Dedee

My guess is there is a strep carrier around one of your girls. Could easily be in school. We believed that my son had a carrier when he was in 5th grade. That was the year we finally started daily antibiotics after four infections and tonsillectomy. Grade schools are rampent with strep. I would do whatever I could for daily antibiotics if you really think your daughter is PANDAS. That much strep eventually takes it's toll. After four in a row, my son started having horrible tics and terrible PANDAS symptoms in an explosive manner. Seemed that it all built up and hit at once and I'm telling you, it wasn't pretty. She needs to avoid strep at all costs. Good luck. Dedee

I agree with the others. Absolutely test again for strep. My non PANDAS son only complains of stomach ache with strep. It takes another week usually (if I don't pick up on it), before his throat hurts and fever starts. Just as a side note to some. I have purchased the kits for rapid strep testing on line. They are very easy to use. I am an RN, but I assure you any one who can get a throat swab can use these tests. They come with complete instructions and for me, have always been as reliable as at doctors offices. It helps me know when to take my kids in to the office. I have three children and since my oldest is PANDAS, I am always worried when the younger two complain with sore throat. I test them immediately at home. If they are positive, obviously they go straight to the doctor for antibiotics. If negative, I feel ok about waiting another day to see how things play out. It just keeps me from freaking out everytime someone clears their throat around our house. Anyway, just sharing. Dedee

Lisa, I am so glad to read such an up lifting post. How wonderful to have a physician who is so supportive and actually up to date on PANDAS. As you say, it is so validating to have someone who believes you and understands your child and comprehends what you have been experiencing. When we finally saw Dr. Murphy (after years of wrong diagnosis), I was literally on cloud nine for weeks. Even though my son hadn't been "cured", it was the greatest relief to know that he was going to be ok because we now had a doctor who understood. We had been fighting for that for years. I am so encouraged to hear that more physicians are being educated and hopefully fewer children will suffer in the future. Good luck to you and your family. Keep us updated. Dedee

Lacy, You have gotten great advice here. I just want to say how sorry I am for your daughter and your family. I can feel your anguish and know so many here can relate to what you are going through. I pray that things improve quickly. I also hope that you are able to find a knowledgable supportive physician soon. That will ease your burden tremendously. I agree with the others regarding the azith and advil. I believe it would be very beneficial in this situation. I know you must be exhausted. What your family is going through is horrible. There is no easy way to get through this, so don't be hard on yourself. You are doing a great job. I am so proud of all the parents here who are such persistant advocates for their children. I am praying for your family. Dedee

Amy, I have always noticed that most say that their children are of high intelligence. The physician that saw my son also said this is a common trait. When my son was first diagnosed with ocd (not PANDAS), his then pediatrician told me that most physicians are ocd. That's what makes them good, the attention to detail. It's being able to keep it under control that is the hard part. I think my husband definitely has some ocd tendencies. He is an attorney and to say he is detail oriented is putting it mildly. I am also an RN. I think the previous poster was right though in that the biggest difference is that we don't "come apart" when our ocd issues don't go just right. It is all a matter of degree. I think there is most certainly a common thread among many of our families and children. Very interesting. Dedee

Well, I have wondered if he may be out growing the PANDAS because of his age and clearly to look at him he is going through puberty at a rapid rate. He is the size of an adult man already 5'9" and 175lbs. He already has facial hair and looks much older than his 13 years. However, the simple fact that he still reacts when my other children have strep (even though he doesn't get it), tells me that we are simply "controlling" the symptoms. Back before christmas he had an episode where he began to have tics again. He had not done this for almost a year. They weren't terrible, but defininately noticable. Thank goodness he really did not have any real behavior issues at that time. We went to the pediatrician and stopped the daily antibiotics and started stronger ones (augmentin) for a two week period (even though his strep test was negative), then back to the regular ones. This seemed to help about 50%and the rest just sort of resolved gradually over the next couple of weeks. So just when you think you have this thing licked, it kicks your butt again. So I never let my guard down. I watch him constantly for flare ups, behavior changes, etc. I'm sure you know what I mean. I still feel really fortunate, but I haven't relaxed yet. dcmom, about the T&A, I personally feel that for our situation it was very helpful. His tonsils were huge and full of pits where I believe the strep was never really cleared. It may have gotten better for a while but always there in his system causing the constant immune response. Immediately after his surgery he began to improve. I realize that some physicians will tell you that they can still get strep without tonsils and that tonsils are a defense line, etc. We took all that into consideration, and decided in our situation, we believed this to be a constant strep source for our son. Our ENT was supportive of our decision, even though he was not very informed about PANDAS. Of course, I realize that ENT's are surgeons and that is there primary job. Still, after making it through a rough recovery process, he has done very well. I would make the same decision again. It's hard to know what is the right or wrong thing. Only in hindsight is it clear. You can only do your best and know that is better than what many children are getting. You are pro-active in your childs care. That is the BEST thing you can be doing. Keep up the good work! Dedee

