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.

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!

Pro's at the Waiting Game

We have known that Vada has heart disease long before we even met her. Its was something that I came to terms with and had accepted very easily. What else could I do.

We were told before Vada was born different time frames in her life when to expect to have her heart repaired. The latest was next summer.

Next summer has come prematurely. Next summer is here. Or so we've been told.

We have been in and out of hospitals four times in the last month (counting our two trips to the ER in our home town). Each time for the same issues and each time we have been sent on home with her on a new medication, or a new dosage of an already existing prescription.

This latest trip to Peoria was a bit different than the ones before.

I called the Neurologist and then the cardiologist and I told them that Vada was struggling and that I was bringing her in. I asked that they call our ER to give them a heads up. Our ER doesn't treat Vada. They send her to Peoria. I figured if they got a call form a doctor from Peoria maybe the transition would be quicker.

After talking with the specialists I called Justin's mom and asked her to come over and sit with Vada while I packed us a bag and then take Jasmine to her house for the night.

I called Justin at work and explained what I was doing and why..., and he said that he was on his way home, he was driving us.

We had decided to cut out the middle man. It was a hard decision to make but either way there were risks involved.

We got to OSF safely and she was brought straight to a room, where after assessing her she was given oxygen. Other than our last stay and then when coming out of surgical procedures Vada has never needed assistance with her air intake and the only reason she was giving air the last time she was hospitalized was due to her being so upset.

(A quick side note for you parents who are in similar situations with heart issues... You do NOT give someone who has an unrepaired heart defect full air. I didn't know this until today. By giving full oxygen it opens up the lungs. With an unrepaired heart; opening up the lungs can lead to the lungs being "flooded" with fluid.)

After being brought up to the PICU from the ER we were given the much needed time our bodies were screaming for to rest a bit. Justin took the couch and Vada and I slept in the crib together.




Before this specific trip to the hospital we had an appointment with the Neurologist and the Cardiologist for this up coming Friday (the 12th; Justin's 30th Birthday) . Vada was due to have her ECHO then. However, since we are here now, they decided to go ahead and do it early. This is Vada's third ECHO since has been born and her sixth or seventh overall.

After Vada was born she had a ECHO done almost immediately. I was still recovering from the cesarean and had not had the opportunity to meet Vada let alone be there for the procedure. The second ECHO was done was a few months ago and I was so busy keeping Vada preoccupied that in return I was preoccupied as well. Today, I was able to really pay attention. The beating of her heart was beautiful. Watching the bird like flutters was like a piece of moving art. It was incredibly deceiving to watch. How could something so beautiful not only be so powerful, but also have something wrong with it?


Vada's heart issues has always held me in a cold place of fear. I look forward to hearing her heart beating with out the "machine gun" murmur. I look forward to not being so scared of all of the possibilities her heart defect brings but being able to eagerly anticipate the capabilities her heart has to offer. (does that make sense?)



Vada also had a chest Xray done. This was done to see if there was any fluid in her lungs as well as to see the size of her heart. Typically we go into a cold room that is separated from the part of the hospital that we are staying in and then Vada is placed in this upward seat that has these plastic wing like pieces that wrap around her whole body forcing her arms to be straight into the air. I'm sure its frightening for her to have to endure.

Today a lady came into our room hauling a huge red fire engine cart. It looked just like an actual truck. With a ladder and a real working bell the engine pulled up next to Vada's bed and just like that she was getting her chest Xray. The nurse laid the film under Vada then covered me up with a protective vest (I was laying in the crib with Vada at the time.) and just as quick as she entered she was gone.


The doctors covered all of their basis today when it came to doing tests on Vada's heart. Vada's last test was an EKG. It too was a simple test compared to past situations and Vada paid more attention to pulling on the cords that were attached to her than she did the person putting them on.

While I am grateful at how great the staff are here and how thorough the doctors are, I am a bit disappointed to say that I know nothing new except that there is some fluid in Vada's left lung. Anything above and beyond that is all one big assumption on my part.

