Tuesday, April 10, 2012

Dravet Syndrome Blues

Having a child with special needs is often a blessing.  However, there are some days that are quite challenging.  The last two days have been that way for me.
I don't ever want to sound like I'm complaining so if I do...please tell me!
I want to be a voice for Dravet Syndrome...my hope is that other Dravet moms (or any mother of a child with special needs for that matter) will read this and feel like there is someone out there that understands.
So if I ever cross the line into "pity party for me" territory please know that that is not my intention and kindly let me know...okay?

Back in January we were told by a specialist in Chicago that she would highly suggest trying the Ketogenic Diet for Ben's seizures (see this post).  I was afraid she was going to say that.  I had heard about it and how hard it was to implement and that it had only about a 50/50 chance of reducing seizures to any degree.
In March we saw our neurologist here and he supported us in that idea and had a dietitian contact us.  
She said that she would send us some sample meal plans to try with Ben to even see if he would comply with the diet before hospitalizing him to initiate the diet.  She told me the four main food groups in the K.D. were:
1. Cream
2. Fats (oils, mayo, butter etc...)
3. Very little protein
4. Very little fruits/veggies for carbs

She suggested that I try and get him to drink straight cream and eat straight butter and that if he would do those two things it would make life a lot easier on the diet.  Yuck!
 I received the email with the meal plans and was shocked by the portions of these things.

Here is a sample meal that we tried last night...

Every meal she sent starts with approximately 4 oz. of heavy whipping cream.  Thankfully we can dilute it with water :)
The rest of this meal includes 2 tsp. of ham, 1 Tbsp. of cooked carrots and 1 tsp. butter.
He wouldn't touch any of it.  

Earlier in the day he had a couple of sips of his "eggnog shake" (cream, oil, vanilla, strawberries and liquid egg) but was not impressed and 1 1/2 tsp. of peaches.  That was all he would eat of the diet.
It was super hard to keep him away from the rest of the family at meal times.  He and I went in another room during dinner.  All day he requested all the foods he loves with his sign language...popcorn, fish crackers, juice...he would cry each time I told him no.  Talk about a heart breaker!

Today it was somewhat better and at the same time worse.  Better because he was eating most of the foods given, but worse because I knew he was just eating them because he was famished and I kept seeing this pitiful face looking up at me as he ate.
For breakfast he gobbled down the Tablespoon of scrambled eggs and teaspoon of peaches and drank all of the cream.
For lunch, he again, eagerly ate his 1/2 hotdog (really? I can give him a whole 1/2?) and 1/2 tsp. ketchup.  At dinner time he was super sad because he had been asking for his other foods and we had been telling him no.  I made the kids prepare their own dinner (Andy was gone to meetings) of cereal as out of sight as possible so I could prepare Ben's 1 tsp. of ground beef and 2 Tbsp. of green beans with butter.  I sat him in my lap knowing he wouldn't touch it in the high chair.  He kept crying and crying.  All day he had acted very low physically (sitting on my lap most of the day and not having much energy to play) and emotionally (he's usually so happy and humorous but today he was just glum).  He was not himself and I had wondered if he was getting sick...he kind of had the sick breath going...or was he just starving?
After much crying he finally motioned for his bowl of dinner.  I brought the spoon to his lips and he ate all of it very quickly and wanted more.  Poor kid...I couldn't give him more!  He cried again...and wouldn't drink any of his cream. 
Since this was just a trial and I was emotionally at my wits end and out of meal plans anyway, I finally gave in and asked him if he wanted 'fish'.  Oh the joy!  The minute I put the fish in his lap he was a different boy...my boy!  He gobbled down about 2/3 of a bag and would have had more had I let him.  He was smiling and making his goofy faces again.  It was night and day.

I don't know what to think...would all that be worth it if it decreased his seizures a little?  Is it just this bad at the beginning but would get much better long term?  Should we really try going the tube feeding route (as the doctor suggested) if we can't get him to do the diet orally?  Would I be able to keep up with it all?
I called the dietitian with questions but have not heard back from her yet.
I don't know if I could take the emotional strain...I know it sounds silly but it truly did affect the entire family.
Hopefully we can be led by The Spirit and counseled to do what would be best for Ben.

