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Everything posted by sww817

  1. Just to chime in on the "waiting".... It is not nearly as clear with the kids that are not sudden onset and / or that are affected at an early age when the symptoms can be misread as developmental. Add that to the new developments in PANDAS research and it becomes very easy to be mis-diagnosed. The residual issues also cause a challenge because these kids do not always return to baseline and there comes the question of "normal" OCD and anxiety. Trust me... It is not always as "easy" to see on the outside. I definitely relate to momwithocdson... My child is similar and many years younger and we still are searching for the right answers.
  2. I think you will get a lot of informative responses to your post. My thought would be get him on another abx if you can get it. The response he has will be benefitial to Dr. M. Perhaps even more so that "seeing" for herself. As we all know, sometimes these issues pop up at times other than when you are sitting in a dr's office! So it would probably be helpful if you can get him the abx and document thoroughly the changes you see in him before your appt. I can't help much with your other questions. We are actually about a week behind you seeing Dr. M also. But we are more years into this and I don't have the answers I wish I could give you! We definitely are PandaX as well and I think it makes things more complicated. I am interested to see what Dr. M thinks. Good luck! I hope you get some answers.
  3. This is good news. Although my son's cam k number is the ONLY thing that makes me doubt his diagnosis. He was in normal range even though he has a classic presentation. I have often wondered though how the whole PITANDS thing figures into the cam k numbers? I know he reacts to more things than strep... but he does not show any indication of lyme on western blot. Except that band 41 that "almost everyone shows" (as I have been told). Anyway... still great news that this will be more readily available!
  4. I would try the doctor that is going to pull the tonsils like the others suggested. Our ent did not find it overly unusual to have antibiotics before the surgery but he is a little mire progressive. If that doesn't work, you could try a phone consult with Dr. T. I know you have an appt with Dr. B scheduled but I personally would not pull his tonsils without the abx. You can find plenty of horror stories about flares after the t&a and also some that had improvements. I wouldn't panic over the stories... But get the abx first. It can't hurt and it could head off a problem if there is strep released.
  5. Interesting post. I do not have it but my husband developed it last year. My son obviously had strep at the same time since his titers were elevated a couple of months afterwards when he started having an episode and also had the flu. I did not think about the carrier aspect. I will have to put that on my list of questions for my next doctor appt. I might also see if I can get my husband to run his titers so we have an idea.
  6. Philamom- Calms Fort'e 4 kids was suggested to us by our sensory OT. She knew we had sleep issues and she had another mom who praised it. It had absolutely no effect on my son. I was very hopeful but I guess it just depends on the child. I have heard mention of 5htp but have not tried that. Also does anyone use valerian root?
  7. Interesting that you posted this as it has been on my mnd this past week too. My son takes 2mg of sustained release nightly and has been on some dose ranging from 1-3 mg for about 2 years I think. Last week he became sick with a virus and the melatonin was not needed since he was worn out and in bed much earlier than normal. When the virus was gone, I started wondering if I should just keep him off since his sleep patterns had gotten so much better over the past month or so. What I saw was a very hard time falling asleep and a much more restless sleep for him. So I decided to put him back on so that he can get the sleep his body needs. In all fairness, he may be having issues resulting from the virus also but either way, he needed it for better sleep. I do wonder if anyone uses any other supplements that are helpful for sleep? I feel like we need something if we stop usng melatonin to get a quality sleep and stop the restless patterns.
  8. My problem right now is we will all be in fl for our appointments. All includes my three year old ( who just tested positive for strep!!). I just think it might be better for them to stay at the hotel. We are traveling from NC so there will not be any extra hands.
  9. I am just curious who all you take to the doctors appointments. In the past, sometimes my husband and I both go and sometimes I just go with my son. I think it is benefitial for my husband to be there and hear the doctor first hand though. Right now I am trying to figure out our next appointments with Murphy and Storch. I don't know if I am going to be able to coordinate for both of us to go and I am kind of worried about that. So I was wondering, how do you all handle the appointments?
