PANS/PANDAS A SURVIVORS STORY

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  • Опубліковано 4 тра 2018
  • Produced by Madlyn Porter

КОМЕНТАРІ • 161

  • @lucreziavilante5993
    @lucreziavilante5993 3 роки тому +7

    This mother saved her son's life! What a hero!

  • @nurturingconnectionshomeschool
    @nurturingconnectionshomeschool Місяць тому +2

    My son was recently diagnosed with PANDAS after seeking an answer for his symptoms for over 8 years. I am hoping and praying for a miracle.

  • @crazynaska
    @crazynaska Рік тому +3

    You're a warrior Mama Bear fighting for your son, the way your husband looks at you in the video is so beautiful! Blessings to your family.

  • @sharph5748
    @sharph5748 3 роки тому +11

    it is so weird looking at the comments on this video. just for the reason that I have never met another person face to face that also has pandas. It sometimes makes me feel like im alone in the world and that no one will ever understand what i am going through. So seeing these comments with other people expressing that they have it, honestly makes me feel a lot better. :)

  • @chuckschumann9515
    @chuckschumann9515 6 років тому +75

    Thank you for your work to bring awareness to PANS/PANDAS. It is real and devastating. We had success with Plasmapheresis treatments and great help at AMEN Clinic for our son.

    • @fatjontaullau7141
      @fatjontaullau7141 5 років тому +2

      Please help me. I think my nephew has this syndrome. he has tic. How was your son recovered? Are you cured of this syndrome? please respond to me

    • @dilbydoe4868
      @dilbydoe4868 5 років тому +9

      Fatjon Taullau I’m 29 I had it since 15. Check for infections if there is no infection make sure they change there diet to a anti inflammatory diet I thought it was just strep but we found out stomach problems can flare me an other pandas people to. Once the inflammation is down I can recover

    • @HappyLeeFitness
      @HappyLeeFitness 5 років тому +2

      which amen clinic?

    • @hautecouture2228
      @hautecouture2228 2 роки тому +1

      Amen

    • @Hayden734
      @Hayden734 2 роки тому +1

      @@HappyLeeFitness Dr. Daniel Amen the brain guy?

  • @lynzi6699
    @lynzi6699 4 роки тому +25

    OMG this is what I'm currently struggling with in regards to my daughter.....my heart goes out to every family and every person dealing and living with this horrible sickness....so sad watching ur child struggle and as a parent u can't fix it

    • @dignal8399
      @dignal8399 2 роки тому +2

      Hi how is your daughter my daughter is going thru, it’s really hard

    • @GrantAndKelli
      @GrantAndKelli Рік тому

      Same here with my daughter for the past 6 years

  • @oonashanley6687
    @oonashanley6687 6 років тому +40

    Thank you for your courage to share your story and raise awareness of PANDAS.

  • @beefywilderness
    @beefywilderness 4 роки тому +12

    Thank you for this. I used I have PANDAS around the same age as him and I appreciate you are trying to raise awareness. 😊

  • @ThatBlackPiano
    @ThatBlackPiano 2 роки тому +6

    His withdrawal phase sounds very reminiscent to Hikimori. People with PANS & PANDAS need monitors they can wear to regularly test their blood throughout their daily lives & send results immediately to emergency contacts, primary care physician, & the wearer’s smart device. Sort of like those wearable glucose monitors. This way, the6 wouldn’t have to wait for behavioral signs that the levels may be changing; don’t want any other PANS/PANDAS person to suddenly have supe4 elevated levels that get them killed before anyone has a chance to save them.

  • @breylace12345
    @breylace12345 3 роки тому +7

    GOD BLESS YOU MAMA BEAR FOR DOING YOUR RESEARCH AND NOW SHARING THE KNOWLEDGE XOXOXOXO #ADVOCACY#PREVENTION

  • @ElChicleSeMePego
    @ElChicleSeMePego 4 роки тому +5

    GOD IS GOOD. Proactive momma, love you! God bless!

