So I know I owe you guys all the details of our first family vayk, & I promise I’ll get to that, but in true Madison fashion this week has thrown us another unexpected curveball!
Yesterday Maddie and I were excited to get back into our normal routine after returning home from vacation over the weekend. Before our day really began I touch based with her neuro team to update them on the status of the ketogenic diet process and to share some updates on her current seizure activity.
When we met with the neurologist at CHOP on Halloween she voiced some concerns about the safety of the diet with Madison due to her Endocrin issues. Being on steroids could potentially keep her from entering ketosis and so she asked that we meet with the endocrinologist there who has a better understanding of the keto diet and it’s affects on endo kids. We have that appointment next month, so we’re still hopeful about the diet, but only if the doctors agree it will be safe for Madison.
I let her neuro team know this info and told them that while we had a few good months of her seizures seeming less intense physically, they more recently seemed to be getting stronger again. Not happening more frequently or anything, but just getting her more upset. In Florida we also had a few nights of her waking up and becoming pretty inconsolable. She was arching her back, grunting, crying, and for a good amount of time too. Now I wasn’t sure if this was neuro related, there is a such thing as neuro-irritability or neurostorming that can occur in kids with brain damage, or this could simply be teething or constipation related discomfort.
Either way whenever Madison does something out of character I get a video of it and share with neuro. And so that’s what I did yesterday morning. I sent videos of her current seizures and the arching and talked about whether or not we did need to adjust any meds knowing it would be a few months until we would possibly start the keto diet. Anyway, we stopped at the mall after that & then she had speech therapy. She even practiced drinking from a cup like a champ! When we left speech I had a message from her neuro team stating they wanted to bring her in for an EEG to check on things.
Now as annoying as an EEG is, its routine and she hasn’t had one since January, so it made sense. We went home and packed and headed to the ER, which is the fastest way to get admitted for an EEG vs. waiting for insurance to approve one. Madison HATES EEGs. Like really HATES. She is always awake all night fussing during them. The leads, which are the electrodes glued to the head during an EEG, really irritate her and it’s just always an awful night of no sleep for both of us. So I knew things wouldn’t be good. But unfortunately it wound up being her worst EEG ever.
She cried and screamed ALL night. It was painfully sad and exhausting to see her like that. And because she was working herself up so much, she was causing herself to have seizures she normally doesn’t have. The EEG probably captured 2 of her normal seizures, and everything else was madness. I was concerned that it now wouldn’t accurately depict her baseline and guide us in treatment, but also that she would work herself up so hard she would wind up in a status seizure. A status seizure is long & continuous & hard to recover from.
I had finally had enough and told the nurses they needed to contact the EEG folks and disconnect immediately, which they did. She calmed down a bit after the leads were removed but was still extremely upset and showing some out of character seizure like activity. We wound up giving her a rescue med to stop the seizures quickly before things got worse. At this point her heart rate was in the 200s and her temp was 103. Now I know my daughter & while everyone got nervous about the possibility of an infection or virus, I knew both of these were caused by herself getting so upset. She has temperature instability and she can easily spike a fever just by freaking out intensely; which she was doing ALL night.
When the body is under stress it produces hydrocortisone to regulate the body. Madison doesn’t make enough of it & takes this as a replacement because of her Endocrin issues. When she is under stress we need to up her normal dose to give her body the boost it needs. I asked the nurses to order a stress dose, or larger dose, of her med to help balance her out. I knew this would help her temp and heart rate, and luckily it did.
She finally calmed down and we’ve been watching her heart rate and temp come back down all day. Crazy huh? Just crazy! A simple routine EEG that should give us insight into her seizures, actually caused her to go under such stress that she seized more and worse than normal. I feel terrible for her. She was doing just fine until a stupid EEG. I always have anxiety taking her to the hospital and this sort of thing is exactly why. Simple things tend to snowball into something crazy for her. It sucks.
And so here we are still waiting. Will they let us go home tonight still? I hope so. The one positive was that although she was acting so upset all night, the EEG didn’t show any prolonged seizures, only brief tonic ones. Now, that’s still not her norm, and not accurately giving us a good picture of her baseline, but I’m glad that even though she seemed to be so agitated, all of the arching and screaming were not necessarily seizures.
We didn’t want to add a new drug to her list since we were hoping to start the diet and in turn wean meds assuming she does well on it, so I’m asking her neuro team to consider trying Epidiolex, which is the new FDA approved prescription CBD oil, or medical marijuana first. I’d rather try going another route before adding more medications since the likelihood of another drug stopping her seizures is unlikely. Guess we’ll see what they say! My poor girl is totally wiped from exhaustion and I just want to get her home where she’s more comfortable and I know “nothing can go wrong.” Lots of people probably feel safe in the hospital knowing their child is getting the care they need, but I feel more stress here. Madison becomes a totally different child EVERY time.
Because we’re here semi often and Maddie is such a unique and memorable gal, we know a lot of the staff very well and are pretty close with the Chief of Pediatrics. We had been texting all morning about Maddie since she knows her so well and she stopped in so we could try and come up with some new ideas on how to perform EEGs going forward. An overnight will just not be happening again anytime soon, obviously.
I feel very fortunate that her care team trusts my opinion and listens to me when I disagree, make recommendations, or refuse something they suggest. Parents- special needs or not- please remember, YOU know your child best. YOU know what is normal for them and what is not. Do NOT be afraid to voice that. YOU are their advocate. And while doctors do of course mean well and look at the benefits vs risks of each decision, if you do not agree, don’t feel afraid to say so. Over the last year I know John and I both have found our voice and feel more comfortable saying no when we don’t agree to something.
I also want to thank everyone who reached out to me over the last 24 hours and for your prayers & support. We appreciate it more than you know! I know my girl and I know once we get home, she’ll get back to her baseline! So maybe tomorrow we’ll get back to our normal routine. (Maybe not!)
And being that it is National Epilepsy Awareness Month, I also want to point out that if you ever think your child or someone you know is having a seizure, video it and go to the ER. It can take months to get an appointment with a neurologist if you don’t already have one, and going to the ER is the fastest way to get admitted for an EEG. Videos are also key so you can share what is happening with a professional. To learn more about epilepsy, make a donation, or learn how to help someone having a seizure please visit the Epilepsy Foundation website. “Epilepsy can affect anyone with a brain. And anyone with a brain can affect epilepsy.”