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Everything posted by thereishope

  1. Alone we are Rare. Together we are Strong. Good job spreading awarenees, Emerson!
  2. Enough reflux can also burn the vocal cords and cause raspiness or a voice that sounds rather robotic.
  3. How does your child take all of his meds/supplements? If pills, are you confident he does chew or crush them between his teeth? My mother's vocal cords were temporarily burned or something from chewing certain meds that were not intended to be crushed.
  4. I think I'm starting to respond to posts a little too early this morning and my coffee hasn't kicked in, but I'll post anyway. If your child has a rise in titers, it does not necessarily mean they are a carrier, but it also does not mean they are not a carrier. It means they have strep somewhere. So, you want to treat it. Even if your child was a carrier, you should still treat carriers as well. Never leave strep untreated. Some docs are still old school and find this as a loop hole not to treat. If yours is one, find a different doctor. Now,if a person is asymptomatic (no symptoms), tests positive on a strep swab, it still does not mean they are a carrier. I say my kids are a perfect example of this since they are asymptomatic, test + on a rapid or culture, but will clear on 10 days of amox. Carriers are hard to clear and take stronger antibiotics for a longer amount of time. This is why it is important to retest people weeks after finishing antibiotics. Long story short, still treat your child for strep.
  5. First, I'm sorry your 2 yr old is sick. Has you PANDAS child been exposed to strep before without having an infection himself? As for the 2 year old, what antibiotic was he given? Make sure to go for a follow up strep test 3 weeks after finishing all meds and I would suggest taking everyone else in for a strep test as well.
  6. JAG, this is when you dig into the SLP skills of yours and think about those kids that are say 5 years old that have the speech equivalent of a 1-2 year old. You know it'll take work, but you don't think less of those kids (not saying you think less of your dd, but you know what I mean) and you know they can overcome their issues and get up to speed in due time. There are also a lot of free math websites she can go to. This may help "break up" doing worksheets sometimes. I think our school uses http://www.ixl.com/ That one you only get 15 minutes a day before you have to get a subscriotion. They also use www.funbrain.com. Finally they use www.studyisland.com but you may need a subscription for that, not sure. She'll get there. She's a fighter!
  7. Yes, in subsequent exacerbations, once you know something (strep) can be off with your child causing atypical behaviors, you see the early signs faster. A meltdown/rage was the first thing that set the red flag up for my son. Unfortunately, OCD did always quickly follow for him. My son had a timeline of continuing to worsen for 3-5 days after starting antibiotics before I would some type of improvement. And that with catching the strep within 12 hours of first "off" behavior. Amy, I do think some kids can eventually be strep free as some do go into remission without needing any antibiotics.
  8. You're great! If you want to write a letter to him, post it on here and get "virtual signatures" from parents, I will gladly sign it! When he did a twitter q and a awhile ago, he didn't get a lot of questions, in general, yet he never responded to my questions about PANDAS. I tweeted it multiple times when I realized he wasn't going to respond. No acknowledgement at all. I'm glad you were able to ask him in person where he had no choice but respond. But, yes, he needs some things clarified.
  9. So, you have a doctor that seems proactive in testing children for strep, but may lack in treatment. That's disappointing. I'm not sure how long Omnicef is prescribed for strep. 5 days does seems short. Could you just ask her to prescribe it longer, explaining how it is going around the school and you want to make sure his brain has a chance to heal before it is assaulted again? Agree with take the supplements she gives and tell her you will religiously give probiotics. As for antibiotics, it seems that Augmentin and Zithromax are the two most successful on here, but success is not limited to those two. Some do take Omnicef and I know a couple that also use it prophylacticly. I believe that Omnicef is the antibiotic Dr Murphy used/uses in her study. Simply, no two kids are the same. What works for one may not work for another. It is possible you saw better results with Augmentin than you ever would with Omincef. Again, every child is different.
  10. They do make probiotic juice, Good Belly Juice. I've only seen it at Whole Foods. You can also try Kefir which is similar to a yogurt drink. Will she tell you why she won't take the probiotic?
  11. It's seems you've been on quite the roller coaster ride! You talk about the doctor that actually wanted to help you and was interested. I always said I could undersatnd why docs don't want to take our kids on just for the challenge. I think most docs get comfortable where they are and lose that passion. I wish you nothing but the best, Emerson! Thanks for the update!
  12. Yeah, that's one issue I have with those walk in clinics by us too...they don't send out cultures. They only do rapids. Even if you want one, they simply do not offer that service. How's your kids doing now?
  13. With everything else, you don't need added stress. If you're worrying about it somehow affecting your child, just scrap it and start something else.
  14. The only way to determine if you're a carrier is by testing. Have you gotten tested for strep recently? You say you had irritability/rage after taking the remedy. Have you ever taken it before, have you ever had PANDAS PITAND like reactions to illness before? I don't know if homeopathic remedies would be strong enough for a carrier either. I would say if you suspect you're a carrier or if you suspect you have strep, to get tested. You can continue taking the remedy for now as some sort of protection or beginning of erradicating a possible infection.
