April 16th - 19th Abi had an at home video EEG on - during those three days she was super uncomfortable most of the day and even puked about 3 times in that time span. She was warm but didn't seem to have too much of a fever - but still just very uncomfortable. Then on Saturday the 19th she just got happy - I didn't change anything - she just was feeling better. She had a few good, happy days with no seizures then started having one a day - then two or three a day - then all of a sudden was having one every hour (pretty much exactly). She did that for 2 days and then just all of a sudden stopped..Again, I didn't change anything with her meds or her food or anything. She had a few more good days of happy, seizure free (or mostly seizure free) days. Then Friday May 2nd she woke up unhappy - she was a little warm so I knew a fever was probably coming again. She stayed pretty uncomfortable all day and the rest of the weekend with fevers and such all weekend long. Big hot fevers that made her sweat and arch like a gymnast and scream - I had to go be in Salt Lake to take my mom to the airport and for an interview that next Monday..May 5th.
We went up Friday after my graduation and by Monday night her fever still hadn't gone away, but instead got up to 102. So I brought her to the ER just to be sure there wasn't something I was over looking with an infection or something. My gut was that she was just teething or something and there was not a bacterial infection, but I just wanted to be completely sure since we were right next to a hospital in Salt Lake and about an hour away from the closest one in Orderville. We also had gotten a urine analysis and a blood test not too long before this fever cluster (because these fevers have come and gone before) and both came back negative. Same thing at the ER this time. All results came back negative and they weren't super worried about the fever. They said not to worry until it gets to be closer to 105...well, okay. Just try to keep her comfortable...which I have found a luke-warm bath to do very effectively. Also, I asked for an enema at the hospital...get this - it yielded nothing. Weird right? She hadn't pooped a full poop in days but nothing came out with the enema..and even the enema tube came out completely clean! (T.M.I? Oh well). Anyway, we stayed one more night in Salt Lake since by the time we got out of the hospital it was too late to drive home. The next morning she woke up happier and cool. So it seemed she was on the downslope of this fever bunch, but I put some peppermint oil on her skin, kept her pants off, and put a cool wrap around the back of her neck for the ride home anyway, just to be sure. She was an angel the whole drive. She sat back there in her carseat and cooed most of the way. (Max slept the whole way-until I stopped in Panguitch where I fed him, then he slept again).
We got back to Orderville Tuesday around 3:30 - 4 pm. She's been happy and seizure free since Tuesday the 6th. She made it like that for 2 days when she had her first seizure on May 8th. Then she had another one on the 9th, then about 3 all day yesterday. Today she has started the every hour thing again with her seizures. It hasn't been as consistently every hour as it was the last time - but pretty close. 6:30 - 7:30 - 8:45 - 9:30 - 10:30. Then she didn't have one again until 3:00 then again at 4:00 then her most recent one at 7:00. She's been extremely calm today and smiley as all else, but pretty lethargic and weak - Makes sense though.
She's just so consistently inconsistent and that's what makes treating her harder. I can't help but hope this complete irregularity in her seizures is somehow connected to her outgrowing them - but I'm also pretty sure that is just wishful thinking..would be nice though! And I'm pretty sure the fevers are connected to her teething. I wonder if the teething causes the fevers which causes the irritation and lack of seizures then it takes a few days for her body to relax enough to allow the seizures to present themselves and that's where the 1 an hour comes into play - then the cycle happens all over again.
This is only round 2 of the cycle that I've noticed - and I called it last week when she was in the middle of her fever bit. I said she will get over the fevers and be fine for a few days then start having more seizures, then have one an hour for a day or two, then be fine. Let's see if i'm right. I don't want this cycle to continue..but if it does at least I'll have an idea of what to expect!
There doesn't seem to be any signs or symptoms of anything else. I also haven't heard anything from either neurologist in a while - but in her case, no news is good news. I'm going to email them tonight and see what her 72 hr at home video EEG showed, if it showed any changes at all with the Potiga. I also want to take down her vimpat back to 3mL instead of 4.5mL .. since taking back the Keppra didn't seem to affect her seizures at all - i'd like to take a look at pulling back on the Vimpat too.
Thanks for visiting! Talk to you all soon!
This is AbiNormal
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