At a loss this time...

     I'd like to think that, when it comes to Abi, I've got her pretty figured out. If something changes I can usually make a good educated guess as to whats causing the change and when it will get better, or what the next logical step would be. This time however, that is not at all the case. She has been very irritable for the past week now and I cannot figure out why. There are SEVERAL possibilities and theories that I have, but I just can't pin down the one most likely. Now, I know that there is this crazy, unexplained, completely AbiNormal connection between when Abigail gets very irritable and the number of seizures she has that day-it actually decreases. I have seen it on many more than one occasion. It is an observation I have made several times..But Abi has had 0 - yes ZERO - seizures since Jan 3, and she only had 1 on Jan 2. Abigail started getting a little irritable on New Years Eve (12/31) and On New Years Day (1/1) was when we saw the first decrease in seizures to 5 that day from and average of 8 or 9 per day, then on (1/2) she only had 1 then (1/3) she went down to 0 and has had none since then! Since I had seen that connection before I was not at all surprised to see the decrease in seizure activity, but I am surprised that I STILL haven't seen one, even though she has started to calm down.
     She started with just seeming like she was uncomfortable, like she wasn't feeling too hot. Her older sister and Dad both just got over sicknesses (well, Olivia was actually getting over her 2nd sickness in that week-she got sick, got better, then got sick again) so I figured Abi was getting a little of what they had. I noticed she was pretty warm fairly often - not 106 degree fever like back in July, but warm enough that I would strip her down to her diaper and pat her down with a cool, damp cloth. I'm not sure if I had mentioned this in any previous posts but Abigail has had some trouble sleeping for quite a while. She wakes up around the same time every morning (between 3:30 and 4:30 am) screaming and arching. I learned that if I just let her scream she will eventually find sleep again, but not without a fight. When we finally got home from Christmas vaca, the night of Jan 1st, I gave Abigail some Tylenol just to try to soothe her high temperatures and whatever else might be giving her some pain. Abigail slept more soundly that night than I think she ever had in her life before that! The way that I laid her down that night is the exact same position I found her the next morning. She didn't budge. She didn't arch, she didn't toss, she didn't make one peep. It was incredible! Even when she is sleeping well I will usually find her turned sideways or something in the morning -- this morning, nothing..as sound as sound can be (i'm still in awe about it). I figured that was the trick, that Tylenol was all she needed and she'd be fine!
     I was shocked when I found out how pissed she was at her babysitters house that day. It was our first day back and Abi was FURIOUS. She seemed to be in SO much pain and pretty much inconsolable all day long. Shiree was able to calm her down once or twice and got her to eat a little but nothing more. The next day was the same, only Abi was mad enough and in enough that Shiree even called the school to ask if there was something more she could do-I told her about Abi being warm and to try the stripping/patting thing so she did. When I got there at the end of the day she said that seemed to work for a little bit and then proceeded to tell me that her kids used to get pretty upset with an ear infection. An ear infection is not something I would have EVER thought about on my own. I took her in and the doc saw a little bit of red in one ear so we started her on Amoxicillin. Little did I know that Amox. causes tummy troubles and diarrhea! I'm not sure that if I knew that, that I would have started it at all..but it's good I did because her pediatrician yesterday confirmed redness in both her ears. So now Abi is dealing with potential sickness, potential ear infection, tummy troubles, and diarrhea..she has not been happy AT ALL.
     On top of all of that we started a new medicine that could very well be contributing to any or all of this. The medicine is Potiga, and last time I posted we had just gotten the clear for it and I was going to pick it up and start her the next day-which we did. So Abigail started Potiga on Dec 27th. The way her first few doses were set up made it so that we probably wouldn't see any results for at least 2 weeks - the dose we want to work up to is 45mg/day. That would be given to her 3x per day at 3mL per dose...We started with 1mL once a day, at night...so I really didn't (and still don't) think Potiga was playing any role in her seizure activity, or decrease in seizure activity. We have since moved up to 3mL once a day, but still that is only 1/3 of her target dose and only once a day on a medicine that is supposed to be given 3 times/day.

Abi has literally been inconsolably pissed for a whole week now and there is seemingly nothing we can do to fix it.

Here is my 1st theory to why Abi is so upset:

Abi has started teething, which caused the ear infection. The pain of teething and ear infection is what was causing the irritability and the irritability is what caused the decrease in seizures. We then put her on the Amox. and that just irritated her belly and made it so that she was even more upset..
We have tried tylenol and ibuprofen for the teething (sometimes it would show an effect, sometimes it wouldn't seem to have any effect at all). We tried mylecon drops for the gas she had been exhibiting- again, sometimes it would show to be effective, sometimes not. I started the Aloe back up (if you remember from last post I stopped the Aloe juice just to see if it had an effect on her rash--as I expected, it didn't) it def made her more regular but her stools were still very hard ((we got the OK to take her off the Iron, finally! let's hope that helps with that!))
--> my husband thinks I'm crazy and it's very illogical to chalk the lack of seizures up to simple irritability when we just started a new medicine for the very purpose to stop the seizures...even though she's not even close to her full intended dose.

Here is my husband's theory to why Abi is so upset:

Like we have also seen on multiple times, it seems like Abigail's seizures, at times, act as a release to her. It almost 'resets' her brain to where she can calm down. He believes that the Potiga has made it so that she can't have seizures and that makes her brain mad. So the Potiga is the reason she is not having the seizures, and the fact that she is not having seizures is what's making her so upset because now her brain can't 'reset' and calm down.
-->His is not a terribly awful theory, but, I personally, just do not agree that 1mL of potiga (which is 1/3 of a dose) once per day (which is also 1/3 of what her daily dose should be) would have ANY impact at all on her seizure activity. ((Like I mentioned before, Abi is working up to a full dose of 3mL 3 times per day (so 9mL total in the day). It just doesn't make sense that 1mL a day would have any affect at all (we have since moved up to 3mL once a day - but she started getting irritable and her seizure count went down 3 days before the dose increase. And he totally leaves out that she is obviously in pain. Something is very much obviously hurting/bothering her.