  15. How old is your son again? If the OCD is telling him he cannot start the antibiotics until a certain date, what if you ask him if you can start a different antibiotic instead. You can still give the clindamycin and call it something else. Or tell him that you'll help him keep it a secret from his OCD and the OCD won't know he started it early.
  16. Abstract.Cannot get the full text. Maternal history of autoimmune disease in children presenting with tics and/or obsessive-compulsive disorder. http://www.ncbi.nlm.nih.gov/pubmed/20864184 Maternal history of autoimmune disease in children presenting with tics and/or obsessive-compulsive disorder. Murphy TK, Storch EA, Turner A, Reid JM, Tan J, Lewin AB. Department of Pediatrics, University of South Florida, College of Medicine, St. Petersburg, FL 33701, USA. tmurphy@health.usf.edu Abstract OBJECTIVES: A commonality across a number of pediatric neuropsychiatric disorders is a higher than typical rate of familial - and especially maternal - autoimmune disease. Of recent interest, a subtype of obsessive-compulsive disorder (OCD) and tic disorders known collectively as Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus (PANDAS) is believed to be secondary to central nervous system (CNS) autoimmunity that occurs in relation to group A streptococcal infection. Thus, we hypothesized that a sample of children with OCD and/or tics would have an increased maternal risk for an autoimmune response relative to population norms. We also expected maternal prevalence of various autoimmune diseases to be higher among those participants that met the putative criteria for PANDAS. METHODS: We examined, via structured interview, the medical history of the biological mothers of 107 children with OCD and/or tics. RESULTS: Autoimmune disorders were reported in 17.8% of study mothers, which is significantly greater than the general prevalence among women in the United States (approximately 5%). Further, study mothers were more likely to report having an autoimmune disease if their children were considered "likely PANDAS" cases versus "unlikely PANDAS" cases. CONCLUSIONS: The results offer preliminary support for hypothesized links between maternal autoimmune disease and both OCD/tics and PANDAS in youth. Further research is necessary to clarify these general associations; links to specific autoimmune disease; and relevance of autoimmune disease in other family members (e.g., fathers). Copyright © 2010 Elsevier B.V. All rights reserved. PMID: 20864184 [PubMed - indexed for MEDLINE]PMCID: PMC2991439 [Available on 2011/12/1]
  17. Did they send a culture out for your husband? My husband a couple years ago got a false negative rapid. The doc wasn't going to culture since my husband's an adult. My husband insisted...good thing.
  18. If you consider doing the blood test, ask what he plans on doing with the results. Also, will they be "on the side" or oficially be put in your son's med file.
  19. Even if there is that lingering doubt in your mind, I think people can learn from this board. Even if people are coming from different starting points, different triggers, don't know the diagnosis, we all have a common bond...something is wrong with our kids and we as parents want to make them better. We can lend each other support from a standpoint of each symptom and perhaps suggestions of how to cope or overcome, each question on medicine or supplements and we all know what it's like to see the child we knew disappear. In reference to this disorder, there is no cookie cutter list of things your child will have, what will get them better, how long it will take. What one experiences, another may not. So, if you are unsure, look at us at a starting point. You can still look at other boards and forums too. We won't mind:)
  20. It's not just wishful thinking! Good ideas start from that. Have you asked your ped what he thinks is the best way to "educate" other pediatricians in a way that they won't get defensive and be open minded?
  21. I agree with Nancy that if you find a pediatrician that is open to possibly treating your child or keeping them in maintenance, they often feel they need to refer to the main local hospital. My current ped spoke with a neurologist and I think infectious disease without my knowing when we had a discussion on prophylaxis. But the first step I suppose is to get that ped to at least look into it, read about it, and for God sake at least run a few tests! We still read about pediatricians who refuse to do strep tests upon request! That's just ridiculous. Every appt, I go armed with my papers in the event I need quick info to give. The doc will say they will do their own research, but you just don't know how much they'll look up or where they find their info. There are still hurtful articles and studies resurfacing and forever floating around the internet. It would be nice to have a trifold available in each examining room like they have for other illnesses. It may catch the attention of a waiting parent.
  22. I'm so glad you got you daughter tested. We're in the practice, one tests +, we all get tested. So...did you and your hubby get antibiotics?
  23. Glad to hear things are going well! May your son and family continue to find health and happiness.
  24. Welcome. I'm happy you were able to convince your doctor to put him on maintainance antibiotics, but he probably needs full dose, stronger antibiotics for a possible infection if he is still showing so many strong symptoms. If the current doctor you are seeing is not working with you on searching out the root cause or giving the right antibiotics for a possible hidden infection, search for a different pediatrician. I think a lot of times people forget that they do not need to stick with their doctor if the doctor is not willing ot help. You can change. Also, not many PANDAS kids respond to amoxicillin. Here is a link about the failure rate of amox http://www.entrepreneur.com/tradejournals/article/169459644.html It seems the two antibiotics that work for the majority of PANDAS kids are Augmentin and Zithromax.
  25. At least you caught it on a Friday instead of waiting and having the tell tale meltdown over the weekend.You caught it fast and let's hope it will be short lived.
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