So much going on...

We visited our neurologist today. We're going to increase Lily's vigabatrin dose a little bit, and then we are having an MRI on Friday to make sure that the side effects she experienced last time on vigabatrin are not present this time.

We probably won't do an EEG unless we stop seeing spasms. Sigh. That seems so unattainable to me, and it's hard not knowing if Lily still has hypsarrhythmia or not. But, there's no reason to go through the pain and inconvenience (and believe you me, they are inconvenient) without some change in her seizures.

I mentioned that Lily has these "eye seizures" where her eyes dart down & to the left during a cluster of spasms. His explanation is that it is probably an ictal or post-ictal response, not a different kind of seizure. He said that after spasms, the brain is still in such chaos that the firing happens along the same pathways and it's just a "symptom" if you will of her brain calming down. So depressing.

We also got referrals to the dental clinic and the ophthamology clinic.

Other than those things it was massively uneventful. I suppose that's good, but it's also hard to be in this "Well, just keep plugging along" mode. It feels like giving up on finding out and fixing the cause of the seizures, and just "accepting" that this is Lily's lot. That she's stuck with it forever. Suck.

Oh, I did ask about having a muscle biopsy (to rule out a mitochondrial disorder) done during the MRI, and Dr. S thinks that we don't need to do that. He thinks we won't find anything and wants to wait until they have this fancy-schmancy gene array stick thingamadinger that is significantly less invasive but will yield better, and faster, results. Ok, whatever.

The other stress going on is just about money. You may have noticed a few posts regarding fundraising for Lily's therapy. Well, we've tapped out all our resources for Lily's therapies & medications, and the well is dry. She has benefitted so much from ABA therapy. Despite having (arguably) the best insurance in the country, our ABA therapy is only covered about 60%. Hippotherapy is not covered at all, and vigabatrin has to be ordered from Canada (though this is about to change).

All told, we figure we spend about $1,500 a month on therapy and medication for Lily. So we are frantically pursuing any and all kinds of grants, state & federal aid (which there is basically none) and trying to be creative in ways to save money and make money. It's stressful and hard.

In good news though, tonight we went to the Open House at Lily's preschool and she was SO HAPPY to be back! She went ALL over the room, squealing and waving and just generally being happy. It was really wonderful to see her remember her classroom and teacher, and be so excited to be back there. Next Tuesday she starts back and she'll be taking the bus like a big girl on Tuesdays & Thursdays with her brother Hank. They'll be part of the inclusion program together. Wed/Fri I will drive her, but I'm excited to see how the bus goes. I'm also excited to have three hours all to myself on Tue/Thurs!!! What a novelty!

Lots to update on!

Well, where to start...so much going on...

We had a fantastic trip to Detroit, MI & Loveland, OH. We spent great time with family and cousins, and learned a wealth of information from Dr. Chugani.

Lily loved having all that space to roam around in the airport:




In Detroit, everyone in the EEG lab was fantastic. They bundled Lily up super tight, making it look like a little EEG Spa:


Lily did fairly well in the hospital over night:


The overnight stay was tougher than I'd planned for. Lily was confined to the bed 100% of the time so she could stay on camera. Also, they require the parents to stay awake the whole night so that we can "push the button" when/if the child has a seizure. Lily doesn't have siezures in her sleep, so I wasn't prepared for this. WHat made it especially tough is that the rooms don't have a "parent light" over the seats, so I couldn't have any light on to read. Also, they block a lot of the channels on the TV so no Law & Order or Sex & the City re-runs to keep me entertained. No laptops allowed. I had loaded some tv shows on my iPod to entertain me, but I had no battery due to a little mishap the night before. :( So that was tough.

All in all though, the overnight went fairly well. We went direct from EEG to the PET lab. EVERYONE working in the PET lab was just amazing. They were warm, accomodating, gentle, and supportive. THey were so great with Hank, always making sure he had toys & entertainemnt. THey had a 2nd little waiting room that they let us just take over while we were there.

Waiting for the PET:


G'nite, little bean:


Hank works on the scan:


We ended up having both kinds of PET scans, the FDG & FMZ (the FMZ is the "study" PET that Dr. Chugani is running) so we had to go back on Wednesday for the 2nd scan.

On Thursday we met with Dr. Chugani to go over all the results. He spent nearly two hours with us answering tons of questions and discussing Lily. What we leared is that Lily is not a surgical candidate, and will not be in the future either. We can cross that option off the list.

