mommaonamission said...
Rowingmom - can you give me a link to your story and how you helped K? Is your child better? I'm desperate to read parents experiences and the journey their kids went on (and also how you kept your strength and patience throughout). What did you do for discipline when K was out of control or acting crazy silly (if you experienced any of this). Were you tough on him or did you give him support?
It's really hard for me to tell what is a Herx reaction and what isn't. Nothing really changed this past week in our routine (including medication/supplements), but for some reason W has been off the wall for about a week. Blabbering, making noise, etc. Should I be giving him charcoal, Epsom salt baths, etc. daily, even during good days, or only when he is off?
I mentioned Bartonella to our doc at our last visit, and he added in Zythro (since that was part of what seemed to work so well in the fall) along with the omnicef that he's been on for two months. He was on ceftin and pulses of alinia in December, but that was a dister too.
So yeah, I would love to hear your story. Can you provide a link? Thank you so much!
K has been asymptomatic since Sept of 2014. She has lost her diagnoses of Tourette's, ADHD, Asperger's and SPD. She is functioning without accommodations in a mainstream grade 9 high school classroom and receiving grades of B+/A. She celtic dances (think RiverDance), rides horses (Western), plays the piano, and is active in her church Youth Group
Sorry, I don't have a link. I was too busy trying to figure everything out to spend time blogging. Her timeline is here (my signature from the ACN PANS/PANDAS/Lyme forum):
K - Born 2001 with light/sound/touch sensitivity. Loss of speech/fine motor ability 2 weeks after 15 month MMR vaccination.
2004 - Dx ADHD, SPD (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 extremeties, 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 - Clinical babesia diagnosis. 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. Resolution of EMF sensitivities with low dose cilantro tincture and diatomaceous earth. 99%
I do have 5 years worth of EXCEL charts with daily entries of protocol (both antibiotic and herbal) vs symptoms that I will send you if you would like to look at them.
Although it was hard to keep my cool, and many times I didn't because I was suffering from the same infections (bartonella is really bad for low frustration tolerance/raging), K was made to sit through a lot of time outs because of her issues. They didn't really change her behaviour
(nothing did until we were able to tackle the infections and decrease her brain inflammation), but she understood that her acting out would not be tolerated and would result in consequences.