Kayanne

I also mix the liquid at home. azith was 10 days pen vk is 14 days

I'm really sorry that you are having such a hard time right now! It doesn't hurt to look at every angle, especially PANDAS which is so often overlooked. We took our PANDAS daughter to a pediatric rhuematologist in August, and while he wasn't helpful about PANDAS, he seemed knowledgable about TS because his son has it. He said that typically, children with TS also see increases of tics and ocd from illnesses (this is one of the reasons that many drs don't believe in PANDAS). I just want to give another angle on this....could it be that he has TS (because the medications seemed to have it under control), and the sickness brought out a tic, and then the medications that were given to treat the cough made the ticcing worse? I did a quick search on google, and it didn't reveal anything about inhalers making TS worse, but sometimes parents' anecdotal experience will tell you a lot. Perhaps you could also post on the TS board, and see if you get any responses? Has your son been treated with prednisone for his asthma? Prednisone is one of those medications that many people have found to make their TS worse. Best of luck, I really hope your son gets better! ~Karen

I also think that steroids should be mentioned as an option for a treatment as well as a diagnostic tool...it is just one more thing that a dr would be willing to try if it mentioned on the website...each PANDAS case is unique, and all options should be on the table. My ped prescribes prednisone for skin rashes, allegies and asthma all the time...but when I told him that Dr. L thought prednisone should be prescribed, he was very reluctant because he didn't have any experience with it and PANDAS....if the NIMH website briefly mentions it, then more drs might be willing...and possibly shorten the recovery time after the onset. His argument was valid...If there is brain inflammation, can we be sure with an MRI prior to prescribing the pred? So I told him to order the MRI...it never got that far because we hightailed to Dr. Latmer, and she prescribed the pred. But we were fortunate that we were able to be fit in within the week....waiting to see specialists can sometimes be too long. By the way, GREAT JOB!...I really hope we can get the website changed. Let me know if there is anything concrete like sending an email or making a phone call that could help get it done! ~Karen

I do believe that my dd6 had an earlier unrecognized PANDAS episode around 3 1/2, but I can't pinpoint it to either a vaccine or a strep exposure. Her Birthday is in Feb (yearly shots), and the last two years (prior to this spring because she was in a full blown episode) it seemed that she was more fearful of bees, and not wanting to go outside, but by the beginning of the summer, that seemed to be gone.....Now that I am aware of PANDAS, I feel like maybe, I am reading too much into her history...after all kids go through phases...right? At the end of Oct, she got the flu, without any uptick in PANDAS....based on that (after much stress, and deliberation) we decided to get our kids vaccinated with H1N1. They recieved the first dose on November 19th, and the only thing that has me a little concerned, is it seems like she is slightly losing focus....but not enough to raise any red flags yet...it could be attributed to a few other things too. I actually gave her motrin this morning, just to see if I notice an improvement. ~Karen

how much does your cho;d weigh If you were asking about my daughter, she was about 42-44lbs and six yrs old when she took the Clindamycin in May this year. This is a high-end adult dose. DO NOT use the liquid Clindamycin if your child cannot swollow pills. Have the pharmacist make caspsles that you can open. We added the powder to chocolate pudding.

3 out of 4 of my kids were piggybacked with Rifampin on days 7-10 of a 10 day course with other antibiotics. It cleared two of my kids. It took a fouth course of antibiotics (Clindamycin 300mg 3/x day for 10 days) to clear my PANDAS daughter.

mati's mom, Did Oil of Oregano ever come up in your conversation with Dr. L? Just curious because I know you were giving it to your son, and I was wondering if it reacted with antibiotics the way Olive Leaf Extract is sopposed to? I really like all of the properties that it has, but am afraid it will make my dd6's pen vk less effective...just wondering if you covered that? Thanks, Karen

In August we saw a rheumatologist at Hershey Medical Center. He said that he felt that maybe two weeks at a time about once a month was safe..basically two weeks on/two weeks off. He was willing to let our pediatrician know that. He said it was something that needed to be monitored because some kids have more side effects than others...kind of like a case by case basis. Also he said that teenagers see side effects from the pred much quicker than younger children. Not that he was willing to learn about PANDAS or treat it...to his benefit he was honest with us about that. I felt like I needed to salvage something out of the appt, so I picked his brain on pred, and prophylaxis; and he was willing to discuss them in general terms. I think rheumys are used to using pred, so they may be more aggressive with it. I cannot remember who, but recently someone posted that Dr. L told them every six months is okay for treating this with pred, but I don't think the poster elaborated as to weather this was to treat a more "cronic" case of PANDAS or to treat a current exercerabation. I hope Julia improves very soon! ~Karen

