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.

Seizure Update

A few days ago V and I took another trip to the St. Louis Children's Hospital/Washington University to meet with her neurologists/epitologist. It had been around six months since our last seizure scare and visit to the doc's but this trip wasn't due to any scare, luckily, this visit was just a check up. In fact,  I had no concerns what so ever. It was nice!

There's not much to say really, which is a great thing to finally be able to say! Vada's last known and proven seizure was around the time she started the ACTH injections, which was around a year and a half ago. Since that time there have been many questionable moments, movements, and behaviors but thus far we(I) have been wrong and her seizures have been controlled. Again, another great thing to be able to say!

What this all means is that this coming August/September of 2012, will be her Vada's two year anniversary of being seizure free! A monumental moment to celebrate! It also means tapering time, something else to celebrate but also something that has a dropped another heavy anchor into the very pit of my stomach-- even my heart is bogged down with overwhelming concerns. I keep telling myself that this too is progress and progress, no matter how difficult to endure, is good.

Currently, Vada is on three medications to help keep her seizures under control. She is on Levetiracetam (Keppra), Valporic Acid and L-Carnitine (to offset ill side effects caused by the Valporic Acid. The first step is to taper or wean her off of the Keppa and both of her doctors agree that it is time. However, they both said that if i'm not ready then we can wait. I used the inallagy of a child not wanting to have a bandage removed because they know that it may hurt, therefore, usually, its done quickly.  I then told Vada's doctors that I will never be fully ready to take this chance (I am just fine being in this comfort zone--thank you very much!), so like the bandage situation we just have to do it. Quickly, however, is not how her weaning will be done. I have been given a schedule that will slowly, over ten weeks, take her off of the Keppra.

After those ten weeks Vada will remain on the other two medications until we return for another check up in or around July 2012. If everything goes well, we will then begin to wean the remaining anti-seizure medications and by Aug./Sept. (her two year anniversary of being seizure free), she could be completely off of all seizure associated medications!

I have to keep telling myself, "one day at a time" and "slow and steady" but things are going beyond well. I pray that they continue to be so. Our lives have settled down considerably and things feel "normal". Its been nice. I don't want to go back to where we've been, I want us to keep moving forward but I guess even if we do have setbacks, that's exactly what we will do anyway..., move forward.

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.

Dealing

I've been asked quite a lot over this last week, how Vada is doing and in regards to her health how I am dealing.

It's been emotional, to say the least. I have kind of emotionally shut down. It's what I do when things become too hard to handle. I feel kind of like a robot.  I don't necessarily like it but it's something that I have done since I was a child and kind of automatically sets in. Sometimes I wish that I could just cry it out and other times I am glad for this particular coping mechanism.  My feelings come out later, when the moment has passed and I can breath again or at night when I have a moment to myself to reflect.

I pray that this moment, this bump in the road, this set back does pass, unfortunately, thus far, it has not. Vada is still having seizures just not as many as she was having two weeks ago. I think that the increase in her medication has helped, somewhat but overall has failed it's purpose of controlling them. Justin and I were discussing things this morning and we both agreed that we never actually thought the increase would work. We had just hoped to be wrong.

I called Washington University in Saint Louis, where Vada's Neurologists are now located and I left them a message. Were waiting on a response.

I have a couple of thoughts on what may happen but wont know for certain until I have actually spoke with the doctor. They may increase her already prescribed medications again. They may give add a new medication(s) or they may request for us to come back to Saint Louis. Before leaving last week we were told if we couldn't get them under control then we would need to come back for a longer (24-72 hour) VEEG. We had only had a one hour EEG last time.

Ill update more when I have anything new to tell. Thanks for everyone who has checked in and sent their prayers. We appreciate it!

Plans of Treatment and Discharge

Vada's EEG came back pretty normal, slower than typical, but free of  Hypsarrhythmia,  a sub-clinical brain pattern that is often found in patients who have IS/Ws. Vada first couple EEGs, which were done almost a year ago, had the Hypsarrhythmia. The fact that her most recent EEG showed no Hypsarrhythmia is a good thing. It means she is free of the sub-clinical symptoms and now we have to treat the clinical or the physical signs of the seizures-- what we are seeing in the videos below.

Our plan is to increase the doses of her current maintenance medications. The concern that I had originally had with the DTaP being the cause of all of this has been addressed and I have been told that we can not directly blame the DTaP vaccine for the seizures reappearing. It is possible that the vaccine may have lowered her threshold to fight off the seizures but it is only a possibility. The type of seizures that Vada has, often times comes back or even changes into other forms of epilepsy and that is more of our reality. Either way, I can not dwell on the "what if's" and I refuse to be consumed in my guilt over the choice that I made to agree to vaccinate. While I didn't fully feel comfortable with this particular vaccine I did believe that I was doing what was in her best interest. I will continue to do what I think is right for my children-- like getting into it with a Resident doctor in the ED...oh, yes I did! (Don't mess with this mom or my intelligent posse who is feeding me with all of the correct information!)

We have to do some lab work in the morning, once it comes back we will change her doses and we should be released to go home. We will keep in direct contact with the Neurologist here and will continue to monitor Vada closely. Hopefully, this can be fixed. I am hopeful even though it does seem like we are grasping on this one.

