Merry Month of Lyme

Fatigue. Anger. Sadness. Loss.

Money. Lethargy. Head pain.

Having my eyelids peeled back with tweezers till I am forced to glare at reality. 

Witnessing the worst and best of people.

That's what Lyme Disease means to me.

Lyme means false diagnoses for my family. It means an internist sweetly asking if I want an antidepressant when I complain about being lethargic. It means a pediatrician telling me that my daughter is stressed (hence her air hunger) and insisting that a positive Lyme test is a FALSE positive. It means that when band 41 came out positive on my son's first Lyme test, more than four years ago, it went unacknowledged by two neurologists and a psychiatrist who struggled to figure out why a 9-year old kid would try to kill himself.

It means that PANDAS and Lyme are entwined for my son. It means that Lyme was probably always there, but strep pulled the trigger. It means that there are many fantastic PANDAS doctors who are still relying on LabCorp and Quest tests and are therefore telling patients that they do not have Lyme Disease when in fact they do.

Not everyone has Lyme Disease and co-infections (Bartonella and Babesia are some of the more insidious and evil ones.) But Lyme and co. is not called the Great Imitator for naught. Chronic Fatigue, Fibromyalgia, arthritis, lupus, etc. etc. are many times induced by Lyme Disease. Lyme: the disease that spawns autoimmune disorders. 

Lyme means that the government is not supporting me through legal and medical measures. I happen to be positive for Lyme Disease by CDC standards because I'm healthier than my child; therefore, my body can make the antibodies and fight this bacteria (to some extent.) The CDC ignores people like my son, who has been too sick for too long to make the antibodies to fight Lyme. The IDSA (Infectious Disease Society of America) believes in tests that continue to give false negatives, tests that only examine a few of the tattle-telling bands of Lyme. Just this past year, my government increased its estimate of NEW Lyme patients each year from 30,000 to 300,000. Fifth grade common core curriculum teaches place value. How is it that an estimate is off by this much (per year?) And...to tell you the truth, I don't think I was counted in that 300,000 last year. I don't think my daughter was counted either. Make that 300,002. Maybe the government is not smarter than a fifth grader.

Ummm...wouldn't ya think this is an epidemic? Like, worse than the 100 or so cases of measles that keep making the newspapers?  And...how about those studies that show that Lyme and co-infections can be passed through the placenta to infect the unborn child? How about all those studies--conducted by IDSA researchers--that show that 3 weeks of doxycycline are not enough to kill off the Lyme bacteria? Hello? Anyone home?

I took my daugther to the homeopathic practitioner today. I know that my bright child is struggling with attention and focus. I see it at home. Hourly. We came away with a list of supplements and remedies. And another bill. I like this woman a lot. I don't like the bills that are associated with her and with every other doctor we see. I would love to take my son, my husband and myself to this homeopath, who uses a zyto scan and therefore has access to information that blood tests don't show. I wish the zyto scan was not "so alternative" and would be covered by insurance. Someday. 

I came home, through thick traffic, to help my son with his math homework. He continues to struggle with math. Call it PANDAS. Call it Lyme. Call it Bartonella. I love algebra but my firstborn does not. Lyme brain. I was tired, just wanted to be alone. My husband made dinner. What would I do without him? I took the medicines out--the ones we take during dinner. The ones we take away from food. Love that Byron White A-L. I added one drop Saturday night (to make 10) and woke up extra tired as well as depressed on Sunday. Reverted to 9 drops Sunday night and woke up OK on Monday. As I sit here, propped against pillows, I feel electric zaps in my leg. My entire head aches as if my hair has been in a ponytail all day. I walk around dizzy during the day. But no one knows. And frankly, no one has time to care. 

Treat the Lyme and the autoimmune diseases will be easier to handle. Treat the Lyme and maybe I won't end up with Alzheimer's. My grandmothers lived to be very old. How will Lyme Disease affect me? Will I be able to bicycle when I'm 90? You see, another big problem with Lyme (shhh! It's a big secret!) is that it NEVER goes away. 

