The flip side...

Before I continue on with my positive streak (I know one positive post doesn't constitute a positive streak but that is the direction I am going to try to go in), I will update on meds and seizures.

Since Sophie had her third relapse since surgery, we have made the following med changes... Weaned Dilantin. Added Vimpat. Weaned Vimpat. Reintroduced Dilantin. Weaned Depakote. Weaned Dilantin. Added ACTH. Weaned ACTH. Added Prednisone. Added Zonegran. Weaned Prednisone. Added Vigabatrin.

So, currently, she is on 225mg of Zonegran at night and 500mg of Vigabatrin twice a day.

She is tired. She is very wobbly. She is not talking as much.

She is only having one small, very mild cluster in the early morning.

We are waiting to increase Vigabtrin in hopes that some of the side effects will subside. We may have to decrease the Zonegran. And I hope with every last ounce of my being that Vigabatrin will work. Because the next option is to seriously consider surgery. And something as simple as putting on her backpack will no longer be simple. And I cannot bear to go there.

The 3rd time is NOT a charm*...

I have written several posts over the last few months. Never to be published. I have so much anger and sadness and guilt with this relapse. It's exhausting and consuming. So I'll update as quickly as possible and hopefully this one will be published.


We tried ACTH. It FAILED.


I was worried that with the wean of ACTH (actually we switched to Prednisone for the wean) that we would see a steady increase in her seizures. And, at first, we did. But once we got to a higher dose of Zonisamide, the intensity and number of seizures within a cluster started to decrease. She is still having around two clusters a day. Small clusters. Very mild clusters. But seizures they are. On a daily basis.

So we are still fighting. We have Vigabatrin in the waiting (just received the package yesterday) along with the ketogenic diet (our appt is in April). We just increased Zonisamide on Monday night so we will give that a chance and see what happens.

On a good note. Actually...a GREAT note. We have seen improvement with Sophie's behavior. There has been a lot going on with medications since surgery. After surgery, she was on Dilantin and Depakote. Since her latest relapse in seizures we have...weaned Dilantin, started and stopped Vimpat, reintroduced and weaned Dilantin, weaned Depakote, started and stopped ACTH, started and stopped Prednisone and started Zonisamide. So right now, she is only on Zonisamide. With all that said, I think Dilantin was making her aggressive. And I think Zonisamide is making her calmer. She has been playing independently. She LOVES her iPad. She has been singing a lot lately. She has become attached to a few possessions and seeks them out. I have never seen her do that before. She has a Dora doll with Boots in a pouch, a magic wand and a music box. She'll put all three items in this little shopping cart and push them around. Or she'll just want to hold them while watching TV. I think this is a huge developmental milestone.

And speaking of milestones...we had her IEP yesterday. I PROMISE to update very soon with all the progress she continues to make (despite having daily seizures).


*This was the third time we have tried ACTH. And this is the third time it has failed. I just knew it was going to work this time. And why not?!?! She has had the majority of her left hemisphere removed...including her left frontal lobe where all the seizures were originating from (according to the grids that were placed prior to the resection). So, I just knew that ACTH would be powerful enough to stop the seizures from this small remaining area that is still active with seizures. I mean...it was powerful enough to make her gain 6 pounds in less than two weeks, have her face puff up with dark circles under her eyes, have wicked mood swings including roid rage, suppress her immune system, lower her potassium level (she had to be put on a supplement) and so much more ugly stuff. All this for the small sum of $130,000 from a company that has HORRIBLE customer service (and I am just talking about this round of ACTH).

What a way to start off the New Year...

ER visit (via ambulance), overnight video EEG, MRI, gobs of seizures, lots of medication changes and mood swings. All that on top of the normal this time of the year illnesses.

Let's just go straight to the seizures. Sophie had a relapse about 11 months post-op. We increased her Depakote and they immediately stopped. Then she relapsed again 2 months later. We again increased her Depakote and they immediately stopped. (But in the meantime, we scheduled a 24hr video EEG. But, by the time we got in for it, her seizures had stopped so nothing could be recorded on the EEG to determine where the seizures were originating from.)

