Stephanie2 Posted April 1, 2010 Report Share Posted April 1, 2010 I just have a few questions and could use some encouragement!! My husband is out of town for 5 months so I am doing this myself with my 5 year old tomorrow (2 year old has PANDAS as well, hasn't needed IVIG yet). I have never been so scared! I was wondering what everyone's opinion is on the dosage of 1 gram per kilo given in one day? I haven't done much research regarding dosage. We are having this done at Dr. Bradstreet's office (Scott Smith, PA). Also, I know I am asking everyone to predict the future here, but is there any correlation between age and how long it takes for IVIG to work? My son is young but he has had PANDAS since he was 20 months old and it has become rather severe in the past year (we have just come to this diagnosis in the past 6 months). I mean, sneezing girl got results in 2 days but she only had pandas for a few months. I am guessing that our results may take some time? In the meantime my son is receiving Tenex and ibuprofen as needed, anything else I can give if things really get bad? We have a special situation in that he has become intolerant of antibiotics b/c he keeps getting very bad yeast/bacteria which is causing some serious rage and aggression, worse than pandas. So he can only really tolerate a prophylactic dose of antibiotics which really cuts short our tx options. Anyway, he has some aggression right now b/c of yeast/bacteria, so I am pretty scared of what IVIG is going to throw into the mix for the next few weeks. Not to mention my 2 year old has been fighting staph for 4 months! I really have my hands full!! Anyway, any info/encouragement/advice would be great. By the time I read this we will have already been done with the treatment... Sincerely, Stephanie Link to comment Share on other sites More sharing options...
bubbasmom Posted April 1, 2010 Report Share Posted April 1, 2010 (edited) I definitely want to prepare you for this. Many of us have experienced an INCREASE in symptoms immediately following IVIG. My son was doing very well for 2 weeks before his second IVIG, had it done the 22nd and 23rd. By the 26th WOW!!! 25th, 26th, 27th, 28th, it was very bad again. But now the 29th, 30th, and 1st have been very good days. After his first IVIG in October I remember it also. Hang in there. See the post by fuel for all, he says the same thing. My son also, both times, had a severe severe migraine and throwing up for a full 24 hours after the second dose. Alternate tylenol and motrin, use ice packs, and nausea medicine if you need it is what they recommended and is what we did. Good luck. Edited April 1, 2010 by bubbasmom Link to comment Share on other sites More sharing options...
ajcire Posted April 1, 2010 Report Share Posted April 1, 2010 (edited) Good Luck!! I don't know anything about the IVIG so nothing to offer there.... but I didn't see where it said that girl was better in 2 days? I didn't see anymore news updates so we wouldn't know if there have been any of the results some people have seen here. Edited April 1, 2010 by ajcire Link to comment Share on other sites More sharing options...
Ginger Posted April 2, 2010 Report Share Posted April 2, 2010 Good Luck!! I don't know anything about the IVIG so nothing to offer there.... but I didn't see where it said that girl was better in 2 days? I didn't see anymore news updates so we wouldn't know if there have been any of the results some people have seen here. Just wanted to say good luck tomorrow! Wish I had info on IVIG, but we haven't went down that road yet. Please keep us posted. Link to comment Share on other sites More sharing options...
melanie Posted April 2, 2010 Report Share Posted April 2, 2010 Stephanie How did the IVIG go?? Let us know how things are going Melanie Link to comment Share on other sites More sharing options...
Fixit Posted April 2, 2010 Report Share Posted April 2, 2010 it's gotta be tuff on your own.....sometimes just knowing someone else realizes thata might help you get through... saying a little prayer for you too.. I just have a few questions and could use some encouragement!! My husband is out of town for 5 months so I am doing this myself with my 5 year old tomorrow (2 year old has PANDAS as well, hasn't needed IVIG yet). I have never been so scared! I was wondering what everyone's opinion is on the dosage of 1 gram per kilo given in one day? I haven't done much research regarding dosage. We are having this done at Dr. Bradstreet's office (Scott Smith, PA). Also, I know I am asking everyone to predict the future here, but is there any correlation between age and how long it takes for IVIG to work? My son is young but he has had PANDAS since he was 20 months old and it has become rather severe in the past year (we have just come to this diagnosis in the past 6 months). I mean, sneezing girl got results in 2 days but she only had pandas for a few months. I am guessing that our results may take some time? In the meantime my son is receiving Tenex and ibuprofen as needed, anything else I can give if things really get bad? We have a special situation in that he has become intolerant of antibiotics b/c he keeps getting very bad yeast/bacteria which is causing some serious rage and aggression, worse than pandas. So he can only really tolerate a prophylactic dose of antibiotics which really cuts short our tx options. Anyway, he has some aggression right now b/c of yeast/bacteria, so I am pretty scared of what IVIG is going to throw into the mix for the next few weeks. Not to mention my 2 year old has been fighting staph for 4 months! I really have my hands full!! Anyway, any info/encouragement/advice would be great. By the time I read this we will have already been done with the treatment... Sincerely, Stephanie Link to comment Share on other sites More sharing options...
Stephanie2 Posted April 3, 2010 Author Report Share Posted April 3, 2010 Well, it took 4 people to hold my son down for the IV insertion, but after that it went smoothly (we had the mobile backpack which was nice). So far there have been an increase in tics and some separation anxiety, but overall so far so good. No vomitting, headache, ect. We are about 30 hours post-dose right now. Does anyone have any feedback regarding the dose my son received? 1 gr/kilo over one day (4 hours) Thanks, Stephanie Link to comment Share on other sites More sharing options...
Stephanie2 Posted April 4, 2010 Author Report Share Posted April 4, 2010 Update, my son woke this morning (at about 36 hours after IVIG) with a splitting headache and a fever and nausea. Lots of crying. So I started him on a Medrol Pack (methylprednisolone) which tapers over 6 days. Within 2 hours he was completely back to himself. Does anyone else's doc use this approach for the side effects? I may start a new thread on this. Stephanie Well, it took 4 people to hold my son down for the IV insertion, but after that it went smoothly (we had the mobile backpack which was nice). So far there have been an increase in tics and some separation anxiety, but overall so far so good. No vomitting, headache, ect. We are about 30 hours post-dose right now. Does anyone have any feedback regarding the dose my son received? 1 gr/kilo over one day (4 hours) Thanks, Stephanie Link to comment Share on other sites More sharing options...
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