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Everything posted by saidie10

  1. Both my DS7's Rapid Strep and Strep Culture were negative (he had tonsils removed in August 2009). Problem is that other DS5 tested + for Strep and at the same time our suspected PANDAS DS7 had symptom exacerbation. So my question is, can he still have PANDAS and have symptom exacerbation because of brother with Strep or would he have to be + for strep as well for his symptoms to be from the strep and in turn be a PANDAS like reaction to strep? This is all so confusing! Thanks in advance for any advice!
  2. I am envisioning the same paranoia for our family if and when we get a diagnosis! So sorry it is all so frustrating. Hope you get the answers you are looking for on the plasmapheresis!
  3. I am envisioning the same paranoia for our family if and when we get a diagnosis! So sorry it is all so frustrating. Hope you get the answers you are looking for on the plasmapheresis!
  4. So I posted a couple of days ago about my DS5 who up until now we were not concerned about PANDAS testing positive for strep on Tuesday and coincidentally seeing an increase in symptoms in the PANDAS suspected DS7 over the last week. We drew blood yesterday and tested ASO and Anti-DNase B and ASO came back at 400, EXACTLY the same as it was 6 weeks ago? Still waiting on Anti-DNase B results. Neurologist says "no drop or rise, but I guess it is good it is consistent"...what they heck does that mean? She said that the Anti-DNase B would be the more telling number for us in conjunction with an exacerbation in symptoms. Is this true? I am just praying the number is up from 561 which it was 6 weeks ago. I know numbers may not rise in some kids but I just need something, anything to have more proof or evidence that we are going through what we are going through. I also told the Neurologist on the phone that my DS7 was also having chorieform movements (piano playing fingers when arms in front, eyes closed). She told me that kids with Tourrettes have chroeiform movements too. I just really feel like she is trying to steer me in another direction even though all the signs point to PANDAS! My son suffered from strep after strep, after strep last year during the same time ALL of his symptoms started...tics and definite sudden onset OCD. Since his last infection and having his tonsils removed in August of 2009 we have seen a serious improvement in behavior, almost no ticcing for days, even weeks at a time, etc. There is no history of OCD or Tourretes on either side, yet both Grandfathers had RF. The signs are all there!!! She just keeps saying we have to cross all our t's and dot all our i's. I am tired of practicing grade school grammar! Let's get serious! Do you guys think it might be time for a second opinion? Thanks for any advice
  5. Hi there from a worriedmommy too! I wish I had answers for you on the titers. We are still trying to figure these things out on our end too. I believe that elevated titers and DNase would indicate exposure to strep at some point in the recent past? According to my Neurologist (and I am confident other doctors may say something different) it can take up to 12 months for titers to drop to normal after an infection. In a perfect world, we all would know what our children's normal titers were before any exposure to strep and then we would know how high they got during an infection and then we would also see it rise during an exacerbation in symptoms. Then of course is the fact that some children's titers don't rise with symptoms even though they suffer from PANDAS! Oh if only in a perfect world! Hope you find the answers you are looking for. I am sure others on the board are much more versed in all of this as I am very new!
  6. Welcome and I to was so relieved to find this site...it has been a big source or comfort and help! I hope you find the answers you are looking for and I hope your son improves. I would say it definitely sounds like there is a connection with the sudden onset of symptoms along with him testing positive for strep!
  7. Made it to the lab just in time today to have DS's blood drawn for ASO and Anti-DNase B. I think Neurologist thinks I am loco! Oh well. I am confident we are dealing with PANDAS and I am not backing down DS has been regressing quickly in the last few days with very aggressive and volatile behavior which reminds me of last year when he was having all the strep infections! He started with some tics again so I know something is going on! Younger DS who tested positive for strep this morning is starting to do some weird things so he is on my radar now! I am determined to get answers and help these boys! I will not stop!!!
  8. Hi! This is such a great day in our house! Anyone else get excited and have a Tom Cruise couch moment when another child tested positive for strep while the possible PANDAS child is having an exacerbation of symptoms! That was what it was like in the doctors office this beautiful morning! So older DS7 has been going through the motions to try and figure out if he has true tics and true OCD or strep caused tics and OCD for about a year and a half. FINALLY after about 4 days of noticing an increase in tics that had almost completely gone away over the course of the last 10 months (since his tonsils were removed) an increase in irritability, quick to anger, sleeping problems and very easily frustrated (his OCD is being controlled by zoloft), our younger DS started running fever two days ago and began complaining of an earache last night. Brought him to the doctor and he has an ear infection and she said his throat was a little red and I said swab him for strep. I don't think she was going to, but she did and rapid came back positive! I am bringing older DS in this afternoon after school for culture and have a call in to his Neurologist to let her know what is going on. I would hope and think she would want to draw blood and look at his titers, right? We ran titers and Anti-DNase B about a month and a half ago and ASO was 400 and DNase B was 561. One more interested side note...of course we have been watching younger DS since all of this started with older DS. Well he did test positive for strep in February and since then I would say he has developed some funny finger stretching and nail biting which he has never had before. Could this be tics and OCD? Should we be talking to the Neurologist about him as well? Thanks for any advise!!!!