Isabel, I'm really glad that you had a good visit with Dr. Latimer. My daughter was also treated with 6 weeks of prednisone by Dr. Latimer, and I too would do it again. Best of Luck. ~Karen

Judy, I'm really sorry that you are having such a hard time. Irritablility, anger are well-know side effects of the prednisone...so it is hard to say if it is making the PANDAS worse or this is just a side effect. I would say that you should absolutely let Dr. K know what is going on. We definately had some ragey behavior when my daughter (42lbs at the time) was on her higher doses (10mg 2/x day)...but she was beginning to have rages just prior to starting it, so I can't really say if it was a side effect of the pred or the PANDAS. I have asked (and googled many times) 4 doctors (including Dr. Latimer) if there is a difference between prednisone and prednisolone, and all of them have said that they are equally effective. The pharmacy gave us prednisolone instead of prednisone, without us knowing so I would think that if they can make such a substitution it is believed that they are both equally effective. Prednisone is converted in your liver to prednisolone. Prednisonlone skips the liver & conversion process...It is recommended for anyone with liver issues, and I do think that most liquid prednisones are geared for children, and therefore are prednisolone to bypass the liver. In our case, liquid prednisone (5mg/ml) was what Dr. L originally prescribed. We couldn't find it, and by the third pharmacy, were were given pedia-pred (5mg/5ml). So we just adjusted the mls to get the correct dosage. We emailed Dr L. that monday just to double check that it was okay...she said the dosages were correct...however, I didn't mention the brand, and I didn't realize yet that we were given prednisolone. A few weeks later...our dd still had many PANDAS issues that we were very concerned about...but she did make some improvements. The original pharmacy who filled our azith script, ordered the correct prednisone, so when I went to refill the antibiotic, I also picked up the bottle of prednisone intensol (5mg/ml)...they could not add flavoring because it was too concentrated...it says right on the box, "Pharmacist: Do not repackage the contents of this bottle." That morning, I put 1ml with 1 oz of apple juice as per the instructions....my daughter hated it...I tried a little bit---NASTY. But I promised her we would only use it again if we ran out of the minty stuff (pedia-pred). Over the next 24 hours we saw a lot more improvement. Then for the next week, we used the pedia-pred. We were still really concerned about her at this point...still not socializing, she struggled to even get words out to us, she still couldn't even make decisions. With three days left we ran out of the pedia-pred, and started the prednisone intensol...we used soda (Sprite) instead of juice...I would put 1oz in a medicine cup, and add 1 ml of the pred...she was able to tolerate it that way. We saw SO MUCH improvement those last three days that I began to look on the internet to see if there was a difference, and that was when I learned that we were giving Rebecca prednisolone and not prednisone. My gut is telling me that in our case there was a difference. But Dr. L said it was just the cumulative effect of the medication. She was so close to her baseline, that we continued to give her 5mg/day (1ml) until we were able to get a message to Dr. L. We were expecting her to allow us to continue for an additional week...Andrea's message to us was to keep giving it for two more weeks. I hope this info helps....sorry it is so long...I just cannot seem to write a small post!! Good Luck ~Karen

Just an FYI...you cannot take olive leaf extract and antibiotics at the same time....I really hope you get some relief soon! ~Karen

Buster, What would you consder long-term prednisone? We are currently not seeing any PANDAS, however, Dr. Latimer feels that we should be able to control it in the future with steroid use. I wrestle with idea of risks vs. benefits, and where to draw the line on giving it. I can't seem to find much more about it on the internet, but the general info...what exactly is it doing? how long before the immune system is suppressed? what about giving it while the body is trying to fight an infection? what exactly is considered short term? If you have come across anything with regards to this info, I would appreciate it if you could post the link. thanks! ~Karen

These are all the same questions that have been swirling in my brain too. I know that I was a little worried because it seems like she was having an emotional fit, that was PANDAS-like, but she pulled herself out of it...My heart was in my throat, and my husband only saw a little girl who would be irritable because she was recovering from the flu. My DH and I have talked circles about when we think prednisone should be given...there is no easy answer...really you know your child best. During our last phone consult, Dr. Latimer said to call her immediately if we see any PANDAS re-surface...I think my husband and I came the the consclusion that we would let Dr. L determine if it is really needed... I think I would up the zith prior to trying prednisone...see if you get any benefits from the other properties of it. The Tamiflu may also be contributing to her moodiness. I did keep her home an extra day to rest... Good Luck ~Karen

