colleenrn

I know, I've searched too and can find how long but not the dosage! Anyway, if I don't get it by our appt. time, she can always call it in later - b/c shewants her to \change antibiotics first for 3 days then add the steroid, so if anyone finds this in the next day or so, please let me know! Also, does anyone have contact infor for Dr. Latimer so my doc could contact her directly? Thanks so much! -Dawn

Thank you. That is what she recommended too, but when I asked for 3 weeks as Dr. Latimer prescribes,she was concerned about the weaning off that would need to be done, and wondering if she starts out with a higher dosage and what she then tapers off to. Anyone seen Dr. Latimer? I'm so thankful for these quick responses - I'm desperate! My daughter is in so much turmoil, it's painful to watch. Thanks, Dawn (Colleen's sis)

Hi, I'm posting under Colleen's account b/c I don't have time to get set up. I'm her sister, the one with the 9 year old daughter whose recent symptoms include the feeling watched. My doctor has just agreed to change antiibiotics and to try 3 weeks of prednisone. She wants to know what dosage Dr. Latimer prescribes and how she tapers it off. Please advise asap as we're going in to her office in an hour. It is 1:30 EST now. Thanks so much, Dawn

Thanks for your responses. I asked my daughter and she also remembers when she was younger having those feelings intermittently. She still, after exactly two years ago today (I remember the exact date that the intrusive thoughts began b/c she was starting middle school), will NOT sleep in her room alone..... It is definitely night time anxiety, that fortunately is not occuring during the day so much anymore. That is one symptom that will just not go away. On a scale of 1-10 (10 being the worst PANDAS symptoms) she is a 2 right now. Over the past two years she has gone as high as an 8, but even at a 2 she won't sleep alone. She can sleep away from home, but I attribute that to the fact that when she is away from home she is either at a sleepover or at Grandma's and at both places she has someone sleeping in the room with her. I am thinking about starting her back on inositol as that has been helpful in the past. She has also been on Zithromax 250/day since Oct. 2008. Colleen

I was wondering if any of your children with PANDAS reports feeling scared when alone, as if someone is watching you. My niece with PANDAS recently reported that when she is alone, she feels scared that someone is watching her. She says it feels "creepy and scary". She does not seem to have any other paranoid type syptoms- does not feel people are talking about her or out to get her, just watching her. She is definitely having a flareup of symptoms, but this one is a new one and very concerning to us. ANY input would be greatly appreciated! Colleen

Two of my children, right now, have pea sized nodules on the back of their head, not neck but higher up. All of my kids have had these pea sized nodules on and off. I always was pretty sure they were swollen lymph nodes b/c you have some lymph nodes there. I have showed them to various docs and no one seemed concerned. I am a liitle concerned about my 8 year old b/c after reading these posts I felt his and it is much bigger. I am going to have them checked next week when we are at docs (he got 5 staples in the back of his head yesterday after smashing it open on cement...) Colleen

Have you ever gotten a positive result witht he rapid test?

My sister sent the article to me. She received it via google alerts, which I did not even know existed. You type in key words that you are interested in and you get an alert if any of those key words are posted on the internet. Colleen

It may take you calling and very assertively and specifically telling her that you want a trial of Zithromax, that you have tried everything else and that you are in contact with several PANDAS families that only had positive results with Zithromax. She did give it to someone on this forum (I forget who) that saw her and asked for her child to be put on it. You can be really politely assertive and tell her that you will not take no for an answer. I think it is outrageous what you have had to go through to get the right help for your son and I am very sorry for that. Colleen

