1 Week on MAD

We have made it to the one week mark.  Joshua is still not really eating and is very lethargic/sleepy.  I can see he is making very little strides, but it is not much.  Yesterday he had 2 bites of eggs, 1 PB ball and 3 little slices of apple.  Today he had 1 little mandarin orange slice at lunch and asked for a string cheese.  He ate a little of the string cheese and then spit most of it back out.  For dinner he had some green beans, but then spit most of it back out.  I don't know how much he actually ate.  I am taking it as a good sign that he is at least picking up his fork and eating a very small amount. 

 The Dietitian told me to make him something at every meal even if he says he doesn't want anything and I should bring him to the table and make him sit with us even if he does not eat anything.  And, she told us to STOP talking about food!  I have followed those two things and I think it is helping.

He is drinking which is good.  He is having some Glucerna (low carb drink suggested by my pediatrician) and the PowerAde Zero.  He is urinating 2-3 times per day which my pediatrician said was okay.  I have checked his ketones every day and they are in the 80-160 range which is where we want them.   

The most amazing thing is that his seizures are going away before my very eyes!!!!  We have not seen a drop attack since Monday afternoon and haven't seen an absence since Wednesday.  His Myos are still happening, but drastically reduced from about 30-40 (at bed time for example) to an average of about 11, but last night was only 4.  I can hardly believe it!!  With every passing day I begin to think this is not a coincidence and this could really work. 

But, I have to get him to eat.  I don't want to give up and am not going to, but don't know how long docs will let me continue on in this manner (so far they have been great).  My neurologist even gave me her home # last night as she was worried about me getting a hold of someone if he got worse over the weekend.   I am lucky she is our doctor.

I am delighted by the seizure reduction, but unbelievably frustrated with the food intake.  Apparently we have one stubborn boy! 

And, just to add insult to injury, we got a new type of Depakote (pharmacy changed manufacturers) and he hates them!  He has started spitting them out and we have tried everything.  I know he got barely any of his night time dose tonight.  I'm a bit freaked about that as you are not supposed to stop taking the meds and I don't his seizures to increase.   I am thinking I need to find a pharmacy that uses the same manufacturer that my pharmacy was using before, but I probably can't do that until Monday.  I am not sure what to do in the mean time.  I really wish we could catch a break!

Michelle

P.S.  Happy Mother's Day out there to all of the wonderful mothers I know.  And, a special thanks to my unbelievably awesome Mom who has helped us out tremendously over the last several months by coming to my house multiple times a week to help us.  I love you, Mom!