Hi Jim! I’m so excited for you to start your infusions!! I hope that they bring you relief!!

My son tried IVIg last summer. Dr Oaklander prescribed Gammagard for 4 consecutive days and then have 3 weeks off and then do it again. He did this for 3 months. The nurse that came to our home to administer the infusion said she had never seen this dose before and it was pretty intense. Each infusion lasted about 3 hours. I’m not going to sugarcoat it, he had a tough time with them. They gave him a horrible migraine (to the point of vomiting) and he just felt “yucky” for a couple of days afterwards. But we noticed if we gave him Benadryl and Advil the morning of and then continued that every 4-6 hours, he was able to handle the migraines a bit better. They also started giving him a bag of fluids via IV both before and after the infusion and that seemed to help as well.

All this, and unfortunately he did not get any pain relief from the treatment. Dr Oaklander let him decide if he wanted to continue on or stop the infusions after 3 months. She wasn’t too optimistic about seeing any positive changes but willing to give it some more time, but she let him decide since and he said no more. I wished he went another couple of months or they had played with how often he got it so it wasn’t quite so hard on him. Maybe something to think about in the future.

I’m hoping that your dose is a bit more spread out and not quite as intense as his, so you have little to no side effects!! I wished he had an in person doctor overseeing his infusion rather than her 1,000 miles away just getting a report from the nurse. It could’ve been handled better.

He is driving now, but just a regular car. He’s adamant about not needing any modifications yet and hates being different than his peers, so he’ll continue to put it off for as long as possible. He’ll go to college next year, so I’ll be curious how he handles how much walking is involved on a college campus. He just wants to be normal. We don’t have a great neurologist in town here (Austin, TX) since he’s still considered pediatric (17 years old) the adult neurologist still won’t touch him until his actual birthday in May. He’s seeing a pain specialist, but he’s running out of ideas.

Please let me know if you have any more questions about IVIg! I’m happy to share any of his experience especially if it helps someone else!!
Best of luck to you!

Kate

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