thereishope

There are specialists in the US and some do phone consults with your local doctor. The parents on here consider Dr B - Dr Bouboulis, Dr K - Dr. Kovacevic, Dr L - Dr Latimer, Dr T - Dr Triffileti to be the leading doctors. I don't know who does and doesn't consults with doctors, but I believe Dr K does. Perhaps past patients of the others can chime in more. You can find contact info for them on the doctor list http://www.latitudes.org/forums/index.php?showtopic=6428. Many local doctors will refer to the NIMH website for guidance in diagnosing and treating PANDAS. THIS IS NOT GOOD. The NIMH website is very outdated. Here is a link to the PANDAS Fact sheet Buster did. It is great and, if I recall, everything stated on the fact sheet is backed by studies... PANDAS Fact Sheet http://www.latitudes.org/forums/index.php?showtopic=6265 If you need a more "official" source (if your doctor is strict and may raise eyebrows on a general print out), Buster's Fact Sheet appears on the PANDAS Network website as well and on the PANDAS Resource Network. www.pandasnetwork.org www.pandasresourcenetwork.org Then there is the FAQ sheet. This sheet has anedoctal information on it. .But what is stated has been cited numerousd times by parents on this forum... PANDAS FAQ http://www.latitudes.org/forums/index.php?showtopic=6266 Another good article is about antibiotics and strep.... http://www.entrepreneur.com/tradejournals/.../169459644.html

Thank you for sharing. Did you get treated for strep even though the culture came back negative? I'd trust the rapid. if that rapid came back +, I don't even see the reason why they cultured it. You're going to think I'm crazy for asking this, but how was his vitamin D levels when he started the "looking at the sun" tic? Could his body have been telling him something?

It's those accomplishments (no matter how small they may seem to some people) that give you that driving force to forge on and get your child better. One time, a stranger asked my son "How are you". He said "Good". I just thought about that for days. I was so happy. That was such an accomplishment. Not even him saying good,but the fact that he responded anything at all.

Isn't it odd how angels enter our lives at times? I bet your heart skipped a beat when he said that to you. Congratulations.

Can I whine now? I wannna go!!!!!!!!!!!!!!!!!!!! But, I'm not

Thank you for letting us know. How exciting!

I agree writing is a lot easier than face to face. For younger ones who can't write, you can ask them to draw. You then try to get a story from them about the drawing. We also sat together, I bowed my head down slightly and closed my eyes while he talked. When they don't make eye contact with you, it's easier for them to open up.

Welcome. I am brainstorming here so bear with me. At first, I read what you wrote and it looks like he's allergeric to a lot of meds. But then I also stop and wonder if the hives is a form of herxing. 2 of my kids get hives when their body is trying to rid itself of an infection. Does anyone know if hives could be a form of herxing? Also, for some, hives could be their symptoms of strep. How are his PANDAS symptoms right now? Do they believe he is strep free?

Melanie, this was the list from an article in a 2008 Scientific American Mind. It stated what disorders are known to be associated with herpes.... Schizophrenia Prenatally: Influenze, rubella Toxoplasma gondii, herpes, Lyme, polio, measles Post: T gondii, Lyme, chlamydia, herpes OCD/tic disorder Prenatally: No links found Post:strep Bipolar Prenatal: Herpes, T gondii Post: Herpes, T gondii Autism Prenatal: Rubella, herpes, Lyme Post: Lyme, Mycoplasma, clostridium (bacteria that causes botulism) Alzheimer's Prenatal: Herpes Post: no links found Tourettes prenatal: no links found Post: Mycoplasma

Bedwetting was a symptom for my son during his third eacaerbation. A boy who hadn't wet his bed in ages, wet it nightly for a month or more (and not just a little bit). It was directly related to PANDAS and as he healed, the bedwetting stopped. So, yes, that may be a sign that the Biaxin is working.

