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Alex

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Everything posted by Alex

  1. Just as LLM said, my son never had any instantaneous recovery from his PANDAS symptoms post PEX. We had ups and downs for the first 5 weeks or so but every few days he would have a new 'best day so far'. About three weeks ago he got a tooth abcess/infected tooth and had a major regression. Today he was diagnosed with a sinus infection that we are sure has been festering for at least a week and again saw regression over that week with a major flare up of PANDAS symptoms today. He started Cefdinr tonite and we are hoping to get back on the road to recovery but are certainly very discouraged right now. Hope to post some better news soon. To those considering PEX, the results do take some time. Spoke to Dr. Latimer about this and she said that just like recovery from encephalitis, you need to give it time. If I had my druthers he would be on full strength antibiotics for a long time because we have seen first hand how any infection, not just strep, can have serious consequences once PANDAS is already in place. I also can't believe how bad our luck has been. I want to scream. A tooth infection followed immediately by a sinus infection. Ugh. Alex
  2. When I did my earlier post I was thinking more strep prevention then PANDAS treatment. If there has been no improvement after 5 months I personally think you should be looking at another antibiotic or at least upping the dose of the penecillin. I read "Saving Sammy" last week and it makes a pretty convincing case that Augmentin is worth a try as a treatment for PANDAS symptoms. The thing with Sammy was that it wasn't just Augmentin that was effective, it was a certain dosage of Augmentin that was effective. If they lowered the dosage his symptoms came back. He was on 2000mg per day as the treatment dosage and was I would guess around 100lbs or more during that time frame. If they dropped to 1000 the symptoms came roaring back. Unfortuantely, officialy, antibiotics are not considered a treatment for PANDAS but for strep only, even though there is a ton of anecdotal evidence that antibiotics work as a treatment given enough dosage. Hopefully a study will be done at some point. I know that a lot of Rheumatologists now believe in antibiotic therapy for other autoimmune disorders because they've had a lot of success. There are doctors out there though that believe in antibiotics as a treatment for PANDAS, but you just have to find one. Obviously the Pediatrician from the book believes that way, Dr Nicolaides out of New Jersey. We took our son to Dr. Geller, the other doctor from the book, and he precsribed Augmentin as the treatment. We chose to go the Pex route but know we have that in our back pocket just in case. I think for anyone struggling to get full strength antibiotics it would be worth calling Dr. Nicolaides office to see if she would speak with your own doctor, or give your doctor the book. Either way, don't settle for continuing symptoms. This is treatable. Do everything you can to treat it. If your child has PANDAS then, by God, they should get over it completely if you do the right things.
  3. Why do you add the antibiotic prior to the dental visit? Is it because of the cleaning possibly putting bacteria in the blood? Just curious. Thanks, Alex
  4. The study that Swedo and colleagues did on antibiotic prophylaxis showed penicillin and azithromycin to be pretty equal in effectiveness at preventing strep. The penicilln group got 250mg twice a day, and the zith group got 250mg twice on one day of the week. Of the kids in the study, 11 in the penecillin group and 12 in the zith group, one kid in each group got a strep infection over the year of the study. I'd personally prefer no strep infections but the researchers seemed pretty pleased. Here is the link to the study if interested. The advantage I see to the zith is that being a little late with a dose isn't as risky as missing a penicillin dose becasue the zith has carry over effectiveness. http://intramural.nimh.nih.gov/pdn/pubs/pub-9.pdf
  5. When my son went to the dentist last week and they found an infected tooth, the dentist prescribed an antibioitc. He knew my son was on zith for PANDAS and added erythromycin for the tooth. I just read the second study Swedo and colleagues did on antibiotic prophylaxis for strep and they found 500 mg of zith once a week to be largely effective at preventing new strep infections. Don't quite remember the numbers but of 20 or so kids on the zith, only one got a strep infection during the year of the study.
