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:
Our son's first follow up appointment with his LLMD nurse practitioner went well. The focus was on how to relieve his 3 biggest symptom complaints, look at his lab report and set the treatment course for the next few months. LLMDs often switch up the treatment plans and increase dosages and / or try new antibiotic or herbal strategies to confuse these stubborn infections, bring added relief and continue killing off the pathogens.
The past few weeks he has been gasping for air, just gulping it in, much of the day and night. His breathing had steadily worsened and become his number one issue. He said it feels like someone is sitting on his chest while he breathes through a straw. After a basketball game, we witnessed an hour long episode which had me quickly googling to see if a trip to the ER was in order (it apparently wasn't as his blood oxygen would show as normal) and what other patients recommend to alleviate the symptoms.
As with all things Lyme related, each person has to find what works for them. We all develop our bag of tricks and a mental list of what to try for each symptom. We tried Benadryl, Burbur herbal tincture, breathing into a paper bag, lemon water and probably a few other things I've now forgotten. Luckily the paper bag helped and he started to carry one around in his backpack to school.
So after discussing his breathing, his specialist, in consult with the clinic head, decided to have him try an albuterol inhaler which is working to his great relief. He said he feels that his glass is 80% full rather than 50%. Evidently it is an autonomic side effect of his co-infection(s) and the albuterol sends a message to his system to calm down. Maybe now he'll get better sleep and be able to wake up in the morning. Restless sleep because of the fevers cycling overnight and the breathing problems mean he's missed first period almost every day. We brought in a space heater and now he has the inhaler so maybe we'll see an improvement. We are just glad he's able to attend most of school!
Speaking of co-infections, his labs came back with a high mycoplasma count so there is yet another co-infection to treat. He is starting a heavier treatment for babesia, continuing on some of the same antibiotics and starting to take one daily for the mycoplasma rather than pulsing it. The next few months should be interesting and telling - improvement or herxing or both? He tends to feel worst on his week off of antibiotics although now he won't be completely off them, just mostly on his off weeks.
There's so much say and never enough time to get it all down, especially when dealing with the whimsy of Lyme and all its co-infections from minute to minute, hour to hour, and if we are oh so lucky, week to week. Any parent of a Lyme kid or kids knows exactly what I mean. One day I hope we will all be able to post it's now month to month or better yet years to years or best yet - never again. But of course, we are now all paranoid about that possible future tick bite that causes the merry-go-round to start back up with re-infection or re-activation.
I started this website because when I began my family's research into what I thought at the time was just late stage Lyme in early November 2015, and I quickly realized what a morass we'd waded into. Quickly it became apparent that this was not going to be one or two months of straight doxycycline and that our son did not just have Lyme but other co-infections too from his newly emerging symptoms, particularly during that harsh first month on doxy. After spending a month of my free time researching as many aspects of Lyme as I could and then all these other infections and how they can be treated, I realized I never really saw a site that was geared just toward parents with links to answers of some of the key questions I had and imagined all parents new to this would have.
I also discovered that Lyme is highly politicized which I knew almost right away from online discussions about how to find these elusive LLMDs whose names were not to be posted publicly as well as the lack of insurance coverage for treatment lasting beyond 1-2 months. It was incredibly eye opening and maddening to see how such ill patients and their LLMD doctors are being treated. At the same time, an urge to bury my head in the sand in denial of what lay ahead competed with an obsessive need to figure out which of the many treatment paths we should direct our son to first, seeing as he hopefully has many, many years of life ahead of him.
I quickly realized that most parents of kids with Lyme barely had time to post online because their time was completely consumed by dealing with their immediate situation and when they did it was to post their family story. In fact, because of the complexity of Lyme, reading these online stories was the best way to learn and confirm what our son's positive Lyme test really meant and how little pediatricians or mainstream doctors following the CDC guidelines know. A whole world of co-infections, never once mentioned by our pediatrician, opened up when started googling terms like "drenching night sweats" which it turns out are usually more related to mycoplasma and babesia co-infections rather than Lyme disease. It turns out most Lyme patients actually have multiple infections to treat. That is a hard concept to wrap one's head around - multiple infections! Most people who are ill are dealing with 1 condition or infection - we Lyme parents are dealing with multiple infections which require so multiple treatments for our kids, who are the real sufferers here. Our son looks perfectly fine on the outside - healthy when he's out and about and not sofa bound with black circles under his eyes and all pale and exhausted, but he's a hot mess on the inside ALL THE TIME- an extremely hot mess that no one outside his immediate family can see. Which leads to schooling and how and what to let them know and how to advocate for him since he may seem fine to his teachers who don't know he collapses after school for the rest of the day. Wow, the topics for this blog are never-ending.
Now that we are a few months into the journey, I hope I will continue to find some free time here and there to post about topics of interest or issues we as parents of Lyme kids are facing. I would also like to give a shout out to all the families with multiple Lyme patients, often including the parents who struggle with their own infections while trying to heal their children at the same time.
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.
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