If your child is of school age and attends public school, you will most likely want to consider approaching your school counselor and requesting a 504 plan (good for 3 years and reviewed each year) be put into place. A 504 plan helps students with disabilities receive appropriate accommodations for learning. Our son's school has been very willing to work with us to keep him in school at whatever level he is able to participate and in fact, encouraged the 504 when they heard about his illness. They said they have not had a lot of students with late stage Lyme disease but many staff and faculty had heard of it or knew friends and family who have struggled with it. This is not always the case though and much probably depends on where in the US you are located. We are on the eastern seaboard where Lyme is very prevalent.
Because our son's symptoms are mostly invisible when he makes it to school, I made sure to take in a handout of symptoms school officials, nurses and faculty should be aware of and I made some brief comments to the deciding panel about some of his more major symptoms at that point in time and stressed that due to the unpredictable nature of both the diseases and healing that they would likely change over time. I also had a note from our LLMD which listed some possible accommodations including more time on classwork and tests, opting out of a test last minute even if in school the previous day (due to extreme fatigue some days after school) and sitting out of physical education classes as needed.
I explained that our son would rather attend school and get his work done on time but that he often comes home and collapses and every few weeks is too ill to attend school. A smaller committee took all of this into consideration, discussed possible future directions of the illness with me and together we came up with a short list of accommodations. Because of cognitive and behavioral changes with Lyme and tick diseases, I requested that a line was included that mentioned teachers should notify counselor and parent if any appear or change. The 504 can also be revisited as the situation changes.
Here are my tips for preparing for a 504 meeting and they are based on our son's symptoms. Each each case will vary:
Another possibility is that at some point, your child may need to take some medications during the school day. Timing of medications and supplements is especially hard if you child is attending school rather than homeschooling. However, school nurses are used to children needing medications and are usually quite accommodating. There are usually forms to be filled out and signed by your doctor so I found it helpful to print several copies and include them with the notebook we take to LLMD appointments. This way we can get them signed before when leave the office. Our school system prefers to have a signed sheet for each medication and each supplement, such as artemisinin or a probiotic so I make multiple copies and have one signed for each drug/supplement that will be taken at school. A separate form is sometimes required for inhalers.
Here are my tips for medication taking at school:
Working wife and mom to two, including a teen son who was diagnosed with Lyme and other co-infections from an unseen tick bite with no bulls-eye.
Touched by Lyme-Leland
Lyme Disease Challenge Blog
Tired of Lyme
Lyme MD-Dr. Jaller
All Things Lyme-Cameron Blog
Better Health Guy
Abounding in Hope blog-Christian family of 6 w/Lyme
Lyme-Debug Your Health
Realm of Caring