  6. I personally wouldn't let the replies to this thread be to discouraging to anyone looking at PEX or IVIG as a treatment. Parents whose children are no longer suffering from PANDAS are, in my opinion, highly unlikely to be spending much time on this forum. They are off leading their lives and enjoying time with their recovered children. My son had PEX recently and I am determined to post periodic updates regardless of the success or failure of the procedure, but, I find that already, when things are going well, I am not spending time here but off trying to enjoy life a little again. DR K. has treated hundreds of kids with IVIG. He says it is a cure. Dr. Latimer treats with IVIG and PEX and says they are cures, these kids get better. The study done on IVIG and PEX showed that at the 1 year mark the kids in both groups had improved greatly. Those are the things I personally would take to the bank. For those whose children are still suffering after these procedures, my heart goes out to you, but keep working and advocating for your child. If they have PANDAS, then there is absolutely no reason that they can not be cured eventually. If my sons PEX does not work completely then I will make sure that the antibody levels haven't come back up, indicating more strep exposure, or hidden strep in the body. We will do more PEX if we have to, IVIG if need be, and certainly find someone willing to prescribe long term full strength antibiotics. The good news I think is that awareness and belief in PANDAS is growing in the medical community and slowly more and more doctors will be willing to fight it agressively. I read "Saving Sammy" a few days ago, and along with being reminded to never give up, I was filled with renewed confidence that even the worst cases of PANDAS can be overcome if treated correctly. Thanks, Alex
  7. My wife went to see Beth Maloney give a talk at a Library here in Maine yesterday. She says it was a great lecture. Lots of crying as you can guess from lecturer and attendees. Anyway, she spoke a little about the Today show appearance and said that prior to the televised segment she had not spoken to Nancy Snyderman, the Today Show doctor, one iota. I find that mind boggling that the Today show would let Dr. Snyderman appear as the medical authority on this topic when she hadn't even spoken to the author or the boy who had the disease, and obviously new nothing about PANDAS. Her skeptical attitude is exactly what you get when someone in the medical profession gets theiir first exposure to the idea that a mental illness could have an indentifiable medical cause. Very frustrating.
  8. Hi all, My son had PEX 5 weeks ago. I did a post last week about how he was doing well and improving but still with some issues. That week he had been complaining of a tooth ache and that he thought he had a cavity. In hindsight his PANDAS recovery seemed to be stagnating about that same time, but we were reluctant to admit it to ourselves. We brought him to the dentist last Tuesday and turns out he had an infected tooth/ tooth abcess. The dentist put him on erythromycin to fight the infection on top of the 200mg of azith he has been taking as a strep prophylactic. The plan was to see him in 2 weeks to see if the infection was gone. As the week went on his OCD increased signifcantly, urinary frequency increased and moods went down hill. On Fri, three days after he started the eryth, after a terrible morning, we had the tooth removed. The oral surgeion said that it was unlikely that the antibiotic would have been able to get all the infection considering the shape the tooth was in. (We think we do a good job on the kids teeth by the way!). Today, Saturday, the day after the tooth was pulled, my son had a terrible day, good amount of OCD, terrible mood, withdrawn and a mega rage the likes of which we haven't seen since before we knew he had PANDAS and he got his first antibiotics. We are hoping that his immuine system was struggling to fight the infection and caused a PANDAS flareup and that things will settle down over the next few days. Our big fear is that GABHS was the infecting bacteria(getting a throat culture tomorrow), or that a different strep strain, or other bacteria is causing his body to produce the same harmful antibodies that the PEX removed. Just wondering if anybody has any knowledge on something like this? Thanks, Alex
  9. Hi all, here is the link to the PANDAS story on the Today show this morning for those that didn't see or record it. There is also an excerpt from the book. http://today.msnbc.msn.com/id/32987757/ns/today-today_books/ Alex