Then she had her third relapse a few months later (it is now August). So instead of immediately increasing her meds again (hindsight...I believe this was STUPID), we decide to go in for another 24 video EEG to figure out what was really going on. Unfortunately, it took at least 6 weeks to finally get in. And they read absolutely nothing new on the EEG. So I (because I blame myself for everything) wasted all that time doing nothing while she continued to seize EVERY. SINGLE. DAY.

So we decide to wean the Dilantin* and start Vimpat. Seizures became worse. I was in a panic. I did not know what to do. I felt so completely lost. So depressed. So worthless. So helpless. So I turned to Dr. Chugani. We decided that we needed to see him in person to get some direction on what to do next.

*Through all the Depakote increases, her level remained in the mid 30s because of the Dilantin interaction. That's why we weaned it.

Which brings me to 2 weeks ago. A whirlwind of a week. Starting off with the ER visit because Sophie started nonstop trembling at 3am. Something she has never done before. Then we left for Detroit a few days later. Where she vomited at least 4 times in the middle of the night during her EEG. Which almost cancelled her MRI. Luckily, everything worked out and we completed all the testing and met with Dr. Chugani.

He got straight to the point. She was having seizures that originated in the left central region (the motor cortex on the side of the brain she had surgery...the only remaining tissue on that side). Since there was a focus we could opt for another surgery.


Hold up. Wait. Huh? What? Slow down. Breathe.


He did back up and say that we should try a few medications first. With surgery, it's like the brain resets itself. So we are able to go back and try medications that she originally failed. Because maybe those medications were controlling the seizures originating in the left central region but not the ones that were originating in the areas of the brain that was removed. So maybe this time around it would be different. Makes sense.

She is having Infantile Spasms (I hate that name...sounds way too mild). So we need to start over with the front line treatment for Infantile Spasms.


ACTH.


Which, at this point, sounds better than surgery. But it still makes the room spin and makes me want to vomit.


F**K.


That's what I'm thinking. This is f**cked up. You remove almost half her brain and it is not enough for those f**king seizures. They (seizures) want more. Well, they can't have more. She's had enough of her brain removed. ENOUGH. I feel so superficial for wanting to hold on to that little strip of brain. SO SUPERFICIAL. Because if it was any other area...I'd say take it. Which I did...they already have. This is all that is remaining.

So we decided not to jump onto the ACTH bandwagon just yet. We weaned the Vimpat and added back the Dilantin and reduced the Depakote. Wishful thinking really. It worked once. Maybe it will work again. We will see. We have the rest of this week to give it a chance. But our local neuro is already getting things started on the ACTH. It won't be so easy to administer this time around. She's 5 years old. She's 46 inches tall. She weighs 47 pounds. She is strong. Not so easy to inject her with a big ole needle in her thigh twice a day. It's not a quick easy poke.

So that's where we are at. We have to be very aggressive. We are fortunate the seizures have not yet spread to the right side of the brain which would be detrimental to her learning and development. So, if the ACTH fails, then we will try Vigabatrin. And if Vigabatrin fails, then...most likely...surgery.

But, I have to add... I DO NOT EVER REGRET Sophie having the first (and hopefully only) surgery. NEVER. Her developmental gain has been more than worth it. She is amazing. And she continues to amaze us. There isn't a day that goes by where I am just in awe of her. Her speech and language is so rich. And her memory is so clear. She talks in complete sentences about things that have happened months ago.

I am holding on to the hope that I do not have to put her through any more pain. I just don't know if my heart can take it. Did I mention that we are also in the midst of all the paperwork and testing for her to transition to kindergarten in the fall?!?!

EEG results...

We met with the neurologist the morning following the hookup. It is the hospital's procedure to go over the findings and to be sure we got all the data we need before they disconnect. Of course we did, since she has these "movements" every single day. Usually, she has several of these episodes in a 24 hour period.


There was no consistency in the EEG pattern with these movements. But, they believe the movements look like seizures so they believe they are seizures. They believe that the scalp EEG is not able to pick them up. In the remaining tissue in her left hemisphere, she continues to have intermittent spiking when she is awake and frequent spiking when she is sleeping.


