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Tweaking the Plan: A Neurological Update on Maggie

Maggie had three appointments yesterday: Neurology, Dietitian, and Behavioral Therapy. Based on the outcome of these appointments, we’ll be tweaking her current treatment plan with potential next steps if her seizures don’t improve. All of her appointments were virtual.

Maggie started the keto diet in August and she showed immediate positive results. Her seizures went down from ten a day to three. In other words, she had a 70% reduction, which is a very positive outcome after the first month. Sometimes the keto diet takes a few months to take full effect. She had been taking four medications for too long, and we were eager to begin weaning her off. We imagined optimistically that she would be seizure and medication-free in a few months. Because of her positive response, we weaned her off of one of her meds. Perhaps we were too ambitious too soon. The wean led to an increase of seizures, up to about seven a day. I periodically send updates to her neurologist about her seizure activity. He was concerned about the increase and asked that she restart the med that we weaned.

Her response to restarting that medication was dramatic. Adding the medication did not alter her seizure frequency. Instead, it altered her mood tremendously. When she first got diagnosed and we needed to introduce medications, she would fight us. We had to come up with ways to get her to take it, like mixing it with her drink or slipping it into her food. For the last year or so, she has taken it with minimal fuss. Now, it was an outright refusal. Head-shaking. Kicking. Crying. She was upset and angry all the time. She didn’t want to do anything that she previously enjoyed. Worst of all, it didn’t reduce her seizures. I contacted her neurologist, explained the situation and he agreed that we should stop that medication altogether. Within a day, Maggie had a Jekyll/Hyde response. She was back to being our giggly, playful little girl. Her seizures remained around seven, which is too high.

What we would want, of course, is Maggie to have no seizures. That may not be a realistic goal, at least not at this time. What we’re hoping for now is that she’ll drop down to about three a day again. Instead of introducing anything new, we’re going to tweak her current medications. She’s switching from a liquid to the tablet form of one of her meds, which is a marginally higher dose. If that medication change does not reduce the seizures, she’ll add another tablet of a different medication that she’s currently taking in two weeks. If that still doesn’t do the trick, when we have our next follow-up in March, we’ll need to discuss whether the keto diet is effective to continue and the possible addition of an entirely new medication.

It is a little disappointing that this is the conversation we’re having today about her treatment plan. She has shown improvements with keto, especially in the area of cognition, but is it effective enough? Was her earlier improvement a honeymoon effect that has worn off or was there some other factor in play that we are not aware of? I check her ketones level regularly to ensure that she is in ketosis. If she’s eaten anything to throw her off ketosis, like if she’s somehow found no-no foods somewhere, it would be evident in her ketones, but luckily, those have remained constant at the appropriate levels. Starting an unknown medication is not something I want to do, but the consequences of uncontrolled seizures are worse. If she continues to have seizures at her frequency, it can lead to brain damage, scar tissue in the brain, and it could prevent her from the cognitive growth we’re hoping to see with her other support services like ABA Therapy.

Because of the liquid to a tablet medication change, our meeting with the dietitian had a positive outcome. Maggie is now able to change her diet from a 4.2:1 ratio to a 4:1 ratio. This is excellent news because this means she can have more protein and carbs to fats. Don’t get me wrong, her plate will still look more fat than anything else, whether the fat is butter, oil, or mayonnaise, but the ratio change is easier for meal prep.

Later yesterday afternoon, Maggie had her behavior therapy session. We meet virtually every other week for an hour and our primary focus in behavior therapy is her mouthing behaviors. Recently, Maggie destroyed her chewies. On her pillowed backpack, I have strapped within her reach a pacifier and a chewy (the ones she destroyed were the monkey rings). Maggie began chewing other objects after much improvement because we were waiting to receive her new chew toys in the mail. She had a little backslide with trying to chew and mouth random toys and other things, but now that she is stocked strapped to her backpack, Maggie is back to chewing appropriate objects. There are other behaviors were working on, like her climbing and interactions with her sister. The climbing is an issue, but our best remedy for that is supervision and redirection. With her sister, Maggie isn’t being aggressive, but they squabble. I think at this stage, their interactions are typical of siblings their age, so that’s less of a focus now. For Pica kids (pica is a compulsion to chew and eat non-food objects), the goal is to completely stop the behavior. With the chewies, she’s improved, but we’re still working on it.

What I’m hoping for now concerning Maggie’s treatment is that she continues to show seizure reduction. I hope that her seizures will drop back to three or less so we won’t need to make any additional changes. I’m hoping that the keto diet will take care of what’s going on. I ask for prayers that Maggie’s seizures will reduce so she won’t need any new medications.


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