wornoutmom Posted June 16, 2010 Report Share Posted June 16, 2010 Well, we made it through the IVIG. The first day went great - a little grumpy, agitated after but no side effects. Gave him his last dose of ibuprofen at 11:30 and decided to let him sleep through the night. At 6:30 am he wakes me up to say his head is splitting in two. I give him Ibuprofen, make him drink a glass of gatorade and wait 45 minutes. No relief. So I give him prednisone. 15 minutes later he vomits. He rests for another 45 minutes and we have to leave to go to the infusion center. He vomits again in the car. We get there and they say there's no way their doing the second infusion with him like this. We call the doctor who says - oh yes, you have to do the 2nd infusion. We think maybe its dehydration so I call back the doc who orders IV saline and says to try and give him some Tylenol. I do. He throws it up 10 minutes later. They start the saline. We wait. He is miserable. After about an hour and a half he is able to drink so I give him more Ibuprofen. Then they take his temp and its 99 (he was running 97.5 yesterday) and his blood pressures up. Despite the Ibuprofen and the hydration his temp keeps rising up to 101.4. The nurse is saying no way is she going to do this infusion with a temp like that. Big thanks to Mary M who was at the IVIG center in Chicago with Dr K. and picked the brain of the nurses there about this and texted their response to me. These texts calms down our nurse who has never even heard of PANDAS before us and she gets gun ho to do everything she can if she has to stay all night. I also call our docs office again and tell them about the info from Dr K and his IVIG gang and they are grateful, saying they are just new at using this. I told them to make sure ALL future patients are given hydration orders with BOTH doses! (and I am kicking myself - because I knew better going into this).We give him Tylenol since the Ibuprofen has stayed down. An hour later the fever starts to drop, he eats and uses the bathroom for the first time since 6:30 (despite the bag of saline that has been dripping into his arm for the past 4 hours). We start the infusion at 2 pm and leave the center at 6 pm (9 hours later) with a saline drip bag still going for home. I had to call the nurse 3 times after I got home about it.. Have to remove the IV at 1 am myself which I am trying not to freak about. He freaked out and began sobbing at home asking me relentlessly about PANDAS and what this was all for (like we haven't gone over it 1000 times). I chalk it up to stress relief. He still has a searing headache but only when he changes positions. About 8 pm his leg starts uncontrollably twitching (like a shiver movement and a foot shake) To his credit he is fairly calm about it, and I finally went and felt his calph muscle which was seriously seized up. We put moist heat on his foot and this seemed to do the trick. Finally fell asleep at 11. Now I have to wake him soon to take out this IV and then every 3 hours for the pain meds. I am SO exhausted and so hoping tomorrow goes smooth as I can't imagine where I will get any more energy to deal with side effects from. I am praying all of this is worth it in the end.... Link to comment Share on other sites More sharing options...
deby Posted June 16, 2010 Report Share Posted June 16, 2010 I am praying for your son's recovery and that tomorrow will be easier. I'm new at this and didn't know that IVIG is such a hard experience, but what I read it really helps. Hang on, you already passed the hardest part! Link to comment Share on other sites More sharing options...
melanie Posted June 16, 2010 Report Share Posted June 16, 2010 Thinking of you guys today,why tylonol and not advil?Also why not give the steroid after the IV?I have a script to give it after thre IV for headache? What about the benadryl? Was this through Dr K? Hope today he feels better.Keep an eye . Melanie Link to comment Share on other sites More sharing options...
kimballot Posted June 16, 2010 Report Share Posted June 16, 2010 We haven't been trough IVIG yet and I do not have any pearls of wisdom. I remember worn out Dad saying a while ago that it was like you were steering the ship at every turn with your son because the docs and the school never quite knew what to do with him. You have steered it so well thus far. Sounds like you need to keep steering a bit. I am praying you get some relief soon. Link to comment Share on other sites More sharing options...
wornoutmom Posted June 16, 2010 Author Report Share Posted June 16, 2010 Melanie: We were actually alternating Tylenol and Motrin every 3 hours. We weren't really given instruction on how to use the steroid. I asked our docotor for it due the great folks on this forum posting about it, but didn't know to use it to prevent the headache - just though it was the "in case of emergency". Honestly he handled the infusion so well I never even thought about it, and then when I did give him the steroid, figuring that would nip it in the bud, he threw it up. Live and learn....sigh...I've been dosing the tylenol and advil now around the clock (I am so tired...) and the headache is pretty low level now unless he moves his head or changes position too quickly. Do you think its worth giving him the steroid for that level?? (I know from past experience those make him dizzy, so not sure if that's better or worse) Thinking of you guys today,why tylonol and not advil?Also why not give the steroid after the IV?I have a script to give it after thre IV for headache? What about the benadryl? Was this through Dr K? Hope today he feels better.Keep an eye . Melanie Link to comment Share on other sites More sharing options...
