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

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.

 

Thursday
Sep292016

Take My Kid--No, Really!

Caption: Some days, I feel as though I'm being fed to the sharks.

Ouch. Total honesty here. I need a break from parenthood.

Seriously, I want out. I love my kids. Even like them when they're feeling OK and are acting sweet. I'd love to be given a million dollars with the stipulation that I take them on a shopping spree. But dealing with teenagers can be a dreadful job. And dealing with teens on Lyme is utterly despicable. 

As I write this, my son is quietly going about his own business, yakking up a lung from his recent cold that he can't seem to put aside. My daughter is supposedly doing homework but her bedroom light is dark, so...yeah, there's that. Her dad and I are probably taking away her phone. Again. Until her grades pop back up. 

My husband said, "We must suck at being parents." 

"Excuse me," I said, my mind thinking to all the research I've done, all the doctor appointments I've managed, all the consoling that had taken every tiny bit of energy from my body. "Do you really think I'm a bad parent? Didn't think so."

And no, it's not my husband. He's pretty darned good himself. Except for some of his political views, but that's a discussion we won't even have another day.

The bottom line is: we are tick-bornely challenged. How much of the behavior we sometimes or frequently see is due to hormones? How much is due to tickborne diseases that make their home in all the nooks and crevices in the body? How much is a double combo sub sandwich of Lyme and teenager-itis?

We've really tried to be good parents. We spend time with our kids. Take them places. Have Daddy/daughter dates and all that 1:1 time that they crave. Heck, maybe we don't ignore them enough. Maybe we don't give enough consequences, but that's because you can't have consequences for a kid with PANDAS really, except sometimes, when you know that a consequence will help deter a behavior (in other words, when the behavior is not a symptom.) Believe me, we tried. We had star charts and balloons and prizes plus negative consequences and ways to earn back certain privileges...and all for nothing. 

Maybe I should spank my kids. Slap them right across their cute little butts. Smack those spiteful mouths. Hey, my parents did it to me. But no. I had to have this new-age philosophy that we should not hit our kids if we're trying to teach our kids not to hit others. Be a good role-model and all that. 

I guess they did learn something from our no-hitting rule because they've never truly had a physical fight with each other. Not like my brother and I used to have, with kicking and hair pulling. (To protect his reputation, I will say that I'm older by three years and we don't fight anymore. Not since two months ago. JK.) But gosh darn, when you make kids give up physical fighting, they get mean with their words. Ow.

We have a rule against name-calling. It doesn't always work. Sometimes my husband has even broken the rule. Then I have to get mad at him. And that always ends well.

Last week, one of my daughter's teachers let me know that she thinks my daughter is a great kid, a breath of fresh air. I was high on that perception for maybe 24 hours, until my cherub's air began to reek from the nastiness and anger spewing from that not-so-little mouth.

I don't have wicked kids. In fact, they have their wonderful sides. My daughter actually said to me, "Enjoy this moment when I'm saying 'I love you' because later on...well, you never know about my mood." My son will text me a question and then text back with, "Thank you, dear." Weirdo. But he's a hugger. 

I tried to practice mindfulness as I was driving home with one hungry, hangry child today. When confronted with, "You haven't heard anything I've said," I very calmly answered with, "I heard you say that you want me to take you out for something to eat, that you're very hungry. But we're close to home and going home." In other words, NO! I will NOT give in to your every demand, dammit!

And that's the core...when my child asks for something, and I say yes, I live the golden dream for a little while. I am the BEST MOTHER EVAH. But when I say no, well, I better freaking RUN!  The child will attempt to engage. Beginning with the questions, "Why???????"

I think that the old European custom of apprenticing kids out to your friends for their teen years has a lot of merit. Maybe you only did that if you were a duke or earl or laird...I'm none of those, but please, won't you take my kids for a couple of years and return them to me when they're all sweet and sugary like babies again? Or, barring that, until they find a cure for Lyme? 

Heck, maybe with the Lyme affecting my memory, I won't remember these years anyway. 

Sunday
Aug212016

17 Ways to Piss off a Kid with PANDAS or Bart

image

How difficult is it to rev up a kid who is dealing with PANS/PANDAS or Bartonella rages? Unfortunately, not very. In fact, a much lengthier guide is needed to relate how to relieve a child (or adult) from symptoms that can look like temper tantrums...especially if the person in question is flinging around laundry baskets or punching holes in the wall or slapping themselves in the face.

