Continuing On...

4/30/13 I left off from February 9th 2013 where the just seemed to stop having the big seizures. It appears that loading dose had worked! She was still fussy though, it's her dang belly. I swear, with this one she has it all. Reflux, colic, eczema, larygomalacia (pronounced lar-in-go mal-ay-sha - that is where the larynx in the throat is not fully solidified yet and closes in on istelf while she tries to breathe..sounds super scary right? Well it sucks to hear also, it's a very heavy, labored breathing sound that makes everyone else in the world nervous, but she isn't loosing any oxygen and apparently she will grow out of it, so i'm okay with it. It seems to be becoming more frequently though--that i'm not too fond of, I think I may go get a second (or 3rd) opinion. Anyway, back to seizures. So at the beginning of February she stopped her big scary seizures. I believe she was still having what I call little micro seizures just from the little bit of knowledge and experience I do have, to me they looked like it. I couldn't ever get videos of them though because by the time I got my phone and the camera on they were over..which goes to show you how little they were. But they seemed to make her frustrated and it was the same thing everytime and she went bright red...all of those are tall tale signs of her previous seizures, so what makes these any different? But trying not to be hypersensitive I called them "stretches" because that's what a lot of them looked like. Then at the beginning of march she started doing this breath holding thing - If I never see one of these again, I would be SO happy. She would all of a sudden get blazing mad and then hold her breath for what felt like an eternity (but was really probably only 10 seconds--I was always too focused on her to count) and get really blue all around her mouth and pale around the rest of her face. The look in her eyes was absolutely devastating, she looked right into my eyes with what seemed like a cry for help. There was nothing I could do and nothing she could do, it was apparent she was not trying to hold her breath, neither did she like when it happened. After she finally took a breath again they were very shallow and she was pale all over and lethargic for another seemingly eternity...then she'd fall asleep for a bit. This happened about 2wice over the period of a week or two, then on March 19th she had 2 of them, then the next day (March 20) had 3 or 4 of them, then the next day (March 21) 1 or 2, and that is the last I remember her having those. She has since started holding her breath again when she gets angry but not for near as long and doesn't get near as blue. Now it seems like a normal angry baby behavior. But on March 20th we went to see her neurologist (I have for her a neurologist, an epileptologist, a genetesict, a primary care physician, a physical therapist, a chiropractor (just because for him) and a NICU doctor and you will probably be hearing about all of them. Thank the heavens for modern medicine right?) Anyway, my neurologist was ecstatic that we had not seen any of the big seizures since the beginning of February. He said that he was not expecting to hear that at all and that was great news! I love to hear stuff like that. I told him about the other "stretches" that I had been seeing but without video or seeing them himself he said it's hard to tell, but he feels I'm pretty smart and if I think they are, they probably could be. I then told him about the breath holding spells -again of which I have no video and he did not get to see- but he said she was too young to be breath holding spells (although all the signs pointed towards that) so that left me believing they had to be seizures--and absolutely the worst ones. During this visit was when I learned that she had not gained any weight from the end of February until now. At the end of Feb she was 10 lbs even completely nude and this visit she was 9.95 lbs fully clothed and had just eaten - so I went to get her a weight check on the first scale and she had lost half a pound - so now I needed to start supplementing, which caused a whole new mess of problems with belly aches and constipation. Also while we were there she had this wicked rash which the neurologist diagnosed as a drug rash and we stopped one her medications - Phenobarbital - right away because that is the most common to cause a drug rash if one was to occur. Now, pay mind that seizure medicines should be weened slowly because if you take someone off of that medication without weening it could make the seizures worse! So I was nervous to do it, but this rash had got to go. He started her on another one in place of that called clonazepam which would also help with her sleep - or lack of it. She was awake all day long..there were days before I brought her in that she was up for several hrs STRAIGHT! Before her visit to the epileptologist she was up for 12 hours straight. She woke up at 7 that evening and didn't fall back asleep that day until 7pm And screaming/fussing the whole time. At 7 she finally got about a 30 minute snooze then was up again another 3 hrs when I fed her, gave her the clonazepam and out she was until 5 the next morning. For about 3 months Abi has had two modes - sleeping and fussing/screaming. And when she was awake there was no consoling her. I tried everything, colic tablets, gripe water, lavender oil, frankincense oils, rubbing her belly, mylecon drops, bouncing, swinging, holding, rocking, walking, leaving