She is currently on Dilantin and Depakote. It is a good combination to be on coming out of surgery because they work through different channels in the brain. But the Dilantin speeds up the metabolism of Depakote, so we were never able to get her Depakote level to a therapeutic dose. With each relapse, we increased the Depakote which would temporarily solve the problem. So we are taking a different approach this time. We are weaning the Dilantin in hopes that it will increase her Depakote level and stop the seizures.


We are currently weaning Dilantin with no relief in seizures. In fact, they are more intense. I now have no doubt...they are definitely seizures and they are getting worse. I am not sure what to do. Either her brain needs the Dilantin -or- she is having withdrawal seizures that will eventually stabilize. In the past, EVERY SINGLE TIME we have weaned an anti-epileptic drug (AED), she had withdrawal seizures. Even if the drug did NOTHING to stop the seizures she was currently having.


So, we will play the "wait and see" game and hope the past holds true. I really do not want to add another AED. Dr. Chugani suggested Vimpat. That is one she has never tried so it's time to do my research.

Guilt

That is what motivated my shopping trip today. Causing me to buy 3 bag full of goodies for Sophie. New toys, puzzles, DVDs and her favorite snacks are what filled those bags.


Because those bright red, tear-filled eyes are already haunting me. They are already breaking my heart.


Tomorrow, she goes in for a 24 to 48 hour EEG. Most likely 24 hours but they threw in the 48 hours for "just in case". She HATES getting the leads glued to her head. HATES it. HATES it. HATES it. It is pure torture for her. You should see the fit she throws for me when I want to brush her hair. Her short little bob cut with no tangles hair. She is very sensitive to people* messing with her head...as you can only imagine given her history. Because I still flinch when her mouth comes close to my arm in remembrance of her biting sprees. So I can only imagine the nightmares that must flash through her mind. They still flash through mine.


We are going in because she had been doing some "odd movements" that look eerily familiar. We upped her medication twice and things are looking much better. But we still have to know what is going on.


* Except for her 8 year old cousin Colin. In which, she would do ANYTHING for him...brush her teeth, lay still during diaper changes, brush her hair, take her medicine, etc. She absolutely adores everything and anything he does. He is the coolest person in the world to her. Colin can you please hop on a plane and be here by 8:30am tomorrow?

I'm back...

It's 9:43am on Monday morning. I have exactly 1 hour and 42 minutes of freedom.

I'm sitting at Starbucks, enjoying a latte*, and kid-free! Sophie and Elsa are at preschool and my mom is watching Charlie. I decided updating my blog was more important than buying groceries**.

Monday mornings is "me" time. The only time in the entire week where I can sneak off without an agenda in mind. I'm not allowed to come home until after I pick up Elsa. So I do whatever my heart desires. And today it is this very much neglected blog.

Sorry for taking so long to update. It has been chaotic. Especially with Sophie and Elsa off for winter break. I have been overwhelmed. Things are starting to return to my new normal.

My new normal. That is what has thrown me off these last 7 months. My world has been rocked. I had a very hard time readjusting to my new life. Although it is a better life, change is hard for me. Sophie is a COMPLETELY different person. Of course, I don't miss the seizures. But, at times, I miss my old Sophie. The one that I grew to love and cherish for a little over 3 1/2 years. But I have the new and improved Sophie. The one that remains seizure-free. The one that is TALKING. Actually talking. Not just labeling objects or people. But actually using words without being prompted. All kinds of words. Hundreds and hundreds of words. On a daily basis, I am amazed at the new words I hear that I have no idea how she has learned them. On top of all of that, she is consistently stringing three words together. Like "open the door" or "more snack please".

Then there was the birth of Charlie exactly one month on the day of coming home from the hospital with Sophie. No further explanation needed on how that changes the family dynamics.

So, I'm back. Ready to do a lot of updating. Starting with our last visit to Detroit. It has been a very emotional time. I will try to take you through it all. But I am in a good place right now. Meaning "right now". As I try to take each day as it comes. And the scale has finally tipped in my favor...it seems my good moments in a day are outweighing the exhausted, frustrated moments.