Hi momtotaylor, To answer your question and give some encouragement, my son is now doing very well. I will be honest, it has been a long road. When he first started showing symptoms eight years ago, there was not much known or talked about PANDAS. We were told our only treatment options were SSRI's. Thankfully he did well with that except when he would get strep again and then it all went down hill and we would start over and change meds around again, change the dose, not really realizing that what he really needed was consistant antibiotics. It was very up and down for several years. He would do well for months at a time then after a strep infection we would have several bad months that would gradually improve. He has always been extremely bright (most of these children are) but of course his grades would drop during PANDAS flare ups. He was IMPOSSIBLE to try to do homework with during these times. Constant crying. Couldn't figure out math that he had no problems with only months before. Looking back now, very typical PANDAS behavior. Of course, back then, I didn't have the information I have now so I thought we were all going crazy. When he was 11, he had strep four times over a few months time. Needless to say, everything started coming back. On the fourth strep episode he woke one morning (while on antibiotics) with explosive violent tics. He had never, ever had tics before, only the OCD. It was extremely frightening for him and for us. It is a long story, but we eventually saw a pediatric neurologist, psychiatrist, infectious disease, ENT, of course our pediatrician. We ended up removing his tonsils and looking for another doctor who had some clue about PANDAS. All of the other specialist we had been to were of no help and by then I had found the diagnosis on my own and talked to my pediatrician about it. She agreed but didn't know much about it. She said she would consider continuous antibiotics (and give a prescription) if I could find a specialist to confirm that this was the best treatment choice for him. We already knew this was what he needed because he did great after his tonsillectomy when they gave him post-op antibiotics. All of his symptoms disappeared, including the horrible tics. When we stopped the antibiotics they all came back. We tried this a couple more times with the same result. We also kept detailed records of his symptoms and what meds he was on and so forth. We ended up traveling several hours to see Dr. Murphy in Florida. At the time there were very few Doctors who knew much about PANDAS and she has done a great deal of research on it. She was very helpful and agreed that this was best for my son and sent a treatment plan to our pediatrician. That was two years ago and he is still do wonderful. He is mostly a straight A student (occasional B's). Does all his own homework with no help from us (Whew). Most improtantly, he is a very sweet, even tempered child. We have had a few minor issues, but nothing compared to what we have had in the past. I think what you have going for you is that there is so much more information now (although still not nearly enough), and at least a few more doctors are being educated that you should be able to find someone to help you through this. You have many more treatment options open to you than we did when my son was 5. I don't see why anyone now should need to see their child suffer for years and years with what is available at this point. Granted, there aren't any real "cures", but much better than where we have been in the past. I am very optimistic that with the wonderful parents we have working on this now, it will move at a much faster pace than in the past. I am very proud that you are taking a stand for your daughter. It is a constant battle, but definitely worth the effort. Hang in there. Dedee

I just want to say welcome and I am sorry that you have to be here. There are many of us here who have been where you are at different times. My son did an overnight as well with severe OCD when he was 5 (he is now 13). Just as you describe, very concerned about rules and constantly confessing and apologizing. His psychiatrist later explained that this is common childhood OCD behavior (I think that is supposed to make you feel better somehow). Anyway, we really didn't have a good PANDAS diagnosis at the time and constant antibiotics were not the thing back then. We ended up using a very low dose of Zoloft that did work for him to get him through the acute phase and keep him in school. There is a distinct caution when using SSRI medications with PANDAS children. It may make them worse if used in too high doses. It should not be taken lightly. This is a very individualized illness and different children respond all together different to what seems to be the same therapy. Very odd. All I can say was that it worked for us for a while until we got a handle on what we were dealing with and found a better option. Now he is off all of that and only takes daily antibiotics with a few other supplements. That took literally years to get to. Some here have chosen to use medications for a short time while others have had a bad experience with them. You really have to use your own judgement. My best advice is to find a really good doctor who is knowledgable in PANDAS and can help you sort this out and come up with a treatment plan. The doctor part seems to be the hardest for most of us. Many physicians are very uneducated when it comes to PANDAS. It is extremely frustrating, Sounds like you are on the right path now. Don't stop now and don't let anyone discourage you. If you need support we are here. Dedee

I LOVED IT! I sent the link to my pediatrician and everyone I know. About time we got some media.....

