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?!?!

Quite the imagination?

I was decompressing somewhere in the house. Brandon was giving all the little kids a bath. Sophie was screaming her head off. Which is very UNusual for her. She loves bath time. She is constantly trying to find a way to take a bath or shower several times a day. But things have been off lately...ever since we started weaning the Dilantin.

I should of helped. But I was too tired. Besides, it was only a few minutes later that Brandon had Sophie out of the bath and wrapped into a towel. It was my turn to take over so he could finish up the other two still in the bath.

So I took her to her most favorite place in the house. My bed. Between the position of the room (in relation to the sun) and having the blinds closed, it is usually fairly dark in the room. It is a place I take her to several times a day when she is in sensory overload.

She immediately calmed down and smiled at me.

So I asked her... Why were you crying?

She replied... I was scared.

Scared of what?

A raccoon!

A raccoon?

Yes! It was at the front door.

It was at the front door?

It smell me.


At first, I thought...what book are they reading at school. Now I am wondering if it was a hallucination seizure. That thought just entered my head as I was typing this post. Maybe because I had just read this article.

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?

A little bit of this...

And a little bit of that.

Just to warn you...this post is going to be random.

Tomorrow morning we leave for Detroit for Sophie's post-op follow-up appointments. We meet with Dr. Sood (neurosurgeon) on Monday. MRI on Tuesday. And we meet with Dr. Chugani on Wednesday. This is a good visit. A fun visit. We get to tell everyone how WONDERFUL Sophie is doing. That she remains SEIZURE FREE!!! That we had a great weekend. That the behavioral issues seem to be getting better. A LOT BETTER. That Brandon and I compared Sophie to developmental charts and believe she has gained an ENTIRE YEAR in the last 5 1/2 months since surgery. We get to say thank you for NOT taking the easy route. Because Sophie's case was a risk. A risk that a lot of neuros would not take. But my words will fail to truly express my gratitude. But I think they will know. Just by spending a few moments with Sophie.


So...YES...the behavioral issues are subsiding. We (me, Brandon, Debbie, the entire staff that works with Sophie at school) have worked hard to find some sort of method to try to get her to understand the consequences to her action. I think she is finally getting it. HOORAY!!!


And the development...WOW!!! Her vocabulary has gone from maybe around 75 words pre-op to more than 300 words. And she uses them ALL DAY LONG. Even though she had 75 words prior to surgery, she wasn't using them on a consistent basis. You would hear a word here or there. And they were very basic words. Mostly labeling. She didn't really use them to communicate. She is now putting 2 words together on a consistent basis. She knows all the names of her classmates and teachers and will say "hi (insert name)" spontaneously.


We increased her Depakote two weeks ago. She is now on 4ml three times a day. Depakote is also a mood stabilizer. Hmmm...I wonder if this has helped with her behavioral issues because the two events just so happen to coincide. She is also still on Dilantin (1.6ml two times a day). And that is it. No other meds.


Halloween...I never did elaborate on why it was such a wonderful day. I cannot describe in words how much fun we had on Halloween. Sophie got it. This was THE FIRST holiday (or any special occasion) that she understood. She had a death grip on her basket. Once we went to the first few houses, she was ready to trick-or-treat around the whole neighborhood. At one point, she had dropped her basket and her candy spilled out. She looked up at me and said "uh-oh all gone". I picked it all up and she was happy as could be. When prompted, she said "tic-a-tic" and "thank you". But other than that, she did everything on her own. She held her basket out when people offered her candy and then she would turn around and start walking to the next house. Or if they told her to take some candy, she would just take one or two pieces and put them in her basket. The only time she got upset was when we went home.

Yet another EEG...

The med game continues. Except we are on the other side. Before we were always trying to find the right combo to stop the seizures. Now we are trying to find the right dose to make sure they don't come back. Trust me...I realize what side I want to be on. But the thought of a 24 video EEG has my stomach all in knots. Especially dealing with all of Sophie's behavioral issues. So I am nervous about her getting hooked up...tomorrow morning at our local children's hospital.

After the grid surgery, Sophie was put on Dilantin and Depakote. We had issues getting her levels up while we were in the hospital. They did quite a few boluses. They eventually got the levels up to the lower end of the therapeutic range. We got her blood drawn two months after surgery. They were really low. Dilantin was 1.3 (therapeutic range is between 10 - 20). Depakote was 26 (therapeutic range is between 50 - 100). So I e-mailed Dr. Chugani and he suggested we increase the Depakote and check levels again in six weeks. So we did. Dilantin stayed the same and Depakote increased a measly 4 points. So I e-mailed Dr. Chugani again and he suggested that Sophie get a 24 hour video EEG before making any more med changes.

