BlazingRebel daughter thread

Discussion in 'The Mainboard' started by dblplay1212, Mar 19, 2019.

  1. Pile Driving Miss Daisy

    Pile Driving Miss Daisy It angries up the blood
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    Jesus lord, didn't know your scar was that bad. Pretty cool tho
     
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  2. Baron

    Baron Well-Known Member
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    That's one hell of a scar BR, damn.
     
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  3. Sterling A

    Sterling A Well-Known Member

    Sorry I haven't been able to keep track of what's happening with your daughter BlazingRebel . Hope the pathology report gets the best news possible. So sorry you and your family have to go through this
     
  4. BlazingRebel

    BlazingRebel Dog Crew Founder Migraine Connoisseur
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    No worries man, I'm beyond happy seeing the awesome updates you've posted lately. I'm so sorry y'all have had to go through anyone's living nightmare over the last two months. :beerchug: here's to us both posting happy healthy girls next month.
     
  5. BlazingRebel

    BlazingRebel Dog Crew Founder Migraine Connoisseur
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    Getting back to her old self IMG953903.jpg received_259406295004662.jpeg
     
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  6. Detlef Schrempf

    Detlef Schrempf Well-Known Member
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    Man daughters are the best. Glad she’s looking great!
     
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  7. BlazingRebel

    BlazingRebel Dog Crew Founder Migraine Connoisseur
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    received_2311456412510853.jpeg Today is her one month follow up she was feverish all night and sadly she had her first seizure since mid February with her lips also turning blue, so needless to say we are praying for a good folliw up today.
     
  8. dblplay1212

    dblplay1212 Well-Known Member
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  9. BlazingRebel

    BlazingRebel Dog Crew Founder Migraine Connoisseur
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    Nurse took her temp it was 103.5 so we have an appt with her pediatrician after this follow up
     
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  10. dblplay1212

    dblplay1212 Well-Known Member
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    Damn man that's scary. Hope they figure it out.
     
  11. We$tTxO&G

    We$tTxO&G Well-Known Member
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    best of luck partner. im pulling for you and her.
     
  12. BlazingRebel

    BlazingRebel Dog Crew Founder Migraine Connoisseur
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    Good news she doesn't have the flu just a stomach bug. Incision looks great , pathology report came back it wasn't a tumor which is great, but they said it was a chronic inflammatory infection but they don't know how, when, or why plus the surgeon said there is a possibility that it could come back in time and it could be in adjacent parts of the brain. We will just have regular neurology visits, another MRI in 6 months unless her seizures come back, and to just keep her on her meds for however long is needed. :ohdear: basically they don't know and we just have to wait and see?
     
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  13. Detlef Schrempf

    Detlef Schrempf Well-Known Member
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    At least it’s not a tumor that sounds like good news! Let’s go baby girl!
     
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  14. pianoman

    pianoman my drinks are free
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    What meds is she on?
     
  15. BlazingRebel

    BlazingRebel Dog Crew Founder Migraine Connoisseur
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    Trileptal and phenobarbital
     
  16. pianoman

    pianoman my drinks are free
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    That's what I figured. Those are the typical first two ones that are prescribed. Pheno was the first one they gave me but I'm apparently allergic so I broke out in a rash all over my body. Keep an eye on her with the trileptal though. That was another one of my early one's. I started having seizures at two so I can't remember but apparently it caused me to essentially be a drunk toddler. My parents took me off of it after I walked into a wall I was so doped up. Getting the right med combo can take a couple attempts so if you notice her cognitive abilities being hindered make sure you mention it to her neurologist.
     
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  17. BlazingRebel

    BlazingRebel Dog Crew Founder Migraine Connoisseur
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    Keppra?
     
  18. BlazingRebel

    BlazingRebel Dog Crew Founder Migraine Connoisseur
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    They started her out on Trileptal first at .5 ML BID but she kept having breakthroughs until we got to 3.5 ML BID. They also added Phenobarbital to help she started out at 3ML BID and eventually we found the therapeutic dose of 6 ML BID
     
  19. pianoman

    pianoman my drinks are free
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    Keppra was the best for me. That was the last one I took prior to stopping meds completely. The only concerning side effect that some epileptics report is something we call “Kepprage”. Certain patients will see fits of anger. I never experienced it at all and personally it was definitely the drug that provided the best seizure control with minimal side effects for me, but I know others have issues with bouts of rage due to it.
     
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  20. BlazingRebel

    BlazingRebel Dog Crew Founder Migraine Connoisseur
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    The neurologist said that keppra in infants zombified them so that is why she went with phenobarb.
     
  21. pianoman

    pianoman my drinks are free
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    Phenobarbital is supposed to be good, I hear about it a lot nowadays because it's vets first recommendation for dogs when they start having seizures. I would've taken it but again, I'm horribly allergic to it. I hope it works well for her and just keep an eye on her. Getting the right dosage is a balancing act especially with her being so young because as she grows you'll have to be gradually increasing it too. My 4-year old niece last weekend was found by my brother in law in her bed having a seizure so my wife and I had the rest of their kids this weekend while they were at the hospital going through the testing. Fortunately her CT scan came back clean and they think it may be an isolated incident but they're going to do an EEG next week.
     