  10. Hi all, it's been four weeks since my son finished PEX at Georgetown Hospital and I wanted to give a quick update. So, drum roll please, he is doing really well and has been improving steadily, but still has a way to go. The most satisfying improvement we have seen is the reutrn of his personality. From the time his PANDAS started until a week or two after PEX he was pretty much incapable of relating to others in any sort of normal fashion. Since about two weeks after we got back from the hospital we have been seeing his old personality for a good portion of every day. Last week we took a family trip to Boston from Maine, and on the entire two hour drive home, he and his mom sat in the back of our Mini-van and my son talked about school, his interests, told jokes, laughed at his mother's stories and expressed his emotions. It was great. I looked at my wife in the rear view mirror from time to time and she would catch my eye and we would both get teary eyed. It's great to have him back, even if it's not 24/7 yet. One of my sons symptoms throughout PANDAS was frequent urination. It remained a symptom through antibiotics and prednisone but as of about two weeks ago he is back to going a just three or four times a day and can sleep through the night without having to go. When we first got back from the hospital, his OCD was actually worse, then declined somewhat over the course of the first week back home and then exploded again for one day about a week after finishing the PEX. Later that night he came down with a cold, so we are guessing that his immune system was ramping up to fight the cold and caused a brief flare up in his PANDAS. Since then the OCD has been in steady decline. He does a little bit of checking at night after going to the bathroom before bed, and still is avoiding the occasional crack in the sidewalk but other than that seems to be largely free of it. The most discouraging aspect of the recovery so far is that he is still getting angry very easily. I would say though that this too is improving. He hasn't had any major rages in several weeks and seems to get past his anger more easily, but his terrible moods are still impacting him and the family pretty negatively. That's all for now. I'll post again in a month or so to give another update. On a side note, my son is on 200mg of Azithromycin every other day. We are not as confident as we would like that this is a sufficient dose to prevent a strep infection should he get exposed. Any thoughts. Thanks, Alex
  11. LLM, thank you so much for your response. Just hearing someone elses story is reassuring. As I mentioned in my post, removing the tape covering the catheter was by far the worst part of the process for my son, just as for yours. I think for now we just need to keep my son healthy, do everything we can to keep him strep free and let the process take it's course. I sent you a PM last week with our phone number. My wife would love to speak with you if you get a chance to call. Thanks, Alex
  12. Hi all, my 10 year old son completed Plasma Exchange/ Plasmapheresis (PEX) one week ago. I wanted to write a description of the process for anyone who is considering it becasue we had a hard time finding out the details to our own satisfaction prior to treatment. My son's course of PANDAS was very similar to many of the descriptions we have read on here. He developed rapid onset OCD about 5 weeks after a sore throat/fever. In the weeks prior to the OCD kicking in, he had lots of emotinal volatility, frequent urination, and separation anxiety/ night fears. Over the course of the last few months he was treated with antibiotics and prednisone and improved under both. After the prednisone he regressed some and was still a long way from symptom free. We decided that we wanted to continue with a further course of treatment and decided to go with the PEX over IVIG. The main reason we went with the PEX was we believed, possibly mistakenly, that it was more likely a one time cure for PANDAS then the IVIG. Our reason for this was that in the one study done on these treatments, PEX was a somewhat more effective treatment than IVIG, although both proved largely effective. Also, our Neurologist, Dr. Latimer, told us that of the patients she has treated, she has had patients have IVIG treatment and then later PEX, but never the other way around. Lastly, the PEX that they do at Georgetown is not considered to expose your child to any donor blood product whearas the IVIG does. There is a chance, however small, that the IVIG could contain an as yet undiscovered pathogen. But again, it was a really hard decision and I'm sure our research/reasoning had some gaps. It basically came down to a coin toss. We arrived at the hospital on Monday, August 17 for a consultation with the Oncologist/ Hematologist who oversees the actual PEX. I told her all the details of my sons PANDAS including the diagnosis of PANDAS from several different doctors. I don't think she would have been comfortable with proceeding if there were any doubt about it being PANDAS. We returned the next day to be admitted and start treatment. The treatment takes place entirely in the Pediatric Intensive Care Unit(PICU). Once arrived, they don't leave the ICU until discharged. The first step is to put in a standard IV which remains throughout the hospital stay. It is used for the administering of anaesthesia when the catheter for the PEX is inserted, for saline drip throughout the stay, and for any other medication that needs to be inserted intravenously. An ICU nurse attempted to put the IV in my son's arm unsuccessfully. She couldn't tap the vein for some reason. So they chose to wait on the IV and have the anaesthesia nurse put it in prior to the insertion of the catheter. When it was time to do the catheter, the anaesthesia nurse put the IV in on top of his hand with no problem. After the IV was in, my son was given Propofol intravenously to put him to sleep for the catheter insertion. I was asked to leave the room at this point. The catheter was put in by one of the PICU attending