Johns Hopkins and the Atkins Diet
August of 2004, Brooklyn had a particularly bad reaction to the newest drug we were trying. (Why does it seem like we are experimenting on our daughter?) In desperation, we contacted our neurologist, Dr. Nay, out of Denver. He had just returned from a seminar and recommended we try something very new...
Three weeks later, I found myself in Baltimore, Maryland with my daughter. Johns Hopkins was conducting a study, and looking for 20 children. The children had to have at least three seizures per week, and had to have failed several primary medications. We qualified and Brooklyn became number 13 in the study. Dr. Kossoff, the lead investigator, met with us and so began an adventure in learning and seizure control beyond what we had ever experienced.
Now, seven months later, Brooklyn is drug free. She has approximately 15 seizures per day, and we have hope that this will improve even more. The study is complete with dramatic results for most of the other 19 children (some seizure free) and we are looking forward to some official publication. Dr. Kossoff has taken what he learned from our children and is now conducting a second study - this time with 50 children.
Our journey has included the answers to these questions and more:
Is this truely an Atkins Diet?
How do we keep our growing child from losing/gaining too much weight?
How do we keep her interested in eating a restricted diet?
What are hidden carbs?
Are Atkins products okay for Brooklyn?
What are Ketones?
Do they suppress seizures?
What is an appropriate Ketone level?
What about kidney stones?
How do we manage high cholesterol?
What do we send for school lunch?
What suppliments should Brooklyn have in addition to the diet?
Where can we find recipes?
Now that the word is starting to get out, there is a need for accurate information for families that are interested in this approach. It is important to realize this is a big project, and not one to be embarked on without guidance. It is NOT a good idea to just buy the Atkin's book and start the diet. The credibility and guidance of a neurologist and dietician will help you through some expected rough spots. Of help to us has been an online community on the yahoo boards run by one of the families in the study. It is "Atkins4seizures". This group and its moderator has provided tremendous emotional support for us. It has also been a terrific place to exchange recipes, food allergy ideas (seizure triggers), etc. As with all online communities it is occasionally the source of misunderstandings and hurt feelings. It is important to remember that these are families trying to help their children - not doctors with the associated qualifications. That said, this close knit group of people are heros in this story.
Michael
Three weeks later, I found myself in Baltimore, Maryland with my daughter. Johns Hopkins was conducting a study, and looking for 20 children. The children had to have at least three seizures per week, and had to have failed several primary medications. We qualified and Brooklyn became number 13 in the study. Dr. Kossoff, the lead investigator, met with us and so began an adventure in learning and seizure control beyond what we had ever experienced.
Now, seven months later, Brooklyn is drug free. She has approximately 15 seizures per day, and we have hope that this will improve even more. The study is complete with dramatic results for most of the other 19 children (some seizure free) and we are looking forward to some official publication. Dr. Kossoff has taken what he learned from our children and is now conducting a second study - this time with 50 children.
Our journey has included the answers to these questions and more:
Is this truely an Atkins Diet?
How do we keep our growing child from losing/gaining too much weight?
How do we keep her interested in eating a restricted diet?
What are hidden carbs?
Are Atkins products okay for Brooklyn?
What are Ketones?
Do they suppress seizures?
What is an appropriate Ketone level?
What about kidney stones?
How do we manage high cholesterol?
What do we send for school lunch?
What suppliments should Brooklyn have in addition to the diet?
Where can we find recipes?
Now that the word is starting to get out, there is a need for accurate information for families that are interested in this approach. It is important to realize this is a big project, and not one to be embarked on without guidance. It is NOT a good idea to just buy the Atkin's book and start the diet. The credibility and guidance of a neurologist and dietician will help you through some expected rough spots. Of help to us has been an online community on the yahoo boards run by one of the families in the study. It is "Atkins4seizures". This group and its moderator has provided tremendous emotional support for us. It has also been a terrific place to exchange recipes, food allergy ideas (seizure triggers), etc. As with all online communities it is occasionally the source of misunderstandings and hurt feelings. It is important to remember that these are families trying to help their children - not doctors with the associated qualifications. That said, this close knit group of people are heros in this story.
Michael
posted by Michael at Thursday, April 21, 2005
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