  • @sheilasteed5846
    @sheilasteed5846 4 роки тому +5

    My nephew was just diagnosed yesterday. The doctors have said that his case is very rare. Thanks for posting

  • @mandyblackwell3027
    @mandyblackwell3027 4 роки тому +5

    I’m so thankful you’ve made this video of awareness. Your sons story almost mimics my sons. We’ve tested for all sorts of things and doing the cycle of meds with zero improvement. He’s now 20 and I’m blessed to have found your video. I wasn’t sure this could be it due to his age. I’ve found a pans dr and will hopefully see him next month and get answers/help. I’ve watched this a million times. Just wanted to say thank you and it’s gives me hope and increases my faith we can get his life back.

  • @bgurtek
    @bgurtek 2 роки тому +3

    This story needs to be spread around the whole world!!!!!!!!!!!!!!!!!!!!

  • @mintieu
    @mintieu 3 роки тому +4

    Wow what a testimony of answered prayer thank you Jesus, praying for more knowledge and permanent treatments in Jesus name. Praise God for researches seek and you shall find :)

  • @hssu9076
    @hssu9076 5 років тому +9

    Wow! This video is very informative, you are doing a great job on explaining the symptoms etc. I am so sorry that your family is going through this and for the loss of your friend's son. Glad that you guys found the diagnosis and are bringing awareness to this disease. I came here from the ABC snippet on PANDAS, hopefully this will get more views. And congratulations to your son on starting college, that's wonderful. Take care.

  • @Lauren-tf5ri
    @Lauren-tf5ri 5 років тому +25

    Hello! Thank you for you’re article, I am a college student doing research on PANDAS and every bodies stories are so helpful! Hopefully we will find a full cure for this disorder

    • @buksiblingsfun8906
      @buksiblingsfun8906 5 років тому +1

      Lauren hi, I was curious is (with proper treatment) pandas can go away in puberty? Maybe you have an answer.

    • @esmeraldagreen1992
      @esmeraldagreen1992 3 роки тому +2

      @@buksiblingsfun8906
      No, it will not, because it is not a brain chemicals imbalance, it is an infection

    • @tiredcitizenz1925
      @tiredcitizenz1925 3 роки тому

      @@buksiblingsfun8906 You're very crazy

  • @Kriszee4
    @Kriszee4 5 років тому +6

    God bless you and your family, Max.

  • @juliabell5895
    @juliabell5895 5 років тому +19

    this video was so helpful. I was just diagnosed and hearing you and your families story has given me more hope

  • @meld5799
    @meld5799 4 роки тому +2

    God bless all of your families. And for bringing this to light. I am struggling to find out what is going with my 4 year old and it fits these so close.

  • @raeducky2994
    @raeducky2994 4 роки тому +6

    Out of all the stories ive watched and read, yours stands out because you spoke about praying for your son and behold, you found your answer. The Lord heals through prayer and I’m saddened that most families with this disease don’t consider praying for their child. We wrestle not flesh and blood but against principalities, against fallen angels. God bless your son. 🙏🏻

    • @giovanniikon4364
      @giovanniikon4364 Рік тому

      Just praying doesn't do it. The love for their son did it. Doctor after doctor and not giving up

    • @raeducky2994
      @raeducky2994 Рік тому

      @@giovanniikon4364 thats your opinion 🤷🏻‍♀️

  • @stacyhigginbotham2015
    @stacyhigginbotham2015 6 років тому +21

    Thank you for this! My son Jace was diagnosed at 3 he is 4 now. He got sick at 2 and was not diagnosed untill a year later. He's been on antibiotics since October. We tried to take him off but he regressed. Can't afford ivig so we're completely at a loss.

    • @JustMeELC
      @JustMeELC 5 років тому +7

      Stacy Higginbotham In Canada treatment would be paid for! Nobody has to suffer or die because they don't have $$$. Stop believing what you are being told about healthcare & vote accordingly.

    • @kristylinzie7550
      @kristylinzie7550 5 років тому +3

      I'm having a hard time finding somewhere that will see my daughter for pans. Doctor's here are not aware of this and don't want to

    • @bhagsunath
      @bhagsunath 5 років тому +5

      Stacy Higginbotham why dont u look forward for ivig treatment in other countries . Some countries have really cheap medical facilities . I am from india i m hearing abt this diseases first time . I dont know much abt treatment but india is cheap for Americans may u can find ivig treatment here

    • @hailstormk9417
      @hailstormk9417 5 років тому +2

      Hope Jace gets better soon!

    • @pedinurse1
      @pedinurse1 5 років тому +3

      did you write to the company making the IVIG????