Physicians, a pediatric intensivist. He gave us the choice of using either the jugular vein in the neck, or the femoral vein in the groin area for the catheter. Apparently there are advantages to both. We chose the femoral because we were told it is slightly safer. Not sure why, farther from the heart I think. It took what seemed like a long time to get the catheter in. Afterward the Doc told me he had a hard time finding the vein again. Ugh. It was mid morning by the time the catheter was in but he did not start the first exchange until late afternoon. My son and I passed the time playing video games, board games, watching movies and reading. They have a great set up there at the hospital. For the first treatment, the nurse arrived with the PEX machine around 3p.m. The machine works by removing the plasma from the blood using a centrifuge. The blood cells are then combined with a synthetic plasma called Plasmanate and then returned to the body. Dr. Latimer prescribes three full rounds of PEX. Each exchange removes 75% of the plasma. So after three treatments, pardon my weak math, well over 90% of the original plasma has been replaced, effectively removing well over 90% of the harmful antibodies. The nurse, who is a Dialysis nurse, who filters peoples blood in various ways day in and day out, was great. It took her about 15 minutes to get the machine up and running and get the lines hooked up to the catheter lines. Along with the plasmanate the machine also adds calcium and saline to the blood mix returning to the body. The whole process took about three hours. There is a Doc from the pediatric oncology/hematology department on the floor during the treatment but it is the nurse who runs it. My son was awake for the procedure and we watched a movie and I read him a book. He had a few minor complications during the first treatment. His blood pressure dropped somewhat and the nurse called for the Doc. It was a different doc then we did the consult with but he was great too. He upped the saline content of the return blood and the blood pressure returned to normal. Later, my son had tingling in his hands and lips, indicating that his calcium level was too low. The doc upped the calcium level and everything was fine. After the treatment was over, my son had to pee desperately because he had been sitting there for three hours getting pumped full of fluids. He did not want to eat or drink anything after the treatment until really the next morning when he got his appetite back. Ten minutes into the second treatment my son started sneezing/sniffling, said his throat hurt and got a few hives on his face. The nurse stopped treatment, called the Doc, and he called for a dose of Benadryl intraveneously. The benadryl caused a pretty strong burning sensation in my sons hand that he really did not like, but the benadryl took care of the alergic reaction and the treatment was resumed. Apparently allergic reactions are pretty rare, but seem to be more common in PANDAS kids, maybe due to hyperreactive immune systems. We had to take a day off before the last treatment to let my sons blood clotting factors rebound(fairly common) and then did the final treatment uneventfully on Fri evening. At about 2a.m. Saturday, a resident on the ICU floor removed the catheter. My son seemed to be in a great deal of pain when they removed the tape holding the catheter in place. I could tell that the resident felt he was overreacting and he had had a great deal of aprehension about the catheter coming out, but, his groin was black and blue, I assume from the difficulty they had finding his femoral in the first place. We left the hospital the next morning. My son limped for a day or two but now seems back up to speed physically, but his groin still looks bruised. Dr. Latimer does not play a big role while your child is in the hospital. I'm not sure what her standard practice is but she did come by the hospital and check on us during the last treatment but I think we sort of guilted her into it. I think we were expecting her to play a bigger role but there really is nothing for her to do. It probably should have been a question I should have asked during our consult with her. Overall, the treatment was a really big deal. As Dr. Latimer said to us though, you chose a big deal treatment to treat a big deal problem. In the end I would say it was a fairly traumatic week for my son. My wife had a very hard time watching him go through what he went through during his treatment. Was it worth it? If it winds up being a cure than I would say yes. If not than I think I will have some major regret and sorrow that we put him though it. So far one week post treatment I would say he has made some progress but is far from PANDAS free. Tonight in fact he had a ton of OCD/ separation anxiety. I can't deny we are a little discouraged but realize that the healing process can take a long time. I will keep you posted. I'm sure I left out some details that some of you considering this option might be wondering about. Please send me a message and I will try to answer. Alex
  13. Beth Maloney, who has a book coming out in September about her sons ordeal swith PANDAS called 'Saving Sammy' will be on the Today Show on Thursday, Sept 24. She has it posted on the appearances section of her website. I imagine her son will be on the show with her.
