rowingmom

http://www.theblaze.com/stories/2013/11/25/hospital-holding-teen-against-parents-will-accused-of-having-a-history/

Nice blog. Great info on behaviour and the immune system.

Hold on. Keep going.

Chewing gum is the only thing that now triggers DD to do her mouth-stretching tic, other than straight suggestion. This happens with both xylitol and sugar-sweetened gums. Her ticcing is still suggestible, but I don't even see it in the evenings anymore.

Wonderful news! Thanks for sharing the above information. Sorry these are from vet med articles: https://ahdc.vet.cornell.edu/clinpath/modules/hemogram/NRBC.HTM Nucleated red blood cells can be seen in peripheral blood (called a normoblastosis or erythroblastosis) under the following situations: Regenerative anemia: In this case, the nRBCs will be accompanied by polychromasia or a reticulocytosis. Bone marrow injury, e.g. endotoxemia, lead poisoning (plumbism) Bone marrow neoplasia, e.g. primary myelodysplasia, acute myeloid leukemia Extramedullary hematopoiesis Altered splenic function, e.g. splenectomy, splenic hemangiosarcoma I thought this was interesting too: nRBCs are counted (regardless of technique, i.e. manual or automated) as white blood cells (WBC). For this reason, the obtained "WBC" count (from an analyzer or a hemocytometer) is actually a nucleated count which includes WBC and nRBC. The obtained nucleated count must be corrected for the number of nRBC in the circulation. So nRBC could actually be skewing a high WBC result. http://www.dcavm.org/10may.html There are three major causes of anemia: 1) Loss of red blood cells 2) Destruction of red blood cells and 3) Lack of production. Anemia can also be categorized as regenerative or non-regenerative. A regenerative response is defined as production of new red blood cells that is appropriate given the degree of anemia. Regeneration can be identified on a complete blood count and differential as a high MCV (new RBCs are larger), polychromasia, anisocytosis, reticulocytes, and nRBCs. Destruction of red blood cells can occur for a number of reasons. Destruction may be secondary to blood borne parasitic diseases such as Babesia canis or Mycoplasma hemofelis or infections such as FeLV. Just my thoughts that this could apply to humans as well. Did she consider that babesia infection might be another cause for nRBC production? I'm just thinking out loud here because I am considering babesia/protozoan infection as another piece of our puzzle. Another thing to learn about.

Wonderful, wonderful news for both of you Ophelia and trintiybella! At long last!!

For some reason, the only time DD tics now is when she chews gum. Found this about lipoic acid/ALA: Lipoic acid increases glutathione production and enhances the effect of mercury in human cell lines.http://www.ncbi.nlm.nih.gov/pubmed/12049840 Thiols are known to influence the metabolism of glutathione. In a previous study (Toxicology 156 (2001) 93) dithiothreitol (DTT) did not show any effect on intra- or extracellular glutathione concentrations in HeLa cell cultures but increased the effects of mercury ions on glutathione concentrations, whereas monothiols such as N-acetylcysteine (NAC) or glutathione did not. Not sure if there would be any relationship with toxin production and buildup.

DD had a very low reaction on the WB for lyme, but did have positive bartonella titers on the Igenex PCR bart test. Bartonella is one of the common coinfections found along with lyme. Others include babesia, ehrlichia, RMSF and mycoplasma. DD's PANS reactions, which included Tourette's-like motor/vocal ticcing, some OCD and loss of math ability and spatial skills, were caused by bartonella (see my signature for more comprehensive list). Her neurological PANS symptoms showed up 2 years before the bartonella pain symptoms started. She also had low vit D. Lymph counts were also low, but not out of range for normal. Glad to hear you will be seeing a specialist.

Glad you have gotten to a point where you can take some time for yourself! I think we all function better if we can bring back some normalicy. I'm finding that this year I am enjoying planning for the holidays; the baking I'm going to do, the decorations I will put up, etc. Last year I was simply reacting and doing what had to be done, but this year is definately more fun. It's good to be out of the trenches, if only for a while.

DD's multiple diagnosis from the ped psych helped us a lot. HF Aspergers/ADHD helped with social and sensory/attention accommodations, motor delay dx helped with OT/PT accommodations, especially for physed. The school knew which accommodations were specific for each diagnosis. I didn't have to ask for anything, just reviewed it with them. DD always had waxing/waning, especially during abx treatment, and although DD's IEP doesn't stipulate that this may happen, the school just uses accomodations accordingly.

A quick search of google suggests that babesia microti (in golden gerbels, anyways) can result in the production of micronucleated erythrocytes. http://www.ncbi.nlm.nih.gov/pubmed/2811934 Here's hoping (???) it's babesia too.

Can you switch the zytro back to the morning again and see if the pain follows? That doesn't sound like a coincidence to me. DD also had stomach pain, but I couldn't correlate it with anything. We tried elimination diets, GF/CF/SF, low oxalate, low histamine, everything. Nothing helped until we started bart abx. It went away within 2 days and has never returned.

I agree with peglem. I only found out about PANDAS because our daughter's symptoms responded so well to strep treatment and reemerged after abx withdrawl. Our ped psych suggested PANDAS, but couldn't treat properly with long term abx and IVIG because we live in Ontario. We eventually found the culprit to be a Bartonella hensalae infection. Antibiotic treatment took 2 years.

Thanks JuliaFaith and SFMom for keeping us up to date with the alternative therapies.

Wow. Mother and children. Autoimmune reactions are becoming so common and it's all happening so quickly. There has to be something other than genetics involved, as suggested in the article.

