Wednesday, October 30, 2013

Blood, Oil and Butter - the complex brain of our son

I keep thinking that after 3 years of Max being on the Keto Diet (Mod Atkins) that we would "have it down."  I often beat myself up over the fact that we so clearly don't.  But I think I am finally making peace with the concept that we are working with a moving target, tweaks and changes to the diet are just part of life and mistakes do happen.

A few months ago we got the chance to go to a special Ketogenic Diet program put on by the hospital.  Families were invited to come and meet each other and to try all the tasty (I jest) new Keto recipes and foods available.  I was very excited to attend and so was Max. I was so touched by his reaction when we entered the conference room.  His little eyes grew big and round, he asked over and over, "all these foods are for me?  I can eat anything?!?"  After repeated reassurance, I let him loose.  He worked the room.  Talking with any child or adult that would chat with him.  He tried every food, often twice.  An extremely special part of the evening was when we met another Glut 1 family for the first time.  It is hard to put into words, but it was like meeting a long lost relative.  Glut 1 kids are often described as having an abundance of charm, and sweet Miss P had it in spades.  She had a great receptive vocabulary, but was limited in her speech.  That did not matter a bit.  She was joking with us and carrying on.  

Another benefit to the Keto diet evening was the chance to talk with other neuro nurses and dietitians.  No sooner had we walked in when our regular dietitian said that she had been meaning to call us, Max's ketones were low...again.  I used the evening as a chance to get some more advice from a different set of experts.  One nurse was very surprised to hear that we did not monitor his blood ketone levels at home.  She said all of her diet families did this.  I had heard of this, but our team had never recommended it.  I checked back with them and they agreed it was time to give it a try, especially since we have had a hard time with his ketone levels for about 5 months.  Then came a KEY piece of information,  a nurse I had never met over heard me saying we had removed Ketocal from Max's diet.  She asked what fat we replaced it with.  ??  Well, we had tried the MTC oil, but stopped that.  I then was informed that the Ketocal drink box had over 36 grams of fat per serving!  How did this slip through the cracks?! It all fit together, the weight loss, the low ketones.  

Once home we got right to work fixing this quite significant error in his diet plan.  Back came the Ketocal, back came oil (just not MTC), more butter was added.  I ordered a home blood monitoring kit and the drama of family blood letting began :)  Oh the drama.  Max was non too keen on this plan.  Caroline, of course, was inthralled.  I have a whole new appreciation and sympathy for families with diabetic children.  Pricking a child's finger is not as easy as I would have thought.  Especially when they run away from you.  Somehow I managed to prick my own hand numerous times and was surprised at the volume of blood a good prick can produce.  

Slowly Max began to gain weight, but his ketones were still quite erratic.  We got orders to do the blood draws every day for a week.  We were asked to record all foods and try different combinations each day, oil, drink box, powder, different amounts of food at different times.  This was the same week as the floods, which only added to the drama of that week, but at the same time it did provide a distraction.  The results were very informative.  Timing of the food was the key, not the kind of fat involved (he just needed a certain amount of fat).  Oil verses Ketocal did not matter, but if we ended the day with 3-4 carbs left over (he only gets 10 carbs a day) and then gave him that food in the evening, his ketones were always very low.  If we fed him every 3 hours and made sure he finished dinner with only 1 carb left for a bed time snack we got amazing ketones.   

Dare we say we have finally found the magic formula...three years later...have we found it?  I won't be naive enough to think that, but I think we are closer than we have ever been to feeding Max's brain the right way.  AND we have the proof, powerful proof.  As I have written about before, Max began to exhibit OCD like symptoms centered around being clean.  It began almost over night in January.  We now look back and it is all so clear, it started not long after the removal of the ketocal and failure of the MTC oil.  When we stopped the oil we failed to replace it with another fat.  This left Max with a fat deficit of 36 grams a day, no wonder he was losing weight.  And since burning fat creates the ketones that fuel his brain, no wonder we were seeing neurological consequences.  This was very sobering and guilt inducing.  Max was really suffering.  I didn't write about it too much, mainly because it scared me.  He was so obsessed with fears about being greasy that we were often devoting at least 5 minutes of every hour to discussions of his fears.  I got calls from his homeschool enrichment teachers, we heard from his Sunday school teachers...everyone could see that something was wrong.  His team at Children's didn't realize the deficit in fat and suggested a psych eval.  Then with one butter and cream laden keto diet evening we got the clues to solved the mystery!  I am beyond pleased to report that with his weight gain and stable ketones the OCD symptoms have disappeared.  In fact, I can't even remember the last time he asked me if he was clean (okay, he did ask after a goat ate food from his hand last week, but who wouldn't?) and that is just stunning when I think back to how our lives revolved around his fears for so many months.  

Who wouldn't want to wash up after this?
Max's movement disorder has also seen significant improvement, perhaps the biggest to date.  The long elusive goal of him going up the stairs foot over foot is finally being realized.  He has also had a huge jump in his confidence.  A month ago, while at the pool, he asked to go down the water slide.  I was floored.  It was a long shoot, very fast, and I was not sure he could even get out of the trough unassisted.  I watched him zoom down the slide and hop right out.  Then to my complete disbelief he took off back towards the slide, and went up the staircase foot over foot, as if he had been doing it for years.  It was one of those moments that I will never forget and the sheer full body, smiling so hard it hurt, JOY that came from watching him is a gift I am so thankful for.

We have learned a very big lesson this fall, fat is gold, don't mess with fat.  Now with oil, Ketocal and the home blood tests, our sweet boy has been released from his greasy fears and thriving once again.  Glut 1 is a roller coaster!  The dips on the ride can be pretty scary and can last longer than I would wish, but the highs, oh the highs are amazing and so sweet.  As Max approaches his 7th birthday I have never seen him so healthy and I have never felt so full of hope.


  1. Rebecca, Thank you for this post. I pray for you and your family often. I feel the JOY in your words. The news of Max's diet and his improvement and growth are "awesome" When darkness and questions arise, God provided a diet program with other people, staff and children. that gave you light and answers to help Max heal and grow. What a time of fellowship and learning. I am so amazed at Max. I don't even go down the slide in a pool. He's such a brave little man.
    Hugs to you and blessings to you and your family.
    ^j^ Mrs.C.

  2. I'm so happy to read you have found a good combo for him!! It sounds like all is fitting into place!

    Miss seeing you! Hope to see you next week!

  3. This is so wonderful, Rebecca. What a journey you all have been on with sweet Max these past few years. It is an absolute thrill to see you enjoying such a high point in that journey right now. The slide story! Joy, joy, joy, like Mrs. C said. And what he said when he saw all the food for him. Oh, Max. I love that boy and his beautiful, marvelous family. So much.