  14. My Dr told me the point of the antibiotics is to clear out any present strep infection and prevent any regrowth...since they believe the infection triggers the auto-immune reaction.... The tics are a symptom of the inflamed Basal Ganglia, caused by the auto-immune response to the strep bacteria...so in a perfect world...antiboitics prevent the bacteria, which prevent the auto-immune response, the brain does not become inflamed which in turn prevents the tics...but from what I understand (and please someone correct me if I am wrong) Only IVIG or Plasma Exchage treatment actually addresses the auto-immune component of PANDAS...basically resetting the system so a strep infection will ultimately not cause the antbodies to attack the brain in the first place...the antibiotics do not make PANDAS go away...they merely keeps it at bay...my son is responding to the antibiotics, some other children are not as lucky... My 9 year old son has PANDAS and we are pursuing several different treatment approaches. As one approach, we met with a psychiatrist out of Mass General named Dr. Daniel Geller. We learned of him through the website www.savingsammy.net which is promoting a book, Saving Sammy, about a boy/teen who Dr. Geller treated for PANDAS and is now fully recoverd. The author of the book is the Mom, Beth Maloney. In correspondence with her, we learned that her son's only treatment was a high dose of Augmentin for a year and a lesser dose for the following 3 years. He is 100% recoverd from extremely severe PANDAS that went undiagnosed/ untreated for several years. In our meeting with Dr. Geller, he prescribed the same thing, a 'robust' dose of Augmentin for a long time. I am going to make a unique post about the consultation, but to make a long story short, Dr. Geller stated that anti-bioitcs have anti-inflammatory and immune modulating effects, not just anti-bacterial effectiveness. This confirmed to me what I have noticed on here a great deal, kids with PANDAS improve on anti-biotics even when they aren't fighting an active case of strep. Anit-biotic therapy is an emerging field in the treatment of many auto-immunde disorders even though they are not sure exactly why it works. We have a friend who has lupus that goes into remission when on antiibiotics, and reemerges when she goes off. So, anti-biotics are most certainly a treatment for PANDAS, not just for strep.
  15. We have an appointment with Dr. Geller on June 18. We will be sure to post on the forum here after the appointment. Sounds like Sammy's dosage of 2000mg a day was high but not crazy high. I am pasting the adult dosage recommendations from HealthCentral.com below. If I've done my math right, people over around 100lbs get the adult dosage. So from below, Sammy's dosage was twice the standard adult dosage, but only a little more than the dosage given for more severe or upper respiratory infections. Anybody been in contact with Beth Maloney about the Oprah push. Seems to me the fact she has such a compelling story coming out in book form would be appealing to the Oprah folks. Alex Dosage: Adults The usual adult dose is 1 Augmentin 500 mg tablet every 12 hours or 1 Augmentin 250 mg tablet every 8 hours. For more severe infections and infections of the respiratory tract, the dose should be 1 Augmentin 875 mg tablet every 12 hours or 1 Augmentin 500 mg tablet every 8 hours.
  16. EAMom, thank you for your feedback and sound reasoning. Alex
  17. VIckie, that is a good question and I really don't know the answer. My complete speculation would be that IVIG neutralizes the antibodies currently in the child's system so they can not do further harm, but if at some point down the road, when the IVIG treatment is no longer in the system, a strep infection triggers the production of new antibodies that again attack the basil ganglia. However, since this new PANDAS is essentially a new 'sentinel episode', quick treatment with antibiotics, and anti-inflammatory steroid, results in a complete recovery. I think I mentioned that Dr. K. said he has only seen one patient who received antibiotics as their only initial treatment for PANDAS have a complete recovery. That patient was a true first episode and treatment was begun shortly after symptoms began. Therefore, a child, post IVIG, has essentially a new sentinel episode, is treated very soon after symptoms begins, and has a complete recovery. Anybody with more knowledge who can comment on Vickie's question or my speculation? Thanks, Alex
  18. Hi all, Yesterday I did a one hour phone consultation with Dr. K. It was informative and encouraging. We discussed my 9 year old son's PANDAS and he gave me his thoughts on what we should do. As I wrote in a previous post, my son developed rapid onset OCD earlier this month. Our pediatrician suspected PANDAS and had an ASO test done which showed elevated Antibodies. He has been on Cefdinir now four 14 days and is significantly improved but not by any means symptom free. I will summarize as briefly and best as possible what I learned from Dr. K. One of his main points was that for a child my son's age, it is unlikely, in his experience, that this was the first episode with PANDAS, just the first one severe enough that it was recognized for what it was. Prior to the phone consult, we wrote up a medical history for our son and forwarded it to Dr. K. In it we discussed an episode several years ago of severe night fears and nighttime separation anxiety, which also was present to a lesser degree during the day, that our son went though. He was seven at the time and developed a fear of ghosts. We accommodated