  10. I saw that quote and almost posted it here as well. Love it! Especially being one of the Moms that constantly hears that is not our issue..... I did not see the show so I do not know. I just saw it on the web site. But typically I think it usually goes with a story on tv when it has that Good Morning America logo beside it.
  11. jasimon2- I am not in Charlotte but I think there are several NC people on here. So I wouldn't be surprised if you hear from them. I have heard of Dr. Corbier on this board I believe as well. Good luck to you on this journey. This board is a GREAT place for information. There are so many people on here with lots of different experiences that are willing to share so much!
  12. Thanks DeeDee. I am going to try a local CBT (left an e-mail) and see how that goes. If I can determine that this is OCD, I would think an intensive program might be benefitial. But I can get started a lot quicker with a local person and see if maybe we can just tackle it that way. Was Storch's program helpful with your other child? Thanks for the advice from a parent that is farther down the same road. It is always very helpful and I take all of it to heart!
  13. Just saw this on the front page. PANDAS story with NC family and Dr. B. Looks like it might have been a Good Morning America story? Is the mom on this site? We are in NC too. http://abcnews.go.com/Health/pandas-strep-throat-trigger-obsessive-compulsive-disorder-children/story?id=14668292
  14. I had forgotten what a wealth of knowledge this board is! So I have another question from your experience. You know how they say urinary frequency is a PANDAS sign... is this frequency with actual output? Or is more of an OCD symptom with going frequently but not really having a full bladder? I know when we are in full crisis mode we will often see a nightime acccident or two (or naptime when he still took naps). But I am unclear about it in general. My ds went to the bathroom four times this morning before school but he actually needed to go. His symptoms had quieted down I thought, so I am curious. There is definitely plenty he could have been exposed to but I am hoping this is just a fluke.
  15. Thanks for the info. It is good to know I am not alone in dealing with these issues. It is tough though when most people just think picky child but I know it goes deeper. I cannot even bribe him with anything (Other issues he can be bribed when not in crisis mode). And I know he wants to eat these things for the bribe. He will get himself all ready to do it and then when it is in front of him, he just won't / can't. He has mentioned something about not eating animals ONE time. It was a passing comment and I have tried to dig deeper without putting ideas into his head... in case he was not actually thinking that. I am not prepared with how I would react to that. And I would be 100% fine if he did not want to eat meat... but he also does not eat cheese, milk, peanut butter, nuts... all of the typical meat protein substitutes. My only protein sources are pastas, the little meat he eats around and protein cereal bars. Frustrating... plus he is small for his age... although he is strong so he is not truly malnourished, I suppose. Thanks for the help though. I am going to call a CBT therapist I found that is about 45 minutes away. I would love to try Dr. Storch's program but that will take some work if we could even get him in. We did get an appointment with Dr. Murphy in November and the food issues will be at the top of my list. But I think I will go ahead and see if I can get in with the local person. Apparently she is on the IOCDF committee with Murphy and Storch so she should know a little about PANDAS and the residual effects hopefully.
  16. I have heard some talk about OCD revolving around food. I understand this if there is a fear of contamination. But is there any other way that this presents? I have an extremely picky 6yo. I always assumed this was sensory issues but I am totally unsure. He is not very verbal about WHY he doesn't want to eat things... just that he doesn't want to eat them. Meat and proteins are my biggest battles. Right now he asks for a chicken sandwich regularly but will eat around the chicken and does not want to eat the "white" (it is fried). He will eat some of the white with the brown... but not if he can see it. He also does not want meat in his spaghetti. If he sees it, he will not eat it. Sometimes I say it is tomatoes and he will eat it. Other times, he spits it out. I was just wondering how OCD presents with other children if they talk more about why the won't eat things? And on a sidenote, I am wondering is an intensive CBT type program would be benefitial for a child like that. I can see when he gets "stuck" but he is not very verbal about what he is thinking. Do you think a therapist would be better able to get to the reasons why?
