Parent Education Night: Alternative Medical Treatments for Seizures

Pediatric Neurology Parent Education Night: 
Alternative Medical Treatments for Seizures

Thursday, October 11th at 6:00 pm

Primary Children's Medical Center Auditorium - 3rd Floor

Parents are invited to participate in a question-and-answer format presentation about seizures. Topics may include diagnosis, disorders, prevalence, medication and others. This is a chance to ask any questions you may have and to meet other parents who have children with seizures.

Discussion Lead by a Panel of Experts:

• Matthew Sweney, MD
• Francis Filloux, MD
• Paula Peterson, RN, MS, PNP
• Eliza Hamilton, RD, CD
• Kim Orton, RN
• Parent Advocate Marin Bywater, LCSW

Sponsered by the University of Utah Pediatric Neurology Division and Medical Home Demonstration Project as part of a quarterly education night series.

February won't cut us slack.

Bertrand coming out of anesthesia in post-op.

He'll be going under AGAIN later this month for his endoscopy.

That's general anesthesia 3 times in little over a month, but who's counting?

After the medical triathlon we'd been running the past several months, we expected a break in February--a chance to settle into a routine with Bertrand's new preschool and therapies. No such luck. Here's a quick recap of Bertrand's week.

Ophthalmology

After being diagnosed with a corneal infection on Monday and going through Same Day Surgery for a biopsy and diagnostics, Bertrand was placed on a full spectrum antibiotic. At his follow-up appointment on Wednesday his eye was pink rather than red and the Doctor pronounced him improved but "not out of the woods". Since then, Bertrand's eye has improved both in color and the white puss patch covering his pupil has shrunken! He has a follow-up on Monday morning where, after a weekend of continued recovery, we hope he will receive the all-clear to resume school, therapies and other outings.

Neurology

We received the medical reports from Bertrand's visit to Cleveland Clinic. (I'll try to condense these in a separate blog post.) Bertrand uneventfully completed his Zonegran wean! He also unintentionally completed a wean from the Ketogenic diet without incident, but we are still holding our breaths. We plan to keep steady over the next 1-2 weeks to give his body time to find its balance after the weans, infection and whatnot. We're waiting to hear back from Bertrand's neurologist at Primary Childrens' Medical Center in regard to initiating a Keppra wean or an increase in Lamictal, but I'll probably have to ping her again within a few weeks. We also have a follow-up with her in early April.

Gastroenterology

Bertrand's gastroenterology appointment on Thursday was the first time he's been congratulated on his weight! He is down to 85 percentile! The GI doctor was also pleased with Bertrand's continued reduction in liver function values. He tentatively approved valproic acid (Depakote) treatment for seizures contingent on continued carnatine supplementation. Given Bertrand's vomiting black chunks (most likely blood clots) during his sickness last week, the doctor would like to conduct an endoscopy to check for stomach ulcers and check for pancreatitis. Both these conditions are very common in "neurologically complicated children" like Bertrand given the number and quantity of medications. New labs will be drawn for liver function, etc. during the endoscopy, and I am waiting to hear back on the scheduling of this proceedure. Assuming--fingers crossed--that the endoscopy is unremarkable, we will follow-up with GI again in June/July.

Genetics

We should be hearing the results of Bertrand's genomic sequencing at Duke in early March.

Bertrand looking a bit shellshocked but grateful to be out of surgery.

Focusing on the POSITIVE: Bertrand's EEG

September 2009

Keppra only.

April 2010

6 months Ketogenic diet (4:1) and keppra.

May 2010

2 weeks ACTH (and ketogenic diet).

June 2010

5 weeks ACTH (and ketogenic diet).

Note: The preceding EEG images were taken during drowsy periods. And, the ketogenic diet is nullified by ACTH since the resulting steroids increase glucose.

EEG Improvement on ACTH

Bertrand's neurologist was shocked by the improvement shown on Bertrand's EEG today. It took until midway through the EEG to see the first spike. He had no clinical seizures during the EEG.

This was all to my surprise because Bertrand has been so miserable the past month (and in particular the past two weeks), it has been hard for us to see any improvement at all. If anything, we thought he had gotten worse because he is no longer sitting unsupported or playing with toys. He rarely smiles and no longer laughs. He just sleeps or moans or does both simultaneously.

