Tuesday, December 15, 2009

Email to The Teacher

Hi All - Here is the email I just sent to Noah's teacher today..... It's a first for us but I know it was the right thing to do. Maybe I'm making him feel different by allowing him not to go to school on Friday. Who knows? I just think that if it was me............it would be crappy to have to sit watch all of my friends eat their holiday food and talk about their family holiday food traditions. I hope I didn't over react.... Any thoughts?

Hi Teacher (name changed to protect the innocent - hee hee)-

Both Bryan and I feel like the focus of the
Winter Holiday Breakfast on Friday is going to be over-the-top too difficult for Noah. We just can't focus on the "foods" of the holidays with him. We cannot adjust his meals to accommodate the timing of the breakfast and he cannot snack in between his meals. We don't want to bring in a "Special Food to Share from our Holiday Tradition" because we purposely downplay those food traditions in our home. He has begun to see how "different" his buddies eat at school which makes it even harder for him to listen to every child talk about the traditional foods their families eat and watch everyone sharing those foods with each other except for him.. We have spoken with him and given him the choice of whether he wants to be in school for Friday's Breakfast or stay with me. He wants to stay with us. He won't be in school on Friday at all. I hope you understand how really hard it is for Noah and for us, when it comes to these situations. He is such a trooper about it every single day when it comes to his Diet.


Thursday, December 10, 2009


I just met with Noah's first grade teacher....Can I just sit and cry for a minute? I feel frustrated today.....and sad.........and discouraged!

Last year Noah met several times a week with the resource teachers to provide additional educational and language support. At the end of the year, to my surprise, those great teachers informed me that Noah no longer qualified for extra services. His grades and his one-on-one resource testing showed scores higher than what he needed to qualify for those services. I was more than upset. I knew he would need support this year or he would begin to slip down the ladder of academia.....
Overall...something is missing for Noah. He does well one-on-one. But throw him into a classroom situation and apparently things are not going well. He wanders around when he should be in his seat. The teacher will sit with him and give him instructions. As soon as she walks away, he will just sit there and look around. He can't remember or chooses not to remember all of the instructions.
I think there are a few things happening....1. He is cute. He is the size of a 3 year old and the girls love that cute little face. So they help him like a they would help a toddler. He will "let" them do his schoolwork anytime. 2. TOPOMAX (dopomax) - causes short term memory issues, word finding issues and slows processing time. 3. Slower processing + short term memory issues = inability to hold long stretches of instructions, story content, etc. resulting in behavioral issues.
Not only is all of this going on but Noah is young in his life experience. He basically missed two years of his life due to seizures. He never experienced all of those environmental influences that a 3 & 4 year old experiences. He can't make the natural learning leaps and cultivate new first grader ideas because he missed those times.
For example - he still draws stick figures. Actually, he has added a body now. But, still no neck. Most first graders notice what others are drawing around them, make the connection with how they are drawing that figure and begin drawing more of a body with neck, arms, legs and feet. Noah is still drawing chicken type toes. Unless someone tells him how to draw a body and draws with him for a while, Noah will just continue on with his stick people.
I realize that I can no longer depend on the school to test and evaluate and help Noah. But you know what? I was hoping they could at least tell me what specialists I need to get him in to see. We have a great school. With great specialists. But they are overloaded and it'll be until at least the end of January before their evaluations are done and Noah receives additional help at school.
I know he needs to have an Auditory Processing Disorder evaluation done. He has to be 7 yrs old for that test. Waiting until February.....
What else? What specialists does he need? What help does he need? Where can I turn? I am sooooooo confused....
Excuse me while I sit in my corner and cry for awhile....
Thanks for listening.

Friday, November 27, 2009

To Play or Not To Play

So..... here is the question..........do I let my Keto Kid play while the rest of us sit down to a meal OR do I make him sit with the family at the table.....while we eat.......and he doesn't...........??? I know it sounds like the answer should be an easy one. Right? Of course you wouldn't force a Keto Kid to sit and watch other people eat their food!!! But, as usual............I have a few more thoughts on this question.

