Pomerno

[myrose]

I am posting instead of a PM. Just because I am sure that everyone else is also wondering how your daughter is doing. I have been thinking of her. Is there a change....better or worse? Did you figure anything out? Let us know okay.

[pmoreno]

I am posting instead of a PM. Just because I am sure that everyone else is also wondering how your daughter is doing. I have been thinking of her. Is there a change....better or worse? Did you figure anything out? Let us know okay.

 

 

Hi,

I think I may have replied to another post, so I'm not sure what you've read so far, but if I repeat anything, just skim over it. Gaby had 80% remission for the first 2 weeks IVIG, then by 3rd week behaviors crept in, 4th week more, 5th & 6th week frequently not concentrating well, a lot of fears (especially by late afternoon) about "something" bothering her - telling her things, trying to steal something from her. Frequently saying she's sorry. Still waking up nightly for about 2 hrs. - then tired in AM - but going to school and functioning with some prompting from teachers. She has not had any tics (eye blinking, squinting, hand movements) really since the IVIG. This current behavior is manageable, its just that she's not learning much right now and seems very immature (a lot of imaginative play with her stuffed animals -talking through and to them). However, I am trying to be patient - have talked with a mother whose daughter is 10 now - had IVIG at 7, had one whole year of behaviors (although they gradually improved) Now has been symptom free for 2 years. She was on abx for the first year. Pat