But, if we keep our bodies super healthy, we will have the strength to battle the bacteria and keep it under control. Exercise, low or no sugar, healthy foods. Must avoid anything inflammatory. I've gone gluten-free but I swear, I need chocolate! Dark chocolate is bad enough to a milk-chocolate lover but chocolate without sugar is impossible! I have no energy. I can't handle caffeine. I'm not a big drinker. Aside from my Lyme meds, I don't do drugs. Must I not have even a single vice? 

I received a message today--a very kind message--from a representative of an organization that really didn't want much to do with my family when we lost the financial ability to belong. At the time, I was upset but too steeped in my son being hugely ill, too ashamed that although we look OK on paper, we didn't have the funds to "even pay X much." It all came back to me today, through this person's caring, and I cringed. On and off all day, my eyes welled up. I guess I never took time to grieve this loss before. When I think of it, this organization could have done so much to help us. If my child had been diagnosed with cancer, I don't think we would have been treated this way. But depression, PANDAS, Lyme? What a crazy cocktail.

Well, these crazy medicinal cocktails, from IVIGs to supplements to all kinds of doctors and therapists who won't or can't work with insurance have done us in. My husband and I have brought our kids to doctors who could help--as have many other parents in similar positions. These doctors and their remedies cost money. Insurance covers only a fraction of these bills. We've gone through savings and incurred debt. I mean, who wouldn't? These are our children! And the doctors we see are those who risk a lot to save our children. I can't blame them for not being able to work within the system. Heck, the system would've locked up my baby. 

So now we're faced with a major financial setback that has no chance of going away unless we win the lottery (oopsies, we don't play.) We still have our home, but our mortgage payments are often late. Sometimes, we have to wait for the next paycheck before making any new purchases, including grocery runs. We can't afford vacations but we'll do everything we can to ensure that our daughter gets the braces she needs on her teeth and that both our kids see specialists who can treat them. We have no college savings but we'll find ways of helping our children go to decent schools when the time comes. I had a big birthday that came and went without any sort of celebration. My inlaws made sure that my son had a real bar Mitzvah. I'm stressing about camps for summer and applying--and getting approved--for scholarships. This is what Lyme and PANDAS have done to my family. 

And then there's me. I teach and I'm tired. I come home and I'm tired. I'm always tired. Blah blah blah. That's how my kids will always remember me. But I can bicycle 25 or 50 miles.

We're heading in to Memorial Day weekend, and for the first time in a long time, I've made arrangements for Saturday, Sunday and Monday. We're spending time with good friends. I'm getting OUT. For too long, we've been secluded, avoided having guests (well, who wants to see the broken ceiling in our kitchen!?) Having guests stresses me out even though my husband does the bulk of the cooking. I used to plan parties all the time! I love people! So, I'm starting slowly with people who don't judge me. I will bake gluten-free, dairy free, full of sugar and chocolate brownies for the party we are attending at another friend's house. I will live and enjoy my time with people who have stood by us, made us laugh, given us hugs.

For although this has been a most surprising and difficult journey, (and I've met some difficult people--but I won't list them here,) I have somehow surrounded myself with the finest people around. We have friends who never left us. We have new friends who have learned about Lyme through us and we have friends and supportive acquaintances in the PANDAS and Lyme communities. We have found treasures...from the teacher who tutored my son through his bar Mitzvah to the educational advocate who helped us deal with the school system to the doctors who have given us hope. 

Lyme Disease and co. and PANDAS are horrible and I don't wish them on anyone...well, I take that back. I know I'm a fifth grade teacher and I try to find the best in everyone, but I just can't be that nice. I do wish Lyme on a couple of people. There. I actually wrote it.

However, these diseases have also led me to know a lot more about the human body, neurology, immunology, the will of people and natural medicines. They have also brought me to know many more than a handful of the best people on earth. 

You know who you are. XXOO

Danbury: Lyme Conference

I attended this conference at the last moment, to work a PANDAS table (or half of one) with a fellow PANDAS/Lyme mom/advocate. We shared the other half of the table with a very engaging chiropractor/Functional Medicine Practitioner who offers a treatment to manage neurotransmitters. I am very interested in learning more aobut this.

