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I knew it would happen again. Up all night with vomiting. I phoned doctor when his headache seemed not to be reacting to advil, and went out to pick up the scrip for prednisone, and DS fell asleep (he had had two advil, so I was hoping that that was enough...and I wouldn't have to use the pred.)..but woke up with splitting migraine, and vomiting about an hour later...gave the pred...of course he threw it up..called doc again, he said to try one more half dose, since he might have absorbed some in the 10 minutes it was in his stomach...

 

He kept that down for a whole 15 minutes...and I do think it was enough to take the edge off the migraine, but the vomiting continued until about 3:00am (stared at 9:00pm).

 

I had to give him some more advil, and I gave him some this morning as well.

 

I REALLY don't want to use the steroids - I just don't believe they are the right thing to do with pandas kids - we just spent beaucoup energy getting ivig, to bolster his immune system, and now I'm going to supress it with steroids? Not to mention, if he has underlying infections- the ivig antibodies are attacking it - and I don't want to stop that attack. But of course, have to address the migraine.

 

My question is - what have your docs recommended post ivig ? We used 2 pretty high doses of pred. last time from dr K. ..before I knew much about what it did, and that there could be chronic infection in pandas kids at the route of this evil. I think he got a very small does last night amid all the vomiting...and I'm going to try not to use it today (doc gave us 3 days worth).

 

I'm not sure if the vomiting is from the migraine, or the headache vomiting are from "herxing", or just an ivig side effect. There really isn't anyway to know. Vomitting is a much less common side effect from the medication according to my doctor. He also had a similar vomiting two days after switching to Doxycycline..and I'm now thinking that the vomiting for him is a herx reaction. We're pretty sure he has mycoplasma, and that, like lyme, causes herxing when it is killed off.

 

I think I remember an old thread saying they gave benedryl post ivig. Did anyone do this or recommended from doctor? I know DS got a does of benedryl I gave him one this morning with some advil when he woke, trying to get a jump on the pain - figured the benedryl couldn't hurt and might get his to sleep again, since he didn't get much last night.

 

Thank you!

 

ps-yes he's hydrated

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So sorry DS is having such a huge physical response post IVIG.

 

Remember could be huge herx so treat it like one. Benadryl, Alka Seltzer Gold or Bentonite Pills/Activated Charcoal (8 pills at bedtime). Perhaps call Dr. H and secure additional prescribed detox medication.... He might also temporarily recommend backing down on antibiotics or stopping antibiotics to help. There is a lot you can do outside of steroids.

 

-Wendy

Edited by SF Mom
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I stopped the antibiotics...day before ivig I gave him half does of azith, and no rifampin...and nothing past two days of ivig..feel like too much stress on his liver..kinda made my own decision on that one...

 

Can you give activated chracoal during the day?

 

I will call doc H! Thanks!

 

k

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Dr B. says to give prednisone daily for 6 days - 2 days before, 2 days during IVIG and 2 days after. You need to give it in the morning with food - it will keep you up. They also give ibuprofen and benedryl(sp?) before and every 6 hours during and after IVIG. We continued this for a week.

 

My son got his first IVIG on Mon and Tues and got an huge reaction - racing brain - extreme irritability - at approx 8 pm on Wed evening. I had to make sure I gave him ibuprofen and benedryl every 6 hours or he would feel ill. I set the alarm.

 

Good luck.

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Norcal-

Sorry to hear you're going through this. I don't have any advice really. I do wonder why my daughter has never had this kind of reaction to IVIG? What's going on that's makes it so difficult for some kids to handle and so much easier for others?

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Thanks all-

mkur - racing brain is probably steroid side effect...causes irritability, insomnia, and hyperness in most people. Another reason I'm trying to avoid it (but do have the scrip just in case!!)..

 

I'll set the alarm for the advil and benedryl...

 

Thank you!!

 

Peg - I know its soooo weird. Part of me feels that the vomiting at least is something we might want some of - like a fever - you body's way of getting rid of something...of course its also a sign of inter cranial pressure...which we don't want...so hard to tell what is gong on.

 

Last time, he vomited several hours after a steroid does, in absence of a headache. It started 2 days after ivig. This time it was the evening of the second does of ivig...

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My son has had two high dose IVIGs and both times had lots of vomiting and a horrible headache. Both times the vomiting started at night after the second day of IVIG.

I have heard that slowing down the infusion can help with these side effects, as well as drinking lots of water days before IVIG, during, and after. We have done these things,

but my son still gets these awful side effects.

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My dd had headaches, some fever after her IVIG's. How about tylenol? We alternated Advil and Tylenol ever few hours, and kept up the benedryl.

 

Tylenol isn't a NSAID, so it is fine to give with Advil.

