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I've read that having your tonsils out can improve pandas! Will it help them to sleep! After twenty years of not routinely performing tonsillectomies, doctors began to find that children with chronically infected tonsils had some recurring problems. The tonsils' impact on breathing was especially interesting. Some studies looked at how children who snored were often classed as having behavioral problems in school or considered ADHD. When tonsils were removed, these children generally slept better and many of them behaved better in school and were clearly not ADHD. These studies suggested that by not performing tonsillectomies, doctors were actually doing a disservice to some children, who truly would benefit from the procedure. Tonsillectomies have become a more acceptable procedure, especially for those children with chronically enlarged tonsils. In most cases, removal of tonsils benefit the health of children instead of making them more susceptible to illness. This suggests that some children really don’t need tonsils, and that they are perhaps a “leftover” evolutionary enhancement that is not practical to modern day. Children with tonsillectomies generally have fewer instead of more illnesses. Chronic tonsil infection (tonsillitis) might actually weaken the body, making children predisposed to getting more illnesses. For other people with tonsils, they may not pose any problem. If tonsils don’t get infected frequently, they may perhaps provide a little immunity boost in fighting off illnesses. This is actually not proven, since many other areas of the body also create lymphocytes to fight infection. From years of studying tonsils, most doctors conclude that they may be beneficial to some and detrimental to others. Therefore, we may not all need tonsils. MOM2PANDAS who stole your tonsils- send them here

My father is going through all his medical history because he has started to collect autoimmune conditions like its a new hobby from the age of 60. He was a very healthy child, but from the age of 4 he started with chronic strep throat infections and ended up in hospital with them. his medical record states that he had a severe reaction to strep throat! No more information was written down, but he's going to ask older brother what the reaction was (he has no memory) Tonsils removed at 7 and no other problems after that. Do you think he could of been a PANDA?

The PTSD was mentioned to me by a very good Dr who said many other Drs just see the clinical health side and don't look at the child as a whole. She told me to think of how I would feel after going through this neuro attack and think how much it would affect me. I sometimes forget that even though my dd is only 7 she knows that she's going through a very scary moment in her life that she cannot control. I try to put myself in her shoes and I if I went through this I would be in a shocked state too. The medical tests for PANDAS should come as a package with support for the family but more importantly stress support for the child. Do you have any help or support for her?

Hi, I have just been gathering "strep" history information from family this morning. We noticed that a high percentage of our family have had recurrent throat/strep issues. Also, lots of our clan had their tonsils removed as children. Dh has suffered with bouts of glandular fever during his life, and I suffered with recurring sore throat as a child and often get a mild sore throat when dd has strep. Do any other parents have a strong history of Strep issues/tonsil connected infections. Thanks Jules

Hi kcdc3, I see the same thing with dd and it starts just before infection and can go on for up to 2 months. She reverts back to a toddler, and I follow her around restoring the hurricane that she leaves behind. Is there anyway that your dd could have a second infection that has not been tested for and it's lingering around. Also, read up on PTSD, as this can leave you in a "don't care" attitude. I think these poor children are way overstressed with what they have to live with, it must affect them deeply. And, is this a change in her that you have not seen in the past before she became ill?

I would love to know how teachers and Drs describe a pandas child if they could see both sets of circumstances. Dds teacher knows when she is about to have an onset by her math and writing changes. She also noted a marked difference in personality and attitude. Both my children are a mixture of ecto and meso - average in school but great thinkers.

Too late at night for me reactive, can you explain those to me (should be doing the ironing - but this is far more interesting)

I wanted a stinky horrible name for this stinky horrible condition. But, does it mean something bad in US! I think its a small gathering of isolated genes and depending on enviroment/gut health and other insults that happen, I think it will express itself in various levels. I do see a positive link to anglo-saxons.

The poll is looking very 50/50 regarding the onset of whatever we call it now...... "PANDYPITS". My personal thoughts are that parents see an onset the most with Strep, because this is the most common infection that a child would come into contact with the most. Not a nurse, DR etc but I would love a more educated view on that. So that leaves me to think.....the child is born with the "missing ? gene" Could it be a prior virus/bacteria when very young (virus seems my favourite - flu or chicken pox) that sets the autoimmune trigger in motion then the next infection that a child contracts be it strep, which they would have more chance of catching or another colony type infection that activates the autoantibody symptoms. Which would make it a 100% genetic autoimmune condition. And then that would stop the grey area for the many Drs that find all this confusing. And the parents who think their children can catch it from ours! All thoughts gratefully received

Black is mine! Shoes,cars,pepper, and the bit that I get when I sleep. Also love everything that is red apart from the sight of blood. Jules

Ignore all the spellig gramir mistakes - one is working tooo hard!