I sat in for Dr. Stephen Phillips' presentation. Sadly, I left just as Dr. Robert Bransfield was about to speak. I admire him greatly; we brought my son to him. Dr. Bransfield has written many important articles about the neuropsychiatric symptoms of Lyme Disease. He even attended a PANDAS Legislative meeting in Hartford, Ct. But it was 8:30 PM and I was already tired (and had to get up at 6 this morning to go teach.) 

Here are some highlights from Dr. Phillips' talk. Any mistakes are mine. All links are mine. Dr. Phillips is quite knowledgeable and presented a good deal of information. He seemed to me to be a doctor who treats aggressively, someone who looks for clinical evidence, and a medical practitioner who is not afraid to risk angering the staid medical community that still abides by CDC guidelines in his quest to heal people.

*It's uncommon to just get infected with borrelia. There are almost always co-infections involved, even if they don't show up on blood tests.

*Erlichea--you can get rid of it.

*Anaplasma--is also more easily treated.

*Bartonella has over 25 strains but we only test for 2! Bartonella is also more drug-resistant than other diseases/infections. Babesia is also more challenging to treat.

*Dr. Phillips has treated over 100 patients who are also doctors since 1996, but only 3 or 4 of the will treat Lyme Disease. Many doctors don't want to deal with Lyme Disease.

*There are many studies, even conducted by IDSA (Infectious Disease Society of America) researchers that prove that Lyme and co. do not leave the body after a few weeks of antibiotics. Electro microscopy and PCR hae found evidence of Lyme. There are several NIH sponsored studies that demonstrate that antibiotics, given for a short time, do not cure the person of Lyme. Yet IDSA doctors still treat with just a few weeks of antibiotics.

*It is "an egregious oversight in the IDSA guidelines," said Dr. Phillips.

*"You don't believe in Lyme? It's not a religion," he said. "You can't ignore the facts."

*Lyme isn't always in the blood. It can be found in cysts, now referred to as "round bodies." Plaquenil kills these round bodies. 

*In one case history, Rifampin, given for 2 months, reduced psoriasis. Why don't rheumatologists use antibiotics more often if so many studies show they work for arthritis (and psoriasis?)

*Fluconazole gets right into the brain.

*There is a high correlation between MS and Lyme and Fibromyalgia and Lyme. Lyme can be indistinguishable from MS, and is a likely cause of MS. There have been many studies conducted that prove this. So, as Dr. Phillips questioned, why isn't THIS on the cover of the NY Times?

Note: it was wonderful to see several of the doctors who are treating my family there. Dr. Charles Ray Jones attended, most probably to give his support to the presenters. He received a standing ovation.

Mother's Day 2014: No Coasting For Us

It's Mother's Day and I salute all the moms of kids who have any type of disease or disorder. You moms rock! I just received an email from a mother who needs to find a doctor for a child who has disintegrated in the last few months. The school system is making threats because of her child's absences. The doctors tell her that she coddles her child too much. (Oh, we heard that one also when my son was first sick.) But here's the beautiful thing--this mom will not give up! She is talking to people, on the internet, believing in her child, searching for help. And because of this, her child has a great chance. 

What about those children who do not have strong, problem-solving parents? We need to be there for their kids as well. Once our children are in a better place and we have a moment to think, or even while the recovery process is going on, we must promote PANDAS and Lyme awareness so that those doctors can figure it out instead of saying that we hug our kids too much. There will be no coasting for us.

I wanted to write about my bicycle ride today and somehow I wrote about this mom whose email has been spinning in my mind. I'm so grateful she wrote to me. I'm so grateful that my website could offer her some help. But I did want to tell you about my bike ride.

Last summer, my CATEYE stopped working so I couldn't tell how fast I was bicycling. In some ways, it didn't matter because between the constant stress and my own Lyme Disease, it was enough that I could get out and pedal 20 miles a couple of times a week with a friend. The previous year, I was strong and planning to do a 100 miles ride before my next birthday (didn't happen--I did a 52 mile ride and was ok with that. But the 100 mile goal still looms.) 

