Take Two

There's no better feeling than seeing my son all dressed up in a suit and tie, mingling with his friends of all ethnicities and religions, all of whom are on their way to a peer's bar Mitzvah. And then there's that math test he came home with the other day--the 104--which had me beaming for days. One year ago, two years ago, three years ago, four years ago -- he couldn't do any of this. He has shown such improvement from PANDAS and Lyme. Not that he's without symptoms, I always feel I must add. He's still getting IVIG and he's still on antibiotics and supplements. 

If his growth is an upward curve (after plummeting nearly to suicidal levels,) my daughter's is a slow decline. At first, we attributed her behaviors to current and post-traumatic stress (her brother) and a need for more attention. She was only 6-1/2 when her brother, two years older, became not only sick but suffered an extreme personality change.

When we discovered that she also has Lyme Disease, Bartonella, Babesia (courtesy of me and my childhood playing in CT woods,) we opted to strengthen her immune system and not attack these dormant diseases. But--guess what? They weren't so dormant after all. Now, in her tween years, the symptoms are emerging more and more. She's able to keep it together for school. She stresses over PE because of her air hunger, but she's playing in an AYSO soccer team on the weekends and she participated in a lacrosse camp this past summer. She doesn't like bicycle riding at all. I think that's my fault for letting her do a 14-mile ride and tiring her out. Major bummer. 

I try not to worry about the future. We can point to our son and say, "Look how well he's doing! If you do everything you need to do, you'll feel much better." Even so, I had to take away her iPAD today until she'd succumb to eating something "terrible" that we had in the house (because "we have no good food") so that she could take her antibiotics.

We have requested a 504 from the school district--she's in MY school now--and so far, they're very accommodating about testing her. I'm not used to this--a school district that actually suggests adding another evaluation. I almost feel guilty in some ways. When I took her to my school for (no fee--a privilege accorded to district employees in a district with one of the highest rated high schools in the country,) I believed her to be the well child who needed a change of environment, smaller classes and teachers I trusted. Well, she's getting all that and a whole lot more. I hope. Either way, she has teachers who are caring. But then, so does my son in our home district, this year.

When dusk sets in and bedtime looms, that witching hour of old comes alive once more. Fears of men climbing the house to break in through windows (despite our barky terrier,) fears of arms coming out from under the bed, intrusive thoughts, and lots of other PANS-ish symptoms pop out. She's like a Pandora's box of neuroborrellia (and Bartonella and Babesia) symptoms. It's not much different from when she was a baby. A "sweaty little piglet," we called her, unaware that her night sweats were a symptom of Babesia. Unaware that Babesia even existed. The only way she (and I) could fall asleep at night was with her lying on top of me. Although she was a week late, I always had the feeling she wanted to crawl back inside the womb. At 2 days old, she managed to move her tiny body closer to mine on the bed. She didn't leave our bed (for "good") until she was 4. And it wasn't for lack of trying! I'm very glad I didn't believe in the "crying it out" method because there's no way to know how much of her neediness was due to the Lyme and co. 

When she was 4, she was a confident, outgoing, cheerful little one. She's still a smiley girl. But she is sick.

Yes, I feel sorry and sad for us sometimes. I tell myself I'm stronger than I ever was (although I spent much of the weekend in bed, fatigued, loss of appetite, not able to bicycle or even walk with my friend.) I am stronger within, and I have the support of wonderful friends, some of whom experience the same type of evening and some of whom only know about Lyme through me. 

I'm hoping that we'll have her in good shape by the time she's in 8th grade. That's 2 years. I need a goal and I need to drive forward, toward that goal. Right now, I am slowly introducing the medications so that she doesn't have a bad Herxheimer's reaction. I know so much more than I did when my son initially began treatment. That's a plus. 

The minus is that I now know so much more than most medical practitioners. I have friends who buy the CDC crappy line that Lyme can be treated in 3 weeks and that long-term antibiotics are detrimental. I have family that wants to see all our symptoms as behaviors or characteristics of growing older (me.) I know that some of my executive functioning skills are warped right now, but I'm also self-aware enough to know that it's the Lyme that's the cause. My daughter is not old enough to know what she's really made of. 

Or does she? She does know she's a hard worker. Determined, even stubborn. A rockin' drummer who wants to dye her hair all shades and have a rocker's wardrobe. A little chef's helper (to my husband.) A caring, loving person. 

