thereishope

Well, this morning I see that I have white spots all over my tonsil. My dd4 has one spot. My 2 boys don't. No appoitments available today at the office so I'm waiting for my husband to come home from work so I can go to the walk in clinic and my kids can go to urgent care to get swabbed. My PANDAS son's behaviors are in check for now. Please send prayers our way. I just can't lose him again. Thank you. Vickie

Yeah, it can take a few tries to find something a kid will take. My son will not eat anything with a sour coating so that limits our Omega 3's he'll take. Some stores will sample out a bottle if you ask. My son now takes Carlson's Fish Oil. It's a liquid.

May I ask why you are considering accepting the other diagnosises? I have to ask this, so don't be mad, but is part of it that you are so physically and emotionally tired that your mind tells you that at least you'll have an answer? If so, that's normal. The thing is you have to really push past that and keep searching for the answer. If your Mommy gut is telling you the search is still on, follow it. Your son sounds like he was too ridden with health issues early on to have a dr just add on those extra issues. Now, I'm going to pin point those allergies. Are you able to get those under control in the past? If so, how? Really try to get them under control (without allergy shots right now). Each child reacts different to different allergy meds. It is important to remmeber that allergies can be a strong trigger for these kids. I;m not saying that is the only issue, but it is one that needs to be addressed. Also, Herpes, even cold sores, can trigger a PITAND reaction.

Is your child on any antibiotics? If not, I would have that child on antibiotics, especially if doing a steroid burst. Finally, as for titers, swabs and such...those are not always reliable. And as for PANDAS, it is not a diagnostic test for PANDAS. PANDAS still remains a clinical diagnosis. There is research being done that is the closest thing we have to a diagnostic test, but again, it is till in the research phase.

Here is a link to the meaning of a lot of the abbreviations used on here http://www.latitudes.org/forums/index.php?showtopic=7841

This has been mentioned on here before...that the ENT says they can do something to the bacteria to see what antibiotic is best. I think the issue with doing this is that things "act" different in petrie dishes than they do in the body. take strep, for example. In a petrie dish, I think penicillin kills it every time. In the human body, it's not the case. As for the staph, you probably said this somewhere, but remind me...was it a sinus infection? If so, you need more than 10 days.

Is this it? FDA issues recalls for Epogen/Procrit and Octagam http://www.pharmacist.com/AM/Template.cfm?Section=Pharmacy_News&template=/CM/ContentDisplay.cfm&ContentID=24382

If a previous PANDAS exacerbation occurred in past (even if undetected by you because it was minor or dismissed as a result of age), he could be having a subsequent exacerbation right now with a different infection...which can happen with PANDAS. However, I think there's at least 2 people who have said staph was the infection that they believe caused their child's first exacerbation. One is not on latitudes. I think the other is NancyD. If you read this, Nancy, tell me if I'm remebering right.

I'd be curious too. I know there are some parents on here whose kids got better on antibiotics alone. Or does she simply mean PANDAS is not cured with an episodic course of antibiotics, which I agree. It can go into a remission, but the possiblity of reoccurance is there. I suppose that sentence can read in different ways. Can you expand on that... is she saying its a life long maintenance thing.. or is she saying that a pan/pit kid will eventually need a big gun..ivig/pex Good question. Or maybe several years on antibiotics (well past puberty) could possibly work in some kids (kind of like Saving Sammy)? (Or is the thought that Sammy will still have some residual mild issues (OCD, adhd) b/c they didn't do pex or IVIG?)

When my son finally started eating again, he ate something like 3 donuts a day. But, HE ATE! And without me feeding it to him or without me asking. But am I bad parent because of it? Heck no. Now, he's a 7 year old that eats raw carrots, fruit leather, never drank a drop of soda, and says he should eat healthy food. Obviously, I didn't mess him up. Amen. Hat's off to PANDAS parents. Who hasn't cried themselves to sleep over their PANDAS child? I am worried about Blake though with the way others may treat her. I stole a peek at a note book I bought her at a dollar store. She's 12 and a classic pre-teen. She scribbled on one page "I (heart) K" K is the name of a boy in the 8th grade at her school. They next page had a scribbled depiction of a girl with the word "Ugly" and an arrow pointing to her. Blake has anorexia and is a bag of bones. My wife Sarah tells me Blake looks worse than most of the malnourished orphans she volunteered to help in Kyrgyztan four years ago. Her solution is to make Blake sit at her plate until it's clean. (Blake just sits there and quietly sobs.) Her immature teen daughter makes this even harder because Blake gets "special treatment." I react now saying, "we just won't eat with you anymore." Hey, I'd force feed Blake if I had to, but if all she will drink is water because she can't stand flavored drinks then I let her. If all she will eat is chicken nuggets, green beans, and macaroni then I thank the man upstairs she has an appetite at all. I need to get protein into her and if she will eat tacos and chicken I count myself lucky. This is not a normal situation or a normal child. If she were normal, she'd insist on Kool aid or soda pop. PANDAS makes her want to drink only water due to sensory overload. I can't change this no matter how much I want to force her. It's child abuse at some point. I agree that all PANDAS children are different and have to be parented accordingly. This is not science and is instinctive. I do think that there are prevailing social customs in American child rearing that are very bad for PANDAS children. I am willing to be called a bad parent and trust my instincts on this. It's made it hard for me, but I'm not the one suffering. I pray a lot and have gotten a lot of answered prayers.

