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brenda4alek

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About brenda4alek

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    Female
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    Grapevine TX
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    Not much lately. Thought my 19 yr old daughter on autism spectrum was okay until she got PANS at 19
  1. Previously diagnosed with PANS 11/14 and then Lyme 11/15 My 22 year old austism spectrum daughter had her wisdom teeth removed 11/22/16 and did remarkably well. Took care of herself and kept up with her medications. Then the OCD got worse during recovery then on day 8 pre- menstral cycle started acting scattered. Then Dec 1 as she was a work would not come out of the bathroom stall and a female employee had to get her out. We are in the psychotic phase of PANS or flare of lyme. Our immunologist that we go to for PANS said come in for a rocephin shot and our Lyme doctor said it can be a secondary infection from the wisdom teeth or her period or all of the above. Has anyone experienced a flare from PANS or Lyme after a surgical procedure or a monthly cycle and what did you do? Has anyone had a Rocephin shot and how did it work?
  2. One more thing for Pandas (strep) yes antibiotics for viruses Pans antivirals Both cause inflammation in the basal ganglia of the brain: for inflammation yes steroids, prednisone etc thats why for your friends child steroids worked natural anti inflammatories n acytel cystein(sp) tumeric or any NSAID we tried 5 days of prednisone on my daughter just made more agressive Inflammation is the cause of the behavior, rid the cootie and all is good but the inflammation has to be controlled during the process IVIG is one that is used in my daughters case did not work because now the lyme doctor says shes has lyme and we are waiting on rheumatoid arthiritis test with one autoimmune disease may follow others, lupus, parkinson, RA,
  3. I am giving some back history on my high functioning autism spectrum daughter which was very similar, Looking back when she was in her 'fog' during high school it was the start of pans/pandas. My daughters autimmume is to virues Last year July my daughter ended up at Zale Lipshy UTSouthwestern psy ward for 20 days. She was 20 at the time, first flare was to HSV1(fever blister her dad had at age 19. What she experienced was very similar could not watch TV even the ones we loved and watch together. Now she is on the spectrum so with these kids it is even more difficult because most drs will equate their behavior to autism spectrum. however, I told them that she had never acted like this and prevoiusly responded to Valtrex from her first flare at 19 so positively that her boss at the local grocery store said he couldnt believe after 3 years of her working there they never knew she talked so much and was a great kid. She was doing everything without them telling her she was out of the fog. She was a normal 19 yr old trying to catch up wanting to drive go to jr college etc. Her immunologist actually said he believed some of his autistic patients were pans/pandas sufferers and not autistic, because she hasn\t acted this autistic since she was 3 years old! I guess i did a regemine of supplement therepy during middle school years but at end high school i said she is what she is. Thats when ocd got bad, wiping excessively, we had stock in toilet paper we thought just a phase of the spectrum her immune system was starting to attack her After her great respnse to Valtrex Xmas eve 2013 6 months later got sick and this time had a June July 2014 had high titers to chicken pox whiule on Valtrex Lumbar puncture nothing, no lyme in CSF. I told UT Southwestern Zale Lipshy about the PANS they checked for NMDA and was negative, their "autism neurologist guru" said she did not have 'tics' and therefore not Pans/pandas I told him not all pandas kids have tics He completely discounted the quick onset, OCD,the intrusive thoughts, the anxiety so bad she could not urinate. they diagnosed her with 'psychosis NOS' With this being said we 'got off all psycho drugs (she got c diff from hosp) and back on antivirals and anti fungals,probiotics etc, back to work 2014 Nov Only to get flare #3 to her brothers influenza B on Feb 2015 as of today not back. Your friend's child if this continues will undoubtly encounter similar situations at least with her as a typical child this behavior is very abnormal and easy to identify. Her parents will have to find immunulogists receptive to these type of reactions and for goodness sake NO MORE IMMUNIZATIONS this would be hurt to injury. If it is autoimmune likely immunizations got her there. Our immunologist treated a typical 8 year gymnist after she had to flu mist and she got PANs and had to have several IVIG/plasma exchange. Still after over a year not normal yet but managed I even gave an oral immune booster in beginninG...WRONG... AS her immune system attacked her brain even more. We then did IVIG in April no response. Immunologist said go to lyme doctor. It is hurry up and wait to get in to see specialists, ER does nothing but say follow up with ...your doctor, right not her anger is the problem oppositional and defiant. I lost my job in January because my employer knew Iwas out almost a month last year so now 9 months later she is no better. Antipsychotics can do more harm as its the inflammation in the brain that causes the behavior. Our insurance Cigna Greatwest does not cover IVIG or the lyme doctor we go to and the new psychiatrist doesnt take insurance The old psychiatrist doesn't believe in Pans/pandas Its a long road ahead I also want to mention that any parent go to the internet and watch BOUGHTMOVIE.COM you willhave to enter your email but you watch for free this is a very well put together 1.5 hour movie that explains whats happening to our kids sorry for such a long post . Our family does not have a stockpile of money and now down one income its very frustrating. When you go conventional medicine they say psychosis and drug and insurance covers. If you go alternative they find the root cause but insurance doesn't cover, Supplements, probiotics,metal detox, (mercury aluminum in vaccines) cost a lot I pray for all this generation of kids. It seems RH negative kids are more sensitive than RH positive
  4. My daughter fortunately is 21 now got PANS at 19. She had flair #3 Feb 6, 2015 from her brothers flu virus. No way she could work. She STILL is not well. we did IVIG April 24 which MADE HER WORSE. I know its hard but the less exposure the better.
  5. PEX/With Immunodeficiencies

