This is the letter we gave to the head of our son's school when he started kindergarten, as well as all the staff who might be in contact with him. We have adapted it over the last few years, but it has all the information we wanted the school to have, since they didn't know him at all yet. We give them the letter every year, as he no longer gets tested weekly, and his infusions are less frequent. It's about two pages long.
I hope the school's administration is understanding and willing to work with you. The parents here have dealt with every possible situation at school, and are a great resource.
Good luck, and I hope Liam has a great time at school!
____________________________
We would like to give you some information about our son ________’s medical condition, immune thrombocytopenic purpura (ITP), a non-contagious blood disorder in which his platelets are destroyed by his immune system. The low platelet count predisposes him to easy bruising, which may occur after minor trauma or for no apparent reason; petechiae, pinpoint reddish-purple spots that often occur in groups and may look like a rash; and slow to resolve nosebleeds, which, gratefully, are rare. In children, ITP is usually acute and of short duration, but ______ was diagnosed in 2003, and has had it long enough for it to be considered chronic. It’s possible that it will resolve itself, as can happen even after several years. In the meantime, we’re learning to live with it.
Harry is under the regular care of Dr. __________, a hematologist at ________________, where we get his blood checked frequently, sometimes as often as once a week. His check-ups can take all morning, depending on whether the doctor is running late and/or ________ is willing to leave. (Yes, they have a great playroom.) Unfortunately, the doctor is often late for our appointments, since he sees his patients in the hospital before going to the clinic to see his outpatients.
__________ gets infusions of gamma globulin (IVIG) intravenously at the center every six weeks or so, and sometimes more frequently. The infusion procedure lasts all day, and there is no way to shorten the duration of the treatment. The IVIG surrounds his platelets so that they are not destroyed so quickly. In a healthy person, the normal range for the platelet count is 150,000 to 450,000; _______’s count is in the normal range after an infusion, after which it drops over time, sometimes precipitously, until it reaches 25,000 or less, and then he is infused again. Once his platelet level drops below 25,000, there is an extremely slight risk of intracranial hemorrhage (ICH), which is the primary reason we treat him.
This potential for intracranial bleeding is our greatest concern. Although very rare, an ICH can be fatal. If _________ hits his head or his neck, or if he is hit in the abdomen, you must contact us immediately, so we can determine whether he needs acute medical care. We also ask that you contact us if he is lethargic or vomiting, for the same reason. If he has a significant nosebleed, please call if it takes longer than ten minutes to stop, or if you notice any sudden, new, big bruises.
Depending on his platelet count, timing of treatment or ongoing bruising, we may limit or restrict ________’s activities, and we will keep you informed as necessary. There will be days when we won’t want him to participate in gym, and we will need to figure out alternatives ahead of time. As you have seen, _________ is a happy, active child, and we want him to be as active as his classmates. So far it hasn’t been necessary to inform the children in _________’s classes about his ITP, but that may change as they get older and as his friends notice that he misses more school than others in the class. We will make arrangements for someone to come to speak to the class if necessary.
The IVIG has not had any apparent effect on ________’s cognitive development. The treatment is not chemotherapy and there have been no other untoward effects. He has not required transfusions of any kind. He responds well to the treatments and they seem to hold him for about a month and a half at this point, as mentioned above, but the intervals have been as long as thirteen weeks and as short as four. He does not require the administration of any medication at school. We are always on the lookout for any emotional changes based on his frequent medical visits and treatments -- there don’t seem to be any that are significant.
We will keep you updated if there are any changes in _______’s needs. We have not yet determined whether any special accommodations will need to be made for him; if so, we will let you know and discuss with you as soon as possible.
_________’s safety is paramount. We appreciate your working with us to ensure his well-being. We are, of course, available to discuss any of this with you, and to answer any questions you or other staff may have. Please feel free to contact either of us at any time. __________’s doctors’ numbers are below as well for your reference.
Arrggg!!!