There is full body flush and a partcial body flush. Full body flushing makes the temperature of the body rise and all of the normal skin would turn red and the spots would turn white with a purplish ring around them. And the particial flushing is when just some of the normal skin would turn red with body temperture rises also. Sometimes she had convulsions because the flushing was so bad. During one of these seizures we called the doctor and he told us to put her in the bathtub with cold water and ice to bring down her body temp. This made the convulsions much worse and I took her out and put her in a sleeping bag and covered her with yet another sleeping bag. We left her there for about 1/2 hour before the convulsion began to cease. What made me go against what the doctors said I have no idea, but it saved her life I was told later.
These are some of the things I did and the reasons why.
Jackie's first year to attend school was the third grade. I was very concerned about how the children would react to her. I met with the teachers (2), principal, and school nurse. Later I had to go see the school superintendent for the State of Idaho.
The school nurse came up with a cool idea. Anyway it worked for Jackie. On the first day of school, the nurse introduced Jackie (and explain that she was not contageous and told a little bit about her disease) Then she let Jackie explain more about the disease disease and explain how important personal hygiene was. Personal hygiene was included so the children would not make fun of her using a seperate bathroom. One with very low traffic - away from the on slot of children. She explained why it was important (and everyone) to wash their hands throughly because she was prone to staff infection with because she usually had open blisters. Also that she brushed her teeth after every meal and intended on doing so in school. (This (brushing teeth) the girls carried on through high school - they always carried their toothbrushes to school - and used them) A few of their friends did also. It was important to catch a cavity early because novicaine could not be used on her.
As a result of the talk Jackie gave in class -- she ended up with a number of children that were her best friends through 8th grade. Some of the children began smoking and drinking at the end of the 8th grade - so she let them drop. Some of them stayed with Jackie through high school and they are close friends today.
Here in Idaho, if you miss 10 days of school in a row - you repeat the grade. That was why I talked to the Superintendent both of the school district and later the Idaho State School Superintendent. The later came up with the idea that as long as Jackie kept up with all the work no matter how many days she missed - that she would be graded on the work - not the time absent from school. Otherwise he informed the school that they would have to pay to have her home taught again.
There were years that I had to fight with principals and teachers to go by what the superintendent said - but we always won.
If the teachers or principal of the year was really bone headed, I threatened to go back to the superintendent or the Idaho newspaper---that always worked.
Yes, you will always have those that make fun of - ask stupid questions ---Teachers and parents I found to be the worst. As an adult, you would think they would have more feelings - but not true.
Her crowd of friends - in elementary - which was quite large shielded her from a lot of things. They also told her to take her medicine if she began flushing.
However, the unkind always wormed their way in - kicking her to watch her blister and flush - it took awhile but we finally stopped that one.
Yelling teachers were always trouble for Jackie (she was not used to this at home) no matter who the teacher yelled at - it upset Jackie, she flushed and it upset her stomach! I would explain to the teacher - it would be better for awhile---