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.
Hello L Haven,
We have a PANDAS/PITANDS daughter who has just turned 7. At present we cannot find the right medical care for her and it is becoming a nightmare.
At the moment she is off school again, we have tic symptoms, sleeping problems, regression, tears and tantrums, to name but a few issues. She has just had a throat swab for strep, but we think it is viral this time. Our ped. will only treat with SSRIs which we have refused. Have you looked into long term antibiotics and IVIG for your child, and what symptoms do you see? We are feeling very alone with this condition, and are fighting with doctors for help.
I would not wish this on any child, but it was very nice to find another parent who we can relate to. Hope that your little one is well.
Regards Julie and Steve
my little boy has been diagnosed with tourettes syndrome, i suspect it may be PANDAS but am finding it impossible to speak with any medical professional who even knows what it is!!
has anybody had any joy getting their child treated in the UK?
any help or advice would be most welcome.
Lou
Lou,
I have sent you a pm, we also have a PANDAS child. I would very much like to get in contact as we are at last being treated with some positive results.
Jules
Oops. Just started new thread by mistake. :oops:
This is what I was trying to post;
Hi,
We have been struggling with this for almost a year now. It would be a big help to be able to correspond with other parents of kids with PANDAS. DS4 has just started prophylactic penicillin but otherwise no-one seems to be able to suggest much in the way of help.
DS had overnight onset of tics, separation anxiety, regressive behaviours and funny worries. He also had a proven strep infection.
Does anyone know who actually knows anything about this condition in the UK? It seems that the Drs we have encountered don't agree with the PANDAS theories.
Fi
My son was told by a paediatric Consultant that he probably has PANDAS in March this year. He is 5.
He started grunting/throat clearing, eye scrunching, nose stretching and shoulder shrugging about June last year. He had a very traumatic time last Easter so we initially put it down to that though we were worried and confused for him.
He has a high riding epiglotis which had to be investigated regarding the grunting but after that was dismissed as a cause, at last we were referred to a pediatrician in Derriford hospital in Plymouth. She listened to the symptoms even though my son was not displaying them at the time. She asked him to stand up and do some hand eye co-ordination tests and then asked him to hold his arms out in front and lift the hands up (wrists at 120degrees approx) and his fingers were flickering which is a sign of chorea (pronounced like Korea). This along with the tics and grunting and speedy onset led her to suggest he might have PANDAS. She has 3 other children under her care with the contition. 1 has had a recurrance, 2 have not. She said to take him to the GP immediately if a throat infection was suspected and get a course of penicillin.
Last week, we all went down with colds/sore throats and right on cue, Harvey's tics worsened even though he says he doesn't have a sore throat. I got some penicillin from an out of hours doctor on Good Friday and today, he is more or less tic free. I put a call in to the consultant to discuss this with her but haven't heard back yet. I am still unsure if this is what my son has as we went away for the weekend and he was extremely excited so maybe it was that. Frankly, I am just so relieved it isn't likely to be tourettes and that he seems to have a recognised condition with a treatment.
I would love to connect with any mums in a similar situation.
it is such a relief to hear that there is a UK doctor who is actually diagnosing PANDAS. our experience so far is that nobody knows enough about the condition to make a diagnosis. the paediatrician we seen just said it is all classic tourettes and that although there is a link between strep and movement disorders there is no evidence to back it up? we have been lucky to have a supportive GP who has prescribed us 250mg per day of penicillin which is keeping our sons tics to a minimum, prior to that his body was jerking all over the place. 3 days into the penicillin things turned around completely.
we are waiting to see a neurologist at yorkhill hospital in glasgow so hopefully they will be able to help. we were contemplating taking him to the US as I have been emailing a doctor over there who is a PANDAS expert. i have also been keeping in touch with other PANDAS mums in the states who have been a fantastic support. if you need more information i would recommend you google \"pandasnetwork\". Diana Pohlman runs the site, her son has PANDAS, he has had IVIG and is doing great.
please all keep in touch, we need to make people aware of this condition, there must be kids all over the place being diagnosed as having tourettes syndrome when its actually PANDAS.