Lily has bi-lateral hypometabolism in the temporal & parietal lobes of her brain. These areas of the brain control the higher-functions of learning and function: visual processing, memory, and language among other things. Dr. Chugani showed us pictures of the scan and the hypometabolism (areas where the brain doesn't process glucose as well) is nearly identical on both sides.

The most interesting thing about his observations of Lily was how he picked up on and really spent a lot of time talking about her autistic features. He talked about a small sub-population of kids with infantile spasms who are also autistic. This sub-population, kids he's observed for 15+ years, all have similar features, similar PET scans, and similar behaviors. This leads him to believe that htey all have some sort of undetermined genetic condition that leads to this. Dr. Chugani is also running this very large-scale gene bank that we all decided to participate in. We all (including Hank!) gave a vial of blood that will periodically be run against new findings in genetics. Dr. Chugani has access to the super-duper genetic tools that the NIH has, so he's making great strides in this area.

Dr. Chugani does not think that the cause of Lily's seizures is a mitochondrial/metabolic issue, however we take that with the same grain of salt that we take Dr. Saneto's believe that her seizures ARE mito related. Everyone has their biases and interests...we'll pursue them all until/if we ever find something. (A definitive answer/diagnosis likely won't change the course of Lily's life, but could have implications for Hank's reproductive future, and if we decide to have any more kids in teh future.)

One of the best things Dr. Chugani was able to clarify for us was with regards to the distinction between development & seizures. We'd always operated under the belief/assumption that the learning was directly linked to seizure activity. Must stop one to achieve the other, wehn in fact they are separate. This really tied into his observation of Lily's autism. He encouraged us to aggressively pursue theraipes designed for autistic kids. As I mentioned in a previous post, some of our other IS friends have had great success with ABA therapy. Dr. Chugani encouraged us to "embrace" her autism diagnosis, let go of feeling like posers, and use that diagnosis to get whatever therapies & treatments we could for Lily.

(Despite getting the autism diagnosis in August, I have been reluctant to embrace it and jump into the autism community as I didn't feel like Lily was "autistic enough". I don't believe her seizures/autism were/are caused by vaccinations, and I'm not necessarily going to pursue biomedical treatment for her. Finding acceptance as a parent of a child with special needs is tough enough; I didn't want to be "shunned" from the autism community. Dr. Chugani encouraged me to let go of all these feelings and jsut do what was best for Lily. Come to find out, he was totally right, and I'm learning SO MUCH about therapies and thigns to do with Lily!)

So, along those lines Lily starts her assessments for the ABA program next Monday. I'm thrilled to have hooked up with A.P.P.L.E. Consulting to provide Lily's ABA. One of our therapists is a good friend of my sister-in-law, Tiffany, and was in her wedding last summer. I was fortunate to spend time talking with Hayley about Lily and learning about how ABA will really help Lily's development. I'm THRILLED to be starting it next week.

Also next week, Lily has an AAC evaluation at Seattle Children's. This is another thing that neurodevelopmental suggested we do last August (and it took this long to get it scheduled, YIKES!). AAC = Alternative & Augmentative Communication. It's a two hour long eval and at the end, recommendations will be made about programs to use to teach Lily communication. We're going to have a large team of Lily Supporters at the AAC; her SLP from Cascade will be there, as well as her teacher, paraeducator, and PT from school will be there. Of course, Todd, Hank & I will be there, and Amanda our Nanny is coming too! WOW! Lots of people behind Lily, supporting her, and wanting her to get as far as she can!

Day to day, Lily is doing just great. We're so very happy we stopped the ketogenic diet in December. Lily is so much happier! We feel that it has also really increased her fine motor skills, as well as communication. We're using a few PECS with her at meal time (she can use the PECS to ask for more cheerios & a drink). She did the most amazing thing the other day! She was hungry, and whining a bit. So she came over to me at the sink, took my hand, and pulled me over to her high chair, indicating that she was hungry and wanted to eat! Of course I whooped it up and rewarded her with a snack!! GO LILY!!!!!!

Lily is done with the Ganaxolone study, and we've started her on a new medication called Banzel. Banzel was developed as an adjunct therapy for kids with Lennox-Gastaut, a different but related seizure disorder. We've seen good results with it, however we aren't seizure free. We're in teh midst of trying to decide if we're going to add a 2nd medication to her cocktail, or where to go from here.

All in all, we're in a good place right now.

Long time no post!

I'm such a bad blogging mama! It's been ages since I've checked in. Rather than recapping the past six months, I'm just going to give a quick summary of where were at, and then start updating from here.

