P_Mom

Hi Ladies, I was wondering if the two of you could do me a big favor? WHEN YOU HAVE TIME, could you give me a quick run down on your boys with PANDAS? I mean, quickly let me know how everything started, and how they are today? Could you also include your course of treatments, diet, and what they currently take ( including supps.) and also how you deal with strep or flair-ups of symptoms? I know you two have been dealing with this for a good bit of time now, and I am a fairly new PANDAS MOM. I have tried to go through all your posts, but, I keep getting you two confused and have a hard time finding the info. I want. I would appreciate it sooooo much!!!!!!!! THANK YOU IN ADVANCE!!!!!!! Kelly

Hi Dedee, I haven't been on since about the 16th or so of December and it was right when your PANDAS son contracted strep. I am wondering how he is doing? Did he get an increase of symptoms? I hope he is doing well. Take care! Kelly

Hi..Thanks to all!! ad ccl... What antibiotic does your child take? Has there been a case of strep since or flair up of symptoms? How old is your child? Sorry, I know, so many questions. Dedee.. First, I will pray for you and your son that he stays stable, believe me, we are all very hopeful for good news. Second, what antibiotic was he on when he contracted strep? Thanks again ALL of you. Michele, I do believe he is going to put him on antibiotics even without many symptoms right now, we are trying to keep it that way. He said you need to weigh the damage caused by strep to the use of long term antibiotics, and in this case, the strep damage, severe ocd/tics, seem to outweigh the risk of long term antibiotic use. That is what I gathered from our discussion, I'll let you know more after we see him in Jan.

Hi! I have one more question for you all. For those of you who have PANDAS children and they take a preventative antibiotic, how long did your doctor say they would be taking this for?? I have found a doc in Ohio who is familiar with PANDAS and will be seeing my son in JAN. I spoke to him on the phone for awhile recently ( I was so grateful..HE actually called ME to discuss this!), and from what I told him and he told me, I believe my son will be placed on a preventative antibiotic. Just curious, because I forgot to ask him.....for how long? Please, all who have input, I'd appreciate you letting me know!! HAVE A MERRY CHRISTMAS!! Kelly Oh, my son is basically asymptomatic right now, so, the antibiotic isn't needed to control his symptoms, just prevent strep. What do you all think? Would Pen V be the best to start out with at this point?

See, told ya I think too much. Anyway, skipping to the mycoplasma, I have read at least one report of a teenage girl waking up one day basically with severe ocd etc. Her strep titers were normal, but when Mycoplasma titer was run, it was significantly elevated. She responded dramatically and immediately to IVIG and remained in remission for as long as she was followed up on. Keep us posted on your research into the whole Mycoplasma thing. God Bless! Kelly

bmom....antibiotics (atleast some of them), can have an immune modulating effect from what I understand, but, there are several other immune modulating therapies.. PEX, IVIG, corticosteriods, just to name a few. Chemar... your son's case is interesting to me because of the sudden, severe explosion of symptoms. I know this is really hind-sight as your son has been officially diagnosed with inherited TS, and, really, what only matters is that he is doing well today, but, I can't help but wonder about a few things. Shouldn't the TS gene have already been "turned on" since he had tics since a young age? I don't know, it just seems to me that SOMETHING had to happen to make the symptoms come on so severly and suddenly, like some kind of infection. Did you ever try antibiotics to see what would happen? You know what else kind of struck me.. on one of your posts you mentioned your older son had strep in the late 90's, and then your younger son was finally diagnosed with TS in 2000, could there possibly be a connection? Many kids show absolutely no symptoms with illnesses. Forgive me for asking all these things, that is just how God made me, with a very unrelenting mind. (hence the genteic connection for my kids! ) Anyway, there is a genetic connection with PANDAS kids as well as TS kids, somehow PANDAS kids are predisposed for this autoimmune reaction. Okay, two more questions... how long after the sudden exacerbation of symptoms did your sons blood get tested for PANDAS? How were his symptoms at the time of that visit? Did you ever get titers drawn for any other bacterias, viruses? (okay, it was 3 questions. ) WEll, that is it, I do think I really should take a break from this computer, sometimes I think it makes me think WAY too much, which I already think too much already . Take Care! Kelly

Hi all. I just wanted to add what I have learned about the whole strep titer association and PANDAS/PITANDS. I have spoken to many doctors and specialists, including ones at the NIMH and also Dr. Murphy. As of today, (and I know they are learning more and more about PANDAS/PITANDS every day), strep titers DO NOT have to elevated for a PANDAS diagnosis. I have been told that it "doesn't work that way." (regarding titers) Also, other bacterias, etc., can cause the sudden onset of symptoms, mycoplasma has been a big one. Patients have had a sudden explosion of symptoms with negative titers, and when treated with autoimmune regulatory therapies have shown DRAMATIC improvement, and even remissions. The main criteria for suspicion of PANDAS/PITANDS is (and I quote) the "sudden, dramatic onset, or dramatic exacerbation of symptoms." Sometimes no illness can be illicited for the trigger for this because MANY kids will show no symptoms, therefore the relation to illness/infection triggered ocd/tics goes unrecognized. Also, negative strep titers do not mean they do not have elevated titers for other illness/viruses. (again, mycoplasma is a good one to check.) Basically it comes down to this... if your child's behavior, wheter it be ocd, tics, unusual behaviors, etc., changes almost overnight and he or she goes from A to Z, I would strongly suggest the PANDAS/PITANDS route be thoroughly checked out. How can a child change that dramatically without any reason? (infectious agent) Kelly

