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  #21  
Old 13 June 2018, 13:37
justamedic justamedic is offline
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Quote:
Originally Posted by wildman43 View Post
Try an contact Shriner (sp) Hospital, They do great work.
Shriners is a great hospital that is worth checking out, but their primary specialties are children with injuries and burns as well as cleft palates.

St. Jude’s Research Hospital is a specialty children’s hospital also that has a neurology department. That is more in line with what appears to be happening. They are in Memphis.

First, Just11b, go to your appointments with your scheduled providers. As I said earlier, don’t hesitate to ask about these places if you want (or if you feel your doctors aren’t doing their best after you’ve asked for clarity.) Remember to ask questions, because sometimes what you’d like is not what’s best; that’s why second opinions are important.

ETA: Also, one more piece of advice. Do not go looking at web sources such webMD or wiki... they are not reliable sources and have mostly inappropriate worst case stuff on there that will drive you bonkers. If you do end up searching online make sure you’re looking up scholarly research and things of that nature. I would advise against this, and talk to your doctors. Their education is more reliable than a google search.
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Last edited by justamedic; 13 June 2018 at 13:46. Reason: Last part
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  #22  
Old 13 June 2018, 13:37
ET1/ss nuke's Avatar
ET1/ss nuke ET1/ss nuke is offline
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Quote:
Originally Posted by justamedic View Post
As others have said, don’t beat yourself up about what happened before; this is NOT your fault.
It's a lot easier said than done, but justamedic is absolutely correct. Your military background can actually be instructive about this because of the basic motto of embrace the suck: when you are tired, cold, wet, hungry, stressed, and sleep-deprived, but you can't do anything about the causes of those circumstances, you have to focus on what you actually can influence and move forward within the best of your abilities.

In your current situation, you can't do anything about whatever it was that brought your little one to this point, so there is no useful point in obsessing over that; instead, you must focus on what you can still influence: the well being of your spouse and the remainder of your family; your own continued capability to be a source of strength to those who depend on you; and your steadfastness in pursing a more accurate diagnosis, prognosis, and treatment of the condition.

If you can get those most important three things into the best shape you can manage, THEN you might look into any environmental factors around your home, inheritable or genetic traits, rare side effects of something medical or dietary, etc., but bothering about any of those things before taking care of the primary three concerns is not just putting the cart before the horse, but can actually distract from your pursuit of the three primary objectives and handicap your ability to deal with them. FOCUS! Your little one deserves it. Self-consuming grief and searching for whom to blame does him a disservice.

Edit to add: I'm sorry if that seems a bit harsh, but I speak from lessons learned too late. I buried two infant children.
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Last edited by ET1/ss nuke; 13 June 2018 at 13:43.
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  #23  
Old 13 June 2018, 15:54
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We will put your son and your family in our family prayer tonight. As others have said, your family needs you to be the rock, stay strong, and never stop seeking help.
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  #24  
Old 13 June 2018, 19:35
RemTech RemTech is offline
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11B - Emerald coast is an easy drive to these resources:

https://ufhealth.org/specialty/pediatric-neurology

The folks at Shands saved my life - I would trust them with my child's well being.

https://www.mayoclinic.org/departmen...e/orc-20117057

It's friggin Mayo.

Your son and family are in our prayers.

Do not beat yourself up - do not go to dark places - stay present and engaged.
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  #25  
Old 13 June 2018, 19:41
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Stay strong, just11b.

You and your family are in our prayers...
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