Seizure Free

In August of 2010 Vada began having a rare form of epilepsy called West syndrome or Infantile Spasms.

AUGUST 16, 2010



AUGUST 17 2010

The seizures not only took over my sweet baby girl but they also consumed our family. For eleven weeks I gave my daughter daily injections of a toxic drug that in return stopped her seizures and for the last two year and two months she has been on daily doses of three different medications to maintain her seizure free "state of mind". (Its just been in the last couple of months that we were able to drop one of the three medicines.)

Tomorrow, Vada and I will be headed to SLCH to meet with her neurological doctors to discuss dropping (weaning her off) the final two medications and transferring her care back to Peoria.

I am both excited and sicktomystomach about this trip.  I love this little girl so much and I never want her to have to go through anything that she has already gone through medically but especially with the seizures, again. I don't want them to come back and part of me wants her to remain on these last two medications until she is five, an age that is considered to be a safer time to not have the seizures reappear.

 And yet, another part of me is wondering what she will be like off of the medications.  I wonder if maybe she will sleep better or even talk more.

I just wonder. 

During the last visit to St.L we were told to expect, if Vada remained seizure free over this period of time, that she would in fact be taken her off of her final two seizure medications. So I guess were about to find out what, if any, side effects she has been having while on them and what she is like off of them. Its crazy to think she might change a little and that the medications have somehow changed who she is really is suppose to be because of side effects. Truthfully, she is a strong little girl and I think that she has beat this.

But I do have a favor to ask, pass this along, ask for prayers and also pray for Vada, not just for this trip and appointment but for these next several months where she may be more susceptible to having seizures again. Ask God that it may be His will that she is finished with medical issues and that this can be the beginning of her enjoying her life as a healthy little girl. 

Thank you.

A Late Night Call

I just got off of the phone with Vada's new Neurologist, Dr. McGill. Yes, he did call me at nine in the evening and you know what, God bless him for doing so! I am so appreciative that he called later verses making me wait until tomorrow.

We talked about what I was still seeing and about a video that got passed along to him and the head of Neurology Dr. Zempel (thanks Amy). We all agree that it all looks like Ws/IS seizures. There is a possibility that we are looking at a different type of seizure but the understanding is that it seems to be seizures and not behavioral, which was a slight concern or wonder of ours.

The plan is to increase her Valporic Acid (Depakote) slightly, I guess its already pretty high so they dont want to increase it much more until her blood levels have been established. Over this next week I will monitor her, write down what I see and when I see it and then next week I will have her labs done (here, in our town). Dr. McGill will call me with those results and we may or may not be able to play with the medications a bit more. Sometime with in the next couple of days the hospital will be calling me with a date for us to bring V back in to Saint Louis Children's where she will have another VEEG, that should be scheduled for a minimum of forty-eight hours.

Oh, and I finally received an answer on where her last Neurologist went. I had mentioned a couple of posts ago how we had received a letter from the office in Peoria, stating that her doctor, Dr. Jennings, would no longer be seeing patients and that Vada was being assigned to a new doctor. Well, Dr. Jennings took a teaching position. So, may the best come to him and his decision. I am sure that he will be a great teacher. I feel confident in the fact that Vada is being treated in the hospital and by the doctors she is meant to now see, so I truly wish Dr. Jenning's the best and I am grateful for who we now have treating our girl.

Seizures and Saint Louis

Im pretty tired right now, so this is my one attempt at an update. I'll fill in what I have left out a little later.

Vada had a DTaP vaccine on August 4, 2011 and I swear that night she began having seizures, again. However, at the time I took her "behavior" as she was having a sore thigh from the injection and maybe showing some irritability as well. I also thought that she quite possibly could be constipated--she has serious issues with being able to poop on a regular basis and we haven't got the Mira-Lax dosing tweaked just right-- yet. I can't say for certain that the DTaP caused the seizures because she had two DTaP vaccines, this last one being her third and the first two caused no concerns. This time is just very coincidental, if you want to call it that. Anyway, a couple of nights passed, she pooped (a lot) and still she was waking up screaming and crying. She would throw herself back and make circular motions with her whole upper body, which, by the way, were kind of frightening to watch. It wasn't until Thursday night when her jack knife motions reappeared or at least when I allowed myself to see them for what they were. Seizures. The next morning I told Justin how she had woke every hour or so, each time having fits. Together we decided that we would work together and try to record what was happening.