Not only was the diet a hard thing for Ben today but he gave me quite a scare.
I often try and situate him with something that will keep him happy when I need to shower.  Sometimes he sits on my bed and looks at books.  Sometimes he will push books under the bathroom door to me (I end up with quite a pile by the end of my shower) and on rare occasions he happily occupies himself in another room.  Today he would have none of it.  He stood at the door and cried as I closed it.  I felt terrible but he had his helmet on so I knew he would be relatively safe and I desperately needed to shower.  I heard him crying through about half of my shower.  When I realized I didn't hear him any more I figured he had calmed down and started looking at books or had gone off and found Matt.  I finished my shower and got dressed.  When I opened the bathroom door I was shocked to find Ben lying face down on the floor, motionless.  Oh no! Was this my worst nightmare?  Although I don't like to dwell on it, somewhere in the back of my mind is always the thought that I might lose my angel someday.  Dravet Syndrome has a relatively high mortality rate.  Different scenarios go through my mind randomly and I might even say frequently.  I pray that they will never come to pass but the thought is always there.  
I knelt down and calling his name gently turned him over.  His eyelids slowly opened and he hung limp in my arms.  I had woken him up.  He must have had a seizure while crying at my door that just wasted him and he lay there sleeping.  He immediately fell back asleep as I cuddled him in my arms and wept.  
I know it sounds fairly dramatic but that's how it was in my mind.
I am forever grateful for every day I have with "my precious heart"...Ben.


  1. Aimee, this post brings me to tears. How hard this must have been for you and Ben. I know just the short time I spent with him yesterday it was all I could do to keep him distracted from his continual motioning toward the pantry. And then he had a seizure. Two days in a row--wow. Bless you both!
    When you met with other Dravet Moms and the other kids weren't wearing helmets, had they grown out of the jerks, or just never had them?

  2. Oh, Aimee, bless you and Ben! Anything to do with Ben is always so tender to me and this post was extremely so...enough to make me comment (which I hardly ever do on any blog, you know). :). I've got tears in my eyes after that. I love you both so much. You are the perfect mother for Ben...you are both so lucky to have each other. I pray for you daily. I hope you find some answers about the diet. That sounds so hard...and I can't believe that that could be healthy for anyone! Love you!

  3. Hi Aimee. This is Jennifer May. I can't remember exactly how I know you...maybe we met at a Dravet mom gathering? My life has been crazy, so I have been out of the loop, but I do have your blog on my Google reader. I have a 9-year-old son with Dravet syndrome. We have been where you are now. It is so hard to make those decisions; I nearly had a nervous breakdown. Maybe I could help a little if you would like to talk. I live in Pleasant Grove. We could either meet or talk on the phone. My cell number is 801-400-0046. Take care.

  4. Hi Aimee,
    There is a Facebook support group of parents of children with Dravet syndrome. We would love to have you join us: https://www.facebook.com/groups/117762871617179/
    -mary anne

  5. Hey-I know that the diet is hard. I say in a sarcastic voice (but I really mean it) that the first three months are hell. However, the diet totally took away Cole's drop seizures, and they haven't come back. Hang in there A! You are doing the best that you can. If it helps, I have totally had those days too. Today was one of them. I went to the temple for the first time in many months, low and behold when I got out there were messages on my phone alerting me that Cole had a seizure at school. Sometimes it feels like you are just being kicked while you are down, but you always pop back up. You know that you can always call or e-mail me. HUGS!

  6. Just to give you some hope. My daughter has been on keto for 1.75 years. The beginning was tough but it was worth it almost immediately. It took about 3 months before I figured out how to get her cottage cheese, her favorite food. Now she has it in almost every meal. She also eats popcorn everyday. She is doing well and for now we have her on no meds, diet only. Seeing a few more seizures but still well worth it at this time. If you need some encouragement my email is r.reisdorf@hotmail.com. Hang in there.

  7. Bless you and and your family Aimee. Are those portions normal for this diet? Is it because they drink straight cream that you can eat 1 measly teaspoon? Babies can eat more than that!

    Good luck Aimee. I hope you find a solution that is manageable with you and your entire family.