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Here's a couple of threads about allergy meds. I saw Singulair mentioned in a few other threads but didn't post them because it would be one post out a handful on another topic, but they did say their child did better after stopping it. You can search "allergy meds" to get more results. http://www.latitudes.org/forums/index.php?...hl=allergy+meds http://www.latitudes.org/forums/index.php?...hl=allergy+meds

Welcome. Can I ask what the dosing is on each prescription and how long has he been on the Abilify?

I'm the one who mentined to 7up Mom that I thought I once read some theorize that if a child has a steroid burst, the IVIG may have better results. I suggested starting a thread about it since I couldn't fully remember if that was a possibility. I am glad you started it! So, I guess it doesn't matter. Now, a steroid burst did help my son with recovery. BUT it should be noted that he received it very early in the exacerbation and that is why I think it helped in that way. In his second strep triggered exacerbation, he started a burst 5 days after the exacerbation started.

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As I said in the other post, my son is a text book PANDAS case, but he gets better on antibiotics, a steroid burst for one excaerbation, and a lot of time and healing. I want to get the forum's "blessing" if you want that represented again or if IVIG and PEX cases need more attention.

I never watched the show. Would it have to be a story that the child went undiagnosed for while? My son has recovered 100% from 3 strep triggered exacerbations and has had viral and allergy triggers.However....he is an antibiotic, steroid (with one episode), and lots time and waiting. Would you guys even want that represented or do want more IVIG and PEX? He did experience a lot of different PANDAS symptoms, but no tics.

Wow....about the corn. Corn is an inflammatory. But then, corn is in almost everything. So if can knowingly limit it, it's a good idea. You can also use a saline nasal spray to try to get out any pollen that may be in their nose. Has anyone tried that allergy blocker that you can put in the child's nose? I've seen it but haven't read ingredients.

So, if the child's sudden onset is triggered by strep but then the child has subsequent exacerbations from other triggers, would that be PANDAS or PANDAX? For my son, first sudden onset brought on by first known strep infection. During recovery, viral triggers would increase PANDAS symptoms. the futher on in recovery, the viral trigers weakened. Strep remained the "big gun". Prior to the strep triggered sudden onset, the only problem was a reaction to the chicken pox vaccine. So, I guess my son would be...started as PANDAS, graduated to PANDAX, but is in a kind of limbo right now. So, the child may always flip back and forth on the diagnosis or is it based on the initial cause that started it all?

If you do a steroid burst definitely stay on antibiotics! A steroid can lower the immune system. Even if it's a 5 day...stay on antibitics.

I'll look for the posts that singled out Singulair.It's one of those things that I read more than once that their kids didn't do well. When it's one or two kids I leave in the mindset that everyone reacts different, but when I read it over and over...I don't take chances. I actually get to have the day without kids today! So I will find links to back up that statement tonight or tomorrow. Also, not all negative reactions happen right away. So, mark on the calendar the day you started and just be watchful. If you do Sigulair, that's up to you. Just keep watchful and know if negative things start to pop up (also PANDAS wise, not classic allergic reactions as stated on the box) the allergy meds might be part of the problem. Like with son and Claritin. It didn't even occur to me that's why he was so hyper on day 11 of use. I thought PANDAS was kicking back up. Some OCD kicked up too. Pushing the chair over and over and not being able to get it even at a family party. That was fun.Then my sister told me some kids get hyper on it. I had my lightbulb moment an switched that day. She was right. I should add that my was also prescribed Flonase when he had his sinus infection. He did fine on that. Susan, I believe it was your daughter that developed a nose bleed, right? The only thing with nasal steroids is I read even though they are more local they can eventually lower the immune system. So, I keep it on hand but don't use it daily. I also once read that taking a steroid at night is better for the immune system than taking it in the morning. Anyone ever read that?

For my son, each exacerbation did have slightly different symptoms and the severity of each symptom varied. So,I will list some things, but not to say they all occurred in the same exacerbation.My son was 5 years old. Extreme separation anxiety Migrating solely to one area to play (he was 5 and in preschool-always the Lego table) Wouldn't interact with the other kids Wouldn't stand too close or sit too close to the other kids. Always space between them. Wouldn't partcipate In public, had to wear a hood all the time. Look down while walking in public Hand in sleeves Had to wear a jacket and never take it off If a stranger or even relative tried to talk, blank expression on is face If you said "Hi"...no response from him Basic social skills were lost Raspberried at strangers if they acknowledged him Didn't want friends to play with his toys Wouldn't eat lunch at school Didn't want strangers or other people to hear him talking to us Hid behind us or behind fixtures at stores Out of nowhere, run away from us in a store Couldn't show affection. Swat at us if he got mad, even in public. Yell at us in public. Do wierd sounds in public. Um...this list could go on. He also had a lot of OCD so that would also affect the way he was in public and in social situations. Sometimes you have to look at each situation and disect it. OCD, in particular, has a snowball effect on many things.

