I want to wear blue wings and soar

above the screaming

tantrums of today

I will take you with me

(hold you)

as we gaze down

upon whispery earth

at tiny beings

scuffling about

checking their clocks

and bank accounts

Ah,

the life of a bird

who does not love so much

that it hurts

 

 --LWK

 

 

 

Blog Index

 

You are my 'son' shine 

my little 'son' shine;

you make me happy

when skies are grey

You'll never know dear,

how much I love you

please don't take

my 'son' shine away

 

I wish I was fine

It’s like my brain

is doing a freakin’ crime....

 

From a rap by Coby, age 11

Sunday
Oct012017

Answers to "How Is Your Child?" #Lyme #PANS #PANDAS

You slide into the supermarket, push the cart through as you search for organic vegetables (or not, because you haven’t money left for organic), when an acquaintance stops you and asks how everything is. You smile, skate by the question by saying fine, but they persist and ask, how is your child?

You go to a family BBQ and someone asks, in the midst of company, about your child. How do you respond when your child is not well?

PANSLife surveyed a bunch of parents of kids with PANS AND Lyme and came up with the following answers. How many of these resonate with you? How many of you are able to be truthful? To not shield yourself and your family from the world? And to venture receiving either compassion…or criticism?

Sometimes, families are the worst culprits when it comes to belittling parents’ attempts of solving the problem of PANDAS. Or PANS or Lyme. Sometimes, acquaintances and colleagues would rather not know. Yet occasionally, our sharing can lead to another child being correctly diagnosed and treated before the infections cause irreparable damage.

Here are your words:

 “He’s had a rough year fighting…”

 “They don’t ask.”

 “She’s struggling right now. Keep us in your prayers.”

 “He is struggling, better than he was a few years ago, but has no life outside of the house. Thank you for asking since everyone seems to have forgotten about him.”

“We do not talk with distant family. I have posted articles about PANS online for general reference. My teenager is triggered by me oversharing. We talk about it with close friends. Otherwise, we just make small talk.”

“Most don’t ask. When they do, it’s such a vague question and I don’t know how to answer it. I don’t think they are prepared for the reality.”

“I cannot go into details with most unless I know they have a background knowledge to understand. You can’t just say he hit a teacher, then smashed his head into a wall…it’s unfathomable to most. And many people would judge you and your child harshly.”

“When she was spiraling in PANDAS in the past, everyone went silent. No one asked about her or our family. I still don’t think some family members every acknowledged her diagnosis.”

“My mother-in-law is an MD. She told us PANDAS was not real.”

(PANSLIFE note: PANDAS/PANS is recognized by the National Institute of Mental Health, by the American Pediatric Association and has been written about extensively in the Journal of Child and Adolescent Psychopharmacology.) 

“It’s a long story.”

“I used to share more, but people don’t understand; how could they? I can’t believe how hard it is, and I live it every day. Too much information can bring unwanted attention from do-gooders who report your family to children’s protective services or advise us what we are doing wrong and how we should get help. As if we haven’t exhausted every resource we can find.”

“We have a reunion coming up and my family didn’t go last year. This year, I don’t want to go either because no one gets it!!! My husband will stay home with my child. I will get questions like where she is, isn’t she don’t better? I try to explain what’s going on but I just get confused looks. My sisters just ask how she is; I just say better and they accept that and walk away. The whole situation is sad. I have no idea what to say to my aunts this year. Sometimes I wish no one asked, then I get upset when no one asked!? Vicious cycle!!!!”

“I say ‘fine’.”

“’I can share some literature with you that explains his medical issues if you are up to reading it, but if not, it’s too complicated.’ Sad thing is no one except one jewel of a family member has even showed interest in reading or understanding anything.”

 "I call it Autoimmune Encephalitis now because PANDAS sounds too cutesy. AE gets more respect."

“We have our good days and our bad days.”

“Distant family doesn’t ask, close family doesn’t understand, so they get a general “OK” response. Only few understand and care to really hear the true answer.”

“In the past, my sister was honest in communicating her thoughts about my lack of parenting skills. However, she gets it now and is one of my greatest long distance supporters. She calls just about every day and lets me tell her what is really going on. I am so thankful for her.”

