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Everything posted by thereishope

  1. If you would like your support group listed on PANDAS Network's website (www.pandasnetwork.org), please list the city and state or area and contact info such as an email address. Some people prefer to keep PANDAS emails separate from their private email and create an email address soley for such purpose. That is up to you. Thanks!
  2. My son did get back to baseline and has been in full remission since for about 20 months. All I can say is it can be a long recovery. There were times when he was better then he would go ahead and do something that would positively surprise me. I didn't realize there was still a lingering apprehension about something. For some kids, I think there can be residual symptoms that linger but do not have have to be permanent. There just becomes a shift when you as the parent goes from waiting for the remaining PANDAS symptoms to fade, to tackling them head on. That's at a time whne you feel your child is stronger,reasoning has returned and you as the parent has enough strength to do that as well. If your child's original onset was in March, it may seem like a long time, but it actually is not. Recovery can take awhile. If you continue to see some improvements, you're still healing. My son currently takes a prophylactic antibiotic (but is not necessary to maintain remission), a daily probiotic, a multivitamin, and Omega 3 through fish oil. I continue with the Omega 3's even though he is well since he does get severe OCD in an exacerbation and I want the fish oil to remian part of his daily routine since if he gets sick he may refuse to add or change anything and I believe the Omega 3 would be beneficial during that time.
  3. Here is the archive video of Cunningham. I have no idea how long it will be available online.
  4. Coming up later today... Date/Time: Sun, 05/29/2011 - 12:45pm - 1:45pm Central Time Harry G. Hong, PhD, MD (China), LAc Summary: http://www.autismone.org/content/addressing-immune-malfunction-autistic-children Free Handouts to print is available as well. Addressing Immune Malfunction for Autistic Children Autism affects three major systems, nervous, digestive and immune system. Biomedical approach addresses nervous and digestive issues well, but lack of effective therapy to help immune malfunction such as allergy and hidden infections (Lyme disease and PANDAS), which have to be addressed for those who don’t respond to biomedical treatment well. This talk introduces an alternative approach to the immune malfunction with energy medicine, which is complementary to biomedical treatment for autism. Harry G. Hong, PhD, MD (China), LAc Dr. Harry Hong was trained with Traditional Chinese Medicine in China. He received his master and doctoral degrees in Biomedical Science in the States. He has practiced holistic medicine in the Chicago area for 12 years. He provides a one-of-the-kind holistic program to address immune malfunction and energy imbalance. He specializes in treating allergies, autism and autoimmune disorders with energetic therapies such as meridian testing, allergy desensitization, homeopathy and Chinese Medicine.
  5. He's eating at school, though? That's good. When my son wasn't eating and he finally started coming around,eating at school was one of the last accomplishments. Yes, pick your battles. I would leave some food at a reachable level for him and let him know where it is and if he wants something to eat, he can just grab it and eat it. My son went through a stage in PANDAS where he would only eat if no one knew he was eating and would eat in secrecy. Also, no one could prepare his food and he could only eat cold food. At one point, only cold, uncooked food was an option. As for setting you ERP back, was food issues being addressed already? If not, it won't set it back.
  6. FREE Live Video Streaming AutismOne/Generation Rescue Conference Goes Worldwide! Live Video Streaming of all Conference Presentations is confirmed! http://campaign.r20.constantcontact.com/render?llr=c4fgiadab&v=001jt41QcDym6DF5NPrQSBLET4qxZUtumVS4RuDpjPi30xTQMWbiNxmnjCXoEyW6he5Y4o2OMolF-LS6BhzuBv0EUWF0v6ODUu_dloZU5s1l6wCb3BSYU2HJ-4wi8ej2mf6aEPqTf6w-Vo%3D If you want to watch anything, consider getting a free account through Upstream ahead of time.
  7. Back in 2008 when we were first dx, we treated it episodically. He would only get treated with a regular script for the diagnosed strep infection. So, he was not fully recovered from an exacerbation when going off abx. So, in the case of my child, I see how his body needs time to heal and one can see the "raw" timeline of how a child may heal as there wasn't anything one can say helped him all along. In other words, all he got was a treatment script for strep (well, actually he did get a 5 day steroid the second time). This can be a lengthy explanation of how severe, the duration, etc was in my child who was treated episiodically. Even though he was then able to maintain remission and be strep free without a prophylactic, I wanted one. Why? My stress level was over the top, he has two siblings that are asymptomatic to strep and he goes to public school and is currently in the first grade, an age where classmates still cough all over and sneeze without covering with hands. I had to give him a fighting chance of not contracting it. I would type more, but gotta go.... Vickie, My daughter has remained strep free on the ABX. SHe was having a few months of exacerbations, but then I found that I had a high ASO. I got treated and she is doing quite well. I am struggling with taking her off completely or tapering the dose. Dr. B felt it was necessary that she be on the prphylaxis for on year solid and we are at that point. Does anyone just treat the exacerbations when their child responds favorably to the ABX? In other words, episodically. My daughter has, in the past, gone without ABX for nearly 9 months in remission w/out ABX & was strep/PANDAS free until dx with strep (that was Summer 2009- spring 2010--she was 4 1/2- 5 yrs old). Prior to that she was on the ABX on and off, just treating it episodically, but with each backslide she would have increased symptoms and new behaviors. I fear that not having her on anything may possibly lead to more significant problems if she contracts strep, but in the past treating her with Clindamycin has been successful in erradicating it. We have not found Zithromax to be very helpful to reducing her tics in the past. Also, she get significant discoloration on her teeth from it, requiring us to get cleanings every 3 months. Wondering if anyone has had any success with Augmentin or some other penicillian at a dose of just a few times/week?
