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  #46  
Old 06-08-2016, 09:42 PM
NadiaRose NadiaRose is offline
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This stupid ER, I swear. He has had a couple more ER visits to get incidents documented. This last time he fell and hit his head on the wall, leaving a nice, big lump. The ER didn't bother looking at his lump, and then proceeded to tell me all this stuff they should probably do, but they can't do because they aren't equipped to do. Smdh. All they ended up doing was drawing blood to check cortisol levels. Which evidently they didn't draw correctly because they want us to come back in to-~FARK~ing-morrow so they can do it again. So now I have a child freaking out because he has to get poked again. So freaking pissed that they can't even manage a blood draw. And it's not because they found something and need to confirm or screwed up the test, because it's a send out test. Next time we will drive two hours to San Bernardino to get to a better ER. So pissed.

We are still waiting on his neuro appt for next month. We are also trying to get all his med records from his doc and behavioral health doc. My stomach is in knots and I'm so darn frustrated.

Top everything off, we've been trying to read all we can and hubby found this post and it's almost exactly what we are dealing with.
http://www.autism.com/symptoms_seizures_puberty

He's been very high functioning to the point where most don't even believe us that he is autistic until they spend significant time with him. Puberty came with so many issues. Regression, behaviors, he's having a really hard time with school this year, etc.
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  #47  
Old 06-08-2016, 10:04 PM
AngelicScars AngelicScars is offline
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The hospital has screwed up blood draws from my son a handful of times that they just waited until he was put under for his MRI. I hated all of that. I'm sorry you are having to deal with the same thing.
Due to my son's seizure types, puberty had a high chance of triggering new seizures. It's just something we expect will happen. I didn't think about other diagnosis to trigger the same.
I really hate that you are having to wait so long. ��
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  #48  
Old 06-09-2016, 12:11 AM
Veganmamma Veganmamma is offline
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I think you are open to something very important. Drive the 2 hours to the better ER next time to get the EEG. That article is very very interesting and once again it suggests getting EEG 12-24 after the suspected seizure or sooner. They don't actually do anything for him anyway at your ER. And for the repeat blood work, I'd wait till the next episode if it causes your son anxiety to repeat. Also, that article is scary because it suggests if you son is having that exact type of seizure related to puberty aand Autisim, the seizures can cause damage to your sons function. Obviously the EEG is the most important following the next episode.

Hang in there!!!
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  #49  
Old 06-09-2016, 06:48 AM
NadiaRose NadiaRose is offline
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Quote:
Originally Posted by Veganmamma View Post
I think you are open to something very important. Drive the 2 hours to the better ER next time to get the EEG. That article is very very interesting and once again it suggests getting EEG 12-24 after the suspected seizure or sooner. They don't actually do anything for him anyway at your ER. And for the repeat blood work, I'd wait till the next episode if it causes your son anxiety to repeat. Also, that article is scary because it suggests if you son is having that exact type of seizure related to puberty aand Autisim, the seizures can cause damage to your sons function. Obviously the EEG is the most important following the next episode.

Hang in there!!!
To the bolded, that is actually something always on my brain before this even started. I've seen him degrade so much over the last year or two. We thought it was just puberty and hormones and inability to manage anything. He's been seeing a couple docs for over a year now. We leveled out his mood so I don't get beat up daily now. However, he has had a really rough time with school and just isn't the same. So much just clicked after reading that article. It's like they were describing my son. It's horrible watching him regress. We've put so much time, effort, and money into therapies, interventions, behavior modification. I feel like all of that is just circling the drain because no one will freaking listen to us. My gut keeps pushing me forward on this and I've been saying it from the start. Now I feel like I have more of a foundation for my concerns.

After talking to hubby, we are not putting him through a redo of a blood test that was just a grasp at a straw anyway. They can bite me. Absolutely worthless hospital. You would think that with this being the National Training Center and the sheer amount of injuries that occur, they would have better facilities. SMH.

I also still need hubby to change the kids' PCM. She is nice but just as worthless as the ER.
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  #50  
Old 06-09-2016, 02:51 PM
Veganmamma Veganmamma is offline
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I am so sad if you have seen regression after the suspected seizures. When is the neurologist appointment?
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  #51  
Old 06-09-2016, 09:50 PM
NadiaRose NadiaRose is offline
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We never put the two together since we didn't even realize what was going on. I think he's been having them a lot longer than we know. He hides it from us. The only reason I even know at this point is because they've started happening in front of me. Which makes me think they've intensified, in strength and/or frequency. Ugh.

His appt is July 19. It was the soonest we could get. Now I'm praying we can get all his med records together for the appt. The clinic is dragging their heels.
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"Our culture has accepted two huge lies.
The first is that if you disagree with someoneís lifestyle,
you must fear or hate them.
The second is that to love someone
means you agree with everything they believe or do. Both are nonsense.
You donít have to compromise convictions
to be compassionate."

~Pastor Rick Warren~

  #52  
Old 06-10-2016, 05:45 PM
LisaEileen LisaEileen is offline
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I consider myself to know a lot about autism, but I never heard of that before. That is so scary. Victoria is already in the midst of puberty and she's not even 11 yet. I will be keeping an eye out in the next few years to make sure she's not experiencing that. Medical care sucks.
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  #53  
Old 06-13-2016, 04:42 AM
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