Diet Not Going So Well

Today was Day # 5 and things have gotten worse since my last post.  Joshua refused to eat completely on Monday and Tuesday and even started to refuse drinking liquids.  I was able to get some low carb hot cocoa down him twice on Monday (it is made with heavy whipping cream, oil, unsweetened cocoa, & almond milk), however after the second time he threw some of it up so I don't know how much he really got in his system.  He did not eat anything solid on Monday at all and slept almost all day.  Yesterday he did almost the exact same thing - refused to eat everything and I only got a little bit of cocoa down him before he started refusing that too.  Last night I got a little bit of broccoli down him, but he started gagging and threw that up as well. 

I talked to our neurologist's nurse on Tuesday and they told me I should have him seen by the Pediatrician right away to get him checked out due to possible dehydration and other issues.  I wanted to wait until this morning to take him in because I wanted to see his regular Dr. (Dr. Hendrie) who knows about his condition and what we are trying to do, but the neuro nurse insisted we see a Dr. yesterday and I could not get in to see her, so settled for another doc.  The other doc was not too helpful, but to tell us that Joshua was a little dehydrated, but not enough to admit him to the hospital for IV fluids.  So, I kept the appt. with Dr. Hendrie for today.

We saw Dr. Hendrie today and she said that physically he is fine other than being a little dehydrated, but not to a dangerous level where he needs to be admitted yet.  His sleepiness and lethargy is all due to him not eating and getting into a ketosis state (she assumed he was because he is not eating) and ketosis is what we want him in to reduce seizures.  Dr. Hendrie encouraged us to not give in and give him what he wants (his regular food) as he is physically okay and she thinks he is just doing a power struggle against us and she has never seen a kid starve themselves before.  Basically, she thinks he will eventually start eating.  But, how do we keep him safe in the mean time?  Well, push the fluids and she wants me to give him Glucerna which is a drink supplement for diabetics so it is low in carbs and has nutrients, vitamins, calories, etc. that can sustain him.  So, I picked the Glucerna up today and at first he refused.  But, my Mom got him to drink about 1/2 of one bottle this evening so that is a start!  My Mom also got him to eat 1 tsp of peanut butter and two small slices of a banana.  We stayed within his carb count for the day so we were okay and he ate just a little.  Perhaps this is the start?  We'll see what tomorrow brings.  I have to check in with Dr. Hendrie every day to report his status so she knows if we need to bring him back in for evaluation or admit him.  I'm doing everything I can to avoid having him admitted to the hospital for IV fluids and tube feeding.

I also talked to his neurologist today and she was supportive of us continuing on this path as he is not in immediate danger and she thinks the rewards will be worth it.  She is also going to check in with us every day to monitor his progress.  The Dietitian wants us to get his blood drawn tomorrow so she can check everything out so another trip to Dr. office tomorrow (will make 3 in 3 days).  Unfortunately, I am getting used to these types of weeks. 

There is some good news.  I think (stress the think) that Joshua's seizures are already reducing due to him being in ketosis.  We have not seen an Atonic (head drop) since Monday and we only saw one that day and one on Sunday (we typically see 3-5 of those per days).  We have seen less absence (staring) seizures as we only saw 1 today.  Also, his Myoclonics seem to be reducing.  Typically at night he will have 30-40 of these and last night I only counted 11.  Chip said when Joshua fell asleep with him today he did not count any!!!  I didn't get to count tonight as Joshua fell asleep in the car, but I will check tomorrow night.  I am trying not to get too excited by this as it could be a coincidence or we could see it go back up when he starts eating or it could be short lived, but it is hard not to think about the possibilities if this really does work.

The other bit of good news is that we know Joshua is in ketosis as I bought ketone strips at the pharmacy and when he finally went pee tonight (only time all day) I was able to get a sample.  The strip showed that he was in ketosis.  Of course, him not eating is NOT the way we want him to get in ketosis, but it shows that when he is in ketosis we can see some reductions.  So, this gives me hope that this path is worth continuing on despite how unbelievable awful the last several days have been.  I really want to push through as I feel something good will be on the other side.  I just hope Joshua will start eating and we can get into ketosis the correct (and healthy) way. 

I knew this diet would be difficult and we would have our struggles, but I did not expect Joshua to completely shut down and stop eating.  This has been harder than I thought it would and watching him be hungry, sick, have stomach pain, be so lethargic he can't play, sleepy, etc. is sooooooo hard!  I don't want to fix one problem and create another one, but I am trying to have faith that we will get there and it will be worth it in the end.

Thanks everyone for all the support - I really appreciate it!!!