Update on the New Diet

Oliver started the ketogenic diet the last week in September to try for seizure control that his medications were failing to provide.  I want to give everyone a quick update as to how things are going with the diet.  Jadey and I have been pretty close-mouthed about telling people how the diet is working; for all his other med switches, we have felt at first that the seizures seem to be fewer, or less severe.  After a few days, though, it becomes apparent that nothing has changed, and we are disappointed.  We decided not to make any quick judgments about the diet and to be very vague when talking with people about its effects. 

Here's a brief rundown of what the diet entails.  It's basically a very high fat diet, with limited carbs and protein.  Oliver is on a 4:1 ratio, which means he eats 4 grams of fat to 1 gram of carb and protein.  His meals are planned on an Excel spreadsheet that pulls in nutrition information for the foods.  We calculate the meals to make sure they are a perfect 4:1 ratio with the right amount of calories, and we weigh them out on a gram scale.  Jadey usually does the weighing, and he spends 1 to 1.5 hours every night portioning out Oliver's 5 meals for the next day.  There are several of Ollie's favorite foods that he just can't have anymore since they have too many carbs.  Things like cereal, pasta, milk, and bread, which were once his favorites.  He can still have small amounts of fruits and vegetables calculated into his diet though, which are also some of his favorite foods.  The specialists aren't exactly sure how the diet works to control seizures.  They know that the diet forces the body to burn fat rather than carbohydrates, which produces ketones in the bloodstream.  They think the ketones are absorbed into the brain and change the chemistry of the brain somehow, thus providing seizure control.  For children with hard-to-control epilepsy, the diet can work very well.  It's usually only offered to children who have failed several medications since it is so difficult to implement. 

Although the act of making a statement about how the diet is working is causing me to cringe... here are a few things I do feel semi-comfortable saying about how the diet is working for Oliver so far.

First, Oliver IS having fewer seizures.  He used to have up to 5 every day, that we saw; the seizures were very easy to miss, so we were confident he was probably having more.  Nowadays, we will see 1 seizure every couple of days.  It's been this way pretty much since week 2 of the diet, so I do feel confident that he is having fewer seizures.  However....  There can be a honeymoon period for the diet, which means that the diet could stop working and seizures could come back anytime from 3 months to 1 year later.  I am realizing that this diet could work long-term, or it could stop working anytime, but for now, Oliver is having fewer seizures.  HURRAY!!!

Also, Oliver is learning faster and doing more than he was before the diet.  Here's an example.  Ollie's OT has been working on stacking blocks for months and months, and she wrote a goal for him to learn to stack 2 blocks.  A couple of weeks after starting the diet, Oliver stacked 5 blocks without any trouble, and the other day he stacked 9!!  This is pretty amazing-- he tends to be a really slow learner.  He would take hours to learn something another kid would learn in half a minute, and then the next day he would have to re-learn it.  That's not really the case anymore.  He's also started singing-- he can sing "Twinkle Twinkle Little Star" and "This Old Man" if he's in the mood.  He can't talk yet, but he can sing!  His keto team at the hospital said that increased attention and alertness can be a so-called side-effect of the diet.  It's been very exciting to watch him learn and develop over this past month!

At Ollie's last neurology appointment, we agreed to start weaning his current seizure medication, vigabatrin.  I can't wait for him to be off vigabatrin, which has some really terrible side effects.  However, although getting him off vigabatrin was a big goal of mine when going on the diet, he definitely won't be medication free on the diet.  He has so many things to take, including a medication to treat acidosis, calcium and vitamin supplements, miralax, and the newest one- an enzyme to help him digest fat.  I haven't had to give him this many pills EVER, not even when we were on 3 different seizure meds at once!

This diet has given Jadey and me something we really needed- hope.  The more I learn about it, the happier I am that Ollie is on it.  When reading about the diet, I discovered a list of conditions that have been found to respond better to the diet, and tuberous sclerosis was on that list.  Five or 6 diseases actually respond better to the diet than other causes of hard-to-control epilepsy, and TS is one of them.  It's kind of mind-blowing, and it makes me really excited. 

So if anyone is willing to send prayers or positive vibes our way, we would be grateful.  Mostly we want the diet to work; the optimal would be for 100% seizure control, although the odds are against us there.  We really want this fun side-effect of improved learning and attention to continue.  Also for Jadey and me, that we can continue to implement the diet, since it is very difficult and time consuming.  Thanks to all for your support!

