reactions to ivig 6 hours AFTER infusion

Hi Dawn,
Does he get any Tylenol before he starts the ivig? that helps with migrane. I take Topamax for them prior and during and i don’t have the least bit of a headache and i noticed i don’t throw up anymore.
i don’t have any experience with the powder gamma guard as i have always been on the liquid.
I truley hope Kevin is feeling better today! Please don’t give up!
I know styaing positive for him is hard so please come here and vent if you need and keep us posted, please!!!

I just typed a reply and it disappeared so if this comes twice, I apologize.

I got the headache four days into a five day infusion. I had to take strong narcotics to get rid of it and also I felt like I had the flu. It was the powder form and I know they dripped it very fast. 700ml in 3 hours.

Most people take bendryl and tylenol before the infusion. I took benedryl and 40 mg of prednisone each time and never got the headache again.
I also switched hospitals and they dripped it over 5 hours.

I hope Kevin feels better soon. My prayers are with you.

Stacey

The infusion needs to be slowed down. Premedicate him with Tylenol or Motrin & Benadryl about 30 minutes before the start of the infusion. After 4 hours give him another dose of Tylenol or Motrin & possibly Benadryl too. Continue the Tylenol or Motrin for 1 day.

That’s what I had to do with Emily in the beginning. She had all the same symptoms. It gets better but you gotta slow that infusion down. That plays a BIG part in it. It takes awhile for the body to adjust to the IVIG. If the infusion is slower than his body will react better to it. Hopefully as time goes on you will be able to speed it up again.

Emily gets 20 grams of IVIG and her infusion lasts 2 hours & 45 minutes & we are told that is fast. She tolerates it well. KNOCKING ON WOOD!

It’s 1:20pm on Monday & I’m home now if you want to call. I’ll be here for the rest of the day.

Kelly

Dawn, If Kevin is still sick today, please take him to the hospital. I had that type of a reaction to my 2nd day of ivig, i was dx with aseptic meningitis and had to continue my iv antibiotics at home for a week after i was discharged. and no more ivig for me of any type. the headache, fever and vomiting were the worse i’ve ever had-worse then a migraine, worse then the flu, worse then 18 months of continuous throwing up during my pregnancies. i know its hard on Kevin, but it is really important for him to stay positive, depression is not easily treated in young kids under 18 yrs. i hope you will be able to chew that nurse a new#%^ after you get Kevin straightened around, so it never happens to another kid. I wish I lived close to you, i wouldn’t mind using my energy reserves on yours’ and Kevin’s behalf!!! Take care and you All are in my Prayers. Things will get better!!! Hang in There!

No kid should have to go thru this.

Reactions to different brands depends on lots of things, how it’s prepared and if it’s mixed properly, the temperature its kept at, and well ever so many things.

I was on Gammagard which has a saline mixer, and am now on Gammunex which has a sucrose mixer. So far, knock wood I’ve had far less side effect issues to the latter one. But that is me, not your Kevin. Do make a point of talking to your doc[s] about this issue and your concerns. It may mean even more tests to get the brand/type of IVIG that works best, but, I should think it’s worth it.

I wish I could hug your Kevin’s pains away, but let him know that there are probably lots of good people here wanting to do it!