Thank you dut and MomWithOCDSon. We only used melatonin at bedtime so didn't see a real resolution of daytime ticcing with it. There were a few times when a daytime trial of melatonin would have been informative.

And the antibiotic that finally gives some resolution is a clue as well. If strep abx aren't working after some time, look for different infection(s) that may be causing the PANS/PANDAS reaction. DD tested positive for bartonella, but treatment for cysts/protozoa is what gave her lasting improvement. That along with MTHFR support. Medicine hasn't gotten to the point yet where all infections can be properly diagnosed. Doctors are only now figuring out that gut bacteria are a very important piece of the immune system. Medicine isn't as advanced as we would like to think it is. The key is to find resolution not the exact cause, which could be any combination of genetics, gut health, immune status, toxic load (pesticides, heavy metals, EMFs) and infection.

Don't feel badly about things you may have missed. We missed lots, and just assummed DD had Tourette's, aspergers and a sensitive bladder; was just generally a quirky child. I didn't twig until the pain/fever/chills/headaches showed up. I missed many boats, but really - if infection is involved and not delt with, there would probably have been a relapse after IVIG. DD has gone to plenty of CBT, but in the midst of a flare was unable to transfer what she learned into action of any sort. It's not too late to start researching methylation etc. My whole family pretty much thinks I'm nuts, especially when I mention anything to do with lyme, but you know what - DD is 98% better than she was so I don't care. Sometimes it's fun to be the nutty one .

Our LLMD started DD on methyl B's at the beginning of treatment and didn't tell me they were for. After I figured that out I realized they had been prescribed at too high a dosage, and we have been using lower dosages since then. Make sure the bowels keep moving - we use psyllium husk a couple of hours away from abx. And if you have no CBS difficulties, epsom salts are a good way to boost magnesium and sulfate, both of which are needed for the methylation cycles. http://gotmag.org/mg-deficiency-affects-mthfr-really/

Could you link to the article please? I didn't think PANDAS was considered a spectrum disorder, but the symptoms especially when severe, can be autism-like. Our daughter was diagnosed with Aspergers, mainly because of her social regression and inability to discern social cues. This has resolved with treatment. Brain inflammation can result in many symptoms that mimic AS.

Kids with PANS caused by lyme or bartonella (both gram negative infections) herx. Gram negative bacterial endotoxin release can be caused either by abx treatment or immune response. You may be killing bacteria you don't realize are involved.

With hot flashes, leg and joint pain, you really need to test for the lyme coinfections. Large muscle pain, weakness can be babesia, while bone (and marrow) pain is usually bartonella. I would ask your local lyme group or ILADS (seem to be hard to contact) where the more local LLMDs are. There may be some you are unaware of. If you think you have found a good one, make an appointment and keep it, just try to find someone else to start the ball rolling in the interum. I don't think Dr T is on board with coinfections, and won't test properly for them. It certainly wouldn't hurt to rule out other things in the meantime, but if any neurologist/psychologist/or other -gist tells you they can't find anything wrong so the symptoms must be psychosomatic, don't believe it. Your son has physical symptoms of infection. Sorry about what you are going through.

Is it the melatonin or the sleep resulting from melatonin use that are causing the improvements?

Before treatment DD12's executive function was nonexistant. And I couldn't attribute this simply to age, because her peers were functioning at a much higher level. She was diagnosed with ADHD at 3yo, before PANS symptoms started, but I think she has been dealing with her infections for a long time, probably since birth, and that either reinfection or the MMR booster sent her over the PANS edge. Before and during treatment (started age 10) I had to dress her, brush her teeth, comb her hair, pack her backpack; essentially every task that was required to get her out the door in the morning. Or I could remind her 5 times to do something and it would remain undone. Only if I worked along with her was she able to accomplish anything; homework, unfinished school work (her teacher allowed her to bring it home), making her bed, having a bath, practicing piano, even eating. EVERYTHING. She would bring her lunch home uneaten because she forgot to eat during lunch break. Her ability to concentrate was essentially near zero. Her IEP stipulated that she be removed from class during tests (because the environment was too distracting) and that someone needed to be with her to constantly redirect back to her work. For in-class work she had ear-plugs because her sensitivity to sound was actually painful, and she had to work behind a screen so that the movements of the other kids would not distract her. I had to go to the school twice a week to organize her books/papers/desk because she was so disorganized, and to be updated by the teachers on what she was supposed to be learning so I could teach her at home - one on one. It was horrible and made me somewhat crazy, but I did it. We didn't use psychoactives. The change since she has come out the other side of treatment has been nothing short of AMAZING. Her executive function is now the best in our family. She does most everything without being prompted. Homework, piano, dressing, bedmaking, toothbrushing, bringing in laundry, making salad and setting the table for dinner. She is able to work through most distractions; radio playing, people talking, with no comment. She still has her accomodations for class work/testing but the teacher is not using them. She is able to grasp concepts in the classroom that previously I would have had to explain to her at home. I found that during herxing her concentration/executive function would decline even further, but about 1.5 years into treatment things started to turn around. DD12's problems were so atypical that her school peers were eventually not able to accept her, even though function had improved to essentially normal. We have put her in a new school this year and she is doing wonderfully.

"Because the CYP pathway is essential for normal functioning of various systems in our bodies, any small change in its expression can lead to disruptions. For example, humans exposed to glyphosate have decreased levels of the amino acid tryptophan, which is necessary for active signaling of the neurotransmitter serotonin. Suppressed serotonin levels have been associated with weight gain, depression and Alzheimer’s disease." http://www.nationofchange.org/study-links-monsanto-s-roundup-autism-parkinson-s-and-alzheimer-s-1367764115