  • @esmeraldagreen1992
    @esmeraldagreen1992 3 роки тому +4

    They need to be put on low doses of antibiotics for a year. They need to do cycles of 3 months on and 3 months off, otherwise the immunoglobulins therapy alone is of limited usefulness. This is how it is treated in Europe.

  • @tracyleekley1353
    @tracyleekley1353 2 роки тому

    I am so so so glad your family found the diagnosis and treatments. That is incredible news!

  • @cynthiahunter519
    @cynthiahunter519 5 років тому +6

    How awful! Prayers. I've never heard of this before!

  • @joekuhl3500
    @joekuhl3500 3 роки тому +4

    The dad looks absolutely defeated. Its not your fault brother. Keep your head up!

    • @mindofchristasmylens3814
      @mindofchristasmylens3814 2 роки тому

      This family has been through HELL AND BACK. This vid doesn't begin to describe their intense suffering. Lesser men would have melted in a puddle on the floor or run away from their family by now. Many props to Jason for being a faithful and strong man of God; he made it through the crucible.

  • @analopez-mk8oe
    @analopez-mk8oe Рік тому

    Thank You For sharing your Story. I being praying for an answer . Thank you I'm glad that your Son is doing better. My deep condolences goes to Max Family God Bless You All🙏❤️🙏

  • @keynolivia
    @keynolivia Рік тому

    This is my family’s exact story. I’m blown away watching this video. Georgia needs to speed up their support for families like mine. Insurance covers none of the treatment in my state.

  • @ritamariekelley4077
    @ritamariekelley4077 2 роки тому +1

    Well done, parents! Wonderful you went into action as your son's advocate.

  • @gabriellaerby5010
    @gabriellaerby5010 2 роки тому +1

    Glad he’s okay I’m from hot springs Arkansas and I think I seen him before looks familiar prayers to you and your family

  • @mamachicken1548
    @mamachicken1548 3 роки тому +1

    Thank you mama for getting the msg out because it will help so many other families too!!

  • @MusicEchos
    @MusicEchos Рік тому +1

    Years ago 3 people in my family had some kind of coughing illness. None went to doctor. It lasted longer than a cold. My younger sister was one of the 3 that had the cough. Within a few months or years my sister went on to have paranoid
    schizophrenia. She wasn't able to tell us when something changed in her brain.

  • @bradybutler240
    @bradybutler240 4 роки тому +4

    I had pandas! You need to remove his tonsils because that fixed it for me! GOD BLESS YOU!!!

    • @kristinasnyder3696
      @kristinasnyder3696 3 роки тому +3

      My nephew has pandas and also had his tonsils removed but he still has it. What else did you do

    • @tiredcitizenz1925
      @tiredcitizenz1925 3 роки тому +1

      @@kristinasnyder3696 IVIG

  • @annipsy2185
    @annipsy2185 6 років тому +12

    Omg Max, im sooo sorry:(

  • @jamminjammies7802
    @jamminjammies7802 3 роки тому +1

    Yesterday I told my daughter about Pandas, and she didn't believe it. Today after reading about the "Girl Who Couldn't Stop Sneezing", she believes. I'm glad we know, because she thought she was to blame for the (depression, anxiety, and rage) exhibited by her daughter. We thought it was hormones /ADHD, until she started talking about wanting to die and running away. She is also hard to reason with.
    We both have medical backgrounds, and are herbalists. The blood purifiers seem to be helping, but traditionally, Amoxicillin sounds right to me as well. An immunologist is using gamma globulin which seems to work as well and seems to be helping some young people.

  • @octaviawhitaker2987
    @octaviawhitaker2987 4 роки тому +4

    Hello, I am just learning about this disease and all symptoms seems to fit my 7 yr old daughter and I leave in Arkansas as well. I am trying to contact several doctors to see if they are aware of it to help with my daughters issues.

  • @conniegonzalez7797
    @conniegonzalez7797 2 роки тому +1

    Thanks for sharing. My son started with symptoms at 13 and was diagnosed with Tourettes and due to his OCD he was bullied at school and having to be schooled at home. His OCD got bad at 16-17 controlling food intake and had gotten so thin he would pass out. Praise God he’s doing better even though OCD is there with hand washing and bathroom visits for 2 hours, but he’s been able to complete high school and now online computer courses. People need to know PANS and PANDAS is real. A psychologist was the one who diagnosed him, but no available treatment in Spain, it is unknown here too. Awareness is essential!!!

