Mayzoo

For us, it was rather neutral. I did not see negatives or positives really after a few months so we just stopped it.

Just wanted to write an update about the Covid vaccine: We did get our kiddo (DD 19) the first Pfizer Covid shot on 10-14-2021. Very few PANDAS related issues so far. I took 4 days off to monitor her like a hawk, and I am glad I did since on the second day her heart rate and her blood pressure went up more than I am comfortable with. Pre vaccine her normal is 95/50 ish blood pressure and 60-70 heart rate. By mid day (about 24 hours post vaccine), her heart rate was 98-110 and her blood pressure was ~ 124/82 and both still rising from what I could tell. I started her back on clonidine for 4 days and all went back to normal within a few hours, and then I just keep checking her every few hours. All her numbers are back to normal (even after stopping clonidine) with no real PANDAS related issues yet (possible slight increase in separation anxiety, but not sure if that is related or not). We went with the Pfizer since that is a lower dose than the Moderna and thus less likely for the side effects as a result. Kiddo is also very slight in build (~80lbs). I plan to wait 35 to 42 days for the second shot to let her system rest.

Kiddo was on acyclovir or famvir for years. Her titers did not improve and her symptoms did not improve enough to actually point to the antivirals as a positive. Her Rubella did go down with amantadine (169 to 14), but her coxsackie, and epstein-barr did not improve that I could tell. Her epstein barr was over 600 when we started and over 600 when we stopped, so if it went down it was not discernable on that test. It is possible her EBV titers were say 1200 in the beginning and 700 in the end, but that would not register on the test as both are over 600. Her symptoms have always been up and down and the only thing we have found that has been a discernable help is the antibiotics. If we remove those, she goes into a near catatonic (must literally, physically move her from place to place, must feed her liquids by syringe, becomes incontinent) state with constant screaming all day. Sorry, wish I could offer a magic wand or more hope for us all.

I am debating about getting the vaccine for my daughter, but still on the fence. Sadly, anything you do to reduce the inflammation, (ibuprofen, steroids, turmeric, etc...)will reduce the effectiveness of the vaccine as the inflammation is a normal part of the vaccine working. But even some reduced effectiveness is better than I none I suppose. Hence, why I am waffling--we are not even at base line right now, and my kiddos immunologist will not weigh in on his experiences thus far, so I am fearful of the effects the vaccine will have. They do not recommend Ibuprofen with this vaccine, and you are to avoid steroids all together for at least 2 months prior to normal vaccines (if I recall the time frame correctly).

We have been seeing Dr. Rao since 2013. He is now backing out of treating PANDAS with antibiotics. We just tried to ween our kiddo off antibiotics and ended up in a flare that is similar to catatonia except with frequent screams. In the recent past we tried Dr Gonino and he stated prior to the appointment he would refill her antibiotics, but after the appointment refused to refill them. Anyone have any suggestions for semi-local (DFW and outlying areas) that will refill antibiotics?

Here a few: ASO titers https://www.urmc.rochester.edu/encyclopedia/content.aspx?contenttypeid=167&contentid=strep_aso_titer_blood Cunnigham panel moleculeralabs.com/cunningham-panel-pandas-pans-testing/ CRP for inflammation markers: https://medlineplus.gov/lab-tests/c-reactive-protein-crp-test/ And diagnostic critera: https://www.moleculeralabs.com/pandas-diagnostic-criteria/

My kiddos last vaccine was when she was 18 mo old, and she was conservatively vaccinated even then. We only did the vaccines that I was given as child in the 70s. She still has PANDAS and autism. She is also PID (immune deficient), so that may have played a factor in how her body processed those early vaccines.

My DD would need to go under general anesthesia due to a variety issues, which includes her PANDAS. Thankfully, we have not had to do this yet.

Aperomics is 750.00 + 75.00 shipping per test. Some insurances are covering it, some are not. Ours is not. The one you linked looks like it does only viruses. Once I get results from the aperomics, I will post something on here about it thoroughness.

Has anyone tried the lab test named Aperiomics yet? We are going to have the blood and nasal/throat swab done on August 14th. https://aperiomics.com/ Standardized laboratory testing fails, up to 75% of the time, to identify pathogens that cause infection.. Aperiomics identifies all known pathogens in a single test through next-generation sequencing of DNA/RNA from blood, swab, urine, fecal, tissue or other samples. Deep next-generation sequencing (NGS) creates a complete genetic fingerprint of all microorganisms, allowing us to test for EVERYTHING at once instead of only a few things at a time.

Since MRSA can be airborne, it seems reasonable your son could be affected by your daughter's infection. https://www.staph-infection-resources.com/prevention/airborne/

Kiddo (DD15) has had her ups and downs in the last year. We are currently working on healing the gut and trying to be stable off all abx. She is using essential oils instead. Currently we are using a citrus blend, thyme, and oregano. We will be starting a paleo style diet soon. Kiddo is doing pretty well on the whole, but is very tired still naps 1-2 hours almost every day. Her varicella titres started going up again, and her EBV is still above 600 despite 1.5 yrs of acyclovir. We are stopping the acyclovir and are trying oregano and thyme EO instead. Kiddo was just approved today for SCIG (low dose I believe) twice a month for PID. As I understand it, this may raise or lower her viral titres (toss up). So, anyone had viral titres go up post IG therapy?

Traditional therapy of ssri or ssnri can help if you can tolerate them. I take cymbalta just to help reduce frequency. It does help and I can dismiss them easier when they do occur.

We have used it for about 2.5 years. We use it for rubella titters that we're very high. It worked for that. They went from 169 down to 9.4. I never saw any benefits for add, but my kiddo is not hyperactive. Our immunologist swears it helps with verbal progression in autism, but kiddo is atypical and chooses not to speak because she says it hurts her head.

My kiddo currently has a sinus infection and likely has chronic sinusitis. I just made some xylitol nasal spray (distilled water, xylitol, pickling salt, GSE, and baking sofa). I used on us both a few hours ago (separate bottles) and kiddo has been upset for about 45 min. She started oral abx just for the sinus infection and no herx from that. Has anyone seen a herx when trying xylitol nasal spray? Thanks!!!