Hot dog and Jello Diet

I finally have some good news to share!  Joshua started eating this week - yeah!  However, all he wants to eat is hot dogs and Jello.  LOL.  I guess I will take it for now as it is better than nothing.  He has hot dogs and Jello for all his meals (except dinner) and his snacks.  I continue to offer other things, but he always turns me down.  At dinner I make him sit with us and eat what the rest of us are eating (things that he is also allowed), but  he usually just sits and stares at his plate.  Although last night we had a breakthrough and he actually ate his ham and apples (weighed out to the gram, of course).  I thought I could get him to eat ham for breakfast, but alas straight back to the hog dog.  :-)

His ketones have gone down since he has started eating and were non existent yesterday which is not what we want so I had to analyze what I might be doing wrong to cause that.  After consulting with my parent support group online the consensus was he is not getting in enough fat.  So, now in addition to restricting his carbs I am pushing as much fat as I can.  I try to cook everything in coconut oil, but he refuses most of those items so I have started giving him butter instead.  As gross as it sounds, I have started to put a side of butter on his plate and he eats it straight.  I have been giving him 15g of butter with every meal and snack today and he eats it up.  The dietitian tells me that is a fine way to get his fat source in and then I won't have to use as much oil.  Until he is willing to eat more things with oil in it I guess we will have to let him eat butter.  We definitely have to get used to a new way of thinking on this diet.  I did get him to take in some oil yesterday when I gave him MAD hot cocoa and he drank it all so that was good.  All of his Jello is mixed with whip cream (heavy cream that you whip into whip cream with a splash of sweetener) and that helps him get in his fat as well.  We finally got his juice box  of his Keto Cal drinks and he is taking in some of that, however not as much as he needs to.  He is supposed to have two juice boxes a day and it is taking him about 1 day to drink 1 box.  I suppose we will get there over time. 

We met with the Dietitian again this week for a check-up.  Joshua was down 3 pounds from the week and 1/2 prior, but that was to be expected with him not eating.  His blood work revealed that he is getting acidotic which means he has increased acidity in his blood.  This is a common side effect of the diet due to the accumulation of ketones.  To combat this we were told to give him 1 full can of diet, caffeine-free soda per day with 1/8 tsp. of baking soda in it.  Additionally, he is to have 1/8 tsp. of salt per day on his food.  So, far he loves being able to have the soda and salt!  The dietitian is also concerned about him being constipated as he had not had a BM in 1 week.  She told us to start him on MiraLax once per day and we can mix that into his 1 can of soda with the baking soda.  Since we started that on Wednesday he has gone once, but it is still not enough (she wants him going every day).  I usually talk to the dietitian a couple times a week by phone and we go back in for our next check-up on June 1st. 

Joshua vomited last night all over his bed and this is a common side effect as well due to the high fat content of the diet.  I don't know if it was the fat that he had or just the fact that he had more to eat yesterday than he had in almost two weeks and his body just could not take it.  Either way, it was gross!  I hope this doesn't happen often, but I have heard it could (there is medication we can try to give for that as well if we need to).  The dietitian told me that if his constipation and vomiting continue over the next two weeks then she will probably get Joshua referred to a Gastrointestinal Dr. at Mary Bridge.  She said that is not uncommon for kids on the MAD diet.  Oh, boy - one more Dr. (possibly) to see. 

Also, this week we had a HORRIBLE time with his meds and we almost ended up in the hospital Sunday night to get his Depakote administered through an IV.  I think I mentioned they changed manufacturers on us and Joshua started refusing the new kind.  This led to a late night conversation with Dr. Korol on Sunday (Mother's Day) and a run to a 24 hour pharmacy in Tacoma to find another one.  Dr. Korol said if he wouldn't take that one we would have to go to the hospital to get it administered through an IV because he CANNOT miss a dose!  Luckily, he took the one we got from Tacoma after a LOT of prodding.  I spent the week dealing with pharmacists and finding out about manufacturers (and paying over $100 out of pocket b/c insurance wouldn't cover since we already had filled the original prescription), but finally got everything settled.  We are now back to the original Depakote and he is taking it with little issues.  Phew!!!

Our daily "medicine" routine now consists of:
1) Depakote (3 pills twice a day, served with apple sauce)
2) Zonegran (1 pill twice a day, served with a liquid due to bitter taste)
3) Zarontin (liquid twice a day)
4) Multi-vitamin (once a day)
5) Calcium supplement (once a day)
6) Baking soda (once a day in diet soda)
7) 1/8 tsp. of salt on food through-out the day
8) MiraLax (once a day in diet soda)
9) Citra K - we do not have it yet, but need to get as it helps reduce chances of getting kidney stones which is a known side effect of the diet and of Zonegran.

So, I have saved the best for last!  His seizures have drastically reduced!!!!  Yeah!  Double fist pump!  We have not seen (knock on wood) an atonic (drop) or absence seizure in over 1 week.  It is absolutely amazing when we were seeing these EVERY day.  I was told to expect an increase in seizures over the first month, but we have had the opposite experience.  One of the Mom's on my yahoo support group called him a "super responder" to the diet.  I hope it's true.  His Myoclonics still persist when he is falling asleep, but they have been drastically reduced.  He is usually under 10 for the day and often times would be at 50 before.  It is crazy!  I'm very excited, but I am cautiously optimistic as tomorrow will be two weeks and we are still very early into this.  I'm fearful this is just the honeymoon period and that they will slowly sneak back in, as that has happened when we added different medications.  For now, I will take the reduction and am trying to just enjoy, although even that is hard as I'm still constantly looking at him waiting for one to happen.  I suppose that will ease with time. 

Joshua is also acting more like himself again (well as much as he can when he is on heavy drugs).  Last week I didn't recognize him because he was so lethargic and out of it, but this week is so much better.  As soon as he started eating he began to come around.  He is only taking 1 nap a day now and is starting to play again.  I have even seen him smile and laugh a few times - the best feeling EVER!  I really was beginning to feel like I was losing my precious boy.  He has been home with me the last two weeks, but I think next week we will try out sending him to daycare to see how that goes (I will be packing his lunch and snacks). 

I also registered him for preschool today as he starts in two weeks (on June 1st!).  Our IEP meeting is next Friday (May 25th) and we will get to meet his teacher, nurse, therapists, etc. and see his classroom.  I'll be working on what I want to go in his IEP this week.  I already emailed his teacher and told her all about Joshua's condition and gave her some "homework" reading on Doose Syndrome.  :-)  Hopefully by June 1st we will be further along on the diet and it won't be such an issue.  He will only have snack there as it is only 2.5 hours so we will just be packing him a snack. 

In other, unrelated, news Cole turned 7 last week!  Chip was working so we had a low-key evening at home with just me and the boys and Joshua was pretty sick so we didn't go anywhere.  Cole was a trooper!  We bought him a new bike for his B-Day and it was sitting in the family room the morning of his B-day and he was so excited.  He rode it as soon as we got home from school that afternoon.  Cole's B-day party is tomorrow evening and it will be a few kids coming to our house for a few hours.  Cole is excited!  Also - Cole went to his support class (siblings of children with a chronic illness) and he really liked it.  I think he liked having somewhere to go that was "just for him".  He said he wants to go back, but unfortunately they don't have classes again until the fall.  But, we will for sure go back when it starts again - I think he will really benefit from it.

I think that catches everyone up on the week.  Phew! 

Michelle