Use of steroids to prevent/treat IVIG side-effects

[Stephanie2]

I haven't heard of this before, so I thought I would post my "post-IVIG" experience for anyone who is interested. Scott Smith, PA with Bradstreet's office (Scott do you read these, can you tell I am a big fan?!) is the ordering practitioner of IVIG for my son. His approach is to start the child on a Medrol Pack (methylprednisolone) as soon as he begins to develop the headache/nausea. He told me to fill the RX and have it at home so that I can start it within minutes of any symptoms. Sure enough at 6 am (about 36 hours post-tx) my son woke up with full-throttle headache, nausea, fever. He was crying so hard and just felt terrible! I immediately started the Medrol Pack (2 pills) and told him to go back to sleep. He kept telling me that he wanted to throw up and I told him to lay down and don't get up and don't let yourself throw up (didn't want him to throw up the steroid). Luckily he fell back to sleep and woke up 2 hours later completely cured! No fever, headache, nausea. He went about the rest of his day like nothing happened!

 

Oh, I was also instructed to start a Motrin protocol immediately after the IVIG: Motrin every 4-6 hours for 72 hours. Not sure why, maybe to stop the inflammation and increase in pandas behaviors that follow IVIG?

 

Anyway, just wanted to share...

 

Stephanie

[zazuk2010]

Thank you so much for posting this. My ds 5 had a horrible time with IVIG. So bad that we ended up in the ER for 12 hours. We think he got aseptic meningitis and that is why the headache was so bad. We are going to do another IVIG and I have been trying to figure out what to do to help prevent a repeat. This is great info.

 

best, Kari

[melanie]

Thank you so much for posting this. My ds 5 had a horrible time with IVIG. So bad that we ended up in the ER for 12 hours. We think he got aseptic meningitis and that is why the headache was so bad. We are going to do another IVIG and I have been trying to figure out what to do to help prevent a repeat. This is great info.

 

best, Kari

 

 

Hi

 

Danny gets solimedrol(sp) a steroid and 25mg benadryl prior to the IV He has had 4 at home.I also have a script for prednisone 30 mg in case a headache occurs.The 1st 2 IVs he had a headache and I gave him the prednisone He was also using a different IVIG .TYhe nurse slowed the infusion on the 3rd and he did much better headache wise.The last IV (friday) was great switched to gamunex and 4 1/2 hrs infusion .no headache .

 

Yes I know my immunologist uses steroids during and after IVs

 

Melanie

 

ps hows your child doing post IV

[tapiash]

Thank you so much for posting this. My ds 5 had a horrible time with IVIG. So bad that we ended up in the ER for 12 hours. We think he got aseptic meningitis and that is why the headache was so bad. We are going to do another IVIG and I have been trying to figure out what to do to help prevent a repeat. This is great info.

 

best, Kari

 

 

Hi

 

Danny gets solimedrol(sp) a steroid and 25mg benadryl prior to the IV He has had 4 at home.I also have a script for prednisone 30 mg in case a headache occurs.The 1st 2 IVs he had a headache and I gave him the prednisone He was also using a different IVIG .TYhe nurse slowed the infusion on the 3rd and he did much better headache wise.The last IV (friday) was great switched to gamunex and 4 1/2 hrs infusion .no headache .

 

Yes I know my immunologist uses steroids during and after IVs

 

Melanie

 

ps hows your child doing post IV

 

How many prednisone pills did you give him before and after

[momaine]

My dd had ivig with Dr. B 10 days ago. they gave her Motrin, Benedryl, and prednisone prophylactically. She had NO symptoms for the first 3 days but days 4-6 had headaches which were mostly relieved with Advil.

Angela

[laurenjohnsonsmom]

Agreed! It's very common to have severe headache post ivig as my daughter did after ivig #1. Dr. B's office gave her predisone before started day two and it worked like a charm. IV fluids before and after the ivig fluids helps substancially as well. We did this during ivig #2 and didn't need to use the steroids until the day after we finished ivig and returned home (headache returned). We did one dose of predisone 30mg (she's 107 lbs) and it worked quickly. The key is to get it into them before their stomach gets to upset so that they don't throw it up! Try keeping them laying down or getting th back to sleep.

 

From what parents and doctors tell ne daily, this is pretty standard practice.

 

Lynn

www.pandasresourcenetwork.org

educate, communicate, cure

 

My dd had ivig with Dr. B 10 days ago. they gave her Motrin, Benedryl, and prednisone prophylactically. She had NO symptoms for the first 3 days but days 4-6 had headaches which were mostly relieved with Advil.

Angela