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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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  • BeaE
    BeaE

    Posted

    Just to let people know some more UK PANDAS support groups. Suzanne Ayres who has a child with PANDAS is coordinating a UK support group. You can contact her at her uk yahoo email address with a dot between her first and last name. She will send you lots of information. She has been to US PANDAS conferences so is really up to date. She has recently recommended Dr Goyal in London who she is using privately.

    There is a UK facebook group

    www.facebook.com/groups/199211800204411/

    and a US one

    www.facebook.com/groups/PANDASParentsGroup/ which will give you lots of support and advice.

    Beth

  • lovelyjonesy
    lovelyjonesy

    Posted

    Hello, I have recently joined this PANDAS support group and its been very helpful and supportive. I would recommend any parent going through this awful situation to join. I'd like to know why there isn't more in the press about this condition? Why are we suffering in silence? Hope your child is getting better and getting the treatment they need.
    • vicki56072
      vicki56072 lovelyjonesy

      Posted

      desperate to know where i ca go to see if my 11 year old son with autism has pandas aswell, sore throat followed by ticks and choriform movements, digging at his skin behaviours off the wall, so clingy  etc etc desperate x
  • Sunshinemum
    Sunshinemum

    Posted

    My 5 year old just diagnosed on Saturday with pandas post strep infection and extreme change in behaviour Particularly interested in talking directly to Fran 25 as we are also in Ireland. GP had never heard of this. Thankfully registrar in hospital A&E had so we have a diagnosis but don't know where to go from here. He is currently on penicillin. We are feeling very lost and isolated.

    Many thanks

  • Pandas_Ireland
    Pandas_Ireland

    Posted

    Hi sunshine mum, 4 year just considered a "convincing argument for a PANDAS diagnosis" by Neurologist in Dublin. No treatment given yet. Has been going on for over a year. GP also has never heard if it. Trying to track down any support/doctors who have treated in Ireland to no avail so far. Would be interested in sharing story. Living with constant butterflies in my tummy... So can't imagine how my 4 year old feels!
  • Sunshinemum
    Sunshinemum

    Posted

    Hi PandasinIreland have sent you a Pm in reply to your pm and would be v interested in sharing story.

    Many thanks

    Sunshinemum

  • kerry40680
    kerry40680

    Posted

    Hello, 3 weeks ago my 6 year old daughter got poorly with throat infection and on the very same day she started ticcing just like some body had pressed a switch and the tics began. Doctor have her 1 week of antibiotics for throat but I didn't mention the tics because I thought it re something and nothing....how wrong was I ! They just got worse and worse and now 3 weeks later she had about 6 different tics that never stop plus a vocal tic that pops up now and then...I did a lot of research and came across pandas...couldn't believe what I was reading so I took her the GP yesterday who sent us straight to pediatrics, they agreed it must be pandas and that it would be treated like any other tics. We have appoitment with neurologist in 2 weeks but after more researching I am wondering if she should be taking antibiotics now still ? even 3 weeks after infection? Does as anybody know do antibiotics help with the tics ? Also I read maybe ibuprofen may help ? I'm going to start giving her ibuprofen tomorrow it's worth a go.
  • sarah77049
    sarah77049

    Posted

    Hi Kerrie40680. We are in a very similar situation as you. We saw our GP on Monday and saw a paediatric consultant on Wednesday. He agreed there is a possibility of pandas. He was most concerned as our daughter, she is 6 too, is having very aggressive arm and leg tics as well. Her whole body jerks at times. She also has facial and noises. She is having a blood test Tuesday and we are waiting for an EEG appointment. Our poor little girl is exhausted and now getting very sad about having the tics. How can we explain or give hope when we don't know what the future holds.

    I also wonder if she should be on antibiotic still. She was on them for one week and the tics started after that.

    Have you tried using ibuprofen and has it helped? x

    • kerry40680
      kerry40680 sarah77049

      Posted

      Hi sorry I've taken so long to reply just life's been busy....I hope you have found some help for your little girl by now ? I know it's soooooo worrying and consumes your life's...it seems that every child is different and not many doctors know of Pandas so it's all on the parents to get the right help.  Luckily my daughter got better, it all just cleared up thank god, she was suffering for about 4 months and the neurologist assured us that he has seen pandas lots of times before and majority of children it passes after bout 12 months so guess my daughter was really lucky. She additional has some little habbits now but that small nobody would notice except me.  I still don't know what will happen nex t time she gets poorly so we just wait and see. I do hope your daughter has some relief by now. I know it's useless info for you this long down the line but ibuprofen did not help my daughter but she did get antibiotics as soon as she was poorly and about 4 different types after that ( which I had to stalk the doctor for )  maybe they helped maybe not ? I do wonder though if I didn't take her docs soon as she was poorly and got antibiotics for her that maybe her case would have been worse?  I have been advised to get antibiotics for her in future at first signs of even a sore throat. Again I hope things are looking up for your little girl I know how hard it is for her and yourself x
    • san95828
      san95828 kerry40680

      Posted

      How is your daughter doing now with her tics? I have my 5 yr old who had strep infection treated with antibiotics but started ticing while she was on Antibiotics. She has episodes of tics (facial,Vocal,Motor) but Neuro is saying it must be a tic disorder since her followup throat cultures came back negative for strep. Pls share yours.
  • happy_days
    happy_days L_Haven

    Posted

    Hi  there, i thought i'd reply to your post although it looks like it might be a year old as yr child is same age as mine and i wondered how yours is coping now compared to when you first posted your comments.  My son is nearly 12 actually but although he has aspergers, he was perfectly ok until suddenly he developed some tics etc approx 4-6 weeks ago which we put down to exams time...he is developing more and more worrying behaviour .  We're at our wit's end. 
  • vicki56072
    vicki56072 L_Haven

    Posted

    hi, can you tell me where you went to get your childs diagnosis as am struggling to find someone x
    • happy_days
      happy_days vicki56072

      Posted

      Hi Vicki56072,  i haven't found anywhere yet either but have a thorough search and keep plugging away - judging by this forum alone, people do seem to get through the system somehow!  