My daughter had her tonsils and adenoids removed when she was 6. She was on prophylactic antibiotics until 2 days before surgery. I don't remember if she was given antibiotics IV during surgery, but I know she was on NO antibiotics following surgery. She was symptom free for exactly 1 1/2 years, at which time she woke up one morning with PANDAS symptoms returned My son had his tonsils and adenoids removed when he was 5. I don't remember if he had antibiotics during surgery, but he was not on them prophylactically before or after surgery. His PANDAS symptoms came back much sooner- maybe within 6 months. He did not begin prophylactic antibiotics until he was almost 8. IF I could do it over agian, there is NO question whatsoever, that I would make sure they were given IV antibiotics during or following surgery. I would also definitely put them on prophylactic antibiotics following surgery. Colleen

http://www.eurekalert.org/pub_releases/200...s-ats081009.php Maybe we are finally, once and for all, going to get this "controversial" disorder recognized! Colleen

Michele- I am SO sorry for what you are going through with your son. I just keep going back to the fact that NO one will put your son on Zithromax. I completely disagree with a physician saying that "no children" should be on Zithromax. Based on all of your previous posts, I believe your son is PANDAS. Based on that, and given that he responded to Omnicef and now he is worse off of Omnicef, I think he needs to be given a months trial of Zithromax. IF the strep is intracellular, which it very well may be, Zithromax could really help. I also do not understand Dr. Latimer's stance on him not needing antibiotics. I understand the antibiotics don't "get rid of" strep, but it is needed to prevent further strep and/or treat any strep that may be lurking in his body. Has anyone 100% ruled out perianal strep? Could his bowel issues have begaun with the irritation caused by perianal strep and now they have just "blossomed" into" him focusing on that behavior? I know you have tried so many times to get him on Zithromax, and I know this post is probably not very helful, I just really think a trial of Zith is MORE than warranted in your case. They offer you Risperdal and scold you for not giving it to your son, yet refuse to give you Zithromax, when risperdal (in my opinion and experience with seeing children take it) is much more dangerous than Zithtromax. Good luck and hang in there!! Colleen

Manda, I also wanted to comment (forgot to in last post) about the bipolar diagnosis issue. I firmly believe,for many reasons, that a large majority of children/adolescents who are diagnosed as bipolar, are absolutely MISdiagnosed. They are really PANDAS, BUT misdiagnosed due to lack of knowledge about PANDAS. If you read the list of bipolar symptoms in the book your doc told you to read again (The Bipolar Child), I would say that 95% or more of those symptoms are PANDAS symptoms. Very Common Separation Anxiety Rages & Explosive Temper Tantrums (lasting up to several hours) Marked Irritability Oppositional Behavior Frequent Mood Swings Distractibility Hyperactivity Impulsivity Restlessness/ Fidgetiness Silliness, Goofiness, Giddiness Racing Thoughts Aggressive Behavior Grandiosity Carbohydrate Cravings Risk-Taking Behaviors Depressed Mood Lethargy Low Self-Esteem Difficulty Getting Up in the Morning Social Anxiety Oversensitivity to Emotional or Environmental Triggers Common Bed-Wetting (especially in boys) Night Terrors Rapid or Pressured Speech Obsessional Behavior Excessive Daydreaming Compulsive Behavior Motor & Vocal Tics Learning Disabilities Poor Short-Term Memory Lack of Organization Fascination with Gore or Morbid Topics Hypersexuality Manipulative Behavior Bossiness Lying Suicidal Thoughts Destruction of Property Paranoia Hallucinations & Delusions Less Common Migraine Headaches Bingeing Self-Mutilating Behaviors Cruelty to Animals

Manda- Everything you describe is consistent with PANDAS. The large cryptic tonsils, the urinary problems, unexplained fevers, headaches, stomach aches-- all make me think she does have strep somewhere. You said an infection was ruled out? What tests did they do? When was she last on an antibiotic? You will get answers when you see Dr. K. Good luck!! Colleen

Does she feel the hotness around joints or near joints? Colleen

His knees are always skinned up and he reopens the wounds a lot by falling on the driveway. Other than his knees, no cuts or scratches that I can see. Colleen