“We are still working on his health and learning about his immune system. He is not where we would like him to be, but we are continuing to move forward.”

“I say up and down. We’re hanging in there.”

“I tell them he’s struggling, but we’ll get through it. I’m really honest about everything.”

“I’m honest but don’t do a lot of details.”

 "Not everyone believes in chronic Lyme. Not everyone believes that chronic Lyme or Bartonella can cause this much destruction in a small person. I've gotten pretty good at reading facial expressions of disbelief and I've learned when to stop talking."

“Not well at the moment. He is struggling. We are hanging on with hope but thanks for asking.” Then—move to another topic. I don’t over-share. I’ve learned not to after all this time.”

“I say, ‘up and down, as always.”

“She’s doing ok.”

“We say it ebbs and flows and that we just keep going….”

“I answer honestly, depending on how she is at the time.”

“I say fine. But no one really wants to know, unfortunately. In fact, I think they specifically don’t ask about him for that very reason. If I do open up, I often get advice that just makes me angry. But that’s just me.”

“Depends on how they ask. If it’s just small talk, I say ‘fine’ and redirect the conversation. If they want more, they will press on for it. They usually just follow up with ‘Is she still…’ and that’s the cue to go into more detail.”

“One day at a time. I’ve also just recently decided that if someone tries to give me their ‘advice’, I’m going to whip out my phone and read excerpts from this [closed support] group and then ask, ‘What would you do?’”

“People asked how school went this year. My response was, ‘Well, it’s the first year he didn’t get suspended, so better.’”

“My answer depends on the person. If it’s someone that I know cares, I’ll spill the beans. If it's a family member that cares but gets too involved, I halfway spill. If it’s someone making small talk, I say, ‘He’s hanging in there.’”

“I was having a conversation with a friend the other day and said, ‘It’s been a rough road recently.’ At the end of the call, he said, ‘Post an update on Facebook.’ He doesn’t even realize that I left Facebook. I am not posting updates anymore! If you care and want to know, you can call! I don’t have time to look at all the happy posts.”

“It’s complicated but overall, things are going OK.”

“I have always been very honest and factual. I try to educate as to what we are dealing with at the moment. Awareness goes a long way. If they don’t want to know, they won’t ask or will stop asking.”

“I also answer honestly, depending upon how she is at the time they ask. My family makes suggestions but it doesn’t anger me. It comes from love and wanting to help. And they want to understand. I am blessed.”

“I like to think of it as where he was on the road to recovery in terms of percentage. Like 50% better, then 65% and so on. I think that is meaningful to people, so they can understand where your child is in the healing process, and shows there is progress. I also rated each day 0-4 and recorded that so I could see looking back how severe his symptoms were and look for any pattern. 4 was for severe symptoms, and 0 was none, but of course he never got a rating of 0 while healing. I remember towards the end, he was getting many 1's. If someone was interested enough I shared this rating system with them. I think speaking of "symptoms" helps distinguish what is the illness and what is your child.”

“Terrible. Thanks for asking.”

“Great question.”

“He’s coming along. Hoping to see the day that I can say, ‘He’s great!’”

“She goes up and down and she’s down right now but we’re hoping that changes soon.”

"He's being so brave! This is such a challenge for him. We celebrated _____ this week but he really had a tough time with ___"

“I've stopped being truthful. They don't understand and don't truly want to know. I instead say "she struggles with some health issues, but we'll get there" and then I change the subject to something I know they want to talk about - their own kids, themselves, or anything other than my own family.”

“I usually said "this is a good week" or "this is a rough week" and follow up with a sentence that includes the word PANDAS. I find that people are really interested. Ironically, it's actually our immediate family who seems not to get it or be interested in how/why/what we are doing. So it's nice to teach someone about it who seems interested.”

“Better, but he still has a long way to go.”

“Most people really just want to hear a happy ending. There is little understanding for “chronic” or relapsing.”