* I am "enjoying" a non-fat, no whip, mocha latte...trying to lose that baby weight. And, yes, I realize drinking a latte, no matter how you make it, isn't part of a diet plan. But I have to cut corners somewhere.

** Going to the grocery store is kind of a joke. Thanks to my INCREDIBLE mother-in-law. More on that later.

Med Update...

Banzel has been a nightmare. We thought Sophie was regressing. We saw quite a bit of decrease in her verbal speech and ability to focus. Broke my heart. Scared me to pieces. But as we weaned Banzel, we saw things start to pick up again. What a relief!!! As of this morning we are completely off Banzel.

On the other hand, Sophie's seizures have been a little scary lately. She mostly has tonic seizures (quick seizures in which her head will drop and her arms will fly out...each seizure only last a second but they come in clusters). But lately she has been having more atonic seizures (head will slightly decrease and arms will fly out but she freezes in this position for 5 to 10 seconds while her body slightly shakes). Usually, she will only have one of these at a time. But on 2 separate occassions, she had 4 atonic seizures in a row. Completely wiped her out. She will immediately cuddle up in my arms and fall asleep for 15 to 30 minutes. Breaks my heart.

So is this because of the weaning of the Banzel or increasing of the Felbatol? She always has withdrawal seizures. Even if the med did absolutely nothing for her seizures!!! ABSOLUTELY SUCKS!!! How can a med that does absolutely nothing for seizures cause them to get worse during the wean??? Luckily, her seizures eventually stabilize.

So for Felbatol...we are currently at 2.5ml/day (1ml in AM, .5ml at 2pm, 1ml in PM).

Another EEG...

I'm anxious. Tired. Just feeling overall gloomy. In about 7 hours we will be leaving for the hospital for Sophie's 24 hour video EEG. I hate staying the night in the hospital. I hate the thought of being confined to a hospital room. I hate the thought of the tears that will be rolling down Sophie's face as the leads are put on her head.

It is going to be a gorgeous day tomorrow. And we are going to miss it. And it makes me mad. Then I think of Zoey and so many other children that have long extended hospital stays. I think of all the gorgeous days they miss. It is not fair.

But we are suppose to be grateful that there are hospitals for our children to go to...to become well. And I am grateful. Just sometimes, there are so many more mixed emotions that go along with it. But, between all of Sophie's hospital visits and all the testing, nothing has made her better. She continues to have seizures everyday. We are now at 600mg of Banzel (we increased to 500mg last Wednesday and 600mg yesterday). Her seizures are not any better. Maybe even a little worse. They are longer. Lasting up to 10 seconds per seizure. But she does seem to have a bit more clarity when she is having a good moment. It doesn't make any sense.

It is hard for me to let go. To know that I have no control. I just try to do my best in getting Sophie the best medical treatment possible. But ultimately I must leave things up to Him. To enjoy all the great things that Sophie does do and not dwell on the medical issues. But it is hard. It is hard watching your child suffer.

So if anyone is in the area and has any desire to come by and say hi...we will be there...just give us a call on our cellphones. We will be counting down the minutes until we get to enjoy some of the gorgeous weather that has come our way.

What a week...

Elsa woke up last Saturday morning with a 102.5 degree fever that just would not go away. I took her to the pediatrician on Tuesday and it turns out that she has a urinary tract infection. She is on antibiotics and finally started feeling better on Thursday night. But in the meantime, she was LITERALLY attached to my hip. Her feet did not hit the ground for days. She was not sleeping very well at night so I was up giving in to her every demand. And demanding she was!!! She is now being detoxed from being spoiled so much. It is not going so well.

On top of that, Sophie was not sleeping very well and was having more seizures than usual. We increased Banzel on Monday to 300mg (100mg in AM and 200mg in PM) and on Friday to 400mg (200mg 2x/day). She is doing much better now and her seizures have somewhat stabilized. Though, she was up at 5am in this morning and had a fairly large cluster of seizures. But she has been in a VERY happy mood ever since then. She was extremely loud and vocal today. The weather was absolutely gorgeous yesterday and today and we have been spending a lot of time outside. We have to take advantage of these days as they come and go this time of the year. (Heather...I think California is calling our name louder than ever).