him more and more to the point where at bed time, both parents would stay up stairs in a separate bedroom until he fell asleep. It progressed from there that he would call out to us, "Are you there?”, more and more frequently until he was doing it more than every minute. On the advice of our pediatrician, we ended all accommodations abruptly, other than periodic trips upstairs to check on him. It was a very rough couple of days but he adapted to the new routine and the family settled in to it's new normal which was he would set up the pillows on his bed the same way every night, same lights on upstairs, same doors open, etc. We would have the same exact exchange of words with him as we headed down the stairs, and we would go up exactly every 20 minutes to check on him until he fell asleep. We probably sound like suckers and I'm sure our friends who saw our ritual thought we were, but in our eyes he wasn’t being manipulative, or wasn’t just a little scared, but was terrified. Our pediatrician assured us that such a high degree of nighttime anxiety was normal. Our gut instinct, which we forced ourselves to ignore, was that his level of anxiety was far above normal. We haven't encountered anyone in our circle of friends who are parents who dealt with anything close to that degree. Had an AHA! moment when Dr. K. pointed out that our son obsessed over the fear of ghosts, and that he compulsively called out to us, "Are you there?" even though he obviously new darn well and good that we hadn't disappeared in the 30 seconds it had been since the last time he called out. Also, the separation anxiety, another symptom of PANDAS, indicated that this was quite possibly all part of a PANDAS episode. Another point Dr. K. made was that with or without antibiotics, if there were no future strep episodes, that the symptoms he is currently undergoing would slowly abate but never truly disappear. He said that if we finish up the course of antibiotics and the strep was wiped out, we would probably see the rituals largely diminish but not disappear, the TICs reduce but not entirely disappear, he would have intrusive thoughts but diminished, and the separation anxiety improve but not go away. Many people, he says, adapt to this new baseline and sort of forget the way their child used to be and go on with life until the next strep infection hits. He made the point that after what he believes to have been the earlier PANDAS episode that our son did not return to his previous baseline. He up until the recent episode, still had night separation anxiety, and still had rituals he needed to perform to help combat whatever thought he was obsessing over, ghosts, monsters, whatever. We then discussed IVIG. He said that for a child my son's age, under 10, that in his experience, the IVIG could, with all likelihood, return Eli to his true baseline behavior, whatever that is. Not the behavior he had before this episode began last month, but our sort of true son before any initial undiagnosed PANDAS. He said the success rate to baseline for children under 10 was 80 to 90%, with success rate decreasing as they get older. He said that only one out of the 200 or so PANDAS patients he has seen fully recovered on just antibiotics and that is was a true first episode PANDAS with the child starting treatment fairly quickly after onset of PANDAS symptoms. He said serious complications with IVIG are rare, 1 in 3000-5,000 and that is why he prefers it over PEX, which he says is equally effective but has a much higher complication rate. Worst he has seen in his 200 or so IVIG PANDAS patients is headache and vomiting which usually resolves within 24 hrs . He said with that after the IVIG, any future step might trigger some PANDAS symptoms but that the child quickly returns to full baseline after antibiotics or maybe low dose steroid (prednisone?) Therefore he does not believe in prophylactic antibiotics for the long term but said maybe one year of antibiotics as the IVIG is returning the child to baseline. That’s all I can think of. If there were any negatives about the conversation I would say that I wish Dr. K had kept very detailed records of how many PANDAS patients he has treated, exactly how successful the treatment was, and what was the long term result. Instead I got that he has treated 175-200 or so PANDAS patients, but isn’t counting, IVIG is 80-90% successful and that he has kept in touch with a few of the kids. To give him the benefit of the doubt, I’m sure he feels that he is not doing research but is instead using a proven treatment to treat patients. In closing, my impression from Dr K. although I don’t want to put words in his mouth, is that IVIG can be transformative for a child with PANDAS. Reading the boards here I haven’t seen too many accounts that back that up. Is there anybody here who has touched base with a large number of IVIG patients who can provide some insight? Thanks, Alex
