Posts posted by Mayzoo
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).On 6/7/2021 at 2:27 PM, MarylandMama said:
We aren't able to get an appointment with the neurologist until the end of July but the scheduler told me that their office has had a flood of calls due to flares after a COVID vaccine. We are going to delay our child's second dose of the vaccine until we can get direct guidance from the neurologist if there are some measures we can take to help her get the next dose without making things a lot worse. In the meantime, we will be attempting to self-treat and try to calm the inflammatory response until we can get into the office. If anyone has info on that side of things, let me know. Best of luck, ejh, and all!
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:
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.
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.
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?
My daughter tested positive for strep, by culture, for over 60 days. The only thing that got rid of it was 45 days of Zithromax.
If you do not do well on zith maybe try augmentin. It is amoxicillin boosted with clavulonic acid.
There are also numerous medical articles you could print to show your rummy that strep is in fact resistant to penicillin. Here is just one that mentions penicillin 6 times:
"The failure of penicillin to eradicate Streptococci from the throat occurs in up to 35% of patients with pharyngo-tonsillitis."
If you want more look here: https://scholar.google.com/scholar?q=group+a+strep+resitance+to+antibiotics&btnG=&hl=en&as_sdt=0%2C44
I am sorry, but I lost your phone number. If you want to talk/vent/cry to someone feel free to pm me your number.
I find it a bit odd that the doc is giving two abx that are so closely related. Augmentin is amoxicillin and clauvulanic acid and keflex is a "first cousin" so to speak of amoxicillin.
Not to say this cannot be done, but if you do not see enough improvements on this regimen, you may ask that one (probably keflex) be swapped with an abx in another category such as macrlide (Biaxin, Zithromax etc...).
Thanks for the replies, support and encouragement.
In doing more reasearch it appears ACA has already had large portions approved for repeal by the house and the senate (**BUT** vetoed by the president, so it was negated) in winter of 2015.
The good news out of that is that when Congress passed the repeal they had in place a 2 year transition period. There is no telling what they will do this time around, but that does give me a bit more hope that we can hopefully get in a few rounds of IVIG before she becomes unisurable again.
We are faced with IVIG now too. Not sure if your child/patient has PI, but here is what I found tonight:
"Intended for US audiences only
Questions? Call 1-855-250-5111.
Let's face it. Health insurance can be daunting and confusing, especially when you have a chronic condition like primary immunodeficiency (PI). And even with insurance, paying for treatment can be tough at times. When you enroll in MyIgSource, you'll receive support to help you understand and manage your insurance, and you may be eligible to receive financial support, including a copay card for Baxalta Ig products for eligible patients with PI.
MyIgSource can connect you with insurance experts who can help you better understand things like:
Insurance terminology and insurance basics
The ins and outs of choosing a new plan
How to manage coverage transitions
How denials and appeals work
What to expect if starting a new product
Additionally, we understand the challenges that may come from starting a new treatment and living with a chronic disease such as primary immunodeficiency. Thats why we offer health insurance coverage support for patients. See how we can work with your doctors and insurance companies to help you access the immunoglobulin (Ig) treatment your physicians prescribe.
For eligible PI patients with commercial (private) insurance, we offer financial support including a copay card for Baxalta Ig products to help ease the financial burden of immunoglobulin (Ig) treatment. To learn more about these programs, visit the product pages in the Baxalta Treatments section.
If you lose your health insurance coverage, we may be able to help you receive Baxalta products at no cost (For those who qualify. Financial criteria apply.). To learn more about this program, call 1-888-229-8379.
Reach Out for Support
Start taking advantage of all the resources and tools this program has to offer.
or call 1-855-250-5111"
USBS/MG89/16-0144 October 2016
Here are a few more resources on finacial aid/Patient Assistance:
Thanks for response and the encouragement. For my child's sake, I have to to be more proactive than normal now.
