It's Good to be Wrong

Over the past several days Vada has had questionable movements again. It sounds weird to say that, let alone put into words, but when you have dealt with seizures maybe it gives you a whole new perspective on the way your child moves, acts and behaves. The movements have been comparable to what we were seeing when she was having seizures.

I have been corresponding through emails and over the phone with Vada's neurologist throughout this time and over all he was on the same page. I had sent him several emailed videos and with each one he commented on how it looked as if she were having a different kind of seizure(other than the Infantile Spasms).

The last time I sent him video's he called with in a few hours offering me two options. The first choice was to start her on the Sabril right away, (a medication that I have a months worth of on hand). The second option was to do an VEEG also known as a Video EEG Monitoring Test. I jumped at that idea. The last VEEG was one that lasted for four straight days. It was done at the beginning of Vada's seizures, nearly four months ago.

While I still believe firmly in not treating the EEG but treating the child/symptoms, I needed to see what was going on. My mind wasn't made up and I was confused at what I was seeing. By having this VEEG I was hoping for some direction. If the video showed her to be having seizures, then we would treat her for them, but I didn't want to start yet another semi-risky medication for no reason if she was not having seizures.

During the initial preparations I was given a button to push and a log sheet (just like last time). Everything that we had been seeing and everything that we had been questioning would be seen on the video as well as on the scan. The doctors would be able to target the "episodes" by the moments on video and from when I pushed the button.

The test went well. Vada had every "episode" that we had previously questioned and not one single movement showed up to be a seizure! This was great news. Overwhelmingly great news. However, I am not one to leave "well enough" alone, (or is it "good enough"...? Ugh..., I need to go back to school!). On Monday I am taking Vada to her GI specialist and requesting that further testing be done.

(This picture was from September 2010 when Vada first started to have seizures. You can see that there are "rest" periods between the "peeks". The rest period's show Vada's normal brain activity. The peeks are what happens when you have what is called hypsarrhythmia. Hypsarrhythmia is something commonly seen with her type of Epilepsy.)

(This picture was from the January 2011 VEEG. No peeks. No hypasarrhythmia!!! The Neurologist said that her brain activity is slower than a typical child, but that slower activity is commonly seen in people who have Down syndrome.)


One new piece of information that we discovered during this last OSF stay was that Vada's has leukopenia. Which means that her White blood count (WBC) is low. Her levels should be over 1000 and right now it is in the low 600's. I'm sure most of you know, but for those who don't, your white blood cells are what helps your body fight off infections. The cause of her low WBC is probably being cause by the Valporic Acid that she is taking to help control the seizures. Since the Valporic Acid is working at maintaining a seizure free Vada we all agree that we would like to attempt to keep her on it. So we have started to give her Levocarnatine, which is known to help raise and maintain the WBC.

Vada will have to have her blood continuously checked to make sure that her levels are where they need to be. If the Levocarnitine does not help then we will have to look at putting Vada on a different Anticonvulsant. For now, were going to keep a positive mind set and pray that the Levocarnitine does the trick!

A Different Kind of Seizure?

Over the past week Justin and I have been noticing new physical movements from Vada. Some of them seem to be typical for her. She seems to enjoy smacking her lips together and for the most part when she does this it seems to be somewhat voluntary. We have also noticed her eyes are doing some rolling and she has displayed some odd head movements. There has been two occasions (that I can remember) where she looked liked she had "jack knifed", once Justin was the one to first notice the movements. I hate feeling like I am the only one dealing with this and seeing this. I am constantly in conversations that make me feel as if the other person thinks that I am over reacting. Maybe I am or maybe I am just defensive but when Justin is right there next to me, witnessing the same thing that I am, I just feel more self assured.

The nights are becoming somewhat of an issue again. If I am remembering correctly I posted something around a month ago in more detail about the nights seeming to be the worst for Vada. I personally think that is because of the distinct difference between napping and going to sleep for the night. Our bodies have eternal clock and it knows the difference between a short nap during the day and going to bed for several hours over the night (at least I think so). As often as I have seen Vada's body movements during the evening, it just makes so much sense to me. However, proving my theory is hard to do.

The past two days (yesterday and today) I have been video recording some of Vada's "episodes". Last night I emailed them to a friend who is extremely familiar with IS/Ws and I emailed them to Vada's Neurologist. My friend responded first. Dr. Jennings called later this afternoon. He said that he had watched the videos a few times and was concerned that she was having other seizures besides the Infantile Spasms/ West syndrome. He thought that she may be having Atonic seizures. He was also concerned with her lip smacking, which tends to be a common physical symptom of several different types of seizures. He too had noticed her eye movement and that made him uneasy.