On top of that, I am 5 months pregnant.

So it made for a very exhausting week.

Hmmm...

Let the guessing games begin. Sophie has been off seizure medication for almost 5 months. So we let her seizures be what they were. She had her good days and bad but we never had to worry about whether to increase or decrease or who knows what to her medication. Like I said in a previous post, I took a hiatus from thinking. It has been almost 3 years since her first seizure and sometimes you just need to step back, live life and not be consumed by the "what ifs" and "what's next". But now I am back in the game. Counting seizures and documenting schedules. Which means I have to consciously try to keep a close on eye on her. Which is not that easy when you have a one year old to also look after. So I try my best.

Yesterday, we increased Banzel to 200mg (100mg in AM and 100mg in PM). Still a very low dose. We will stay at this dose for 3 days before we increase again. Which brings me to the guessing game this morning. Not a good morning. She woke up at 5am and had 16 seizures. She went back to sleep and then woke up around 7am and had another 15 seizures. I am sure it doesn't have anything to do with the medication but it makes you wonder. So now I just hope and pray that Banzel is the "IT" drug for Sophie. I will try and let the next few weeks be what they are and try not to wonder too much.

Where have I been???

Tired. Exhausted. Overwhelmed. Nauseous. PREGNANT!!! Yes. Pregnant!

I am 13 weeks pregnant and just starting to feel better.

I have so much to catch up on. Lots of pictures to download.

Sophie remains off all seizure medications. Her seizures remain relatively stable with one cluster in the middle of the night, a big cluster when she wakes up in the morning, a smaller cluster after her nap, and sporadic seizures throughout the day. She steadily continues to develop...picking up words here and there. She loves the word "doh" (door). She says it all day long. Mostly because she wants me to open the door to either play outside or downstairs.

Sophie turned 3 in October and started preschool at our local elementary school. She is in an integrated classroom where she receives all her therapy. She goes 3 hours every morning Monday through Thursday.

We had a nice long vacation (17 days) visiting my sister and her family in San Diego.

Elsa is doing absolutely incredible. She is signing, talking, walking (trying to run), and climbing. She amazes me at the speed she learns things. She loves to follow Sophie around everywhere and tries to imitate the things she does. The cutest thing is when Sophie grabs Elsa's hands and makes her do sign language (usually the sign for "more"). They are starting to play really well together.

Haley is doing very well in school with one semester of 6th grade over with. She keeps busy with her extra-curricular activities...competitive dance and honor choir. Two things I always wished I could do but never could. I have proved that time and time again in playing Dance Dance Revolution and American Idol on the Wii...it is quite embarrassing.

We had a wonderful holiday season and feel blessed with being able to spend it with all our family coming into town from all over the place. Happy belated holiday to all of you!!!

Sweet dreams...

Three nights ago, we started Sophie on 1mg of Melatonin. On a great night, she will sleep all night long. On a bad night, she will wake up three or four times. Usually, she wakes up twice a night. So the first two nights on Melatonin, she only woke up once. She woke up crying and screaming and had some seizures...which is typical. Well, tonight, she has already woken up twice. She woke up crying and screaming the first time but had fewer than normal seizures. The second time she woke up, she was crying but not screaming and no seizures. I was feeling a bit discouraged that she has already woken up twice tonight but then I remembered that she did not take a nap today. I tried and tried to get her to go down but it was a no go. She usually has a pretty bad night when she doesn't take a nap. So actually I am feeling a bit encouraged with the fact that her seizures weren't as bad. We can still go up on the dosage but I am going to stick with 1mg for at least a week and see how it goes. Sweet dreams my little girl.

That is a beat up Marshall Faulk bobblehead that Sophie use to absolutely love. One day we were playing in the basement and she found it on the shelf. At first, she was afraid of it. Then she would head straight to the bobblehead whenever she went downstairs. Then she started carrying it around. Needless to say, it got dropped on the concrete floor one too many times and is now missing the base it stood on, a leg and an arm but she loves it anyway.

