Ketogenic Diet or Modified Atkins Diet?

So, the research I have done and read about points to a diet called the Ketogenic Diet (Keto) being the most successful in stopping seizures in Doose kids.  A lot of doctors use this as a 2nd or 3rd line treatment, but the other parents I have talked to on my yahoo support group say this should be a 1st line treatment and not to wait long to get it started.  The results on this diet vary from kids who obtained total seizure freedom to seeing seizure reduction to seeing no change, however it seems that most of the parents I have talked to have at least seen SOME improvement.  So, that is the good news. 

The bad news is that the Keto diet is HIGHLY restrictive and requires the child to be medically monitored and have an entire Keto medical team that treats the child (and family).  The diet is high fat - usually you get the child to a 4:1 ratio which means the child has 4 times as much fat in their meal than carbs or protein.  So, if you were eating something that was 100 calories, 80 calories would need to come from fat.  Everything on the diet is weighed to the gram and every meal has to have a specific balance in order to keep the child in a ketosis state which is what they think keeps the seizures at bay.  If the child eats or drinks more or less than they are supposed to, then they can have breakthrough seizures.  Items that children usually eat every day on the Keto diet are oil, butter, heavy whipping cream - everything is about getting the highest possible fat content.  In addition to the ratio, you are also restricted on calories so if your child is still hungry you cannot given them more food.  The diet is a huge committent (usually have to be on it for 2 years).  Here are some things I have found out about the diet in my research and talking to others.

• Before you start the diet you have to have a battery of tests run to ensure you are healthy enough to start as the diet is very hard on the body.
• In order to start the diet you have to be hospitalized for 4-5 days and monitored by the Keto team.  They starve (fast) the child for the first 24 hours and then start giving them Keto foods.
• Most kids get sick when they start the diet (vomiting, diahhrea, dehydrated, etc).
• The parents get intensive training from the Keto team during the hospital stay and continue to work with that team to make adjustments to the diet after being released. 
• You have to test the child's urine regularly (not sure how often) to test for their ketone level and then make adjustments to the diet based on the level.
• You have to have frequent blood draws to ensure the child is staying healthy on the diet.
• The child has to take many supplements because the diet is so restrictive they don't get many of the nutrients they need.
• You have to change the child's medications if any of them are liquid and mixed with a sugary substance.
• You have to change the child's toothpaste and I've even heard their soap
• You have to eat EVERYTHING on your plate at every meal - you cannot leave anything or your ratio will be "off". 
• He can never eat at a restaurant or school or someone's house, etc. - we will have to prepare all his foods and take them with us or send them with him wherever he goes. 
• Not all hospitals have Keto teams (Mary Bridge  Children's hospital does not) and some have long waiting lists (months) to get in.  If we do this, I will have to be referred to Seattle Children's or Swedish as they both have Keto teams.  I haven't called to find out the wait times for these two places yet. 
• Some kids bodies cannot tolerate the high fat diet and/or they refuse to eat the foods.  In those cases, the kids have to be removed from the diet.

Joshua's seizures started in January and it is now the middle of April so we have been at this about 3 months now and have not had a day without seizures since they began.  We have been on two types of meds now for two months and the seizures have not reduced.  We have some days with less seizures than others and on certain days I feel hopeful, but then a few days later he will have several bad days so we just feel that he probably won't get seizure freedom on meds alone.  I spoke to my neurologist this week while in the hospital and told her we wanted to talk to her her about moving in the direction of Keto.  She agreed and said she would be supportive of that and she mentioned that the diet has proven to have better results than the meds.  She said some kids are too medically fragile (thin, small, health probelms, etc.) to try Keto, but Joshua doesn't fit that bill.  However, she mentioned that we may want to try the Modified Atkins Diet (MAD) first before we move to Keto.  So, what is MAD?

Well, it is similar to Keto, but less restrictive.  The ratio is lower (like 2:1 instead of 4:1) and you do not have calorie restrictions. You do not have to be hospitalized to start, but you do have to be medically monitored and still have a Dietician to work with to be trained on the diet and to help make adjustments.  This is different than typical Atkins - instead of high protein it is high fat.  You still have to eat things like oil, butter, heavy whipping cream, mayonaise, etc. and you are only allowed 10g of carbs per day and do NOT get to add in more over time like traditional Atkins.  You still have to be tested prior to starting to ensure the child is healthy and we would still need to be trained by the Dietician on the diet.  You still have to test the urine for ketones, have blood draws and take vitamin supplements.  We would still have to prepare all his food and take with us as he would not be able to eat food at restaurants or other people's houses or daycare. 

After hearing about MAD and reading about it, we think we are going to try MAD first and if it does not work or we only get partial seizure control than we may move to Keto after that.  We think it will give us a good introduction to this new diet life and it will allow us to see how Joshua will tolerate the diet because if he can't tolerate MAD he certainly won't tolerate Keto.  So, what is success rate with MAD?  I had one Mom tell me that her child has been seizure free on MAD for the last 9 months and they were weaning him off of his last med.  I had another parent tell me they saw reductions on MAD, but not total reduction so moved to Keto after 6 months and then got seizure free.  She thought MAD was a good way to start this out. 

We are going to talk more to the neurologist about the diets on Tuesday when we go in to get the results of his EEG, but this is the direction we think we are going to head in. 

P.S.  Seizure activity has been really reduced the last few days.  He has not had a head drop since Tuesday night and his Myoclonics seem to be reducing.  I'm not getting my hopes up too high as we have had his drops disappear before only to come back later, but I don't think his Myoclonics have ever been this low.  I'm not sure what to think about it - we'll see if it continues and if it does we will discuss with the neurologist what it means.  As I understand a lot of the Doose kids do this - have some good days and then have bad days (you just never know).