  19. EAMom, thanks for all the great info you have provided on the board. To answer your question, we live in Maine up the coast from Portland and go to what we think is a very good pediatric practice. When we brought my son in on May 12 the doc just tested the titers. At the time we knew nothing about PANDAS so weren't in a position to ask any informed questions. My son has been on the Cefdinir now for 13 days. His symptoms are greatly reduced. Very few tics. Still urinating fairly frequently during the day but less, and only once at night. Separation anxiety is much improved. Checking behaviors I would say are 90% reduced but is still doing a little checking in the bathroom, bedroom before bed and if he wakes during the night. The Cefdinir will last another seven days. I haven't spoken to the pediatrician recently. She was annoyed when I spoke to her about a week ago about what the follow on treatment should be. I don't think she believes there should be a follow on treatment. In her initial diagnosis she said he should be 50% better in a week and 100% better in two weeks, end of story. Not sure where that belief came from but it would be nice if it were true. I am scheduled to do a phone conversation with Dr. K several days from now and we have an appt. to see the Pschyiatrist I mentioned in the middle of June. Not sure where to go from here. I imagine we will go through with both appts. and then pick one of the two's course of action. Another question. I've read Dr. Sweedo has been following her PANDAS patients post treatment, some of them for over ten years now. Anybody know how they are doing?. Thanks, Alex
  20. Hi all. I mistated the antibiotic dose for Beth Maloney's son. Worried Dad had it in one of his posts. It was 2000mg of Augmentin a day for a year and then 1000mg a day for the next three years. Alex
  21. Hi all, I am a new member here. I have been reading the posts for a couple of weeks and have learned at great deal about PANDAS and felt that it was not fair to gain so much from the discussions without adding our own story. My son was 9 years, 8 months old in early April when he developed a fever/sore throat that persisted for five days. Did the quick strep test and it came up negative. On the fifth day of the fever, my son, who up to that point would maybe urinated three times a day, began going approx twice per hour and would wake frequently at night to go. He also began having a frequent dry cough, that a psychiatrist later identified as a TIC. Additionally he started having extreme reactions to minor issues. An example was a half hour crying and screaming fit over being asked to put his book down while at the dinner table. These behaviors continued for over a month with no other symptoms that we were aware of. About a month later, on the weekend of May 9, 10 we noticed a few odd checking behaviors but didn't think much. On the night of May 11 he went into the bathroom before bed and spent the next twenty minutes lifting the toilet lid and staring into the toilet over and over, looking down drains, behind shower curtain, looking up and down the trim on the doors, etc. Also got out of bed repeatedly to rub his bedpost, look behind bed, etc. He did this four more times that night when he woke to urinate. We brought him to our pediatrician the next day. To what we realize now is her great credit, she took note of the fever/sore throat the previous month and said she suspected PANDAS. She had blood drawn for the ASO test which when it came back a few days later, showed elevated antibodies indicating a recent strep infection. She also put him on a five day course of Zithromax. My son showed marked improvement after three days but still had some symptoms. On the 8th day after starting Zith, three days after stopping, the behaviors returned full force. The Pediatrician put him on Cefdinir, 7ml once per day of the 250mg/5ml solution. So he is getting about 350 mg of the Cefdinr per day. He has shown improvement but still doing some checking before bed and when he wakes up at night, and is still urinating and coughing at the same level. While this was going on we had an appt with a Pediatric Psychiatrist who believes in PANDAS and used to have an office next to Dr. Sweedo. Although she believes in PANDAS, she follows the NIMH guidelines, a course of antibiotics if the child tests positive for strep along with Cognitive Behavior Therapy, and possible psych meds if things don't improve. We had a great conversation with Beth Maloney, the women who wrote a book called "Saving Sammy", which is coming out this fall ,about her sons battle with PANDAS. Her website is www.savingsammy.net if interested. Sounds like he went undiagnosed for several years. When diagnosed he was prescribed a high dose of Augmentin for a month with a continuing lower dose after that. I believe he was post puberty when he took the Augmentin. I believe he had a few ups and downs after, but is now, according to Beth, 100% recovered, no OCD or TICS and is starting college in the Fall. We made an appt with the psychiatrist who treated her son, an OCD specialist out of Mass General named Dr. Geller, who also has endorsed her book, which makes me assume that he agrees with the treatment Beth describes in the book. He is only excepting patients in his private practice which isn't cheap and doesn't do insurance. You do get a receipt for payment which shows the diagnosis codes and we believe our insurance, military, is going to cover. So far all we have done is a phone interview with one of his assistants. He is supposed to get back to us soon to schedule an appt. I have also touched base with Dr. K out of Web Pediatrics in Illinois. In our correspondence he said he believes that antibiotics are a short term fix at best and that if it is PANDAS than IVIG is the way to go. Going to set up a phone consultation with him ASAP. That's all I can think of right now. My questions to you all going forward are these. Has anybody had any luck with Cefdinir? I here a lot about Zithromax but not much about Cefdinir. Also, with IVIG, Dr. K's website claims that it is a cure for many/most but in reading the posts here I see a lot of mixed results. Anybody know the statistics? Thank you all in advance. Alex
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