I plan on taking a quick thirty minute detour to the Arch with Vada-- before heading out. Were not going to go in or up the arch, just walk around and take it all in. I cant bring her to St.L, for her very first time and not take her to the Arch. It would be wrong! Hopefully, we will be released when it is still light out!

I have thought a lot about Jacey, the little girl that I met while pregnant with V and her family. (This was the family that I wrote My Great Story about. Which btw, I have almost finished my rewrite of that story.) I would love to see them while we are here but I don't know when Vada will be released and I don't want to give short notice or put anyone on the spot. Since V is now transferred here for her Neurological treatment I know that there will be plenty of opportunities in the near future for us to get together again and I look forward to it!

Vada and I will be meeting up with another very special person tomorrow and I cant wait to tell you all about our visit but I will leave that for another post!!!...

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.

Weightless

Yesterday was the first day that someone has ever commented on how small  Vada is.

Usually, it's been people saying things like; "She sure gets enough milk.", "She's not lacking in the food department."and "Are you sure she weighs (insert weight amount here____) and not more?"

Maybe I am a little sensitive. I have come to terms that I probably am, actually, I have come to terms with a great deal of things over these last two years.

I think its safe to say that a lot of my sensitivity then (during the seizures), came from fear and stress of the situation that we as a family were in. Maybe my silence towards what others were saying was my way of accepting that they just didn't understand and had no idea that what we were going through, was tough.
 
When Vada was born she weighed 6lbs-8oz. She was so tiny but by far a giant when compared to all of the other babies who were in the NICU.

Vada only minutes after being born.

Vada's low muscle tone, sweet cheeks and marble of a chin made her seem a little fuller than she really was. However, once she was in our arms, she felt weightless.

I'd like to believe that in general, most people are good and would not intentionally say things to be hurtful. People made their comments about Vada's weight not realizing that I was putting my 7 month old baby in 18 month baby clothes because her head was so swollen from the steroids that she had to take to stop seizures and not because of the abundance of milk she was drinking.

People didn't realize that their comments actually stung more at this point in her life than they did when she was born.  It was on a rare occasion that I would comment on other peoples remarks. There were so many that sometimes it just seemed like an endless battle.

I once read a post from another mother who had gone through the same battle with seizures, steroids and weight gain. She had commented on how there were times where she would throw shocking comments back to those who made rude remarks. Mainly out of pain and in her own words, she would say how these thoughtless people were making fun of a very sick baby. I too have lashed out in such a way on several occasions but it never made me feel better. I didn't like the look of guilt that I saw from the stranger that I had just hurt and I certainly didn't appreciate the pity that came afterward. Eventually, I just smiled because I knew that they didn't know and really what did it matter?

Vada's 1st Halloween ~ 11 Months old

Around 10 months old, Vada was just a couple of ounces off from being twenty pounds and she was only 25 inches long. Looking back at these pictures I don't remember seeing her this way. I knew she had gained, I knew she was swollen but I was with her all of the time. This was a gradual thing and truthfully, her weight was the least of my worries.

Today, the exterminator came. (If we don't spray we get Earwigs and Centipedes and I am scared shitless crapless of bugs that are inside of my house.)  Anyway, he was a new guy and had only been to our house on one other occasion. I was just laying Vada down on the living room floor to play as he was walking in through the front door. He took one look at her and said "Oh, you've got a new one." Justin had begun to walk him through the house and he replied to the exterminator with her actual age, almost fourteen months. The "bug man" stated how little she was and Justin agreed.

I was still in the living room as they were walking away, but I heard the short conversation and to hear someone finally say something other than her being "fat" warmed me up inside. I think babies should have good healthy rolls, but when it's all you hear about it begins to become offensive.

I don't know if this guy had children of his own, but lets face it men are not always the best judges when it comes to babies ages in comparison to their actual size. Vada is a pretty average size now, at least I think so. She is 17 pounds (give or take a few ounces) and she is right around 27 inches. She is wearing 12 month clothes and even some of those 18 month outfits/shirts that she was in months ago now fit her correctly.

The day before her 1st birthday.

She has her face back and doesn't look so uncomfortable anymore. She still has some baby rolls, which I think are fabulous and she still loves her milk, but now she is just more the size that she should have been. I am so grateful to be past that time. I pray everyday, sometimes several times a day, that we don't have to go through that again and I thank God for Vada's good health in the area of seizures.

Vada  on Easter of 2011

Ive learned a couple of things about the words we (the world in general) allow ourselves to say. In reference to babies I never refer to the baby as an 'he' or a 'she' if I am uncertain. I once had a elderly woman tell me that Jasmine, who at the time was in a pink dress, was a cute boy. I wont make the same mistake. Instead I ask the baby's name or I keep quiet until I know for sure. I never say a baby is cute if in my opinion he or she is not, because not all babies are cute and I don't say how something else on the baby is cute to deflect what I am really thinking. Mainly because I have had to endure quite a lot of that and you can tell that the person is searching for something to compliment on. Lastly, I never comment on a baby's weight. Too small or too big, you never know what the reasoning behind the situation and you never fully know what a person is going through.

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.

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!