Here is how it all began...Yesterday, at Thanksgiving Dinner I wished I had taught Noah to come and sit with the family for some of our meal. I wanted him to pray with us, listen to the conversation, laugh with us and be around the family Feast table. How selfish am I? I wouldn't want to sit around a table and watch my family feed their faces with food that I can't even eat.

First of all, Noah's afternoon meal falls at 3:45pm. The large family dinner didn't happen until 5pm. It wasn't at my house and I wasn't in charge of dinner. So, the timing wasn't my choice. My family, all 14 of us, sat down and joined hands in prayer. I really wanted Noah to join us but he was nowhere close to the dinner table at the time. My husband and I were tucked on the back side of the long table with virtually no way to inch ourselves out to go over and get Noah to come and pray with the family. Not only that..............Noah was being a fusser boy!!! He put sunglasses on and began giggling during the family Thanksgiving Prayer offered by my 90 year old grandfather. Although I really should have been listening to the prayer, I was laughing inside about how funny Noah was acting and torn because he should have better manners than to be so silly at dinner. Soon after the prayer was finished, Noah kept calling loudly to me, to my husband or to his grandpa - Over and over and over!!! Such a buggin' boy sometimes! My husband and I kind of zoned him out and tried not to acknowledge him after we had told him we would help him after we ate. But apparently it really bothered my step-Mom and she kindly set him up with some legos. That occupied him for a bit but still.....part of me really wished I could have incorporated him into the Thanksgiving Feast a bit more....

There has to be some balance with teaching Noah table manners during a large family event, requiring his participation in the non-food moments of dinner while at the same time respecting his need to not sit and watch everyone else feed their faces. I didn't manage it well this holiday... guess we'll figure it out for Christmas!!!

Love my Keto Kid!

Monday, October 19, 2009

Quick! Hide the Drugs!!

A parent of an epileptic child has to be great at disguising meds to get their kiddos to take them everyday!. It's unbearable to fight day after day to get your little one to take their meds. Unfortunately, Keto Kids can't have the sugary yummy kind of meds that children on a normal diet consume. Keto Kids' meds tend to be bland, powdery and some are a bit smelly.

Hiding meds can be tricky! At eight months of age, Noah began on Phenobarbitol. At one year of age he had been switched to Depakote. Six months later, Noah began 18 months of Keppra eventually transitioning to Topomax. At one point, Noah was on an all-in-one supplement powder (Nano VM)that had to be mixed in water. It had a gritty texture and the flavor wasn't any better. He currently takes many many supplements, which have been challenging in their own way (Polycitra, 500mg Calcium tablet, KPhos Neutral tablet, LevoCarnitine, Bugs Bunny Sugar Free Vitamin and one brazil nut each day - a total of 11 pills per day + the liquid polycitra).

Here are a few ways that we have hidden meds over the years in order to get Noah to take them everyday...........
  1. Open Depakote Capsules - Sprinkles in mouth - Juice (keto friendly) chaser to wash it down!
  2. Before the diet - Depakote sprinkles in applesauce.
  3. Tablets crushed - hidden in applesauce, ice cream, yogurt (keto friendly and also before keto)
  4. Nano VM - undisguisable!! We ended up just pouring the powder in his mouth and chasing it with juice! Dropped it later because it didn't work for him.
  5. Keto friendly - Crushed tablets mixed in with oatmeal.
  6. Infant - liquid dispenser forced into the very back of their mouths. Followed with milk sippy cup
  7. Keto friendly - Peanut Butter/butter mixed with crushed tablets
  8. Before diet - Crushed Fruit Loops/Trix/Fruity Pebbles mixed with crushed tablets and eaten with a spoon in dry form.
  9. Keto friendly - crushed tablets mixed with smashed strawberries on top of Keto Cheesecake
  10. Keto friendly - Scrambled eggs with butter and smashed small bits of tomato (like salsa). We crush the tablets, scatter them lightly on top of the eggs but under the butter and tomato.
Hopefully some of these ideas can help you in disguising the meds for your kiddos! It's tricky! It's not fun to fight this battle either! But, again, it's one of the many battles we choose to fight to help out our Keto Kids!

