Epilepsy sucks. Diabetes Insipidus sucks. Hypopituitarism sucks. All of these conditions are difficult to mange on their own, but put them all together and the complexities can be overwhelming. With so many systems out of whack, a tiny change in one can greatly affect the others. Whenever something is “off” with Madison there’s never an easy answer as to why. We always have to look at the whole picture and it can make things quite challenging to say the least. So far, we’ve been pretty lucky in her care with most of her systems running smoothly and levels stable. This past week however we had our first real scare seeing firsthand how a domino effect of issues can occur for her when one thing gets thrown off.
Friday morning we took Madison for routine bloodwork. She’s a very hard stick and because of this, was behind on the normal labs we check for her Endocrin issues. Unfortunately the last 2 times I have taken her, the phlebotomist hasn’t been able to find a vein, or Madison hasn’t given up enough blood. What made things even trickier these last few attempts was that in addition to routine labs, we also needed to draw blood to check on her seizure medication levels. Because we plan to start medical marijuana soon, we need to know her baseline levels since the marijuana can affect the way her body metabolizes her current medications. This bloodwork needs to be timed and drawn before I give her meds at 8 am, which is when the labs open, so it’s been quite the challenge to get everything just right! Last Friday however, she gave up the blood in one shot! It was awesome. We got everything we needed and headed home.
Her endocrinologist called me that afternoon with the news that her sodium was quite high. Madison’s sodium is something we monitor because her diabetes insipidus can cause it to fluctuate which is quite dangerous. Read more on her Endocrin issues here. Although I’m always told how hard DI is to manage, we’ve been lucky so far and her sodium has remained stable pretty much since birth. Based on the high number her Doctor decided to adjust one of her meds to bring it back down.
Her diet is very different, and she has grown, so adjusting the dose made sense. One thing to note is that while both a low and high sodium are quite dangerous to the body, having it rise or drop to quickly back into normal range is equally as dangerous. This particular medication dose is not calculated based on a persons weight or age either, so unfortunately it’s a bit of a guessing game when it comes to finding the dose that works.
At the time Madison wasn’t acting lethargic or having an increase in seizures which is typical with sodium imbalances, so I agreed to keep an eye on her and we planned to repeat her labs on Monday to ensure the sodium came back down. Sunday afternoon however Madison wound up having a weird seizure episode that was quite different than her norm. Knowing what we did about her sodium, John and I rushed her to the ER to get checked. Her sodium was back in normal range and vitals were good, so we were sent home.
That night however Madison wound up having about 5 more episodes, all getting even more intense. I videotaped each one and sent them to her neurologist in the morning. Because they were quite scary and knowing her bloodwork was off on Friday, her neuro sent us back to the hospital for a complete work up, thinking something else could possibly be wrong causing these seizures to occur.
In typical Madison fashion, she didn’t have another episode the entire time we were in the ER waiting to get admitted. A good 12 hours had passed since the last episode and all her vitals remained perfect. We got sent to the PICU, but since all seemed okay, wound up being moved to the regular Pediatric floor. No joke, as soon as we moved, Madison wound up having another seizure, and unfortunately this one didn’t stop. After not seizing all day, she wound up going into status epilepticus, seizing for almost 2 hours straight. She was given 2 different “rescue meds” to bring her out of it, and we were immediately taken back to the PICU.
It was terrifying. She has never seized like that before, and what made it even scarier was the fact that we didn’t really know what caused it. Her sodium was normal. Her vitals were good. And yet here we were watching our otherwise healthy child seize uncontrollably for well over an hour.
We decided to run a urine culture and viral panel, both of which came back normal. We ran a cat scan, which showed no change from her last MRI. Nothing seemed wrong. Which of course is good, but also bad when you’re trying to determine why your child was suddenly having intense seizures that led to status. One reassuring sign was that Madison’s vitals remained stable and she had no respiratory issues. Many times rescue meds can cause breathing difficulties in kids, but Maddie remained strong in all areas which was great. She was quickly hooked up to a video EEG to monitor activity & continued to receive a low dose of one of the rescue meds into Tuesday.
Typically she does not tolerate the EEG for very long, but because she was so worn out from the status seizure and increased meds, she was able to wear it into Wednesday morning with no issues. She didn’t have another episode and her vitals continued to remain strong. With nothing jumping out at anyone besides being armed with the info that her sodium was high 3 days prior, the only explanation we could really come to was that perhaps her sodium dropped back into normal range too quickly.
