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
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
kerry thankyou so much, i will get on to this right away xxxx
sorry kerry, did you see them private or nhs x
It was on the NHS x
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
That sounds so like my daughter. Diagnosed with PANS.
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
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
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
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.
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.
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
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
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!
Thanks lovelyjonesy
Dr T is doing consultations the day before and after the conference in Ireland.
You mentioned that consultations were being held the day before and after the conference, do these need to be booked?
Kind Regards
Yes consultations need to be booked. I am not doing this but if you message me I'll forward you on the details of who to contact for this.
Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service .
http://patient.uservoice.com/knowledgebase/articles/398331-private-messages
HI
i have a 5 year old son who was stricken with w PANDAS . i am unable to find the text that says that even peripheral contact with a strep b infection say in a classroom or social setting can trigger P.A.N.D.A.S. kids symptoms. can you help me ? my son has gone back to school with great difficulty and i am wondering that eventhough he is on a prophylactic antibiotic after being diagnosed with post strep reactive arthritis he was exposed to the virus at school whci has worsened his condition with anxiety tremendously. any guidance would help!
thanks!
GOOD LUCK TO YOU! I AM GOING THRU THE SAME THING WITH MY 5 YR OLD SON IN THE USA. NO ONE REALLY HAS ANY TRUE HELPFUL ANSWERS FOR US. SCHOOL HAS BEEN AWFUL
(EVEN IF I GET HIM TO GO WHICH IS RARE) .....ITS THE ANXIETY THAT IS THE HARDEST PART OF THIS