Today, I got my new CATEYE from my husband. Today, my son and I stayed home to spend some time with my side of the family while my husband and daughter went to his sister's house. My son, now 13, and I had also planned a long bicycle ride together. 

We both started out feeling sluggish but my son quickly perked up. About 7 miles in, I realized that I'd forgotten that I had gels with me. Instant energy! Don't ask me what they're made of...if it's toxins, they're helping me zip up my bicycling. And they are gluten-free!

This is the most beautiful day we've had yet this year in the Northeast, or at least in my section of NY. My son asked me how many miles I wanted to do. I was thinking 20. Two years ago, it was me asking him. He's now a stronger, faster bike rider than I am. Yes, he has bicycled AND unicycled throughout the winter months and that has helped. And I will get stronger this summer. But so will he. I will never again catch up with him and that's is the way life is supposed to be. My boy is growing and I am so proud of him.

I have cadence on my new CATEYE. The thing that bothers me about the cadence monitor is that when I'm coasting, it goes to zero. Well, of course, one would think! But I just worked really hard to get up a hill (that I could've flown up 2 years ago) and now I'm on the downside and I have a right to rest it out while enjoying the breeze in my face and the 20 mph ride. 

My husband would tell me to keep pedaling on the down hills. And I do, often, because I like speed, something my son finds amusing given my "older" age. It's perhaps a failing of mine, this need for speed, this need for the wind in my face. I used to love how the wind blew through my hair. But now I wear a helmet. 

I think my son has the need for speed also. He no longer "tells on me" for riding too fast down a hill. Today, on the way back, a boy older than my son passed us on a downhill. My husband would say, "Anyone can pass on a downhill; it's passing on an uphill that counts." 

My son took after him like the little energetic monster he is and passed him, then maintained his pace. I picked up my speed but stayed behind. Hey, it was a downhill. Nothing to be proved there. At the bottom of the hill, when the path began to rise, the other boy stopped bicycling altogether. On the uphill, I shifted and pulled in front of my son with the customary, "On your left!" I was nearly smirking, ready to remind him that it's the uphill that counts.

Halfway up the hill, I slowed down. I just could not keep the faster pace--yet! And guess who passed me? My boy!

There are so many metaphors for life to be gleaned from bicycling on a brilliant, pale-leafed spring-sunny day. My son's strength is not just in his muscles.

My son is recovering--dare I say that? He wants us to do a 100 mile ride at the end of the summer. I don't know that I can do that, or that we should attempt so many miles at this time. Doctors and acupuncturists have told us that over-exercising can affect the immune system. And I'm having some back issues which may or may not be attributed to Lyme; something I need to figure out. But I'm game for another 52 mile ride along the Long Island coastline. So, in planning to do the 52 mile ride, I upped today's ride to 25 miles. 

I am so lucky to have an incredible kid. Throughout this entire journey, there have been plenty of times when he did not want to take medicine (holy Mepron!) But he did, albeit with threats, rewards, coaxing. He would let me know if he felt a rage coming on and ask to be held so he did no damage. He persevered through suicidal thoughts and OCD urges. The grit that he has shown in getting through this disease is amazing. 

We are not done. Perhaps we are not climbing such a steep uphill anymore, but we are not coasting either. I saw him ticcing this morning at breakfast. On paper, he is immune deficient. He cannot yet handle a lot of stress. But he is adding more hours of schooling. He doesn't feel as though he's processing slowly anymore. He is excited about his future and trying to figure out what he wants to do with his life someday. I believe that if and when he has a decline, we will be able to get him back to this place. We now have a standard, a cadence and we know it can be done.

After jumping in the shower to wash away the puddles we biked through, I took him out for the best homemade ice cream. (Yes! He's allowed dairy again!) I bought him the largest cup. 

A day with my son, a day bicycling. What more could I ask for on Mother's Day? (Well, a day bicycling with my daughter and husband too, but that will come.) This is a Mother's Day for the memories. 

Wishing everyone hope, healthy, recovery. It can happen.

