We took Jake into the doctors clinic today for his weekly to bi-weekly "finger pokes" as he calls it. We do a CBC count and test his platelet count. Today his count was 80,000. A normal platelet range for people is 150,000-400,000. Right now Jake has his IVIG medicine in him, when he gets the medicine it lasts for 3 weeks. Right now Jake has had the medicine in him for almost two weeks. His counts are usually a lot higher when the medicine is in him, but for some reason this time around his response has been lower. His doctor says that all IVIG medicines are not the same, that one can be more potent (if you will) than the next. So, she said that it could just be that this time around Jake just happened to get a not so potent IVIG. However, in June when he had his last episode of getting the IVIG his response lasted as long as it usually does and the counts were semi-high like usual but being so on top of everything and noting and dating everything that happens and his responses and all that happens with each treatment I noticed that although his range was good his numbers were about 100,000 less than they would typically be. For example, regularly a week after being released from the hospital his counts would be around 430,000 but in June they were only 350,000. It made me wonder if he was starting not to respond to the medicine since that can happen after som many treatments, but I was hopeful that wasn't the case.Then his episode in Aug. was starting to confirm that fear, but then like I said the doctor thought that it could have been just a bunk IVIG, but his results from the "finger pokes" are lower than normal this time. His doctor said that if he holds steady above 25-30,000 for 4 weeks from his last treatment of IVIG then it was the medicine but if his count drops below that before 4 weeks is up then it was him not responding anymore. If that is the case then we move onto Predisone steroids I guess. Jake would like that treatment since there are no needles or hospital stays, but I on the other hand will have to wait and see, since I guess steroids make kids moody, hungry, weight gain and all sorts of other side effects. With the IVIG there were no side effects and it was very quick to get the platelets back up to normal. So, we'll have to wait and see what happens, but his Dr. thought that since he had responded so well in the past that she thought or was leaning more toward it just being bunk medicine. Who knows, but all I know is that I wish this was all over and we didn't have to deal with any of it anymore. In the meantime I hope and pray that what ever treatment new or old, that he responds well.
Wow, that does feel good to let all of that out. Now , I feel like I don't have to think or talk about it as much anymore and the less I have to think or dwell on it the better we all are. Thanks for listening.
Terri
2 comments:
I think Jake is going to come out of this. It might take time, but I think his system will eventually start making more platelets on his own. You all just need to hang in there. Jake is being very brave getting his "pokes". Love, Mom
I'm so glad you wrote all this on the blog. You do a nice job of explaining things. I'm also glad that writing it and explaining it makes you feel better. You have a lot of stress right now, being pregnant and with your hearing and with school and your internship and everything else--you're being very tough and I'm proud of you for finding ways to cope and help yourself feel better.
As the youngest child in the family, you have developed an uncompromising self-preservation instinct. You have Jim and John to thank for that. It will serve you well. :-)
Kelly
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