Neurology referred us to Nephrology because Zack has had crystals present in his urine for over 3 months, despite adding poly cytra k crystals to his bottles. They went ahead and squeezed him in to Radiology to do an ultrasound of his kidneys today and found a small 3 mm spot in his kidney, which I don't remember if the doctor called a calcium deposit or an actual kidney stone. He also said something about how he did not see calcium oxalate in his urine but rather calcium phosphate, which affects the treatment plan. The nephro decided to start Zack on Diuril tablets twice a day.
At the same time, we went for a feeding appointment with the OT, and we got the okay to start baby foods for the first time! This meant we had to get with our dietitian to come up with some recipes for Zack's food because of his Keto diet, but it also meant more room for change with his keytones and calorie intake. Anyone familiar with the diet knows how significant this can be for seizure control.
The reason I mention this is that Zack's first dose of Diruril and his first taste of carrots happened within 24 hours of each other, and within the next 24 hours we started noticing a big change with him. He didn't seem to want to eat very much over the next couple days, so the baby foods quickly were cut out to try to save as much room for fluids as possible. I was also concerned that maybe the carrots were throwing off his diet, and wanted to rule that out. By the third day of the new med, he was having what we feared were seizures every time he woke up. I let our neuro know about the increase in seizures and we were able to get him into the Epilepsy Monitoring Unit rather quickly.
We were admitted to the hospital for a 24 hour VEEG, and Zack performed a little too well for the doctors in my opinion. He had about twenty some events, as we flagged any questionable activity. We learned that about half of the events were true seizures, and the others were attributed to behavioral movement, poor muscle-brain coordination caused by seizure activity, and some events showed spikes in the brainwaves, but were not actual seizures. Even though not all the episodes were seizures, he still had the largest number of seizures we have seen him have in months, around 8-9 estimated seizures over the 30 hours he was hooked up.
After discussing a lot of the recent activity with Zackary, we decided that the first thing to do would be to stop the Diuril and see if that allowed his appetite and seizure control to return. We were given instructions to try this and see how he responds, and then we are to follow up with nephro next week. I am extremely happy to say that we are seeing a wonderful improvement with Zack already, and it hasn't even been three days without the new med. He is still not eating as much as we would like, so no more baby foods, but it's after 10 in the evening and we have only seen 3 seizures today, so I'll take it! I have no idea what the plan will be to treat the kidney stone, but we will definitely be finding something other than this.
As for some exciting news: I have found some online boards and pages for children who have been diagnosed with Infantile Spasms and also for those on the Keto diet and it has been great to have other families to share experiences with and get ideas from, and I couldn't be more thankful for that. For some even more exciting news, I have been able to find THREE other families here in the states who have children with STXBP1 genetic mutations!! This is exciting because 1) there are only "a handful or two documented cases" and 2) it is really nice to have the opportunity to connect with other families who are going through some of the same things we are with the same cause, as this can affect treatment options significantly.
I think I have rambled enough for now, but I have figured out how to post pictures, so I will end with some pictures of Zack's life recently at 9 months old
First time grabbing something and bringing it to his mouth = Very proud Mommy and Daddy!!!
Finally got his new swim floaty and tried it in the tub; after a few minutes he seemed to love being able to move so easily! And yes Zack is tough enough to be able to sport the pink ;)
First time eating solids = success!! Carrots and butter for his Keto diet, and he acted like he'd been eating them for months!
MU won the football and basketball Border War games this year; Zack is very proud!
Hanging out in the oh so lovely EEG "hat" at the hospital with Mom and Grandma Nancy
No comments:
Post a Comment