All About Oils

I have heard that if the scent of an essential oil does not appeal to you, your body needs it; the toxins in your body are trying to make you keep that oil away. And if a scent of an essential oil greatly appeals to you, your mind and soul needs it.

Well, in that case, I really need Peace and Calming, Stress Away and Joy, because, I'm sorry to say that those scents stink to me! Please...don't psychoanalyze me. Suffice it to say that I'm the mom of a recovering PANDAS and Lyme child, the mom of another child who has Lyme, the wife of a husband with an autoimmune disease and a Lymie myself. AGHHHHH! Run for the hills--I mean fields!

Well, the fields of Young Living Essential Oils are rolling with color, vibrancy and medical cures. I attended a party/seminar the other day in order to learn how these oils can help this not-so-peaceful family of mine. I took notes. And I'll share whatever I learned with you. Any mistakes are mine. Please check with your medical practitioner before using Essential Oils. 

Rebecca McCracken is a friend and a certified nurse midwife/RN who uses YL Therapeutic Essential Oils in her practice. Through her, I learned that Young Living Essential Oils are being used in many top hospitals around the country. I then spoke with a couple of friends in the medical field who have been using these oils for a long time; they now seem to be making a resurgence (at least in the PANDAS and Lyme communities.) Once I go the go-ahead from my son's doctor, I was ready to learn.

Becky kindly put together a list of oils that would be good for treating PANDAS. Note: there is also a PANDAS group on FB that was started by another woman who gently sells these oils (you have to ask HER to sell them to you--she won't push.) This is also a good resource for therapeutic oil-users. Becky was joined by Bianca and Jodi of Sundala Center for Wellness. 

We briefly discussed the use of cannabis oil and hemp-seed oil. I am by far not an expert on either of these. It seems that cannabis oil is not yet legal and hemp-seed oil, which is very expensive, is working for some people. But these are not Young Living products, as far as I know.

So, here's what I've learned thus far:

Bianca shared that since she began using YL oils, she hasn't had to take an antibiotic. It's been 8 years. She and Jodi shared that oils can be used on pets, for cleaning products and a lot more. Becky talked about getting our homes toxin-free.

The YL oils are super-compounded. They cross the blood-brain barrier when inhaled. Many of these oils have been around since biblical times. YL uses no chemicals when growing the herbs that are used to make the oils. YL actually believes their herbs are a standard above organic. YL has its own farms to ensure purity.

I haven't checked it out, but you can find articles on PubMed about essential oils.

With a high quality oil product, normal cells will not be affected with use, but cells such as cancer cells can be killed. Oils can be diffused (you can purchase a diffuser,) rubbed onto the bottoms of feet, bellies, wrists, etc., dropped into water and swallowed, put into capsules and swallowed or inserted rectally. Oils taken internally can improve liver function. You can also place oils on a warm wash cloth, then lay the wash cloth over the liver and/or kidneys to detox. 

Tarragon mixed with coconut oil, inserted rectally, can help with parasites. Some oils can be inserted vaginally to help with Candida. 

It was mentioned that there are more immune cells in the intestines than anywhere else in the body; this is an advantage to rectal insertions (not something the group seemed to embrace.)

You can put oils in your bath; drop them in right before you get in (not while you're running the water.)

Frankincense used to be "more valuable than gold" in ancient times. It works on depression, anxiety, PTSD, cancer/tumors. Boswellic acid is one of the main components in frankincense. The oil is distilled from the resin. We learned that Oman is a center for Boswellia sacra and that within a 100 mile radius of the plants in Oman, the people who chew the resin have excellent teeth and gums with a very low incidence of oral cancer. You can take a little frankincense in a carrier oil and massage it into teeth and gums.

Forty-three lemon rinds are used to create one bottle of Lemon EO. Yes, you can drink it. Becky added a drop or two to a pitcher of cold water and it was delicious. This is a great detox tool. For Lyme, we're often told to drink lemon squeezed into water, but then told to use a straw so that we don't ruin the enamel on our teeth. Using an EO is much more gentle, I was told. So, you can drink it. You can clean with it; the lemon EO kills MRSA. Put some in a spray bottle with water and use it to clean. 