Please note Dr. Murphy's wording in this e-mail. " I am GUESSING....... I THINK........" Remember, PANDAS was just recognized in 1998 by Susan Swedo at NIMH. I do not believe anyone knows yet EXACTLY what happens into adulthood, the kids who were in the study are only in teens and early 20's, and I was told by NIMH that MOST of them are well today and that the PANDAS episodes "aren't happening", but that the parents are "on top of things." I would be learly of anyone saying they know for sure what happens, be it one way or the other. I believe this e-mail from Dr. Murphy says it best, it is very variable, and the outcome can be one way or the other, they simply do not know for sure.

Hi! Obviously the remark about PANDAS carried into adulthood has raised a lot of eyebrows, especially in us PANDAS Moms. I have heard the opposite about PANDAS. I e-mailed Dr. Murphy for clarification regarding this.... this was her reply.... Kelly, I think the long term course is highly variable. I have many that have almost remitted or completely remitted--especially with OCD or tics however--they are more likely to have longer term ADHD issues. I am guessing about 1/3 remits, 1/3 does better, and 1/3 still has longer term problems. It does seem that with some children, as their immune system matures and infection rates decrease, that symptoms improve. I think addressing the symptoms early in the course allows for a more favorable prognosis. Sometimes OCD becomes more fixed because of the family's adaptation to it although the trigger for OCD is biological. This is where CBT is very useful in improving the long term prognosis. We do see 'PANDAS' flare ups in adulthood or new onset as adults. These are likely due to those individuals with lower strep exposure in childhood. I hope this helps but I would say you have plenty of reason to stay hopeful. Best, Tanya Murphy, M.D. Chief, Child and Adolescent Psychiatry Associate Professor, Dept. of Psychiatry

Hi. How do you tell if there is a strep strain in a probiotic? What is it listed as? My son doesn't like yogurt, but, he loves milk and drinks Dairy Smart, which has the same probiotics in it as yogurt does. Do you all think that is safe? Kelly

KKver, I am hoping your son does well now that he is finished with the antibiotic. Please let us know if anything else develops. My son has had two strep related episodes of tics/ocd, the secong one was bad, but ,we weren't aware of PANDAS then, and antibiotics weren't started until 4 days after strep, plus, it wasn't wiped out in first round of antibiotics, so, I believe his antibodies just kept going up and up. I am curious how the tics/ocd are controlled when given an appropriate antibiotic within a couple days of infection. Does it keep the PANDAS to a minimum, or does it get bad again? Thanks, I'll be checking for your post and hoping your son does well. Kelly

Dedee, You said Augmentin was effective before your son got his tonsils removed. What exactly does that mean? Does it no longer work for him? What does he currently take and how is he doing? Kelly

Dedee, Is Pen V in the same family as Augmentin?

Tracy, I forgot to mention, it is VERY common for PANDAS kids to show NO signs/symptoms of Strep throat. That is what makes this very difficult, my son has had strep and showed NO SYMPTOMS at all, we only found out because the rest of us got it and when we checked him he was positive. Sometimes strep can totally be missed in these kids. When these kids get strep, their symptoms are behavior change, tics, ocd. When this occurs, it is very adviseable to get a CULTURE, not just a swab, done on your child. You'll find many posts where kids were positive to strep with no other symptoms other than behavior change. Kelly

My goodness, extremely familiar, I actually got chills a few times reading your post. My sons behavior started to change first, also, before the sudden onset of the tics/ocd. The tics came on one day, got progressively worse along with his ocd, then gradually slowed down to almost nothing. Your description of a few of concerns your son has does sounds like ocd to me. The concern of medicine on him, my son would freak about stuff being on him too, kind of a contamination, gross, germy thing. My son also would tell me goodbye over and over again, and then also run out the door to say good-bye one or two times more, with many hugs, YES, this is separation anxiety!!! My son would stall and stall at bed time, and want to sleep with me, and ask me questions over and over, although when his ocd was at a peak, he didn't want to come near us. Asking the same thing over and over, it is a form of ocd; checking and reassuring, repeating etc. As far as my sons temper, very short when in episode, easily upset, angry, crying, etc. Your sons symptoms are very similiar to my sons, both exhibiting ocd and tics, I would highly suggest you look into the PANDAS/PITANDS, and either rule out or get a diagnosis, because the treatment is unique to traditional ocd, TS, although the symptoms mimic one another. Please feel free to ask any questions, this forumn can be of great help. Take care. Kelly