I walked into the appointment ready to give up on ACTH and steroids, but with the news about the EEG improvement I resolved to give them a bit longer: 3.5 months. Yes, Bertrand will be on ACTH for 2 more weeks and then on prednisilone (a steroid) for 3 months.

Here are some other highlights:

1. ACTH and steroid titer schedule set (ACTH 1/2 dose daily for 1 week, then ACTH 1/2 dose every other day for 1 week, then Prednisilone 1.0mL twice a day).
2. Zantac 1.5mL twice a day in addition to current Prevacid 15mg.
3. See pediatrician ASAP to check for gastric ulcer. (Appointment Wednesday.)
4. Expect call from dietitian about weaning off the ketogenic diet.
5. Bertrand must lose about 2kg.
6. Schedule EEG and neurology in August to discuss additional medication, etc.

An App For That

Since the precise cause of Bertrand's problems is still unknown, we have to take a scientific view on Bertrand's treatment.

To put it a little too dispassionately, Bertrand, to us, is a laboratory experiment.

We track all of his activities, all of his inputs and all of his outputs.

And, we look for patterns and correlations. Mostly, we look at the effects of things like changes in diet, medication levels and sleeping patterns to see if they have an effect on his seizure levels. It's important to log everything so that we don't succumb to personal impressions.

Until very recently, we did all of this with pencil and paper logs and an occasional mass transcription into a spreadsheet.

This approach got to be tedious. We were always wondering where we'd last had the logbook. And typing up all that data was a real pain.

So, I created an iPhone/iPad/iPod Touch/web application for Bertrand's medical log. Now, whenever we're within reach of a cell phone, Bertrand's iPad or a computer, we have access to his medical log. The result has been a major quality of life improvement for us, and for Bertrand.

We now have all of his log data in an easily queried form, and we have it with us at all times.

Here's a screen shot of the app on the iPhone:



It's pretty simple. It's just a series of "events" by day. Each event has a time, a type and an amount associated with it. One feature I added during his ACTH treatment was a running calorie/fluid intake counter at the bottom of each day:



We discovered from this that Bertrand was drinking over 2 liters in fluids each day--twice his recommended level.

To speed data entry, when you click on the type of event, it gives you the option of any type of event that's happened within the last 3 days:




Since there's a small set of activities we track, we almost never have to do any typing on our iPhones, which makes it quick and easy to make log entries. By selecting an entry, we can change its time, and we can choose to duplicate it for right now, or delete it:



Finally, it looks great on the iPad, where we can see almost a day's worth of info at a time:


Last week, when I was in Washington, D.C., I found myself repeatedly checking the app on my phone to see how Bertrand was doing.

So, yeah, there's now an app for that.

[I wrote a post on my blog about how to create native-looking iPhone apps in HTML, CSS and JavaScript if anyone is interested in the technical details; the source code is available there as well.]

24 hours of ACTH and a bit discouraged

The happiest day in my life. I didn't know then that it would lead to some of the saddest days in my life.

At 3:30PM yesterday, Bertrand began a course of ACTH gel injections. He has received three injections so far. He has had lot of seizures today--more than all of last week's seizures combined. It is a bit discouraging. We know that because he is still producing large ketones and his glucose still reads as low (consistent with a 4:1 ketogenic diet), perhaps we are not seeing the full effect of the 90 units of daily ACTHar gel. I can only hope that over the next few weeks (preferably days) we'll see the improvements that ACTH is famous for and not so much of the side effects that it is infamous for. Fingers crossed.

Bertrand Speaks Out!

At today's Parents' Epilepsy Support Group Meeting, Bertrand showed off by smiling and speaking to everyone at the table! He thinks that the next meeting on May 8th should be at 11:30 AM at our house, and so it shall be! We're so proud of our little activist!

Today's EEG - Not so good?

Some days I resent my MD from wikipedia. Today is one of them. I wish I were one of those parents who could blithely go along with doctors and accept what they're told... Not really. That would be a heck of a lot easier than the hell I am putting myself through today, but someone needs to be awake at the switch for Bertrand's sake. Apparently that person is me.

Okay, enough preamble. What did Dr. Mom get from Bertrand's EEG today?

First of all, and this should be obvious, sleep deprivation for a child with epilepsy is a BAD idea. This is the first EEG Bertrand has been sleep deprived for and it sucked. I guess for most kids it helps them fall asleep and not move as much, but let's be honest with ourselves here: Bertrand has a movement disorder. His last sleep study confirmed that he moves almost as much asleep as he does awake--which is saying something. Furthermore, rather than seeing the new, improved Bertrand we got the old, seize-y, exhausted Bertrand. His new EEG looked like this:




Could this be slightly better than his older one? You be the judge.

