How long after IVIG did it take for behavior to settle down?

[momto2pandas]

We are 1.5 weeks out, and although there are many improvements, ds6 now definitely has a daily tendency to react explosively and disrespectively to any little thing - at least as bad as during an bad exacerbation, and worse than before IVIG while we were on antibiotics alone. Similarly, ds4 now seems to be on a very predictable circadian rhythm where he has bad OCD - again at least as bad as during a previous bad exacerbation - from about 3-4:30 pm each day (when he seems extremely tired - and resting in bed seems to help), but not at other times. This pattern has been stable in both of them for several days. Overall, I would say that they are better off than they were during bad exacerbations before we had any treatment, but definitely worse off (from a parenting frustration point of view) than they were right before we had IVIG when we were on antibiotics only. We're wondering how long we have to wait before we can assess whether the treatment made them better or worse.... Dr. B thought that ds4 in particular would need several treatments to settle down, but again, we're not sure if what we're seeing now is just transitional or whether we're seeing a new and different baseline, with some great improvements but other worsenings.

 

In terms of improvements, we're seeing improved cognition, pretty much disappeared anxiety, disappeared tics, better energy and physical coordination, better overall mood, better speech. But these explosions of PANDAS activity really are problematic. We used to see this kind of behavior only occasionally and mildly, and now it's daily and pretty bad - even though it occupies only a small fraction of the day.

[faith]

Did only one child have the ivig, or two of them?

 

in terms of better, how can you really tell after 10 days or so? unless you know a child had bad anxiety every single day no matter what, then I would think that would be more apparent, but just don't know about how to gauge that. we havn't had treatments here, so not telling of my experience,..but I do see things like that come and go in my child, or at least be more apparent some days than others, just depends on the situation. I mean one day he could look like he feels like doing school work and other days, more interested in playing or 'doing it later'....

 

why does dr. b. think you will need more than one treatment at this point? what is the reasoning?

Edited May 8, 2010 by faith

[KeithandElizabeth]

The first 6-8 weeks can be very rough!!! You should then still see "bumps" after this time period, but your lows should be higher and I have heard that you will see continued healing throughout the year.

 

Elizabeth

[sf_mom]

In our situation the first week was always rough post IVIG 'he could run a marathon'........ Now, looking back over the 3 treatments its as if symptoms have faded out. He still TICs 1 to 5 times a day but its so subtle that I really, really have to watch him close to catch him, he still has chapped lips that come and go, no OCD, normal reasonable mood liability, sleeps through night, no bad dreams, no physical complaints other than being tired.... He is a different child. For all the worry and difficulties you are seeing currently, it will be worth it! Hang in there.

 

Try to help his body eliminate toxins as best possible to help with the Herxing Reaction.

 

* Epsom salt baths

* Charcoal pills or bentonite clay

* Sweating

* Anything anti-inflammatory

Edited May 8, 2010 by SF Mom