The cardiologist that is on call this week didn't make it in to see Vada today. He made it into the room right down the hall from us however, but I have been informed that they had something going on until eight and that may have been the reason for his absence. Its hard for me to read into that. On one side it could mean that he is not overly concerned, which is a good thing. On another side, two weeks ago they discharged Vada after one night of observation so why are they keeping us for another night if there isn't something concerning them?

The nurse seems to think that we will "probably" be going home tomorrow and that we will be one of the cardiologists first stops. She also told me that the cardiologist usually make their rounds at 6:30 a.m. and that we should be seen by no later than 8:30 a.m. Hopefully what she says is correct and we have the answers we have been waiting for.

Well, it feels incredibly late right now, even though its only 9:30 p.m. I know many are wondering whats going on so instead of holding off on posting this I am going to go ahead and read through my mess of words tomorrow, and fix what doesn't make sense then. So please excuse any and all grammatical errors, I am sure that there are plenty of them..., there usually is.

Tonight I am grateful for an amazing God who created and then brought us Vada. I am grateful for the doctors and nurses who are helping take care of her and I am grateful for my family and friends who are saying prayers and lifting her up in her time of need. God is Good. He is faithful and he is here holding Vada in his arms, protecting her and giving her the strength that she needs. God has a plan for Vada and I believe that in his plan she will be with us for a very long time.

A Speedy Wean

Not a whole lot has changed since we have last seen Dr. Jennings. Vada has put on a good chunk of weight, which has us all a bit concerned. She is over nineteen pounds now and hasn't really grown in length. Currently she is wearing 6 to 9 months in pants but 12 to 18 months in tops because of her upper body and head size. Her weight gain is because of a few different reasons, but they for the most part, they lead back to the ACTH.

The first contributing factor is from what is called Cushing's Syndrome, not to be confused with Cushing's Disease. It is very apparent in her face, neck and abdomen. To control the CS Dr. Jennings is weaning Vada off of the ACTH quicker than planned, by one week. Her original day to be off was November 19th, now it's the 11th. There has been no signs of seizures since she was first placed onto ACTH so it seems like a safe thing to do.

Another side effect of ACTH or any steroid that I have ever been on, is being hungry all of the time. Vada wants to nurse ALL OF THE TIME, especially at night. During the days usually aren't too bad. She wants to nurse every two to four hours which is more common in a new born than at her age. She has however taken to solid foods and that also seems to subside her a bit. She wont take a bottle, which is fine, but I am trying to introduce a 'natural like' sippy cup to her, with water. Shes not too interested in that either, but on that, I will be persistent in constantly reintroducing it. By giving her water I am hoping to cut down on her calorie intake, but first she has to start drinking the water.

It's the night feedings that are the worst. Between the time she falls asleep (about midnight) and all of the times that she wakes up to nurse, her and I do not get much rest. There have been times when she has woke up seven times wanting only to nurse and nothing will calm her but nursing. Usually, its about five times though. Not letting her nurse is really not an option. When she wakes up she is in a decent mood. Tired and kind of out of it, but knowing what it is that she wants. If I try to hold her off from nursing she becomes agitated and her body movements become distorted and tightened, like she is very uncomfortable. It's not quite a tantrum like you may be thinking. It's hard to explain. It'll escalate until I do nurse her. I don't like attempting to hold her off for too long because then I become concerned with her heart issues. In my opinion she has enough stress on her heart as it is. Since the doctors know of her eating/nursing pattern and have never told me to stop what I am doing let alone change anything, I plan on continuing our nightly binge nursing sessions.

To help with her appetite we are trying the drug Topamax. If you follow my blog then this name will probably sound familiar to you. It is something that I brought up a couple of weeks ago. We were going to put her on it because she was having a hard time taking the Keppra. Actually, I was having a hard time getting her to take it. However, I figured out a way that works and we decided against the Topamax because the amount she would be taking would actually be more than if she just stayed on the Keppra. Now, however, the theory is that the Topamax has a side effect of making you sleepy and not hungry. It doesn't sound ideal when you are thinking of having a baby use it, but in our situation it sounds like the right choice. We have to wait until Monday for our pharmacy to get it in because Dr. Jenning's wants us to try the powered form that comes in capsules. He thinks by adding it to some solid food she may have an easier time ingesting it. One can only hope.