One drop of peppermint EO equals 26 cups of peppermint tea! Peppermint enhances digestion, alertness, helps with headaches and migraines. It is a vaso-dilater/constrictor and will help with sinus relief. It can help curb appetite, food addictions and cravings.  You can put it on your temples but avoid the eyes! If you get it in your eyes, don't wash with water; you need to use an oil (like olive oil) to cut it. Peppermint improves acuity. It can also help with air-hunger (a symptom of babesia.) Put 1 drop in 500 ml of water. Check to see if you can use this if you're doing homeopathy also.

Joy works as an anti-depressant. It's a blend of different oils and can be used for mood swings and blood pressure. It's a good calming oil for kids who are struggling with going to school. You can put it on your wrist.

Lavender is anti-inflammatory, anti-anxiety and anti-allergy/asthma. You can use it on your dog--place a drop where the tail meets the spine. If you put it on your hands and your dog needs it, s/he will lick it (which is ok.) Not all oils are ok for pets, however. Lavender can increase concentration and mental acuity. If I could, I'd diffuse this in my classrooms during a test!

Purification is good for bug bites and anything itchy.

Lavender and Purication together work well for bug bites. In fact, you can add Purification to paints to void the toxicity of paints. People have done this before painting rooms in a house.

Thieves' Oil is a blend of clove, lemon, cinnamon bark, eucalyptus and rosemary that works well on mold and bacteria. Here's the story behind this EO: In the time of the bubonic plague, thieves were robbing the bodies of the dead. When the thieves were caught, they were offered a lesser sentence if they would only explain how it was that they could rob the bodies and not get sick. Turns out they were covering themselves in a blend of different oils. In fact, it is thought that Nostradamus also used this oil to help his patients. There is a hand sanitizer made from this oil, created by Young Living. (I want it.) It can be used for teething (use in carrier oil on gums.) Even more mainstream dentists are using clove oil now. This is the oil for mold, yeast, jock itch, athlete's foot, etc. Purification and Lemon can also work for yeast/fungal infections.

Panaway is made from wintergreen and is supposed to chase the pain away. It can stop bleeding and is anti-inflammatory. For even more relief, you can use Deep Relief.

V6 oil is a good carrier oil but may contain wheat (for those of us who are wheat-free.)

Peace and Calming can be massaged into a child's chest or feet before bedtime. It's also good for animals. It can be used topically or diffused. It is made from Tansy Blue, Patchouli, tangerine, orange and Ylang Ylang.) It promotes relaxation and dampens tension.

Copaiba is from Brazil. It's anti-inflammatory and used for gastro-intestinal issues. 

You can layer oils. Put peppermint on first, copaiba on last. 

Valor helps you to hold a chiropractic adjustment. It is good for TMJ and can increase courage and self-esteem (don't ask me how!) I tried it on my son's feet this morning before the first day of his state core curriculum test (along with lavender, which is supposed to help with getting good grades.)

For allergies, try lavender, lemon and peppermint. Use 3 drops of each in a capsule; take internally 3 times a day or in water (but it's pretty intense.)

There are many blood vessels in the bottom of your feet, or in the crook of your elbow or behing your knee. You can apply oils to any of these places (close your limb after until the oils are absorbed.)

Nitro is for brain fog. I have to check into that one.

Ocatea balances blood sugar levels. It's a cinnamon derivative. Use prior to eating. You can drop it in water. Use grapefruit EO, Lemon, Tangerine and a drop of ocatea for weight loss.

Oregano has antiviral, antibacterial, anti-parasitic, anti-fungal and anti-inflammatory properties. It's an immune system stimulant.

This was a Young Living Therapeutic Essential Oils information session. There are other oils out there, but you have to do your research. Some oils don't work for some people, some oils need to build up before you see an effect. I don't know how to tell if there's a placebo effect yet. I tend to be a doubter but I want to believe there's something about these oils. We'll see. Guess I better start using that Stress Away.

