Parents of children diagnosed with PANDAS

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

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.

Tracey

Hi Phillipa

My son was diagnosed with Tourettes Syndrome 3 years ago now, the neurologist wouldnt give a PANDAS diagnoses although she more or less admitted it could be PANDAS, it was agreed my son take daily anti-biotics which he did for over 1 year. Her point was that whether it was PANDAS or Tourettes the symptoms and treatment would be the same.

I understand this is a very difficult time for you and your family and watching your child displaying these symptoms is very upsetting. I can only say that in time it does get easier, the tics naturally wax and wane as do the other symptoms. I found a great deal of support through the pandasnetwork that Tracey mentioned above. Now we cope with everything, my son manages his condition and when he is going through a bad spell we just have to support him as much as we can.

There is no magic wand unfortunately and if there is any other information I can give you please ask.

There is an interesting documentary on channel 4 this Thursday evening "The town that caught tourettes." I have been doing some research about this programme and there are indications that the 12 kids with tics may have PANDAS. It may be worth watching.

Take care

Lou

Hi there

I would really urge anyone to look into homeopathy. My daughter, aged 6, has had PANDAS for the last two years and has spent a lot of that on full course or prophylactic antibiotics as we were so desperate. When it got to the point recently that any cold would trigger off the symptoms, we decided that we would take her off the antibiotics as I was concerned they were doing more harm than good and was suffering from tummy aches and eczema. I was pretty sure that she had a yeast infection (probably caused by the antibiotics) so put her on a low sugar and yeast diet, continued with probiotic tablets and have put her wholly in the hands of the homeopath. I did this having done lots of research on the internet (the only place it seems you can get advice and support on PANDAS). If you google homeopathy pandas you will read many promising stories. I am amazed at the difference already. She has never been so well but really time will tell whether it really is working. All I can say is that the future on antibiotics felt bleak as she was reacting to infections that they couldn't stop whereas I now feel really hopeful that the homeopathic treatment may keep her on an evenish keel. I am in Bristol. I will see how things go over the next 6 months/year and will certainly be recommending the homeopath I see to other PANDAS sufferers if things continue as they are as she will hopefully have built up quite a lot of knowledge of the PANDAS illness.

Take care

Bea