We had a strep problem in our house last spring. At one point, all six of us were on anitbiotics. The Drs. at first seemed to think we were ping-ponging it, but knowing what I now know...I'm not convinced we fully eraditcated between each positive rapid test. By the third round of antibiotics, the drs doubled up by adding RIFAMPIN on days 7-10 for three of my children. Non PANDAS DD8 and DS4 have had negative rapids and cultures ever since--their RIFAMPIN was in capsule form, which we broke open and carefully added to a spoonful of yougurt. PANDAS DD6 was on liquid AUGMENTIN, with liquid RIFAMPIN within a week of the other two taking their capsules (I think some of the antibiotic settled on the bottom...I just couldn't get it all). She still had a positive rapid 24 days after starting the AUGMENTIN. The ped prescribed Clindamycin 300mg 3/X day for 10 days -- that is a high adult dose. Her throat has been swabbed several times and cultured three times since, and has been negative. Originally the dr prescribed liquid Clindamycin....very very nasty...our daughter had a very difficult time with it. The pharmacy gave us capsules. We would put a small coating of chocolate pudding on a spoon, open the capsules into the spoon...making sure to get all of the medication, and then dollop pudding on top of the powder. We would give her first a spoon of just chocolate pudding, then the medicine pudding, then follow with another regular spoonful of chocolate pudding. Zithromax is an awesome antibiotic, but some strains of strep are resistant to it. That may be what is happening with your six yr old. The ped kept saying that RIFAMPIN and CLINDAMYCIN were mainly used to eliminate the carrier state. Good Luck ~Karen

I'm 36 and I still can't swallow pills... I just ask the dr if I can chew it, and they always say yes. LOL! but don't tell my kids that....I'm determined that they will be able to do it! Although, I'm pretty sure, your not supposed to chew exteneded medications...it can get into your system too quickly. My husband has been teaching the kids with M&Ms. If they swallow a coulple, then they get to eat a couple. Becca takes liquid pen vk, and she is a trooper about it because it isn't very nice...I'm hoping that by the time she needs to be at 250mg, she can just take the pill...traveling with liquid that must be kept cold is an inconvenience. My girlfriend also put small allergy pills in the bottom of a straw, and let her daughter suck it up until she got used to the sensation.

DAN dr means Defeat Autism Now. They are medical doctors who treat autisic kids with things that normal MD don't...I really don't know much about it, but I know they are willing to treat yeast issues more agressively, and are more likely to be cautious with vaccines. http://www.defeatautismnow.com/ The mouth sores could be an indication of a viral infection--and that may be why you are seeing more PANDAS behavior. Your son is currently on Augmentin, right? This is probably unrelated, but when my dd had thrush as an infant, she also had cracks in the corners of her mouth. I had to take two zith packs in the spring, and I started to get cracks in the corners of my mouth, and my dd was on 100mg of azith daily, and her lips would look chapped and her the corners of her mouth would look cracked....In our case, I think it was a slight yeast overgrowth. I would brush all the soft surfaces with my toothbrush (I can't imagine your son would be able to tolerate this though) and then swish plain unsweetened yogurt, and rub it on my lips and the corners...it really healped. I also had my daughter do it when her lips looked chapped...it really helped. I'm sorry that your having such a hard time right now...Lots of hugs!

DD6 --- CamK II was 112 I had ber blood drawn on Oct. 20 -- she was and is not showing any signs of PANDAS right now. So her low score does correlate with where she is. We decided not to draw her blood in June because we were going to start prednisone, and Dr. Latimer told us we should postpone the treatment until her blood was drawn...we didn't want to wait. Looking back (20/20) If I had known how responsive the Cunningham lab was, I don't think waiting a few days for the kit to come in and have a blood draw done would have made any difference now.....Just some FYI for anyone who might find themselves in the same situation. ~Karen

I know it is very hard to stop going a direction once you start, but I also agree that you should consider changing drs. Before we found out about Dr. Latimer, we already had seen an Infectious Disease Dr. who told us to take her to a Pediatric Psychatrist. Basiclly, what we did, was follow the road that our pediatrician had laid out before us...CHOP ID Dr.....ped psych....rhumey at Hershey. but we also saw Dr. Latimer...so we were going down two roads. I am not saying my daughter's ped was not trying...he made calls, and kept coming up with neurologist who didn't believe in it...I had to keep reminding myself that he is a general practicioner, and it is his job to get my daughter to a specialist. Perhaps you can call Dr. Trifelli (sp?) and pursue having your child seen by both...maybe they can discuss your son's case. A phone call to Dr. T's office to explain the situation is not going to hurt anything, but it may lead to more doors of treatment, and a dr who really gets PANDAS. Good Luck ~Karen

