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Roll Call/ For all with 1st (known Exacerbation) after a LIVE flumist?

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it's been two years for us but both of parents recall, strep, flu mist, PANDAS within months for dd.

her brother was too young for the mist at the time and had a shot instead. he did not get pandas at that point.

Edited by pr40
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Both of DD's exacerbations were associated with live attenuated vaccination (MMR), but not with flumist. Our family has never used that specific vaccine.


Dd's intial gradual loss of speech and fine motor ability happened shortly after a significant fever produced by her 15 month MMR vaccination.


Her second exacerbation and the beginning of her PANS symptoms at 7 years of age, began approx. 1 month after the MMR booster. During this time, however, she also had an unidentified bug bite with non-EM rash.

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Both daughters.


Both girls had first ever Flu Mist in Dec (5 yrs ago). Both were diagnosed w/ strep and PANDAS within 2-3 mos.


(Both had one previous uneventful case of strep one plus year prior.)


This doesn't show causation- but I would never consider the flu most again.

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I feel the need to respond. Our situation is very similiar. Dd5 was sick with fever, swollen adenoids, sinuses, glands, & tonsils. Took her to Ped. who could not find any obvious signs of infection - felt it was allergy triggered. We treated with Advil and allergy nose spray and dd was better. Five days later I take her in for her 5 year well visit where she gets a combination flu vacc. and whatever the 5yr. booster is. Within days she develops a mouth opening/ neck dipping tic. We also find out that the same day she had the well visit that her bestie is diagnosed with strep.


One month later we are back at the Peds. as the tic has morphed into complex tics involving shoulder shrugs, arm flails, mouth opening, neck dipping, and eye blinking. Ped. Immediately suspects PANDAS and does strep cultures and orders labs. Negative cultures and sky high ASO - never had classic strep symptoms. We saw ENT, Ped. Neurologist, Psychologist (Dr.Elia) to rule things out/ confirm diagnosis. Almost 2.5 years later .... Here we are still battling. No more vacc. For her !

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Good for you and your child if you made the Flumist/PANS connection soon after vaccination.


My son's PANS onset was not after the Flumist but he did exhibit his WORST exacerbation after the Flumist at age 9. He fell apart in front of our eyes but was not diagnosed with PANDAS/PANS until 4 years later at age 13. He has been climbing out of that pit of he## ever since. His onset of symptoms was post-appendicitis/peritonitis at age 4.

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I have always thought that the FluMist was a big factor in my son's condition. Within one week of receiving the Flu Mist, he started having extreme anxiety, OCD and extreme sensitivity to light. I definitely think there's a link. Sadly, my son received this vaccination in October of 2010, and we're still dealing with the debilitating impact of this horrific disease.


He's been diagnosed with Autoimmune Encephalitis, and is currently undergoing extensive immunosuppressant therapy, as well as monthly IVIG infusions.


Progress has definitely been made, but we still have a long way to go.

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Hello - my son had the flu-mist in Oct. 2013 and 5 days later started counting all the time and had anxiety. Lasted 4 weeks and went away before we got into see a specialist who confirmed Lyme IGG by CDC standards, and autoimmune encephalitis (clinical diagnosis). Started antibiotics and continue to be symptom free (OCD non-existent now) 2 months into ABX. Immunologist wants to try for IVIG (not sure we'll get insurance coverage) in hopes to improve long standing sensory processing dysfunction along with newly diagnosed learning disabilities (dyslexia, working memory below average, fine motor all uncovered with testing for IEP at school). I was told his PANS case is mild. Not sure what to think on why his Dr is pushing IVIG as I thought that was helpful in severe cases with debilitating constant flares.

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The meningococcal and tetanus vaccines are killed vaccines.


I found this posted by Royal Free Hampsted contradicting the use of live attenuated vaccinations in immunosuppressed patients. I guess we don't know if our children have immune suppression until they adversely react to a live vaccination.




If your immune system is suppressed because of the medicines you are

taking, you must avoid live vaccines.


Immunosuppressed patients can safely receive the following vaccinations (which are not live):

Polio (ONLY inactivated named-patient product from RFH pharmacy)



Haemophilius influenza (Hib)

Hepatitis A

Hepatitis B

Mantoux test

Meningococcal A

Meningococcal C



Typhoid (injection)

Typhoid/Hep A combination (injection)





Immunosuppressed patients should not receive the following vaccines

(because they are live):


Polio (oral)

Yellow fever

Typhoid (oral)


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Here is another list:





Live vaccines


  • Bacterial vaccines
  • BCG vaccination.
  • Typhoid vaccination (oral).
  • Cholera vaccination (oral).
  • Viral vaccines
  • Measles vaccination.
  • Mumps vaccination.
  • Rubella vaccination.
  • Oral polio vaccination (Sabin).
  • Yellow fever vaccination.
  • Varicella (chickenpox) vaccination.
  • Rotavirus vaccination.
  • Japanese encephalitis vaccination.


Inactivated vaccines

  • Bacterial vaccines
  • Pertussis vaccination.
  • Cholera vaccination (oral, combined with recombinant B subunit).
  • Anthrax vaccination.
  • Plague vaccination.
  • Viral vaccines
  • Influenza vaccination.
  • Hepatitis A vaccination.
  • Injectable polio vaccination (Salk).
  • Rabies vaccination.
  • Tick-borne encephalitis vaccination.
  • Japanese encephalitis vaccination.


  • Diphtheria vaccination.
  • Tetanus vaccination.

Polysaccharide extracts of virus

  • Haemophilus influenzae type B (Hib) vaccination.
  • Meningococcal A and C vaccination.
  • Pneumococcal vaccination.
  • Typhoid vaccination.

Genetically engineered

  • Hepatitis B vaccination


The immune response may be humoral (as with most bacterial vaccines) or cell-mediated (as with live vaccines, including BCG).

Live attenuated vaccines produce longer-lasting immunity, similar but less than that produced by natural infection. Often one dose confers long-lasting immunity, but they are inherently less stable than killed vaccines, with the possibility of reversion to wild strain, as in polio. Some may spread, enhancing herd immunity but putting at risk the immunocompromised.

Inactivated vaccines usually require a series of primary vaccinations followed by boosters. Some of these vaccines have adjuvants (for example, aluminium hydroxide, aluminium phosphate) to enhance the antibody response. There is no risk of person-to-person spread, and the vaccines are more stable.

Edited by rowingmom
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