The wean went successful for Sam coming off the periactin. He takes it for the cyclic vomiting syndrome. He came off it fine and then had only one cycle while he was off. It was the day after Christmas, so could have been caused by the excitement of Santa & the presents, etc. It was a fairly easy cycle with us being able to break it with just zofran. Some cycles are soooo much worse!!
As for his behavior and sleep…..I didn’t think there was really much change. 😦 He still continued to be crazy and hyper etc. Much like he was when he had the paradoxyl reaction to the Benadryl. The sleeping is so much better now but it is because once I knew it wasn’t the periactin I enacted a reward system that is working wonders!!
On Monday of this week he again complained of some mild nausea, not really a cycle, just mild nausea so I decided it was time to restart the periactin. Three days into it I wondered if there really was a difference in his moods off it vs. on it. Sure, he’s a hyper rambunctious boy but in the 4-6 weeks he was off I don’t remember seeing any episodes where he got VERY angry when he didn’t get his way. Three days into being back on it I did. I remember these episodes well too!! When Sam doesn’t get his way he gets quite angry. He yells in a totally different voice and if angry enough he hits. I really don’t remember ANY of these episodes when he was off the periactin. Now though, I really wish I had known to closely watch for these along with the sleep issues and craziness.
I don’t really want to take him off again so soon and really confuse his little body. So, I guess my plan now is to keep him back on it for long enough to see if these anger reactions are happening often. If they are then I’ll take him back off and see if they really do stop. And if they do then no more periactin for Sam! It’s not really worth it to be so angry at 4 years old. Not when there are other meds out there.
Sam had his latest GI appt today for his cyclic vomiting syndrome (CVS). He has been episode free since before his surgery so there will be no dosage changes. This is fine with me as I don’t really want to go up on his periactin at all. In fact, I wanted to and asked to have a trial off of it.
Sam is a very wild child. Some would describe him as a “typical boy” but I’m not sure it isn’t more than that. He is just downright crazy!!! And more than anything he doesn’t sleep well. They really grilled me as to if this started when he started the periactin and if so why I hadn’t said anything before now. Well, first of all, he has been on the periactin so long that I really cannot remember what he was like before it and second of all I didn’t realize this was possibly one of the side effects.
But they didn’t agree with me and say that periactin is the #1 best med for CVS so we should continue on it. To pacify me it was agreed that we would give 1/2 the dose in the morning and 1/2 the dose in the evening and see if that had any change in his behavior or sleep habits. I’m not convinced……
Oh and he gained a pound and grew 1/4 inch in the month since he was seen last! Quite amazing since he was recovering from open heart surgery during that time!!!
Today was Sam’s first appt at the GI office. He was seen there rather urgently due to the number of vomiting episodes he has had recently. We were hooked up with a rather nice and thorough APRN. She works very closely with one of the GI doctors and in fact clears everything with him before we even leave. I’m not used to that. Every other APRN I’ve ever dealt with has just done our stuff and sent us on our way without consulting with a doctor in front of us!
She is pretty sure Sam has something called cyclic vomiting syndrome (CVS) but we will have to rule out all other causes of chronic, frequent vomiting too. He will be scheduled for and abdominal ultrasound and upper GI series. He had bloodwork today which he was none too happy about!!! He will be started on a medicine called periactin that is used to try and lessen the frequency of his episodes and then will be given the antiemetic zofran as needed to try and ward off a cycle once one has started. All in all it was a good visit.
We now just have to wait for the calls about the bloodwork results and the appt for the next tests.
I was called by the daycare this morning and they reported that Sam was complaining of nausea and has a fever. They say he was fine one minute and it came on suddenly the next. I went and picked him up and called the pediatrician’s office. Unfortunately the pediatrician who has been working on this is off today…..uggh….can it get any worse!!
After an hour at least they call back and one of the other docs had called in some zofran for his nausea. He was his usual pale, limp and inactive self. But luckily he was back to normal about 30 min after the zofran and he never actually vomited this time. Whew!!
Today Samuel was seen at the pediatricians office and evaluated for the vomiting. His neurological exam and the rest of the exam were normal so the pediatrician believes he may have a disorder called cyclic vomiting syndrome (CVS). He is going to consult with the local pediatric GI group for guidance and call us back within the week.