The following are sure-fire ways of instigating anger. Hey, every day is an opportunity to practice your rage-calming skills. 

1. Take away his computer/phone/iPad. Seems that nearly every kid with PANDAS/PANS or sensory issues has need of a technological device that she uses to distract her. 

2. Remove Netflix or TV. And don't tell them until they try to use it. See above. 

3. Tell the child to make his bed. Or to wash dishes. Or to clean up her room.

4. Tell the child to do homework.

5. Insist the child goes to the supermarket with you.

6. Give the child vile liquid medicine.

7. Tell the child to take a shower or bath.

8. Request that the child picks up dog poop. Or throws out his garbage in a smelly can.

9. Give the child a deadline for any project/chore.

10. Try to teach the child to do his own laundry. Better yet, try to get the child to fold her own laundry and put it away!

11. Give a new antibiotic (i.e. induce a Herxheimer's reaction.)

12. Serve a new food. A green one.

13. Leave a door open when your child needs it to be closed. Always. Or sit in their chair.

14. Enforce gluten-free, dairy-free requirements, sugar-free eating.

15. Give a consequence for bad behavior.

16. Change your mind when the child is expecting something.

17. Lose your temper or argue back.

Note: Please do not interpret this as anything other than a snarky guide to show you how EASY it is to rub a sick child the wrong way. While it is difficult for parents, it is especially challenging for siblings who feel they must walk on eggshells around their sick brother or sister. Plus, healthier siblings would have consequences (see #15) whereas it's difficult to determine when an ill child's rage is a symptom or behavior. 

What triggers do YOUR kids have?

 

Tuesday
Aug162016

Back to School = Stress

Breathe. Breathe in, out. Be grateful for the rich green tones in the leaves, the warm blueness of the sky. Lose yourself in the moment.

And then... back to reality. School is starting in a couple of weeks and already the kids are getting stressed, particularly the one who was homebound for most of last year. He thinks he's going to go back full time and be successful but he can't even handle looking up the summer homework. With me by his side. 

We were supposed to have a CSE meeting to talk about all this. For once, maybe this child would even choose to come to the CSE meeting, especially if he wants his opinion heard (please, please, express yourself!) He seems to want to think that I want him home--whoa--so not! But what I do want is a plan to help him be successful. I want him starting school and I want him STAYING in school, not pulling out come October or November. 

A success plan is a quandary, even to me who knows him so well. I would suggest limiting classes but at this time, he doesn't choose to do that. I would suggest that the school suggests that but everyone apparently is on vacation. The CSE meeting we requested for end of July/start of August never materialized. And said child was pretty ill (again) so our attention was focused on the medical.

As is typical. Our attention is frequently focused on the medical, as opposed to the educational or the other child even, sometimes. We try, oh, we try. In fact, I'm PAYING the other child to do tutoring. I figured that if I had to dish out money for a tutor, we could be spending quite a bit weekly. But if I bought her a Starbucks drink and threw in a little cash, she would respectfully permit the teacher in the family to tutor her. It's Mommy-child time with a dash of reading comprehension and a splash of Greek and Roman roots. 

But the sicker child just keeps getting sicker. He seems to be able to tolerate ONE drop of Samento, but not two. He has finally permitted me to give him liquid medicine if I hide it in (virgin) strawberry daquiris. Thanks goodness for the Vitamix. I make enough for a few days. Quite honestly, it's only really good the first day! 

I love summer. I can get out and exercise all my woes away. I see friends frequently. I can escape THE HOUSE. I adore late summer nights, walking by the river, not having to wear a jacket.

Work isn't so bad. I love teaching and enjoy being creative. My focus on teaching prevents me from thinking of much else, until the students leave the room, so it's an escape. But I'm tired after the day and I have less ME time. I don't exercise enough. 

Then again, I feel like I haven't used my ME time well enough this summer. I barely blogged, never completed the blogs I started, and still, still, still haven't tried to salvage the book I started fifteen years ago. 

As my friend said, I'm dealing with a sick child. It all comes back to that. My child who's bigger than me (well, I think they both are now.) My child who needs my hugs so badly. If there's nothing else that's working yet for him, I know that hugging helps.

School supplies? Teachers and schedules? Waking up earlier? All that can be handled. A kid with Lyme who is setting himself up for failure because he wants to graduate high school in four years but can't handle stress? Oy.