Other than the slight shift in medications nothing else was done today! Especially, no lab work! I did make it a point to ask Dr. Jennings again about when he thinks it would be okay to bring Vada back around friends, family and the general population again. Since Justin was with me I thought it would be a good thing for him to hear straight from the doctor.

On a side note..., in the beginning of all of this I had a friend who had already been through this situation with her daughter tell me about the isolation that would take place. I had my doubts in its extremeness, so because of my doubts I feel as if other may have the same ones. It does seem a bit crazy that Vada cant go to church with us or to family functions or even that we cant have anyone here at our house. A little too extreme, maybe. However, after educating myself on the situation, I will keep her away from everyone for as long as I am told to and I wont second guess it because I know how important it is for her health.

Having Justin hear it from Dr. Jennings kind of reaffirmed things for me. Since Justin had yet to meet Dr. Jennings let alone come to one of the neurologist apportionment's, I was nervous that he thought perhaps that I was over reacting..., you know, being overly protective.

Here's the deal, straight from Dr. Jenning's mouth "Not a good idea until after Easter".

Why Easter? Well, Vada has about three more weeks of the ACTH. Then she has to get it out of her immune system before her immune system can start building itself back up. Then, we have to go back to her four month vaccines and slowly start to get her "up to date".

Some of the vaccines she will never be able to get due to their history of breaking down the barrier for seizures or possibly causing them. Getting her "up to date" will obviously take time because there are several missed vaccines as well. Plus, she was already on a slower vaccine schedule due to her heart issues.

IF Vada were to catch a cold it is very possible that she would not be able to fight off whatever she caught and it could be fatal. Since we are now getting into the Winter and cold/flu season waiting until Spring is a safe plan for Vada.

So depending on the weather, how Vada is doing and how the rest of the family is feeling (because we get sick too) we are planning on bringing her back out into the public..., to church on Easter Day.

A New Diagnosis & Two Added Medications

For the last three weeks Vada and I have been taking a trip back to Peoria once a week to see her Neurologist, Dr. Jennings. Today was our third trip. Basically, we are just doing check ups and going back through every test that has been preformed from the previous visit.

Today's visit was scheduled for 11 a.m. Last weeks visit was as well, but it only took about an hour to be seen. Dr. J. doesn't make appointments for Friday's, he just see's patients on an emergency basis. Vada's situation is a bit different because of her treatment and he wants to see her once a week. He also wants a visiting nurse to come three times a week and for us to take Vada to her pediatrician once a week as well.

Before I get into how the visit went I have to say that I think Dr. J. is a great doctor. Soft spoken and seems to have a kind heart. His bedside qualities, I am learning, are hard to find in doctors, let alone specialists. Most specialists, in my short experience, seem to have a chip on their shoulder, or really big heads! Dr. Jennings is down to earth. People(his staff), refer to him as a skinnier short bearded version of Santa Clause. Its a close comparison. In situations like Vada's its nice to have a doctor that is willing to answer any and all of your questions, and he does just that.

It was almost 1 p.m. before Dr. J. finally made it to our room. Everything went smoothly,at least for the first few minutes. The conversation was light. He asked a hand full of his normal questions. "How's she doing? How are you doing? Have you noticed any seizure activity? And so on. He even brought me in a bag of food because we had been there for so long! His own personal stash of trail mix and veggie chips. That's my kind of food! Up until this point I was happy with how the visit was going. I thought I was about to be on my way out, which made me things eve better.

On a side note Jasmine started Karate a month ago. Tonight was her first promotions ceremony. She was going from the beginners white belt to the red belt. I have missed the majority of her classes and I really wanted to be there to cheer her on.

Instead, I was helping hold Vada down while she was stuck five, yes, count them...five times to obtain enough blood for eight vials of blood (they threw in an extra vial, just to be sure they got what they needed).

  This has also become a ritual Friday afternoon activity. Did I mention they had to do it five times? What about the fact that they went through her scull? Its a sad thing to watch, but I refuse to walk out of the room. I always have to help hold Vada. Usually i'm by her head so I can at the very least whisper into her ears, in hopes that my voice may calm her somewhat.

