The two next seizures happened around the same time of day (on different days). The one on the 21st happened after I put her down in her red chair-she got fussy, but then fell asleep. I was surprised she was sleepy because she hadn't woken up too long before that, but I decided to let her sleep anyway. In her sleep she got a little fussy, which is normal, so I just let her be. Then seemingly all of a sudden she got really mad, held her breath, and into another 2.5 minute seizure. I got that one on video, although, it doesn't look much different than anything we've seen in the past. The next day, August 22, same time (around 11:30am) we were leaving Zion's pharmacy in Kanab after picking up her iron supplement, I put her in her carseat (knowing she wasn't going to like being out down) but I put her down and buckled her in and almost immediately she got mad enough to hold her breath. I quickly took her back out of her carseat hoping to calm her down, but it was too late-into another seizure she went. I tried to take another video, but my storage was full and wouldn't let me. I accidentally took a picture of the episode though, and it is posted at the bottom of this blog.
At this time I still wasn't sure if it was the decrease in topomax causing this increase in seizures or they were just fluke seizures caused by poor timing and lack of oxygen-but these breath holding spells aren't new and haven't been producing seizures like these for a long while..so I just wasn't (and am still not) sure. But the iron supplement we picked up is hopeful to alleviate some of those breath holding spells all together. Apparently, low iron (which she was just barely low) can cause these things-so here's to trying!
On Friday I was extra careful not to let her get too mad to try to stop the breath holding fits before they began. I do not think they are in her control, I think they are a type of release for her, that she gets worked up and her body just gets overstimulated and uses that as a way to let it out..I also don't think she likes it to happen, and neither do I! So I did my best to keep her the happiest, most content that I could. Friday was also the first full day since starting the iron supplement and she didn't have ANY breath holding spells, at all! She had opportunities for them too! For example, in the car on the way to Panguitch for her dad's baseball tournament (he's one of the coaches). She wasn't loving being in the car-right now she can't be out down AT ALL without a fit. ((I'm pretty sure she's just not feeling well right now-I'll explain later)). She got pretty mad in the car and a few times I thought she was going to hold her breath but they were the normal(ish) pause between screams..which I was okay with. Then the ride home she slept, so that was good-and! She was really good through the whole game too! The doctor said the iron supplant wouldn't work that fast, that it is a build up of sorts, but it was still cool! No breath holding episodes! I think it was a record!
Then there was yesterday and today-several breath holding spells (at least 3 that had me really worried) but none that resulted in a seizure! Not even the little tiny "spaced out" ones that usually follow. There were 2 today specifically that I remember happening on saturday that I thought for sure was gonna end badly, but thank heavens they didn't! I had to take her over to a friends house to get watched while I was at work and was so nervous the whole time she was gonna be so rotten and end up having a seizure for Bridget, but Bridget said she did beautifully-I was happy about that!
See, iron constipates babies, and abi has already been seemingly constipated for quite a while, dry sticky stools in small doses. All the while she's had this gnarly rash on and off since we left the hospital Vegas in July (so almost 2 months) I did wonder why it kept coming back, but it wasn't consistent so I just chalked it up to a normal diaper rash. I found out yesterday it's most likely (all signs point to) a yeast infection-this poor girl has had a yeast infection since July and I didn't even know it! How awful is that? It didn't seem to bother her too bad until recently, now it's oh so tender and oh so red and pretty consistent. Poor girl-so she's had 3 seizures in the past week, had been constipated for at least a week and half and has a pretty bad yeast infection. Of course she's gonna be a little needy-this poor thing won't let me put her down for a second before she starts getting fussy and sad. I also think she may be starting to teeth on top of everything else. But! On the bright side, these are all happy normal baby things! Constipation, yeast infection, teething, wanting to be held...they are normal baby things to do, she just adds a little AbiNormal twist to them! Haha and I wouldn't have it any other way.
I also wanted to add in some more information I left out about the eye appt. Abi also has strabismus-which is when the eye kinda "floats" away to the side, or when the eyes aren't aligned looking at the same thing (which is also part of the syndrome of CVI) but the doc said since she does it with both eyes that's a "good" thing-means she's not favoring one eye over the other..I guess I'll take that. You can definitely tell when Abigail can see things and when she can't-other than she follows the object if she can see, her whole face just lights up with a giant smile at all things she looks at. It's pretty neat. The early intervention eye lady came over and gave us some toys to play with and things to try-one of which was a maraca rattle and taught us how to ties it into her hand to kinda get her to keep a hold on things and have it make a noise as she moves her hands around..and if she tries to stick it in her mouth is good. Well we didn't even need to tie it on, she held on to that thing for a solid 3/4 minutes and first thing she did with it was stick it in her mouth. I thought that was pretty neat. Also, today, for the first time EVER she held her own bottle. It didn't appear to be a conscious thing with her, but both of her hands at the same time came up to the bottle and placed perfectly where they needed to be. (Again, I don't think it was a totally conscious thing, but I'll take it!) She placed them there all on her own and I ran with it-I let go of the bottle for a bit and it stayed up! It wasn't a good enough hold to keep a good latch, but I let her hold it as long as she would! I was able to take a few pictures she held it so long! ALSO! The other morning she woke up for her morning feeding and she gets pretty impatient at times (she's a Petersen through and through, they like their food) anyway I put her on her right side with a binky and she calmed down for a minute. I walked into the kitchen to fix her a bottle-took maybe 3 minutes total-she was not calm the whole time, but she wasn't so so mad-but when I came back into the room she was in she was COMPELTELY TURNED OVER ONTO HER BELLY! All by herself she rolled completely over! I thought that was the coolest thing! Her form was perfect too! Arms up in front and knees tucked, it was way too cool.I wish I took a picture! But when I came back in and saw that i cheered her on and she was half smiling with me and half telling me firmly that she was hungry. But I'm counting it as her first roll over! August 21st 2013-Abi rolled completely over to her belly. :)
Okay-last thought, then I'll let you go. I've decided "raising epilepsy" isn't the most accurate portrayal of this blog. Mostly because every case of epilepsy is so different from one another even with the same diagnosis. Like Dr. Sweeney said "the only absolute with epilepsy is that there are no absolutes". Since this blog is specific to my daughter's life with epilepsy I've decided to change the URL of my blog from raisingepilepsy to abigailsepilepsy. I just find it a ton more accurate to our case, as I am not raising epilepsy, I am raising a daughter who has epilepsy. I don't think it will make tooth of a difference to many of you, as most of you just click the link I post, but in case you did notice, that is why I decided the change.
Thanks for reading!
This is AbiNormal!
Abi holding her own bottle!
For those of you curious-this is a picture of what Abigail looks like throughout most of her seizures. I debated putting this one up here, but I figured it may help someone somewhere..and interest others. This particular picture was taken during the 3rd seizure-the last one we've seen for 2 days now!
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