Lou
Hi
i would love to be in contact with other parents who are sadly going through the same experiences as ourselves. Our now 6yrold son was diagnosed with PANDAS when he was 3. He had sudden onset severe compex motor tics and OCD(which he still has). Our GP sent him to a paed as she was concerned it was epilepsy. Numerous blood tests were taken and PANDAS diagnosed. We have been on the 250mg Penicillin since that time and there has been an improvement. We have seen a neurologist once and had a MRI done, just to rule out anything else. Our son is settled at school but has great difficulty with handwriting although his reading is good. He still has to wear a nappy at night and still manages to wet the bed every night. He has frequent joint pains. We are now concerned that he is displaying ADHD behaviour which is a new and worrying sympton.
We feel very alone, often misunderstood even within the medical profession and fearful of the future. We are reluctant to start any other medication as we are worried about the side effects.
We are more than prepared to travel anywhere to meet the right Dr who could help and advise us. Does anyone out there have any suggestions? 
Hi,
We also suspect our son has PANDAS. We live in Ireland but would travel to UK to meet a doctor who is a PANDAS expert. Would it be possible to get contact details for PANDAS doctors in the UK.
Thank You,
Fran 25
Hi Fran 25
Sorry, we never did get in touch with any PANDAS doctors in the UK. My son took penicillin for almost a year on and off and I thought that was keeping the tics away. However they seemed to just naturally wax and wean. My son had a diagnosis of Tourettes although I was convinced it was PANDAS due to the sudden onset of the complex tics.
I hope somebody else can contact you with some doctors. I didn't really have much joy with this particular site.
If there is anything else I can advise you about then please get in touch.
Best of Luck
Lou,
Thanks for your reply. Right now, we still think we are dealing with PANDAS, so would you know of any other UK sites that might be of use to us. Hope you and your son are coping ok. Its not easy when something like this hits your family.
Regards,
Frances
Hi Frances,
I'm sorry, I don't know any doctors in the UK. I wish I could help.
Like you, zaccybee, we did the antibiotics (daily 500 mg penicillin), and I don't know if it helped. We also did IVIG with no results. Our boy is now 13; we've been "in the trenches" so to speak, for 7 years: MRIs, neuropsych testing, 2 hospitalizations, and more types of medication than I can remember. We were told that the average age of onset was 6 years of age. Literally the day of his 6th birthday, PANDAS symptoms emerged full-blown.
I can offer this hope: We were also told that there is a subset of PANDAS kids who symptoms remit at age 13. When he was little, 13 seemed light-years away. Our boy is now 13. And his symptoms remitted the day before his 13th birthday.
Best wishes to all of you,
Lena
Lena,
Thanks for replying. I would love to talk to you privately and also to anyone else going through a similar situation, Very worried at the moment. If you are willing to talk, please reply and I will send you my private e-mail address.
Thanks,
Frances
Hi Frances
I would be more than willing to chat with you privately if I can help. My son has never been diagnosed with PANDAS so Lena may be able to offer you more information than me. I got a wealth of information from a tics and tourettes forum in america. the parents on that site spent hours giving me advice and information and it was an absolute life saver for me.
I will send you a pm with my email address and we can chat some more if you want. I understand what you are going through just now.
I've just realised the option for private message is gone?? or is it just me?
Thanks Lou. My e-mail address is xxx. Please send me a mail and I will get back to you Lena, if you read this too and you would be willing to talk, please e-mail me privately too.
Thanks,
Frances
Hi all,
We do not publish private email addresses on the site and the Private Messaging facility will be put live very soon.
In the meantime I will email Lou and Lena separately with Frances' email address.
Alan (aka Emis Moderator)
Hi all,
I have just mailed Frances' email address to Lou and Lena.
Alan
Hi!
I have a five year old daughter just diagnosed with PANDAS - please can you help us. We need your advice on what should be done to prevent her having the horiffic symptons we have just dealt with for the last three weeks until the antibiotics slowly seemed to return her to normal. Thank you Philipa