her alone, swaddling, undressing, music all the above. Whatever I could but nothing worked. Sometimes one thing would work and then I'd try that again the next time and she wanted nothing to do with it. SO when she wasn't sleeping she was screaming...and she wasn't sleeping much. Her back was ALWAYS arched, even when she slept, she almost couldn't fall asleep unless her back was arched. And not just a little, I mean this little girl was doing back bends. We had to start buckling her into her swing because she would arch so far she'd kinda wiggle her way out of her swing! Okay, so then the breath holding seizures stopped and she was good a few more days with these 'micro-seizures'. Then on Saturday March 30th she started yet another new seizure. This one was similar to the first one in that she slightly postured, meaning went tense and twisted her body - but nothing like the first one. It was mostly just her head that went from one side to the other. First her eyes would do this funky thing and she'd kinda flinch -that's how you knew they were coming on. Then her head would turn to one side, hold, then the other, hold then back to neutral and she would make this gurgling sound while breathing shallowly. Then she'd be completely out of if for a while. These did last for quite a while. Like 4-5 minutes - not the seizure part, but the out of it part. These were happening every 3 hours on the nose, like to the point that we could look at the time and say "it's almost time for another seizure" and within minutes she'd have another one. That is way a-typical for seizures. The other thing that was so bizarre about it is that they just stopped on their own that following Monday night...no change in anything but her formula. See, we had her on enfamil, then tried to switch her to similac - she didn't like that. So then my mom went and got enfamil gentle ease and it made a huge difference, she was sleeping better, less fussy, a little happier overall..That was on the Wednesday before she started having this 3rd kind of seizure. Then Saturday the 30th they started. Jaren and I got home from our cruise the next day, Sunday the 31st. (Longest week ever, SO much fun, but SO long) My mom had run out of gentle ease formula that day so I just started using parents choice, which is what I had at home with the intention of getting more gentle ease when I had the chance... Monday (4/1/13) the seizures stopped - but the fussiness and lack of sleep picked back up again..This is when the 12 hr awake day happened. Extremely fussy all day long and not being able to find sleep. The epileptologist then gave me the okay to give her the clonazepam 2wice a day to help her sleep throughout the day also, so I started that and it seemed to work (for a while, but then she started falling asleep on her own without any seizures so I asked if it could be given as an 'as needed' dose, if given to her early enough in the day as to not interfere with her nighttime dose and that was also okayed)  So we hadn't seen any seizures for 2 days, but she was awake all the time - and if you remember, the seizures seem to come right when she is about to fall asleep. It was that Wednesday (4/3/13), at the epileptologists office, she had another one...of course he wasn't there to see it and we had JUST, literally, JUST taken the last leed off of her head from the routine EEG we had put her on. She [finally] fell asleep (all by herself) during the EEG and was still sleeping after the EEG was over, the tech said "i'll be careful taking these off" was anything but that, so she started Abi awake who then went right into a seizure. I cannot tell you how bugged I was! Not only did she have a seizure after 2 days of nothing, it was at the epileptologists office who didn't get to see it and RIGHT after the EEG was over. How unlucky. That day (since I was in civilization again and had the ability) I again got gentle ease formula for her. I started it that day and the next 2 days were AMAZING. She was hardly fussy! I even was able to get her to smile a few times! She was falling asleep on her own, and waking up without screaming! It was wonderful. 2 full days of happy baby....but the seizures were acting up again, to almost every 3 hours..which ironically correlated with her eating schedule. So it only makes sense that since the seizures seem to happen mostly when she is falling asleep, it would make sense that when she is not sleeping (until absolutely exhausted) that she would not be having any seizures, but when she is calm enough to find sleep, she has more seizures. When we solved one problem the other one arose! The seizures were acting back up pretty prevalent from thurs 4/4 to sat 4/6 when she had one seizure that morning and that was the last one that I had seen until now..4/30/13 ... well there was one on wed 4/10 that was EXTREMELY small and happened in the car out of what seemed the blue, so I don't count that one :) But even still no 'big' seizures from 4/10 until now - that's 20 days! Again, I believe she is still having micro seizures when falling asleep - because she had just fully relaxed but then she startles and both of her hands raise up slowly and her eyes open and she looks to one side (she's not awake, but her eyes open - that's what leads me to believe it's a seizure) then just goes right back to sleep. I hate the fact that she is still having them, but they aren't turning her purple, not making her extremely angry, and are not keeping her awake, so i'll survive. 

