scossio

my son was dx with hashimotos 1 1/2 years after pandas symptoms started. Dr. B just told me last week that it looked like he was just "hypothyroid" according to one lab report that I happen to bring with me to our appt. I told him the endo dx hashimotos (where else would I get that from?) I am wondering why he is questioning it. All of the info I read says that just about all aquired cases of hypothyroidism in children are autoimmune (hashimotos). He is running all of his thyroid levels again but he has been on thyroid meds for almost 2 years now, again, not sure what he is looking for. I still am not sure how my son aquired it...we have NO thyroid disease in the family at all, but it came on with the pandas...I have always thought PANDAS was the cause of it for my son.

Thank you for all of the responses. My son started with the urinary frequency as soon as the pandas symptoms began 3 1/2 years ago, and I guess if I think really hard there have been times when it has "improved" but has never been back to his normal habits before pandas symptoms. Its hard for me to say if he flares when sick b/c my son is one of those kids who we suspect reacts to others when sick but does not necessarily come down with the illness himself each time. I can't image it would be a UTI since we have been dealing with it for 3 1/2 years and he has been on 2,000 mg abx/day for 3 months now. He also says he does not feel any discomfort at all when urinating...he just always has to go...and it is a normal amount when he does. I am going to have his urine cultured just to be sure, but with the abx I'm not sure anything will show. He is on an SSRI, but again the symptom was there long before he started the meds. Interestingly...his dr tried him on clonidine for sleep recently and he began to wet himself at night, I realized it was the clonidine and took him off of it right away since he had never wet himself at night before. I am just perplexed by the amount of urine he produces, the frequency of urination, and how it connects to pandas. If there are any other thoughts please share, thanks so much! Stephanie

My son has been sick for over 3 1/2 years. We have just received a pandas dx from Dr. B recently. One of my son's most difficult symptoms is urination frequency/urgency. Can anyone tell me why they think this is related to pandas? I know that it is b/c Dr. B agreed and I have read about it in several articles, but I just don't understand the reason for it. Even when he seems to be doing well, no flare ups, stable mood, the urination issues never show improvement. Sometimes I worry that there could be something else going on because it is such a problem for him and it just does not seem to be connected to the other symptoms. Any thoughts would be appreciated.

Thank you so much for the response. I am wondering from what you are telling me if there could be a connection with the fact that his labs also showed that he never developed any immunity from the TDap (tetanus) or in the fact that he developed Hashimotos (autoimmune thyroid disease) at age 7 when all of the pandas symptoms started? Maybe as you said he may have an immune deficency? Hopefully we are on the right track now because Dr. B ordered lots more lab work to be done, and I am very grateful that we have found him.

Well, we had our very long awaited visit with Dr. B yesterday and he agreed that my son's symptoms are pandas related. I was hoping that someone could explain to me a little further about what I learned yesterday? He said that there are something like 12 or 14 strains of strep (is that correct?) and that according to my son's blood work he does not have immunity to any except one of them. Forgive my ignorance, but how does this happen? This is all new to me...are children immunized for strep (didnt think so), or do we produce our own immunity for it? I feel so foolish to ask these questions, but I need to learn everything now. This has been a 3 1/2 year journey that has taken away my son's childhood and severly affected my family. He said that my son could be reacting to those around him that are infected with strep or even those who are carriers. Can anyone explain how the carrier thing works? How could I or someone else be a carrier of strep and not be symptomatic? And this could still cause my son to be reactive? Again, I appologize for the pure ignorance. Lastly I wanted to ask about doing a steroid treatment. I know I have read words of caution here about doing it. He gave us a 2 week taper down RX. What is the reason for that? What are the pros and cons for using it? I have to say, I was almost surprised that he dx my son with pandas b/c he does not have tics, nor does he have the traditional OCD type behaviors that I read about here. He has so many other symptoms that Dr. B picked up on right away, infact he asked me if he could keep the handwriting samples I had brought, b/c it clearly showed how it has affected his motor planning and coordination. (I hope he shows it as an example next time he is on TV...it has very rude comments from his teacher written all over the pages about my son's "SLOPPY" handwriting. I bet she would believe me now! Thanks again for any help. This group is always so supportive! Stephanie

my son was just dx with pandas by Dr. B and he does not have tics.

