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There are some forum members who have dealt with this.

You may need to bump the post if you see it fall off the first page...so more people will view it.

This article may be useful: www.happyheartfamilies.com/articles/article/6447390/159132.htm

And this will bump your thread up again too!!

Hi,
We have dealt with this - not specifically rests at school because he was either okay and muddled through or was so bad I had to pick him up. He missed a lot of school days but his middle school was incredibly understanding. It is very tricky in our district because to have a home teacher lined up you need and IEP plus they schedule 2 weeks out for brief visits and that won't work with our kids who seem able to attend school sporadically!

His 504 has things like he and teacher can agree on mutual time deadlines if he comes in and says he can't take a test or turn in work on time because he was sick/tired etc. He could self monitor in PE etc. They most likely would have written in if he needed to rest at the health clinic. They encouraged us to put in whatever we thought he would need.

I do have a blog post on my website about 504s. See link in my signature below. Also DS started HS and a whole new group of teachers and admin who don't know him or his situation. He is an extreme extrovert and looks super strong and fit so I knew it was likely they wouldn't believe him if he even admitted he is sick. So I decided to be proactive. Teachers wouldn't believe he was sick based on what they see of him in class and in the hall. Also he had a great summer - only 2-3 ill days - a huge difference from last school year which was his first 6 months of treatment.

His new counselor suggested I write a note and send it to his teachers. I will post some of it here and perhaps parts of it will be useful to others. Lyme isn't a dirty word here yet but depending on the attitudes you may not want to mention it. I tried to explain the invisible part of the disease. He actually got sick/fever and hot flashes the second day of class late in the day and had the exhaustion but toughed it out. We decided not to tell the teacher because he rebounded and went to school the next day. Also this year he has block scheduling which may help if he falls ill again later this fall.

Here's some of the text.

We want to provide some additional information about XXXX, a student of yours this year with a 504 plan who is in long-term treatment for chronic, multi-systemic inflammatory illnesses caused by ticks, including Lyme among others. He has several bacterial and maleria-type illnesses that will continue to be treated with various antibiotics and anti-malerials this entire school year. He has been in treatment since XXXX 2015 and improved a great deal this summer. However, relapses can happen during fall through the end of the school year and he has suffered from them the past two winters. We are very hopeful that he is far enough along in treatment that he will not relapse much or at all this winter. Nevertheless, the symptoms of these diseases come and go with no warning so in an effort to be prepared we are reaching out early. He is an extrovert and will likely appear to be a picture of good health but there can be a lot going on under the surface.


Because the diseases are affecting his central nervous system, they can cause many "invisible" symptoms related to his heart, breathing, temperature regulation (fevers off and on all day) and can include cognitive (called brain fog) and/or behavioral changes. It is sort of like having a permanent flu. As part of his 504, we ask that you let us know if you notice any differences in understanding coursework or behavior. He also has had knee and joint swelling and pain periodically so he may need to self-regulate his activity level in physical education class. Last year he had to sleep in most days. We hope this will not be the case with the later start.


When you see him in class, he will appear to be well because if he is able to get up, his symptoms are invisible that day, known only to him, and he will attend school in spite of them. On the days he is absent from your class, he suffers from extreme exhaustion where he is unable to think clearly or do anything more than get to the bathroom and collapse back into bed. Also, while he may appear to be fine at school when you see him, some days he gets home and pretty much collapses and is unable to get up again or study/do anything more. If this happens again this year, we will work with him to see he stays in touch with you about missing work or work he will need an extension on. Block scheduling will hopefully help with this.


The one symptom which thankfully has been quite rare, but could occur, is a sudden onset of rapid breathing, turning into hyperventilation where his fingers may clench and his face/upper body may twitch or jerk. Since he's been sick, he feels like he's getting about 60% of a breath and sometimes, without warning, that feeling of not getting enough oxygen drops to 20% and he feels like he's suffocating. He uses an albuterol inhaler to help control his breathing issues but at times it has spiraled and he must then take a heavier drug in pill form to smooth his muscles and send a message to his brain. This is not an asthma attack so his oxygen levels are okay but signals to his brain are mixed up. That medication is in the clinic and they will bring it to your class if you call and let them know.


Possible symptoms you may notice:
extreme exhaustion (generally would miss school)
tired in mornings
brain fog/lack of focus (possibility of cognitive/behavioral changes)
breathing issues (+invisible ones: fevers/racing heart when standing/lightheaded)
swollen joints/pain, generally knee, wears brace

We very much appreciate your understanding and patience with this unusual situation. Please don't hesitate to let us know if you have any questions or concerns at any time throughout the year.

Yes, having staff know people suffering from Lyme helps tremendously. The day of the 504 meeting they told me a parent had come in from Switzerland that morning from receiving Lyme treatment there. Thus, it was on their radar even though it didn't sound like they had many students with chronic Lyme problems. The front desk aid's good friend has suffered greatly with Lyme too. The health aide's husband had an incredibly rare seizure infection from a mosquito in a neighboring state where he had camped so that helped too. Also I could tell right away that the district psychologist they had there was on board for it immediately. I know we got lucky.

Then the tutor we hired a few months later when DS was falling behind was super accommodating with last minute changes because several of her close friends are suffering from it. Our neighborhood is full of folks with it and the pharmacy recognized the specialty clinic prescription list and that a different person, not Dr. J had signed it. I found that shocking. It's rampant here now. I just don't get how it's not on the national radar.