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Discussion in 'The Mainboard' started by dblplay1212, Mar 19, 2019.
Jesus lord, didn't know your scar was that bad. Pretty cool tho
That's one hell of a scar BR, damn.
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
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. here's to us both posting happy healthy girls next month.
Getting back to her old self
Man daughters are the best. Glad she’s looking great!
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.
Good luck BlazingRebel
Nurse took her temp it was 103.5 so we have an appt with her pediatrician after this follow up
Damn man that's scary. Hope they figure it out.
best of luck partner. im pulling for you and her.
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. basically they don't know and we just have to wait and see?
At least it’s not a tumor that sounds like good news! Let’s go baby girl!
What meds is she on?
Trileptal and phenobarbital
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.
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
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.
The neurologist said that keppra in infants zombified them so that is why she went with phenobarb.
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.
Until that one she had Tuesday morning due to her fever the dosage has been perfect for over 2 months
Happy Easter gents
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.
Kick ass Mary
No Naps indeed
Successful 1st Birthday party
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
Damn man, I can't even imagine. Stay strong, Dr's these days can do some awesome stuff.
Dammit. We really celebrated her recovery. I hate to see you guys go through this ordeal again. Please give updates when you can, though.
Sorry to hear. Good luck to Little BlazingRebel
Man hate to hear this. T&Ps coming your way.
They can but you’d be surprised at how shitty they are at brain stuff.
I'll keep y'all updated,It's tougher now because she is more aware something is wrong and she is in pain :/
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.
The constant dread of her having another is so draining. Prayers sent for your little one.
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.
good luck buddy, P's and T's!
Same to you and yours my friend love seeing your thread updates.
We are here with you brothers
T & Ps my man. I hope all goes well
Are his brothers having an EEG too?!
Thinking about you and your little girl, man.
BlazingRebel , love you man. Wishing all the best.
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.
Hope it all goes well for her, BR.
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.