The hardest part of a "back slide" is the fact that my son gets so out right nasty. He has no ability to control his emotions when he is like this, and I honestly feel abused when this happens. I know that sounds selfish...this should be about him, not me...but I have been living with this for 3 1/2 years and to have 6 wonderful weeks and then get the rug just ripped out, is just so unbearable!

Stephanie -- I know it's hard, but try to hang in there. And yes, we went through a similar pattern with our DS in terms of healing on Augmentin. Now, while it's not to say that you may find out that you need to add some additional immuno-therapies and/or even switch antibiotics in the end, it wouldn't be unusual for the "saw-toothed" recovery pattern to strike about now. I know it's demoralizing and it can make you question your sanity and belief in the path you've traveled thus far. But chances are it will get better again. It seems he's encountered a cold virus that is taxing his system and the antibiotics have no impact upon. I would suggest you try the following: add ibuprofen into the mix and see if that helps your DS through this hard time; try another addition such as valerian root to help take the edge off of some of the anxiety. You might also try upping your DS's zinc; not only is it good for fighting the common cold, but there's some evidence it can help some behavioral issues, as well, such as ADD/ADHD-like attention concerns. As for his school and teachers, do your DS have a 504 or IEP in place? If so, this is when you call upon those accommodations and let the teachers know that now is when he needs them. If not, you might consider asking for a meeting to begin the process so that, in times like these, the teachers will be supportive because they are legally obligated to be so, and not because they're doing your DS any "favors." Failing that, you might try calling him in sick and home-schooling for a week or so to see if you can get the behavioral issues in hand, providing that won't lead to school refusal when it's time to go back. Actually, I am a special education teacher in a local school dist. I work with children with ASD, so I can not home school him. He has a 504 plan and my pediatrician even called to explain PANDAS to the admin and staff, but his teacher could care less. She just sees my son as a behavior problem and contributes to his low self-esteem. His strep titers were normal when we started abx. He was high for myco p. He had chronic croup and sinus infections for years, I believe that is what caused his symptoms. He also developed Hashimoto's when all of the symptoms started. I have him on inositol, along with other meds. I will try to add zinc and the valerian root. I did put him back on ibuprofen. I guess I just never made a connection with him reacting to others b/c he never really had a good period for very long, it just seems he has been symptomatic for all these years.

My son will have his 1st appt with Dr. B on Feb 8th. He has had pans symptoms for 3 1/2 years. Back in November, just as I thought I was going to have a nervous breakdown my pediatrician referred us to Dr. B but started him on augmentin while we waited for out appt. About 2 weeks after starting abx in Nov I started to see a change in my son. Up until about 10 days ago when he got a simple cold he was doing fantastic! His coughing tic was gone for the first time in 3 yrs, his anxiety was dramatically reduced, and we have not had a rage attack in over a month. Now it seems like we are back to square one and I just want to cry!!! How could all of the old behaviors have come back like that? Just from a simple cold that he actually got over quicker than usual? It is like night and day! I am so desperate to get my son back again, how do I do that??? I feel like someone played a very cruel joke on us. My son and my family have suffered so much for well over 3 years with no help and no answers, and for the last month it was like having that little boy back that I once knew that was stolen from me, and now he is gone again. I don't think I will survive until our appt with Dr. B., especially b/c his teachers are NOT understanding or supportive at all! Has this ever happened to anyone where your child was doing great for a while and then went down hill? Does anyone have any advice? Stephanie

My son was dx with Hashimoto's a year after all of his symptoms presented and he was not responding to any psych meds. A psych dr that we were seeing at the time sent him for blood work and found his levels to be more than 2x normal. An endo dx Hashimoto's b/c his ANA levels were extremely high also. His thyroid levels have been back to normal range for almost 2 yrs since he started treatment, but his pans symptoms are still there (waiting for 1st appt with Dr. B in 2 weeks!)