Just to add our experience. My son was 11 when he had his T & A. He had awful pain and a long recovery. I gave both Ibuprophen and Liquid lortabl equivilant. He is a big kid so he had to have an adult dose. I think the surgeon thought one of the parents must be taking his pain meds because I had to call the office back and get more because he was taking so much. Gosh, I thought we would NEVER get through his recovery. He cried alot. But is was very sudden and he just turned the corner and was suddenly improving greatly every day. Once you get through this you will be very glad you did it. Hang in there girl. Dedee

We had a very conservative surgeon who told me no when I asked about motrin after T&A. I went ahead and gave it to him anyway after the first week. He really had a difficult recovery and it seemed the motrin helped more than anything else. I had heard it was harder when they were older (he was 11), but I don't know. I do know it was worth it. He is much better now, but we did not consider him cured. In fact when he finished the 2 week post op antibiotics all of his tics came back. They put him back on them and the tics disappeared again. He has been on antibiotics pretty much since that time. He is 13 now. We have had a few minor bumps along the way, but nothing at all like before. I feel extremely blessed. Good luck with the recovery. I think you will be glad when all is said and done. Dedee

YES, Colleen is right! I remember this also. (I am an RN too) When I read her post I had a big light bulb moment. It is true. It's why care givers should rule out mono before prescribing antibiotics. You go colleen!!!!! Dedee

Lisa, I can only read your post and shake my head sadly. Please, Please, Please find a different pediatrician. The chances of you changing his mind are slim. That isn't your issue to resolve anyway. I am so glad you already have appointments with other physicians. Just don't get your hopes up to high. Sometimes you get lucky and find a "believer", but not always. You really need a good primary care physician that is supportive and on board with his diagnosis. He obviously has auto-immune, illness induced issues. My guess is PANDAS. Thank goodness you are looking else where for help. Good luck! Dedee

Did he only have ASO titers done or were there others? My son also had T & A and did much better with symptoms after. Unfortunately, we didn't have titers done before, but even eight months or so after the T & A and continuous antibiotics his ASO was 1,287 and AntiDNAse was almost 3,000. Understand that while his titers looked awful (we had nothing previous to compare too), he was doing very well. So really, it is about symptoms as they relate to a rise and fall of the titers. At least that is how it was explained to me. Good luck with the procedure tomorrow. Hope you get good results. Dedee

Thanks for sharing that link Kim. Dedee

When we took our son to see Dr. Murphy she asked lots of questions along the ADHD line. We have not ever had any real issues in that area. Our issues have always been ocd, anxiety, tics, sleeping. Anyway, she said we were really lucky, because a large number of PANDAS children will have the ADHD issue as well which really complicates treatment. She kept telling us how lucky we were. I do feel blessed. We will take what we can get. My son does get fidgety somewhat during flare ups but not really hyper or having attention issues. Anyway, just wanted to say I think this is common and many struggle with the same questions you are asking. Good luck with your decision. Dedee

Well I can't add anything to the wonderful infomation you have already gotten regarding your physical findings. However, I just wanted to throw in my two cents on the whole ex-husband issue. I am sure this is hard enough to get through without having to convince him that these issues are valid and worthy of persuing. I rember in the begining I had to convince my husband somewhat before he was on board. That was stressful enough and not near what you are going through. I hope it doesn't come to it, but you may need to consult with your attorney. I feel certain with the physical findings that you have to support your decisions, you have the upper hand on this issue. It is so unfortunate that you would have to stress about this in addition to everything else. I can't imagine. But you need to have the freedom to make medical decisions for your child without defending everything to someone who is obviously bringing in their own personal issues. This is confusing enough. Let's not muddy the water anymore with his hang ups. You are doing a great job! Keep up the good work! Dedee

