Doose Syndrome

Last night Adam and I had some what of a break through.

As I said in the previous post- we have had hardly any doctor interaction. {I just called the neurologist office today to set up a consultation...they told me I couldn't see him until September! SEPTEMBER!!! My child is having hundreds and hundreds of seizures a day and I can't see a neurologist until September.}

...So after intense prayer by both Adam and I...Adam set out to research. Researching on the Internet can be both helpful and dreadfully terrifying. So we have tried to find the specific information we need and that is about it. However last night Adam went full force. He came across a syndrome called Doose syndrome also known as MAE or Myoclonic-Astatic Epilepsy. INCREDIBLE...This syndrome described our little Quinn verbatim.

I can't explain the feeling to finally read about what we are experiencing; to read about children who are just like Quinn. This past week I have felt so incredibly alone and I don't doubt for a second that this was an answer to prayer.

So the more research we have done regarding this rare type of Epilepsy... the more we feel strongly that this is what he has. Of all the children who are diagnosed with Epilepsy only 2% of these children are diagnosed with MAE. They explained that is really hard for the Dr to diagnose and many times the doctor has never even seen it.

So...I ended up demanding an appointment with the neurologist; that is on Monday at noon. During this appointment we hope to present our findings to the doctor and hope that he agrees with us and we can move forward with treatment.

Some of the key points we have learned:

- patients who have this syndrome are more likely to reject the anti-seizure medications (yes)

- many times the seizure medication will trigger more seizures and make existing seizures worse.(yes)

-The most effective way to control these seizures are through a diet known as the ketogenic diet. (yes!)

After hours and hours of pouring over this new information, Adam and I have decided and feel very strongly to start Quinn on a modified Atkins Diet. This diet is incredibly intense. It is a new way of eating but it has proven to show results and we are willing to try. About 65% of his daily calorie intake needs to be fats. 35% protein and 10% Carbohydrates. The diet is fascinating really.

The idea is this: your body naturally uses carbs for energy; you eat the food to fuel your body. This diet is specifically targeting his brain {an organ completely derived of fat} so His body will quickly be completely deprived of carbs and have to turn to a new source of energy...fats. When the body burns fats it produces a thing called ketones. For some reason these ketones are kind of like a natural anti-seizure medication. Somehow the body begins to respond to those ketones and the idea is the seizures stop.

The good thing about the diet is that it should start working quickly...like days rather than months. We will see. I know this is going to be a HUGE undertaking but I am so willing to do it. Right now he is in the other room crying for frosted flakes which have a whopping 300g of carbs. Quinn is allowed 10g per day. ...yeah this is going to be hard!

Many of you have asked what you can do...right now I need to learn as much as I possibly can about this diet which is known as MAD (modified Atkins diet). If you know anything...ever been on Atkins, you graduated in dietitian or nutrition, if you have any tips or any ideas, I am open to absolutely any advice you can think of. I have to figure out a way to feed my child with out starving him but also give him as much fat as I possibly can. And of course Quinn is the most picky eater in the world...go figure.

We are feeling hope again.

We are praying for a miracle. I know the Lord has heard our cries.