We are still waiting for our first visit with Dr. B in Feb. I just wanted to comment on the thyroid issue. I would love to know how many pans kids have thyroid disease. My son developed Hashimotos which is autoimmune thyroid disease when he first presented with pans symptoms. It was so far out of the blue, but then again so was the "explosion" as I refer to it. I honestly believe his thyroid disease is tied into his pans. I do not believe he would have developed it otherwise. I also want to say that I have totally been where you are. I have lost my faith and trust in drs and I am praying that Dr. B will restore some of that for me. Keep up the good work, I know how exhausting it is.

I am so happy to hear that there are Drs that do believe that there may be a connection with myco p and pandas symptoms. We are waiting for our first appt with Dr. B in Feb. The only thing that came up on my son's labs were high IgG but IgM was normal. Pediatrician says its ONLY a past infection though he has a chronic croup like cough for years.

My ped dr seems to be convinced that the IgG levels only indicate a past infection and does not want to change his abx. This cough has been the one single constant throughout this entire 3 1/2 year experience that we have been searching for answers to find out what happened to our son! I truly hope Dr. B will look at things differently, but we have to wait until Feb to see him. Thanks for your help and I would love to hear more about your daughter and how it affected her (I'm new and just learning how to send messages, don't know how to pm someone first yet ) I would recommend that you see a LLMD (PM me if you want suggestions.) Here's why. MycoP can be a co-infection of Lyme, and many people are finding that they and their children, do in fact, have lyme and other co-infecitons in addition to strep (we are one of those families...I never would have believed it, but clinical signs were very, very positive.) Also, LLMD's are very used to mixing abx cocktails, and honestly that's what you are needing. I had mycoP for probably 3 years...I was very symptomatic, and not one dr. tested me for it, until Dr. B. tested the whole family as standard practice to see if that's what was causing the kids to be sick (in addition to known strep.) My IgM was out of control, as was my IgG. My DS's IgM was borderline, and IgG was extremely high. My children's IgG was quite high, and more recently, DS16 has gone up again (I need to call LLMD, because we are clearly fighting multiple infections...strep super high, too!) Again, even if this is not Lyme (and please, people...don't get on my case about the Lyme issue), I have found that LLMD's really do have the best idea how to treat something as tough as MycoP. We have now been treating mine for over 1year, and it took about 3/4 of a year for me to finally stop coughing. I am also seeing a Lung Specialist, who has told me that I appear to have some permanent lung damage from it. Even he is deferring to the LLMD, as he was surprised that we have been able to get the amount of abx over the amount of time needed. And, as Bat-Sheva said, IgG does not only mean past infection. Even the lab report says that, if they would take the time to read it. The lab report says it "frequently" indicates past infection. Thank you so much for all of the great information...crazy question, but what is a LLMD? A lyme specialist? His lyme came up non reactive on all bands, labs were done at Quest lab, not Igenex, but wouldn't something show up? BTW...I looked at the lab report and it states "a positive result indicates that the patient has antibody to mycoplasma. It does not differentiate between active or past infection. The clinical diagnosis must be interpreted with the clinical signs and symptoms of the patient." Am I crazy, or does that mean if my son still has a chronic cough and his IgG came back HIGH, he could still have an active infection and that could be causing his pandas/pitand symptoms??? Meanwhile he is on 4,000mg of augmentin/day until we see Dr. B in Feb, which won't treat the myco p and if that is what is causing his symptoms, then isn't he taking the augmentin for several months for no reason?

I have had great success with inositol with my non-pandas son (although not sure he is a non-pandas...will see what Dr. B thinks). He has tics, OCD, ADHD, and anxiety. He is on prozac but never had great success till I added the inositol. His anxiety and OCD are rarely a problem any longer, and I know it was the inositol. He is 12 and a real light weight, about 74 lbs. I started with 1 500mg and worked up to 2 500mg in morning and 2 at night, with only positive results. My guy is sensative to meds b/c of his tics, but never had a prob with inositol...its been the best thing for him. Good luck!