Some good news...........Once Noah hit 5 years old, he began taking all of his meds like an adult! No more hidding the meds.

He pops pills better than I do now! Yikes!
Have a sunny day!
I love my Keto Kid!

Tuesday, October 6, 2009


I am now pledging to change the face of epilepsy. As a result of the frustrations that I faced daily and the lack of information available, I have created a place–which I hope will become a community–where you can learn about epilepsy, share stories and ideas, and offer support to others facing this debilitating, often chaotic, disorder. Erin Leyden, Co-Founder & President of Epilepsy Outreach

I had the pleasure this week, of talking with Erin Leyden. Erin and her husband, Patrick, along with Patrick's sister, Anne Marie Clancy Co-Founded The American Epilepsy Outreach Foundation. (http://www.epilepsyoutreach.org). They were determined to help other families whose lives had been turned upside down by seizures and create a supportive place in which those same families could become educated about epilepsy. Their son Emmett's life was touched by epilepsy when he was 2 ½ years old. His story is beautifully documented on the organization's website. I was in tears viewing it. I was touched by the openness with which they shared their experiences. I am so grateful to have had the chance to talk with Erin and learn more about the Epilepsy Outreach Foundation.

The American Epilepsy Outreach Foundation “is committed to raising the public’s awareness of epilepsy through advocacy and education” as well as to provide support to family's whose lives have been impacted by epilepsy. They have done an excellent job of providing a vast amount of information on epilepsy through their website, sponsoring fundraising events (Annual Change the Face Race), providing access to professionals for answers to questions about epilepsy and providing resources to assist and support families facing lives with epileptic challenges. In fact, Epilepsy Outreach will send a Ketogenic Starter Kit to new Keto families upon request. The Starter Kit includes a digital scale, a general list of acceptable Keto foods, a binder, spatulas and some Keto friendly food samples. To request a Ketogenic Starter Kit, contact the Outreach Foundation from their website.

How can you get involved with Epilepsy Outreach? How can you help them educate the world about epilepsy? Go to their website, click on the “Get Involved” link at the top of the page and choose one of the many different avenues available to connect with this amazing foundation! You can enter your child's story, which like Erin's, could help other families that are searching for support. The website offers brochures and posters that will help in your effort to educate your family, neighbors and teachers. FACES (Friends Accepting Classmates with Epilepsy and Seizures) is also available through the website by request. It is a 45 minute presentation given to 5-8th graders, teachers and staff educating them on epilepsy and basic first aid for seizures. Please drop by the site, read up, educate yourself and get involved!

Most recently, Erin has been working diligently on their next fundraising opportunity for Epilepsy Outreach! On Thursday, November 5th, at The Providence in New York City, the Epilepsy Outreach Foundation and the Lennox Gastaut Syndrome Foundation will be hosting a Helmet's for Hope Gala!


If you're anywhere in the area, this Gala is a “must do!” The night will include a cocktail hour with hors d'oeuvres, and a sit down dinner. Celebrities and professional athletes will be in attendance as well as a fun auction which will include autographed helmets from professional sports teams. I can't think of a more beautiful evening or a better way to contribute to the Epilepsy Outreach cause. Make sure to stop by if you are close to NYC in November. (Wish I could be there! Erin - We need to set one of these events up on the West Coast!!)

Lastly, Erin wanted to get the word out about connecting your local epilepsy support groups with the Foundations website. Please contact Epilepsy Outreach and give them the information for your local epilepsy support group. A link will be added on the Outreach website that will enable others to find and attend your local group!

Our passion is real, our eyes are open and we are willing to change the face of epilepsy. Journey with us on this most worthy cause.” Anne Marie Clancy