Secondly, this EEG confirmed that Bertrand has photosensitive epilepsy, which we suspected. During the intermittent photic stimulation Bertrand's EEG looked like this:



Now, what had me really upset about this EEG wasn't the brain portion as much as Bertrand's electrocardiography (ECG or EKG) line, which is an interpretation of the electrical activity of the heart, during this EEG. Whenever Bertrand moved or sighed really big the EKG would hitch a little (which is normal) but during this period Bertrand was completely STILL. Here is the series of images of that over a period greater than a minute--look at the red EKG line on the bottom.







At first I thought that there was something wrong with the contact on B's chest, but as you saw, the EKG returned to normal on it's own. Since there was no video recording of this EEG, the technicians were under the impression that Bertrand had simply been moving or fussy during this period--which wasn't the case! Bertrand hadn't moved at all! So now I am faced with the decision of whether I should bring this up to B's neurologist. I happen to know that Bertrand's echocardiogram done at Duke was perfect. Will his neurologist think I am crazy? a pest? Or even worse, could this serve as a red herring, causing her to take even longer to adjust Bertrand's treatment? I really don't know if I should say anything. I'll have to consult with my favorite neurologist first.

Based on this EEG, I think that Bertrand may still be on track for trying ACTH treatment for his seizures (which would require coming off the ketogenic diet first). Furthermore, whether or not there were any changes in the EEG doesn't matter because, as my daddy always says, "you must treat the patient, not the EEG." Bertrand HAS improved over the last few months: he is more stable, he is smiling, he is laughing, he is more verbal, and overall his quality of life has improved significantly. And, that's what matters.

UPDATE: Whew! Spoke with my Dad in regard to Bertrand's EEG. The EEG is still highly abnormal (duh) but he thinks the one bad EKG episode may have been due to electrical interference from another electrode, since Bertrand was having a particularly bad subclinical seizure. Part of what suggests this is that the red line went from resembling an EKG line to resembling an EEG line, the other part is that Bertrand is still alive. Lovely.

A Grateful Morning

I've been hesitating to make a post about the following out of an irrational fear that I may somehow jinx it: Bertrand has been doing really well! He seems to be back to his physical capability before the arm break in February, but that's not all. Bertrand is more verbal and expressive toward people. He is smiling and laughing more than ever before. When alone in his room it sounds like he occasionally sings songs to himself--not babbling or cooing--music is the only accurate term for it. Another odd positive is that he is louder! Since he was an infant Bertrand's volume has always been muted, but as of this week he sounds as loud as a normal toddler! He's been having clumps of what we call "seizure free" days (days free of myoclonic, astatic/atonic and tonic seizures), but also a lot less of the seizures we can't easily count, such as the absence or complex partial seizures. He is so much more "here".
Here is a story from this morning to illustrate. At 6:30 am Bertrand woke up for his bottle. I fed him and afterward tried to put him in his bed because he usually takes a short nap until about 8am. Well, today he wasn't having it. He started yelling--not crying--yelling immediately. So, I turned back to him (I could tell he was still tired even though it sounded like he was cursing me out) and asked him, "Bertrand, would you like to sleep with Daddy?" He immediately quieted and put his hands together as he does when he is very interested in something. Then he arched his little back to tell me to pick him up. I did and put him in bed with Matthew. Bertrand gave me the biggest grin, cooed (a thank you, as I would like to believe), smiled a sleepy smile again and closed his eyes. And, that was it! How wonderful is that?! I took a moment to stare in awe at my two amazing, beautiful, sleeping guys, basking in the feelings of joy and gratitude. As I went downstairs to make muffins, I couldn't help but feel that life couldn't get any better. :)

Such saggy muffins are what you get when you forget to adjust baking recipes for high altitude. They tasted great though!

NEW Parent's Epilepsy Support Group!

From left to right: Me & Matt with Bertrand, Sarah & Adam with Cole,
John & Ashley with John Jr., Niki & Brian with Cole.