I love this article. Can you post the direct link? Thanks for sharing. Dedee

We also chose to go the tonsillectomy route. My son had PANDAS since age five with only OCD symptoms. He had been on SSRI therapy with fair control until age 11. That winter he had strep four times in a short period. The fourth episode resulted in explosive tic disorder and of course his OCD and emotional issues had worsened. At that point my husband and I made and independent decision (I am an RN), and went to an ENT and requested the T&A. We didn't have any problems because his tonsils were huge and the ENT agreed they should come out. He did beautifully and it was while he was taking the post-op antibiotics that we noticed the tics and other symptoms would disappear with antibiotics and then return when the antibiotics were stopped. With our pediatricians assistance we actually did this a couple more times with the antibiotics to make sure we were accurate in our observation. Sure enough, he was very predictable about behavior and tics when starting and stoping the antibiotics. That was what led us to seek out Dr. Murphy for a more detailed treatment plan. Our pediatrician said she would write the prescriptions if I could get her a confirmation from a specialist in the field that this was an appropriate therapy. He has done wonderful since that time. We have had very minimal issues since the T & A and antibiotic therapy. I personally believe he was never able to get rid of the strep from the tonsils. The ENT said they were extremely "pitted" when he took them out and he felt like it was the right thing to do. It is a very individual decision. You read varying reports. I only say what we did and how I feel it worked for us. Dedee

Lacy, The unfortunate experience you had with that awful physician is so similiar to what MANY here have experienced in some form before. So hang in there, finding the right doctor is often one of the most challenging parts of fighting the illness. I can't believe how arrogant some are and how they talk to the parents. Many times they imply that it is some parenting issue and not a physicial issue at all. That is when I want to come un-glued. I can tell you this, when you do find the right doctor, you will feel great relief and validation. That's when you realize that all the frustration and fighting and crying are going to pay off in the end. Keep up the fight. It will all pay off in the end. God bless. Dedee

LOL, on your statement about docs! Makes you wonder where little boy hands go doesn't it? Hmmm.... Dedee

Michele, Well maybe it's a southern way of getting a diagnosis. The worms are more active at night. Our doctor told us to explain to the child first what you would be doing of course. After they had been in bed for about 30 minutes, you take a flash light and look at the anus. There was no mistaking what I saw. While they are very small, I venture to guess that nothing else wiggles around in quite the same manner. In our situation, there was no question. I have also heard of the scotch tape method. You apply a small amount of scotch tape to the anus (ouch?) and wait a few hours and then remove it and look on the tape for worms. I think my son may have gotten it from our outside dog. The doctor said this is quite common. We had the dog treated also. It was cheaper to just treat than to test then treat. Whew, the yucky stuff boys bring home. Dedee

My son actually had a horrible case of worms last summer. He had complained of bad stomach cramps for about a week with no other symptoms. Then started complaining that his bottom was hurting after he went to poop. Finally, I put it together and went in and check his bottom in the dark at night. Let me tell you, that was not a pretty sight! We ended up getting treatment for the entire family because the peditrician said it was very contagious. We had to do a thourough cleaning of the house. Wash sheets in hot water, etc. Then in two weeks, repeat the entire process, medication included to get left over eggs. Whew, it was one of the most gross things I have done as a parent. Just a mental thing I guess. Anyway, just sharing the experience. Hopefully you won't have to deal with all that. Good luck! Dedee

I agree with Michele about the saw toothed pattern. That was what we saw in my son for several years. We would have a few good months followed by a strep exposure and many bad months before leveling back off. This went on for several years before he had a tonsilectomy and started daily antibiotics. Now the peaks and valleys are more like bumps in the road. Not nearly as severe and life altering. We had all those same homework / math and handwriting issues you describe. Hang in there. You are on the right track. Just don't let anyone derail you. YOU are the one that is right here and your daughter needs you to fight for her. You are a great mother. She is lucky to have you. Dedee

Amy, OMG, you are so right on target with what you say about those looking from outside the situation. You have to work so hard to tune out all that junk and concentrate on what you know is true of your child. I think that is what has gotten most of us through the hardest times is just the absolute certainty that we KNOW our kids. We live with them every day and know what is normal for them and not. I wish I had a dime for every time someone asked me if there was any "stress" in our marriage or in our house. I wanted to yell YES, it's called PANDAS. Thanks for sharing your story Amy. It is inspiring. Dedee