Three of my children are on Zithromax prophylactically, my youngest is not. They were heavily exposed to strep for a whole week, about a month ago and had a flareup of PANDAS symptoms. I took my youngest (not on antibiotics) for an upper respiratory culture last week. My NP said his rash was unmistakable for a scarlatinaform rash (he has had many rashes exactly like this one before while having PANDAS symptoms) and agreed to treat him even though the rapid was negative. Just found out that the upper respiratory culture was negative for strep. I KNOW he has or had strep. I am wondering where people have isolated the strep to be when you know your child has it, but cultures are negative. I know where it could be hiding out (sinuses, adenoids, gut, perianal), BUT where have you found it in your child? Thanks so much! Colleen

Faith- What state do you live in? I am in VA and did religious exemptions for my children. So far no one has said a word about it or asked me any questions at all. Colleen

I am lucky that when it comes to medical/dental procedures, my children are very compliant. I would resort to any type of bribing/treats to get them to comply with a good swab if you need to b/c a swab that is not done correctly could give you a false negative. Colleen

To do an upper respiratory culture, you just swab the throat the same as a regular strep swab. When it gets to the lab, they test it differently. There is a nurse at our office who does very thorough swabs and I was talking to him about how some nurses just stick the swab in and out. You have to make sure (mention ahead of time you want a really good swab)that they hit BOTH tonsils, the uvula, and the sides of the throat. Don't let them take two swabs at once (one for rapid test and one for culture). Ask them to swab it one at a time. Colleen

This is the link to a thread I started a while ago about my 2 yo testing positive for Group B strep. The details are in that post, but during a PANDAS flareup in all 4 of my children, my then newly turned 2 year old tested positive in an upper respiratory culture for Group B and I was postive for beta strep, non A, B, C, and G. I was Group B positive during all 4 of my pregnancies. I was treated with antibiotics at 37 weeks and again during labor. All of my kids were fine- none of them got sick. I feel I must be a carrier b/c I was never cleared and I have been worried all these years about me exposing my children to Group B strep. I know that it is not just strep A that affects my kids. It is any and all types of strep. This is the reason I now ONLY do upper respiratory cultures. Had I done a regular strep culture, I would not have found out about the 2 other streps My son and I had. It may be a little more expensive, but it provides more information. I agree that figuring this out is very tricky. Any input would be appreciated. http://www.latitudes.org/forums/index.php?...ic=4107&hl= Colleen

Yes, it is a homeopathic med, but it is FDA approved. It used to just be sold in health food stores, but now you can buy it at many stores (Walmart, CVS, and more). I was not sure the first time we used it that it was going to work, but was just amazed at how well it works. You give it at the very earliest signs of flu and take a total of 3 doses. http://www.oscillo.com/ Colleen

My opinion is that the vaccine is potentially very dangerous and will not be adequately tested. I fear they will try to make it mandatory. I disagree with giving it in the schools. I want the right to self quaranteen my family, but the more I read, the more afraid I am that I will not have that option. I will not be getting it or letting my children get it. So far, everyone in my community that has had H1N1, has had a mild case and recovered quickly. One of my kids has already been exposed to it- not gotten it yet. I think I would rather get it now, then we will hopefully be immune for the fall and winter. IF you get the swine flu or any flu, I HIGHLY recommend taking oscilloccocinum. It is FDA approved and works similiarly to Tamiflu, WITHOUT the side effects of Tamiflu. I have taken it while pregnant, have given it to a one year old-12 year old. It cuts the viral load in half, and after the first dose, you start feeling better. It has worked wonders for us through many flu seasons. Colleen

Thanks for your responses. Did your pediatrician spin it or just send the blood whole? I tknow they prefer it spun, but I am pretty sure my docs office cannot spin it, but would draw it. My 2 yo is now running a fever in addition to the rash, so I think he has strep and this afternoon when we are in the office would be a good time to do it.

I have a question about getting the blood draw done. I am taking my 2 year old to the doctor this afternoon. He has what looks like a strep/scarlet fever rash all over and huge pupils. My other 3 kids are having flareups, even on Zithromax, but they were heavily exposed to strep for a whole week. I think they will send me to a hospital lab for the draw. My question is, what do your doctor's put on the lab order sheet? Thanks, Colleen