Last weekend, four families and one representative from the Epilepsy Association of Utah held the very first Utah Parent's Epilepsy Support Group meeting! I can confidently say that everyone got a great deal out of the meeting, except possibly the "dieters" themselves (as you can tell from the picture above), who were all under the age of two. :)

The meeting was put together and hosted by Ashley and John, parents to John Jr., who, while Utah natives, currently live in California. Also in attendance were Niki and Brian, parents to Cole, and Sarah and Adam, parents to Cole. All four boys are either on, or will be on, the ketogenic diet.

While the group was originally established as a way to connect families with children facing the ketogenic diet, it's being opened up to families of children with forms intractable epilepsy, such as Dravet's Syndrome and Doose Syndrome (MAE) who may or may not be on the ketogenic diet.

The meetings will be held monthly at a member family's home so that all children (including siblings) will be welcomed. And, no one will judge or seem even remotely surprised if a child has a seizure, needs a diaper change, cries, or sleeps the full time. It was such a relief to be in a room where no one gave us odd looks for Bertrand's behavior!

An asset worth mentioning of this group is Niki who, as noted above, is mom to Cole and has also battled epilepsy herself since childhood. Furthermore, she has a background as a service provider for the Utah Division of Services for People with Disabilities (DSPD). Given my ongoing struggle with the DSPD, I am looking forward to learning more from Niki! Maybe I can even convince her to grant our first blog "interview"? ;)

Extracurricular Treatment for Epilepsy?

Now that Bertrand's arm is on the mend, he has been making some great strides. We believe that this is in large part due to his current treatments, chiefly:

• Ketogenic Diet
• Keppra
• Vitamin B6
• Branched Chain Amino Acids

However, while we've seen a great reduction in the number of seizures, Bertrand is not yet seizure free. While this may still be possible on our current course, it is not likely. Therefore, we're looking ahead for potential cutting-edge treatments. Here are a few:

• Hormones/Steroids: This group includes intravenous ACTH, Solu-medrol injections, and oral prednisone. As mentioned in prior posts, steroids in epilepsy work primarily by reducing inflammation in the brain. The respite provided by the steroids gives the brain an opportunity to heal. Unfortunately, in many cases, this effect is only temporary, and other measures such as oral steroids, AEDs or the ketogenic diet are needed as a follow-up to maintain seizure control.
  
• Intra-Venous Immune Globulin (IVIG): Gamma globulin is a class of antibodies that we all produce. Our body normally uses gamma globulin to bind viruses, bacteria, fungi as well as unusual proteins, toxins, etc. Once these irritants have been bound by the gamma globulin they are cleaned up and eliminated by other cells of the immune system. If there is a virus or an autoimmune antibody that attacks one’s own tissues, the IVIG can neutralize it if there are no other solutions present. IVIG also reduces immune system reactivity and inflammation present in the brain.
• Stem Cells: Even minute brain injury barely undetectable on an MRI can cause of epilepsy. Stem cells have a way of knowing how to go to areas of insult/injury to repair damage. In Bertrand's case, autologous (his own) cord blood stem cells could by transfused and given a shot at repairing his injured/lost white matter.
  
• Hyperbaric Oxygen Therapy (HBOT): In a study done in 2005 at the University of Pittsburgh it was determined that hyperbaric therapy causes the body to make 8 times as many stem cells as normal (this may explain why several brain related traumas respond to it). And, the oxidative stress of hyperbaric oxygen therapy reportedly improves tissue growth and vascularity.

Bertrand laughs... the sequel.

Today I sat in on Bertrand's class at his "preschool", the Carmen B. Pingree Center for Children with Autism. I left with such a full heart because the staff there treats Bertrand (and all their kids) with so much love and respect! As a result, they can and do work miracles. The video above showcases the simple joy of playing with a rainstick which we learned there today!

In class, B touched the pages of a book on his own initiative and throughout the day he laughed more times than I could count! I am so proud of my little man! It seems that he is finally turning the corner with his broken arm. Also, with the ketogenic diet ratio change 3 weeks ago and the addition of branched chain amino acids, is it possible that we're finally seeing the results?

Neurology Update

According to Bertrand's neurologist, "I would wait and reschedule it [the EEG] for 4 weeks out from when you increased the ketogenic diet to 4:1 ratio which I think was less than 2 weeks ago. I don't expect it to take effect that quickly. Also, we discussed him at an attending conference. The general feeling was to give the ketogenic diet a little more time and then consider ACTH. Problem with ACTH is that it is great short term but the myoclonus tends to recur less than 6 months from stopping so he may need to go on prednisone or dexamethasone for prolonged time. I am worried about his weight and the fracture, so want to give this time to heal before starting."