  22. BlazingRebel

    BlazingRebel Dog Crew Founder Migraine Connoisseur
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    Until that one she had Tuesday morning due to her fever the dosage has been perfect for over 2 months
     
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  23. BlazingRebel

    BlazingRebel Dog Crew Founder Migraine Connoisseur
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    Happy Easter gents 20190421_201454.jpg
     
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  24. BlazingRebel

    BlazingRebel Dog Crew Founder Migraine Connoisseur
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    Mary Elizabeth born at 36 weeks strong and healthy. Diagnosed with focal seizures at 8 months, underwent brain surgery 2 months later, now my little warrior princess turns 1 today.
    received_436001623848624.jpeg
     
  25. bigred77

    bigred77 Well-Known Member
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    Kick ass Mary
     
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  26. Pile Driving Miss Daisy

    Pile Driving Miss Daisy It angries up the blood
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  27. BayouMafia

    BayouMafia slowly learning that life is ok
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  28. BlazingRebel

    BlazingRebel Dog Crew Founder Migraine Connoisseur
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    Successful 1st Birthday party FB_IMG_1558837322040.jpg
     
  29. BlazingRebel

    BlazingRebel Dog Crew Founder Migraine Connoisseur
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    Looks like this nightmare might be beginning again. She is having stare offs, sensitivity to light and sound especially during bad weather. She is screaming in a scream we have never heard and pulling at her hair. Dr wants to do labs next week then EEG in August and MRI in Oct. We are back to recording her and writing down everything for the dr and surgeon again. Fuck
     
  30. dblplay1212

    dblplay1212 Well-Known Member
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    Damn man, I can't even imagine. Stay strong, Dr's these days can do some awesome stuff.
     
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  31. prerecordedlive

    prerecordedlive Matthew Gertz is my real Congressman
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    Dammit. We really celebrated her recovery. I hate to see you guys go through this ordeal again. Please give updates when you can, though.
     
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  32. Nandor the Relentless

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    :doge:

    Sorry to hear. Good luck to Little BlazingRebel
     
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  33. DUCKMOUTH

    DUCKMOUTH People don’t you know, don’t you know
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    Man hate to hear this. T&Ps coming your way.
     
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  34. Bo Pelinis

    Bo Pelinis WE GO HARD ON EARTH
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    They can but you’d be surprised at how shitty they are at brain stuff.
     
  35. BlazingRebel

    BlazingRebel Dog Crew Founder Migraine Connoisseur
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    I'll keep y'all updated,It's tougher now because she is more aware something is wrong and she is in pain :/
     
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  36. tigr2ndbase

    tigr2ndbase Well-Known Member
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    Prayers. My 2 year old that has a couple seizures was laying on the floor rolling around yesterday and it freaked me out as I ran over there to check on her. Luckily she was just being a 2 year old and throwing a tantrum bc the 5 yr old told her no. I’m so on edge with her anticipating another episode. Just knowing how I feel I can’t imagine what y’all are going through. A lot of prayers for all of you.
     
  37. BlazingRebel

    BlazingRebel Dog Crew Founder Migraine Connoisseur
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    The constant dread of her having another is so draining. Prayers sent for your little one.
     
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  38. BlazingRebel

    BlazingRebel Dog Crew Founder Migraine Connoisseur
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    Big day tomorrow 4 hour EEG then seeing her seizure dr. We give her meds until after the EEG, and we were told to pack an overnight bag tomorrow just in case. Going to work after her EEG is going to suck.
     
  39. Sterling A

    Sterling A Well-Known Member

    good luck buddy, P's and T's!
     
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  40. BlazingRebel

    BlazingRebel Dog Crew Founder Migraine Connoisseur
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    Same to you and yours my friend love seeing your thread updates.
     
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  41. bigred77

    bigred77 Well-Known Member
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    We are here with you brothers
     
  42. DUCKMOUTH

    DUCKMOUTH People don’t you know, don’t you know
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    T & Ps my man. I hope all goes well
     
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  43. Boo MFer!

    Boo MFer! UCF has a clown car of talent at RB and WR.
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    Are his brothers having an EEG too?!
     
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  44. ppos31

    ppos31 Well-Known Member

    Thinking about you and your little girl, man.
     
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  45. GunBuns

    GunBuns Nicking a living
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  46. BlazingRebel

    BlazingRebel Dog Crew Founder Migraine Connoisseur
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  47. Pile Driving Miss Daisy

    Pile Driving Miss Daisy It angries up the blood
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    Is this a normal checkup or has she has she still dealt with continuing problems since the surgery? It's been tough to read this thread at times, really thinking about you all.
     
  48. Henry Blake

    Henry Blake No Springsteen is leaving this house!

    Hope it all goes well for her, BR.
     
  49. BlazingRebel

    BlazingRebel Dog Crew Founder Migraine Connoisseur
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    She has been showing signs it might have come back and had some seizures since the surgery. This EEG will determine if they push up her MRI scheduled from October.
     
  50. BlazingRebel

    BlazingRebel Dog Crew Founder Migraine Connoisseur
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