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.
This is what I was trying to post;
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.
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.
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 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
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,
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 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
I just thought I would post an update as I have had a few alerts regarding new posts since I wrote this.
My son is 8 now and we seem to be in a wax & wane situation regarding the severity of his tics. The Paediatric Consultant we had at Derriford left and went to Exeter hospital (I think) and a new one took over. Thankfully the new consultant is also going down the same route as his predecessor.
If you type p.a.n.d.a.s. syndrome into google ( full stops inc.), a whole lot of new research comes up
including a recent white paper (type in 'p.a.n.d.a.s. syndrome white paper) by Dr Swedo 15/02/12. There is also a site that I have used called pandasnetwork.org.
It is compelling reading suggesting 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.
My son has never had a positive throat swab and the updated research doesn't say that a daily on-going penicillin dose is as effective as I was led to believe 3 years ago.
It is positive for us all that at least research is being done and that Dr''s presumably can't go on
disregarding the condition affecting our kids. The information is invaluable for printing off and handing to Teachers, cub/beaver leaders and Dr's because it explains why our kids are the way they are sometimes.
Our new consultant said that if my son is aware of any differences, or is teased, he just has to say, ' oh, that's just a tic I have sometimes, it's just part of who I am' which is a good way of putting it into perspective. He also put in writing to my G.P. & school that my son has no more chance of stopping the grunts, blinks & twists than he could a sneeze.
One thing I have noticed as a parent is that computer games, wii games etc.. and tiredness all greatly increase the severity of the tics and they increase at the end of the day when I believe fatigue sets in.
Like most parents on here, I am hoping that at around 13, the symptoms will disappear. I have hope because I found out that my cousins son had the same symptoms which disappeared as he grew up. A child of a cousin is a pretty tenuous relationship to imply a genetic link, however it was never diagnosed in this child and the similarities are very striking. Ask around within your family to see if you also have a tenuous link.
We have learned to cope, live with and ignore the symptoms as advised by our consultant. There was a much larger increase in Jan 2012 including regression where our 7 year old went back to baby programmes, poor writing and a total inability to imagine or be inspired to think about anything not there in front of him. The worst symptoms lasted approx. 2 weeks and as school noticed, we referred once again to the consultant. The tics gradually reduced but still haven't totally gone. Stress seems to trigger increases too inc. new school year, holidays, xmas and all the excitement and the lead up to birthdays.
1st diagnosis of this condition is very hard and scary, but as parents, we have to try and deal the hand we are dealt and I promise, it does get easier. It also means that we celebrate the good days and times and tolerate the bad as best we can. I am sorry if I can't answer your questions, but I am just a mum who's son has some weird condition that not many have heard of. We do cope as I am sure all parents of kids with P.a.n.d.a..s will learn to do as best they can.
I don't want to patronise, but at least it isn't life threatening and there are kids certainly a lot worse of than ours. Please keep strong and don't take no for an answer if someone is trying to palm you off.
Kindest regards to all of you.