    • @dignal8399
      @dignal8399 2 роки тому

      Hi. How is your son doing now, anything helped I have a 14year old with same symptoms

    • @conniegonzalez7797
      @conniegonzalez7797 2 роки тому

      @@dignal8399 has had no treatment. Very smart. Into programming and maths. But, no treatment.

    • @dignal8399
      @dignal8399 2 роки тому

      @@conniegonzalez7797 oh wow Im great he is doing good so far like you said some OCD the only issue I have now is that she was recently positive for strep no symptoms yet but I’m worry

    • @conniegonzalez7797
      @conniegonzalez7797 2 роки тому

      @@dignal8399 praying she’s completely healed!! Nothing is impossible for God!! He loves our children more than we can imagine!! He’s in control!!!

    • @dignal8399
      @dignal8399 2 роки тому

      @@conniegonzalez7797 Amén thank you. Prayers are all and yes JESUS love us

  • @rebeccac.1758
    @rebeccac.1758 11 місяців тому +1

    His brother looks like he could used some therapy himself. He looks defeated.

  • @debbietominna1707
    @debbietominna1707 2 роки тому +2

    Thank you so much for this video, this is our 16 year old son exactly and finding help in Arizona is just not working for us. We are trying very hard and our Immunologist is trying to treat but he is not an expert. I wanted to ask you a few questions do you have a website or a contact that I could ask you a few questions. We will do anything to save our son and refuse any other psychiatric treatment centers. We need help and feel so desperate.

  • @raquelcornejo230
    @raquelcornejo230 Рік тому

    I’ve heard of testimony that deworming with enemas helps a lot. God bless your family with healing in Jesus name.

  • @mapatr1
    @mapatr1 3 роки тому +2

    It’s kind of weird that all the videos I’ve watched about PANS have been 2 years from now

  • @jenniferthompson7719
    @jenniferthompson7719 5 років тому +7

    My niece gets ivig at Children's in arkansas

  • @raquelcornejo230
    @raquelcornejo230 Рік тому

    A woman of faith ❤

  • @BoutMeHealingCiceRivera
    @BoutMeHealingCiceRivera 2 роки тому

    Thank you from the bottom of my heart!

  • @ericadawnb
    @ericadawnb 4 роки тому +1

    I believe 2 of my sons have this. I am now looking for help to get a diagnosis. A new treatment I am looking into now is DMSO. Have you heard of this?

  • @ali-cy6wg
    @ali-cy6wg 5 років тому +5

    My sister has PANDAS and I don’t know what to do. If anyone else has a sibling with PANDAS just let me know. Please. I know this is such a hard thing to go thru. I know.
    I’m young, so I won’t use the scientific stuff.
    Somehow PANDAS makes her crazy and she screams such hateful stuff. I know she can’t help it. Someone just talk to me. Please

    • @seph1109
      @seph1109 3 роки тому +2

      Pandas will go away with treatment. Ik its hard but it will go away. I hope the best for u

    • @dignal8399
      @dignal8399 2 роки тому

      Hi how is your sister doing?

  • @martamccurdy1379
    @martamccurdy1379 2 роки тому

    I pray for a full and complete miracle healing for Cam in Jesus name!

  • @Bumblexo
    @Bumblexo 3 роки тому +1

    PANS/PANDAS awareness!! 👏 RIP to Max Wallace :(

  • @amberloft6019
    @amberloft6019 5 років тому +6

    correct me if i am wrong but doesnt the P in PANDAS/PANS stand for "Pediatric"???

    • @roryrand9639
      @roryrand9639 4 роки тому

      Amber Loft yeah

    • @roryrand9639
      @roryrand9639 4 роки тому +1

      Pediatric is until ur 25 and even then it doesn’t go away completely

    • @Leamoyer
      @Leamoyer 4 роки тому +2

      Amber Loft yes because that is usually when it’s acquired. My daughter was 8. They don’t get automatically cured when they turn 18. My daughter is now 19 and still struggling.