Now we are all caught up today. I want to give a brief summary of the last 2 days and then I will let you go until next time:

Yesterday 4/29 - Her babysitter (Sheena) said she had a rough - rough day. She was up around 8:30 and fuming mad until noon that day. Unconsolible, arched back, screeamming. She actually ended up giving her a day time dose of clonazepam - which we had not had to do for a few weeks because she had been finding sleep on her own. Sheena also mentioned what appeared to be possible seizures keeping her awake..ugh! -- but let me just go on a little rant and tell you how much Abi and I LOVE and APPRECIATE Sheena. She is AMAZING with Abigail, so very patient and willing to work with me and her. I adore her. I could NOT have found a more perfect sitter for Abi. I could honestly go on for ever about how sweet, patient, great, perfect Sheena is, and how much I just adore her and her daughter Paislee - When I was recommended to her, I was told she was very good -- that was a HUGE understatement. Sheena is GREAT! She handles Abi so well, I feel so badly when Abi gives her a rough day, but she always takes it with a smile and such grace. She is truly focused on Abigail's well being (and all the kids she tends) she truly is a gift to have! -- Okay, but Abi had a really rough morning and after the clonazepam given her she was a little bit better the rest of the day - a little sleepy, but such is to be expected.

4/30 - today was a much better morning, but a little bit rougher of a night. She was up a lot today, this morning she was just a little fussy, but she was able to find moments of peace. She woke up at 11am and Her and I fell asleep again around 1:30/2pm. Then from like 3pm on is when she started having a little bit rougher of a night. Today she was going on day 4 of no pooping..that can't feel good! She finally got some poopy out this evening, but it took so long! 

The past few days she has been able to find moments of peace in the middle of her fits (which are so stinking cute sometimes - she throws the sweetest little fits). But me, being the hypersensitive mom I have become worries that these periods of 'calm' are actually something else going on in the brain - something we don't necessarily like. During these calm moments she's not really looking around the room - she seems kinda out of it just staring off into space, then when you get her attention again, and she 'comes back to' she gets fussy again. I learned about this reflux syndrome thing called sandifer syndrome and babies with this syndrome do just that - they kinda escape the pain by just zoning out life or something weird. There are also seizures called absencse seizures that could be causing this - or she could just be calm - but I don't always like it when she's zoned out..because it makes me a little nervous - but I don't want her to be fussy either. I just want her to be happy. Not just content.

This is AbiNormal

((I have been meaning to post for 2 days now, and as a result this was way longer than I intended. But a lot of information. Whew! I'm gonna go to bed now.))

Next Time on AbiNormal

- daily 'routine'. (meds/babysitter/evening)
- weekly emails/other 'normal' babies
- a little bit more about the specific disorder 

Let's start from the very beginning.