My ped dr seems to be convinced that the IgG levels only indicate a past infection and does not want to change his abx. This cough has been the one single constant throughout this entire 3 1/2 year experience that we have been searching for answers to find out what happened to our son! I truly hope Dr. B will look at things differently, but we have to wait until Feb to see him. Thanks for your help and I would love to hear more about your daughter and how it affected her (I'm new and just learning how to send messages, don't know how to pm someone first yet )

I posted asking if there is a connection between myco p and pandas symptoms and the responses I received were so helpful. Thank you to everyone! I am still a little confused though...my son came up high IgG which the ped dr says shows a past infection ONLY, his IgM was not elevated. The problem is that he still has a chronic cough and has been on high dose augmentin for 2 weeks now (not to treat the cough but to see if it reduces pandas symptoms while we are waiting to see Dr. B in Feb). Its not sinuses, reflux (on meds for that) asthma or allergy (been ruled out several times) so is it true that the high IgG mycoplasma would NOT be causing this cough that he has b/c it only indicates a past and NOT present infection like I was told? Thanks again for any help!

456 is a negative number (mine, for instance was 1750, which is clearly positive, and I was very symptomatic.) OK, back to the rest of the thread. MycoP is an atypical pneumonia (basically, walking pneumonia.) It very much causes rages and other symptoms that you are seeing. As a previous response noted, not all abx works on it; typically azithromycin and biaxin are the drugs of choice. That being said, it is extremely important that you treat mycoP completely and aggressively. I had it for probably at least 3 years (at least that's how long I was symptomatic.) We didn't know that it was mycoP, but when my asthma would get bad enough, I would beg the doc for azith, and I'd get 1 or maybe 2 z-packs. The asthma would go away, but kept coming back, AND I had the dry cough, AND I had a pain in a specific spot on the right side of my chest. This was all mycoP. Long story short, it was only when Dr. B. was testing me and my DH for mycoP and strep (he does that in case we are the ones causing the kids to be sick), that's how I finally found out it was mycoP. It has now been a year that I am treating this. I see a LLMD (because it turns out I also have lyme, and because mycoP can be opportunistic in lyme...it can be a co-infection of lyme.) Dr. B. started me on 1 month of azith, but really wasn't completely comfortable going that much longer, because he doesn't specialize in that (totally understandable.) I also see a lung specialist who specializes in mycoP, because I do appear to have some permanent damage. I don't want to scare you, but you really do need to act on this if there is mycoP. It is also highly contageous, so there's another reason to really get on the treatment of it. To do it right, you have to treat it long, hard, and aggressively. And, yes, mycoP could very well be, and most like is at least, part of the cause of your child's symptoms.

456 is a negative number (mine, for instance was 1750, which is clearly positive, and I was very symptomatic.) OK, back to the rest of the thread. MycoP is an atypical pneumonia (basically, walking pneumonia.) It very much causes rages and other symptoms that you are seeing. As a previous response noted, not all abx works on it; typically azithromycin and biaxin are the drugs of choice. That being said, it is extremely important that you treat mycoP completely and aggressively. I had it for probably at least 3 years (at least that's how long I was symptomatic.) We didn't know that it was mycoP, but when my asthma would get bad enough, I would beg the doc for azith, and I'd get 1 or maybe 2 z-packs. The asthma would go away, but kept coming back, AND I had the dry cough, AND I had a pain in a specific spot on the right side of my chest. This was all mycoP. Long story short, it was only when Dr. B. was testing me and my DH for mycoP and strep (he does that in case we are the ones causing the kids to be sick), that's how I finally found out it was mycoP. It has now been a year that I am treating this. I see a LLMD (because it turns out I also have lyme, and because mycoP can be opportunistic in lyme...it can be a co-infection of lyme.) Dr. B. started me on 1 month of azith, but really wasn't completely comfortable going that much longer, because he doesn't specialize in that (totally understandable.) I also see a lung specialist who specializes in mycoP, because I do appear to have some permanent damage. I don't want to scare you, but you really do need to act on this if there is mycoP. It is also highly contageous, so there's another reason to really get on the treatment of it. To do it right, you have to treat it long, hard, and aggressively. And, yes, mycoP could very well be, and most like is at least, part of the cause of your child's symptoms.

I just called last week, they told me FIRST available was Feb 8th. We are coming from out of state...I took it. Good luck!