Ganaxolone - Study Med
Lily continues on Ganaxolone. She is currently at the highest dose the drug company will allow, and it is helping reduce the # of seizures, but has not made us seizure free.

EEG
Lily had a 24-hour EEG last month which indicated that she was A) still having spasms, and B) still having hypsarrhythmia. Bummer. But we already knew 50% of that, right? She's having a "hypsarrhythmia variant" which essentially means it's a more organized hyps, due to her growing up. Our neurologist said that while it was different than a year ago, it was not improved. Big bummer.

Therapy/Early Intervention/Pre School
In November/December, we made the decision to discontinue Lily's therapies through Wonderland, and instead enroll her in a private therapy center. We were sad to leave our therapists at Wonderland (although we maintain contact with them), but we're SO happy we made the switch. Lily's needs are so great that the model Wonderland had adopted just wasn't enough for her. Now she gets direct, intense physical therapy twice a week, and speech/OT once a week. We're very happy with this.

We are also enrolled in the once a week preschool class at Little Red. Last fall I tried desperately to find a good preschool program for the twins, but there just wasn't anything to accomodate Lily's needs. I finally called the people at Little Red just in tears, and they made arrangements for us in their program. We are ETERNALLY grateful, and are so very happy there. Hank goes to a twice a week class on Monday & Wednesday, and Lily goes on Wednesdays (in a different class).

We're also facing our transition to the school district as the twins' 3rd birthday looms ever closer. The Shoreline School district (where we live) has an adequate special ed program, however they don't enroll typical "peer models" (ie: Hank), so the twins would have to go to different schools. Not my ideal situation, not to mention very inconvenient! Also, Shoreline is experiencing a "budget crisis" and have significantly cut funding for Special Ed. I've talked with some people also, parents & others who have experience with the district, and the reviews are mixed. So we're exploring options on this front as well, including requesting an "intra-district transfer" (meaning she'd go to school in a different district), and/or moving to a different district.

I constantly joke that I need to make myself a t-shirt that says "Yes, I am THAT parent." LOL!

What's going on now
So, where do we go from here? Well, we're most likely starting Lily on the Ketogenic Diet (click link for Wiki about the diet). We met with the dietician yesterday to get a sense of the diet and how the program works at Children's. We enjoyed our discussion with her, and feel hopeful that the diet will be a good move for Lily.

We're weaning her off Prednisone (FINALLY), so she'll soon only be on the Ganaxolone & Topamax. Hopefully if the diet is successful, we can eventually wean off Topamax and/or Ganaxolone (though Topamax would be my 1st choice).

Aside from all the medical, seizure related stuff, Lily is a gem. She walks around (unsteadily; we call her our little Pinball!) and likes to pick stuff up off the floor. She loves toys that shake/rattle, make music and/or light up. She will occasionally sit still to look at a picture book. We're working very hard on trying to get her to put objects into a container. She's good at taking stuff out, but doesn't seem to understand putting them in.

She was great with the Christmas tree! She would try & touch it but responded when we would say "No, no Lily!" in our "warning" voice. Frankly, we had a harder time with Hank & the tree than we ever did with Lily!

She still isn't the best sleeper. She takes a while to fall asleep and then generally wakes up once in the night for an hour or so. She's also the 1st to rise every day, usually an hour or more before her brother.

One of my goals for the year is to be better about blogging about Lily. I know there are people who check here every day (you know who you are!), and who care so much about Lily. I hope to be better about this than I was last year. :)

Started Phase 2

Well, we're now 60 hours into Phase Two of the Ganaxolone trial. I should probably explain how this works.

The study is a double-blind, placebo controlled trial. The way it is set up is this:
The subject (Lily) is randomized into the control group, or the study group. The results of this are not known to anyone. During week one, the subject starts out on "Bottle A" of medication. This bottle could have Ganaxolone, or it could be placebo. This medication is titrated up to the full dose (meaning we start at a small dose, and slowly work up to full strength) over a couple days.

After a 24-hr EEG, Phase 2 begins. The subject remains on Bottle A, and Bottle B is added. Bottle B is titrated just like Bottle A was. At this point, ALL subjects in the study are getting Ganaxolone. You just don't know what bottle has the med. Some people get it starting with Bottle A. Others don't get it until Phase 2 with Bottle B.