Yes, I agree, a PANDAS child, especially when in an exacerbation, should be treated differently. When you live with them, see their suffering, and realize the child you once had is gone and trapped....well, luckily I think most PANDAS parents realize parenting skills need to adapt and treat their children accordingly. Even once they are better, you never really parent them the same way you did pre-PANDAS. You realize how delicate life is, you appreciate them more than ever, and know you can lose them again so quickly. It changes you.

What I meant by "basic" antibiotics is that my kids, who do not get any symptoms of strep, clear on 10 days of amoxicillin. And, yes, I know that is a rarity on here. I suppose it may not matter if someone is catagorized as an actual carrier or just someone who does not get symptoms. Does it? Unless, you have a doctor that stands by the idea that carrier does not have to cleared. Yeah...I don't actually know if there is real clarity (among the medical profession) as to what constitutes a strep carrier. It is my understanding, that a "normal" person will clear strep (even without antibiotics) within a couple of weeks (read that somewhere, sorry, don't remember where). So, I think one definition could be someone that 1) is assymptomatic 2) is positive for strep longer term (more than 2 weeks)/doesn't clear naturally I'm not so sure about not being cleared with basic antibiotics (do clindamycin and Azith. count)? It is my impression that carriers may be more difficult to clear (b/c they are not mounting an immune response against strep) than an average person but it is definitely possible. Ed Kaplan did mention at one point that he would consider our PANDAS dd to be a strep carrier...even though she had initial (FEVER) symptoms of strep, the fact that she was still positive 2 mo. later made him consider her a carrier. (Never mind whether she eventually cleared with antibiotics). But, I think that the definition of "strep carrier" remains a little fuzzy....kind of annoying that people toss those words around so much as it means different things to different docs. And should a carrier have high strep titers or low? I don't think that one is known either.

I'm sorry but I didn't read all the responses first. The non-PANDAS child that you say is the strep carrier, did they test + multiple times? All 3 of my kids (only one is PANDAS) do not get symptoms of strep when they have strep, yet they are not carriers. I think it's determined the person is a carrier when they have no symptoms AND basic antibiotics don't clear the strep.Did someone mention to retest your kids 3 weeks after finishing meds?

Thank you for posting an update. I'm happy you and your daughter are finally starting the path to recovery. That appointment was a turning point for you. Please continue to let us know what happens. Did you mention what Latimer's protocal for your daughter will be besides taking her off the Concerta?

Even without a 504 Plan or IEP for PANDAS, the principal agreed to call us when strep is reported in my son's classroom or his brother's classroom. This does cause stress when I get a call, but I feel I need to know since none of my kids get symptoms of strep. When I get the call strep is in the classroom, I send them to school, but I also take that child who has been in the exposed room to the doctor for a strep test to rule it out. I know some may think that's not necessary, but I need to do it to feel like I am doing everything I can so if he does get sick, I am not ridden with guilt. There's also little things one can do to help prevent strep such as sending a water bottle instead of using the drinking fountain, which is a breeding ground for bacteria.

