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Please Pray
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Im not one to normally ask for things from people, especially strangers, but in this case I figure anything can help.

As some of you may be aware from it being mentioned in a previous thread I had started about financial/real estate questions. Our daughter had 4 seizures on 8-1 with no clue as to why, and they ran test after test with no hints at all. Because of this they discharged us on 8-3 in the evening with a prescription for zantac for reflux for our almost 3 month old daughter. She had not had any seizures and had been acting normal (except 8-4 where she slept all day), eating normal, etc. On 8-12 at about 9 AM she had a seizure with my wife while they were at a friends house. She came home, and we had talked, since the diagnosis last time and that she hadnt had any zantac since the previous night, my wife and I decided to give her some of that and see where that lead us.

Fast forward to about 1 in the afternoon and our daughter had another seizure, my wife recorded it and we remembered all the questions that were asked and got it in on the recording. (could you stop it with a little pressure, what were her eyes doing, etc). This time, it took a lot longer for her to recover, she spent about 10 minutes searching around in a daze and not focusing on anything. Obviously we immediately went to Nationwide Childrens hospital again and got checked in. When we got to see a Dr, they had pulled up our chart from last time and saw that, we showed them the video, etc. They talked to neurology and they were convinced based on the story, the timeline, the video that it was seizure activity and said they would get us up stairs for monitoring (eeg) and all of that. While we waited on a room, our daughter had a third episode (5:30) and I immediately got a nurse, it was witnessed by several RNs and DRs and we were taken to Trauma and given some drugs to bring her down from the seizure. This one took a lot longer to recover from with about 20 short spastic seizures (like 1-2 seconds) for a good 30 minutes or so.

Since then she was admitted up to neurology and as they were getting measurements (715 or so), she had yet another one, and this is after they had given her the initial dose of anti seizure meds that she will have to take daily. She slept for a good bit and then had a fifth, and so far, final episode at just after 9. Now we are here, all hooked up, feeling completely helpless and heart broken since there is nothing we can do to help her.

All of the larger portions of the seizures were about 90 seconds, on some of them she got pale and light blue around the lips. We know she is in great hands at one of the best childrens hospitals in the nation, but it still heart breaking to see this go on and not have a clue as to the reasons for it. We are talking possibly having to get an MRI to get a better clue as to what it is (if it is a malformed brain or not).

So, like I said, I dont like to ask people for things, but please keep her in your thoughts and prayers if you belive in that.
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Re: Please Pray [140.6sj] [ In reply to ]
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Hoping she gets better soon.
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Re: Please Pray [140.6sj] [ In reply to ]
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You and your family are in my thoughts.

Wag More, Bark Less
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Re: Please Pray [140.6sj] [ In reply to ]
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in our prayers.
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Re: Please Pray [140.6sj] [ In reply to ]
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Re: Please Pray [140.6sj] [ In reply to ]
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I do believe in the power of positive thought....I am sending waves of it your way. best wishes from Stockbridge, michigan.

sometimes
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Re: Please Pray [140.6sj] [ In reply to ]
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I hope they figure it out soon ! Good luck and good thoughts your way.
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Re: Please Pray [140.6sj] [ In reply to ]
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Will do
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Re: Please Pray [140.6sj] [ In reply to ]
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How frightening. I hope a good answer comes your way very soon.

To breathe, to feel, to know I'm alive.
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Re: Please Pray [140.6sj] [ In reply to ]
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I can't imagine how hard it must be for you--certainly much harder than anything I've ever gone through. Praying for all of you.

Check out the Chelsea Hutchison Foundation. They might be a resource for you.

My 2017 Internet resolutions: No personal attacks; no arguments; and no more than a single view and post per thread.
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Re: Please Pray [140.6sj] [ In reply to ]
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Going to send you a PM
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Re: Please Pray [140.6sj] [ In reply to ]
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That sounds really tough. Sending some good thought your way.
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Re: Please Pray [140.6sj] [ In reply to ]
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Every parents nightmare.