So. At the end of Phase One, Lily was having a rough go of it. She was having tons of spasms, all through the day. I felt like she wasn't making as much eye contact or responding to her name as well (and since I'm the mom & around her most of the time, I get to make that call. :) ). And her EEG was a COMPLETE mess. NOTHING even remotely resembling normal. Tons of high volt spikes & waves, complete chaos. Total hypsarrhythmia (although Dr. LA called it only hyps while she was sleeping; looked like hyps to my untrained EEG reading eye).

This led me (and [my] dad, he was here this week) to believe hope that she was on placebo last week.

So, Lily started Bottle B (and continued on Bottle A, remember) on Wednesday afternoon. Since then, she has had drastically reduced clusters of spasms. In fact, I think since then she's only had six total clusters. Yesterday she had no spasms after 10:30am. She had one cluster this morning (15 spasms) after she woke up (which, all things considered, was to be expected because she got the nighttime dose early last night [at 6:00pm instead of 8:00pm] so we could be discharged from the hospital a little early). So she'd gone 14+ hours without a dose of the med. Then she had two small spasms when she woke up from her nap this afternoon, again when she was due for the next dose.

And I think (and dad concurs) that her eye contact & responsiveness is better.

So, this reinforces my thought hope that she was on placebo last week and is now getting the med.

(The worry is, of course, that she was getting Ganaxolone in Bottle A & it just didn't work for her. That's the risk you take with any epilepsy med; we just have/had high hopes for this one.)

We bump up to the highest dose of Bottle B tomorrow afternoon. The next few days should be telling. And of course, hopefully her EEG will be much clearer than it was last week. That sucked. A lot.

Dad leaves tomorrow (BOO!!!!), so the twins & I will be on our own for a few days. My mom is coming down on Wednesday with Very Good Friend Donna, and Toddy arrives back on Friday night. My 30th Birthday is Saturday and I think we're going to make the trek over to Disneyland. Fun times, and plenty of photo ops.

Home from the hospital, WHEW

Well, we made it through our first admission & 24-hr vEEG. It actually went better than her first 24hr EEG went back in January. We originally asked for a crib, but once we got to the room, we realized that a regular bed would be much easier as then we could sit on the bed & hold her on our lap.

Turns out that was the right choice, and she did really, really well. Her EEG is still abnormal, however she doesn't have constant hypsarrhythmia. She does have a modified hyps while sleeping. It was tough that Lily didn't go to sleep until around 11:00pm on the 1st night (her normal bedtime is 7:00pm), and then she was awake from about 2:30-5:00am.


playing on the bed (you can really see how flexible she is in this picture!)


all smiles!

resting on mama


the hospital has a program where volunteers bring in their dogs for visits. We visited with a lovely woman & her chihuahua, Robert Henri (pronounced rho-bear, Ahn-ree)

On Wed, Thu & this morning, Lily was just in for observation during the start of the study. We received her 1st dose on Wednesday, mid-day. We don't know if it is placebo. We haven't noticed any huge changes in Lily, but she maybe just isn't titrated up to the appropriate dose yet.

Oh, and two days before we left, Lily got her DAFO's (orthotics). She's still trying to figure them out (and we haven't been great about working wiht her in them, given the road trip & hospital stay), but she looks wicked cute in them:


And a couple pictures of the roadtrip (and big-twin-brother, Hank):



My dad arrives tomorrow & Todd leaves on Sunday (boo hoo! We will miss him!). Lily doesn't have to be back at the hospital until Wednesday, and that admission is for only two nights. Hopefully we'll see some seizure improvement over the next few days, or if she's on placebo see some good improvement next week!

First Appointment with Dr. Bow Tie

So yesterday morning, we had our 1st appointment w/Dr. Bow Tie. He was rapidly inducted to the "family appointment" as my mom, dad & brother all joined Todd & I for the appointment.

I'm just going to do stream-of-consciousness style to update the visit, so this may jump around a bit.

Lily's EEG showed spike & wave activity plus modified hypsarrhythmia while sleeping. It's improved over her initial diagnosis (when she had hyps all the time), and it is good that she doesn't have the hyps while awake. But, of course we're going for seizure free & clear EEG.

The activity appears to be even across all hemispheres of the brain, and therefore he does not think surgery is an option. I would eventually still like to pursure a consult with Dr. Detroit to get his opinion. There are many, many stories of local neuros saying "not a surgical candidate" but then Dr. Detroit works his magic & does surgery & child becomes seizure free.

Dr. Bow Tie thinks that the skin/muscle biopsy is definitely a worthwhile test as apparently metabolic/mitochondrial disorders can also show hypometabolism on a PET (which is what Lily's showed). Of course, cortical dysplasia also shows as hypometabolism on a PET, so it could still be either. My gut tells me we're working with some sort of dysplasia as opposed to a metabolic/mito disorder, but then who knows? So, there isn't an urgency to get the surgery and/or 3T-MRI, so we can put that off a bit.

