We called Cook Children's Hospital today because I am ready for her to start the Ketogenic Diet. My husband is ready, too but wants to wait a few months to exhaust one more option first. Topomax.
We spoke with Dr. Coleman and let him know that Cook's said the earliest available we could go down to start the diet would be August. He said that we aren't out of options as far as medications go, to try meanwhile. He said that Topomax would be the perfect medicine to start now because if it works we can cancel her Keto appt and if it doesn't then we have to stop that medicine when starting the diet anyway.
With the Keto diet, Rayleigh would still be on medicine throughout the course. If the diet controls her seizures she will be on it for 2-3 years. The Ketogenic Diet is a high-fat, low-carb, moderate protein diet... a stricter Atkins Diet. It teaches the brain to burn fat rather than food which uses the Ketones. Other than that, scientists don't know why it works... just that it does. Rayleigh pretty much has a 1/3 chance of success with the diet.
We start Topomax tomorrow or the day after (depending on the pharmacy). She will start with 1 capsule a night for 5 days and then 1 capsule twice a day for 7 days. We are to call her neurologist back in 2 weeks to report how Topomax is working. If it isn't we'll simply stop the medicine then.
In other news, Rayleigh now sits by herself for a minute or 2 at a time. Enjoys tummy time much more. Holding the bottle all by herself everytime. Stands at the table using her hands for a couple of minutes. AND takes a couple of steps when I hold her up by her arms!!! Yay physical & occupational therapy!!
So Proud of your little Lady bug! Fingers crossed and many prayers for the new medicine! Hope this new medicine gives you all answers you need to control the seizures! LOVE YA LADIES!
ReplyDeleteI'm so glad I found another mom who is going through the same thing I am. My son was born on May 25th and has been in NICU for the last two weeks so we can control his seizures. Phenobarb was working the first week and he was discharged only to have a seizure a day later. Now he's on Keppra 75 mg 3x a day and he's still having them so the neurologist may add Topomax tomorrow if his seizures don't stop. Keeping my fingers crossed that this will work for both our kids. Thanks for sharing your story!
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