On Sunday Justin and I decided that I would take Vada to the Emergency Department of the Saint Louis Children's Hospital. Going through the ED would result in almost immediate treatment verses a possible wait due to office scheduling. The Children's hospital was rated number five out of the top fifty in the U.S. and since we no longer have our Peoria Neurologist this is where our hearts were telling us to go. Plus, the hospital and Neurology staff came highly recommended by people who have gone down this road and who have, in way or the other, came out on the other side.

So that's it. I'm really tired and writing seems like such a task right now but I wanted to post a update for those who were curious. Thank you to everyone who have sent messages to me, who have prayed for Vada and our family and a special thank you to Amy Armstrong, who continues to help me through this, even from afar.

I should know more soon, as in today and when I find something out ill post a update. As far as the videos go I have posted one that is edited, "My Movie" and the ones that follow have not been, they are longer and there is a great deal of time between the questionable seizures where nothing other than rocking, bouncing and or sleeping occurs. If your interested, I would say that the first two show the best of our concerns.

Feel free to ask any questions. I'll answer what I can and find out what I don't know.

Seventeen Months

Yesterday, I decided to put Vada into an outfit that I had purchased months ago. I was hoping that she had grown into it by now. When I bought this outfit and many more like it I had assumed that Vada would be in eighteen month sized clothes by the time summer would arrive. It was so hard to determine then because she had a huge weight gain with the ACTH and then the fact that she was, at the time of purchase, actually loosing weight.

On a side note, when I read about children who have Down syndrome, I read about the many things to expect. One specific thing that I read was that most infants and children who have Ds grow slower or are smaller than their peers who may be the same age and who do not have Ds. However, like every other possibility, it was just that, a possibility and since I hadn't had much experience with her actually being small (other than around her birth) I thought nothing more about what I had once read and bought the eighteen month sized clothes.

Clearly, I was wrong when I assumed I knew what her Summer size would be.

I am hoping for an prolonged Summer..., then maybe she might get some use out of a her "cool" clothes but I doubt it. Either way, I may save them for next ear, just in case. I kept a ton of her nicer clothes from this last winter, which was also sized for eighteen month old babies. Again, because of the ACTH, she was wearing eighteen month sized clothes, only she was nowhere close to being that age. I'm thinking that at the very least those will be perfect for this winter.

The first two pictures was taken on Christmas of 2010. Vada was 9-1/2 months old. The third picture was from this morning. The outfit is sized for a 18 month old and there is plenty more where this one came from. Some fit better than others. This one happens to fit her in practically the same was as when she began wearing it.

After we finally found some clothes that did fit her we headed to our friends house for a first time dress fitting. My friends mom is making our Vada and my friends daughter matching dresses and since she lives in another country, we have to send her the measurements of our girls.

Wasn't it thoughtful of me to stop her while facing the hot, hot sun, to take this picture? 

During our walk I did noticed something that got me really excited! Vada's feet can finally touch the pedals of her SmartTrike! So, she may be smaller in the waist area but she is, without any doubt, growing in length!

Later in the afternoon, Vada and I headed to her Ped's office for a check-up and more importantly, to start her Vaccination again.

These next few pictures are from my cell phone, so their not the best quality but look at how much fun she is having!

She didn't know or care about what was coming up, however. She was having too much fun playing on the exam table.

Vada may have been having a blast but I was sick to my stomach.

Knowing the right thing to do is not always easy and today's choice was a difficult one to make. I had actually put this appointment off by three weeks because I knew what vaccine everyone wanted to start with, the DTaP. For those of you who don't know, in the past this was an eliminated vaccine for those who had West Syndrome (or Infantile spasms/seizures). The Pertussis portion was once a "live vaccine" and it was linked to seizures. However, now that it is a "killed" strand or an inactivated toxin, it is considered to be safe to once again use on those who have Vada's form of Epilepsy. Regardless, it makes me nervous! Even today I am watching her like a hawk! Last night I even slept with her. She does seem to be having a difficult time too but I understand (having two children prior to her) that there are small reactions that sometimes occur but this is why I am watching her so closely.

She barely flinched while getting the shot, which was a nice reaction. She still has area's on her thigh's that looks almost scarred from where I gave her the daily injections and I think that maybe because it is scarred that she may have less feeling in those area's of her legs. Hopeful thinking?