I know it is only one night in the hospital. Seems like nothing compared to brain surgery. But I am still stressed. I not only have to think about myself and Sophie but there is also Elsa and Charlie. I am also anxious to see what her EEG is going to look like. Is it too much to hope for a clean EEG? She has never had a clean EEG. They were always constantly chaotic. I do not even know if it is possible to have a clean EEG after getting almost half her brain removed.

By the way, if anyone in the area wants to come by and say hi, give us a call on our cellphones.

Grrrr...

Another night of vomiting means another day in the hospital. Sophie vomited again...ugh!!! It just doesn't make sense. It is only once a day and it is right after dinner. At least this time it was not as much as the last 3 nights. Then again, we barely fed her today. Breaks my heart. She barely has any energy. She is still on IV liquids so she is getting what she needs but she wants to eat so bad.

Even though she is vomiting, we still started her on a liquid suspension of Depakote (Valporic Acid) that is given orally. She is getting 150mg 3x/day. The liquid suspension is absorbed much quicker than the Depakote sprinkle capsules. Plus we mix it with a bit of Sprite and she doesn't mind the taste. She gets it as soon as she wakes up in the morning, later in the afternoon and right before she goes to bed. So this dosing schedule does not interfere with her vomiting routine.

I am not sure what or when they will start the liquid suspension of Dilantin.

Brandon is taking the night shift (NaNaw took it last night) and I am off to bed.

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).

Felbatol...

On Monday evening, we started Sophie on Felbatol. This will be the last medication we try before the surgery. Dr. Epi said this was the only other recommendation she had before the surgery. She had mentioned it to us back in March and we discussed it with our local neurologist and he agreed. We had the blood work done and prescription in hand when we received the call about Sophie being presented at the surgical conference. Needless to say, everything got put on hold. Well, Dr. Epi mentioned it to us again last week. She said she has seen success with this drug when everything else has failed. So after e-mailing back and forth a few times with Dr. Chugani, he was on board.

We started off with .5ml on Monday evening. On Tuesday, we increased to .5ml twice a day. Today, we increased to .5ml three times a day. Our max dose will be 2ml three times a day. So far, we have not seen any difference. We are also down to 100mg of Banzel twice a day. We are holding steady at 3ml of Neurontin in the evening.

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.

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.

Banzel - Day 3...

It has been 3 days on Banzel at 100mg per day. We haven't seen any results but we weren't expecting to see any at such a low dose. Tomorrow we increase the dose to 100mg twice a day. The straw method of taking the medication is working...such a relief. It is so easy to get her to take her medicine. I am in LOVE with the straw method. I actually tried to get her to take her omegas that way but they were too big to fit in the straw. I can't believe I just found out about it. It would have made things much easier in the past.

I am so hopeful that Banzel will be the "it" drug for Sophie. I haven't been this hopeful in such a long time. It is scary having my hopes up so high at the moment. But at the same time I find myself having a renewed sense of peace. Peace that no matter what happens, Sophie is going to be okay. That she is happy. That is what matters the most. That her smiles consume her day. My day. Her smiles far outnumber her seizures. She is such a happy child. My favorite part of the day is right before bedtime for the girls. And not because it is "right before bedtime". The girls are in their PJs. Fresh out of the bath. Smelling all sweet. Teeth are brushed. They know it's bedtime but they get all giddy. There is this unspoken vibe between them. And they both start belly laughing. Sophie is doing circles around Elsa. Then she gets right into her face. Eye to eye. And they both just start laughing. Then Sophie runs off. Elsa can't take her eyes off of her. Then they start playing, more laughing and Sophie just being her goofy little self. I will have to get this on videotape and upload to the blog soon. It is just way too adorable.

Banzel (Rufinamide)...

Banzel is a new drug that just received FDA approval in November 2008 for Lennox-Gastaut Syndrome. So no one has much experience with the drug. Since my local neuro has not put anyone on this drug, he wanted me to asked Dr. Chugani about it.

So I e-mailed Dr. Chugani to get his thoughts on Banzel. This is what he had to say...

"That's a new drug that seems promising. It just came out. I have used it with good success in several children."

