rowingmom and LMC mom (all mamas with sick little ones)

How old were your kids when they got sick? Is it just Lyme and company or PANS/PANDAS?

My 3 year old is having issues. Behavioral and physical. He's almost manic. Maybe it's just who he is... but something tells me it's just not normal. He will be watching a movie laughing like crazy he and in the same breath start screaming at me about not being able to get the toy at the store he wanted 2 weeks ago.. he gets mad about me not closing the door right and throws himself on the floor bashing his own head until his face is bleeding. He isn't happy and smiling and playing as much Lately. He's always in a bad mood. We all have off days but sometimes it seems a bit drastic.

Physically he gets low fevers at least twice a week. He says his legs and his head hurt often and I don't know if he says it because he hears me saying it to not. But sometimes I know he has a headache because he says his forehead hurts and will go lay in bed with his hands covering his eyes for quite a while. He has serious intestinal issues. He always has had a hard time with going number 2. He gets Welty rashes from time to time especially in the bath or when he gets warm. I know some people do this but every time he falls asleep he is drenched in sweat. If we take him grocery shopping or out to dinner we know in a matter of days he will be sick.

I've been giving him Lyme nosodes vitamin c and a multivitamin on a daily basis. He has had probiotics everyday for about 2 years. He doesn't eat dairy soy or gluten. Sugar comes in the foirmrm coconut sugar or honey on special days.

His dad is.... not supportive of my concern. He cannot admit something might be wrong with our son. He makes any and every excuse imaginable for any ailment. He is very resistant to the idea he might actually be sick.

When I was pregnant I knew something was wrong and he believed the doctors that called me depressed. He believed them instead of me when they said everything was fine, and it wasn't fine. We both almost died when he was Born. There were blood clots in the placenta. Something stressed him out while in utero because he passed his meconium and then aspirated it. I went septic. It was weeks in the NICU until we finally got to come home. But there was still something wrong....

I'll stop there. But ya. His behavior is what makes me so worried at the moment. Maybe just because it's been so hard to deal with lately. Ugh... I'm too sick to have a sick kid. I've been unable to admit myself there might be something wrong with him. He has had strep. And he was inside of me.

Our daughter was born with light, sound and touch sensitivities and had febrile seizures throughout her first year. Everything went downhill with her 15 month MMR vaccination. We were dealing with PANS/PANDAS as well. Here is her complete timeline:

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 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%

Our LLMD thinks her infections were congenital; the reason why she responded poorly to her vaccinations.

I knew something was wrong, but our PCP said there was no problem - her regressions were coincidental. I believed him for years until she started having pain. When the PCP said that her pain was not real, that she didn't want to go to school, I knew he was full of it. She loves school. That was the day I walked out and never went back.

I post on the ACN PANS/PANDAS forum as rowingmom as well.

I sought treatment for my son just before his third birthday. He was complaining of joint pain and had started sleeping later and later each morning. Occasionally he felt just generally sick. And he was constipated nearly every day. My LLMD started treating him for babesia, and he improved quite a bit and then plateaued. We thought it was was time to stop that treatment, but a less than a week later, he became sick again. So we resumed the first treatment (Beyond Balance drops) and added Argentyn silver. He has had some new herx symptoms from the sliver, so I think it must be attacking a different coinfection.

IHL:

Did your son have a immunization shot before you noticed his change in behaviour and change in his health? My 5 yr old got bit in Fall 2014 but had no symptoms until... she got the MMR--IPV--and something else. The pediatrician gave all this (7 different vaccines!) at one "well visit". Shortly after, she started to present symptoms of Lyme and Bartonella.  She got a rash after the vaccines, but since she tested negative, he wouldn't give her any abx.

Dr. Klinghardt advices against vaccination in children that are in his care while on treatment for Lyme and co.

Unfortunately, my children's pediatrician was clueless.  We are seeking another pediatrician through recommandations of our doctor friends, but the damage is done. He vaccinated worse than if she were an animal--not that animals are not to care for, but she is just a 5 yr old kid!  Most drs. don't know and don't care! If they would have cared, they would read up on research outside the mainstream and be very careful not to hurt an innocent child :( We live in a cruel, cruel, world where money takes presidence over the well being of humans, including children.

Post Edited (Simela1) : 3/20/2015 10:54:47 AM (GMT-6)

IHL:

I don't think you are a bad mom. I would have done the same thing if I would have known better, but I did not. My 5 yr old is fully vaccinated for her age now, until they are going to decide to push some more vaccines down our throats. I hope you are your little one will be able to enjoy the sun pain free, soon. Summer always made my symptoms milder. Maybe what you are giving him is no longer enough and you have to add something?

You are in a very difficult position for sure. When I was sick, my kids were well. And now that 3 of them are sick, I am well.

Hugs, hang in there, you are a stronger than you think for dealing with it for so long! Stay positive!