Along with her vaccinations she was weighed and measured and low and behold she has grown. At the age of seventeen months (and two days) Vada is now twenty-eight inches long and weighs seventeen pounds and ten ounces.

When her doctor came into the room he jokingly said that if you looked at her growth chart you would think that she was withering away. He then followed that up with "But clearly that's not the case. She looks amazing!"

We think so too!

This is a Down syndrome specific growth chart. This is the chart that the doctors should be using if your child has Ds.

This is a Down syndrome specific growth chart. This is the chart that the doctors should be using if your child has Ds.

This growth chart is used for infants/toddlers who do not have Ds. I', sharing it with you to show you the difference in where Vada falls between the charts.

Sixty-Forty

Ive been avoiding this post since Friday. We've been asked several times since then about our visit to Peoria and I have repeated the story enough to now feel as if the news is a healing wound verses a fresh one. 

The lord has blessed Justin and I with the knowledge of our Sweet baby girls medical "issues" since before her birth. However, no matter how prepared we may have felt in the past or feel at this very moment, when we meet some of these issues head on we turn into frightened children, Or at least I do. When I feel like this I try to take comfort in my faith and my belief in Jesus Christ. In all aspects of my life but especially in moments like these I find God's love for me and all of his children comforting.

When I am breaking in all of the same areas that have been mended too many times to possibly withstand more tragedy, I try to tell myself to take comfort in knowing that God will not give me more than I can handle. It has actually become somewhat of a personal mantra of mine and at times a saying that I also resent.

Driving home on Friday I desperately needed a warm embrace. I try to remember that I am never alone and while driving with Vada in the back seat, how I could possibly feel alone is beside me, but I did. I was tired and trembling and every part of me ached from the knowledge that I would soon face another great fear.

Usually I am fine with the Peoria trips being just Vada and I. I actually almost enjoy that time alone. Its a time that I recollect myself and my thoughts. Today, however, I wished for the company of my husband. I spoke with my sister on the phone and I did appreciated the conversation but I wanted to feel Justin's hand in mine. I wanted to hear his smooth voice saying absolutely nothing yet somehow forming all of the perfect words that I needed to hear.

Sometimes I wonder if I am suppose to endure all of this alone so that I somehow find the person and the voice that I have lost through my depression. Or maybe I am suppose to be reaching out and by breaking through the walls that I have somehow created God is helping me find who I once was. Either way, on this trip home, I felt alone and lost.

On Friday we did end up doing an unscheduled ECHO. The XRAY that was done on Monday had shown Vada's heart to be enlarged and while examining Vada on Friday, Dr. Bramlett had heard more of a murmur than what he was used to and he felt that it would be the best idea to do further testing.

The ECHO showed differences in her heart from the last ECHO. As Dr. Bramlett was describing the changes he pulled out a heart chart that resembled the one below. He flipped it over onto the blank side and began drawling his version of Vada's heart. I have high lighted the areas verses scanning his drawing as it is easier to read this way.


Vada's Pulmonary Valve is still narrowing and has narrowed considerably compared to the ECHO done only a couple of months before this one. The Pulmonary Artery is leaking some, but due to the narrowing of the Valve it is a very minimal leak. The narrowing is actually a benefit to Vada's condition and it protects her lungs from becoming full of blood and causing other complications.

The red is showing the opening between the Right Atrium and the Left Atrium. Basically, there is no wall between the upper two chambers and there needs to be one. However, as scary as this may sound, it is a condition that many people live with their whole youth and into adulthood before ever needing any surgical repair done. The concern falls mostly at the bottom of Vada's heart, between the Right Ventricle and the Left Ventricle. This is shown in blue. The "hole" is very small. In fact it is so small that it is not really effecting her too much altogether. Dr. Bramlett says that her heart condition is what they consider a "perfect defect". If you had to choose between any heart condition, this would be it, because everything is working together to compensate for something that is not fulfilling its duties. One defect helps another and so on. The green is showing that the right ventricle is enlarged. More than likely by a over flow of fluid/blood into that chamber. If you look at this post there is a picture of the XRAY that was done this last Monday and you can tell that her heart is enlarged.




Sixty-forty. That's how the cardiologist is weighing his decision for surgery. Sixty being the greater and where he thinks she needs to have her heart repaired soon, as in this Spring. The forty is his side where waiting has its benefits as well. This Monday Dr. Bramlett and his team will meet with the pediatric cardiac surgeons and from this meeting we should have the answers on which route we will be taking.