Ughhh...

What sucks more than giving your daughter daily injections of ACTH? Having to still give her daily injections when it did NOT work. Ughhhhhhhhhhh!!!!!!!!!!!!!! Her seizures are slowly creeping back up in numbers. Ughhhhhhhhh!!!!!!!!!!!!! What's next? Who knows. After failing 12 treatments (8 different drugs with trying 2 twice, ketogenic diet, IVIG), it is hard to think up another option. When do you say enough is enough.

I talked with her neuro on the phone the other night. He said he doesn't think anything is going to stop her seizures. He said it is just trying to find a balance of keeping them somewhat under control while minimizing the effects to her development. When I asked if they could possibly morph into a different type of seizure that would be easier to control (I am trying to hold on to a little bit of hope here not really trying to have him predict the future but knowing the personality of my neuro I do not know why I ask him these types of questions)...he says...hopefully but they might not be able to be controlled either. Why...why do I ask him these things. I really need to find a new neuro. I need a neuro that says maybe we will find something...maybe she will outgrown them...just something to keep me hoping. But maybe I should let go of that hope. Just enjoy Sophie day to day. Stop thinking about her future. But what parent doesn't think of their child's future...special needs or typical developing. As a parent, that is hard to do. I never thought about her having uncontrollable grand mal seizures...until now. I should be happy that she is only having uncontrollable tonic seizures and infantile spasms. It could be worse. I should really stop posting so late at night. I am really depressing at this hour. Sorry. So much for my new philosophy of thinking positive. Tomorrow is a new day. I will try again tomorrow. Think positive. I will keep telling myself that.

What to do???

Sophie is on Day 26 of ACTH...only 37 more days to go. ONLY 37 more days!!! Seems like a long time. Brandon and I have a pretty good system down on giving her the shot but it stills isn't any easier emotionally. Especially since we are still on twice a day (for another 9 days).

Her seizures haven't gone away. They are better but they are still there. She is not having as many and they are much more milder. She hasn't had one of the "ones that makes her cry" seizure for quite some time now. It is encouraging that they are better but what does this mean for her. She is absolutely miserable. Always hungry. Always tired. Huge. Uncomfortable. So even though her seizures are better, she is too miserable to try to learn anything new. It is such a struggle to get her to even smile. Her two favorite signs at the moment..."eat" and "night-night". Every time I lay her down to change her diaper, she signs "night-night".

Flashback 2 years and 2 months ago...Sophie started her first round of ACTH (May 11, 2006). Her seizures got better. They were much more mild. But they never completely went away. Once we weaned the ACTH, they came back with a vengeance. They slowly crept up to over a 100 a day.

If the ACTH was going to completely stop her seizures, they most likely would have stopped by now. So now Brandon and I are debating on whether to continue the high dose for another 9 days or start weaning earlier. 9 days may not seem like a long time but when it relates to ACTH...it is a very long time. Especially with a miserable, very hungry, moody, tired, bloated 2 year old. I will be talking with both of Sophie's neuros tomorrow to see what their recommendations are.

Good day...

Sophie had a good day...as far as seizures go. Hip Hip Hooray!!! We are praying that this is it. That today was the turning point. That it just wasn't a fluke.

Sophie weighed in at 36 pounds tonight. Just two weeks ago she was 31.5 pounds. You can see it...in her face and in her belly. She is round. She REALLY doesn't look like my baby girl anymore. After Elsa was born, Sophie looked completely different to me. Laying next to Elsa, I could no longer look at her as my baby girl but my toddler girl. Her legs looked longer, her feet looked bigger. Now she has lost all the babiness she had left. She is just so big. So heavy. So incredibly heavy. And tired. It is so hard to keep her entertained during the day. It is just so hot outside. And if we are inside...she just wants to cuddle up next to me and suck her thumb and hold my hair. So we try to keep her busy. Keep her motivated to do something. We went swimming twice this past weekend. And Uncle Jason took her swimming yesterday. She LOVES swimming. She loves the water. She loves her bath.

