We did another dose of IVIG over this weekend (Jan. 30-Feb. 1). It went well on the first day because he slept through a lot of it and we had a lot of visitors. Thanks to Jill and Carson for their visit and my mom and dad. Dray's sisters, Kate and Elle, got to come this time for a little while before my parents took them home. This made the day go by more quickly. We came in the next day on Monday for the next dose. We needed to talk to Dr. Thompson because we have noticed a change with Dray. He is now, several times a day, blinking and spacing out. Signs of absence seizures (pettit mal). So, after a long time with IVIG we went over to neurology to do a quick EEG. Dray was so great through it all. He charms and flirts with every nurse there. He has all of them wrapped around his little finger by the end of his visit. They all gather around him to talk to him, and then he calls out so confidently as we leave, "I love you!" and all the nurses go, "aaaah... he is so cute!!" Dray knows how to win them over.
So, lately I have been thinking he has been doing a little bit better. Better is a very relative term and usually is combined with some other symptom or habit that is not as good. But, he has been able to repeat new words back to us. Which, for him is the most difficult thing to do. I was feeling so depressed because he is now having these little seizures all the time. I just don't want to take steps backwards... ever!! Dr. Thompson called me the next day to discuss his EEG findings. He said they are indeed absence seizures, and now Dray will have to be on yet another medication. We have IVIG, steroids, and now ethosuximide (don't try too hard to say it). But, here's the encouraging part. He told me that his awake EEG overall (other than absence seizures) looked much better than his November awake EEG. Yeah!!! I'll take any good news I can get. Dr. Thompson sounded encouraged by that news. He also added that the absence seizures is in no way an indication that he has taken a turn for the worse, but that it may indicate the opposite. Who knows? I'm just glad that his awake EEG looked at all better. We will do an overnight in 3 or so weeks. I will keep you posted on that.
We are now for sure that Dray has a very violent and nauseous reaction to IVIG. I thought we were in the clear because he reacted so well to the first dose, but no. Tuesday was a disgusting mess of a puke day. I was cleaning puke messes ALL day. Poor guy. He spent all day in the shower and did not ever want to get out. I'm just sorry that he went to school. He just wanted to go so badly!! Next time we will get some medication for that... why should he suffer more than he already has to?
Thanks for the update Kerri. Braxton prays for Dray daily. Ask the doctor before his next IVIG if you can give him Zofran (better at preventing nausea. Doesn't work so well if he's already nauseous) or Phenergan. Usually pediatricians don't like to prescribe phenergan as much for little ones b/c of the sedative side effect, but in Drays case if he's under monitored care, the sedative effect might be a welcome effect. Rex does the anesthesia a lot for pediatric cases, and also wrote a paper on PONV (post op nausea & vomiting). Although Dray has not had surgery you could call Rex and ask him what he thinks would be best to help prevent the nauseous reaction in the future. Nausea & vomiting is such an awful feeling. I feel for little Dray.
ReplyDeleteOn a different note, your little Kate is just absolutely gorgeous. I love her little haircut. It bugs me so bad when I see little girls and their hair looks so scraggly, but Kate's haircut is just adoreable the way you style it. You can tell Elle is going to be just as cute.
Thanks again for updating. I don't blog or follow blogs, but we do like to read the updates on Dray, so thanks for sharing.
Mindy
Kerri,
ReplyDeleteI should post a comment more often. What a beautiful family you have. You and Todd are amazing parents. I pray that the IVIG results will be as you hope them to be. I am sorry for Dray that he has had such a hard time. What a sweet, precious little guy! We will keep praying for you.
Love, Stacy Smith Moritz