Missmom

Just a thought here, does your son have any contamination fears (germaphobia)? Just wondering if he gets anxious about eating or putting things in his mouth such as a toothbrush, etc..... This could cause a ramp-up of his anxiety and therefore making his tics worse. My sons tics seem to get worse when he is anxious or excited.... Especially when he has a test the next day or if we are getting ready to go to a watermark or something he is excited about? How is your sons appetite? So many eating issues can develop from pandas /pans.

Is augmentin considered a biofilm buster? Just curious, I have heard of things like mucinex being helpful in breaking through the biofilm but have never heard that augmentin could do that as well. It would kind of make sense though as to why so many of us need long term abx as opposed to the standard ten day treatment. Those biofilms may take a while to break up.

I don't know what pandas dr. You will be seeing but sounds very encouraging. It seems your dd will be getting a very thorough evaluation. You should definitely go to see this pandas doctor. Now about the psychiatrist...... If you really think it will help I would go but my guess is that they will give some anxiety disorder diagnosis and prescribe some anti-psych meds, yada, yada. I am not saying that this can't help some kids but in so many cases it does more harm than good. You will have to just use your best judgement on all of this.

Just my opinion, but if you have the appointment soon with a pandas reputable doctor, I would definitely keep the appointment and get the labs... That is as long as you have insurance or can financially afford to do this. Sometimes it takes us months to get these appointments and flair ups can happen overnight. I would at least want the baseline on labs and to be an established patient with a good doctor. Then when and if another flair up starts you can call the doctor and get in quicker. He will also have labs to compare and be more willing to start treatment right away. I would hate for you to cancel the appointment then regret it a few weeks later. It helps to make sure your child is completely hydrated and had a good meal before labs unless the doctor tells you she needs to fast. We have never been told to fast though. The Elma cream will numb the injection site if you apply it thirty mins before the blood draw and she won't feel a thing. Unfortunately bloodwork is just a necessary evil in all of this. Hope this helps you.

I don't have any personal experience with this supplement, but I have heard of others using olive leaf extract as a preventative to strep when they could not get abx. I agree with you, that the dr should not stop abx at the beginning of the school year but If they absolutely refuse, I reccomend finding another doctor fairly quickly. Try explaining that anything even a prophylactic dose would be better than nothing. That is if you can ever get in touch with them. Good luck.

My son started with just tics like that as well that would completely subside after a few weeks. Then I noticed it coincided with illness or allergy type symptoms. I also did research and noticed that he has OCD, it was manageable and not really affecting his life, but still there. OCD can take on many forms and is sometimes difficult to notice in children. We treat with antibiotics and most of his tics subside and his OCD is very manageable. By the time my son had his third major episode I had researched and done my homework. I knew which labs to request and was ready to battle with doctors. My sons third episode was the worst, started overnight about a week after an illness. He woke up one morning and could not stop nodding his head constantly. I immediately took him in and after labs it was determined he had pandas. Yes the pediatrician told me it was most likely transient tics, but that did not sit well and I knew there was more to it. I begged and pleaded for him to run the strep labs (bloodwork). The rapids came back negative. Four days later he called me back and confirmed pandas. I am not saying this applies to your son at all but if you notice the wax and wane type of symptoms you should just take note to see if it coincides with any sort of illness.

This happened to my son as a result of active viral infection. It did return to normal after about a week once the virus ran its course. Scary though I know.

Yup fevers make all symptoms disappear here as well.

I think it would depend on what state your children decide to attend college, or if the finances are there you could maybe choose a private college where restrictions may be more lenient. Before my pandas son goes to college I plan on researching all of this. I do have a medical exemption from my sons neurologist in our state for school, but not sure how that will apply for college.

My son also had sepeeration anxiety (I could not even take a bath or shower without screaming) at about the same age. He also would wake many times in the night and scream for me. Those things came and went, it would last a few nights then get a little better, etc.. The pattern continued. He was about three to five years old. I had no ideas about pandas at that time so still not sure if it was pandas related or if it was purely age related behavior. My daughter however never has had any sleep related issues or anxiety.

Can anybody who has already completed this survey comment on how much time it took them to complete it. With kids home for summer I am constantly being pulled in ten different directions. If this survey takes a significant amount of time, then I will have to allocate my time so that I am not interrupted in the middle of it. Thank you.

You could call the NIMH and talk to them. They are actually doing a clinical trial, but not sure if you son is old enough. It could not hurt to call. It definitely sounds like pandas to me though. Good luck.

T Anna, I have never seen the show, but the kids at school nicknamed my son Sheldon ( well actually nicknamed a mole on his neck Sheldon-7th grade boys). I finally had to go complain to the school after this went on for 5 months.... It was ridiculous and stupid. I wondered where they got that name from. Now I will have to watch the show. Thanks for the heads up.

In Mississippi, where I am from, it is one of only two states that does not allow for either religious or philosophical exemptions for school enrollment.... The only exemption is a medical one. Believe me I stressed out really bad last summer about it. The good news is we went to a great specialist who had no problem writing the exemption after our pediatrician had remained " up in the air" about if he would write it for my son. I will just say this tough, I would have rather homeschooled than give my son any vaccines at the time. The process was complicated but I feel so much better that I fought the beaurocrat policies and got my son into school. Whatever your decision please just don't let him bully you. Find a new doctor.