Just when we were ready to give up on this drug. Ready to start weaning early. Things changed. It will be easier emotionally to give her the injections if we keep seeing such a positive change in her seizures. I have to believe this. I have to stay positive. Please keep praying for her.

ACTH - Day 8

We increased the dosage today to .4mL twice a day. The nurse came this morning to draw blood* and give the shot and Jake came this evening to give the shot (thank you...I know how emotionally hard that must have been on you...you did a great job...she didn't point to the boo-boo on her leg afterwards like she sometimes does). Needless to say, Sophie was a little wiped out for school today. I wish I would have planned it better to where her increase in dosage was not on the morning before she went to school.

I want to say thank you to everyone for being so supportive through this process. Jason...thank you for coming over the first few days and assisting Brandon with the shots. My IS friends...thank you for all your support and advice...what would we do without the internet?!?! My mom...thank you for coming over during the day and helping out with the girls especially at a moments notice. My mother-in-law...thank you for always being there especially these last few days while Brandon has been out of town...I can't imagine what this morning would have been like if you were not here.

Seizure update... A bit better. No drastic changes but sometimes the seizures are a bit milder than usual. On Monday night, she slept through the entire night without waking up!!! It has been awhile since she has done that. It was absolutely wonderful. Elsa didn't wake up until 5am and then went right back to sleep. They both woke up around 8am. Thank goodness because this was the first time I have ever spent the night alone with both kids. Last night, she woke up at about midnight and had about 5 mild seizures. So her nights have been getting a lot better.


* The nurse was able to draw blood for lab work via a finger poke. Sophie had to hold this warm pack in her hands for a few minutes to increase blood flow and boy did it work. Her finger wouldn't stop bleeding for a bit. It bleed through the gauze pad and we had to put a second band-aid on her. I'll take this any day over trying to fish for a vein in the arm. There is only one nurse at the lab at the hospital where we usually go that can get it on the first try. So YEAH for the finger poke! And BOO for the fact we recognize the nurses who draw blood.

ACTH - Day 3

The nurse gave Sophie her first shot which went okay...just a little blood and a lot of tears but she calmed down within a few minutes. Brandon gave Sophie her second shot which didn't go so well...a lot of blood and a lot of tears and she kept pointing to that spot on her leg all night long. Then Brandon gave Sophie her third shot last night...the best yet with no blood and a few tears and she calmed down quickly. So hopefully this will continue to get easier with time. Last night, after much advice from many different people (thank you all by the way), we decided to swaddle her and lay her down (the first 2 times I tried to hold her in my lap and wrap my arms and legs around her) and it was much easier to keep her still.

Thursday wasn't a very good day. She was very moody and had many seizures.

Friday was a better day. She was in a great mood and had her usual amount of seizures during the day but had a great evening until about 1am when she had a fairly large cluster of seizures that made her scream and cry.

This morning has been much better though and the total count so far is 7 (not including 3 movements that were questionable).

Currently, Sophie is on .5mL (40 units) given at night. On Wednesday, we increase to .4mL twice a day. The nurse will be coming on Monday, Wednesday and Friday mornings to give Sophie the shot so that will be a big help with Brandon's work schedule.

So far, so good...

Two nights ago, Sophie woke up at midnight and had a bad cluster of seizures. They were strong and she had about 30. She was making strange arm movements and crying. She has actually been waking up in the middle of the night lately and having seizures. Well, last night, she woke up at 12:50am. She sat straight up in bed and started crying. It is hard to get her to lay back down. For some reason, laying back down upsets her. So I got her to cuddle up in my arms and she fell right back to sleep. It felt like she had about 6 myoclonic jerks which are different than her infantile spasms and tonic seizures. Myoclonic jerks are where your body just kind of shutters when you are falling asleep...can be perfectly normal. Her arms didn't thrust out. This is a great sign. Then she woke up at 6:30am this morning and Brandon lay down with her and she fell back to sleep without having any seizures. She is still sleeping. Her seizures are the worst in the middle of the night and first thing in the morning. Could the ACTH work this quickly?!?!