We'll get through this, yes, we will. And I'll eventually get my bedroom back, and my nights free from lying next to her until she falls asleep. She's my little girl still, sometimes independent and sometimes needy. But she has the support of good doctors and the love of her family to counteract the diseases that are trying to photo-bomb her brain.

Comments

[Mommy Outside]

Goals are good :) Our four year old with PANDAS is doing well, very well actually, since we found help. And I always have a year from now, when she starts school, in the back of my head and how we are going to keep her on the right track and ready for that!

Hugs to you and your family. You are not alone.

[Louise Stanley]

Our daughter was diagnosed with bartonella PANS/PANDAS in May 2011 (end of grade 4).
Time line from ACN Latitudes PANS/PANDAS/Lyme forum here:

DD13 - Born 2001 with light/sound/touch sensitivity. Loss of speech/fine motor ability 2 weeks after 15 month MMR vaccination.
2004 - Dx ADHD, sensory disorder (light, sound, touch), motor delay (with toe-walking), hypotonia, oral apraxia.
2008 - MMR booster and insect bite (bruise-like rash) - motor/vocal tics, emotional lability (including rage), age regressive behaviour, low level OCD, urinary frequency, diminished fine motor ability, insomnia, loss of executive function. Waxed and waned with strep/viral infections.
2010 - Dx ADHD, Tourettes, Aspergers, motor delay, probable PANDAS.
Jan 2011 - shin/forearm pain, cyclic IBS, foot (sole) pain, dizziness, palpitations, chest pain, anxiety/panic attacks, pick-like skull pain, pain and stiffness at base of skull, tingling in extremities, chills and hot flashes, extreme fatigue, nightly fever.
June 2011 - Igenex PCR positive bartonella, Negative ELISA, Negative lyme (IND IgM kDa 41; IND IgG kDa 39, 34. kDa 41++). CD57 18. Positive ANA (speckled type), heterozygous A1298C MTHFR. Multiple Abx, methyl B12, methylfolate, P-5-P, herbal, homeopathic treatment with LLMD.
Jan 2013 - Bartonella IgG titers declined from 160 (Jun 2011) to 80. CD57 16.
April 2013 - Weaned from abx treatment at 80% improvement. Continued with Full Buhner bartonella herbal protocol, Terry Wahls/PerfectHealthDiet gf/cf/sf diet. Minimizing EMF exposure.
Sept 2013 - CD57 45.
Oct 2013 - All symptoms (PANS and pain/fatigue) 95% resolved. No flares with viral or other infections. Herxing remains with changes in herbal protocols.
Nov 2013 - Improvement to 98% with addition of Buhner herbal protozoan treatment.
Dec 2013 - ANA titers negative. PANS symptoms resolved. Regular classroom requiring no accommodations. B+/A student.
Mar 2014 - Continued improvement in cognitive/executive function with increased dosages of cryptolepis/sida/alchornea (CSA) tincture.
Sept 2014 - Continued improvement with the addition of red root and bidens. Resolution of EMF sensitivities with low dose cilantro tincture. 99%

After treatment with multiple combo abx for 2 years for only bartonella, because she had tested negative for both babesia microti and duncani and was asymptomatic for babesia, she weaned from abx treatment at approx. 80% improvement.

Because she was still symptomatic for bartonella, we continued with Buhner's bartonella protocol for 8 months (maintaining 80% improvement) before we added herbs from his babesia protocol. 1 week later her teacher called to ask what we had done. Her cognitive/executive function and attitude had improved noticeably. Within the month her remaining bartonella symptoms had resolved.

She remains asymptomatic, except for some babesia herx symptoms that show up (mostly dizziness) when we increase the herbal dosages.

She is now asymptomatic for her diagnoses of Asperger's, Tourette's, ADHD, PANS/PANDAS, motor delay, bartonella and babesia. Her only residual symptom is a suggestible motor tic - when I ask how her ticcing is each day (because I record all symptoms against protocol changes daily, and have done so for 4 years) she is forced to tic once. Other than that - nothing.

It is entirely possible that your daughter will be healed by grade 8. Mine is. Keep up the good work. I am glad your son is improving; it is good to see them interacting properly with peers.

Louise