4/28/13 - As i'm starting this thing 4 months into the journey of a baby with epilepsy I have a million memories and thoughts that I want to write about, so I apologize in advance if the next few posts are all over the place and disorganized. I guess I will start with day one and go from there adding things as I remember them. April 27th 2012 I found out I was pregnant. My pregnancy was flawless, I kid you not. I had one spout of nausea and towards the end dealt with pregnancy induced carpal tunnel, but I actually enjoyed being pregnant, I felt great the whole time. I stayed very active and was working until the day before I had my baby. Honestly, if I could guarantee another pregnancy just like that one, I could do it again right now. December 21, 2012 6:51pm Abigail Kate Petersen was born at a whopping 7lbs 13oz and 18.8 inches long. The poor girl was facing up so the delivery was not as smooth as the pregnancy and she was so swollen all over, but still so dang cute! There was actually a point in the delivery that I had been pushing for so long I made us stop and I fell asleep. I was exhausted! But it was all so worth it. I stayed that night in the hospital and then went home about 7pm the next day. (Most people stay 2 nights in the hospital but my husband was antsy to get out of there and I had an 8 yr old (almost 9) waiting anxiously at home with my mom, so I got out early.) The stay in the hospital was nice enough, I got served steak dinner! But, back to Abi. So that night in the hospital the nurses took real good care of Abi and me, coming in and making sure I was comfortable and taking Abi out so that I could get some sleep and all that jazz. I noticed that Abi, at times, would wake herself up by choking and told the nurses about it who mentioned it to the doctor who concluded that because she was so swollen, so was her throat and it wasn't anything to worry about. (Apparently he had seen it several times before). So we went home and enjoyed being new parents (new for me, new again for her daddy). We quickly noticed a quirky behavior that Abi did every now and then, and thought it was so funky! We thought she would get so mad she would turn her head to one side, and her body way over to the opposite side, so she was twisting, and would go really stiff. Her eyes went way over to the side that her head turned and kinda shake. We actually laughed about it a few time because it was so odd..little did we know at the time this was not just a newborn quirk. She also at times would get so mad and just go stiff and red and would stop breathing and her tiny little tongue would barely be sticking out of her perfect little bow-shaped mouth -- which was shut, and she would discontinue breathing. She didn't go purple or anything - just bright red - so we weren't too alarmed, but nobody liked that one at all from the the beginning. We would try to blow in her face to try to get her to breathe in, but she was completely unresponsive to all of our attempts. She would just come back to on her own. As the days continued I started disliking this quirk a little more, especially the eye movement, I wanted her to stop that because it honestly looked like she was going to strain them so hard she was gonna pop a blood vessel or something! That was the first thing that I noticed and didn't like. Then I started to notice that this wasn't something that she did after she got mad, but indeed was something that preceded the anger, that whatever was happening was actually making her mad. My mom had mentioned seizures but we didn't think they were because they were only happening when she was awake, or so we thought. Then we soon realized that these were happening in her sleep as well, but would wake her up, so that's where we got tricked. Jaren (my husband, her father) looked a little more into baby seizures via google and youtube and all the signs and symptoms pointed to seizures. Tensions were getting higher in my house as we weren't sure what to do. Mom and Dad were pushing going to the Emergency room, which was obvious, but it was Christmas Eve, I didn't want to go to the hospital on Christmas Eve! The next day, Christmas Day, after opening presents, and hanging out at the house for a bit the seizures seemed to be getting worse and more consistent only resulting in higher tensions. After several attempts to taking a video of the episodes to show the doctors in case she wasn't going to perform for them, we took her into the Emergency Room in St. George Utah. 4 days old and I'm at back at the hospital with my baby. That drive the St. George was the longest hour and a half in my life. Her seizures were happening about once every 20 minutes or so and her breathing changed during the seizure, so while we were driving I could hear every time she had an episode and every time it got harder to hear. I eventually just had to fall asleep in the car. We got admitted to the NICU in St. George and spent about a week there. When we first got there they ran a bunch of tests and found out that she was severely dehydrated, her sodium levels were through the roof and that was probably what was causing the seizures. See, Abi and I had a really hard time nursing, and it was a complete struggle for both of us. She didn't want to wake up (seizures are exhausting to the brain and body) and when she was awake she was just screaming at the breast and I couldn't for the life of me get her to latch, then she'd fall asleep again. I was able to get her to latch for very short bits at a time and figured that must be all she needs. Newborns are tiny and they don't eat a lot at first. And at this time we thought the dehydration was causing the seizures-so we thought, she couldn't eat because she was having these seizures, but not eating caused her to be dehydrated which caused her to have seizures which caused her to not be able to eat! So, we thought we figured it out and were on our way to fixing it, but it would take a few days for them to level out her hydration levels. They had to bring the sodium levels down slowly or it would cause further problems. After her hydration levels were regulated and she was still having these seizures we were then at a loss as to what was causing them, but still looking! An MRI, spinal tap, and multiple blood and urine tests later there was nothing - no reasons AT ALL that she should be having these seizures. So bittersweet. So frustrating that there were no answers out there, but good to know there was nothing substantially wrong with her. And we were assured that these seizures weren't hurting her, just being pesky, made things a little bit easier to handle, but I still wanted this to stop! So we put her on phenobarbital and sent her home (after a few days of monitoring). We came home Jan 2nd (I believe). A few days later those pesky seizures were starting to show up again, so I called and we just increased her dose of Phenobarbital. Jan 8 I went back into St. George to meet with the geneticist to get some results of previously taken tests, get some more tests, and an overall check-up. The next day Abi started having seizures every 5 minutes. She was completely content the whole time, but every 5 minutes she would crane her head and body, I called the NICU and was told to come back in. So about a week later, we were back in the NICU for more. We took more blood and urine for more tests, did another spinal tap, and the works. This time we were in the NICU until I believe Jan 14th. Maybe 17th - they ended up adding 2 new medicines to her list - Keppra and Topamax (topomax?).  Even with the 3 medicines she was still having episodes! Not as often, or as severe it seemed, but they were still there. We pinpointed the seizures to happen right as she was about to fall asleep. Literally as she was about to fully relax into a deep sleep she would have a seizure and it would wake her up and she would just scream for hours until I guess she got tired enough to 'beat the seizure' and finally find some sleep. Although the NICU in St. George was working hand in hand and in real time with Primary Children's hospital in Salt Lake, we still thought it a good idea to actually get some face time up there. So we got an appt with a neurologist on the 'fast track' to the seizure clinic - So we needed to get seen by her and get her sign off that we should be admitted, which we did. They basically said that the NICU in St. George was very thorough and ran all the tests that they would have run there and there wasn't much more to do except the one in a million chance tests that take a long time for the results to get back...so we went ahead with those. We got out of primary children's at the end of January sometimes (very end) because within the week we all left to go to Disney Land to party with my family. It was nice to have so many people there to help with Abi. It really does take a village for this one - she can be quite the challenge, but even while screaming in your face she has such a charm about her that is absolutely captivating. Disney was awesome overall and at the beginning of the trip she was doing well - they had increased her doses one more time and the increase medicine had started to kick in. But by the end of the week her seizures were again rearing their ugly head. So on February 8th, on the way home from California we stopped at the Emergency Room again in St. George to get another loading dose of phenobarbital to again put the seizures at bay. This was the last time we have seen those types of seizures. We made it a few weeks before we saw any other type of seizure behavior -- well ones like that, there were lots of little things she did that I think were and are seizures, but they are so micro it's so hard to tell. But as of February 9th 2013 we have not seen the same seizures that were first presented. We will soon come to see a few new kinds in the future - but I'll leave that for next time.

