IVIG

[wornoutmom]

For those of you who have had IVIG done and your child developed a severe headache, did steroids help with this? If so, can I ask what was the dose? I am thinking ahead to our scheduled IVIG on the 14th/15th. The dr. prescribing the IVIG does not believe the steroid is necessary (or the antibiotics!) so I'm thinking of hitting up our pediatrician or Dr T for it for an "in case" situation, but don't really know how much to ask for . Thanks!

[Stephanie2]

YES!! My son was prescribed Methylprednisone (the first dose was 6 tablets, I think 4 mg each - it comes in a dose-pack).

 

Our doctor stressed to me the importance of filling the RX right away and having it onhand b/c you have to give it at the first sign of headache, nausea or fever to stop the cycle before it gets out of control (if they start vomitting then it's already too late b/c they can't hold down the pills). About 36 hours post IVIG my son woke up crying with a headache, fever and said he was going to vomit. I RAN to the kitchen for the pills and gave them right away. Within an hour ALL symptoms were gone. He never threw up. We did not have to finish the 6-day dose pack, only took 3 days b/c it was exacerbating yeast and bacteria in his gut.

 

Best of luck! Stephanie

For those of you who have had IVIG done and your child developed a severe headache, did steroids help with this? If so, can I ask what was the dose? I am thinking ahead to our scheduled IVIG on the 14th/15th. The dr. prescribing the IVIG does not believe the steroid is necessary (or the antibiotics!) so I'm thinking of hitting up our pediatrician or Dr T for it for an "in case" situation, but don't really know how much to ask for . Thanks!

[Ellen]

My son took Orapred (two 15 mg pills) the day after the IVIG was over (he is 95 pounds), and it helped a lot with his headache. I was told this was the maximum dosage he could have per day. He was also taking Advil but that alone was not enough to bring relief. Also, it might be helpful to let him know that he can reduce some of the side effects by drinking lots and lots of water the day before and during IVIG.

 

 

For those of you who have had IVIG done and your child developed a severe headache, did steroids help with this? If so, can I ask what was the dose? I am thinking ahead to our scheduled IVIG on the 14th/15th. The dr. prescribing the IVIG does not believe the steroid is necessary (or the antibiotics!) so I'm thinking of hitting up our pediatrician or Dr T for it for an "in case" situation, but don't really know how much to ask for . Thanks!

[melanie]

Yes danny gets prednisone (sp) In case of a headache .He hasnt needed it for the past 4 IVs .Slow infusions are the way to go for headache issues.

[melanie]

whos doing the IVIG are you in NJ?

[Fixit]

YES!! My son was prescribed Methylprednisone (the first dose was 6 tablets, I think 4 mg each - it comes in a dose-pack).

 

Our doctor stressed to me the importance of filling the RX right away and having it onhand b/c you have to give it at the first sign of headache, nausea or fever to stop the cycle before it gets out of control (if they start vomitting then it's already too late b/c they can't hold down the pills). About 36 hours post IVIG my son woke up crying with a headache, fever and said he was going to vomit. I RAN to the kitchen for the pills and gave them right away. Within an hour ALL symptoms were gone. He never threw up. We did not have to finish the 6-day dose pack, only took 3 days b/c it was exacerbating yeast and bacteria in his gut.

 

Best of luck! Stephanie

For those of you who have had IVIG done and your child developed a severe headache, did steroids help with this? If so, can I ask what was the dose? I am thinking ahead to our scheduled IVIG on ta he 14th/15th. The dr. prescribing the IG does not believe the steroid is necessary (or the antibiotics!) so I'm thinking of hitting up our pediatrician or Dr T for it for an "in case" situation, but don't really know how much to ask for . Thanks!

 

Didn't scott include a saline drip ....didn't that do the trick???

also, just checking your ds did a lower dose ivig ...correct???

one more...if you go ivig for your younger guy are you going higher dose???

[wornoutmom]

Melanie - we are in Michigan. We are planning to have the IVIG done at a local infusion center because our insurance denied the claim and they are willing to sell it to us at cost ( thanks so much to the mom who posted about the Coram infusion centers!!). The neuro is not extremely experienced with this, but has used IVIG for PANDAS with some success - he says about 50/50 and wants to help. After some negotiation we arrived at a 1.5 gm/kg dose. He wrote for a repeat after 3 weeks, but we don't have to (and wouldn't) use it that soon. He talked about IVIG being no big deal with regard to side effects,but I know from this forum it can be kind of rough. He basically referred me back to Dr T for further PANDAS guidance, but is the only doc within driving distance willing to help and he has done alot of leg work with regard to appealing with my insurance. Of course, I am kind of freaking out about it because ds is no where near as bad as he was back in the winter when we were pursuing IVIG, as the Biaxin has seemed to tamp down his rage/terror attacks which were by far the worst symptom. He is still ticcing a bit, and is consumed with worry and needing to know what is happening and needing everything clean, and has had a few panic attacks recently, but he is way more functional than he was. And now he's added IVIG to his worry list...sigh.. Can I ask how much prednisone Danny used for the headache?

[Stephanie2]

Yes, scott did the saline drip but I don't think it's enough to prevent the side effects that come later. Yes, my DS5 did the lower dose 1gr/kg. I don't know what dose I will request if either of my son's do IVIG in the future. Want to go higher, but I am learning to put my faith in scott and he says 1 gr. Working on gathering all records right now to get insurance coverage lined up (fingers crossed!).

 

Stephanie

YES!! My son was prescribed Methylprednisone (the first dose was 6 tablets, I think 4 mg each - it comes in a dose-pack).

 

Our doctor stressed to me the importance of filling the RX right away and having it onhand b/c you have to give it at the first sign of headache, nausea or fever to stop the cycle before it gets out of control (if they start vomitting then it's already too late b/c they can't hold down the pills). About 36 hours post IVIG my son woke up crying with a headache, fever and said he was going to vomit. I RAN to the kitchen for the pills and gave them right away. Within an hour ALL symptoms were gone. He never threw up. We did not have to finish the 6-day dose pack, only took 3 days b/c it was exacerbating yeast and bacteria in his gut.

 

Best of luck! Stephanie

For those of you who have had IVIG done and your child developed a severe headache, did steroids help with this? If so, can I ask what was the dose? I am thinking ahead to our scheduled IVIG on ta he 14th/15th. The dr. prescribing the IG does not believe the steroid is necessary (or the antibiotics!) so I'm thinking of hitting up our pediatrician or Dr T for it for an "in case" situation, but don't really know how much to ask for . Thanks!

 

Didn't scott include a saline drip ....didn't that do the trick???

also, just checking your ds did a lower dose ivig ...correct???

one more...if you go ivig for your younger guy are you going higher dose???

[Joan Pandas Mom]

Dr. K prescribed (2) 50 mg prednizone in case my son got a horrible headache on the plane ride home. He got it the following morning he said it was about a 7 on a scale to 10. He took 1 of the prednizones and a few hours later felt better. My son is 168 lbs.

[EAMom]

For both of our dd's IVIG's tylenol/advil (you can do both, or alternate every 3 hours) was enough to take care of headaches.