I had issues for the longest time with reflux. 3 weeks ago, when I 1st went to the ER, they thought something was wrong with the tube connecting my stomach to my small intestine. They put me on Prilosec to help control the acid in my stomach and help with the nausea. After useing the PPI for a while those symptoms reduced a lot. I would let his doctor know about it and hope they prescribe something similar.

It's different for everyone. I know that's not what you want to hear. For mine I'm still low but every week I get labs to monitor. CBC, liver panel, LDH and basic metabolic. If he hasn't yet, I would look at getting a bone marrow biopsy to see if there are any issues with keeping up with production. Mine has been steadily increasing, but it's different for everyone. I'm only 3 weeks into this lifelong journey. He is very lucky to be getting Ultomiris since my insurance won't cover it. Take it one day at a time and don't push it too hard. Recovery and returning to normalcy isnt a sprint, its a marathon.

Hi Deborah,

I'm sorry that the first response to your concern came from an AI that seems more frightening than reassuring in its comment.

What your son is experiencing is something I've had with PNH. It's happened to me several times, and it's a good idea to consult with a doctor because they can prescribe treatment and perhaps order an abdominal ultrasound.

Is he taking any medication for PNH? Are the nausea and reflux accompanied by any pain?

While you're consulting with the doctor, a bland diet for a few days might help your son. For me, avoiding foods with saturated fats and carbonated drinks, as well as eating a little more slowly, worked.

I hope he recovers soon and can enjoy his meals again.

Hugs.

Hi Julia. She's not a specialist in the disease but my son's hematologist diagnosed him and has provided excellent care. My son goes to CS Mott Hospital at University of Michigan. He sees Dr Blase. She's wonderful. Is your son getting Solaris or Ultomiris?

Hi Deborah , my son was diagnosed one month ago, we are here in Michigan- Macomb, would you mind to tell me if you’ve found a PNH specialist ? He will starts the infusion next Monday . Thank you