This is AbiNormal.


Next Time on AbiNormal

- 2 new types of seizures
-collic/reflux
-screaming ALL the time, arching back badly.
-very little, if any, sleep.
-heavy/labored breathing
- lost half a pound between end of feb/beginning of march
(a lot of this stuff seems like forever ago, but it really hasn't been that long! weird)


- happier overall - used to sleep or scream, and wasn't sleeping much.

What is AbiNormal?

4/27/13 One year ago, today, I found out that I was pregnant. I couldn't believe it! I almost expected it, and very much hoped for it, bu did not believe it. 4 months ago, I gave birth to the most gorgeous, sweet baby girl. We named her Abigail Kate. Abi, or Abi K for short. She is my world and I couldn't wait to get life started with her! Little did we know that life had something else in store for us. Abi was born with a gene mutation that results in neonatal epilepsy. We didn't know about the gene mutation until 10 days ago, so for 3 and 1/2 months we were clueless as to what was causing the seizures. As you can probably imagine, epilepsy brings a whole new set of challenges to raising a baby. Things that we be abnormal and for 'regular' babies are completely normal for Abi--So, in our instance, it is not abnormal, it's AbiNormal. My plan for this blog is to keep a journal, if you will, about all of Abi's AbiNormal behaviors and keep track on her progress as we deal with and fight this thing. She has had kind of a rough go at life so far and we are working on making her more comfortable. I plan to start from day 1 and outline how and when we realized this 'behavior' that we observed was indeed not just a newborn quirk, but was actually something more than that. At first we thought it was just something she did when she got angry, but soon realized instead that it was just the opposite...this behavior is what caused the stress and anger. In this blog I will outline what the seizures looked like, how long they lasted, and what we did for them. Abi today is doing much better overall, we still have quite a ways to go before we are in the clear of this (and we may never be) but we will never give up. We live life day to day and take this epilepsy thing step by step. There is no real consistency with the episodes, and in turn her behaviors, we just have to go with what the day brings..but no matter what the day was like, I go to bed every night thanking the Lord for this most wonderful blessing that has been put into my life.

This is AbiNormal.