      Good luck and keep going!

      Happy Days

    • kerry40680
      kerry40680 vicki56072

      Posted

      Hi Vicki, my daughter had pandas confirmed by the paediatrics at glan Clwyd north Wales  and neurologist from Alder hey...they never doubted it was pandas. 
    • vicki56072
      vicki56072 kerry40680

      Posted

      hi kerry40680 , thankyou for this, do you have a phone no for either, massive thankyou again x
    • vicki56072
      vicki56072 kerry40680

      Posted

      hi kerry sorry, would you have the names of neurologist and paed, this is the 1st bit of light ive had so grateful xxx
    • vicki56072
      vicki56072 kerry40680

      Posted

      dont know if you got message, but can you give me names please, new to this site, and dont really understand it as yet x
    • kerry40680
      kerry40680 vicki56072

      Posted

      Hi Vicki, the paed we saw is Dr Cameron at Glan Clwyd hospital he didn't know great deal but he agreed about Pandas,  but as you probably know by now there isn't a clinical diagnosis it just goes by the facts, then we saw Neurologist Dr A Curran he came from Alder Hey, he did know about Pandas and reassured me that it usually passes by 12 months ....I didn't believe him at time but he was right as my daughter is now back to herself thank god. I hope this helps you, I've just been reading the diary I kept at the time my girl had pandas and got tear in my eyes and goose bumps to remember how scared I was for her....frightening....hope things look up for you too xx
    • vicki56072
      vicki56072 kerry40680

      Posted

      kerry thankyou so much, i will get on to this right away xxxx

       

    • san95828
      san95828 kerry40680

      Posted

      Hello Kerry,

      Could you please share your story - What symptoms that your girl went thru?

      I am glad she is back normal...

      I am also going thru the same boat wishing my lil one back to normal like who she was with no tics.

    • kerry40680
      kerry40680 san95828

      Posted

      Hi , my daughter started tics the day she got tonsilitis and it didn't stop for months... constant all day,( even in her sleep few times ) she was doing movement tics like really noticeable putting her tthumbs up all the time was just one of them there were a lot, she didn't stop nodding for 2 wks also noises high pitch noises from her throat it was awful plus she seemed  to change  slightly in her personality not drastically but I and my mother noticed. We saw a   neurologist and he reassured us it's.not as uncommon as we thought and that most children do recover within 12 months...I thought I was being fobbed off but anyways she got better and back to herself quickly and everything settled down and we forgot all about it then a few months later in August she suddenly started again but without illness yet she has a lot of congestion also keeps getting little sores on her eye don't know if this connected or a cause of the tics but this time it's just mild tics like the winking and looking to the side ... Not that noticeable to the other children thank God and not 24/7 as it was b4 so it doesn't worry me that much...doesn't affect her school life so I've decided to not take her back to the doctors because she found all the appointments and everything scary and so I'm just going to leave her be and hopefully will settle down again... Ill stop rambling on now lol ....I really hope your little girl recovers I know how worrying it is  xx
    • Pandas_Ireland
      Pandas_Ireland kerry40680

      Posted

      Hi Kerry, We have been dealing with ours son's tics, fears and tears that have come and gone (rarely completely gone) over the past two years. It's been the scariest time of my life.

      In January, my son was eventually diagnosed with PANDAS but given the lack of awareness of this disorder treatment unfortunately didn't follow. I brought my son to a specialist in the US, Dr Trifiletti and asked that doctor to come to Ireland to create awareness. Beth Alison Maloney, US author of Saving Sammy also agreed to come so I asked a few more doctors and found myself organising a PANDAS Awareness Conference in Ireland on Wednesday, 22nd October 2014 in The Convention Centre Dublin.

      I have had interest from the UK with 23 parents travelling over for this event. Speakers include Pandas Specialists Dr Rosario Trifiletti, Dr Finn Somnier, Dr Cathy Nicolaides who was instrumental in saving Sammy, author Beth Alison Maloney and Irish Paediatric Neurologist Dr Niamh Lynch. 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. And I feel very strongly about getting awareness out there so that other parents don't have to go through the same thing.

      If you're interested you can register for the conference online, http://pandasireland.ie/conference - everyone is welcome. You can also check out PANDAS Ireland on Facebook. 

      Thanks, Karen

    • lovelyjonesy
      lovelyjonesy Pandas_Ireland

      Posted

      Thanks to Karen this Conference has been organised.  We are a family in England with my 15 year old having PANDAS and has since he was 5 years old but only diagnosed when he was 12. We have to raise more awareness in this country. We too have had such a battle. We tried to take my son to see Dr T last year at the Boston conference but had to disembark the plane as my son was highly anxious and we couldn't calm him down. I wish you strength and determination as it's certainly a journey! 
    • Pandas_Ireland
      Pandas_Ireland lovelyjonesy

      Posted

      Thanks lovelyjonesy

      Dr T is doing consultations the day before and after the conference in Ireland.

    • n34655
      n34655 Pandas_Ireland

      Posted

      You mentioned that consultations were being held the day before and after the conference, do these need to be booked?

      Kind Regards

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