melanie Posted June 16, 2010 Report Share Posted June 16, 2010 Melanie: We were actually alternating Tylenol and Motrin every 3 hours. We weren't really given instruction on how to use the steroid. I asked our docotor for it due the great folks on this forum posting about it, but didn't know to use it to prevent the headache - just though it was the "in case of emergency". Honestly he handled the infusion so well I never even thought about it, and then when I did give him the steroid, figuring that would nip it in the bud, he threw it up. Live and learn....sigh...I've been dosing the tylenol and advil now around the clock (I am so tired...) and the headache is pretty low level now unless he moves his head or changes position too quickly. Do you think its worth giving him the steroid for that level?? (I know from past experience those make him dizzy, so not sure if that's better or worse) Thinking of you guys today,why tylonol and not advil?Also why not give the steroid after the IV?I have a script to give it after thre IV for headache? What about the benadryl? Was this through Dr K? Hope today he feels better.Keep an eye . Melanie Ok well weve had 8 IVs in total since last aug.The 1st on he had a huge headache he was in the hospital ,the neurologist didnt do it again because he freaked about him having a headache.Since then we do the infussions every 21 days at home,he has had 1 bad headache the 2nd infusion,he couldnt turn his head.We gave him 20mg prednisone.The others have always been prescribed 30 mg pred but he hasnt had any headaches since IV #3.But we have it just in case.Let me know Melanie Link to comment Share on other sites More sharing options...
Fixit Posted June 16, 2010 Report Share Posted June 16, 2010 can i throw something out...not sure if i heard this right..or from who.... but ...maybe, tylenol is not good to use with ivig...it's counter productive to why you are using the ivig .....?????? again...i could be wrong, have the wrong info completely, misunderstood....... please, anyone correct me or clarify....and if no one does ,,,,still doen't mean i got that right.... Link to comment Share on other sites More sharing options...
Stephanie2 Posted June 17, 2010 Report Share Posted June 17, 2010 All I know is that tylenol is usually not a good idea for kids who have low levels of glutathione b/c it further depletes it. Not sure how that relates to pandas, except that some of us on here may have kids with ASD issues who tend to have low glutathione. Also, here is what I was told to do regarding the steroid/motrin. We were giving a methylprednisone dose-pak (I think it was 6 4mg pills the first day, 5 the next and so on). I was told to give it as soon as there is any feeling of headache or pressure in the head, etc. You have to catch it immediately before the vomitting sets in. So as soon as my son woke up and said his head hurt and he was nauseous (also had fever) I gave him the steroid right away. Within one hour all symptoms were gone. The key is to catch it right away to prevent it from progressing. Also, we were told to give ibuprofen every 4 hours (I believe) for 3 days post IVIG. Hope that helps for next time!! Stephanie can i throw something out...not sure if i heard this right..or from who....but ...maybe, tylenol is not good to use with ivig...it's counter productive to why you are using the ivig .....?????? again...i could be wrong, have the wrong info completely, misunderstood....... please, anyone correct me or clarify....and if no one does ,,,,still doen't mean i got that right.... Link to comment Share on other sites More sharing options...
melanie Posted June 17, 2010 Report Share Posted June 17, 2010 I agree about the tylenol,we definitly were told to use advil!!I give dan advil 200 mg daily,also we use solomedrl(sp)before the IVs Melanie Link to comment Share on other sites More sharing options...