  9. Thanks for sharing! I will keep fighting too for my child just like you did! I can't believe the doctors at Children's would not want to follow up so they could learn more themselves. Truly disgraceful!!! Good luck and I hope her prognosis continues to be a good one!
  10. Sorry you are going through this. I am sure you worry constantly about your DD since your son does have PANDAS. I am constantly watching my DS5 now that I know we may be having a diagnosis soon of PANDAS for my DS7. I feel for you! I am sure you analyze every little thing she does. My DS5 had strep too about 8 weeks ago so I am really watching him now! He has this hand tic thing he has been doing for a while and it seems to be getting worse. Gosh I hate freaking about every little thing...it sucks doesn't it! I hope you get answers soon. Keep us posted.
  11. Congratulations! You were persistent in your fight and you won! Hopefully he will stick with you and become a true advocate to treat your child!
  12. Hello everyone. I am frustrated! I have approached the Neurologist about doing the following tests in addition to the bloodwork we will repeat on my son in late May (the ASO and the Anti-DNase and she just doesn't see the relevance of doing all this expensive testing. The tests I told her I had researched and with the advice of someone from this board these were the tests I had found: Streptozyme Mycoplasma titers EBV Panel Copper (serum) ceruloplasma titers Natural killer cells CD3-C16+CD56 IgG subclasses Subclass 1, 2, 3, 4 CD57, CD3, CD8 Flow Cytometry CBC Lyme Disease antibodies, IGG, IGM Western Blot Pneumococcal Antibody Panel Natural Killer Cell Functional Assay Lymphocyte Mitogen Screen ESR-Sed Rate CRP-C-Reactive Protein AP50 Neutrophil Oxidative burst So the Neurologist admitted she would not be able to interpret the results anyway because it is not her area of expertise and I said it is my understanding there are immune issues we should look at too since this is an immune disorder, right? And she basically said well then maybe you need to just go to an Immunologist then. She said that the PANDAS cases she has dealt with have only involved the ASO and Anti-DNase B and it has been cut and dry. I asked if she was currently treating any PANDAS kids and she said no not currently. I then asked her if we should also be at least running a Streptozine test and she said she had never done that test and I said well doesn't that test for an active infection and not just past infections and she said she was not sure and she would look into it and add it if she thought we needed too. Anyway, I just don't know what to do! Wait or not wait? He has very minor and infrequent tics which have progressively gotten better since his last known strep infection11 months ago and having his tonsils removed, but take him off the zoloft and the OCD comes right back so I know that if it is PANDAS, then the elevated antibodies are still negatively impacting his little body. We had talked about consulting with Dr. B but I just don't know if I should just go ahead and take the advice of someone from the board and just go see Dr. R (an Immunologist) in Dallas for a second opinion. I REALLY don't want to work with someone over the phone to treat him. So my question is this, are these tests important and valuable right now or only if his results are weird from the second ASO and Anti-DNase B? Thanks for any advice!
  13. Just proves to me that I AM MY SON'S GREATEST ADVOCATE, DOCTOR, ETC. I will not feel funny asking...NO TELLING the doctors what I expect them to do for my son. If they won't listen, I will find one that will! Thank you for sharing this families amazing journey!
  14. So sorry you are struggling with this. I wish you the best of luck and hope you find the help she needs.
  15. Hi Melanie! I sent my son's synopsis early last week to his nurse and I called to make sure she had it. She said it would take a while for him to get back to me but to call her and remind her to make sure she could put my paper in front of him at some point. I called this morning to add a few things to it and she did and said she would try and pull him aside soon to show it to him. Anyway, she called me back about 3 hours later and said he had reviewed it and would be willing to have a phone consult but hoped I could get more labs done before then. If you are not that far, schedule an appointment and go see him! Otherwise, call Stella his nurse again and fax her the information and follow up with her frequently. I am in Texas so the phone is what we will have to start with. Good luck!
  16. I spoke with Dr. B's nurse this afternoon and she said he read the synopsis and would be willing to help. He would like additional bloodwork done before we visit. I have approached the Neurologist here in Austin about running the tests we need to so we have more information to look at. We will see if she goes for it! Thanks for the advice and I am hopeful we are going in the right direction.
  17. Hello! I have sent a synopsis of our son to Dr. Bouboulis. Anyone else ever have a phone consult with him and what can we expect from it? Thank you!
