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Parents of children diagnosed with PANDAS

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L_Haven
L_Haven

I am the parent of an 11 year old diagnosed with PANDAS. I'd like to correspond with other parents whose children share this diagnosis; perhaps we can share information, experiences, and hope.

9 likes, 128 replies

128 Replies

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  • jenbee136
    jenbee136 L_Haven

    Posted

    Hi all ...after weeks and months of trawling the internet for some answers I have stumbled across PANDAS!! I have a six year old son who, when he is well is funny bright and caring. However when he is ill he morphs into a different child. Each time this odd behaviour has started it has been closely followed by infections such as urinary ear throat and chest. It has got to the point where I am presenting at my gp saying his behaviour is horrendous can you check for infection (he doesn't display any other symptoms other than loss of appetite).... They roll their eyes at me... Yet low and behold he has an infection each time!!. The infections are becoming more frequent for example in the last 5 weeks he has had two urinary infections an ear infection and a throat infection. Each time the behaviour lasts longer and each time I am told this is normal??. When I say behaviour this is what he does... First his attitude changes he speaks in a different tone of voice his facial expressions are different, he has uncontrollable violent rages he will attack me swear destroy the house run away hit himself for no reason whatsoever this lasts for hours a few times a day... He weys himself day and night... He is obsessed with dying says he wants to die or wants me to die he says strange things. He does not sleep through the night and is constantly wanting to be in my bed ... I am exhausted/ he is exhausted and this condition is the only thing I have found that describes how he is being.... Do you agree??? What can I do??? So sorry for the long rant but I am desperate...nwe have a paediatrics appointment on Thursday band am wondering if I should mention this or if I am far off the mark???

    Thanks

    A desperate mummy

    • Philipa
      Philipa jenbee136

      Posted

      That sounds so like my daughter.  Diagnosed with PANS.
  • Pandas_Ireland
    Pandas_Ireland L_Haven

    Posted

    Hi all, I've organised a PANDAS Awareness Conference which will take place in Dublin, Ireland on 22nd October 2014 with key speakers, Pandas Specialists Dr Trifiletti, Dr Latimer and author Beth Alison Maloney.

    I decided that the best way to get treatment for my son with PANDAS is to create awareness of the disorder in Ireland with both doctors and parents. Registration is open now, go to http://pandasireland.ie/conference - everyone is welcome. You can also check out PANDAS Ireland on Facebook. 

    Thanks, Karen

    • Emis_Moderator
      Emis_Moderator Pandas_Ireland

      Posted

      Hi Karen,

      You could also post about the conference directly onto our Facebook page wall http://www.facebook.com/patientuk and if you use Twitter, you can tweet details to us https://twitter.com/patientuk (use tag @patientuk) and we can retweet your message.

      I hope this helps but if you want any further info or have questions send me a private message by clicking the envelope icon under my username to the left.

      Regards,

      Alan

      Emis Moderator

    • Pandas_Ireland
      Pandas_Ireland Emis_Moderator

      Posted

      Wow Alan, that's great. I will look at this now and definitely follow up with tweets and our story. The more awareness the better! When I was first faced with our son's PANDAS diagnosis in January, I googled it and ended up here. It was a great help to be able to relate to the other stories and I met two mums here who I have been in contact with since.

      Thanks so much for seeing this and taking an interest. 

      Karen

      Facebook:https://www.facebook.com/PandasIreland

      Twitter: https://twitter.com/PandasIRL

      Website: www.pandasireland.ie

  • natasha45646
    natasha45646 L_Haven

    Posted

    I have a 13 year old daughter, a year ago she had servers bacterial tonsillitis and had similar symptoms a few weeks ago, in the last week she has developed a constant eye rolling tic which she can't control.....we have seen 6 different docs and none have any answers...it is taking over her life and we need help but no one seems able to help us or offer any answers...its at the stage where she has been rolling around the floor wanting to pull her own eyes out to stop this tic! Medway hospital in kent seem unable to offer any answers....I just want to help her but feel like everything we say to our doctors fall on deaf ears......can anybody help please? We are desperate 
  • muffin1978
    muffin1978 L_Haven

    Posted

    Hi, I was wondering if you could send me the name of the peadiatric consultant you saw at Derriford? I am struggling to get any GP's or consultants to consider PANDAS or even tak my daughters condition seriously. We are in Bristol so either Exeter or Plymouth are easy to get to and I should be able to get a referral if I have a name.  I hope that your son is doing ok.

    Best regards 

    Nicky

     

    • traerich
      traerich muffin1978

      Posted

      Hi, we are seeing Dr Ben Marsh. The original Dr detailed in my post a number of years ago - sorry can't remember her name other than Rachel something - went to Exeter I believe. Hope this helps you get to see someone with experience of PANDAS? 
  • tina4564
    tina4564 L_Haven

    Posted

    Hi I have just found this site whilst desperately searching for information on PANDAS......my 10yr old dd has been having issues for 5 years now and her paediatrician has just muted that PANDAS might be what's going on with her.