saidie10 Posted June 17, 2010 Report Share Posted June 17, 2010 Well, we made it through the IVIG. The first day went great - a little grumpy, agitated after but no side effects. Gave him his last dose of ibuprofen at 11:30 and decided to let him sleep through the night. At 6:30 am he wakes me up to say his head is splitting in two. I give him Ibuprofen, make him drink a glass of gatorade and wait 45 minutes. No relief. So I give him prednisone. 15 minutes later he vomits. He rests for another 45 minutes and we have to leave to go to the infusion center. He vomits again in the car. We get there and they say there's no way their doing the second infusion with him like this. We call the doctor who says - oh yes, you have to do the 2nd infusion. We think maybe its dehydration so I call back the doc who orders IV saline and says to try and give him some Tylenol. I do. He throws it up 10 minutes later. They start the saline. We wait. He is miserable. After about an hour and a half he is able to drink so I give him more Ibuprofen. Then they take his temp and its 99 (he was running 97.5 yesterday) and his blood pressures up. Despite the Ibuprofen and the hydration his temp keeps rising up to 101.4. The nurse is saying no way is she going to do this infusion with a temp like that. Big thanks to Mary M who was at the IVIG center in Chicago with Dr K. and picked the brain of the nurses there about this and texted their response to me. These texts calms down our nurse who has never even heard of PANDAS before us and she gets gun ho to do everything she can if she has to stay all night. I also call our docs office again and tell them about the info from Dr K and his IVIG gang and they are grateful, saying they are just new at using this. I told them to make sure ALL future patients are given hydration orders with BOTH doses! (and I am kicking myself - because I knew better going into this).We give him Tylenol since the Ibuprofen has stayed down. An hour later the fever starts to drop, he eats and uses the bathroom for the first time since 6:30 (despite the bag of saline that has been dripping into his arm for the past 4 hours). We start the infusion at 2 pm and leave the center at 6 pm (9 hours later) with a saline drip bag still going for home. I had to call the nurse 3 times after I got home about it.. Have to remove the IV at 1 am myself which I am trying not to freak about. He freaked out and began sobbing at home asking me relentlessly about PANDAS and what this was all for (like we haven't gone over it 1000 times). I chalk it up to stress relief. He still has a searing headache but only when he changes positions. About 8 pm his leg starts uncontrollably twitching (like a shiver movement and a foot shake) To his credit he is fairly calm about it, and I finally went and felt his calph muscle which was seriously seized up. We put moist heat on his foot and this seemed to do the trick. Finally fell asleep at 11. Now I have to wake him soon to take out this IV and then every 3 hours for the pain meds. I am SO exhausted and so hoping tomorrow goes smooth as I can't imagine where I will get any more energy to deal with side effects from. I am praying all of this is worth it in the end.... Sending prayers your way for a speedy recovery. Poor thing! Very tramatic on a child but it will be worth it....keep thinking this! Link to comment Share on other sites More sharing options...
tired mom Posted June 17, 2010 Report Share Posted June 17, 2010 Sending best wishes and hoping things are going better now. Thinking about you and your family and sending extra prayers your way. Stay strong.... Link to comment Share on other sites More sharing options...
Joan Pandas Mom Posted June 17, 2010 Report Share Posted June 17, 2010 I am praying for you too. I hope things went smoother today. I don't know if your son can keep the prednisone down yet but one dose really helped my son's splitting headache the day after. Link to comment Share on other sites More sharing options...
wornoutmom Posted June 17, 2010 Author Report Share Posted June 17, 2010 Oh how I wish I'd asked this question more specifically before hand! Its hard to know how to use it best when I was the one asking the doc for it in the first place and he said - sounds reasonable - how many do you need and gives me 40 mg pills?The good news is the headache is down to a very dull roar and we've cut out the Tylenol and are just doing 600 mg of motrin every 6 hours until he tells me he's completely headache free. = All I know is that tylenol is usually not a good idea for kids who have low levels of glutathione b/c it further depletes it. Not sure how that relates to pandas, except that some of us on here may have kids with ASD issues who tend to have low glutathione. Also, here is what I was told to do regarding the steroid/motrin. We were giving a methylprednisone dose-pak (I think it was 6 4mg pills the first day, 5 the next and so on). I was told to give it as soon as there is any feeling of headache or pressure in the head, etc. You have to catch it immediately before the vomitting sets in. So as soon as my son woke up and said his head hurt and he was nauseous (also had fever) I gave him the steroid right away. Within one hour all symptoms were gone. The key is to catch it right away to prevent it from progressing. Also, we were told to give ibuprofen every 4 hours (I believe) for 3 days post IVIG. Hope that helps for next time!! Stephanie can i throw something out...not sure if i heard this right..or from who....but ...maybe, tylenol is not good to use with ivig...it's counter productive to why you are using the ivig .....?????? again...i could be wrong, have the wrong info completely, misunderstood....... please, anyone correct me or clarify....and if no one does ,,,,still doen't mean i got that right.... Link to comment Share on other sites More sharing options...
kim Posted June 17, 2010 Report Share Posted June 17, 2010 wornoutmom, I'm sorry that your Dr. wasn't more specific. I hope others who have been down this path will have some info on the prednisone, altho it sounds like you may be past the worst of it? I'm sure the use of tylenol isn't your biggest concern right now, but I thought I would leave this for anyone who wants to weed through the info. The sulfur pathways are of particular interest to me, and we no longer use acetaminophen here at all. I'm sure everyone appreciates you sharing your son's experience here, and pray you see good results. don't know about the contribution to the autism epidemic, but still some good info on why to keep the use of this stuff to a minimum http://www.thorne.com/altmedrev/.fulltext/14/4/364.pdf Link to comment Share on other sites More sharing options...
Fixit Posted June 17, 2010 Report Share Posted June 17, 2010 http://www.thorne.com/altmedrev/.fulltext/14/4/364.pdf Very interesting!!!! Link to comment Share on other sites More sharing options...
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