Hi. Here's the example school letter for a child in an exacerbation from the pepsi page. There was another one as an example for a child in remission too. Along with a letter, you can bring the PANDAS Fact Sheet http://www.latitudes.org/forums/index.php?showtopic=6265, the NIMH post, and if you feel they will be standoffish on the whole idea of PANDAS, you can even bring a print off of the Columbia mouse study. If links for those are needed, let me know. http://www.facebook.com/notes.php?id=332059986829&notes_tab=app_2347471856#!/note.php?note_id=142933665738910 The letter below is an example of a letter a parent may send to a teacher informing them of their child's PANDAS. This is written for a child that is attending school while in an exacerbation and is still suffering from symptoms. It is written without too many details of the actual disorder itself in order to keep it concise. It also written assuming you will have a face to face meeting where you can discuss symptoms in more detail, discuss severity, and determine ways you can make the school year go smooth. Obviously, edit and personalize this as you see fit. It is only an example. I will refer to the child as Chris for this letter. Mr/Mrs. _______, My child, Chris, will be in your class this year. Before the year starts, I wanted to take a moment to send some information out about an autoimmune disorder Chris has. This disorder is called PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep). When a child has PANDAS, there is an autoimmune reaction that occurs as a result of a strep infection. The reaction varies child to child but may cause tics, OCD, separation anxiety, sensory issues, ODD (oppositional defiance disorder), change in handwriting and math skills, ADHD, and more. Currently, we are working on getting Chris' PANDAS better. This can be a long process. Chris still exhibits (list main symptoms here). I ask that you find patience and understanding as we attempt to fight this disorder and find remission. Our ultimate goal is to be symptom free. If you are concerned about any new behaviors you may see surfacing, please don't hesitate to let me know. It is best to err on the side of caution and allow us to determine if we need to see the doctor. Also, if you witness any improvement and breakthroughs, I would love to hear those too! I will be asking (school's name here) to inform me if anyone in your class or his/her sibling's class calls in sick with strep. Strep is the trigger for Chris and needs to be avoided at all costs. PANDAS has been referred to as RF (Rheumatic Fever) of the brain. Neither Chris, nor his/her siblings gets symptoms of strep -- no sore throat, no fever. So, if they are directly exposed, they need to be brought in for testing. I ask, if you should ever be diagnosed with strep during the school year, that you inform the office so I can then be notified. I would like to set up a face to face meeting with you to discuss this further, provide you with papers that may help explain the disorder even more, and to answer any questions you and I may have. Please remember that Chris is like any other child, he/she just happens to have an autoimmune disorder that may affect movement and/or behavior. Together, I believe we can make this a wonderful school year. Rest assure that PANDAS is not contagious. No one in the school can catch this from my child. I am simply asking you to be part of our "team" in getting Chris healthy and well. You are an integral part of his/her life and I appreciate your help. Here is useful link on PANDAS that you may be interested in reading prior to our meeting. PANDAS Fact Sheet http://pandasnetwork.org/impact-on-the-family/fact-sheet/ Thank you for your time and understanding. I look forward to hearing from you and scheduling a meeting.

What medicine did she give you? I'm sorry for the bad experience. I think the majority on here have had that happen one too many times. Walk away looking at that appointment as something that gave you more drive to find the cause and get your child better. Everytime a doctor poopooed me, it added the fuel to fire to prove them wrong.

I don't have time to write a lengthy response (it's my PANDAS son bday!), but wanted to just wanted to chime in about my son. He did not have IVIG or PEX. He did use to have setbacks with allergies, viruses, etc. However, he no longer does. Why? I don't know. His last strep infection was March 2009. He's been in remission for a year. Is it that his immune system had a chance to calm down? Again, don't know. But I wanted to chime in that with some kids...their "reactions" or sensitivity changes. I do, however, know in my heart if he gets strep again, we will be thrown back into the chaos.

Peg, we all have moments when we feel we're reaching the breaking point. It's a crummy (to say the least) feeling to see what it can be like then to get pushed backward. Remember the good days she was having. Remember she has it in her to fight this disorder (and she's proved that) and you have it in you to help her. I know what it feels like to have that break for a small amount of time, then get slammed back down. When you actually almost got use to the chaos, but then suddenly you feel you can't do it anymore since you had a taste of what it can be like when it's better. Keep fighting for her. Remember your goal of taking her trick or treating this year. Remember how she was starting to want to overcome her fear of elevators. Use that to find that inner strength and fight for what you think and know your daughter needs. Look at you daughter and say to yourself " She needs me to fight for her. She wants me to fight for her.". Would Latimer be able to help with any suggestions to the doctor since you saw her before? Know we are all here for you. Maybe not physically standing there with you, but emotionally and spiritually.

My kids don't get strep symptoms either. For my PANDAS son, it has been the behavioral that has led us running to the dr. However, if he should ever have anything that makes me think a physical symptom could be a hint of strep, I'll take him. These kids are different. I can't be sure one day he won't start showing physical symptoms, even if they are atypical physical symptoms. I think someone on here said they had a child that use to be symptomless, but then had one bout of strep with a sore throat.I also take my kids when I know they have been directly exposed to strep. I know others experience this too. It's so stressful to think I can have 2 kids (that don't have PANDAS, but still show no physical symptoms of strep) be walking around the house as a ticking bomb waiting to give strep to my PANDAS son.

I say if there is physical symptoms that causes a red flag in a parent's mind, take them to the doctor! I don't know the time frame between contracting strep and finally having the antibodies start the chaos so if there's a chance I can catch that strep before any damage is done, I'll sure try!

I think in a person with a normal immune system, strep can eventually clear up on its own. So, it is possible anyone with a normal immune could have strep before and not known it. I don't know how long it would take to clear up on its own. For viral throat problems, such as tonsilitis, there is no green phlegm. Green phlegm could indicate an infection like a sinus infection or perhaps pneumonia?

How's your daughter doing?

It is possible. Track her progress through ratings or a journal. And please keep us updated!

Well, as a child, I had tonsilitis all the time. Being told it tonsilitis was viral and not actual strep throat. However....my ped as a child always gave me penicillin when I had it. I personally think I did have strep as child. Maybe not every time, but I can't belive all those numerous times were always just tonsilitis. I don't really remember having such a sore throat I couldn't swallow, but I did have horrible white patches all over them and a yucky taste.