The Latest

It’s finally time for an update!  I have taken a break from this blog for quite awhile now, but now seems like a good time to re-inform everyone on how Oliver is doing.  

Since his gigantic, horrible status seizure that happened back in March, a few things have changed.  He went to see the neurologist a week after the seizure for a regular appointment, and she basically said that she wasn’t surprised that he had such a horrible seizure since 1) his brain wave patterns are so abnormal, and 2) he had WAAAAAY outgrown his dose of Lamictal.  When he went off Topamax, his appetite increased pretty substantially (a side effect of Topamax is appetite suppression), and he gained a bunch of weight.  She sent us home with a higher dose of Lamictal.  I do have to say that it was a little unnerving that Oliver’s potentially life-threatening seizure wasn’t more concerning to the neurologists.  We titrated up the Lamictal again with no problem, except for worry that he would have a fever that would spike another massive seizure before we were up to the full dose.  

About a month ago, we noticed Oliver having some strange episodes again.  He gets a semi-strange expression on his face, and then his mouth twitches, like a one-sided smile.  His breathing sounds strange, almost as if he is snoring, and sometimes his hands or face tremble slightly.  These episodes usually last for only a few seconds.  He has been having these episodes increasingly often; before, he would have a couple in a week, and now he is having several per day.  I emailed the doctor 2 weeks ago; she increased his Lamictal again, but it isn’t helping.  It seems like a new type of seizure that the Lamictal doesn’t control.  I emailed the neurologist again a few days ago that the increased dose hasn’t helped and that the seizures are getting worse.  I just got a message from a nurse in the neurology department that said she wanted to talk to me about the new treatment plan for Oliver.  It's frustrating-- my phone didn't ring, so I didn't know they even called.  Now it's too late-- I can't call back until tomorrow...  Argh!  Jadey wants to start Oliver on Keppra, a new medication, in addition to keeping him on Lamictal.  I’m not sure what I want to do; the Keppra idea sounds like a good possibility, but I want to see what thoughts the neurologist has, too.  Part of me wants to take him in for another EEG, but another part of me is still traumatized by our last experiences at the hospital and wants to stay away.  I wish good answers existed for the questions we have. 

Developmentally, Oliver is doing ok.  He is still really delayed in all areas, but he is making progress and is learning new things.  He is still using a picture communication system to request things, which is going really well!  He still can’t talk, although he does make some vocalizations.  He is constantly learning to understand new words and phrases, which is really fun for the speech therapist side of me to see!  He still has a lot of trouble using his hands, and he has some social delays as well.  Jadey and I went back and forth about taking him in for an autism evaluation, but we decided to wait for now.  Oliver already has a diagnosis that will qualify him for every service he needs, and he has a lot of strengths that may not fit so well with a diagnosis of autism.  I am afraid that if we do get him diagnosed, teachers and therapists may overlook those areas of strength and only see the diagnosis.  I think when he is around 6 or 7 we will look into getting some thorough diagnostic testing.

We are gearing up for the tuberous sclerosis fundraising walk, which is coming up in less than 2 weeks!  Jadey and I would love for anyone and everyone to come out and join us.  We also appreciate any donations on our team’s fundraising page, although please don’t feel pressured to donate!  Here is a link to our team page:

http://my.e2rm.com/teamPage.aspx?teamID=271107&langPref=en-CA&Referrer=http%3a%2f%2fecommunity.tsalliance.org%2fPage.aspx%3fpid%3d542%26srcid%3d544

If you are interested in donating to medical research, though, TS research is a great option-- this research also provides knowledge into treatment for several other diseases, including autism, cancer, and diabetes.  It’s pretty amazing.  I want to do a blog post about the importance of medical research one of these days/months/years…  It’s unbelievable how many more treatment options there are now that weren’t around 20 or 30 years ago, and it’s all thanks to medical research.

That’s pretty much our everyday life related to TS!  There are always strange-looking seizure events to question, hours of therapy to attend every week, doctor appointments, and new skills for Oliver to learn.  Life is anything but leisurely!

UPDATE: I just talked to the nurse this morning, and they want to increase his Lamictal again...  I'm not all that excited about this option.  It looks like it will be another 2 to 3 weeks of this until we know if this new change is or isn't going to help.