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Everything posted by Ginger

  1. Hello Everyone, Just wondered if anyone has experienced a allergy to probiotics? I noticed about a hour after giving to my son his ears were bright red. Then he said his neck hurt. Then he got sick. He was perfectly fine after getting sick, and his ears were back to normal. Thanks, Ginger
  2. Hello Colleen, So sorry for what you are going through. It still amazes me that one day you can have a sweet, kind, lovable, cnnected child and the next day you have a angry, sad, disconnected child. I am with you I hate strep. Thought I would share with you our experience with T & A. My son is also 3, and we had his removed in December. This was due to so many strep infections, we felt this was our last resort. The procedure was much easier then we thought it would be on him, however about a week later he started his crazy behavior and we took him into his doctor. The doctor spent awhile observing him, and agreed he wasn't himself. Thought his anaolgy was pretty good " It is like there is a Rat in the room" (When he get's strep he can't sit still and is very disconnected) The rapid test came back negative, so the doctor decided to take some blood and run more tests. He called a couple days later and stated that he did find traces of Strep, but thinks we are getting a handle on it?? Put him on more antibiotics and low and behold I had my sweet boy back. Fast forward to last week. Horrible melt downs, angry, crying all the time, hitting, bed wetting, disconnected, counting everything. Took him in and rapid came back positve. We have been on Augmentin since last Thursday and I am getting my sweet boy back again, I would have to say it has been slower recovery this time....Not sure why?? I guess what I am saying is the T & A has not helped us yet, but I have read many success stories. Ginger
  3. Hello Ladies, Thank you for responding. Chel, just wanted to say I completely understand. Be safe on your trip, and I wish you the best of luck! Please keep us posted. I think even if we get together once every 6 months would be so helpful. It would just be so nice, to talk to people that understand what is going on. Tomorrow I have to explain to daycare about PANDAS, I know they are just going to look at me like I am crazy, but all of you have given me some great advice. Dawn I am new to this, so I am going to try and PM you. Hope it works. Ginger
  4. Dear Ginger, I'd be happy to speak to you and advise your pediatrician if you would like. No charge. Please feel free e-mail me at trifmd@gmail.com with contact info. Dr. T Dr. T, Thank you so much! This means more then you could know. I have been reading how wonderful you are...think I know why. I will be e-mailing you soon. Sincerely, Ginger
  5. Thanks for the info. This is a really good idea! My son is only 3 1/2 and his file is already much larger then mine at 36. Poor little thing!
  6. Hello, Sorry I am not able to help you with the above question, but I did notice you live in Iowa. We live in West Des Moines, I was thinking about starting a support group for PANDAS. Would you have any interest?
  7. Yes, I agree that many parents send there kids to daycare even when they are sick. I can guarantee if they were going through what all of us have been through they would think twice. I will certainly ask them to notify me of any recent strep cases going forward. Very interesting that you asked about switching rooms. My son was moved to the 4 year old room just at the end of December and we were strep free for a month in a half, then they moved 4 kids that were previously in his room to the 4 year old room last week. I am a little OCD myself when it comes to taking my son to the doctor. With that said anytime I start to see the crazy Strep behavior I take him in and request a strep test. At first the doctor was very reluctant, because he usually doesn't show any of the normal signs of strep (Sore throat, fever, etc.), so we have had several negative strep tests this way. Always to my suprise, until I started reading that other infections, virus's seem to set off the behavior as well. So usually he has been off antibiotics for a little bit when negative. The strep usually responds to the Rapid tests, I can remember two times that the doctor called back in a couple days after it appeared in the culture. We have also had negative rapid and cultures after finishing antibiotics to make sure the strep is gone, this usually happens when he has it back to back and we think it he is just not getting rid of it each time. Thanks!!! Ginger
  8. Hello Susan, It is so refreshing to read all of the similiar stories, yet so unfortunate. As you know it really takes a toll on the entire family. With that said I finally have hope, that big cloud of feeling crazy is slowly lifting. We all know our children and in my gut I have known something was wrong for a very long time. It sounds like you may of been feeling the same way. May I ask how your child is doing and what treatments you have been using? Have you had any tests done to check immune sytem? We live in Iowa. Thank you for the warm welcome! Ginger
  9. Thank you! I agree 15 days is not enough. Thank goodness the Dr. agree's with this as well. He wants to see him back on the 14th day to run some tests then he will give us another prescription.
  10. Thank you to everyone for the information. Yes my son has had numerous negative strep test's, so we have ruled out him being a carrier. I know the daycare situation is so frustrating, the really strange thing is my son is usually the only reported case. Thanks Again!
  11. Hello Everyone, This is my first time posting on the site. I am looking for some next step advice from all of you. First I want to thank everyone for taking the time to tell your stories. Your stories have given me the strength to stand up and say "I know my son, I know something is wrong!!!" Let me start with a brief history of my son's health. He is currently 3 1/2. Our first confirmed Strep case was when he was about 6 months old, the doctor was very suprised by this, he stated that Strep is rarely seen in children less then a year of age. Prior to this we had numerous ear infections and at 7 months old we had tubes put in. (Not sure how much of this is relevant, but thought I would include as much as I can remember. If I would of known we were going to be going through all of this I would of documented everything better)His ear infections subsided after the tubes, and has only had 2 confirmed ear infections since. Over the last 2 years he has had approx. 12 confirmed cases (Maybe more)of Strep. Most of the time the only way I know he has Strep is by his behavior. In December we had his Tonsils and Adenoids removed he has had two confirmed cases since then. What started me on this PANDAS journey was when he was 2 shortly after a Strep infection he started blinking his eyes repetitively, having horrible melt downs, seperation anxiety, difficulty sleeping, hitting, and couldn't sit still. I talked to his pediatrian about PANDAS, but he quickly dismissed. We have a wonderful pediatrician so , I trusted that I was just being overly concerned and it was just a coincidence. With every confirmed case of strep we would put him on 10 day course of antibiotics and he improved, until another strep infection. I don't think we are getting rid of it and it just hangs out in his system. Finally after 2 years my sons pediatrician has had several other cases and is a believer. This is what has happened in the last 2 weeks. My son had sinus infection and ear infection, so doctor put him on 10 days of Augmentin. He got better after 3 days of being on meds last day of medicine was last Thursday. Come Sunday, crazy strep behavior showed up again. All of the above symptons, it is horrible. He is a completely different child!!!!!!!!!!!!!!!!! Where did my sweet boy go??????? All I could do was cry! Monday I made a appointment for Thursday (Yesterday) I wanted to make sure my husband could go, because we needed to get some answers!! The doctor needed to understand, it is not just me seeing all of this. Wed. night my son told me his mouth hurt...oh no.. I thought. Good thing we are going to the doc tomorrow. Guess what?? He tested positive for Strep again yesterday. The doctor agree's we have to do something different. He is know on 15 days of Augmentin, then the doctor wants to see him to do some tests. I know he is going to test his immune system, which is probably long over due. Back in december we had his ASO Titer checked and they were negative (70). Here are my questions: Any ideas on what test's we should have done? I am having everyone in the house treated with Antibiotics again even the dog. Do you know how long strep can live on surfaces? I change his toothbrush weekly. What other steps would you recommend?(He does go to daycare, so he could be picking up from there.) Thank you in advance for your help! Ginger
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