I’m sure these posts are incredibly boring to read for most of you, but I need a place to record our symptom changes as we mess with Bennett’s meds and can’t keep them all straight in our heads. So today marked day 8 of lowering the Phenobarbital to 22.5 mg/day from his initial 30mg/day dose. It also marks day 19(ish) of being at 30mg/day of Zonegran. Last night was the worst night we’ve had in a while. Bennett’s sleep has been rough basically for the last few weeks consistently, but last night he literally went down at 6, up at 10:30-2:00AM screaming, slept on Dave in the bonus room chair for like 2 hours and then finally went down at 4ish until 7 when he was up for the day just screaming from the get go. During the last few days he’s been miserable as well.
I woke up with a nasty cold yesterday and it was much worse today, so I’m wondering if maybe he’s feeling like I am (sore throat, headache, sinus issues, coughing), but he didn’t seem too sick earlier so it didn’t really cross my mind. But Tylenol and some natural baby cold syrup seems to be helping him so maybe he is? It’s so hard to know. But I wanted to document his behavior from the last few days. I haven’t been able to set him down without him screaming and crying to be picked up, but he’s not happy being held either. Every once in a while he’s content to walk in his walker, but that’s generally short lived. His appetite is down as well. We’re having to force him to eat even one thing of baby food at lunch and dinner. And he’ll take about 6 bites of table food before he pushes it away and refuses to eat anymore.
After going back and reading the last few posts, I’m thinking that 30mg of Zonegran is a bad dose for him. He seemed to do better on 2 mL—temperament and sleep-wise. His sleep struggles started when we upped to 3 mL and have only really gotten worse with the added Phenobarbital wean. It makes me want to back off to 2 mL of Zonegran while we’re still on a good amount of Phenobarbital for him to see if it helps the sleep issues.
The other culprit could definitely be his acid reflux. We STILL never got an Omeprazole prescription sent in correctly so we had a pulmonologist who ordered a sleep study for Bennett call in a different one—Prevacid solutabs 15 mg/day. We started that yesterday so it’s possible last night was a result of the new antacid med, but Dave wanted to continue with the dosing tonight as usual so we’ll see how he does with his second 15 mg dose! I’m super nervous. I’m really sick. I think Bennett might be sick. And Dave’s about to drop dead of exhaustion. After not sleeping at all last night he had to stay home to take care of me and Bennett while trying to work all day too :/.
I’m just praying Bennett sleeps tonight (we didn’t start off great...took 90 minutes of him swaddled and rocked before he would take 6 oz and pass out) so we can recover a tiny bit. And praying that we get some clarity about what to adjust to help fix his sleep. We can’t live like this!!!!!
No comments:
Post a Comment