Thursday, November 3, 2011

Baby monitors, pull ups, and child locks...

Ben had a tonic clonic (grand mal) seizure this morning just as we were about to walk out the door.  It lasted for about 2 1/2 minutes.  He had his usual shaking and stopped breathing for about half that time.  Then it seemed to slow down and he started to moan and talk as he sometimes does.  But this time it was different.  His moaning became very loud and his face was distressed.  He normally has no facial expressions during the seizure, but this time it was clear that he was feeling pain or fear - but maybe he wasn't.  Maybe this time the seizure just triggered something new that we haven't seen before.  Either way, it was difficult to watch.


Later on this morning, he had one myoclonic jerk.  This is when his arms will jerk up towards his head and he will often fall straight backwards.  This is the first one he's had in several days - almost 2 weeks in fact.  We are hoping not to see an increase in these because we'll have to put the helmet back on for his protection. 

Thankfully, he didn't have a seizure during his nap today - that's a first for the whole week.


Dr. Perry's office called today to give us a date for the ketogenic diet.  We will go into the hospital on Dec. 13 - 16th.  They told me that in preparation for the diet, I should put child locks on the cabinets, pantry, and refrigerator.  This is because he won't have free access to food once the diet begins.  It will be imperative that he doesn't cheat.  He will not be allowed to snack or graze so they've asked me to limit his snacks in between meals and start cutting out unneccesary carbs. 

This diet is a medical diet that uses a 4:1 ratio for calculating food intake.  It is highly calculated - to the gram.  Everything will need to have 4 times as many fat grams as carb or protein.  It is 80% of the normal caloric intake recommended.  No one knows why it works, but in 10% of patients it will stop the seizures completly.  In about 30% of the patients, there will be a big improvement - some are even able to get off some of the medications.  (We will probably get off topamax because it is known to cause kidney stones and the diet is prone to developing those as well, so they will probably take us off that one altogether).

In the hospital they told us that a sample meal would be 4 grams of chicken, 2 grams of applesauce, 3 grams of ranch dressing, and 8 grams of butter.  When you think that a paperclip is about 1 gram, that's not a lot of food.

This diet is not without it's complications.  We will have to test his blood sugar regularly.  We will have to test his urine daily to make sure he remains in ketosis.  It will not give him enough of daily vitamins or nutrients, so we will have to use a vitamin supplement.  He will also have to use something to help his stomach deal with all the fats.  They told me in our last stay that he would probably not grow while on the diet.  We have to make a minimum 3 month committment, but she told me today to plan on being on the diet for 2-3 years.


So this brings me to the title of my post...baby monitors, pull ups, and child locks...

When Ben goes to sleep, we start him off in his own bed, but we have to use a baby monitor to listen for seizures.  We've had to start using pull ups because the seizures and meds are causing him to have accidents every night.  And now we have to reinstall baby locks to 'child proof' our kitchen.

It's hard at times to see my child moving backwards.  I never imagined we'd have to budget for pull ups again, but this has become our reality.

There are a lot of emotions right now, so this post may not even make sense.  But there are a few things that I know for sure:
  1. Kids are more resilent than we often give them credit for.  The things I will cry over as we start this phase of the journey (like no Christmas cookies) may not even bother Ben.
  2. I've read numerous success stories on the internet about this diet.  I've read numerous times, "The diet is not any harder than watching your child have seizures."
  3. The timing is probably a blessing - Leeon and I will have the Christmas break to learn how to adjust to a completely new lifestyle.
  4. We only have to think of this as a 3 month trial.  If it works, we'll want to continue it.  If it doesn't, then we can stop.  I can't focus on the 2-3 year window right now.
  5. God has already gone before us to prepare the way.  He will be with us each step of the way.
  6. Ben's disposition will help him - he is just like his daddy!  :)
  7. Our families and friends will be right there with us - helping as needed.

It feels good to have a date.  I feel like I can focus better at school and at home knowing when this will start.  My prayer is that while we wait for December 13th, the seizures will not spiral out of control. 

Thank you for continuing to pray for Ben's healing and for wisdom and peace for me and Leeon.

3 comments:

  1. Laurie, Our whole family is praying for Ben and for both of you. Since you wrote about music in an earlier post, I wanted to share a couple of songs with you. Here's a link to a beautiful song by Laura Story called "Blessings."

    http://www.youtube.com/watch?v=1CSVqHcdhXQ&feature=youtube_gdata_player

    I've also been personally comforted by the song "Beauty of Your Peace" by Tim Hughes. I'll try to find a link to that one, too. Love you guys.

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  2. Continuing to pray. Last night we had a healing service and I stood in for Benny, believing for a miracle in his life.

    Until then, on this site http://www.kristinorthup.com/index.php?id=24 you can download Kristi Northup's CD--The song Cover Me is soooo powerful and really ministered comfort to us.

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  3. I am very excited about the ketogenic diet! I have been and will be praying for your family. It all sounds exhausting! Do not weary in doing good!

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