  8. When you say what is the lowest dose working for others, do you mean who have been strep free or of who has been antibiotic dependent to maintain remission? You may also want to know what antibiotic has worked for their child when their child had a known strep infection since that may help explain why a specific antibiotic as a prophylatic has worked for them. My son is in the minority and strep has cleared with amoxicillin. He currently takes pen vk 250 two times a day. However....he also remained strep and PANDAS free for almost a year without any antibiotics before we were able to find a local doc to give prophylactics. He has also had tonsils and adenoids removed. We did recently had strep in our house and my PANDAS son remained strep free and PANDAS symtpom free on the pen vk. When strep was in our house, all three of my kids, inc PANDAS son, went on treatment dose Omnicef for 10 days as a precaution as not to play pass the strep. My PANDAS son is NOT mild PANDAS. His symtpoms do get very bad when he has strep. My son is not antibiotic dependent to maintain remission.
  9. Here are some studies you can present to her in regards to penicillin. To date, penicillin has killed strep in the petrie dish, but in the human body, it doesn't. Don't feel odd, bringing articles and studies to give to the doctor. It's less footwork she'll need to do. Amoxicillin Failure in Strep http://www.entrepreneur.com/tradejournals/article/169459644.html Meta-analysis of Cephalosporin Versus Penicillin Treatment of Group A Strep http://pediatrics.aappublications.org/cgi/content/abstract/113/4/866 Group A Streptococcus and its antibiotic resistance http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2640020/
  10. Well, I find myself sitting here with my fingers on the keyboard trying to figure out what to type. I see the word "strength". All parents on here are strong, whether they realize it or not. Feeling helpless, crying, feeling like you're mourning the loss of your child is not weakness, it's normal and expected. But when you choose not to walk away, not to abandon your child just because you're tired and overwhelmed...that's strength. Does it get easier, honestly, that's not an easy question. Maybe the answers to type or cite flow easier, but it's also becomes harder in that you know what your child may need and being scared they may not be able to get it. It's scary if they are better and you fear you will lose them again. I guess your life just changes. Right now, as you wait for lab results, you feel you are in limbo not sure what you're suppose to be fighting. It's a day to day struggle. You mention the return of compulsions, I would ask how bad they are. If he could have had residual OCD all along and it's taking back hold of him. Have you learned any coping skills for OCD? How fast is it all coming back? Also, how is the health of the rest of the family. You could test everyone else to see if he's reacting to some type of exposure while waiting for his results.
  11. In most ped’s offices, penicillin (pen) and amoxicillin (amox) continue to be the first choice of antibiotics given for strep infections. However, most PANDAS parents have learned that they also have high failure rates of eradicating strep so they do not even take the gamble to see if it might work. Time of healing is important in PANDAS and we just don’t have all the time in the world to experiment with things that have high failure rates. Now some PANDAS kids do get better on amox or pen, but it seems that they are in the minority. Then there are some kids that improve on pen or amox at first but then dramatically backslide around the two week mark because it didn’t fully work. Overall, the two antibiotics that seem to have been the most useful for PANDAS kids are Azithromycin and Augmentin (some need high dose Augmentin). Some also go on Omnicef or Keflex. Overall, there is not a cut and dry magic answer for which antibiotic is the best for a child. As for the sequence of antibiotics your child was prescribed, I haven’t heard of that. I would think a they’d start with the stronger antibiotic first. Also, as for the time when it’s a one dose a day of pen…that’s not good. Penicillin needs to be dose twice a day spaced out equally due to its half life.
  12. I had a spinal tap done before but I was 18. I did have to stay still laying on my side maybe with my legs pulled up in a fetal position. Someone would definitely help her stay still.And there was pressure when they actually did it. As for the risks, that's something I would discuss with the doctors. I think any procedure has some risks. Hopefully, some of the other parents who have participated in the study will contact you with their personal experience. I did hear from one mom whose child participated and she said everyone there was very nice.
  13. First, I'm sorry about having strep again. Second, thank you for the update, very informative for me. I wouldn't have known the Omnicef couldn't reach that strep. I'm glad the dr didn't just say it was a resistent strain but explained it.Please keep us upated on how this nasal antibiotic works for him. Cuirous if the topical antibiotic in the nose is your idea or if the dr suggested it for those "just in case" moments? Buy some xylitol nasal spray, that may help too.
