Reply To: Daughter with GBS later catogorised to CIDP and new lne of treatment

August 5, 2013 at 1:03 am

Stephanie, I just re-read your post and noticed Madeline is in pre-school. Luckily at this point socialization is what is important. Maybe you can set up extra play dates and then you can focus on curriculum based teaching at home on the days she misses. If she misses many days as we did maybe you could consider putting her baack in public Montessori to save yourself some money. When it comes time for kindergarten maybe you could ask if she could be in morning and afternoon kindergarten (in our school district kindergarten is half day) if it is not all day. That way she can make up time for the missed days. Maybe summer school could be an option as well. Not sure how a 504 would be implemented in kindergarten. I do know that this new common core curriculum decides by seven years old which trac a child is going to be on for their school career, so it is important to not fall behind. Maybe you could see if your school district offers early intervention preschool to supplement days she misses.

BTW have you guys had a port put in yet? If not, you may want to consider it, venous access is going to get difficult real fast and then you will be in a conundrum when you are due for treatment and they cannot access a vein. If you do get a port time the surgery a couple of days before surgery so that the surgeon can leave her accessed after the surgery so you will be ready to go when it is treatment time. After the surgery the area remains swollen for about 3 weeks and it would make the first access painful. Plus the incision where the port was put in was where it needed to be accessed. Oh well, just thinking out loud