  • @Lindsaytaylortaylor
    @Lindsaytaylortaylor 3 роки тому +1

    My daughter has this. She is suffering so much. We are getting treatment and are hopeful she will improve

    • @dignal8399
      @dignal8399 2 роки тому

      Hi how is your daughter doing. I have a 14years old no help

  • @chucknichols9891
    @chucknichols9891 5 років тому

    My son has PANS what were his triggers/infections

  • @pedinurse1
    @pedinurse1 5 років тому +2

    Have you contacted Dr Susan Swedo who first recognized the disease??????

  • @awwk8452
    @awwk8452 4 роки тому +1

    I had pandas but not anymore it’s not bad at all. It just makes u nervous for everything

    • @Jxspur
      @Jxspur 3 роки тому

      How did you fix it

    • @dignal8399
      @dignal8399 2 роки тому

      Hi how did you fox it?

  • @horselover7216
    @horselover7216 4 роки тому

    I think i have PANS. How do i get them to shift from FND to PANDAS

  • @buksiblingsfun8906
    @buksiblingsfun8906 5 років тому +2

    So... with treatment it can go away in puberty or did I misinterpret?

    • @buksiblingsfun8906
      @buksiblingsfun8906 5 років тому

      Koala From Tomorrow I’m sorry if I offended you. I dont quite understand your reply...?

    • @buksiblingsfun8906
      @buksiblingsfun8906 5 років тому

      Koala From Tomorrow ah thank you very much

    • @sarahjohnson6407
      @sarahjohnson6407 Рік тому +1

      No it can’t. Despite it having the word pediatric in the acronym, it can affect anyone and sadly doesn’t just disappear when you reach a certain age.

  • @sarahnicole181
    @sarahnicole181 Рік тому +1

    Is there a way for a children's hospital to test for this panel? I'm here now, I believe my son has this

  • @c.k.1530
    @c.k.1530 Рік тому +1

    Please try Anti parasites
    Seems to work with someone with schizophrenia symptoms which is similar
    My loved one has episode every month after more than six months almost normal but not yet cured

  • @marthad2u
    @marthad2u Рік тому

    We lived in Denver and none of the doctors wanted to spend the time to read the details to help 😢

  • @Maratrushka
    @Maratrushka 2 роки тому +1

    Brain inflamation. What about antinflamatory medicine? Mix with antibiotics?

  • @ronaalexander825
    @ronaalexander825 5 років тому +1

    The Silver/Aloe protocol would be beneficial and it would not damage the gut microbiome like antibiotics. It can be found at Robert Scott Bell . Com

    • @elsagrace3893
      @elsagrace3893 2 роки тому +1

      All the natural stuff is completely useless for autoimmune disease. You have no idea how serious it is or how many bodily systems are effected.

  • @ronibopshop
    @ronibopshop 4 роки тому +1

    How is Cameron doing now?

  • @Autismanswer
    @Autismanswer 25 днів тому

    Ivig didn’t help my son. Was ivig the only thing that helped? Did you do anything else besides antibiotics and anti vitals?

  • @MrBowhunter502
    @MrBowhunter502 5 років тому +2

    My daughter is autistic and had strep today is day 16 with 0 food intake she is 4 years old and my body is telling me she has pans

  • @kristylinzie7550
    @kristylinzie7550 5 років тому +3

    My daughter is having horrible pans symptoms. I'm having a hard time finding someone to treat her.
    Do u have resources as to who I can take her to? We feel so helpless

    • @dignal8399
      @dignal8399 5 років тому

      Kristy Linzie Hi did you get any help my daughter is going thru the same and is frustrating when there’s nothing you can do.

    • @elsagrace3893
      @elsagrace3893 2 роки тому +1

      This is a medical issue not a psychiatric one. The doctors HAVE TO help you. They can’t turn you away. Keep at it. Keep making appointments. Show them video of tantrums. Provide them with info on PANDAS. Demand treatment. It’s your right.

  • @bocawilliams9200
    @bocawilliams9200 Рік тому

    PANDA!

  • @mindofchristasmylens3814
    @mindofchristasmylens3814 3 роки тому +1

    Did this family make this video? If anyone knows how to get in touch with The Puckett family please message me. We are going through something very similar with our 15 year old son. It is horrific and we need to talk to someone who has made it through. Please HELP.

