nancy/amanda

[Guest guest]

hope I got those names right!

I just want to pipe in b/c you said something about adjusting the IVIG

rates. We have only done the IVIG two times so far, and the first time

my 8 yr old daughter had a terrible backache, low temp, and the next

day very flu like symptoms, like achiness, tummy ache, sore throat, etc.

The second time we slowed her infusion rate, so it took longer to get

to her max rate.......just like an hour and a half longer, and she had

no side effects really, and the next day felt fantastic!! So I guess

sometimes the side effects warrant tinkering with the infusion

rate--how fast its going in----at any rate you would probably get the

good effects of the IVIG, but at the slower rate if she cant handle

it, maybe slowing it down would help her out.

My kids are not high schoolers, but in kdg and 2nd grade, and we have

504 plans for each of them, and both were very easy for us to do.

Another option we have utilized is that many schools have a National

honors society or Athletic leadership program and these students need

community service credits and tutoring counts toward that.......it

worked out well for us and helped keep the kids up in school work.

Something else we did for SAvannah (8) when she missed nearly a whole

month of school was to put in her 504 plan that her make up work only

needs to be done every other question on one side of the page, much of

her work(as long as she is catching onto it) is just deleted and

counted the same at report card time. Her absences cannot be counted

against her as far as being held back or anything like that. The 504

has worked out very well for us.

Valarie

mom to

Olivia,10,asthma, allergies

Savannah,8,asthma, allergies, CVID

Donovan, 6, asthma, allergies, CVID, TBM

Brennan, 4, asthma, allergies, CVID, TBLM