Officially on Ketogenic Diet - Love the Swedish Team

Last Monday (10/29) we had our consultation appt. with the Keto team at Swedish Medical Center.  Holy Cow - we love them!  Our appt. ended up being 3 hours and they were not even trying to kick us out after all that time - they were generally interested in every aspect of his care and getting things right. 

We went through all of our history with them and to my surprise they were very impressed with everything we had accomplished, especially since we were mostly on our own.  They must have said this about 5 times - it was nice to hear we were doing something right.  We then talked about exactly what we were currently doing on the diet and as I figured they told us we were already doing Keto (we kind of switched him over right after the keto conference) and so there was no need to admit Joshua to the hospital (yeah!).  But, they felt like we had a LOT of room for improvement in order to get Joshua seizure free.  The most awesome part was how supportive, positive and encouraging they were - they actually were saying things like "seizure freedom" and "medication freedom".  Ahhhhh - music to my ears!!!!  They approach Keto from an entire team approach so we had 3 people in the appt. with us and the team was able to make all of the decisions without consulting someone else.  I was impressed right from the beginning.  They laid out a few changes they wanted us to implement immediately.

1) Change Joshua's med (Zarontin) from a liquid to a pill.  The liquid is full of sugar and so he is getting a LOT of excess carbs so no matter how disciplined we are on the diet he is never going to get fully there.  She wrote the order for the new med and sent to the pharmacy immediately.  She said making this one change alone with increase Joshua's ketones a lot and we should see a difference.

2) Create meals for Joshua that do not include heavy cream to drink or whip cream to eat.  He is starting to refuse to eat these things so he is not getting in all his calories, causing him to be hungry and cheat.  So, they want us to give him meals where the fat is all inclusive of the meals.  So, I thought how are we going to do that?  Well, they said they would send me the recipes!  What?!?!  I couldn't believe it - awesome!

3) Start using MCT oil in his meals.  This oil is tasteless and orderless and so it can go into a lot of meals, but you can't cook with it.  Coconut oil is 50% MCT oil and so switching to MCT oil directly will give us 100%.  We have to give it to him slowly to get him used to it (15g per day at the most in the beginning), but  we will increase over time. 

4) Try a new calcium powder to put into his drinks for his calcium supplement because he won't take the calcium we currently have (we crush pills and put them in his drink).

5) Add 1/4 tsp. salt substitute daily for potassium supplement.

6) Try new multi-vitamin as he has started refusing his sugar free Scooby Doo vitamins.

7) Stop giving him water with Mio flavoring in it as they don't know how many carbs is in this, even though the label says zero (can be hidden carbs).  Also - never use Crystal Light.  Instead, they want us to give him Fruit2O which has no carbs.

8) Change his meal plans from 3 meals and 1 snack per day to 3 meals and 2 snacks so that he eats more often.  They think this will help him with hunger and help to keep him from cheating. 

9) Keep his ratio at 3:1.  Since we are currently having compliance issues with him refusing fat and cheating they think that will only increase if we push the ratio higher so for now we are going to stay at 3:1.  They also think we have a good chance of reducing his seizures just by making the changes noted above and if we get his cheating stopped and that perhaps we won't need to increase it - we will see.

I talked to someone from the Swedish Keto team every day this week either via email or phone or both and their responsiveness has been outstanding!!!  I even got a call from the woman who runs the program Friday evening at 7:30 PM to check on us to see how we were doing on the new plan - I was shocked.  The dietitian sent to me yesterday his new plan with 12 new recipes to try over the weekend - I couldn't believe the amazing support.  So, I went shopping last night and bought everything we needed that we didn't already have for the 12 new recipes.  We spent 2 hours cooking last night so we would be ready for today.  We had some recipes he liked (success - yeah!) and 1 he didn't like it.  The meals are all-in-one meals with no extra cream to drink or eat so that is helping.  He had a rice krispy peanut butter ball for breakfast this morning and LOVED it!  Even Cole was super jealous saying that Joshua got to eat dessert for breakfast - yep!  :-) 

We have been making all the requested changes this week and have been successful in getting his new med down him the last 3 doses and already his urine ketones have gone up!  It is amazing how watching a little stick turn purple can make you so happy.  I was feeling overwhelmed last night with all the shopping and cooking knowing we would be gone all day today and so I had to get everything done at once, but I feel like it was so worth it.  I will be doing more cooking tonight, but it will be so worth if it he turns out to like some of them and has an easier time sticking to the diet. 

The Swedish team also wants to have all his blood work done prior to our next appt. so we will be getting his blood work done around Nov. 14th as our next appt. is on Nov. 26th.  Check out the below list of what they will be checking when they draw his blood (they watch keto very closely!).

Labs to be drawn:  CBC, Ferritin, BHB (blood ketone level), Carnitine, Comprehensive Metabolic Panel, Magnesium, Copper, Phosphorus, Lipid Profile, Vitamin D, Selenium, Zinc, Folate, Vitamin B12, Uric Acid, Urinalysis, and his medication levels for both Zarontin and Zonegran. 

Swedish also talked to us about genetic testing which we have not had done thus far, so they are going to get the required paperwork completed to send us for genetic testing.  They will be testing for Glut-1 deficiency, but some others as well, but I can't remember all of them right now.  Genetic testing always makes me nervous because on one hand it would be nice to know if there was a cause of his epilepsy, but on the other hand, what if it was a gene we passed onto him or one he could give to his kids?  It might be bitter sweet finding out an answer, if we got one at all.  But, we will cross that bridge when we get to it. 

We also talked about his next EEG and they want us to make all the changes we discussed and then have another EEG done so probably some time between now and the end of the year is what we are thinking.  I talked to his neurologist and she is interested in doing another EEG as well so we can see what is going on in there since starting the diet (his last EEG was in April prior to the diet).  She wants to do another 48 hour EEG so we will be back in the hospital for a couple days, but hoping this time we will see a lot of improvement on the EEG. 

We also had an appointment with his neurologist this week and spent almost 2 hours with her.  She is extremely supportive of what we are doing and is learning along with us all the effects of the diet has on everything else.  We are talking about the possibility in the future of starting to wean him off the Zarontin and increase the Zonegran, but we will wait to make that decision until after we see his next medication levels when we get his blood work completed.  We also talked about having Joshua go back to see the neuro psychologist in the next few months to get a new assessment completed and see where Joshua is at cognitively.  He was so out of it when we tried to have the assessment done last time it wasn't really reliable as he would not sit through all of the testing.  I'm curious to see how he would do now since his attention span has improved and he is doing a bit better with learning.

Overall we are feeling very positive that we are working with the right team on the diet and that we have room to improve and therefore, a lot of hope that we can get him seizure free.  He is still having Myclonic seizures every day so we are hoping to knock those out! 

Thank God for the ketogenic diet - I truly believe it is saving Joshua's life!