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  #31  
Old 05-03-2016, 04:59 PM
BeccaCCKK BeccaCCKK is offline
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I agree about the ER. Going through the ER is the only way I was able to get the neuro, CT Scans, MRI, x rays, and all the monitoring I needed. My PCM was amazing but her hands were tied. A body that collapses will fall under emergency care no matter what the cause.
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  #32  
Old 05-04-2016, 04:12 AM
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How scary! I'm so sorry you guys are going through this.
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  #33  
Old 05-04-2016, 06:02 AM
NadiaRose NadiaRose is offline
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We are getting some good recommendations on neurologists. The referral is the biggest hurdle. Now we just have to pick a neurologist and get in to see them. It's difficult with everything being so far away. I'm hoping hubby gets home early tomorrow so we can go through the list and get some phone calls in.

The next time it happens and I can catch it early enough, I will attempt the ER. It is so bare bones here though, not sure how much good it will do. I guess if they shockingly have the equipment and do see something, it will be something else to put in his file. You would think they would be better equipped since we are in the middle of nowhere. They are even building a new hospital but I really don't see the point unless they are going to make it super awesome. Currently they send everyone to Los Angeles or Vegas for big stuff.
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  #34  
Old 05-05-2016, 03:16 AM
Veganmamma Veganmamma is offline
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They must have the ability to do eeg in the ER because it can diagnose seizures and diagnose strokes too...

Hang in there!!! You and your husband sound like very responsible parents both willing to do whatever is necessary for your son.
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  #35  
Old 05-06-2016, 05:34 AM
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Good lord, Tricare is so stupid. I'm thankful for having insurance but dude, the neuro they put on the referral does.not.exist. We called one that someone recommended. She's all the way in LA but Nothing here is close. They gave us an appointment in July. Gah. We are still calling other neuros to see if we can get something closer and something sooner. Then we'll cancel with the other one. It's a start though.
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"Our culture has accepted two huge lies.
The first is that if you disagree with someone’s lifestyle,
you must fear or hate them.
The second is that to love someone
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to be compassionate."

~Pastor Rick Warren~

  #36  
Old 05-06-2016, 05:34 AM
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I know how tiny it is. But I bet that have an EEG. It wouldn't really surprise me if they didn't, but I bet they do. Here's hoping you don't need to find out and that you get an appointment fast
~~~~~~~
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Last edited by HugnKiss; 05-06-2016 at 05:37 AM. Reason: Automerged Doublepost by CDN
  #37  
Old 05-06-2016, 11:57 PM
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He had another episode this morning. I had an appointment I couldn't get out of so hubby took big man to the ER. They ran a gamut of tests, took blood, did chest xray, cat scan... Everything has come up clear so far. Waiting on blood test results at this point and will follow up with another doc appt just because. They did say that if neurology turns up nothing when he finally has his appt, that we should consider a referral for cardiology. Me thinks that maybe we should just go ahead and get the referral and do both appts to cover all our bases. EKG came up clear when they did one in the doc's office but I guess it wouldn't hurt to have an actual specialist take a look at him.

The power of minecraft, I'm tellin' ya. Normally it takes a hoard to hold him down for blood tests. He got to play his tablet whilst the vampires went to work on him and he was dang skippy. lol.

Too much adulting today.
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"Our culture has accepted two huge lies.
The first is that if you disagree with someone’s 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.
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  #38  
Old 05-09-2016, 02:33 PM
HugnKiss HugnKiss is offline
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I'm sorry he had another episode. But glad you have some tests and referrals under way
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  #39  
Old 05-09-2016, 03:51 PM
jujusmommy jujusmommy is offline
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Poor boy! Ugh, between military doctors, VA doctors and Tricare, I'm fed up. I feel your pain. DH's episode in January that left him hospitalized with half his body paralyzed was icing on the cake. After fighting even VA neuro for months we figured out from civilian doctors he was having hemiplegic migraines....and his symptoms go back over 10 years. Oh and the check pains...yes those are real and he has a diagnosis...symptoms go back over 10 years for that also including a diagnosis that was BURIED in his medical records!!!! Yet the VA is still saying it is all made up, even after him seeing a top migraine neurologist who has diagnosed it and is treating him!

Anyways, fight for him. Keep going to the ER each time. Whatever is going on might not be something they are considering. It just takes one doctor to think outside the box. The VA doctors should have caught DH's hemiplegic migraine. The military doctors should have caught it! He was discharged as having a tension headache. It took 6 weeks to get him on medicine and even now at 4 months out he is still struggling. That week took so much out of him, not considering the years he had them go undiagnosed. You know my number, feel free to call and vent. And You guys are amazing parents!
  #40  
Old 05-10-2016, 11:40 PM
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How's he doing?
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  #41  
Old 05-11-2016, 02:46 AM
Veganmamma Veganmamma is offline
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I can not believe he didn't get an EEG at the hospital (ER) following a suspected seizure.

I agree with keeping going to the ER each time.

(((hugs)))
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  #42  
Old 05-11-2016, 04:18 AM
NadiaRose NadiaRose is offline
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He doesn't seem to have had an incident in a few days. We are still going through the list of neuros. Lordy what a headache.
~~~~~~~
Quote:
Originally Posted by Veganmamma View Post
I can not believe he didn't get an EEG at the hospital (ER) following a suspected seizure.

I agree with keeping going to the ER each time.

(((hugs)))
Hubby took him in and I had told him I wanted him to ask them to do one but he said they did a cat scan instead.
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"Our culture has accepted two huge lies.
The first is that if you disagree with someone’s lifestyle,
you must fear or hate them.
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You don’t have to compromise convictions
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~Pastor Rick Warren~


Last edited by NadiaRose; 05-11-2016 at 04:22 AM. Reason: Automerged Doublepost by CDN
  #43  
Old 05-11-2016, 06:09 AM
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Odd question for you? Did he get a meningitis vaccination in the last few months before this started?

I have a reason for asking

A friend of mine son got his meningitis vaccination back in January and a few weeks after started passing out and such. Right now he is in a wheelchair and it is believed to be Dysautonomia which seems to be a direct result of the vaccine or virus. It seems to also effect non neruo typical people
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  #44  
Old 05-11-2016, 10:59 PM
NadiaRose NadiaRose is offline
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Quote:
Originally Posted by thewayhome View Post
Odd question for you? Did he get a meningitis vaccination in the last few months before this started?

I have a reason for asking

A friend of mine son got his meningitis vaccination back in January and a few weeks after started passing out and such. Right now he is in a wheelchair and it is believed to be Dysautonomia which seems to be a direct result of the vaccine or virus. It seems to also effect non neruo typical people
We don't vaccinate.
~~~~~~~
We stopped vaccinating when he was about 9 ish. He is 15 now.
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"Our culture has accepted two huge lies.
The first is that if you disagree with someone’s 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 don’t have to compromise convictions
to be compassionate."

~Pastor Rick Warren~


Last edited by NadiaRose; 05-11-2016 at 11:01 PM. Reason: Automerged Doublepost by CDN
  #45  
Old 05-12-2016, 02:01 AM
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thewayhome thewayhome is offline
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Well then scratch that possibility.

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