Case of the Mondays

Life used to be so much more simple. It’s unbelievable the amount of issues we’ve had with poor Oliver over the past 2 weeks and I feel like we now have an even greater number of medical professionals to consult about it. Just when I thought we were simplifying our lives by graduating from the hematology clinic I’ve made an appointment at the gastro clinic and am contemplating contacting a pediatric urologist. Issues Oliver has had lately:

Oliver has been having some issues this past week with vomiting even though he's generally over his stomach bug from the week before and it seems he only vomits once or twice a day due to excessive coughing/gagging (he has a cold). But, when he vomits, it seems like most of the food he's eaten hours ago , has not digested at all. I'm worried he is having a new symptom related to CDG called delayed gastric emptying. I have read it can be worse after times of illnesses and CDG kids can have this plus cyclical vomiting that comes and goes throughout their lives. We've spent Saturday in the ER and they said he has a double ear infection and the vomiting is probably from the cold/cough and his electrolyte balance seemed fine and all looked ok. We did start Zantac on Thursday evening wondering if his vomiting (and associated cranky back arching issues ) were due to reflux. We'll see if things settle down soon, but we're hoping it is just a temporary thing and not a new CDG symptom.

We also have noticed a decrease in urination (and one day, Oliver if you are able to actually read this blog , I’m sorry for telling the whole world about your pee challenges). He will seem to get really upset at random times during the day with no explanation. Yesterday I realized that he had an awful sobbing screaming fit and then peed right after. It’s hard to tell when this is happening because he wears a diaper but I’m going to pay attention to it more. He’s also had some dark orange streaks in his diaper , which is what prompted us to go to the ER. We suspected a UTI or bladder infection or perhaps kidney stones. All were ruled out but I still think he’s having infrequent and painful urination in spite of normal test results. We will bring it up to his pediatrician on Friday. So he's pukey, unable to digest food (which is also kind of his medication since the diet is supposed to help seizures), won’t eat full meals, has cranky screaming periods with little or no explanation, and he hardly pees and cries when he does. We’re all falling apart over here trying to keep him happy and figure out how to get his body to process everything properly without adding too many more meds or supplements. here’s our current list of what he’s taking just to minimize some of his discomfort as well as treat the seizures and provide proper nutrition: Zantac for reflux 3x per day, Sabril for seizures 2x per day, Clonazepam for seizures 2x per day, Amoxicillin for ear infection 2x per day , Multi-vitamins 1-2x per day, Calcium supplement 0-1x per day, Miralax for constipation 1x per day

There are not enough hours/meals in a day to get all of this into the poor kid. Between the meds and supplements, getting his keto food into him and trying to keep him from crying we have no time left to just enjoy holding our baby , work on his therapy, or try to get him to see/communicate/hold his head up/etc.

Oh, and the ketones have been large the past week but after 2 doses of the antibiotic they are down to just a trace amount which means bad seizures will be coming at any moment. I called the pharmacist and the manufacturer of the medication and they both tell me absolutely no carbs or sugar are present in the medication and no one has any ideas why his ketones would be SO LOW on this medication. Luckily it’s only for 10 days but it’s going to be a rough 10 days.

Keep praying for Oliver’s health and for our sanity. We need it!