  17. I am curious about the opinions or experiences of your children with the flu vaccine? I am clear that we should stay away from the mist... but what about the shot? My son's last exacerbation was last year from the flu that progressed to bronchitis. I would love to avoid it this year OBVIOUSLY! But I am not sure what the experience is with the shot version (and I cannot search for "flu"). So I am asking for opinions???
  18. I just came across this thread looking for something else and am sitting here with my mouth hanging open! I did not know this about PANDAS children and activation of ssri. I have been told multiple times that my son is on an extremely low dose of Prozac and typically they would not prescribe that low- but if I thought it was helping to continue. He also went bonkers on the full dose of zoloft that we tried first! This article just hit me upside the head. Funny how I find these little tidbits on this board! I was actually wondering if it would be of any benefit to take my son off the ssri before he has any more appointments? I am hoping to get an appt at USF with Dr. M and hopefully eventually Dr. Storch for his program. Anyone have any experience with whether they would need / want to see the child at true baseline? Not that I would want to put him there unnecessarily...
  19. Well if she agrees to see us I will let you know how she schedules us ongoing. I would prefer to see someone knowledgeable in person but also have her possibly consult with my local doctor for any urgent needs. We will see... airial95- I think you said your child is pretty young. Did she put him on any medications like an ssri? Just curious.
  20. So interesting. My son has very low ability with visual perception. As I understand it, he cannot copy patterns, shapes, pictures by looking at them. That would apply to letters also. But he tests very high on putting together puzzles or duplicating patterns with forms. Hmmm.... Interesting!
  21. Thanks dcmom. We do not have an appt at USF yet. Fingers crossed. I requested Dr Murphy and did the intake questions and sent documentation today. I am also hoping to maybe do the program with Dr Storch at some point. Right now I am just hoping Dr Murphy will see us!!!
  22. smartyjones- I related pretty well to your post. We are three years into exacerbations and probably 5+ years of symptoms that went unrecognized (he is 6) as we chased every diagnosis on the planet. I too have a "just right" ocd child that does not entain much more that it is just not right! Life can be frustrating and I definitely walk the line of accomodating to avoid a meltdown (I think I personally do not push enough). And we too are now in the area of daily symptoms that could be from illness or from learned behavior from my accomodating him. Anyway- we too suffer from dysgraphia. It is tough and has been a struggle for my son who would note that other children could write and draw better than him. Plus we then deal with the flip side which can be an ocd-like need for a perfect picture- which sometimes is really good! But getting to the end result can be hard. I see the definite ebb and flow of handwriting skills which I presume relate to his illness and immune system. I did want to ask who also had a child with dyslexia? We suspect that my son might have this and it does run in our family on both sides. When I did the intake information for an appointment yesterday at USF they asked about dyslexia and if he had been tested. Is this something common in PANDAS children? Has anyone heard this?
  23. Thanks Burnell! You have definitely seen the good ones. I personally have a lot of respect for both Dr. T (I have only done phone consults) and Dr. L. I think they have both led me down a good path now that they know more about PANDAS. I will say my first round was not as great... but they were still learning like the rest of the world! My only goal for a switch is to get help with a more comprehensive plan integrating the therapies. I think Dr. M might be good for that. Can I ask why you said you were done with her after two visits? I know every story is different but I am just wondering if her treatment plan did not match your hopes? Or if she was unresposive? Or something else? Feel free to pm me if you would like. Thanks for the response!
  24. I have posted a million times last few days. My son started acting strange last Monday. Thursday I found out strep was in his school. His grade but not his class. Went to ped for culture. I assume it was negative. Haven't gotten that answered yet! But he wrote me a rx in case and I went ahead and started it anyway. I thought it could be somewhere other than the throat. So right now he is on 500 mg Augmentin 2x per day. Oh and he is small. This is a treatment dose and then we will roll back into Dr L's rx of preventative strength 250 mg 2x per day. We were not on that before. Shame on me! My question... 500 rx is for 10 days. He is not in full blown exacerbation but still seems a little off to me. Should I call Dr L to get the 500 extended for longer or would 10 days and then maintenence be enough? We have always been behind the exacerbation so this is new for me to be dealing with rx during the symptoms. Thanks for any info.
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