On Thursday Ryan was on the phone with one of the parents we met in the hospital who has a daughter that is on Keto, so he was talking to him about tips and hardships of the diet. As he was talking, my phone rang and it was Marek’s neurologist from St. Louis. He started the conversation by saying that all his doctors at St. Louis (his neurologist, epileptologist and the head of Keto) have been discussing Marek’s case and they are not 100% sure that Keto is the next step we should take. But in the same breath he said that the have never had a case like Marek’s so we would do Keto and see how it works with a child like Marek. My jaw hit the ground. I was so confused since two weeks ago we were at the doctors office in a room with all three of them and they were 100% for the diet. So when did this thought pop into their head that maybe Keto wasn’t the best idea and why are they letting me know LAST MINUTE!??!
Our choices were as follows:
Option A - Start the diet which comes with its own risks (kidney stones, acidosis, cholesterol problems, GI issues etc) and then if Marek seems to be handling the diet okay in a month or two we can start weaning Sabril.
***This is what we thought was the plan all along. However, while talking to his doctor he said the reason why they are not sure about the diet is because A. Marek is doing so well and “if it’s not broken don’t fix it.” And our wish to get him off the medicine as soon as possible did’t seem so “safe” after the doctor told us that Sabril is much more effective than the diet at keeping seizures away so even if we had the diet under us while weaning Marek off of Sabril in a month there was a possibility the the seizures could come back. For those wondering why we would want him off of Sabril, the drug is known to cause developmental delays so we know he already has an uphill battle with his development because the damage the seizures did plus all the steroids we didn’t want him to have to work even harder to reach his milestones. BUT, nothing, NOTHING is worse than having the seizures come back so we listened to option B.
Option B - We “stay the course”. Marek will remain on the same dose of Sabril until December (which seems soooooo far away) and at that point we will see if he needs a “maintenance medication” as we slowly start to wean Sabril. This is all dependent on the fact he remains seizure free. If the seizures come back there only one game plan, and that’s Keto.
As I was getting off the phone with the doctors at 4:30 pm he told me that the decision was completely up to us and that they will support us (but not guide us) either way we choose and the kicker….he needed our decision by the next morning.
SERIOUSLY. Let me use my doctor degree and decide my child’s medical future in a few hours. My blood was boiling. I relayed the message to Ryan which led to a night of emotional discussions. We really felt like it was a coin toss and that either way there are negatives and positives. Our stress level was at a 10. Every time we thought we had our decision made one of us would bring up another point and we would be back in the middle again. I was so angry that us, as parents, had to make this decision. Yes, I want to be a part of every decision made on my son’s behalf but I want the doctors to be confident in the choices they put before us. I didn’t feel that they were confident in starting Keto.
After a night of back and forth, and a few margaritas to settle our nerves. We decided that if there wasn’t an overwhelming chance that Keto was to be our magical cure, then we weren’t going to put our son through it. So as of now we are “staying the course” and hoping that Marek continues to make strides in his development and the icky seizure monsters stay away…FOREVER!
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