    Where are you located and what doctor did you take your daughter to? We are in a 911 with our 20 year daughter that developed PANS at 19 to viruses,. we see an immunulogist but he can do only so much,. Her self injurious behavior is falling on her butt 5.7 155lbs I've already had xrays on her back now may need MRI. Talk about hurt to injury, she does it when she doesn't get attention. My daughter has all the symptoms you described also they progressively got worse. In her first 2 flares not so bad but in this last flare to my son's flu (Influ she has all the symptoms. We did IVIG April 24 she got worse. We tried prednisone prior for one week and saw nothing but aggressiveness. I lost my job my 18 year son is about to graduate high school and we can't give him the attention he needs. (i'm sure you know this situation all too well) Where is your doctor Email me ssulak9883@aol.com
  6. what essential oils are you using? Thieves? please advise. thnks Brenda 20 yr old another flare then another first flare age 19 to HSV1 her dad had a bad fever blister back in Nov 2013
  7. Valtrex side effects - good or bad

    My daughter has PANS first flare November 2013. She is high functioning autism. Flipped overnite(anxiety, invasive thoughts, separation anxiety)short of long, Dr. put her on Valtrex 500 3 x day within a week she not only was better, but the BEST in her whole life. she was awakened!!!! out of a deep sleep. He mentioned she should take probiotics because Valtrex(antiviral can cause yeast growth just like antibiotics) my daughter's PANS is from viruses HSV!, HHV6 and Varicella (chickenpox) November of 2013 was caused by Dad's fever blister (he has gotten for 30 years + when stressed. Anyway, from December 24 2013 when we put her on Valtrex she was great!!!!!!!! She took kirkman bio complete probiotics but not regurlarly. Then May 1 2014 she got a stomach bug, very ill, pooped blood, multiple emergency visits. They checked the usual suspects. nothing, Had an endoscopy, colonoscopy, nothing. Her mental state was deteriorating. EEG, MRI, nothing. Spinal tap, (lumbar puncture) nothing. Her serum antibody for chicken pox thru the roof !!! Was in a Euless TX hospital for 10 days we removed her and took her to Zale Lipsky Psy admitted thru emergency. UTSW(Univ of Tx Southwest) I told them about PANDAS AND PANS. they checked for NMDA receptor encephylitis. I asked for an immunologists, infectious disease, they said we are addressing this from a psychiatric position she has psychosis NOS. (no idea) The best hospital that Dallas can provide......Ha. they had her So heavily sedated. Our immunologist was out of the country. Where am I going with this. After looking back, me the immunologist, forget Zale Lipsky. What happened was, The Valtrex killed off the good stuff in the intestines that keeps bad bacteria in check and also keeps yeast in check. So she had Clostria Difficule and Yeast overgrowth. C-Diff can cause strange behavior and can eat holes in your intestines and she had PANS (Pediatric autoimmune neuropsychiatric syndrome) She got out of hospital July 29, 2014 after many tests. Her chicken pox titer and HSV and HHV6 still high we put her back on Valtrex 1000 2 x day, also found out she had C-diff (bad bacteria) By November of this year we had her off all antipsychotic meds ie., zeprexa, zoloft, activan you name it. As of November 2014 we had her on Valtrex (antiviral)1000 2 x day Flagyl (antibiotic) 3 x day 150mg to kill c-diff, Dyflucan (antifungal) 150 mg 3 times a week for yeast and 2 Probiotics Bio complete and Sacc/Builllari plus a host of supplements. She was doing great from Nov to Jan 1 2015 then she had a flare because she quit taking the antiviral/antibiotics.(she said she had teeth in her stomach) I let my guard down. We are still battling this, I lost my job Jan 15 due to her flare up. It has now been going on for over a year. we see her immunologist in Plano, TX once a month. He is the one knowledgeable doctor in the area of PANDAS, PANS, etc. Hope this helps. Now with all this being said. It sounds like you already had anxiety before the valtrex, so I don't know how long you took it. But because my daughter was on Valtrex 6 mos I believe the C-diff grew, once we put her on flagyl with the VAltrex she really got better in Nov and went back to work as a sacker at a the grocery store. What i am trying to tell you is. Be it antiviral, antibiotic, side effects include gut dysbiosis. You have to take probiotics for yeast and probiotics that contain yeast for the C-diff. C-diff in itself can cause psychosis. YOU WILL TAKE THE VALTREX FOR A LONG TIME BUT YOU MUST SUPPORT THE GUT AND YOUR IMMUNE SYSTEM IN GENERAL, Your doctor needs to do more blood work up on you to check your vitamin levels. A stool sample can be submitted to check for Clostria Difficule.
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