I'm so sorry that this is happening to Julia. Becca had her first dose of Tamilflu within 24 hours too, and within 12 hours she was fine. My son was 12 hours behind her in symptoms (and they seemed more severe and a really quick onset), and he was also running and playing at the same time...but his fever took one more day to stop. I'm just curious, did Dr. Latimer give you a time frame in which PANDAS symptoms might appear? Becca's Fever and headache started Wed. night Oct 28...just over two weeks ago....in everyone's experience, would I have seen an uptick in PANDAS by now? I'm keeping my fingers crossed for both of your daughters! ~Karen

Valtrex and Acyclovir are generally only used for herpetic viruses--I think the post that you are recalling was discussing HH6 or 8? (Human Herpes 6) as a possible cause of Autism...I don't have time to search for it right now. MY PANDAS dd6 and ds4 had the flu two weeks ago. We have not had pex, just a six week course of prednisone in june/july. The ped prescribed Tamilflu for both of them, and it really cut down on their symptoms. My husband also had the flu, didn't take Tamilflu and he was laid up for an extra three days. For us, so far so good...no sign of PANDAS rearing it's ugly head beacaue of the flu! So when you consider that, keep in mind dd's PANDAS is probably a milder case. Tamiflu is known to have some psychiatric side effects, so it should always be considered carefully. That is the main reason my husband and his doctor decided to pass on the Tamilflu, because he has anxiety/panic disorder.

This is so true! And it give me and my DH a real sense of gratitude that our child had been returned to us, when so many others are still struggling with this and other things like Autism--that they may not see a recovery... During our phone consult with Dr. Latimer in Sept, we were thanking her for all that she has done, and she said that treating PANDAS children is "gratifying" to her because they do get better. My Daughter doesn't like taking her pen vk twice a day, and she said to me once, "When will I be normal and not have to take medicine?" I tried to explain to her that many, many people take medicine every day... She is only 6 yrs old, but my DH and I feel that she pulled out of her episode with more compassion, empathy, and strength. We actually feel that she is a better child because of it. Now, do I live in FEAR that this will happen again?...absolutely. It is my belief that there is no real cure, just VERY GOOD ways to manage it. My uncle was 10yrs old when he had Rhumatic Fever, he spent a long time in two hospitals. He said that he overheard the nurses say, "That (insert last name) boy probably won't make it", about himself. He made a full recovery, and took penicillian for 20 years without any bowel issues or side effects. The prognosis for these children is very good....here is a very positive thread: http://www.latitudes.org/forums/index.php?...ic=5315&hl= ~Karen

Actullay, they hooked her up with Dr. Leckman at Yale, and he is a top PANDAS researcher....he tried to get the IVIG study going for it, but couldn't get the funding. I was overjoyed to know that Dr. Leckman will be involved to help this family. What I found outrageous was that Dr. Nancy never even brought up the idea of PANDAS in the first segment...she'd rather mention MUNCHAUSEN than PANDAS! This was weeks after the Saving Sammy Segment...does she even have a clue!!! On the second segment, she sounds as if she believes in PANDAS much more than in the Saving Sammy segment, so maybe a conversation with Dr. Leckman has changed her mind.

Don't hesitate to contact Dr. Latimer. This is exactly what she needs to know. When she put my daughter on prednisone for a month, she told us that if she was not 99-100% recovered by the end of the month, then we need to consider IVIG or PlasmaPh. So...you are at the end of the month, and she needs to know what is happening so that you can forge ahead with other treatment options. Just a side note....this may not even be relevant in your case...but we saw such dramatic overnight improvements by the last three dosees of pred, that we asked to extend it, she said to go for two more weeks...it was only 5mg/day anyway. Maybe there is still an underlying infection, or you are dealing with a viral issue. So sorry that your family is having such a hard time...lots of hugs!!!

Welcome to the forum...although I am sorry that you need to be here. I wouldn't hesitate to email Dr. Latimer...maybe the antibiotics need more time before you back up on the clomipramine....sometimes just the act of decreasing a psych med can create withdrawl symptoms...or he could be getting sick. My husband always had a "foggy head" dry mouth, sore throat and irritability while adjusting to psych med changes...lasting from a few days to weeks. Can you clarify, does your son not ususally have an uptick in PANDAS behaviors with viral issues--just strep?

I'm really sorry that you are here, but you have found the BEST place for support and info on PANDAS. Dr. Beth Latimer is right outside of DC. She is a Pediatric Neurologist who treats a lot of PANDAS children, also Dr. Rosario Triffileti is a Pediatric Neurologist in Middletown, NY. ~Karen