Anyway, things were (note the emphasis on "were") going smoothly, until Dr. J. received a phone call and had to step out for a minute... or thirty-two, but who's counting.

As he entered I noticed he had extra papers in his had. He sat down next to me and said. "I'm glad that everything is going so well, but here's what I am concerned with today." He shuffled through the papers in his hands and pointed down to a bold printed title. Methylmalonic Acid Deficiency. He began discussing levels and acids and then he brought up a name of one of his colleagues,Dr. Hoganson, who was from Chicago. He said that Dr.M would like to see us, but for now he would like to start treating Vada immediately. For what, I was still unclear about.

Turns out Vada has a high levels of Methylmalonic Acid and those levels are increasing. Actually, they seem to be doubling week by week, which is why we are doing weekly blood work. Dr. J. called it "organic" acidemia metabolic disorder. Organic, because we still need to diagnosis which type she is effected with.

Long story short. Dr. J. is out of his field on this one, his words not mine. He cant tell me if Vada will live through this. Its rare.Basically Vada's body is not processing certain acids. So on one side she is going with out them, on the other its building up a storage of toxic acids. Eventually those toxins can build up and "over flow" or over dose her. This can eventually cause her to slip into a coma then pass away. I'm not for sure on the time frames of any of it. I am assuming were okay for awhile because of the three week wait until we meet with Dr.H. from Chicago. Were starting a form treatment to see if it'll help, if it doesn't help it cant hurt.


We began treatment of daily intramuscular(IM) injections of cyanocobalamin, (vitamin B12). Over 90% of children with this deficiency respond to vitamin B12 injections. About 40% of children with this deficiency are helped by this treatment. We also started Levocarnitine orally. L-carnitine is a amino acid that your body producing naturally. Your requires it for energy metabolism and for proper use of fats. The bad thing with the L-carnitine is that a side effect can be seizures. However, if we were to not treat this new condition of Vada's it too could cause another type of seizure.

Our hopes are high, and our faith is even stronger. I don't know what God has in store for us. I'm not angry, but a I would be lying if I said I wasn't bitter. I silently curse the mom's, my friends, who complain about trivial things like their children having headaches, ear aches and runny noses. I have to stop myself before becoming too irritated. I try to remember that they haven't had to suffer with their child like this. Their complaints are significant to them as well, but I still just want to say "Really.. a head ache? How tragic." I try to remind myself that I was once that mother too. Its not fair. Its not fair for me to discredit their concerns and its not fair that Vada is going through this. I know. That's where my bitterness kicks in. The problem for me is that I just don't understand any of this. Why so much? Why with her? I hate to sound like a big baby myself, but she has been through so much, I wish I could take it for her. She deserves a fair chance at life. To run and play like any other child. She has enough to deal with, she doesn't need anything more. I don't hate God, actually, just the opposite. I feel a strong need to be at church, but I cant get there with Vada. So I listen to our pastors sermons on podcast and I pray, a lot. Sometimes I wonder if this is Gods plan. Is he trying to break me? Push me down as far as I can go? Test me? Show me where my place is while secluding me from my friends, family and activities? No. I believe not. Its something else. Maybe its to show me whats really important. Okay, I get it. I know that my husband and children are first, after him. Now, stop this mess. Let Vada grow and live and let us love her and watch her grow. Please.

Dr. J. made a comment yesterday, "Why so many diagnosis for such a small baby." he followed that comment by turning to me and saying "Your a good strong woman, and mother." All I could do was give a weak smile, because inside I was breaking. If he only knew that I was already shattered and worn. "If Vada can be so small and yet so strong, then I have to be too. For her." I said. I stood up and walked out to the desk to make our appointments for the following weeks to come.

That's all. That's all I know for now. Ill continue to read about it so I know what to expect and I will continue to update everyone.

I like to blog. However, I have a hard time finding time to do it. So with that being said, ill try to stay up to date on the important things in life.

And now to sweeten up the situation, a little eye candy. Taken with my cell, so not the highest quality, but still sweet.