Making the decision to proceed with the plans of heart surgery is a decision that is a very difficult to make. At this moment it is not actually being made on the basis of Vada's heart condition, as it is timing. Right now this is a window of opportunity. Vada has been seizure free for quite a while now. She has recovered, for the most part, from being on the ACTH steroid and her heart is now in a position where it could withstand an operation. At one point the cardiac team was saying that her heart was practically inoperable and from fear of the seizures returning the Doctors think that this is our moment to go in.

Its strange because I am terrified of Vada's seizures returning. Not because of what they look like but because of the damage that they and the medications can cause. She is doing so well. "Leaps and bounds" is what her physical therapist always says in reference to her achievements. I lost her for awhile during her seizure treatments. She stopped doing things and stopped smiling. I have her back now, and I don't want to give her up. I am afraid of what all of this may mean. If we do operate then the stress from the surgery could cause the seizures to return. I am being told that it is a strong possibility. If we wait then we may have shut the door on our only opportunity of repairing her heart because, once again, the seizures may return.

Dr. Bramlett said it very well when he told me that this may be a decision where if something happens down the road we may find ourselves wondering if we did in fact make the right decision. He said that this is a situation where questioning ourselves is not something that will help in any way. All we can do is make the decision that is what we believe to be in Vada's best interest and take comfort in the knowledge that we were doing what we thought to be right for her. As much as I don't want the surgery, I believe too, that this is her time.

Vada's Newest Heart Pictures and My Newest Fears

Today I took Vada to our local hospital for a chest XRAY. This up coming Friday we go back to Peoria to meet with the Cardiologist. As things stand right now we are only doing this XRAY. However, if her heart is in a questionable condition, then we will do a unscheduled ECHO.

This is the second time that I have held her XRAY in my hands. Last time I didn't look at the disk. I don't know why but I never thought to do so.  In fact at this moment, after reviewing this current XRAY, I am kicking my self for not looking at the last one when I had it in my possession. Actually, I am kind of kicking myself now, for looking at this one but that's me.

Truthfully, I am not one of those people who wait and think of only happy thoughts. I try to be, my husband is, for the most part and I think that his optimism is a testimony of his trust and faith in God, not that I don't share those same things. My upbringing was just different than his and it has caused me to see things and deal with things differently than him. My past has molded me into who I am today. I am an all or nothing, tell it to me straight and don't sugar coat it type of person. Rip off the damn bandage and screw the the raw patch of skin left behind from doing it. I would rather know what I am dealing with upfront no matter how severe, rather than figuring out the degree of a situation on my own.

My personality has brought problems in the past. I often worry myself too much and annoy others from doing so. Ill admit that sometimes knowing isn't always the greatest thing but I would still rather know than not. I cant help the way that I am, I mean, I control myself but as much as I hide my feelings and thoughts, I still feel and think them. I love Vada and I am scared to death of loosing her. I am scared of the prolonging of her heart repair and the surgery in general. I am terrified of her seizures and what they can do. I'm scared of the medications that we will have to use if the seizures do come back. This is all scary to me. Do I enjoy her any less because of my fears? Not a single fraction of a bit. I enjoy every moment with her. She is an amazing baby and I am proud and grateful to be her mother. I refuse to let my fears consume the time that I have with her or with anyone else in my life. I keep my eyes forward and I charge through each and every battle that arises because it is what I do. I am a fighter I always have been and I always will be and I know that Vada is too.

Wow, what a rant...
Anyway, lately, I have been a little (yes, a little) concerned and at the same time grateful for this up coming appointment. I haven't noticed anything different or even concerning in Vada except for one thing. I mentioned it on Sunday to my pastors wife and to one other person. Often people look at me as if I am a "worry wort" or irrational. It's possible that I am a bit of both but to avoid the comments and the looks that are often shared when I express myself, I have withheld these new concerns and maintained my composure. Now that I have looked at this XRAY, I am even more concerned than I was. Go figure.

Vada put me on alert about a week or so ago. I can not pinpoint the first moment, but several moments altogether do stick out. Vada laying on the floor playing, babbling, just waking up, after crying and in her car seat when doing nothing what so ever except for sitting. She has begun panting. At first I thought the seizures were back. Vada always had rapid breathing through her seizures. (Click here to see video's of Vada's seizures. The first are the most accurate. They were done before she started ACTH and are without doubt West syndrome/Infantile Spasms.) 