    • @dignal8399
      @dignal8399 2 роки тому

      Hi did you get any help?

    • @gildafoss
      @gildafoss Рік тому

      Did you receive help for your child?

  • @snailss1964
    @snailss1964 3 роки тому

    As a person with pandas I don’t like ‘it’s like ur kid is kidnapped right infront of your eyes’ he’s still your kid dude! They’re just different

  • @lacubanahernandez4860
    @lacubanahernandez4860 5 років тому +2

    I need help my grandson just got diagnosed with pandas help !!

    • @dilbydoe4868
      @dilbydoe4868 5 років тому

      I’m 29 I had it since 15. Check for infections if there is no infection make sure they change there diet to a anti inflammatory diet I thought it was just strep but we found out stomach problems can flare me an other pandas people to. Once the inflammation is down I can recover

    • @xxxfloridaboy2661
      @xxxfloridaboy2661 5 років тому

      when i was 5 and had pandas bad, they put me on Penicillin for a year or 2 and also got therapy and it helped with my ticks and ocd. also healthy diet and exercise helps. Certain vitamins like probiotic or B12 can help. There is some specialists out there if you have the money.

    • @dignal8399
      @dignal8399 2 роки тому

      @@xxxfloridaboy2661 hi how are you doing now?

    • @xxxfloridaboy2661
      @xxxfloridaboy2661 2 роки тому

      @@dignal8399 Much better than when I was a kid but being a member of society is hard and forming intimate relationships is hard. It’s hard not to take drugs or alcohol but i’m trying.

    • @dignal8399
      @dignal8399 2 роки тому

      @@xxxfloridaboy2661 it is hard

  • @zoey3904
    @zoey3904 2 роки тому

    That what I'm going those

  • @kirbyrobertson8879
    @kirbyrobertson8879 5 років тому +1

    Made a new community for individuals and families with PANDAS:
    reddit.com/r/PANDASsyndrome

  • @johnbeard8514
    @johnbeard8514 2 роки тому

    So sad.

  • @giovanniikon4364
    @giovanniikon4364 Рік тому

    UA-cam- the Michael sanicola story. Related to P.A.N.D.A.S

  • @Seruleo_
    @Seruleo_ 10 місяців тому

    For everyone looking for answers.
    FUNCTIONAL MEDICINE
    FUNCTIONAL MEDICINE
    FUNCTIONAL MEDICINE

  • @winnanne1
    @winnanne1 2 роки тому +4

    So why is no one making the connection between auto-immune neurological disorders in children and adolescents and the increased vaccine schedules. This is something that now effects as many as one in every two hundred children. Just like the numbers of autism cases has steadily increased over the past two decades. This has to be something that has changed in the environment that directly effects children and early teens.

  • @niniquint6249
    @niniquint6249 3 роки тому +1

    please contact me. I would like to help my son who has this condition. I would also like to raise awareness.

  • @krystalsmith5180
    @krystalsmith5180 4 роки тому +7

    Most patients develop Strep Throat days after their Vaccine the a month later got Pandas/Pans syndrome. To me, the medical industry just came up with a new name for the more severe Autism, Tourettes and OCD caused by their vaccines

    • @AjLloyd-uy2tr
      @AjLloyd-uy2tr 4 роки тому +2

      Krystal Smith 100%. The correlation between vaccinated countries and autism is too strong to ignore

    • @katzy43
      @katzy43 3 роки тому +1

      These kids did they all had the childhood vaccinations?

  • @Internet_user777
    @Internet_user777 5 років тому

    God how much do these treatment cost.... I hope they are covered by insurance....

  • @6ltk
    @6ltk 2 роки тому +1

    This is the fucking worst disorder/disease ever, i hate it.

  • @HopeHempstead
    @HopeHempstead 5 років тому +7

    There is NOTHING too big for Jesus Christ, the Great Physician!

    • @carysrose819
      @carysrose819 5 років тому +3

      I'm a PANS survivor and it stole my entire childhood.

    • @amandaconticello2120
      @amandaconticello2120 4 роки тому +3

      Seriously? Actual doctors are the great physicians...not storybook characters.

    • @maryw3052
      @maryw3052 3 роки тому

      @@amandaconticello2120 lol

    • @dignal8399
      @dignal8399 2 роки тому

      Amén