UGH. So many seizures!

It's true - her seizure count in continuing to increase. But let's back track to past events I never got around to telling you about.

Recap - On august 19th we started weaning Abigail off of her Topamax and the very next day she had a seizure in the lab while getting blood drawn. She had 2 more seizures the following 2 days but then none again until labor day (I'm pretty sure-there may have been one or two in there somewhere). Either way, the seizures were staying at one a day and were not very consistent at all so we just continued weaning with no addition of any new medicine until we were sure what she was going to do once she was off of the Topamax completely. We gave her the last dose of Topamax on September 10th and starting September 11th she started having 2 seizures a day consistently - one in the morning and one in the evening. I gave this information to Abigail's neurologist and we started her on the new medicine "Trileptal" I have heard good reviews about this medicine working with little side effects (which side effects were the reason we had to take Abigail off of the Topamax in the first place). We started her with a very 'baby' dose on 9/20/13 but by this time her seizure count had increased to about 8-12 per day. The seizures had become much less severe in length. When she was only having 1 or 2 a day, they were lasting approx 4-5 minutes, now they are about 15-30 seconds..but they seem to wear her out the same amount as the longer ones. Also, there is absolutely no rhyme or reason to when she will go into these seizures. Some will start when she is crying inconsolably, others will start while she is completely calm. I have seen some start even when we are playing with her and one during the middle of a feeding..there is absolutely no telling when the seizure will occur. Since we've started her on her new medicine we have already increased the dose once but there is still no sign of the seizures slowing down...in fact they have become more frequent.
     I didn't do an exact count but Abigail had at least 25 seizures today (10/6/2013), if not more, and that was starting at 8:30 this morning - she had been having them at least every half hour throughout the whole night as well, and I didn't add those into my total for the day. Last night and today the length started to increase as well, then after her night time dose they started to get shorter again. There was a misunderstanding by her father last night as I left for a ThirtyOne bag party that I was hosting I told him she would be hungry when she woke up and would need her medicine around 7:30 pm and I had pulled-up all the medicine that she would need and sat it on top of the formula tin. I got home at around 8:30 and she was almost asleep in her chair with an empty bottle sitting nearby (she had just had another seizure, and that's why she was so sleepy). I wondered if he gave her her medicine but when he didn't say anything to me when I told Olivia (Abigail's sister) that she had already gotten her meds for the night, I figured he did and everything was fine and dandy. It wasn't until this morning when I went to pull up her morning doses that I saw the medicine still sitting in the syringes! I can't believe he didn't give her her medicine! I'm positive that is why the number increased so excessively and why they were becoming longer! Seizure medicines aren't something you can just skip a dose and it has no effect - actually it is just the opposite! If you were to cut seizure medicines "cold turkey" it will make the seizures worse and more damaging. He explained his line of thinking that "I don't usually give her her medicine until after Olivia goes to bed so surely he wasn't supposed to give it then" - but that's not even true because Liv is always there helping me give Abigail her medicine. Some nights she doesn't get it until later - but most of the time its between 7:30 and 8:30. I just wish I had double checked if her medicine had been given-but I honestly did not want him thinking I didn't trust him or didn't think he was capable of doing what I asked - so when I didn't see the syringes on top of the formula tin, and he didn't say anything about not giving her her medicine I let it go. Last time I trust him to give her meds! Or at least do it without checking to be sure she got them. I just feel so guilty. The dose wasn't working anyway- but you still can't just skip it!                
           Tomorrow I will call the neurologist and let him know she missed a dose but she wasn't responding to it before that and I was going to call about increasing the dose yet again. The last time I talked to him he increased to dose of 2 medicines and said that if we didn't see any change with that then we would start being more aggressive with the increase in the new trileptal medicine. I have learned though that Trileptal is one of those medicines that the body builds up a tolerance to and we will need to continue to increase the dose the longer she is on it..ugh - I didn't love hearing that. There is another medicine that I learned about today called Potiga that I want to ask about. I just hope it starts to work soon because these seizures are killing all the progress we've made the last few months. She doesn't smile or coo anymore at all. No more stories. She has no desire to even pretend to try to hold her head up and she's just so lethargic all the time. She hasn't cried at all because she's just too tired! She doesn't suck on her hands or anything like that anymore. Not following anything - she's either laying there completely zoned out or asleep because she just had a seizure. She still smirks after some of her seizures as I think they are kind of like a release for her and afterwards it feels better. She is continuing to grow and gain weight too, so that's good. I just really hope and pray that once these seizures get under control again she will pick right back up from where we left off.  She is still responding to touch and sound for the most part so I know she's not completely gone- just too dang exhausted to do anything else! Sometimes I can't even tell if she's really awake or asleep - her eyes are open, but all other signs point to sleeping. I hate it actually. Before I was tolerating it, but now I'm really done with it. I just want my baby back.