We have the Sabril (vigabatrin) here at the house just in case the IS came back, but if its not IS then there are other medications that can treat the seizures. Ones that are potentially safer to use than the Sabril. Therefore, he wants to do an EEG and the quickest way to get one done is to admit her to the hospital. So this Monday after I drop the girls off at school V and and I will be taking another trip to Peoria to see Dr. Jennings and have that EEG done. I am assuming that I will know what were looking at before her and I leave the hospital.

I have added the videos that I sent to the doctor to my blog page What Vada's Seizures Look Like if you are interested in seeing what were seeing. You can also find more on my Youtube page. Keep in mind that the movements are hard to detect, they are subtle things that you wouldn't think much of, unless you knew what you were watching for and to be completely honest, we're not for sure if we are actually seeing seizure but it seems as if we are.

Ill just throw this out there for any parents who may have experience with GERD or similar issues. If you watch the newer videos that I posted look at how she is swallowing and the sounds she is making when she does it. She does not have a problem with spitting up so it probably is not GERD, but could it be another issue pertaining to her throat? Any ideas are welcome. I know that children who have Down syndrome have a higher risk (vs. children who do not have Ds) of all kinds of medical issues so maybe this is one of them and not seizure related...?

What If...?

Do you ever ask yourself "what if"?

What if I I left ten minutes earlier..

What if I hadn't raised my voice...

What if.., I were wrong..?

Justin and I have been going back and forth with all kinds of "what if's" this past week and a half, more so over this past weekend. In my experience the what if game has never been enjoyable. It usually holds some amount of regret and blame. This time it holds those same feelings and more.

On Friday and Saturday night Vada kept me up pretty much all night. There were moments where she would settle into sleep and I would too. For any parent who has had a late night with your little one then you know how those moments of rest (while possibly being hours), sometimes feel only like minutes.

Out of denial and my own tiredness I didn't keep a log of the times Vada kept waking up, or how long her seizures had lasted. Instead, I laid next to her in an almost delirious and worn fashion and in my horror I watched her new movements and I listened to her new sounds. All along praying silently that they would just go away.

I woke Justin up several times telling him to watch what she was doing. Or to listen to her. Her movements were ones that made her look as if she were very uncomfortable and cranky.

Vada sleeps primarily with us. Primarily with me on "my" side of the bed. She likes to lay on her side and bury her face into me or she likes to lay on her back "snow angel" form and take up the bed. I have really been self disciplined about putting her into her pack and play before bringing her to our bed lately. Typically she sleeps in it for at least two hours before waking up and joining us. Friday and Saturday were no different as far as that routine goes.

Friday night while only two days ago is hard for me to remember in great details. So much has happened since then that I cant focus on certain moments of that night. I remember that Vada woke up around 1 a.m. and that I was laying on my side with her and she was nursing. I remember that she pulled off suddenly and seemed to be uncomfortable and then after a moment she would latch back on. She did this several times. Each time the arm that was left exposed would go from holding me to flat on the bed behind her. After several times of doing this she then began moaning and rolling her head from side to side. I woke Justin up to take a look a couple of times. I also remember throughout the night being incredibly uncomfortable. I was laying straight, (soldier like) while Vada took up half of the side of the bed. I was trying not to touch her because I was afraid that for some reason I was making her uncomfortable. I had tried to put her back into the pack and play, but that didn't work. So I gave her the space she seemed to need and with every sound and movement I laid awake and watched.

Saturday holds pretty much the same story. Only Saturday seemed to be more intense. I don't know if the lack of sleep on my part that made it seem that way or if it truly was getting worse. Justin said it was worse than the night before but this too was his second night of me waking him up several times in a row. Which I might add doesn't typically ever happen. Usually, I leave him be at night. These past two nights were different, I needed his eyes, his opinion and I think..., I needed his ability to always see the good in things. I think for me denial was setting in and knew his positiveness would either make or break me in this situation.

He would watch with intensiveness as I repeated the same questions over and over again..., "What do you think? That's not right.., right? Do you think its a seizure?" The answers were always the same however, no matter how I tried to reword the questions.

Saturday led to Sunday and that night in itself seemed to last forever. I called the Neurologists office around 3 .m. but it turns out that the crude female doctor that I refuse to let treat Vada was the one on call.

I have Vada's primary Neurologists cell phone number, but I didn't want to call at that time because reality was already sitting in. If what we were seeing was a relapse of seizures, there was nothing he could do at that time, so why call and wake him and possibly upset him. I decided to go lay back down with Vada and wait until morning.

At 9 a.m. I called Vada's neurologist on his cell. I am so glad that he is her doctor. I can understand him, he is pleasant, seems to really care and he listens to me. Having him treating Vada is a reassurance. I told him how Friday and Saturday had gone. How the nights never seemed to let up for her, how she didn't seem to get a break from her "seizures". How her movements seemed different than the seizures she was having before, but that I was still concerned that she was having seizures. I told him how I really didn't notice anything throughout the day even though she was sleeping a lot during them and that it seemed to only be an issue in the evening. Which I might add, is odd.