 

PANS/PANDAS takes its toll on the entire family: parents, siblings, extended family member who choose to care. Sometimes when we try to share, all we hear are crickets. Occasionally, a confidante will actually take the time to listen. And rarely, someone will even admire the persistence of parents who refuse to give up on their beloved children. It sure beats criticism, either direct or implied, or a move to distance oneself from the stricken family.

Facebook has its place in the lives of the struggling. Closed, private support groups offer a refuge for parents fighting daily for the lives of their children. It is often here, with strangers, some of whom become best friends either over the internet or in real-life as well, that parents feel the freedom to confide the most horrific side of PANS. It is here that parents can receive the support and unconditional love so desperately needed through this ordeal.

 

 

 

Monday
Jun262017

A better GPS to managing your child's disease

There I was, barreling down the highway in my car, sweatshirt hood up over my head, covering much of the left side of my face so that I could barely see out of my left eye, traveling away from my destination. I drove in the right lane, searching for an exit that wouldn't come, speeding along just to try to meet the flow of traffic, yet being passed all the same.

I needed to get off the highway. I was heading in the wrong direction. To make it worse, there was a bridge coming up, leading to another state altogether. My chest tightened in panic; I had to turn around somehow. I pulled into another lane in what appeared to be an exit, but it fooled me and just brought me back onto the highway again.

Some man came running down the middle of the busy road, dark clothes, thin, racing down the line that separated the lanes. He was aiming for my car door. But because of the hood obscuring my vision, I didn't see him until the last moment, when I sped past. At that point, I heard police sirens and noticed the open back doors to a police transport van in the middle lane, to my left. I drove past it, frightened because he was clearly an escaped prisoner. Had I been able to see him better, I might have noticed the gun in his hand aiming at me, demanding that I stop for him, and I might have been terrified into slowing down. 

For all of five seconds, the feeling came over me that G-d watched out for me, despite the fact that I no longer believed in G-d. 

I saw the icy blueness of the river looming in the distance, the heavy metal scaffolds of the bridge, and knew then that there was no way to get off this road before I traveled even further from my home.

I made myself wake up.

Only to realize that I'm still spinning down this highway of life, that I'm not where I'm supposed to be. Only to realize that I cannot escape the furious pace of life with a child who's ill, whom I do not have the wherewithal to save single-handedly.

There are no exits in my life. There are no alternatives. I must follow this path as it leads further away from anything I ever imagined, must follow this path that leads me into vertigo from spinning out of control. 

I cannot make sense of a kid suffering. My child says that he lost much of his childhood; my husband and I also grieve. The money that we used for medical bills would have paid for trips to other countries, Broadway shows, activities, lessons and dinners out. The hours, days, years we incurred traveling from doctor appointment to doctor appointment could have been delightfully whittled away with bicycle rides, ice cream parties, family trips to museums and movies.

I cannot make sense of a disease that has not got a cure. A disease that is disregarded by doctors, disrespected by the very medical community that misdiagnosed my child, misunderstood by the general population. 

We have been deprived of some of the best years with our children as children. We know all too well what we have lost--the joyous laughter of two little kids playing together, pretending to be mommy and daddy to the monkey dolls we bought for them at the zoo, the kids zipping by us on their tricycles, then learning to ride bicycles without training wheels, the squeals and giggles as we shoot whipped cream from the can into little open mouths.

How do we get this back? How do we save our children--and by that, I mean all of our children, our collective children who suffer from misunderstood diseases, who are left on the sidelines--or no lines at all while others participate, achieve, advance through life? How do we ensure that they even make it to adulthood? How do we help them to have decent adult lives?

There are no exits for my child, for my family. I do not know why. I do not see a greater meaning to anyone suffering.  

We need to turn our lives around. Somehow. For that, I need a better GPS.

Sunday
May212017

Lyme Connection Conference 2017: Notes

 

I had the opportunity to attend (and run a Lyme Disease Challenge table) at the 2017 Lyme Connection Health Fair and Conference (Beyond Lyme: Redefining the Future of Tickborne Diseases) on May 18, 2017. Dr. Eva Sapi was presented with the Courage in Research Award. Clinical Neurophysiologist Dr. Elena Frid and Osteopathic Physician Dr. Thomas Moorcroft were the featured speakers. Following are my notes from the conference. Any mistakes are mine.