When we had taken her to the ER on Sunday and learned her sodium was back in normal range, it was at a 145. On Friday it was 162. I don’t know enough to say whether or not that is a big drop over the course of 2 days, but upon speaking to the various doctors about it, they all agreed that it was pretty sizable. We can’t be certain that’s what caused the new seizure type, but it definitely just seems to weird with timing to not be related, especially when she is healthy otherwise.
Not gonna lie though, it has been slightly terrifying to go home without us knowing whether or not it was that for sure. The thought of her going into an episode like this again and at home is gut wrenching. I hope it never happens! Most families keep seizure rescue meds on hand in the chance their child does go into status. Up until this point we weren’t prescribed anything because Madison’s seizures have always been the same type and predictable. She was also on the younger side, so the doses that at home rescue meds come in would have been a bit strong for her. After this hospital stay however, we made it clear that we would not be comfortable going home without a rescue med, God forbid this was to happen again.
Anyway, Wednesday morning rolled around and I was under the impression we would begin weaning the additional seizure med she was given during the status, because that was really the only change that could be made to her care at that point. Apparently that was not communicated to the floor, no decision was made, and she still received the morning dose by IV. I was greatly frustrated by this because she wouldn’t receive another dose until 8pm, essentially meaning we wouldn’t be able to begin any changes to her care until then. A whole day wasted.
We removed the EEG Wednesday afternoon, and I was told we would likely convert the IV med to an oral form, go home with it, and wean from there. Sadly, that was never fully communicated from neuro to the floor either, and again no plan was put into place for discharge. We did get moved to the regular floor since Madison no longer needed intensive care, but with no plan it made no difference to me. An entire day of sitting around with no direction. I was beyond frustrated. And everyone knew it. Let me tell you, once you find yourself in the hospital more often, and once you feel more comfortable around the nurses and doctors, it becomes much easier to challenge them, voice your opinions and concerns, and advocate like a mother.
Thursday we sat around for most of the day again. After complaining about the lack of plan, I spoke to neuro around 10 AM and we decided the best course of action would be to convert Madison’s IV med to the oral form, and go home on everything as is. Aside from this med, and an increased dose of one of her other seizure medications, nothing else had changed in her care plan.
Sadly for anyone who has ever been in the hospital you might know that being discharged can take FOREVER! We literally sat around all day waiting for small follow ups before being able to leave. Because we think this seizure episode was due to her sodium levels, I had also asked to speak with the Endocrin on call in order to figure out a new plan of action for getting labs outpatient to monitor her levels more closely. Her sodium had been fluctuating in the high normal range while in the hospital, so ideally we’d like to bring it down a bit more, which would mean adjusting her medication again. This made me weary because adjusting this med is essentially what caused this domino effect to occur. We increased it by just 2mcgs and 2 days later she went into status. Madison is very sensitive to medication changes so although that may seem like a small amount, I wasn’t comfortable making that change again. Again, I’m lucky the staff knows and trusts my opinion and I was able to barter with them on upping her med by just 1mcg for now!
We repeated her bloodwork yesterday afternoon and will go again next week to see how her sodium is trending and go from there. Hopefully the increased seizure medications she’s now on will help prevent another episode as we tweak her sodium med from home. It was quite the week and just so unexpected. I’m grateful that we haven’t had this issue in the past and hope the sodium is truly what caused the status seizure since that is something we can monitor. However, our anxiety is definitely on edge now as we watch every little move she makes!
Her strength truly amazes me. When you have a special needs child with so many complexities you live in a constant state of fear not knowing what could possibly break them. And while no two situations are the same, so far we’ve seen her beat every obstacle thrown at her. Oh, and one positive that came from this week’s hospital stay is that aside from the status episode, her EEG overall is looking much cleaner! That’s huge. Her neuro is very optimistic that the medical marijuana we plan to start soon will help as well. Here’s hoping that’s true! We will hopefully be getting her medicinal card next week and will start soon after, but for now we’re happy to have made it home for the weekend and plan to spend it together!
I also just want to say thank you to everyone who reached out to me through texts and messages over our hospital stay. We truly appreciate your prayers and feel blessed that through sharing Madison’s journey she’s received so many new supporters in her corner. Thanks again for the support and have a great weekend everyone!
February 11, 2019
That girl is so lucky you are her Mama. You have so much strength especially when life challenges you. Always thinking and praying for your family. Love you all.
February 11, 2019
We love you too!! And it’s support and prayers from good friends like you that help keep us going! ❤️
February 11, 2019
Maddie is such a fighter! Love you guys!! xox
February 11, 2019
Love you Auntie Erica!