TOUCHED BY LYME: Is it Lyme or “school avoidance”?
I recently received the following message from a school nurse:
We have a 12-year-old student who was diagnosed with mono in early October. He has continued to miss a large amount of school and was diagnosed with Lyme disease last week. Mom is telling us that it was transmitted to him in-utero. Is this a valid method of transmission?
Also, what should our expectations be as far as school attendance and participation in normal middle school activities? I suspect that there is some school avoidance going on as well but don’t want to assume that if this is truly the course of the disease. Thank you for any insight into this situation.
Here’s my reply:
Yes, unfortunately, Lyme disease can be transmitted in-utero. Find out more about this on our website, which provides many useful links for more information.
In some cases, the child may have been born with Lyme, but the immune system held it at bay until something else changed. In the case you cite, the triggering event might have been the mono. Also, in many cases, the onset of puberty seems to stir up previously undetected Lyme disease.
Regarding expectations of children with Lyme disease and schooling: alas, this can be difficult terrain to navigate. Lyme can affect children in many ways that interfere with the educational process. It can profoundly interrupt their ability to obtain restorative sleep, contributing to fatigue and difficulties focusing on school work. Children with Lyme may have gastrointestinal upsets requiring almost constant access to a bathroom. Some students suffer from sensory overload or intense headaches that make it hard to function in a typical classroom. Others may have cognitive issues such as problems with short-term memory, organizing their thoughts, and following through on assigned tasks.
Coping strategies for such circumstances are included in the book, “When Your Child Has Lyme Disease: A Parent’s Survival Guide,” which I co-authored with Sandra Berenbaum, LCSW, a psychotherapist who specializes in counseling families with Lyme disease. Much of the book deals with school-related issues. You and other school staffers might find this information helpful as you work with this family to meet the child’s educational needs.
Some children with Lyme are so impaired that they have to leave the regular classroom, perhaps having home-bound instruction through the district or some version of independent homeschooling. However, others are able to continue going to school, with appropriate accommodations to their situation. Some may benefit from a 504 plan or an IEP.
Thank you for contacting us. According to the CDC, more than 300,000 people are diagnosed with Lyme every year in the US–and 25% of them are children between the ages of 5 and 14. This means there are a lot of school-aged children and their families struggling with the complex issues presented by Lyme disease. I hope that you and your fellow educators can find ways to help this family through this difficult time.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org. On Twitter, she’s @dorothyleland.
Good job, Dorothy – you are in a position to help so many!
You might want to also tell schools that often children are so disabled they can’t do any school work- at home or at school.
Justin Reilly you areally so right!!! Within a 4 month period my son developed ocd so severe he was unable to do almost anything but shower & clean. We were spending every ounce of energy and time caring for him, and worried about his health. We lived daily with the thought “are we taking him to the hospital today” sadly all the scool wanted to know was when he would be back…..I had to pull him out & start a homeschool. Not fair to these kids….he was a straight A student and now because of the time missed (because it has takes 2+ years to get help….he will probably be limited to a gedrs or homeschool grad. Its not fair to these kids would have worked so hard.
******a note to everyone…
I have not had any help from infectious disease…it nerds to be a lyme literate dr or a tick borne dr. ******
It’s been a long road has my entire family has been diagnosed. :/
your article here states lyme can be passed to an unborn child…? What do you base that statement on? I found two different sites that say it is transmitted to humans Via tick bite
http://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Lyme-Disease
And the CDC: Lyme disease is caused by the bacterium Borrelia burgdorferi and is transmitted to humans through the bite of infected blacklegged ticks.
Most cases of Lyme are likely the result of transmission from ticks. But there is lots of evidence showing transmission from infected mother to unborn child. Here are some resources to look at:
https://www.lymedisease.org/wp-content/uploads/2014/08/Image21-Gestational-Lyme-Studies.pdf
https://www.lymedisease.org/wp-content/uploads/2014/08/Image22-Gestational-Lyme-Bibliography.pdf
https://www.lymedisease.org/wp-content/uploads/2014/08/Image23-Corson-Healthy-Moms.pdf
The CDC website states “No life-threatening effects on the fetus have been found in cases where the mother receives appropriate antibiotic treatment for her Lyme disease.” But it is silent about what happens when the mother does NOT receive appropriate treatment. Based on the studies I have read and large number of cases I’m personally aware of where Lyme was transmitted from mother to unborn child, I believe the CDC is remiss in not emphasizing the need to protect the unborn from acquiring Lyme this way. –Dorothy Leland
I am glad that some schools and teachers are aware enough to ask. Thank you for helping those who need to understand.
I hope you personally wrote and sent this letter to the school nurse in addition to posting it here. I was told I had mono at age 18 when l really had Lyme. It took me 30 years to get a proper diagnosis. 20 years after that I am now bedridden and in the late stages of this disease.
I have no respect for conventional docs that shuffle kids off with some bogus disease rather than try for an accurate diagnosis.
Theresa, I did indeed personally write and send that letter to the school nurse. I hope she shares the information with her colleagues. School officials need a lot of education regarding Lyme disease. Dorothy
Theresa, I hope and pray you can still get some help. It is indeed a crime that those young people with Lyme get shuffled off. As well as being a Lyme victim, I know my two youngest have Lyme biting at their heals. My son learned about herbs when diagnosed with mono in high school. I had absolutely no idea what to do to help him. Lyme had not taken me down then, and he started learning about herbs and eating right all on his own. I even made fun of him. What a rotten, rotten mother then. I am so ashamed of myself. My son does pretty well. My younger daughter has PCOS. Related to Lyme, oh yeah!!!
Great answer, Dorothy.
Wow. I wish physicians would listen to me when I tell them exactly the same thing in this blog. My 13 year old son, whom I believe I transmitted Lyme to in utero, had mono last year and since has been experiencing the exact same debilitating symptoms that I endure daily due to neuro Lyme. I honestly believe and stand firmly that it’s transferred I’m utero and triggered later in their lives. I feel guilty, that I am the reason my son suffers…….sorry this is difficult to accept. I also stand firm that mono is the majority trigger. I contracted chicken pox at age 30 from an infected toddler at a restaurant and then mono 3 months later and after that neuro Lyme was detected only because I was exhibiting signs of Alzheimer’s. I’m only 35. My son is only 13. I wish I could take away his pain.
I agree with Justin R who accurately stated that some kids with Lyme are just too ill to even school at home! This information needs to shared with the school administrators loud and clear. When kids are extremely exhausted, in pain, neurologically impacted, etc. schooling may need to be put on hold for a season until the child is improved enough to focus. This is such a tormenting illness and regaining health is the priority.