The biggest news, perhaps, is that we've added Prednisone back into the mix and lowered her Topamax. Dr. Bow Tie didn't even flinch when I said that I had backed off a bit on the top, and was very agreeable to lowering it to the level she was at when she had the 24-hr EEG (75mg 2x/day). In all, we've lowered the dose by about 45% which I'm pleased about. I've already seen a big improvement in her level of alertness this morning, and her playfulness. We started the prednisone this morning, and so far I don't think I've seen any spasms this mroning. We'll see how the afternoon goes, of course.

We also talked about Ganaxolone. We think that actually Lily won't qualify for the study because she's tried more than two AED's over the course of her treatment. So I'm going to email the director & ask about that, and if she does NOT qualify, I'm going to ask about "compassionate care". Compassionate care is apparently where someone who doesn't qualify for the study, but would sitll benefit from the drug, can appeal to the FDA to get an exemption & start the med. Hopefully I'll hear back from the director soon.

That's pretty much it. Oh, I guess if the prednisone doesn't work in controlling the spasms, and if we can't get Ganaxolone, the Keto Diet is our next move. Cameran's Mommy, Karen, posted a great description in Cam's blog of what their typical day on the diet is like, complete with diet menu. Starting the Keto Diet would be a HUGE committment, and very time consuming & tricky (with a brother who likes to "share" his food with Luh-leee), but if it helped control the spasms, we'll make it work.

About the 24hr EEG

I wanted to share a few pictures of Lily's 24hr EEG.

First, Lily has the leads placed on her head & they're "glued" on with this foul-smelling glue. Lily was wrapped up snug as a bug in blankets so she wouldn't rip the leads off. She loves being wrapped up like this & nearly fell asleep a couple times.


Then, her entire head is wrapped with gauze (to keep tiny fingers away from the leads!), and then a "stocking" is placed over the gauze which protects even more & keeps the wires in a tidy bundle.

They take a baseline EEG in the prep lab (where they do the short EEG's), and then they moved us up to the telemetry unit where we settled in for the night.

Managing Lily with all the leads attached was much more difficult than I thought it would be. Not only did we have to monitor the leads, but we had to make sure she stayed on the camera the whole time (they video the entire test so they can correlate her clinical seizures with the EEG activity).

For the most part, Lily tolerated it just fine.


I was able to capture a picture of Lily's EEG, to give you an idea of what it looks like:

In the picture above, you can see the squiggly lines behind the video picture of Lily (she's laying down in the middle of the bed). Those are the lines showing the electrical activity in her brain. (For those of you who are used to seeing EEG's, this picture was about 30 minutes before the end of the test & Lily had managed to take of two leads, thus the flat lines in the middle of the screen). The red line across the bottom is EKG. Notice how there is no pattern at all to the lines; it's total chaos.

In comparison, here's a picture of a normal EEG:

Taking the leads off made Lily very sad:

But juice makes it all better:


And just for fun, here are a couple pictures of Lily REALLY enjoying her dinner:

Lily's 24 Hour EEG

Lily had her 24-hr EEG on Tuesday. I haven't said much about it because I wasn't worked up about it at all. However, it was WAY harder than I anticipated. I thought it would be relatively easy, I mean, it's just hagning out in a hospital room w/leads attached, right?? Not so much. Keeping the leads & cords untangled while lily was crawling around EVERYWHERE was a challenge! plus, she wanted to take the stocking off all the time whcih was a pain in the arse. Then they wouldn't let Hank spend the night, so he had to go to my mom's. It was the first night the twins have EVER spent apart. THey did OK...I think it was harder on me than anything. Lily had a very rough night, sleeping little. I guess it's hard to sleep w/metal leads all over your head. But, a sleep deprived Lily + stress of the situation = lots of seizures. I think she had over a dozen clusters in teh 24 hours (normally she only has 3 or 4), with many individual spasms in each cluster. THe good news is that this provided GREAT data on the EEG.

We don't have a final report, but what we do know is that these spasms are indeed spasms/seizures, and not some other kind of movement disorder or something. This wasn't surprising at all. What was surprising was that she doesn't have hypsarrhythmia anymore. She still has a very chaotic pattern, but it is no longer considered hyps. I can't remember the name he gave to the pattern she has now. The majority of the activity occurs on the right hemisphere, with a small concentration on the occipital lobe. This correlates with the findings of the PET scan, however her seizures do appear to be generalized.