I'll be send positive thoughts your way.
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Re: Please Pray [140.6sj] [ In reply to ]
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Thoughts and prayers with you. Our neighbor's daughter has been diagnosed with epilepsy since she was about 5. She would stop breathing usually when she overheated but sometimes there was no "real" reason. All of us in the neighborhood are aware of her condition and we know what to do should it happen. It's made for some scary times, but she is now almost 14 and doing well. Hang in there.

"If one does not know to which port one is sailing, no wind is favorable." - Lucius Annaeus Seneca
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Re: Please Pray [140.6sj] [ In reply to ]
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I'm sorry to hear the news about your daughter. I'll be praying for her and your family. I had epilepsy as a child and thankfully it went away as I grew up. Fortunately most forms of epilepsy are very easily treated with medication.
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Re: Please Pray [Jim @ LOTO, MO] [ In reply to ]
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Jim @ LOTO, MO wrote:
I can't imagine how hard it must be for you--certainly much harder than anything I've ever gone through. Praying for all of you.

Check out the Chelsea Hutchison Foundation. They might be a resource for you.

Thank you very much for the information, my wife was actually reading about seizure response dogs last night.

And thank you all, as of now still no updates, while they have already given her a lot of seizure meds (and we think her temperament has changed, not focusing, yelling instead of crying, etc), they dont think they will catch a active one on eeg, but they are checking to see if they can find/catch an underlying one
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Re: Please Pray [140.6sj] [ In reply to ]
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Sending positive thoughts your way
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Re: Please Pray [140.6sj] [ In reply to ]
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Very sorry to hear this. My grandniece started having seizures right about 3-4 months old. They were able to get them under control and they eventually found that she does not have epilepsy, but rather a very rare genetic maladaptation (which they found with genetic testing when she was 4). The seizures seem to have gone away, though there are other issues involved. She is now 6 and starts kindergarten tomorrow.

Keep pushing them is you aren't getting the answers you need and maybe get a second opinion. My Harlie saw doctors in Kansas City where they live and consultations in San Francisco (UCSF) and Boston.

clm
Nashville, TN
https://twitter.com/ironclm | http://ironclm.typepad.com
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Re: Please Pray [ In reply to ]
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As of now, no more seizures thanks to the meds, but still no cause yet. She hasnt been acting normal since the meds were introduced (they are saying it could be a side effect of hwr getting used to them), so we will see. She isnt focusing or amiling like normal and she is either eating, yelling or sleeping.

As of now, we have an MRI scheduled for tomorrow morning, hoping that provides aome answers.
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Re: Please Pray [140.6sj] [ In reply to ]
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I really am hoping they find the underlying cause as soon as possible. I'm so very sorry to hear that your baby and you and your wife are going through this. Creepy internet hugs ftom afar. Keep on those doctors until you get answers.

************************************************************************************
Harry: "I expected the Rocky Mountains to be a little rockier than this."
Loyd: "I was thinking the same thing. That John Denver's full of shit, man."
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Re: Please Pray [140.6sj] [ In reply to ]
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Went through this with my son. I would be happy to share any info or listen. Pm me.




who's smarter than you're? i'm!
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Re: Please Pray [140.6sj] [ In reply to ]
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     Tough situation. Add good vibes for the family unit from yet another.
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Re: Please Pray [140.6sj] [ In reply to ]
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Is there anything you and your wife need while in Columbus? A number of us are in CBUS and can assist. Grocery run, Ride someplace, Laundry, anything?
Here to help if we can.
Thanks, John
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Re: Please Pray [140.6sj] [ In reply to ]
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You are helping her by being there. The video was a really good idea. She is lucky to have you.

Keeping your family in my thoughts.

Proud member of Fishtwitch and the ST Grammar Police
disclaimer: I am a PhD, not a medical doctor. The closest I get to surgery is topology.
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Re: Please Pray [ In reply to ]
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Oh my god, I dont get pissed easily but now I am. They had told us she could eat breast milk until 1, after she fed at 12:45, they told us that shouldnt have happened and she shouldnt have eaten after 11, per the anesthesiologist. Because of this, the MRI is now tomorrow.

I am losing my mind over this crap (taking so long to get her hooked up to eeg even though she was clustering both times, having her pumped full of meds before eeg is on, now this).

Does anyone have any advice?
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