Republicans have tried to repeal Obama care in its entirety 6 times since its institution, and and additional 56 votes to repeal parts of it. They did not have an alternative then, they do not have an alternative now. Now that the republicans have the house, senate and presidency--nothing will stop them from repealing it. I expect it to be be repealed within the first 3 months, and either no transistion or at most a 6-12 months transistion. Unfortunately, there is nothing for her to transition to. When I last checked, a minor cannot be on an insurance plan alone. Hubby and I are fine with concept of us not having insurance. We are not fine with her not having it.
Having been in the position for years having an uninsurable child, I can assure you the general political view (not just republicans) is every man for themselves. "If you can get insurance, good for you. If you can't, don't whine to me because I have insurance." Amoung other things, our kiddo has Arnold Chiari Malformation and Syringiomylia. Years ago, those put her on the uninsurable list.
When we first started the journey with our child being unisurable (roughly 2005), we went to a lawyer for advice. His advice then was we needed to divorce, sell everything we own, buy lottery tickets and keep the receipts to prove we no longer had any money or assets....then we might qualify for help---but we also might not.
Regardless my entire focus now is to ensure I have all the plans I can so she is not thrown into a complete medication void overnight. I actually started doing some things a few months ago in anticipation of this outcome. I just must ramp it up exponentially now.
I can adapt and aquire her meds on my own. I am not sure about the IVIG if we should even bother starting or would only being able to do one cause more harm than good. I have read so many threads were one was simply not enough and I do not want to do more harm than good. Obviously, no one can tell me for sure, but I am just looking for others experiences with only doing one.
My Daughter has consistently had low IGG and IGA with normal to high IGm. Her latest results are:
Igg 469 Normal 716-1711
Igg subclass 1 273 Normal 347-993
Igg subclass 2 91 Normal 140-440
Igg subclass 3 12 Normal 23-117
Igg subclass 4 5 Normal 1-83
IgA 49 Normal 51-220
IgM 247 Normal 59-220
We cannot afford to pay cash for IVIG. Her current insurance may approve it, but she just lost her with the election last night. If we are lucky, we may be able to get one dose of IVIG before her insurance is canceled. Without Obamacare, she is labeled as uninsurable. Prior to Obamacare, she was in what was called a risk pool; which was a group comprised of otherwise uninsurable people, but this plan no longer exists. Since this no longer exists, she is now unisurable again.
I am preparing her medically for the repeal Obamacare within the next 4-8 months. Starting today, we are adjusting her meds and supps to what we can afford cash outright, this way it is a slow titration off meds and/or different meds rather than an abrupt and all at once stoppage.
My question is with these numbers, would you do an IVIG one time knowing you will not be able to do another one for about 3 years if ever? Could doing just one do more good than harm?
Hello. I am in Austin, Texas and am looking for a doctor familiar with PANDAS to give a possible diagnosis. Has anyone had experience with doctors in the Austin area? I'm also willing to travel.
- *Dr. Sesgagiri Rao (Leading PANDAS Physician)
will treat more complicated cases involving PANDAS and Autism
- *Dr. Bruce Russell (Leading PANDAS Physician)
Port Aransas, TX
May not be accepting new patients.
Will treat more complicated cases involving PANDAS and Autism
- Dr. Shreenath Doctor
Neuropsychiatry and Clinical Pharmacology
- *Dr. Sesgagiri Rao (Leading PANDAS Physician)
No, and my state just went to all HMOs, so it unlikely to be an option any longer. Her doc is not an insurance option, so I do not know if he orders this, would the insurance cover it. Probably not.
We are waiting until we get her viral titers under more control before spending that kind of money on IVIG. If her titers are way out of control, as I understand it, it may help for a few weeks, but the viruses will just kick back in and negate all progress we make.
Most her viral titers are dropping, but are still almost 10 times higher than they should be.
EBV, varicella, HHV-6 are all 10 times or more higher than they should be. Others are high too, but those are the biggies right now.
Temporary Zoloft use - Helpful or Harmful?
in PANS / PANDAS (Lyme included)
For us, it was rather neutral. I did not see negatives or positives really after a few months so we just stopped it.