He asked a few questions and then instructed me to give her a shot of ACTH. He said that we needed to stop the seizures now. Luckily we had almost a full vial left. At $29,000.00 a vial I couldn't bring myself to throw it away when Vada was finished with her treatment, so I just left it in the refrigerator. Good thing too.

He then said that on Monday he would begin the process of ordering the next form of action. A drug called vigabatin, known as Sabril in the U.S. Its the only other drug besides the ACTH known to be able to stop the form of Epilepsy that Vada has.

Having expressed my concerns and a plan of action already in the mix I felt a wave of relief and didn't second guess the ACTH injection, or the next step that we planned on taking with the Sabril. I thanked the doctor and hung up the phone.

During Vada's ACTH treatment I was constantly on the look out for seizures. I was aware that the ACTH may not stop them and I was determined to catch them if that happened. Looking back now, there were times where I had questioned movements that she made but brushed them off as if it were simply movements on her part. Now, I cant help but wonder if I did in fact witness a weakened form of a seizure. Even with the knowledge that she could relapse, I never wanted to admit that it was actually possible for her to go through it. Admitting that something out of your control is happening is a hard thing to do.

With one weight lifted and another set in place I went to the refrigerator and took out the ACTH and begun a ritual I was all to familiar with. I described to Justin what Dr. J had said and what we were to do. I think at that point we were numb and that to a certain degree we were also in shock.
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Today was the first opportunity that Justin and I have had in a very long time where we both could go to church together. Lately we have gone every other week, when he is off from working. He would go to the first service while I stayed home with Vada and then we would switch "shifts" and I would go to the second service alone. Our original plan was to have Justin's mom come stay with Vada so we could go together. I was torn in this decision because I didn't ant to leave Vada, especially not if she were relapsing but I also wanted to go to church, with my husband.

Justin and I decided that the hour and a half that we would be gone wouldn't change the situation one bit. We needed this time together and to be with God. So we went to church.

It was hard seeing all of the faces of our friends, people who we have come to consider our extended family. Everyone of them has been so loving and supporting. Looking into their eyes when they asked about Vada, the little girl they barely knew but loved and telling them that we didn't think she was doing too well, was so hard. No one knows quite what to say, yet they all want to say so much. We love them and are grateful for them.

After the sermon the elders came to Justin and I and prayed over us. They prayed for us, for Vada and for our family in whole.

After leaving church the doubt began to settle in. I began questioning myself, what we saw the nights before and the things that we were telling people. What if we were wrong?!?

I couldn't let it go. I began asking Justin all kinds of questions. What had he actually seen those two nights. Did he really believe that we were seeing seizures again? With every one of his answers, I would disagree. Was this denial on my part? Its ironic that I would ask him these questions. When Vada first started having seizure, it was me that had to convince him that what we were seeing at the time was in fact seizures.

Justin said that he remembers with no doubt that Vada was having the "jack knifing" motions on Saturday. I remember her arm movements. Not her legs, not at all..., not even once. Was I too tired tired to notice what was really going on? The question is not who is right, but what is right because now, I am full of doubt and uncertainties.

The drug Sabril, our next option, if Vada has relapsed has a side effect that I am only willing to risk if I am certain that the seizures are back. Even if it is denial on my part (which is not my typical behavior) I need to be certain.

I plan on making some calls tomorrow. When Vada was on the Topamax she slept all of the time and barely nursed. She doesn't take a sippy or a bottle and I did attempt to give her both several different times, but I think she may have been dehydrated. I also think because of the lack of fluids she became constipated. Which could explain a lot. I gave her glycerin chips to help soften up and harden stool and she went a small amount, but you can tell that it was firm and that there is more in her that needs to come out.

I checked again in her mouth and I noticed a teeny-tiny white dot. When I rubbed over it the dot remained and the gum area is swollen, so I think its safe to say that she is teething. I know typically with teething that there is diarrhea, but if you don't have enough fluid, you don't get diarrhea. So I think both are a possibility.

I am hoping that Justin and I were too tired. I'm hoping that we over reacted and that what we are seeing is a number of things combined and not a relapse of Vada's seizures. I know it is a stretch, and I feel awful for worrying people over something that could be so basic as constipation and teething, but I hope that's what we did. I just cant acknowledge the seizure aspect of things yet. IF I see something that looks like the "head bobs" or the "jack knifing" that comes with the IS then I will acknowledge them, don't get me wrong. For now though, I have a plan on trying to rule out everything else before I sign a consent form to give Vada the Sabril. I think that it would be irresponsible if I didn't rule out everything else first.