What.A.Week. Actually, if I’m being honest these last two weeks were something else. If you’ve been following along you know we had an intensive therapy week blocked out for Madison 2 weeks ago already that got all messed up due to teething pain. Welp, turns out it wasn’t just teething that was bothering Maddie girl. Her tooth had cut by the weekend but she was still crying in agony ALL day and night. The way she was arching her body indicated to me it was stomach related, but of course you never know with her! Also, unfortunate timing, but we had a neuro-ophthalmologist appointment at CHOP on Monday that we had already rescheduled once. So, even though she was clearly uncomfortable and we had barely slept in days, we really wanted her to get seen for a second opinion in regards to her vision and CVI.
I called her pediatrician Monday morning and we decided it would be best to attend the CHOP appointment and swing by their office after. Without getting into too much, CHOP felt like a total waste of time. I’m honestly so disappointed. Although she was seen by a neuro-ophthalmologist, the appointment pretty much went the same way her normal ophthalmology appointments go. We left with the same diagnosis and a more pessimistic view on what Madison can see. It sucked. And after a crappy appointment we had to drive all way home and to the Pediatrician’s office with an extremely uncomfortable baby. Not fun.
We explained to her doctor that Madison had been extremely irritable and upset for a week now. No fever. No vomiting. Just SO uncomfortable. My mom gut was telling me this was all constipation related. You see, Maddie suffers from constipation as a side effect from one of her seizure meds. It typically doesn’t pose too much of an issue, and when she does seem uncomfortable prunes usually do the trick. However, since we’ve switched her diet to more solid foods and less bottles, I think it just became too much backed up in her system. And obviously not digesting food is harder on the system than just milk.
Her doctor too couldn’t find anything wrong with her. She advised we give it another day on the medicine Madison’s nutritionist actually prescribed for occasional constipation, and to give her gas meds as needed to see if that helped. The next day she seemed a little better, but not back to her baseline. However, Wednesday rolled around and she was in agony again. I’ve seen Madison go through hell already in her short life and to see her in so much pain is excruciating for me. All I can think about is, “when will the universe cut her a break!”
And to make matters worse, when Madison doesn’t sleep, and works herself up crying in pain, those things lower her seizure threshold causing breakthrough seizures to occur. In fact, constipation itself being a change in the GI system can cause breakthrough seizures because it changes the way she absorbs and digests her medications. So on top of trying to alleviate this pain we’re now also paranoid about extra seizure activity. Enough was enough.
I decided to take her for bloodwork on Thursday so we could have a better idea if anything else was at play. Could her sodium be too low or high because of her DI? Could she be sick with some infection or have kidney stones or something more serious? Bloodwork would give us some insights. Now taking an average child for bloodwork sucks. Taking Madison is probably 3x harder. She’s an extremely hard stick and hates giving up her blood, so we need to travel to a lab in New Brunswick that seems to have the best luck in getting her with just one prick. Luckily, we got what we needed and headed back to the pediatricians for another once over.
When her bloodwork all came back normal, we knew the odds of an infection were low. And based on everything else her doctor agreed that this really did just seem like a bad case of constipation. We added miralax and prayed for poop! Like literally, please God, let this girl poop and put this madness to an end. The thing with adding miralax however, is that it can interact with the way she absorbs her seizure medications. Lots of kids with epilepsy have reported having worse seizures on miralax, so we have to be super careful. It’s just so crazy that to solve one issue for Madison, one normal baby issue, we have to look at so many other complexities and determine whether or not they will be affected.
For Madison, something like being constipated and then also fixing that constipation can cause an increase in seizures, an increase or decrease in sodium, and therefore other electrolyte imbalances, which could then completely throw her body out of whack. Something relatively simple and straightforward becomes highly complex with a medically fragile child. It can be quite overwhelming. A special needs parent needs to be so organized and so in tune with what is normal for their child so that they can pick up on anything that might be “off.”
Thankfully, at least this time around, miralax seemed to do the trick with minimal side effects! We did see some abnormal seizure activity, but it hasn’t gotten so bad that we’ve been concerned. And Madison is literally a new person. No more arching and stiffening her body in pain. No more crying all day and night. By the time Saturday showed up, this girl was ready to weekend! And so that’s just what we did.
Brunch, a family walk, an impromptu dinner date with her Aunt & Uncle, and yesterday her very first Mets baseball game! That one is kind of a big deal too! We have tried getting her there ALL season and something always prevented us from being able to take her. We were so nervous this constipation issue would do the same thing and it was such a nice surprise to see her feeling well enough to be out for the day! Hands down one of the coolest things about having kids is getting to do things with them that you did as a child. That kind of nostalgia is just something else and truly special!
It was a loooong, exhausting, tough two weeks with our girl, but once again she got through it! And honestly it’s as if all that stress and exhaustion just vanished the minute she started feeling better! Unfortunately it’s likely this could happen again without keeping her on some kind of maintenance laxative, but because that can interact with her medications it’s also something we really don’t want to have to do. Hopefully we can get her more regulated the natural way moving forward, so cross your fingers for us! I’m actually taking her to see a pediatric chiropractor today which should supposedly help with her overall nervous system, immune system and any constipation issues, so here’s hoping we see it benefit our babe! Update to come! And thanks to everyone that reached out this week with additional suggestions to help her poor stomach! I really appreciate it! Crossing our fingers for a good week and HOPEFULLY, we can finally reschedule that intensive therapy for next week! Just like everything else in my life, it’s all up to Madison! Have a great week everyone!