     Here's a story that doesn't have much to do with what I was talking about before, but something I've been meaning to write about for a long time. So back in September, on the 18th, I went for a visit to Dr. Larsen just to give him a heads up of what's been happening with her and the medicine change (this was before we started the trileptal but were about to). He decided that it would be best to take a blood test to run her numbers and see where she was in case there was something off due to the change in medicine-just to make sure we are back at baseline. Abigail and I went over to the lab and got the lab work done - but it wasn't without trial. The phlebotomist tried to take the blood from Abigail's arm, but Abi has become a very hard stick - so instead of sticking her again and making her really mad the lab phlebotomist decided to take blood from the heel. I asked if this was going to give them a hemolyzed sample since every time we did it in Vegas it skewed the results and they had to come back and poke her again anyway, the tech assured me that if the blood was flowing well then the chances of that happening were decreased. In her defense, she tried everything she could to avoid a hemolyzed sample - she stuck a heat pack on her heel it so would get the blood flowing and held her heel in a way that would pool the blood to the area she wanted to poke so it would just come out. It seemed to flow pretty quickly and the tech wasn't concerned so Abigail and I left for home. We got home around 7:30pm and by 8 o'clock had received a call from her doctor that the results of the lab were troubling and he wanted to go get them again. Apparently her potassium levels were really really high and her bicarbonate levels were still low. He wanted me to GO BACK to St. George (2 hour drive) so we could redo the test through a venous sample because the sample we got from the heel was probably the reason for the skewed numbers-but he juts wanted to be sure. Apparently that high of potassium levels in her body could stop her heart-no one wants that. So Abigail and I traveled back to St. George to get the proper test. I told the phlebotomist that would happen if it went from the heel and it did..now I know to put my foot down and say "no, it MUST come from her vein and if you can't do it send me a neonatal specialist that can". So [almost] needless to say, Abigail and I stayed in St. George for the night as we didn't even get out of the hospital (we ended up going into the E.R. because the pediatric floor in the hospital only had one nurse on staff) until a little after midnight. That is the first morning that Abigail woke herself up with a seizure..just a side observation.

     We went to Disneyland in California over the weekend of the 20th - 22nd. Abigail did pretty good for the most part. She was still having quite a few seizures so she slept a lot which is bittersweet. One day though she didn't want anything to do with that day. She was NOT having a good day so I took her back to the hotel room..she screamed for a good 2 hours before she finally had a seizure and went to sleep. Poor girl! I don't know what was bothering her so badly but I didn't like it one bit. Other than that day she really did do really good.

     We've started her on a new formula as well - we went back up to enfamil/enfagrow gentlease (we use them interchangeably-she seems to tolerate the enfagrow more, bu that could just have been a fluke observation) we have to give her miralax every night/day as she is super constipated with the iron supplement we give her, and when she gets the miralax she seems to be okay- but I can't help but wonder if the formula change isn't part of the whole problem over all. If maybe she is having tummy troubles more than I realize which is part of the cause of some of her seizures. I figure we should get the seizures under control and see how she bounces back before I worry about that. We made this formula change back closer to when we were just taking her off the topamax so the chances this has something to do with it is slim, I just want to find a cause or a reason so badly to stop it all. Figure out what's causing all this grief so I can cut it off at the source!

     So right now we are just in the middle of the waiting game..but it's been almost a month since her seizures have started acting up again and I'm very ready to get things back to where they were before. I'm so mad the topamax had such a bad side effect because everything was working so well and she was progressing - she just wasn't growing. BUT! some things I have noticed that could be okay is that her vertigo spells-I'm pretty sure I told you about those things she did when she was on her back where she would look incredibly scared and scream bloody murder until you pulled her arms back into her side? It looked a lot like startle reflex, but much more severe and would last sometimes as long as you would allow it before you pulled her back into safety. The longest I ever let her go was 30 seconds for the sake of a video to show her neurologist. He said they were most likely not seizures because they were situational (only happened when she was on her back) and him and her pediatrician agreed it was most likely vertigo caused by coming off of the Topamax. Anyway, she hasn't had a vertigo spell in a long time, she hasn't had a blue, or breath holding spell since I can remember, and her nystagmus seems to be less severe overall - haven't seen that in a while either! I don't know if any or all of these things were side effects to the topamax (signs point to yes), or maybe the RTA (renal tube acidosis) that the topamax was giving her (the lack of growth definitely was from her RTA) or if her seizure activity increase is just keeping her too tired to do any of that - but like I said, most evidence points to side effects from the topamax...So it was definitely a good thing to take her off of it, but I just want this other one to start kicking in RIGHT NOW!

     One last thing then I'll let you go, for real. My sister found this wonderful organization called Jack's Army found at jacksarmy.org. It is a family who's son has the same condition Abigail has, but he is now 3 or 4 and they have a foundation - the Jack Pribaz Foundation - that supports research to find a cure for this anomaly of a disorder..It also has a lot of really good information about the KCNQ2 mutation and Jack's story of his battle with diagnosis this disorder. Its a great site and I urge you to go take a look at it..if nothing more than to just learn a little bit more.

     Thanks for reading guys-I'm truly sorry I have been so lacking in keeping up with 'the happs' of Abigail. I hope I have more good news to share with you next time! For now we will just be taking it all one day at a time - the good with the bad! Overall, things are good on our end - just a few hiccups to work through, but we will!

This is AbiNormal.