If you’ve been following along you know we were hoping to start Madison on the ketogenic diet as a means to relieve her seizures. The diet has a good success rate, especially for the type of seizures Madison has, and when effective can allow for a reduction or removal of medications. I attended a seminar all about the diet, it’s risks, the process, efficacy rate, etc at CHOP back in October. Read more on that here. It was super informative and we hoped to get Madison admitted in January or February if the team felt she was a good candidate.
On Halloween we met with the director of the program/CHOP neurologist we would be working with during the admission for the diet. That meeting didn’t go exactly as planned. Because Madison has such a complex medical history the Doctor had some concerns as to whether or not she would be a good candidate for the diet. We went over the risks and benefits and discussed the following concerns:
- Steroid Use: Because Madison suffers from various Endocrin issues, and takes steroids to replace what her body is not making, it could potentially be difficult to keep her body in ketosis since the steroids may fluctuate. I had previously discussed this with her endocrinologist and he didn’t see an issue since she is only taking steroids to replace what her body isn’t making, and nothing more. However, during times of stress, we do increase her dose which could potentially throw her out of ketosis.
- Growth Hormone: We will likely be starting Madison on the growth hormone in the very near future. (Full post on that to come!) While a child can be both on the growth hormone and keto diet, a common side effect of the diet is actually that one’s growth can be stunted. This could work against what we’re trying to accomplish with the hormone, and in turn not be good for her body’s development overall.
- Fluid Intake: Madison would need extra fluids on the diet and that can be tricky for two reasons. First off, she started giving us issues with taking the bottle once her top teeth cut. We did discover that she had a lip and tongue tie and got that corrected, which has helped, but she’s still not drinking as much as she used too. She’s also not fully drinking from a cup just yet, although we’re working on that in speech. So to actually get an increase in fluids into her, could be difficult. Secondly, an increase in fluids could potentially throw off Madison’s diabetes insipidus. DI causes an imbalance of water in the body affecting thirst and urination, and in turn sodium levels in the body. Madison takes a medication that helps her body hold on to fluid so that she is not urinating too frequently. If we increase fluids, her body could potentially experience a fluid overload which would affect her sodium levels and could actually cause seizures to occur, which is what the ketogenic diet is trying to prevent.
- Constipation: This is a common side effect of the diet and sadly Madison already suffers from pretty severe constipation due to her seizure medications. She takes Miralax on the reg and we would hate to make this worse for her.
Having said the above, you might be thinking, why would you start her on a diet when she could have all of these complications? Well, if she’s having constant clusters of seizures every single day, the benefits of clearing those are far greater than the aforementioned risks. The above risks can be somewhat controlled and monitored whereas seizures can have a lifelong effect on her development and quality of life.
Having a medically complex kid is hard. Parents are constantly put in a place where they have to make serious decisions about things that essentially offer no good or perfect solution. There are side effects to everything and with the help of her care team we really need to always outweigh the benefit vs. risk of doing anything.
Since majority of the neurologist’s concerns dealt with Madison’s endocrin imbalances, she suggested we meet with the endocrinologist at CHOP, who knows the diet very well. While Madison’s current care team felt these issues were not a huge concern, and that the benefit outweighed the risk, they also don’t know the ins and outs of the diet as well as those that work with kids on it everyday. And so this past Wednesday we finally had our appointment with the endocrinologist at CHOP!
Based on our conversation with her, we confirmed that we could indeed put Madison on the diet if we feel it becomes absolutely necessary. Madison would likely need to be admitted longer than the average patient so that we had the time to really monitor her sodium levels and see how her body reacts to the change in diet. We would potentially need to adjust her meds, and since DI is extremely hard to manage, that could really take some time to flesh out.
Since we increased Maddie’s meds after her last EEG back in November, we have seen a significant decrease in her seizures. She hasn’t had her normal cluster since actually, but still has some random jerks that we’re not sure about. They could be a new type of seizure, could be her spasms now presenting as just 1 jerk rather than a cluster, or could be nothing at all. Lots of kids with neuro issues have involuntary ticks due to meds and irregular activity in the brain. We would need another EEG to confirm for sure.
We’re also exploring getting her a medical marijuana card, and hoping that this will help as well. Since her seizures seem to be in a much better place, we’re hoping to add medicinal marijuana as an extra means of relief, and since there are some concerns with the diet, we decided that we are going to hold off for now and hope that the med changes and marijuana will help her find seizure freedom. However, if things get any worse again, or we cannot find relief, we will admit her for the ketogenic diet and just need to watch her more closely than the typical child.
It’s been quite the process, but we’re glad to somewhat have a plan in place for her. I sincerely hope the meds, or even more so, the marijuana help her find total seizure freedom, but I’m glad we pursued the diet and know that we do still have that in our back pocket if we should need it!
It’s been a hectic few weeks over here because Madison had her intensive ABM therapy last week, has been teething like a mother and nonstop screaming at us, on top of traveling to PA for this appointment and getting ready for the Holidays! But I guess we can at least check the keto process off our list! Now I can focus on getting her the medical marijuana card, which has been a little more difficult than I had hoped, but update to come on this process as well! Planning to spend this weekend at home after being so go-go-go for the last two weeks, and hoping miss Madison gets her act together before Christmas! Enjoy the Holiday weekend and say a prayer for us that Madison overcomes this rut and gets back to the smiley vocal girl she was finally becoming!
December 22, 2018
Thank you for sharing all this information and Madison’s journey. I am learning so much. ♡