  18. Thanks for the responses. I am knew to all of this and just trying to learn and gather as much information as I can. I will check out the older thread too! My son is currently in the beginning stages of possibly getting a PANDAS diagnosis. His ASO was 400 and anti-DNase B 561 at 11 months post last known strep infection. He is currently having mild ticcing (was bad last year during all the strep infections) and his behavior has improved a lot since then, but when we take him off the Zoloft, his OCD comes back quickly so he is still having issues and DH and I believe firmly that this is a post streptococcal disorder. There is no history on either side of Tourrettes or OCD but clear genetic predisposition for post strep disorders as both paternal and maternal grandfathers had RH as children. `````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````````
  19. Hi! Thought it would be interesting to see these numbers. Thanks for participating!
  20. Thank you for the response. Was your son strep asymptomatic or did you know he had strep at some point and how long after that strep was his ASO 244?
  21. Hello everyone. I am looking for any advice on who to bring my son to for a second opinion. We need a doctor in Texas. Below is a synopsis if anyone wants to take the time to read it and offer any advice! Thank you so much for any help you can provide! [Timeline of Coopers tics/behaviors and OCB Cooper started eye blinking sometime during late summer/early fall of 2008. This eventually went away. We attributed it to allergies or dry eyes. Cooper then started mouth stretching during late fall/early spring of 2009. This came and went for a period of time and we attributed it to dry lips and or cracked corners of mouth. This would get better and worse for several months. By early spring of 2009, the eye blinking came back. Cooper also began having head, neck, shoulder, legs, arms, finger and trunk tics. Some days were good, some days were worse. Between spring and summer of 2009, his tics waxed and waned and we definitely saw a change in Cooper’s behavior. He was more aggressive, quick to anger and easily frustrated. He would get fixed on something and get very angry and couldn’t let it go. He definitely seemed different than the child we had known for 5 years. He was also having a hard time with his handwriting, difficulty falling asleep and staying asleep. During this period of new tics and behaviors, Cooper had at least 6-8 positive strep infections (testing positive with a rapid throat test in the Doctor’s office). When we asked both Pediatric Neurologists we brought him to because of the behaviors and tics (one in San Antonio in May of 2009 and on in Austin in June of 2009) about whether this could be PANDAS as I had read about it online, and whether these behaviors and tics could be related to his repeated strep infections, they both asked if his behaviors or tics were worse during or immediately after the infection and if they got better with treatment. Honestly it was very difficult to know the timing as his strep infections seemed to be right on top of each other during the same period we were seeing all the new behaviors and tics. At the time we saw both Pediatric Neurologists, they also asked about OCB. We had not seen any behaviors that were obvious or that we could definitively say yes, that is OCB. But, on June 29, 2009, Cooper had a positive strep culture and within that week there was definitely a sudden onset of OCB. It was really bad and it seemed all of sudden that this came out of nowhere. It was bathroom related with the need to wipe over and over and the need to urinate over and over. I called his treating Neurologist and we started him on Zoloft. I had pretty much forgotten about PANDAS at the time since both Neurologists didn’t really see the connection. After the strep on June 29th, he had one more bout of strep in late July of 2009. As of that bout, he had been on the Zoloft for about three weeks. We also had his tonsils and adenoids removed the first part of August, 2009. Since August, his OCB’s seem almost nonexistent, and his tics have progressively gotten better and better and we now only have a few head and face tics along with the occasional trunk tic when he is in a stressful or excited situation. We have also seen an improvement in his behavior. So I ask, is his OCB/anxiety better because of the Zoloft only, or because he has not had any signs of strep; are his tics better because he has not had strep, or because we are just in a good period right now? Cooper has gone from an A student in Math to a C student and he really struggles in that area. Our 5 year old son is drawing better than him so I know he is not where he should be with that as well. Cooper was a very colicy baby along with having many years of allergy problems and chronic coughing as a toddler. Both his Grandfathers suffered from Rheumatic Fever as a child. I truly feel like we absolutely have to rule out strep as being the trigger for all of this because treating him for that is definitely a different treatment than if it is non infection related OCB, tics and behaviors. So where are we now? Really I just want to know if we are doing the right thing or should we be getting a second opinion. His Neurologist ordered the two standard bloodworks; ASO and Anti-DNAse B. This is the first time we have ever done these tests as his positive results for strep last year and the year before were done with throat swabs. We also took him off the Zoloft a week ago to see if the OCB would return and within a week they did so we are putting him back on the Zoloft (25mg) today at the direction of the Neurologist. We don’t have the results of the Anti-DNAse B, but his titer came back at 400. Although she said this is elevated, she said it could take him upwards of 12 months for that number to come down to more normal ranges. It has been 10 months since his last known strep infection. She said we should do bloodwork in another 2-3 months and see where we are at, keep him on the Zoloft and contact her within that time frame if anything rears its ugly head. Does this sound like a good course of action to you or should we be pursuing a second opinion? I have sent this information to both Dr. T, Dr. K and Beth Maloney author of Saving Sammy. They all seem to think this very well could be PANDAS. That being said, are we doing the right thing by sticking with the current Neurologists suggestion or should we be getting a second opinion? We are still waiting for the results of the Anti-DNAase B. Beth did send me a list of doctors in Texas, but we would no idea to choose! Any advice is appreciated! Cindy
