PANS life - PANS Life Journey

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.