks have given us so much proof of:
Our boys are incredibly smart.
They are super-cute.
And they matter!!!
Okay, I'm done.
Aidan threw up before they even made it home. And then pooped out what seemed to be 5+ pounds of white metal stuff. :/ Couple doses of zofran seemed to help.
He's doing better than last night.
He's home.
He had a great speech session this morning.
He's asleep.
We love him dearly.
1 comment:
We struggled with the neuro problem here in Idaho falls too. and EIRMC is the worst hospital ever.
Good luck! Primary's is wonderful
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