I am waiting to see Dr. B, next available appt was Feb 8th. My pediatrician called and asked what labs to run so we could bring that info when we go in Feb. Results came in that he is positive for mycoplasma pneumonia. Strep titers were normal, (and he shows no antibodies to tetnus). All else he said looked ok. Quick background...my son was typically developing, but suffered with chronic sinus infections and croup from a very young age. Had adenoids removed at age 3, sinus infections continued, but not as frequent. Croup is still chronic till this day (age 9 1/2). At age 6 he had sudden onset of symptoms (that I can not remember if in connection to a specific illness/strep). He has had strep as well as my other 2 children, one of them repeatedly leading to T&A. That same year he also developed Hashimoto's which is autoimmune thyroid disease (NO family history of). He suffers with rage, mood swings, urinary problems, anxiety, ocd, (possible coughing tic), and regression in writing (very significant), he has been to several psych drs, and tons of meds, nothing has worked in over 3 years. Before I lose faith once again...can anyone please tell me can there be a connection to the mycoplasma and his symptoms? And if not pandas, any suggestions? Also, as far as I know he has never had a "walking pneumonia" or anything other than sinus infections and croup (and strep 2xs). I would appreciate ANY thoughts, this group has been so helpful! Stephanie

thank you so much for your response, it was very helpful. I was trying to figure out if this was another form of his seperation anxiety...the desperate need the be with a friend, but what you said makes a little more sense. There is certainly an obsessive and compulsive act in what he is doing, I just can not figure out how it started and why it is so different from the typical OCD behaviors seen in children. I will look at the web site you mentioned for therapists trained to deal with this type of behavior. As much as I KNOW he can not stop what he is doing and it must feel a thousand times worse for him, it really is so difficult to deal with and I feel like I am at my witts end. Thanks again for your help.

I feel like I just want to crawl into a hole and hide from my son sometimes. We don't have our first appt with Dr. B until Feb 8th, and if it turns out to be PANDAS (which my pediatrician is certain it is), we have been going through this for almost 3 and 1/2 years now. He has some behaviors that I can see are OCD/anxiety, but the most difficult behavior that we deal with from the second he wakes up on weekends, or the minute he gets off the school bus is his constant hounding to play with someone. There is no other way to explain it other than it is a total obsession...no one can distract him from the the thought of it or engage him in an activity to get his mind off of it. He will beg, plead, demand, scream, threaten, do what ever, until I let him call every single child that he has a phone # for. He calls these families over and over...if they don't answer, he keeps calling. If the machine picks up, he leaves a message, BUT keeps calling. Even if he speaks to a child or their parent, and they say today is not a good day, he will try and call back again later. It is so humilating for me! 9 out of 10 times he ends up with no one to play with, and then I have to deal with the temper tantrum, like its my fault. I try so hard to take him places to kill time during the day...movies, bowling, lunch, but the second we get back he is running for the phone (and the entire time we are there he keeps asking "can I call someone when we get home?".) And when he does get to play with a friend and that friend has to leave after a few hours, he starts the whole thing over again about trying to call someone else! I have 2 other children who absolutely do not do this, plus I am a teacher and I have never seen/heard of this in other kids. He beggs other children's parents right in front of me to play with them even when they say not today, he still continues to beg, and he can then even get nasty with them. I am so absolutely embaressed, and really don't know what to do. Talking to him does NOTHING. No matter what I say, he absolutely does not listen to me and continues on with this behavior. Most of the kids are turned off by him by now, and my other 2 kids call him a "stalker". Does anyone here think this could be an OCD behavior? Its not one that you read about in the books, thats for sure, and I am at a total loss as to how to deal with it. I absolutely dread the weekends because of this, its just all too consuming! I would appreciate ANY thoughts and advice. Thanks so much! Stephanie

yes, my son has Hashimotos thyroiditis. Someone else mentioned there could be a family connection to that but there is NONE. Not one person on either side of family with thyroid disease. I had hoped that once his levels returned to normal range his behavior and other symptoms would improve, but they never really did and his endo said his symptoms had nothing to do with hashi's, that it had to be ADD or something. I am so glad you explained about OCD, I am going to look for that book right away. Thanks again!