Over the past week I have pulled over twice to watch Vada during these odd breathing episodes and like I have mentioned, there have been plenty of them. However, not once has there been anything else attached to the breathing. No signs of seizures. No blue lips or discolored skin. Her temperament is always her normal laid back baby way and it doesn't seem to matter what she is doing, or not doing, when her breathing changes.It seems like she is just catching her breath from a long run and then once she has all is well.

I cant help but think that this is it, or the beginning of it.

 Isn't this amazing. This is my baby's heart. Her inner workings. Her life line. Its beautiful.

So anyway, I peaked at the XRAY. I couldn't save the pictures to my files so I did the next best thing, I took a picture of the picture and I've posted them above. In November of last year I posted a chest XRAY that was done during one of Vada's many inpatient stays at OSF, see here for that picture-it is all I have to compare this recent one to. Clearly, her heart is larger. I am no doctor, obviously.  I claim to only know what I have been told from specialists and what I have read myself. I don't claim to know a single thing about the pictures that I am sharing and until Friday I wont know anything more. These are just my thoughts and some more of my fears.

For those of you who are unfamiliar with Vada's heart condition she has ASD and VSD also known as or refereed to as Complete Endocardial Cushion Defect. She also has a leaking valve and an narrowing artery.

You know how at times you don't want to talk about a certain subject for fear of some how changing the out come? Well, I am hoping that from venting my fears once again, that I will have made myself look like a fool come this Friday. I know realistically however, its all in God's hands and I trust him.

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...?

Off the Fence

Its been around three weeks since Vada has been off of ACTH.


On the second day of not having an injections I saw "something". Luckily, Justin was right there next to me.


It was a very surreal moment for us both. I cant speak for Justin but I immediately tasted bile in my mouth. I knew what we saw the moment I saw it, but I didn't want to admit it. Facing fears, let alone one of my biggest fears was not something that I wanted to do that day.


I wasn't ready to say the word "seizures" let alone admit that my beautiful baby girl was having them again.
I wasn't ready to face the seizures. So, I began grasping for anything and everything that it could be besides seizures.


The type of seizures that Vada has (West syndrome also known as Infantile Spasms) can be difficult to diagnose because the movements from the seizures tend to look like the movements caused by Acid reflux or GERD. Even though the chance that it was Acid Reflux or GERD for Vada was slim to none, I had to rule it out before I was willing to start yet another risky medication.

Besides, if I hadnt ruled out all of the other possibilities then I would always wonder if I had made the right choice in starting this new medication. I guess, really that I just needed to hear that it wasn't GERD, even though in my heart I knew. I guess, it was just hopeful thinking.


About a week ago, I told Justin that I thought that originally we had seen Vada having seizures but that I thought that they were presenting themselves because she had a fever at the time.

More wishful thinking on my part.


These last couple of days have been full of odd movements and Vada's "suffering" has finally become apparent to me. I am no longer ""on the fence", I wont deny the seizures any longer.

They are back, they are stronger than before (in ways) and they are causing Vada to regress in areas that she was excelling in before.

Seizures are scary. Its something no one will fully understand until they themselves go through it, or have watched a loved one suffer from them. The damage caused by one single seizure can be devastatingly irreversible. Which makes them that much more frightening to deal with.


Treatment to stop the kind of seizures that Vada has is next to none. I am just as overwhelmed by the possible side effects from these medications as I am knowing that she is having seizures but allowing her to continue on having seizures is not an option I am willing to take.

Last night I spoke with Vada's neurologist and asked him if I could give her another injection of ACTH. The last time I gave her a single dose injection what we thought to be seizures, were stopped. Unfortunately, this injection did not do the same. At least not that I can tell.

I also emailed him some video's that I recorded of what I thought was Vada having seizures. He agreed that she was having cluster seizures again.


Tomorrow Vada had an appointment with her cardiologist. Which is still scheduled. After wards however, she will be seeing her neurologist and we will be filling out all of the paper work to get the approval for the new medication. I should have a good idea of what is to be expected by the end of tomorrow.


She is a strong girl. I cant believe how strong! Please continue to keep her in your prayers and I will continue to update as I find out what we will be doing.

Thank you.