  22. Thanks so much for the reply Gina. It does appear we have very similar situations!! Sorry you are going through this too, it is so hard isn't it! You just want answers. I have never liked the unknown and I don't like it now! Well I am hoping we have a plan, tell me what you think and any others with opinions, thanks. Spoke with the Neurologist this AM. We have an appointment next week. I am forwarding her all the information I am reading about on PANDAS and why I think it sounds like my son so she can take a look at all of it before our appt. When we go in, we are going to talk to her about weaning him off the zoloft and doing some baseline testing to see what we have currently going on with regards to strep since right now his tics and behaviors are not out of control. Then when he has a true exaggeration of symptoms, I gather that is the time to look again at the possible strep connection, right? I just really want to get him off the zoloft. Obviously if we find out down the rode that it can't be related and he needs medication for his health, we will do what we have to do for him, but I would be willing to try alternatives to these types of medications first. What do you think? Does this sound like a good plan so we can find out if there is a connection? I just don't think we can while he is on the zoloft, would you agree? Thanks so much and hope you find the answers you are looking for too. Cindy
  23. Thanks for the response. Right now his OCB is very under control but he is on the zoloft so I guess it would be hard to tell if he is having episodes of increased OCB since that is controlling it? I am so confused over all of this but my motherly instinct is telling me there is something to it. His tics like I said have been pretty mild for the last 6 months with only increased motor tics related to increased stress. He has had motor tics since eye blinking started sometime in the Fall of 2008. Towards the end of that year the other tics began showing themselves and got progressively worse during the winter and going into the spring months of 2009. During that time between fall 2008 and summer of 2009 is when he had all the positive strep cultures so you know we were continually treating with antibiotics. We went to the first Neurologist in June of 2009 about the tics. At that time we did NOT see any OCB. I asked about the PANDAS because of all the strep but they did not see a correlation. It wasn't until that strep infection in July that the OCB just seemed to show up, plus the fact that now I find out the frequent urination thing is common in PANDAS OCD freaks me out because that was his OCB. At the time though of course both Neurologists said, no they did not see a connection so I didn't even think twice about just putting him on zoloft. As for other behaviors, the poor impulse control and behavior issues in school and at home persist and of course some days are better than others. So many things I am reading about PANDAS just sounds like I am reading about my child though! Why would I do a culture first? Isn't the culture checking for an active infection, while the blood test is testing for antibodies? I am confused about that. I do worry about the timing for the blood test in that he is not exhibiting exaggerated symptoms right now, but wonder if his titer levels are elevated above normal since we still have the tics and these other issues. Thanks again for your response and any further help is appreciated!
  24. If my son has not had strep symptoms since his last bout of strep in July of last year (we had his tonsils out in August) and that was the bout where we saw the dramatic increase in OCB, could he still have elevated titer levels now (7 months later) that could indicate PANDAS? His OCB seems to be currently controlled with zoloft which he has been on since July of 2009 (or are his symptoms just less because the strep is gone?), and his motor and vocal tics have been very mild for the past 6 months or so with only occasional flare ups that seem brought on by stress. So basically, it was during one of his last bouts of strep (he swabbed positive 6-7 times in a 10 month period during which we were working with a Neurologist separately trying to figure out what was happening with our son and these new facial and body tics that had progressed from eye blinking to multiple complex motor tics and weird behavior issues) that we saw what seemed like exaggerated OCB. It was a dramatic bathroom urination frequency thing along with other germ issues that was crazy and the night before we started him on the zoloft he literally stood in front of the toilet for 3 hours saying he had to pee over and over again. He has also been dealing with attention problems, poor impulse control, hyperactivity, mood swings, is irritable, has rage behavior, sleep issues, difficulty with handwriting and we have seen his math skills decrease as the school year has progressed. I want to have his blood tested for these strep ?antibodies? to see if it is all his strep infections that caused the tics and behavior issues we are dealing with. His Neurologist did not think at the time that there was a connection between the two when we were trying to diagnose the tics and behaviors but that was before the OCB craziness. She wanted to know if his tics and behaviors wore worse or better during, before or after the strep infection and quite honestly he was having strep so many times that it all ran together and I really could not pinpoint that! It was not until I read up more on PANDAS and realized the crazy OCB started about 4 days after a positive strep swab that we could be on to something and may need to do this testing. Is it too late to tell by the blood work though? Thanks for any input! Cindy
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