Hi Tracy, I'd ask how you were ,but, I know all too well. My then almost 5 year old woke up a different kid one day with severe ocd/vocal tics this past summer after strept. We had NO IDEA what was happening and I was a mess for weeks. We are 99.99% sure of PANDAS but as of yet have not received an "official" diagnosis. We have tried, seen docs, neurologist told us he didn't believe in PANDAS and basically gave us no diagnosis what-so-ever. By the time we saw him, my son was asymptomatic. Okay, yes, get blood tests done for strep titers, ASO AND AntiDNAase B titers, be firm, we had to push for these. Please be aware if these results are normal, it does not mean he does not have this PANDAS disorder, it could still be PANDAS but also be PITANDS, which is basically the same thing but caused by a different micro organism other than strep. (other bacterias (mycoplasma), virus, immunizations, etc) What you basically need to look for are the 5 diagnostic criteria for PANDAS or PITANDS .(my son has all of them) If you note, blood titers are not mentioned in the criteria, but, those tests Can sometimes be very helpful. CURE? well, perhaps, IVIG, PEX, has been mentioned to "cure" this disorder, but, those treatments are still highly controversial, as is PANDAS in the first place, which is why you will find it is hard to get help, you have to search around for a doc. Manageable? yes, mainly with antibiotics, but also with supplements, cog. behavioral therapy, etc. Some say antibiotics have been a miracle. Well, PANDAS is diferent in every kid as far as severity, length of exacerbations, etc. But, given no further infection, the PANDAS tics and or ocd, should come on suddenly, and then SLOWLY over the course of weeks or even many months, wane down to a minimum, or even dissappear completely, until, the next strep and/or virus. It took about 2 weeks of the bad vocal tics to disappear, then another couple weeks for the ocd to dissappers, total exacerbation time, about a month. My sons blood titers are normal, we didn't have them drawn till 3 months after symptoms, so, we very well may have missed the boat, I still strongly consider him PANDAS despite the normal titers now. He is doing very well now, thank god!! Nothing anyone would notice except me. We are currently seeking a doctor who we can work with to control this, it hasn't been easy! My goal is long term antibiotic, and if need be, we would consider IVIG if things got to that point. Check out www.webpediatrics.com, this site is helpful, so is the doc, you could e-mail him and he will return your e-mail usually the same day. Check out the studies from NIMH, also. Hope this helps, you are not only! God Bless. Oh, I have the understanding this problem USUALLY ends after puberty when their immune systems are more mature and they have more protection.

Okay, ANOTHER question. Isn't the typical preventative antibiotic dose 1 tsp., 250 mg, twice a day? I got a two week dose, and it has him taking two tsp., 500 mg., twice a day. That is the dose he takes for infection, shouldn't it be lower? (he is 50 lbs.) Thanks! Kelly

Hi, Please keep us posted as to how your child does after this recent strep episode. I will pray all goes well. Kelly

Hi all, I was just reading through some posts and came across a few that stated PANDAS was ruled out because their childs ASO titer was normal. I am just writing because I have learned the ASO titer can become normal fairly rapidly after strep is cleared, but the AntiDNAase B titer may remain elevated for quite some time. I would definitely recommend everyone who suspects PANDAS to make sure BOTH titers are run, not just ASO. Also keep in mind other illness, virus can cause PANDAS (PITANDS), so, blood titers are not always reliable in a diagnosis. Watch for sudden, explosive onset related to illness. PANDAS is Strep , PITANDS is viral, etc. I just worry that docs, people will rule out a PANDAS situation because of blood titers, I was told by NIMH that blood titers are not a reliable diagnosis for PANDAS. You know, I know this is all so confusing and difficult to determine what is what, I have a hard time too. It really helps to share stories, I have learned so much and have gotten good suggestions and advice, Thank you to ALL. Kelly

Michelle, Inyour honest opinion, do you feel all the supps. and diet Dr. DeMio has you on are working? Or do you feel it is the antibiotic and time between illness that is helping? Kelly

Michelle, Thanks so much. Dr. Berger sounds like what I am looking for. I will call and then let you know. By the way, your son is on Pen V? How is he doing? Kelly

Michele, Sorry, I forgot to ask. What do you think or Dr. Demino? What kind of treatment did he give to your son? Insurance coverage? Thanks. Kelly

I know I am posting a lot, I guess I am just getting so frustrated with the "doctors" these days. I thought I found one, but, nope. Does anyone out there know of a doctor anywhere near Pittsburgh who will diagnose PANDAS and then treat if necessary? I really think my son needs to be on a preventative antibiotic. THANKS!!! Kelly

Okay, does anyone know of any doctor out there somewhat near Pittsburgh who will diagnose and trest PANDAS?? I really think my son should be on a preventative antibiotic! HELP!! Kelly

Oh my gosh, back to square one. It is Dr. Erenberg we are set to ee. That really ticks me off because I was SO ADAMANT about the doctor recognizing and treating PANDAS when I called and they assured me he was!!! I told them I don't want to waste my time, over 2 hour drive. I am soooooooooo glad I found this post. It has helped me tremendously and now saved me time, money, and emotional energy! Thank you! Kelly