Utah Keto Get Together on March 27th!

Pretty much all anyone needs to know is that the keto cuties John, Cole and Bertrand will be in Holladay on March 27th. ;) All keto cuties young or old with their families, or anyone considering/wanting to learn more about the ketogenic diet for a child with epilepsy, are welcome! Just leave a comment on this post (be sure to include your email) and either John's mommy or I will send you an evite. Yippee! I can't wait! :)

Keppra: Love and Hate

Last Tuesday Bertrand had, by far, his best day in weeks. He was engaged, happy, smiling and giggly. Bertrand was finally able to sit back up on his own, play with a toy, and started to make wonderful new sounds--the most exciting of which was "our honey go". He was so energetic, in fact, he didn't nap all morning or afternoon. Regardless, I was so overjoyed at how well he had turned the corner... that was until I finally tried to put him down for a nap at 2:40PM. That was when I discovered that Bertrand's Keppra dose from the morning, was still sitting next to his bean bag, un-administered. Shocked, I gave Bertrand his missed dose--and I haven't seen that happy, chirpy baby ever since. :(

I am conflicted.

We had already, on our own initiative, slowly reduced Bertrand's Keppra from 400mg twice a day to 300mg twice a day with no corresponding increase in seizures. Taking the dose any lower, however, should probably be vetted by Bertrand's neurologist. Given prior conversations on this topic, the answer will be to increase the keppra, not to decrease it. But, at what point do we say that the attempted seizure control, at the expense of our child's happiness and personality is not worth it? After all, it's not clear to what degree the Keppra is controlling seizures versus the ketogenic diet.

Letter to Bertrand's Neurologist

Hi Neurologist,

When I spoke with Keto Nurse about Bertrand's labs last Thursday, she said she wasn't comfortable with Bertrand's liver values to raise his ratio to 4:1. However, Bertrand has had significantly higher liver values in the past--before the diet. And, he had low glucose because the lab took almost three hours to get someone from IV team to draw Bertrand's blood, so he was missing his afternoon snack. I don't like the sensation of treading water with Bertrand's treatment if there is *any* way in which we could be helping him. If we're still going with the EEG on March 26th, I would like your support to try the 4:1 diet beforehand. The urine strips we use to test Bertrand's ketones also test glucose, so I will closely monitor both.

That said, if we've gone as far as you think we can go with the diet (having to remain at a 3.5:1 ratio), we would like to try a steroid treatment. You know how nutty I am about researching all things with Bertrand. :) I've spoken with 5 different moms whose kids used steroids to treat MAE. The most popular arrangement seems to be a 5 day course of solu-medrol IV, followed with a prednisolone titer at home. (They've said that the body has to turn the prednisone into prednisolone by function of the liver, so prednisolone would work better for Bertrand.) After that, three of the kids went on the ketogenic diet for maintenance and to avoid going back on AEDs. One of the kids who did the treatment last year and didn't do keto afterward just had to go back in this week for a second round of solu-medrol.

In regard to steroids, speaking with both Bertrand's Pediatrician and Orthopaedist, Bertrand's bones don't seem to be a long-term concern. However, there is some additional blood work his Pediatrician recommended as a sanity check.

We understand that treatment has to balance many aspects of an individual's well-being. In Bertrand's case, we feel his cognitive development is crucial to his well-being, and as such, very much worth pursuing.

Thank you :)
Cristina & Matthew Might

A Brief Update

• Bertrand's pediatrician believes that there is a significant chance that his arm fracture may not be a result of his condition--just a normal toddler break. As such, steroids can be left on the table as a possible epilepsy treatment.
• Bertrand's keto team is uncomfortable upping his ratio from 3.5:1 to 4:1 due to his recent lab results. Glucose in particular was a concern. B's neurologist will get back to us on how to proceed re: diet, EEG and steroids.
• Bertrand's medical team will be having a pow wow in the near future with a focus on improving his physical and cognitive development and what trade offs need to be made (bone v. liver v. brain etc.). This would include his keto team, neurologist, pediatrician, geneticist, hepatologist, epileptologist and orthopaedist.
• Bertrand is getting to be more like his mother every day. At physical therapy today it was discovered that he has her same limb length discrepancy (left leg is longer). His stander has been adjusted to compensate and in the future he will need a lift in his right shoe.