Based on the last 2 days of her becoming a little more relaxed (and almost happy) at points throughout the day and we still haven't seen a seizure (or a tooth), here is my new theory:

I haven't ruled out teething completely, but I've put it on the back-burner because 1. I have no idea what to even look for, 2. I have seen no teeth, 3. tylenol/ibuprofen is hit or miss. Dr. Larsen did feel around her mouth yesterday and confirm there may be a tooth coming in on the top - which also would be a little AbiNormal, because typically it's the bottom teeth that come in first. I am also very much wishful thinking that the Potiga is indeed affecting her seizure control already. I mean, seriously, how cool would it be if only 15mg (3mL) of Potiga once a day completely controls her seizures, and that is all we need! I do not agree that it's the lack of seizures that's making her irritable, although, I do agree that there were times they seemed to be a sort of release for her....but not all the time, so IDK..I am still certain that her irritability is playing a part in her seizure control, but it is odd that it has been so long and even though there are moment of calm and content and alert there has still been no seizures. I still think she got an ear infection while coming down from a sickness and maybe that was causing quite a bit of discomfort, which caused the irritability. Then we started the Amox and caused more discomfort and continued irritability. I also think I expected immediate results from the Amox. (or at least hoped for them). I think now we just don't change anything (even though her increase in Potiga is due in 2 days, I want to keep it here, finish out the Amox. prescription, continue her probiotics (which we just started last night) and see if she continues to relax any more within the next couple of days. I have to remember it hasn't even been a week since we found the ear infection and started the Amox.

I also kinda worry that the Gabapentin may have been playing a role in her ability to relax afterall, as it was initially prescribed to her for neuro-irritability. I really don't think it was helping and the epileptologist agrees, but because I'm in the middle of it I can't help but think "what if". So for right now what my next step to do is just continue what we are doing - not changing anything else. Finish out the Amox. while continuing to give her Probiotics everyday to help soothe that potential irritation. We got her off the iron so hopefully that will help with some tummy issues. Not increase the Potiga yet, even though the increase is due (I haven't talked to her doctors about that yet, but they are pretty good at going with my ideas if they seem to be logical and don't seem to be too dangerous). IF after her Amox. is all gone, the probiotics and lack of iron don't show to have any affect, and there are still no signs of any teeth within the next week and a half THEN I will look into trying Gabapentin again. She was on such a small dose and it wouldn't hurt at all to try again, but I feel like there are just SO MANY other things going on right now that we just need to stop changing stuff, give her little body another week or two to sort out all the different everythings that are going into and then see what happens from there. On top of all of that, she just got 3 of her 5 1yr old immunizations yesterday. So there's something else.

See what I mean? I have NO idea what the root of her irritability is or how to fix it..and there are so many things it could possibly be. I don't know if she is not having seizures because she's so pissed or because the new Potiga is really helping.. I'm at a loss this time and I don't like it! I just have to sit back and wait, see what happens. And for me that is truly not a problem, but when it affects other people, like her babysitter, and starts stressing them out then I feel bad and feel like I need to do something now...but I just don't know what!

So, Overall Abi had a wonderful Christmas break, but since the end of Christmas break (which seems like an eternity ago, but really wasn't even a week) she has been incredibly pissed.
We started Potiga (12/27)
4 days later she started not feeling well (12/31)
Next day was pretty irritable and her seizure count dropped (1/1)
Abi Only had 1 seizure all day (1/2)
 figured out she may have an ear infection (caused by teething? who knows) (1/2)
Got her started on Amoxicillin (1/2)
noticed a softening in her stool (1/3)
she got even more mad and stopped having seizures all together (1/3)
Full on Diarrhea and gassy (1/4)
Very irritable and uncomfortable (1/4-1/5)
Started calming down - had a better day for Shiree (1/6)
Another better day for babysitter (1/7)
Immunizations and doctor visit (1/7)
Stopped giving her Iron and started Probiotics (1/7)
Abi had another hard day for Shiree, but then I brought her home and she calmed down--for a little, but started getting fussy again. Took a [not very solid] nap but then ate about 9oz and was calm and almost playful for a good 1.5-2 hrs before getting fussy again- fell back asleep around 8:30 (1/8)

I just want things to calm down so we can see what's working and what's not. What's causing what and how to fix it. Poor thing is just so uncomfortable right now.

I also want you to know that I DID NOT intend this post to be as long as it is. I even re-wrote it to try to shorten it because the last one had a back story all the way from Dec 27 when we started Potiga to today--I was about halfway there and realized it was WAY overwhelming and changed it---still pretty overwhelming, but i'm done typing for now. Maybe I'll go back and proofread later, but for now what you see is what you get.

I'm very happy to see the glimpses of calm Abi during the day - it gives me hope that we are on the down-slope of whatever this was and there's a light at the end of the tunnel. I just feel so bad that she is so hard for Shiree, I really don't want to overwhelm other people with my AbiNormal. She's not overwhelming to me, but she's mine - and she seems to be most calm with me so it truly is much harder on other people and I just feel so badly!

Anywho - I'm at a loss of what to think -
This is AbiNormal!