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
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