Post IVIG 10weeks Having "new pages"

[Iowadawn]

Our 10 1/2 yo son is 10 weeks post IVIG. It's been pretty bumpy lately. My main question is if you post IVIG'ers have witnessed the "return" of behaviors that you have never had in the first place. I discovered that Evan has had some wetting issues that he now says has happened since IVIG. Also had a meltdown yesterday that included him saying that "there are people throwing rocks at him"., "hurting him", "out to get him", " really bad thoughts". He said this started in school last week. This was a different type of fight or flight than we have had. At the time it sounded as if the "people" were right there, but I think it was more of his thoughts gone wild. We have seen some encouraging improvements after many years of this. I think the trend is positive among the bumps. The last couple weeks have been disconcerting, though. Dr. K did put him on 875 Augmentin 2x/day. For three months post IVIG, for now. So, have any of you heard of flipping back to pages that weren't there to begin with! Or is different-"good"?? Dawn

[sf_mom]

Yes, we even saw new TICS appear then disappear but after exposure to strep (week 5 1/2 post first IVIG) and a continued increase in symptoms........ (week 6 through week 8 post first IVIG) first we had complaints of headaches, then complaints of stomach aches (daily), then increase in mood liability, then creeping OCD and intrusive thoughts we had a second IVIG. He is 12 days post his second IVIG treatment and his only symptoms are physical complaints, moodiness when tired and continued chapped lips/dark circles that are starting to resolve.

 

 

-Wendy

[Worried_Dad]

Yep, our son's 1st-ever vocal tic (a yipping bark that eventually turned into an ear-splitting screech) began about 6 weeks after IVIG round 1, even though we saw a lot of progress in other areas.

[KeithandElizabeth]

Yes, we have seen things that we have not seen since before the steroid burst pre-IVIG. Overall, we are since tremendous improvement, but there are many bumps!!! For instance, we are doing monthly IVIG and the one symptom that has never gone away in the three months is frequent urination (sometimes every minute) After our last IVIG, the frequent urination suddenly stopped and all of a sudden our son developed an old fear of swallowing his legos.

 

Elizabeth