Just another interesting point that Fixit put into my head. This is our rate of TS More than 300,000 people in the UK have TS, including one schoolchild in 100. However, we have no data on PANDAS, and I am really finding it hard to complete the data on ASD reported cases as they are combining them with all sorts of other conditions that I'm not looking at. Jules

Hi Fixit, So when are you going to post us a PANDAS Dr. Anyone will do! That is a really good question that you asked about TS rates in the UK - Going to ring TSA here and find out. Our Drs here are so polite that they apologise before they take a blood test. We do have a wonderful Health Care System that is free and open to everyone (paid by all taxpayers), so all have treatment regardless of financial status. However it is "cost effective" managed and any expensive treaments like IVIG are very limited. It can also be very slow. Anything that is an Alternative Approach (TS/PANDAS/ASD) to treatment is also quite frowned upon. That is why the Brits" are finding this forum a breath of fresh air. They do like to medicate us! But i think it's to shut us up Take care jules

Hi Vickie, If you saw an unusual reaction after chicken pox, ie, speech decline, motor skills change that was noted after then I would put the CP down as your first noticed event. I'm quite new to the poll thing, but very interested to see if anyone noticed a change in development of child prior to a Strep Infection. jules

Thankyou all for your imput. I am in no way trying to be contentious in the regards to vaccines. However due to my unique family history, I am looking at a genetic link. I would like you to think back to toddler days when filling in the poll. If you can remember times that you thought - thats not right - you may of had, but then it resolved. Not tantrums etc, but something that you just could not make sense of. I feel that a united parents imput can really help those Drs that want to know, and maybe that link will find a positive result. Many thanks Jules

Thankyou all for taking the time to fill in this poll. Jules

Thankyou everyone for taking the time to fill this in. Jules

Has anybody read or come across Asian families (with no Anlgo links) that have PANDAS cases. Thanks for any info. Jules And I shouldn't call myself a mutt, as in the Uk it means something nasty....I'm a mongrel now!

Not trying to argue but i totally disagree.. My son would be tic free..... I would see a tic start,, get swabbed, pos on strep, get antibiotics and tics are GONE!! For us Tics would completeley remit after by 4th week post biotics..... I'd get oppostional behavior and walking on eggshells but that could be because they are sick... IE the sneezing girl( it is just one repetative tic) doesn't have strep, i believe she has Mycoplasma pneumoinae.. For us with this last onset ,,,,we saw a doc the day before his tics started...he said he didn't feel good, and everything from the neck up was red, swollen, fluids, shiners, slight conjestion doc said, neg on quick test...Woke up the next day a ticker.....i just think it is so odd we saw a doc the day before????? Still persuing other illnesses. From my experience,I'm saying strep makes you just tic. Pandas/pitands is not just strep. Maybe check out some of Dr T's thoughts/threads He has come up with a couple new accronyms, cute. Unless you are saying rule out as in, persue it till you can com;etely eliminated it as an option...that i would agree too....but now there are whole list of illnesses and i bet more to come,,,check herpes, lymes, epsteins, pyloria, ceilicas, mycoplasma pneumoniae to start, and you may want to check the pandas board on occasion. Besides the helpfull info over here! Hi Fixit, Bev and I live in the UK and our health service has a very different view on treating children who present with symptoms of tics. It's a gentle approach of monitoring for 12 months to rule out very common transient tics and for a dx of TS. Very few have heard of pandas/pitands. If we went to the drs asking for all these tests, they would think that we were "raving mad moms"! To see a specialist can take along time, and they would often want to know on what grounds you think that your child needs the tests for. The Drs here do not like to do invasive tests on children if they see no reason to do so. I believe as bev is new to this journey she now has to gather the evidence just in case it is pandas, and then have a justified reason to approach the gp to see a specialist. I don't think that it would be fair to say that abx can stop tics dead. If...it is pandas then I was trying to give a balanced view of the fact you need to find the right abx that your child responds to, and to remember even though our childrens tics cease on abx some pandas children only improve. If your child has a strep throat infection here, then you will only get a prescripton for a 5 day course of abx. Some of the pandas children are only showing improvements at around this stage of treatment. I was trying to give basic advice about the onset that most see with this condition, and also what our Drs would ask too. As her child is only having the tic symptoms then a gentle, balanced start maybe the most positive way to go. In fact in this country it's required. Our case was different, my dd would explode into a different child a few days into an infection, and our dr could see a clear unusual pattern, he was aware of pandas and we were lucky to have one of the few that do know of this condition. If however, a noticed change is seen with the onset of infection of any kind, then it is the right time to follow the evidence/specialist road. I have seen quite a few children with transient tics that often start with a change in lifestyle, like starting high school. These childrens tics settle when their stress levels lower. This is what the Uk drs will be looking for. If changes are noticed with a trial of abx (or even different abx) and a noted improvement in the 5 days, then it is time to take the next steps of reading up on the causes. A positive dx needs to have positive results to back it up. I was just advising bev to take the first steps and keep an open mind while doing so, unless she is blessed to find that one rare Dr that will listen and try abx/steroid just in case it could be autoimmune related. It's a beautiful country that we live in, but we are wrapped up in red tape with a bow on top PS.... Plan two, you could send one of the PANDAS Drs over as we are in very short supply