One theme that emerged from all three speeches was the fact that research about Lyme, etc. is being censored. Why? Why are studies being skewed and misinterpreted, or not published at all? 

 

Dr. Eva Sapi (University of New Haven)

In the 1980s, they discovered that Borrelia was not just a spirochete but made biofims.

2010 study showed that antibiotics, which are the gold standard, don't work on biofilms.

2012 study: Borrelia Burgdorferi persisted after 90 days treatment in monkeys

Borrelia: most recognized forms are 

a. spirochete

b. round bodies (cysts, granules)

c. biofilm

Biofilms are a collection of microorganisms, like plaque on teeth, like slime in the shower. It has been established that over 90% of bacteria live in biofilm. Biofilms are extra resistant to antibiotics.

Kidney stones (and other ailments) are examples of biofilm-related diseases

The biofilm is like a city, protected by walls. They have channels to bring in food and to bring out the waste. There is a protective layer. 

All borrelia makes biofilms.

At one point in Dr. Sapi's work, her chair received phone calls complaining that her work was not "real science" and asking the chair to shut down her work. She was permitted to continue (fortunately!)

Could other pathogens exist in these tissues? They found chlamydia sitting in the middle of borrelia. Might these two have a symbiotic relationship?

 

Dr. Elena Frid

NeuroLyme is Infection-Induced Autoimmune Encephalitis

1- infection

2- causes inflammation

3-resulting in autoimmune phenomenon (i.e. ANA (antinuclear antibodies)

Autonomic Nervous System-- responsible for things we don't think about--can be affected (POTS, Blood pressure, sweating, heart problems, digestive system)

Peripheral Nervous System (neuropathy, autoimmune)

This is microscopic; if you do an MRI, you may very well not see any changes.

Glial cells are as important as nerves and are affected by neuroLyme

Einstein's brain had more glial cells than average; could it be a sign of intelligence to have more?

In autoimmune conditions, the glial cells are disrupted

The infection is driving the autoimmune phenomenon

You must treat both--the infection and the autoimmune system--at the same time

Lyme is the Great Imitator; every person diagnosed with ADD, ADHD should be checked for Lyme

February 2017 paper in a Neuropsych Magazine claimed that 50% of people hospitalized for depression have an infection

FIBROMYALGIA DOESN'T EXIST; IT'S A SYMPTOM, NOT A DIAGNOSIS

A bull's eye rash is a gift from G-d because most patients don't get it

Have never seen a patient with just Borrelia; it's not just Lyme

April edition of Neurology (magazine): IVIG article. 320 patients were given IVIG over 18 months in a study of Alzheimers. Study deemed that IVIG does not work for Alzheimer's. HOWEVER, because IVIG is so expensive, the researchers gave only between 0.2 - 0.4 gm/kg instead of the standard/recommended 1.5 - 2.0 gm/kg. Citing this study, insurance companies are not going to pay for IVIG treatments.

IVIG for Lyme: improvement seen in 7-9 treatments; need 2 years of IVIG

Prevention: 

Tick Tock, Buzz Away, Insect Repellant clothing

Deet works when wet, not dry

Permethrin: since 2009, mandated by US military for all personnel, even those who are pregnant

Wear all the time, especially if you're doing high risk activity...like going into your yard!

(Someone mentioned how people are more cautious about using sunscreen than tick repellant.)

 

Dr. Tom Moorcroft

Lyme is old; 5,300 years old at least. And Borrelia has been around for at least 15 million years

Borrelia has 132 functioning genes, 21 plasmids (highest known in bacteria) and there are over 100 strains

Probably over 1 million cases of Lyme a year, if fully tested and reported (USA)

Yale study showed that Lyme (Borrelia) and Babesia co-occur more often than expected

In the Netherlands, 70% of the ticks have Bartonella

Spirochetes are found in breastmilk; unknown whether it passes

Maternal fetal transmission does exist

Sexual transmission: jury is still out; not scientifically proven but many reported cases

If you've had Babesia, you can't give blood

If the Red Cross knows this persists, why can't the rest of the world? 

