Phasmid Posted January 8, 2011 Report Posted January 8, 2011 Okay, I have to ask this here, as I have personally been told things over the years by folks whose kids had infusion with these docs. And what they tell me is that if the child responds pretty strongly after infusion, with headache, vomiting, fever, aches, etc., that means x, y z. Even as a PANDAS mom, I am skeptical about observational data, and I'm not sure what I am told is really based on science or not. Have you been told that a stronger reaction means better things in long run? What is the explanation for this? I have to give my son some hope that this is gonna be worth it!!!
PhillyPA Posted January 8, 2011 Report Posted January 8, 2011 I have never heard that before but be patient. Lots of kids have a reaction and it can be rough for weeks. The physical (fevers, throwing-up) will go away much quicker than the mental stuff. You can expect a little crazy for a while.
philamom Posted January 8, 2011 Report Posted January 8, 2011 (edited) Okay, I have to ask this here, as I have personally been told things over the years by folks whose kids had infusion with these docs. And what they tell me is that if the child responds pretty strongly after infusion, with headache, vomiting, fever, aches, etc., that means x, y z. Even as a PANDAS mom, I am skeptical about observational data, and I'm not sure what I am told is really based on science or not. Have you been told that a stronger reaction means better things in long run? What is the explanation for this? I have to give my son some hope that this is gonna be worth it!!! Dr. K once told us, in his experience, "some of the fastest responders are the one's with worse side effects". Of course, that was a year and a half ago. Keep up the hope! Edited January 8, 2011 by philamom
momaine Posted January 8, 2011 Report Posted January 8, 2011 Okay, I have to ask this here, as I have personally been told things over the years by folks whose kids had infusion with these docs. And what they tell me is that if the child responds pretty strongly after infusion, with headache, vomiting, fever, aches, etc., that means x, y z. Even as a PANDAS mom, I am skeptical about observational data, and I'm not sure what I am told is really based on science or not. Have you been told that a stronger reaction means better things in long run? What is the explanation for this? I have to give my son some hope that this is gonna be worth it!!! My dd is a patient of Dr. B. He does everything in his power to minimize those side effects, so I cannot believe that he would think they are beneficial in any way.
eljomom Posted January 8, 2011 Report Posted January 8, 2011 If you do any research on IVIG, and I've only done a tad...but I read over and over how the speed at which it is given affects the side effects, and it's very important to be careful with that.
tpotter Posted January 8, 2011 Report Posted January 8, 2011 Dr. B. makes it a point to do it very, very slowly. I don't know about the others.
philamom Posted January 9, 2011 Report Posted January 9, 2011 Dr. B. makes it a point to do it very, very slowly. I don't know about the others. Yes, I agree...Dr. B's nurses are the best! As soon as she started with a headache, they slowed the infusion down and wrote it down in her record. They also know of my daugher's phobia of vomiting, so they did everything they could to prevent it from happening. It worked...no vomiting with IVIG 3 & 4. But of course, that's not the case for everyone. Hang in there Phasmid!
norcalmom Posted January 9, 2011 Report Posted January 9, 2011 yeah Dr K said that if he does have the initial side effects - headachs vomiting, then he thinks its a good sign, that imorovement will be fairly quickly and dramatic. And it was for us. (and we had both migraine and vomiting!) He ALSO said that he felt that kids that have food and eating issues, have moree tendancy to need another ivig. Even though my son's eating issue aren't his own (he hates seeing me eat) Dr K said he is still in that category. Weird.
Phasmid Posted January 9, 2011 Author Report Posted January 9, 2011 I believe he received 25 grams over the course of 2.5 hours.
melanie Posted January 9, 2011 Report Posted January 9, 2011 weve had 16 IVs and never NEVER has his dr wanted to see side effects NEVER!! I also heard this statment on this board ,dont believe everything you read.
philamom Posted January 9, 2011 Report Posted January 9, 2011 In no way did Dr. K infer he would like to see side effects, just stated in his experience, many patients who had major side effects right away...went on to have a quicker conversion. He also does what it takes to minimize the headaches and vomiting.
Phasmid Posted January 9, 2011 Author Report Posted January 9, 2011 Thanks guys. I think it SHOULD be obvious that docs don't encourage these side effects, and I will be more careful in my wording next time, but it was a physician in Chicago who mentioned to another parent, who I used to speak to, that the strong side effects were associated (somehow, not specified, that is why I posted the question here) with better outcome. I just spoke to my doc's on-call physician who told me that my son should not have developed a fever! Now I am more concerned. CAN ANYONE TELL ME IF FEVER OCCURRED IN YOUR CHILD'S CASE? DID IT SUBSIDE ALONG WITH HEADACHE?? THANK YOU!
Fixit Posted January 9, 2011 Report Posted January 9, 2011 weve had 16 IVs and never NEVER has his dr wanted to see side effects NEVER!! I also heard this statment on this board ,dont believe everything you read. mel...is that an update?? even if it came in through the back door...i'm very glad
philamom Posted January 9, 2011 Report Posted January 9, 2011 Thanks guys. I think it SHOULD be obvious that docs don't encourage these side effects, and I will be more careful in my wording next time, but it was a physician in Chicago who mentioned to another parent, who I used to speak to, that the strong side effects were associated (somehow, not specified, that is why I posted the question here) with better outcome. I just spoke to my doc's on-call physician who told me that my son should not have developed a fever! Now I am more concerned. CAN ANYONE TELL ME IF FEVER OCCURRED IN YOUR CHILD'S CASE? DID IT SUBSIDE ALONG WITH HEADACHE?? THANK YOU! Yes to fever. Yes, it should subside with headache. It's been 2 days correct?
Phasmid Posted January 9, 2011 Author Report Posted January 9, 2011 Okay, thanks. I'm not worried anymore. Even Dr. K's website info lists fever. Thanks for letting me know your experience!
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