I fully agree with the live vaccine being a trigger too. Would also like to mention that last year dd had an overnight onset of tics on the fourth day of a high fever. The hospital did the usual pandas swabs and couldn't find anything. By chance the dr did a urine culture even though she was not complaining of pain, or smelly urine etc. She was however having sensitive bladder issues and went to the toilet every 10 mins., which we have seen in the past with no urine infection. The culture came back with a nasty infection in her bladder and kidney. I never thought to check her urine. What we need is a form with a full checklist of tests that can find those bugs that hide very well! It seems that after the first attack, many childrens bodies see every germ and virus as a trigger to go into an autoimmune mode.

Thankyou Vickie for that poll link. That has opened up another question, but I need to get my studies out to list the places were the English settled. Just to let you know that I am a mutt! Father 100% pure Anlgo-saxon Mother 50% spanish 50% Italian DD is a very beautiful combination of English Rose, Italian beauty and Spanish senora. The European link is not a surprise, as many English settled there.

Just a theory, Could I ask you all if anyone who's looked back into their heritage found ancestors that are anglo-saxon. I am very interested to know if they came from the Northern part of England. If we have lots, then I will start a poll Many thanks Jules PS I'm not looking for long lost family members but a genetic link. I won't be landing on your porch with a suitcase!

I just remembered something that is really important. Every pandas child has positive or negative result on the Abx that show a clear improvement of symptoms. If you have to revisit the abx route with another infection and you did not notice a difference on one type of abx then it would be worthwhile asking for another abx that is on the "positive result" list. But please keep an open mind, most of the children with pandas have a clear regression with behaviour. Our dd who is 7 now will regress to the age of about 3. She talks in a baby way and becomes very very clingy. From reading all the posts, (pandas/ts) I would say that most parents have a very clear change in their children of onset of infection/virus. With pandas however it is like having two different children living in one body. Hope this helps.

Thats fantastic news, thanks Marilina. Thankyou dut for the contact

Hi bev, The strep swab will take about a week to get the results back. But remember to keep ringing the surgery for the results if you have a surgery like ours that sits on them for a while. If you notice an increase in tics with a strep infection then it may be a good idea to rule out PANDAS as a possible cause. But as Cheri said tics can increase when a child is not well either so it is important not to focus on just one reason. You have to look for all the triggers. A pure organic diet is the best way to go forward for every child, this is a positive step. Its hard work but our house is more toxic free now, and this benefits everyone. You don't need to give a reason for the strep test to the Dr. apart from that your son is suffering with a very persistant sore throat and you feel this may be a throat infection starting, and due to his health you need to catch things early. Try and speak to an understanding diabetic nurse if possible in the clinic. Ask for them to do a longer swab just in case it may just be the start of an infection. The red tape is very hard to get around but I have realised you can get past it slowly. I would not even mention PANDAS to your Health centre at all. You are looking for triggers at this time and they will not even know what you are talking about. If it does come back as a strep infection then ask for the abx that the pandas children use (I will pm you a list just in case) If you see after a few days an improvement then maybe you should look at this condition as a possible trigger. But please remember that tics wax and wane so you will have to revisit the abx route again on the next infection to see a clear pattern. My personal experience with dd showed a marked improvement in symptoms when give a steroid burst, and also when I give her Neurofen. Maybe you could try neurofen if he is allowed to take it, and monitor the changes if you see any, If it is strep then to get the expensive abx can be tricky. We only got them by saying that dds past experience proved other abx did not touch the infection. You are allowed if refused a certain abx to ask for a private prescription also. We have, but then the doc surrendered and gave up and we got what we wanted. I have a very cheeky charming hubby! Let me know if you need any help with the pandas/uk bit, but still keep an open mind and carry on looking for those other triggers. I know that you are a really positive mum, and that is the number one most important quality you can have that will help your child. Keep asking for all you advice that you need. I have found coming here you get lots of support and lots of ears that listen. take care Jules