I spoke with another mom who put her son on it about a month ago and she loves the drug so far. She has seen no side effects from it. She has not seen a seizure in the last 15 days (the day after he started the full dose).

So we started Sophie on Banzel today**. We start off at 100mg per day and will gradually go up to 700mg per day, if need be. Banzel should be taken with food since it absorbs better. I waited until she got home from preschool and gave it to her with lunch so I would be able to monitor her for any allergic reactions. I made a glass of chocolate milk and let her take a drink through the straw. Then I stuck the tablet into the top part of the straw and she drank it right down. I can't believed it work. I have never thought about it before. Another mom mentioned the MediStraw on her blog but I forgot to order one so I tried with a regular straw. The tablet is perfect size to fit right into a straw without sliding to the bottom. It gets a little stuck so while she was taking a drink, I slightly squeezed the top of the straw and she drank the tablet down without noticing. I hope it is always this easy.


**I was going to start Saturday morning but for some odd reason she threw up. It was right before breakfast and afterwards she seemed perfectly fine. So I don't know if she just gagged on something. I was actually in the middle of cooking breakfast. After I cleaned her up, she kept looking at the food and saying "num-nums" so I let her eat. She ate a lot and has been perfectly fine ever since.

Testing update...

So I talked with Ruth (Dr. Chugani's nurse that knows everything and anything about the surgery process) last Friday. The only test worth repeating right now is the 24 hour video monitoring EEG. Until the EEG shows a focus, none of the other test matter. Even though all the other tests show only left sided abnormalities, there is no way of knowing if that is truly where the seizures are originating until the EEG shows it. As all the other tests are just not enough evidence to go forward with surgery. So after Ruth discussed it with Dr. Chugani, they are okay with us having the EEG done locally so we do not have to travel out of town. I spoke with Sophie's local neurologist last night and he is going to set everything up. He also brought up trying Banzel (thank you Jen for mentioning that to me in one of your comments or else I would have been clueless). So we are now leaning towards starting Sophie on it. It is just a matter of whether we should start her on it now or after the EEG.

Sweet dreams...

We started Sophie on Neurontin two nights ago. Even though Neurontin is a seizure medication, we are using it for a sleeping aid. Melatonin did nothing for her...probably because her issue was never falling asleep but staying asleep. She has slept through the night on both nights. Though, she immediately threw up after taking last night's dose. We finally found a medication that Sophie cannot tolerate. It is liquid form and I guess it taste terrible even though it is suppose to have a strawberry flavor. I cannot bring myself to taste it but if Sophie thinks it is bad then it is HORRIBLE. Maybe if we mix it in with some yummy drink, she will tolerate it better. Time to start experimenting.

No more AEDs!!!

Can you believe it?!?! Sophie is currently NOT taking any anti-epileptic drugs!!! We have weaned her off Clobazam. It has been almost two and a half years since Sophie has been drug-free!!! We still have her vitamin regimen (multi-vitamin, omegas, pyriodxal 5' phosphate and melatonin). She has had a few bad nights and a few bad mornings due to withdrawal seizures but is almost back on track to her pre-wean days. Clobazam is a benzo and a very addictive drug so it is normal to have withdrawal seizures while weaning it. But we are done. WOOHOO!!!

But I feel lost. Where do we go from here? Sophie's seizure freedom (short of a miracle) is hinging on brain surgery. BRAIN SURGERY. Something we will most likely know in less than two weeks. We leave for Detroit in 7 days. I am scared. Scared out of my mind. Sick to my stomach. It is so emotional. If I knew she was a surgical candidate, maybe I would feel more at peace. But her case is not that clear. Right now it is only a possibility. UGH!!! If not brain surgery, then what??? Where do we go from here. I am trying not to think about it. But I have to. Once you have tried all front line treatments and FAILED, then your mind has to go there. You are constantly thinking what next. You don't have the luxury to fail a treatment and then start thinking about the next option. Precious moments would waste away when you could be trying something different to stop the seizures. Sophie is having seizures EVERY SINGLE DAY.

It's crazy. Two years ago when we had our first visit with Dr. Chugani, I had mixed feelings about brain surgery. I couldn't imagine Sophie having to go through that. I didn't even know that if she turned out to be a surgical candidate that I wanted to go there. Once you take away part of your brain, you are never getting it back. There are no brain transplants.

I just want to curl up in a ball and blink away these next 2 weeks. Wave my magic wand and have all the answers before me. Of course, all the right answers.