Parent of Child with PANDAS

Children's health
1

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.

2

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 www.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

3

Before you get to excited, a word of caution, PANDAS may seem to explain in detail the symptomology of your child’s symptoms? However, PANDAS is not recognized by the Psychiatric association, DSM-5 and/or other professional sources, for a good reason. The many diagnosis/disorders that are approved have gone through intense and rigorous research studies to prove their reliability and validity. This is not to say that PANDAS does not have some validity but until it goes through more controlled studies and is able to establish a strong correlation of its reliability and validity, it should be pursued with the utmost caution.   For one thing treating this disorder with antibiotics could cause a child in time to become immune to it? Let’s say the child comes in contact with a serious infection at some point in their life, would the needed Antibiotics do what it was designed to do? Or would it put your child at risk for further complications? These are questions that would need to be answered before this so called diagnosis of PANDAS would be accepted by all medical professionals as a means of treatment. However, this diagnosis sounds very promising and could be a valuable asset in treating this potential diagnosis. The best approach to verifying that ones child is getting the correct and/or best treatment is to advocate to researchers within the medical/psychiatric field to conduct more research studies on this potential diagnosis in an attempt to strengthen its reliability/validity.

4

You just have to be persistent. I am in the states and there is a PANDAS doc close to us. We have been to doc after doc and then some. I fought for 4 years to have my daughter's tonsils removed to stop strep bc the antibiotics weren't working. Aside from colds, she has not been sick for 6 years now. She still has complications from the strep/scarlet fever as she and my son both suffered heart and hearing complications from it in addition to the OCD. They are both on Zoloft right now and in behavioral therapy and have grown out of some of the OCD things. Not to mention the older they have gotten the easier it has been bc they understand what is going on. It is still frustrating with all their appts. It seems like we don't go more than a week without seeing some sort of doc. I have learned as exhausting as it is, you have to take a little time for yourself. Even if it is just a nap here and there. Don't let the docs push you aside. You know your child the best, so sometimes being a thorn in their side is necessary to get the docs attention. Good luck!