Dear momentsOCDson, Gosh..... Your post hit the nail on the head on so many different levels around here. I know it's not funny but almost had to laugh about your cocktails with dinner comment. My son reacts the exact same way..... I also worry that my son will ostracize himself from his friends just because they use a few choice words and such. My son is going in eighth grade this year and an incident happened last year where the kids were trying to pressure him into saying a "bad word" because my son had said to them "I have never cussed" so of course the told him he needed to say this or that. Don't get me wrong, I am not in favor of peer pressure, and I am glad he did not do it just because they were teasing him, but just hoping little stuff like this does not make him an outcast either. He is so straight and narrow I also sometimes just wish he would lighten up. I want him to enjoy his childhood without so much worry. I often wonder if he will become a priest when he grows up.

I am in Mississippi. I will send you a pm.

My son had sudden onset motor tics (one day was fine, then woke up the next day and could not stop head nodding). This started about a week after what I thought was a cold / allergy symptoms. Went to his pediatrician and had to beg and plead with him to run the strep blood tests after two throat swabs came back negative... Four days later he called and confirmed pandas. We tried several different types of antibiotics and found that augmentin seemed to work the best in getting rid of the tics. During the days we were trying to figure all this out my sons OCD also started getting much worse, and he started with some urinary frequency. I knew at that point it was pandas. We are controlling all of his symptoms with antibiotics. I often wonder how many touretts patients out there actually have pandas and with the correct antibiotics they would not have to suffer so much. Anyway, today my son is living pretty normal life. He is about 95-98% most days. He still tics when he is nervous or excited. His OCD is still there but manageable, he gets anxiety and still has some irrational fears but I try to help him through all of it. He goes to school and plays sports and has an A average. If I were you I would at least explore the possibility of pandas. Get the lab work done and maybe a trial of antibiotics such as augmentin or Zithromax. Have you ever noticed if your sons tics subside at all when he has a fever? Or when he is taking antibiotics for anything. When my son has a fever for some reason his tics always subside completely. When the fever is gone they returned. I don't know why but just have noticed this on several occasions with flu or viruses. I hope you find the answers you are looking for. We are all here because we are desperate to find help for our children.

Sounds like you are on the right track. Can dr. L give you a rx for antibiotics? I was just wondering why your pedi is writing the prescription and not dr. L. The reason I ask is because a lot of us on this find that amoxicillin is not effective in fighting this as some of the other antibiotics available. When my son was first diagnosed we did ten days of augmentin and his tics completely disappeared. Then we saw a different doctor who switched him to amoxicillin and the tics came roaring back until we started augmentin again. I hope it will work for your child, but don't be discouraged if it does not work you may just need something a bit stronger. Anyway, welcome to the forum.

Thank you all so much. I think I will try a 1 mg tablet tonight and see how it goes. I have always heard melatonin is very safe so when I saw the warnings on the bottle, I was a little surprised. I guess it is just one of those things the manufacturer must do to protect themselfs from lawsuits. We all need sleep.

Hi all, My pandas son 13yo has been very anxious lately and insomnia has been bad. He starts worrying about not falling asleep and his anxiety gets him so worked up that he is up for hours into the night. It is taking a toll on all of us. We use to be able to give him a vistaril before bed but that does not seem to be working anymore. I know a lot of you use or have been using melatonin for a while now so I thought I would give that a try. I went to the store today to buy some and started reading the warnings on the bottle. One bottle said that it should be given to adults only, and consult physician about other possible drug interactions. Another said to avoid if you have any autoimmune condition. I always assumed melatonin was very safe. I tried to call our pandas treating dr. But she is out of the office. Have any of you been told not to use it by your doctors? If so what are the concerns.... I am getting desperate for a good nights sleep. At the moment, my son is only taking augmentin 2x daily and probiotic. Nothing else. We have tried to calm him down by giving warm milk, hot baths, vistaril, reading, I even ordered him a new mattress, although it has not been delivered yet. He is about 115 lbs. what would be a good doseage to start with.

Just wondering if the augmentin doseage was on the high end for your child's weight or on the low end. It may be that the doseage was just not high enough to actually kick any infection. Or you may need to try combo antibiotics. If you read saving Sammy you will see that Beth Maloney (Sammy's mother) had to keep increasing the dose until he was stable for a long period of time. Just a thought.

Have you thought much about any OCD your son might have as that is one of the major hallmarks of pandas/pans. Keep in mind that OCD presents itself very differently in kids. You can google ocd in children and it can give you many examples of how ocd might present. Also, I hope you got copies of all labs that have been run so far by your pediatrician. Those can serve you as a baseline. You should request another ASO test so you will know if his numbers are increasing or decreasing. I can't say if you should go to either of those neurologists or find another one in maybe a different town or something. You can look on this forum for the list of doctors or go to the saving Sammy website and Beth Maloney has a list of pandas friendly doctors there as well. Whatever you decide you need to find answers. My son also presented with mild tics with his first two episodes which went away after ten days of antibiotics. The third episode was not as easy. They started immediately overnight and were much more resilient. He also had many of the signs of pandas at moderate levels that I may not have even noticed if I was not looking for them. Many of the pandas kids are diagnosed between the ages of seven and eleven. At least you found this forum and are educating yourself so whatever the diagnosis you will be prepared.

The three week cycle above refers to the typical life of an antibody in a healthy person. If a healthy person gets sick then the body creates antibodies to fight off the virus/infection, then once that infection is gone the antibody starts to then weaken and eventually die off because it is no longer needed. I believe this process normally takes about 21 days. Just curious if our children are continuously making more antibodies even after infection is gone???? Or, are there always chronic infections causing the body to produce more.

Gosh, if only this genetic type of link was observed between doctors instead of engineers, then maybe more of them would be knowledgable about all of this and we would not have to fight this at every turn. Maybe even a cure by now or at least a protocol.

You could call the NIMH to try qualify for the pandas study. She sounds like a good candidate. No SSRI use or steroid use.