Need encouragement

[cobbiemommy]

Ryan just had his first total flaming meltdown post IVIg. This includes screaming, crying, wanting a normal life, hating his sister and father. We are five weeks and two days since IVIg. I am just recovering from the stomach flu, so I hope that he did not get whatever I had. We see the LLMD in 7 days and we have already doubled the Augmentin to 500 mg twice a day. Please tell me this is just a blip. Things are so uneven right now, I can't tell if we are trending up or down.

[nevergiveup]

Sawtooth recovery. That's sums it up from my experience. After ivig is a hard time. If the trend continues downward maybe another ivig will help a lot. My dd didn't start to see dramatic benefit until 4 to 6 months after monthly ivig's and still her disease is sawtooth, still impacted by infection, like all autoimmune diseases. It can be sooooo disappointing to see severe symptoms again and scary. It may disappear as fast as it came.

Ryan just had his first total flaming meltdown post IVIg. This includes screaming, crying, wanting a normal life, hating his sister and father. We are five weeks and two days since IVIg. I am just recovering from the stomach flu, so I hope that he did not get whatever I had. We see the LLMD in 7 days and we have already doubled the Augmentin to 500 mg twice a day. Please tell me this is just a blip. Things are so uneven right now, I can't tell if we are trending up or down.

[momaine]

Ryan just had his first total flaming meltdown post IVIg. This includes screaming, crying, wanting a normal life, hating his sister and father. We are five weeks and two days since IVIg. I am just recovering from the stomach flu, so I hope that he did not get whatever I had. We see the LLMD in 7 days and we have already doubled the Augmentin to 500 mg twice a day. Please tell me this is just a blip. Things are so uneven right now, I can't tell if we are trending up or down.

 

My dd had a few difficult days around that time post ivig, then things leveled off again and are holding steady, it seems. It's hard to put a number to it but my dd13 (who has had this for 4 years now) is at least 60-70% better than she was pre-ivig. We have a second one this week and I'm hoping for more improvement. It's hard to not panic when things take a downward turn. I think journaling with a graph of behaviors is the best way to look at the big picture. I have to do it periodically and compare it to where we were last winter when I'm getting worried. It alwyas makes me feel better.

 

Hang in there.

Angela