Transmission: Cook 2014: minimum attachment time is not known

LITERATURE IS CENSURED! There are studies that aren't being published

70% of people get Lyme in in a friend's backyard

5-10 year olds are in the greatest risk category, boys even more so than girls

Diagnosis is clinical

Could literally list symptoms of Lyme for 3 hours without repeating ay

Lyme in children: about 50% present with GI complaint

other symptoms in children: acute behavioral diagnosis, regression

American Psychiatric Association recognizes Lyme can cause psych symptoms

 

Detox: 

Happens when you sleep

many Lyme patients don't sleep well

Sleep on incline (Samina bed)

incline your bed with the head up; supports brain detox

melatonin helps heal and detox

meditation can hep

nighttime light exposure (i.e. from smartphones) is not good for you

Blue Bockers -use when watching TV

grounding pad for bed; turn off Wifi in house at night

 

Chronic Group A strep infections in nose; The blood brain barrier breaks down

Simply Saline and Xlear nasal spray

Butiyko Breathing Method opens up nose (Patrick McKeoun)

Randomized, double-blind, placebo trials take the individual out of the study

 

Thursday
Feb092017

Lyme & Adolescence: It's All in the Attitude

Rolling my eyes, trying to figure out these kids. Reminiscing about the sweet babies they once were (and forgetting about the sleepless nights.) How many of the attitudes and arguments I experience with them are a result of Lyme and how much are adolescence? Sometimes I wish I had more children, younger children, so I could still enjoy the wholesome energy and innocence of pre-pubescence. But if I had more kids, they'd probably also have Lyme and also be jaded by the older ones. So maybe I should just be grateful for what I have. My two teenagers and a dog. 

From 1-12, here are the teenage conditions over which I ponder:

1. When is their attitude a flare and when is it puberty? So much angst over being asked to wash a dish. To pick up hair from the sink. To complete a report on time. Are most teenagers like this? Finding the need to push back on "normal" parental requests? Is this adolescent rebellion? 

2. When they don't clean their rooms, when they leave dirty dishes under their beds, when they hoard towels and food in their bedrooms, is this "normal"? I've taken pictures of my daughter's room and now my son's is even worse. OMG--his room! And then he has the nerve to complain about not having clean laundry. Do you know how many times I've found clean, rolled-up socks in the dirty laundry basket? Yes, I still do my son's laundry. It's too much for him to handle. But he MUST carry his laundry to the basement and he's been refusing to do that until the last minute. "Mom! I need these pants! In ten minutes!"

3. Sudden burst of energy when it comes to hanging around with friends does not quite last when it comes to helping around the house. Ok. I get this. Adrenaline keeps me going, too. I need so to be with my friends, to escape our house of stress. When I return home, I'm tired. As a parent and an adult, there are things I must do at home. But my house is not as clean as it once was and I let a ton go. I'm just happy if my kids do have energy to play with friends. My son is working hard at school and often spends the whole weekend resting.

4. As much as we try to have sit-down dinners, everyone wants to eat on their own. Even me. Because I'm often too tired to eat a meal after working all day. But my kids don't want to be with everyone else. And my son wants to avoid all conflicts which increase his stress. Kid + Kid = conflict 70% of the time. That's teen math for you.

5. They both still love and need our dog. They would sleep with the dog nightly if they could but we got tired of the arguments and trade-off agreements. Plus, who knows if the dog is harboring a tick? 

6. They both have moments when they're super sweet. Friends tell us we have great kids. They certainly know how to hold their own with adults. My son can be very cuddly which means he will always be this way, forever and ever. My daughter is extremely thoughtful and giving. When she's not taking my clothes or make-up. 

7. Neither wants to disappoint us. This is a good thing. I think it's this that resulted in my son apologizing to my daughter this morning and changing the course of what could have been a difficult day.

8. Somehow, there's some homework that does not get done. And very little energy to do it once they get home. My daughter goes straight to her bedroom and lies down for a little while. A little while turns into a long while. She's so tired. Then she thinks she did all her work.