  14. Welcome. I'm looking at your timeline...did you test your daughter when the friend had strep? The UTI symptoms you refer to, assuming you mean things frequent urination, is a symptom of PANDAS. While deciding to see a specialist or not, you can take the whole family in for strep tests (rapid, culture, maybe even blood work) even if they do not have symptoms as exposure to strep can worsen symptoms as well. If that little girl who had strep is a close friend to your family, you could ask the mom if she could take her daughter in for a follow up to make sure the antibiotics cleared her daughter too. As for the doctor mentioning yeast, well, yes it could possibly be part of the equation but probably not the whole answer. For that, you could give your daughter a probiotic daily. She may also benefit from Omega 3's and a good multivitamin. Kids, or I should say people in general, can benefit from probiotics even if they do not have any existing yeast issues. Here are some useful links for you to read... PANDAS Fact Sheet http://www.latitudes.org/forums/index.php?showtopic=6265 PANDAS FAQ http://www.latitudes.org/forums/index.php?showtopic=6266 Signs of OCD in a young child http://www.latitudes.org/forums/index.php?showtopic=6153&hl= PANDAS Flowchart http://www.latitudes.org/forums/index.php?showtopic=6688&hl= It seem like a lot but it may help answer some questions you have or lead you to others.
  15. A very useful website/organization... PANDAS Network http://www.pandasnetwork.org PANDAS Network is also on facebook http://www.facebook.com/pandasnetwork
  16. May 2011 PANDAS Network.org newsletter... http://myemail.constantcontact.com/New-Studies---Exciting-Accouncements-from-pandasnetwork-org.html?soid=1103470649803&aid=SjHt1ahkGDg
  17. Interesting question. My answer.... No. Because on the flip side, do you want to gamble that if you have a flare up, you won't be able to get it under control and it remains. I can't look at my child and say, 'Okay, let's try this. It may throw you into complete insanity. You will live in fear, have enormous anxiety, and perhaps want to end your life, but it might, just might, be only one last time".
  18. Yep. I've had kids cry on the eve before their birthday, but for mine it's not a fear of getting older but wanting to just stay the age they are now. To cope with that, you say...you're not only 9 years old, you're also 8, 7, 6 etc.
  19. Here's a few to start you on. What other symptoms is she having. Perhaps a "symptom specific" study or article would help.Is she on abx? if so,which ones? what other meds is she on? What every psychiatrist should know about PANDAS: a review (2008) http://www.cpementalhealth.com/content/4/1/13 PANDAS Fact Sheet http://www.latitudes.org/forums/index.php?showtopic=6265 If you want a more recognized referral for a fact sheet, then the IOCDF one can be used, but it's not as complete http://www.ocfoundation.org/uploadedFiles/MainContent/Find_Help/PANDAS%20Fact%20Sheet.pdf A Way Forward http://pandasnetwork.org/wp-content/uploads/2010/12/JrnlChildPharma-LeckmanKurlanMurphy1.pdf Good article explaining PANDAS in layman terms http://draylawilson.com/strep-infection-associated-with-adhd-and-autism/ For those doubting PANDAS existence if you should encounter it... Antibodies to Strep Throat Bacteria Linked to Obsessive Compulsive Disorder http://www.mailman.columbia.edu/news/antibodies-strep-throat-bacteria-linked-obsessive-compulsive-disorder-mice NIMH Director’s Post http://www.nimh.nih.gov/about/director/2010/microbes-and-mental-illness.shtml?WT.mc_id=rss Tel Aviv Study,but this is just an article. It hasn't been published yet. http://www.aftau.org/site/News2?page=NewsArticle&id=13179
  20. Some kids are sensitive. My older son went on 10 days of Omnicef (dosed twice a day like your son), I gave him Pearl probiotics spaced out and he still had occassional stomach issues and I had to increase the probiotic and give him yogurt in his school lunch.
  21. How's your sinuses? I had the same thing as you with the white spots, negative rapid and culture, but abx made it better. They thought I had an infection in my sinuses and the white spots were from drainage.
  22. If he's away on a trip, do you trust those with him to dose him correctly and at the right times? Is he taking a probiotic as well, spaced a minimum 2 hours from antibiotic? Is the brother that tested positive with him? Perhaps his strep wasn't cleared. Now, for another reason...yes, travelling can cause an increase in symptoms. Just the excitement, maybe nerves, diet, it can all effect it.When is he expected back? If he can take Ibuprofen, it something to consider until he comes back and things get back into routine.
  23. It seems that different ENT's do different things. Many ENT's will treat PANDAS kids the same as non-PANDAS in terms of pre and post op procedures, but as you know our kids are just different wth different risks.I don't think there is a standard that all ENT's follow for abx and t and a. It varies. I've encountered some parents who didn't get any abx after surgery. Whereas, I think mine did abx 5 days before surgery, 3 days after. Some PANDAS kids will have a worsening of symptoms after surgery. Some think that may be due to exposure during surgery. So, some will request IV antibiotics during the procedure and full strength abx for a week or so after. Some PANDAS parents will also request that the tonsils are biopsied to see if strep has been hiding in them.
  24. You can get multiple answers across the board here for this one. My son had t and a at 5 1/2 years old. He healed fine. Never complained. He even ate chicken nuggets that night after surgery. The ENT told us not to baby his throat and it would heal faster. However, I know others who had a harder time healing. Are you getting abx pre, post and/or during surgery?
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