Super Dad

As you can probably tell from our blog inactivity, the last few weeks have been unusually challenging for Bertrand (and me) due to his broken arm. Today was even tougher than usual, but fortunately for us, we had Super Dad on hand. Matthew really put his Family Medical Leave to work today! He started the day off by preparing Bertrand's keto meals ALL BY HIMSELF and then attending a 3-hour mandatory parent training session at the Carmen B. Pingree Center for Children with Autism (Bertrand's preschool)--during which he took notes. Then Matthew dealt with home repair issues--including buying a new water softener since the old one flooded our basement. After that we headed up to Primary Children's Medical Center (PCMC) where we all met with Bertrand's keto team. And Matthew topped the day off perfectly by "cooking dinner"! (Read: "bought McDonalds". Hey! It still counts!)

Anywho, Bertrand is capable of having at most 3 "seizure free" days in a row at a 3.5:1 ketogenic ratio. This is a fantastic improvement, but we'd like to see him completely seizure free if possible. If the labs which were ordered today look good, then we can go forward with a 4:1 ratio for the next month and see how his EEG looks on March 26th. From there we will know if we have to stop the diet temporarily to try the so-called "beast killer", ACTH. (You may remember hearing about ACTH earlier on our blog as the treatment for Allgrove Syndrome.) However, resorting to ACTH, or even a lesser steroid like prednisone, has been compromised by Bertrand's recent arm break. Steroids weaken bones, (one of our neuro's patients on just prednisone fractured 4 vertabrae) which is not good when bones are already weak. We'll be consulting with B's orthopaedic surgeon regarding the steroid option.

Bottom line: lab tests and blood draws will continue to be an important part of Bertrand's life for a long time to come. So, at the lab this afternoon, Bertrand needed 25 mL of blood drawn and after 4 pokes he had ZERO mL of blood to show for it. We have to return tomorrow afternoon and hope the poor little guy has better luck. Labs that are being drawn include: SCN1A (gene test, results in 6-8 weeks), Iron, (due to restless leg), Vitamin D, Selenium (both due to the ketogenic diet) and Bertrand's usual comprehensive metabolic panel.

School, sleep apnea and more

For those who missed it on Twitter: Bertrand watching an Elmo video on an iPhone.
Our first easy meal at a restaurant!

Tomorrow begins my carefully orchestrated week of daily visits to Carmen B. Pingree with each of Bertrand's therapists. Bertrand's therapists will be training the staff at CBP on his quirks, strengths, and how to integrate what they've been working on with him into his lessons at CBP. The staff-to-student ratio at CBP is 2:1, but Bertrand will be getting his very own 1:1 aide. To prevent him from becoming overly dependant on an individual, everyone has to be trained so they can rotate through with him. Bertrand starts school on February 8th.

Bertrand's sleep study results came back this past week. I've been more bummed about them than I really should be. I guess I'd convinced myself that sleep was one area in which he excelled. Turns out that Bertrand has 3.9 apnic episodes per hour. Kids under age 10 are suposed to have less than 1. He barely enters REM sleep, which is an important sleep state for memory and learning. He also has restless leg syndrome. In my opinion, this is all seizure related. I don't see the point in removing his tonsils. Control of the seizures will improve his sleep quality. That is what I am telling myself. We'll do another study in a year.

Iron deficiency can be one of the causes of restless leg syndrome, since iron is essential for dopamine transmission. We'll be testing Bertrand's iron levels, along with vitamin D, selenium, usual metabolic and liver functions, as well as the genetic test: SCN1A. SCN1A is the gene associated with over 80% of the cases of Dravet's Syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI). Let's hope this is another genetic test that comes back negative, but if it comes back positive this would open the possibility of using an orphan drug like stiripentol.

On the keto front, I'll be picking up Bertrand's fancy-schmancy compounded keppra Rx (400mg twice a day) from University Pharmacy tomorrow! It is being made with stevia and the taste of vanilla (mint, chocolate and marshmellow were the other non-carb options). Also, we've gotten the green light to up Bertrand's ratio to 3.5:1!--a 50/50 mix of KetoCal 3:1 and KetoVolve 4:1. We need to wait another week before shifting ratio to ensure we've seen all we are going to from the keppra increase. Then we have to wait more time before adding the branched chain amino acids! Yes, we got the yellow light for the BCAAs! Our dietitian is currently researching what the appropriate therapeutic dose for Bertrand would be.