9. They are totally different from other kids who have Lyme, yet they share many characteristics. Needing time for recuperation is important for both my kids. My son has had joint pain, my daughter has had air hunger. There are so many symptoms and between both kids, they cover many of them yet they're both so different from one another in the way in which they handle them.

10. Suddenly, both of my kids like epsom salt baths. It's very interesting, as I'm not much of a bath person myself although I've probably given them a thousand baths. Now they're doing it all themselves! Reminder: must buy stock in epsom salts. Someday. They also share a love for music, bands and jamming with each other (son on electric bass, daughter on drums) when they're actually getting along.

11. Normal kids might experiment with alcohol and drugs. My son told me he wants to have a beer once in a while at a party (not that he's going to parties, although he seems to be invited frequently.) He's open with me about it. But he's on medicine. And he's not even yet 16. This is such a dilemma. I was such a G-rated kid but my kids are not aiming for that rating. 

12. Both kids used to participate in team sports. They were active athletes. That's left the building because of Lyme. When my son suddenly felt well a month ago and bicycled about 70 miles in 2 days with a friend, he had a bit of a crash and had to stay home from school. 

So, I'm taking my kids to a rock concert in a month for their birthdays. One of them is worrying about getting along. The other is worrying that the seats are too high. I'm worrying that I won't have any energy left after a class trip that happens to be planned for the same day (which will affect my own Lyme.) But we're all excited--and that's normal teenage stuff! Plus they're excited to go with ME! Their mom! (Who is paying.) So having teenagers is kinda cool, because they're like mini-adults and so easy to have conversations with. But the chronic illness thing definitely throws a dent in the normalcy of everyday life, and in our hopes and expectations. 

Today was a snow day. Several times, I practiced mindfulness and took a moment to breathe and picture myself in the middle of a lake on a warm autumn day, surrounded by golden leaved trees. I think healthy teens can do that to a parent also.

Wednesday
Feb082017

Lyme & Learning: A Lecture

Last night, I attended a talk with autoiummune neurologist Elena Frid, MD entitled: Lyme and Learning: How Infections Can Impact Your Child's Brain. The even was sponsored by Links Academy. Members of Global Lyme Alliance and Lyme Connection Task Force also spoke.

Having spent the last half decade (or more) learning about Lyme from the point of view of a parent and educator, I was hoping to learn something new about educating our children. I am happy that I attended as I solidified some knowledge, had questions answered and am able to perceive symptoms in new ways. I see the "bouquet" of symptoms listed in one of my children. However, there are not many educational strategies that I took away other than to understand that we are dealing with medically ill children who will struggle to learn.

Talks like this further accent the need for national funds to be diverted into Lyme research so that we can develop a cure.  

Please note that any errors in reporting are mine. I have moved around ideas as they were discussed so as to fit neatly into categories.

 

NOMENCLATURE:

  • Lyme is misnamed; it is a bacterial infection and more than “just Lyme.” It results in immune system issues.
  • Lyme should be renamed to: a multi-systemic infectious immune issue. Perhaps “Infections-induced autoimmune phenomenon.” The infection is driving the autoimmune process which is affecting the brain and the nerves.

 

MEDICAL:

  • If a doctor ever says a Lyme test is negative, run as fast as you can. A negative test does not mean that Lyme is not an active infection. In fact, very ill people stop making antibodies to fight the Lyme.
  • $24 million spent on Lyme annually (Public money); new cases per year: 400,000 now
  • $3 billion annually spent on HIV; new cases per year: 50,000 at peak
  • Lyme is in every state and in 80 countries
  • People suffering from Lyme will probably respond poorly to vaccines. The CDC states that vaccines should not be administered to patients when their immune systems are down. Recommends deferring vaccinations until immune system is strong.
  • 90% of our DNA is made of bugs. When a person gets exposed to an infection that involves much of the DNA, they can develop autoimmune illness.
  • When a child comes into the office with lots of diagnoses, issues with school, friends, it’s a systemic problem.
  • If you go to the primary care doctor, and you give them all the symptoms, they’ll send you t a psychiatrist. But when you go to your Lyme Literate doctor, do tell that person everything.
  • With negative test results, doctors should send a letter to patients stating that a negative Lyme test does not mean that the patient does not have Lyme.
  • Medicine is a Lost Art. Nowadays, doctors have to follow protocols and if a disease doesn’t fit into a nice, neat box, it gets labeled psychiatric.
  • The neurological system is greatly affected by Lyme, whether it be neurodegenerative or neuropsychiatric. Fatigue and/or pain is common.
  • However, a LLMD has to rule out other possible medical conditions before diagnosing Lyme.
  • Treatment consists of 1-3 years and should extend at least 2 months beyond the point of no symptoms. Treat all infections at once (or you won’t be treating effectively.) If in 3-6 months, you don’t see improvement, you need to further explore treatment options. Dr. Frid uses Specialty Labs, Igenex, Galaxy, Advanced Labs, Moleculera (Cunningham panel which can help diagnosis PANS/PANDAS.)
  • Bartonella is intracellular and is in the gut.
  • Babesia is a parasite, which lives inside red blood cells.
  • When the immune system is down, the patient isn’t developing a normal immune response.
  • Moleculera is not available in NY. It is unconstitutional to prevent patients from seeking the best care. Doctors are limited but patients may go to other states for these different labs that aren’t sanctioned in their own state. The Cunningham panel checks for autoimmune encephalitis which is a much better diagnosis and description for this disease. When you go to a new doctor, an emergency room or an educational meeting, do not lead with the term Lyme. Instead, use “autoimmune encephalitis.”
  • A headache is a neurological symptom. Intractable headaches imply larger issues.
  • A “bouquet” of symptoms indicates there could be autoimmune encephalitis:
    • Dizziness, insomnia, visual disturbance, brain fog, memory issues, regressive behaviors, OCD, depression, anxiety, fatigue
  • SSRIs? Not suggested. When you give serotonin, you excite neurotransmitters which can make the child worse. Anti-seizure medicines are recommended (Ativan, Xanax) for symptomatic treatment (note that these can be addictive.) Gaba supplements are recommended as GABA can calm the brain.
  • Sleep issues? These will get better as your treat infections. Ativan is a good short-term drug but will actually cause insomnia long-term. Melatonin and Benadryl are both fine to use.
  • There are patients with permanent damage. MRIs can show neurodegenerative changes.
  • Will you see encephalitis on an MRI? Not always. Other tools to use: SPECT and PET scans.
  • Years ago, doctors took biopsies that showed microscopic, subtle changes (this is no longer done.)
  • If a child is severely ill with neurologic Lyme, there are no hospitals at this time that can treat for Lyme; most children will be placed in psychiatric hospitals.

 

EDUCATIONAL:

  • Schoolwork: the brain is inflamed. Trying to compete with people who are at the top of their game is challenging.
  • Reading is tough on many Lyme patients. It’s a mechanical problem. There can be tracking issues; the eyes jump and cannot access the content. There can also be convergence insufficiency where the eyes drift out, not able to focus.
  • A small child might say, “Mommy, I’m tired, carry me.” Then, 30 minutes later, have energy or get excited about a visitor. This just shows the waxing and waning of energy/symptoms. A person with Lyme can be fine one day and not the next.
  • If a child is usually at 40-50% but can sometimes perform at 80 or 90%, there is a good chance of reversibility in their process.
  • Education: what to do when child doesn’t feel well in school? If a child isn’t doing well that day, do a ½ day of school rather than a full day. Don’t work full time for 2 days and then have to recuperate for 5. Work part time, do as much as you can, and recuperate daily.
  • “Their body is at war and in the meantime, you’re trying to teach them calculus.”
  • Glasses with prisms can aid a child who is having eye-tracking and convergence sufficiency issues.
  • If a child is having a bad day? Give them something that comes easily, so that they will have some success so that we (educators) aren’t kicking a child when he’s down.
  • Color-coding, reducing sensory issues can help.
  • How do we best service a child who has these impairments? Neurocognitive assessments can help. Kids like this tend to focus on minutiae and don’t see the big picture; and that can be how they perceive the whole world. The brain is inflamed and overactive.