    I was wondering whether anyone knows of a specialist in the condition in the uk? Our paediatrician has never diagnosed it before and is willing to refer on if necessary.

    It was such a relief to know we are not alone with all of this

  • lou94346
    lou94346 L_Haven

    Posted

    Hi Tina, 

    This is something we are looking into with our son he is 11years. I have just managed to get my doctor to refer us to see a doctor at our local hospital that has some knowlege about PANDAS. My own doctor had never heard of it. I have found alot of help through a facebook page I will give you the link. There are people on there who may be able to tell u where is best to go.

    What are your daughter symptoms? My sons have been going on for 4 years.

    I 've been looking into what can help him for so long now. Anyway hope this FB page helps you.

    https://www.facebook.com/groups/199211800204411/653661028092817/?ref=notif¬if_t=group_activity

    • tina4564
      tina4564 lou94346

      Posted

      Hi Lou

      thanks for your reply. My daughter is just 10 yrs old and has been experiencing a melting pot of issues since she was 4yrs old when she almost died from toxic shock septicaemia and kidney failure with possible Kawasaki disease thrown in! The only thing she tested positive for at the time was Strep A throat infection.

      Since then she has suffered with a multitude of conditions including swollen joints, extreme seperation anxiety, huge phobias, OCD like symptoms (piano movements, sporadic singing in a paniced fashion etc) She has recently started hearing voices and is clearly terrified by them!!! Until now she has coped well with school and is a high achiever but now it's affecting school as well.

      Where are you based? We are in Lancashire. It;s just good to know that we are not alone with this although I would not wish this on any child it is great to be able to share the load.

      Tina

  • lilly64
    lilly64 L_Haven

    Posted

    Hi There All - 

    I am from the US and googled the PANDAS issue because I believe my 10 year old daughter has had a relapse.  I am so sorry to read all of your stories; God knows what I went through when she had tics a few years ago!  We also went through so many medications, told she was having seizures (I think the neurologist first treating her go this MD in a gumball machine!!), MRIS's brain wave tests, and so on.

    We finally went down to Children's Hospital in Chicago - Lurie Children's Hospital - where she was in fact diagnosed with PANDAS.  The neurologist there knew all about it and that she must have had a strep infection to bring it on.  Yes, in fact, she did have a sore throat months before that, but I never had her tested because it was not that bad of a sore throat.  However, it must have been strep.  She was then on antibiotics for something else before the PANDAS kicked in; hence, it got rid of the strep.

    She had the tics for about seven months, she was out of school because of it so she had a tutor, and the poor kids went through heck, as did we!  I thought she was going to pull her neck right off her spine!  However, her school was absolutely wonderful and worked around our events, even though they did not quite understand what was going on.

    Now - the reason that I am here again and why I googled this again:  I believe she has had a reoccurance starting yesterday.  It is not tics but rather this constant clearing of her throat; it is driving her nuts!  She had pneumonia around the beginning of April and then had a relapse several weeks ago.  She just went back to school this past week (she did go back to school for one week after the first bout of it but then relapsed) .  But her immunity is way down, and given what I have just read here about the contact with a strep-infected person, I believe that is what has happened.  I am "happy" to see this forum and will definitely look up the white paper regarding the contact of strep related to PANDAS.  

    As I said, the doctors at Children's in Chicago was fantastic and very in touch with this disease so if any of you who are still struggling can make it to the States, go to Chicago.  However, there is no cure and it does run its course, as we were told.  And it did; she stopped the tics as fast as she started them.  

    But I am very curious about the penicillian that is prescribed to stop the habits because I will definitely print this out and take it to her doctor on Monday.  If that will stop her actions of throat clearing until her body rids itself of the PANDAS, then that would be a great help.

    I hope that someone is still checking this site every now and then because I could use someone to chat with... Thanks...

    • lilly64
      lilly64

      Posted

      It's me responding to my own post.  I am so sorry that my post has SO many typos; I wrote it at the end of the day; my vision and writing get very "lazy" due to my own health issues.  I cringe when I read it, so I am sorry. But I think you all get the idea of the post.

      Carry on... smile

    • lovelyjonesy
      lovelyjonesy lilly64

      Posted

      Hello Lilly, if you are on Facebook there are many US and good UK groups where us mums talk and communicate about our children's needs whilst on this PANDAS journey.

  • shannon80187
    shannon80187 L_Haven

    Posted

    I have two kids with PANDAS. 17 and 15. It had been quite a journey. I wish I'd found this years ago!
    • tina4564
      tina4564 shannon80187

      Posted

      My heart goes out to you I can't imagine what its like with two of your children suffering the hell that is PANDAS!

      How young were your children when they were diagnosed? I am still fighting for a definitive diagnosis of PANDAS some doctors agree with the idea but others don't believe it exists!!!!!

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