Saturday, March 10, 2012

Give me Diet over Medication for seizures any day!!!

Dante enjoying the start of the MAD diet
This past week was yet another transitional week for Dante.  We have been on a strict Modified Atkins Diet for his seizures for five weeks already, and the news are good!  Now let me set the stage for where we are at…

By the third week on the diet Dante seemed to be getting weaker.  He was slumping forward sometimes while sitting or remain like that after a “nod” seizure for a little bit.  This symptom reminded me very much of how he did while on Topamax (which we weaned him from a couple of months ago), so I started associating it with his Keppra, the only medication he’s on at this time.  Since the diet works like a medication, as it becomes more effective the seizure medications the child is on may actually become excessive. Last weekend I decided to test this out.  I reduced his nighttime Keppra dose very slightly, by 12% (from 5ml to 4.4ml).  The following two days we saw his seizures go down by more than 50%. 

But I already knew that weaning Keppra is a little more complicated than that.  I’m part of a Yahoo! Parents group for the diet and I have learned from them how difficult weaning Keppra can be.  That is why I took it down by just a little bit.  During the first five days after lowering the Keppra, Dante was on an emotional roller coaster.  He would cry periodically in ways he doesn’t usually do.  He had a few stronger seizures, but thankfully nothing like we had seen while on Topamax.  His seizures dropped by 50% the first two days (to ~8-9/day), which I took as a good sign.  Then the next three days, his most emotional days, they were basically twice that number (~17-21/day); then they went down again (~7-11/day).  What is very telling to me, though, is that Thursdays are usually his worst days, when he is the most tired from the week.  In the past he’s had over 50 seizures on a Thursday.  This week he had 7.  Needless to say, this week has brought us a lot of optimism for Dante and his seizures.

I got the wonderful news on Thursday that Dante went straight to the bicycle in gym class, wanting to ride.  He spent over 20 minutes riding the bike and kept his feet on the pedals the entire time.  They actually Velcro the feet to the pedals but Dante had never kept them there.  He has never pedaled in his life.  Somehow, he is either allowing the pedals to move his feet or he’s pushing them himself, but the fact is that his legs are doing the pedaling action – for the first time ever!  He did this again on Friday.  He worked very well and had “awesome” days, all this with less medication.  I am very happy.

Please keep Dante in your prayers as well as all the special children and the parents and helpers that support them every day.  I hope to be able to continue bringing more good news in the future…

3 comments:

Janice said...

Oh, wow. This MAD diet is really working. So wonderful that you have been able to decease his medication and have the support of a parent's group for the MAD diet on how to safely to do.

Wow, wow, wow! And, he's learning to pedal too! Sounds like you guys are definitely on the path with the MAD diet.

You, Dante and your family are always in my thoughts and prayers.

Lucia Alonso said...

No cabe duda que dios es tan grande! El esta mejorando la salud de Dante y la de alex!!! Me da enorme gusto leer buenas noticias de el, y espero en dios sigan legando mas :) resare mucho por el amiga!

ilovequeenanneslace.com said...

My thought and prayers are with you always. God bless all of you. Will be praying for more healing with the diet. Keep going lady you are doing an awesome job! :)