 

 

weird random thought:

re vomiting, I wonder if anyone has ever given a motion sickness type medication and if that's helped? For motion sickness. I like cyclizine (better than dramimine or reg. bonine). Cyclizine is in Bonine for kids http://www.amazon.com/Bonine-Children-Motion-Sickness-Tablets/dp/B0013NE374/ref=cm_cr_pr_pb_t and Marezine http://www.amazon.com/Marezine-Motion-Sickness-Tablets-12/dp/B000052YFK/ref=sr_1_1?ie=UTF8&s=hpc&qid=1302191880&sr=1-1

 

Cyclizine is an antihistamine (like benedryl) so you probably wouldn't want to give them together...but I just wonder if you could try it instead of benedryl? If it might do something more for the nausea?

Edited by EAMom
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My dd had headaches, some fever after her IVIG's. How about tylenol? We alternated Advil and Tylenol ever few hours, and kept up the benedryl.

 

Tylenol isn't a NSAID, so it is fine to give with Advil.

 

 

weird random thought:

re vomiting, I wonder if anyone has ever given a motion sickness type medication and if that's helped? For motion sickness. I like cyclizine (better than dramimine or reg. bonine). Cyclizine is in Bonine for kids http://www.amazon.com/Bonine-Children-Motion-Sickness-Tablets/dp/B0013NE374/ref=cm_cr_pr_pb_t and Marezine http://www.amazon.com/Marezine-Motion-Sickness-Tablets-12/dp/B000052YFK/ref=sr_1_1?ie=UTF8&s=hpc&qid=1302191880&sr=1-1

 

Cyclizine is an antihistamine (like benedryl) so you probably wouldn't want to give them together...but I just wonder if you could try it instead of benedryl? If it might do something more for the nausea?

 

We have used zofran to help with nausea.

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HELLO, I am new to the boards but wanted to share our experience. My son had his first round of ivig last week. Our dr. gave it to him very slowly over a 4 day period. He was admitted to the hospital thursday night, and they started his dose Friday afternoon and it went for 4hrs. They did this everyday until Monday. They also gave him a dose of tylenol and benadryl a half hour before starting the infusion. He had no side effects except a low grade fever on the 3rd day so they treated him with motrin, waited 4 hours gave him the tylenol and benadryl and then did the last infusion. He never got the fever again, and as far as I can tell never had a headache ( he is special needs). We are now 3 days post ivig and I havent really seen any difference in him. He still has ocd, alot of anxiety and is very emotional and extremly exhausted. The doctor said he will repeat the ivig again in about 2 weeks. My question is when do you typically see improvement from the ivig? I was hoping the after the ivig he would just snap out of this episode, but that didnt happen. Doctors told me to just watch for ANY little change in the episodes. Also, they beleive that he actually has PANDAS with overlapping Klein Levin syndrom symptoms because his episodes are cycling and he is always sleepy/exhausted during them. All of these symptoms happened after he had mono, which he got shortly after receiving the varicella booster vacination.

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When we started the monthly IVIG my daughter would do the infusion over 2 days. None of the vommiting/headache side effects. We eventually switched to doing the whole infusion (1.5g/kg=@70g) in one day. Still no side effects.

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Thanks for all the good information. I think we are through the thick of it - with all your help. Yesterday we added Benedryl, every 4/6 hours, and kept the advil going regardless of how he said his head felt.

 

He had an increase in headache last night, but I gave him two advil, and woke him in 5 hours to give another 1 with a benedryl..Also gave him some bentonite clay during the day.

 

Started his Azith back up today. He said his headache was at a .5 on scale of 1-10. ..only when he shakes his head (started head tics day one infusion) they are on the milds side -almost gone today.

 

I'm glad it looks like we made it though without the steroids (or a very small amount during vomiting)...At least is looks like we have, but I'm continuing with the advil/benedryl for another day, and maybe the benedryl for an additional day after that.

 

The vomiting for DS was a one time thing both times - first time started two full days after IVIG...this time late evening of second day IVIG.

 

Our drip was pretty slow...slower than it was with Dr K because DS complained of minor headache half way through day one, so they stopped the drip for a while, and then made it slower. For 37.5ml/day - over 4.5 hours each day...that is drip time only, the flush was another 20 minutes on top of that each day.

 

 

Tired mom - kids react differently to IVIG - some take several weeks to notice any improvement. I think the one caoom thing that everyone will say is that they get better in waves. You may start to see some changes in a week or two. I started to see some minor stuff I thought might be my wishful thinking with in a few days of the first ivig...but it wasn't until 4 weeks that I knew for sure it was working.

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I just wanted to jump in and say I would not do the Tylenol because it lowers glutathione, which is something our kids already have deficiency issues with. Just my opinion.

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