I'd love to hear your stories! For more information, please contact Rebecca McCracken.

Can it last?

It's the final countdown. (Europe)

Could someone pinch me please? (Annie)

Totally mixing my musical genres. Totally hyped up for my son's upcoming bar Mitzvah where indeed we will mix musical genres. Is this really, truly happening? Will something cause it to go haywire? Will he pull it off? Will I be able to dance on my heels?

 

Tick, tock, tick, tock (no, not Kesha's song now.) I cannot wait for this week to pass. So much to endure...my son, 13, returned to school last week. He continues to work with tutors at home and has returned for Health class. So that he can take the bus home at the appointed time, the school changed his schedule to give him PE/Music on alternating days.

My son, the athlete, LOVES Physical Education. He LOVES seeing all his friends and making new friends (friends he would've invited to the bar Mitzvah had he been back to school before this time.) In fact, we were scheduled to see his doctor this week. A few weeks ago, when I made the appointment, his body was hurting so much that he was having difficulty running, he said. His hands were always cold and tender. 

Well, this kid does not want to leave school to see his PANDAS/Lyme doctor. I postponed the appointment.

He needs IVIG but I scheduled it for June 30, right after school ends. Of course, if he's not able to sustain his attendance at school, I'll try to move that date up. But right after health comes his education and if he himself wants to be in school. Wow--not gonna interfere with that.

I read recently that when a sick kid starts to feel better, he or she might miss the extra attention he received from a parent and subconsciously not want to get better and lose that attention. So I've been trying to shower him with attention as much as I can. When he's not running out of the house to hang out with friends. When he's not silently slipping away into his bedroom to fall asleep without asking me to rub his back. Hey, I miss that crazy interaction also in a weird way. It's great to not have a needy child but he's plunging into normal teenage behaviors. It's fast.

One more stressor this week before the big day...the dreaded Core Curriculum Math tests, all 270 plus overtime minutes of them. I've told my kids that these exams are good practice for future tests...SATs, medical boards, LSATs...you know where I'm going.

If I weren't a teacher and if I weren't a parent of a child who has missed so much school due to illness, I might be an opt-outer. I don't believe in testing kids to this extreme. I don't believe in evaluating their teachers (or me!) based on the student's experiences with these tests. But given that my daughter has the privilege to come to my school district and that my son has already opted out of so many other experiences, they will both sit for these math travesties. The biggest problem with the tests at this point is that the schedule at the middle school is adjusted and he's going to miss the two classes he now attends. He's quite upset about that. 

My boy likes school! I'm grinning.

I'm also praying for him to remain healthy through this week. He has antibacterial wipes to use on his desk/table at school and I just learned that he's not using them. Just too cool for school-cleaning. I attended an essential oils seminar (and I'll be writing that up as I promised) and would love to cover him in Thieve's Oil, but...no. Then, he would have a scent about him. 

We PANDAS parents are germaphobes with reason. I was never like this a few years ago. I grew up not knowing about lice and ticks and autoimmune diseases. My mother told me not to share hairbrushes because I could catch dandruff from someone and I believed her (not sure if that's true or not.) Now we keep each toothbrush in the house in a different location in the bathroom (and out of sight) and every person has his/her own toothpaste, sans fluoride, with natural ingredients. 

My first baby is 13. He's a mini-man. His voice is lower, he is nearly as tall as me, his foot is larger than mine, he's tech-smart and socially savvy (for a 13 year old.) He's also a royal pain-in-the-butt when he needs to clean his room or complete his bar Mitzvah speech. He tics, yes. He has symptoms still. He's immune deficient. But he's so much better and has been for a few months. Will it last? For how long will it last? Can I breathe? Sing? Rest and rejoice? How much life can we cram in while he's doing well?

I don't mind so much if he's never 100%. If he can maintain a happiness, an ability to learn, a loving personality and health, he has a life. Two years ago I didn't know if this child of mine would make it to 13. Now he's getting bar Mitzvahed. 

Dressed up, somewhere to to
We'll put on a show! (Evita) 

And ten, nine, eight....