We're in a bit of a tricky spot. We see Dr. Red Sox Fan, a pediatric neurologist. We've seen him since Lily was dx'd, and we love him. He is warm & gentle with Lily, and genuinely seems to be interested & caring of her outcome. He has come down to the hospital on days he's not normally there just to see us. However, he is not an epileptologist. Epileptologists are also neurologists, but they specialize in epilepsy (thus the name, natch).

The epileptologist who was doing telemetry while Lily was in was Dr. Bow Tie. Dr. Bow Tie is quite familiar w/Lily's case. He's the doc who confirmed that her MRI changes were likely due to Vigabatrin and not that awful mito disease, Leigh's (a terminal illness for anyone who wasn't here, or doesn't remember). Dr. Bow Tie is a an epileptologist, and he also specializes in metabolic/mitochondrial disorders. He's read many of Lily's EEG's & is also helping to write the paper on the vigabatrin side effects. So, that's his background.

This week was the first time we've ever talked/met face to face. And we LOVED him. He was VERY smart, knows A TON about epilepsy & infantile spasms. After we talked w/him on Tuesday afternoon, Todd & I were thinking, "hmm...why aren't we seeing an epileptologist?" Not that we don't adore & respect Dr. Red Sox Fan, but Lily's case is OBVIOUSLY complex &; difficult to manage; why aren't we seeing someone who specializes in this?

We talked w/Dr. Bow Tie more about Lily on Wednesday, and I finally asked why we didn't see him. He was cautious in choosing his words as he didn't want to disparage Dr. Red Sox Fan, or reduce our confidence in him, but it seemed pretty clear that he (& Nurse Wonderful, the epilepsy nurse practioner [who we also ADORE]) kind of thought we should be seeing an epileptologist, even if it wasn't him.

So, I think we'll be switching. I have to craft an email to Dr. Red Sox Fan because I'm SO BAD at face to face confrontation that I just can't bring myself to "break up" with him in person. I want to talk with Nurse Wonderful a bit more about how the transition will work, but I'm pretty sure we're switching.

In terms of what is next for Lily, I think we're still going to get the 3T MRI. Children's up here just got the 3T magnet so we won't have to travel to Portland for that. We're also considering a SPECT scan, but I think we'll discuss that more after we've made the change to Dr. Bow Tie. Both tests are really just more ways to search out the cause of the spasms. And to confirm what we all suspect is there -- some structural abnormality in the right hemisphere, likely in the temporal or occiptal lobe, of her brain. It may or may not make her a surgical candidate...that just remains to be seen. Dr. Bow Tie seems to think that if she were a surgical candidate, we'd be looking at a total hemispherectomy (where they'd remove HALF of her brain, YIKES), as that is what most kids w/generalized seizures have (meaning there is no one origination point; they start from the entire half).

We see surgery, especially a hemispherectomy, as being a last ditch effort. As such, we've put travelling to Detroit to see Dr. Detroit on hold. Dr. Bow Tie has also told us about a new drug that is in clinical trials that he thinks Lily is a perfect candidate for. Childrens will likely be one of the primary test sites too. It's a new neurosteroid that acts similarly to ACTH but without the side effects of steroids. So she could theoretically stay on it longer (she can only be on ACTH for ~8ish weeks before the s/e become too bad). Dr. Bow Tie feels it is a good fit because she responded SO well to the Israeli Protocol (long time ACTH high dose, followed by slow wean & prednisone). He didn't particularly like the rate/dosing of Lily's wean or prednisone when she did it. He thought it was too fast. Which, while he didn't say it specifically, implies that if we had stretched it out longer, she might still be seizure free. Argh. (and the schedule was drawn up by our beloved Dr. Young Neuro, who lives on a pedestal in my mind, so it must have been fine).

Attempting the Israeli Protocol again (UGH! ACTH for a THIRD time!!) is not out of the question either.

Basically, Dr. Bow Tie had lots of ideas of things to try, but seemed unwilling to reccommend/direct us to do any of them because Lily wasn't his pt.

Dr. Red Sox Fan told us to increase the topamax a bit, until our scheduled appointment w/him on Tuesday. However, I'll probably cxl the appointment if we're switching, depending on when we can get in to see someone else. Dr. Red Sox Fan doesn't have a lot of faith that a topamax increase will help, but Nurse Wonderful & Dr. Bow Tie seem to think it is a logical choice, with a decent chance of working.