Honestly, if you feel okay I probably wouldn't get tested. I mean, when do the tests stop? It seems everything causes something. I hope this isnt getting personal(LOL).Should I be tested for Herpes? To see if he was exposed to it at birth.I dont think I have herpes ,I think I would know .HUmmmmm. how is Is herpes 6 transmitted .Is it just a blood test?? Melanie

With us, it goes both ways. When he had H1N1, it was H1N1 symptoms first, then a PANDAS blip about 3 or 4 days after the fever broke. When it was allergies, it was vice versa. PANDAS first, then allergy symptoms. It seems with my son the further he got from the last strep infection, the PANDAS as a result of non-strep calmed down. In 2009, when he was only a couple weeks into recovery, those allergies really sent him overboard. I am happy to say that he handles viruses and allergies better now with no PANDAS surfacing. I pray that it stays that way!

I'm sorry. I usually include links with quotes... http://intramural.nimh.nih.gov/pdn/pubs/pub-3.pdf It's her landmark paper "Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infections: Clinical Description of the First 50 Cases"

Ibuprofen is what we use here too.

Herpes was something listed in a few catagories as being a trigger for some "mental disorders" when exposed either prenatally or post.

I'd suggest giving her Ibuprofen for the next week or so.

With PANDAS and PITAND, for some kids once that initial exacerbation occurs, other subsequent assaults on the immune system will make PANDAS symptoms increase.This includes viruses, other infections, allergies, etc. To quote Swedo... I think some PANDAS kids' PANDAS reaction is more sensitive than other physical symptoms of illness. Last year, my son's PANDAS increased a week before the physical signs of allergies. The allergies were the trigger.

I totally agree with that!

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As with any allergy meds, each child reacts different to them. Like peglem said, some may get rages or some get hyper or sleepy on Benadryl. But, then for my son, he's the opposite...dye free Benadryl is the best allergy med for him. He doesn't even get sleepy on it. He gets hyper after being on Claritin for 10 days. So, if you think it's adversly affecting her, it may be time to try something else.

I don't really know where I stand. I'm being honest here. It would be easy for me to say don't vaccinate at all, but my kids are 3,6,9. So all their baby vaccinations are past. I am debating what to do with my 3 year old as she approaches kindergarten. She has had strep already and PANDAS did not surface, but I also know that does not mean she is 100% in the clear. I have mixed feelings that the boys got the protection from those vaccines and she may not, but I don't want to put her in danger. I know that I do not like live vaccines. I've already passed on the second dose of chicken pox for my boys and none of my kids got a flu vaccine or the H1N1 vaccine. So, I don't think I will be much help for you on this topic. I'm confused and torn too. I live in Ohio where I can get a religious or philosophical exemption. A great website is www.nvic.org

In some people, steroids do affect moods and actually make them more aggressive. Also, it has been said in here that if the child had Mycoplasma P, the steroids could worsen things intially. Is she still on an antibiotic? She really needs to be on one while doing a steroid. As for the TS connection and steroids, are the tics over the top since you started the steroid?

My heart just sunk. That's reassurance OCD. Is she spiralling into hand washing, blowing on food before eating? Did you have a follow up strep test done on her yet? With little kids (even age 4) I would say that one OCD habit surfacing might be okay if it was related to a bedtime ritual or a wanting specific plate, but the one you are describing, I wouldn't put into the catagory of "acceptable for the age". Especially since it sparked a meltdown when it wasn't fulfilled. What you can do is to try to get her to overcome it and kind of see how that goes. When she asks you if it was on the floor, you can say "I will answer you once, but not again. Look at me to make sure you are hearing me. No, it did not fall on the floor". Then maybe after a week, warn her that you will not answer the question at all. This may cause anxiety at first but hopefully, it will calm down after a few days. When you bring her to the dr for a strep test, make sure they check her ears and nose to make sure those aren't infected. Don't make a nurse appt.

That's great! It sums up a lot of stuff...both in personal life and on the forum. Thank you for sharing it.

Doug, how old will your daughter be for the next school year?