Saturday, October 3, 2009
I wanted to post this little tid bit about children with Cystic Fibrosis and school. I get a lot of questions by CF parents about their kids attending school and my experiences while growing up. The questions range from "how did you tell the teachers" to "should I even put my child in public school" to ""did you hide your enzymes from the other kids". I of course will answer these questions on the blog at some point in the future (if I haven't already), but if you want my feelings on these subjects immediately, you can of course contact me anytime.
Please read through the small set of questions and answers and if time permits, answer some of the questions that I have listed below. We had a great discussion last week and I hope to keep the good times rollin'!
I’m worried that my child may be treated differently if the school knows he has CF.
This is a concern parents of newly diagnosed children often express. However, this is not a common complaint of parents of CF kids. For the most part, children with CF attend school just like every other child. Students with CF are entitled to modifications in school as any other child with a chronic illness would be.Can my child carry his enzymes with him at school?
It depends. Each state has its own rules about medications in public schools. If your child goes to a private school, there’s a good chance school administrators make decisions on a case-by-case basis. In public schools, enzymes are considered medications and need to be kept in the nurse’s office. However, if your child has a 504 plan or a medical IEP*, you can request that your child be able to carry his own enzymes as a modification. The 504 plan and medical IEP fall under federal law and supersede state laws.
* IEP stands for Individualized Education Plan
My child doesn’t have enough time to eat lunch.
Request that your child be permitted to leave a couple minutes early from his last period before lunch so he can pick up his enzymes from the nurse’s office and still have enough time to eat. This request can also be made for children on a 504 plan or medical IEP.
What do I do if another student provides misinformation about CF to my child?
Use this as an opportunity to educate the class about CF. You as a parent can do the presentation yourself, or with your child. Perhaps your child would rather do it alone. But you may not want your child to be present because children can ask questions that may be harsh for your child to hear.
This article was taken from the John Hopkins CF Center
So, as a parent, have you had any negative experiences with your child and school? How does the school handle their enzymes? Do you believe the CF children should be home-schooled as to not expose them to harmful germs that other children may carry?
I'd love to hear your thoughts on this topic and answers to the questions above. Any more information on this topic will be very beneficial to the CF community.
Friday, October 2, 2009
Thursday, October 1, 2009
Hi Ronnie,I saw an invitation from you for queries by new parents. My daughter has a four-month-old son who was diagnosed at two weeks old; she does not have time for Facebook or even for emailing right now. Our little Aidan sleeps only around ten hours out of twenty-four; he gets so tired, sleepy, and cranky during the day but can't fall asleep. When he does go to sleep during the day he only sleeps a short time.My daughter has mentioned this problem at her treatment center (Vanderbilt) several times but they don't seem to grasp the severity of the behavior - although they do recognize he isn't gaining the weight he should, given the number of calories he ingests. I had this wild idea that maybe his electrolytes are depleted when he is so "worked up" and "hyper," and perhaps several ounces of Pedialyte could help. Table salt is added to his formula but maybe there are other elements missing from his body. Do you have any other ideas about this problem - have you heard of this problem? They are desperate for rest and peace!I live three to four hours away and cannot relieve my daughter very often!Hoping to hear from you soon,Aidan's grandmother (Name Withheld)