My ped said he's seen a lot of it this year. I know a bad cough was rampant in the school. He also said H1N1 and allergies (specifically dust mites) being on the uprise this year aided to Mycoplasma P increasing. Do you know anything about the connection with H1N1, allergies,and why that would cause Mycoplasma to be so "popular" this year?

dd= dear daughter ds=dear son or maybe it's dearest, but you get the idea.

I just want to remind some of the newer people that allergies can be a trigger for PANDAS symptoms. I think Spring allergies are going to hit earlier this year. So if you see an increase in symptoms and you know it's not strep, determine if allergies are surfacing. Lats year, interestingly, my son's PANDAS kicked up a week BEFORE he had physical signs of allergies. That was at a time when no one was really talking about allergies being a possible trigger and I finally figured it out on my own. That was a very nerve wrecking time. For him, once I got the allergies under control, I saw his PANDAS symptoms calm down again. As for allergy meds, the only one I've seen with red flags on here across the board is Singulair. Otherwise, it varies with each child. For my child, Claritin worked at first, but on day 11 made him very hyper. For him, Benadryl is the med of choice. He only gets tired on day 1. But then I know other kids that get hyper on Benadryl. So, be aware that you can also have reactions from different meds and it may be trial and error in that.

Cut and paste the whole thing that is in your browser. Then it's gets abbreviated when you post it on here http://abcnews.go.com/2020/MindMoodNews/pa...ory?id=10073035

Hee's a link to the 20/20 page regarding the schizophrenia series they're doing... http://abcnews.go.com/2020/MindMoodNews/pa...ory?id=10073035

The ideal is to have the test done during an exacerbation. Steroids should not preceed the test. Tics as the main symptom, I believe, get higher score than OCD as the main symptom.

have you read Chemar's posts about he son and Omega 3's deriving from fish oil in pill form? I believe he can eat fish and he also gets his Omega 3's from flax oil. She said she knows otherkids who have the same problem with it. Does your child have a fish allergy? If that's it, they also make vegan Omega 3's.

Alergies are a trigger for my son. They are coming early this year and I may start him this weekend on Benadryl. The only alergy med I've read to stay away from with PANDAS kids is Singulair. With everything else, each child reacts different. I first tried Claritin. He was fine until day 11 then he was crazy hyper. Switched to dye free Benadryl. Tired the first day but then adjusted and then can take it daily.

Can someone tell me how it is finally determined that a disorder warrants a diagnostic code? Who makes that decision?

There was study done that showed the Zith was more effective as a prop than penicillin. Also. penicillin does have a failure rate as someone said above with the link to the article. That article was written based on a study. It's just not one guy throwing that info around. Now some kids do fine with amox and penicillin. I agree if PANDAS symptoms are not gone, I'd be very nervous switching to proph penicillin right now. My son experienced back to back excerbations. He wasn't fully recovered from #1 when #2 hit. It was worse, more symptoms, and a very scary dark time in our house. Are you comfortable with the decision? Also, make sure no one else in the house has strep. Lower his risk of reinfection that way too.

I missed it. As for the reference to "Infected with Insanity" it also said that if there is an autoimmune reaction, even getting the flu shot while pregnant can increase the risk of the child getting schizophrenia later on in life The full microbe list for schizophrenia is.... Prenatal: influenza, rubella, toxoplasma gondii, herpes, lyme, polio, measles postnatal: T.gondii, lyme, chlamydia, herpes

This is an exciting post to wake up to! The fact that a big company now has officially heard the word PANDAS and IVIG is great! Awesome work!

Just wanted to extend a warm welcome. Also, with newbies, I like to share some of most informative thread for you to look over. I suggest printing them out ,looking over them, and you might have some "aha" moments. PANDAS Fact Sheet http://www.latitudes.org/forums/index.php?showtopic=6265 PANDAS FAQ http://www.latitudes.org/forums/index.php?showtopic=6266 What OCD can look like as seen by people on this forum http://www.latitudes.org/forums/index.php?...ic=6153&hl= Buster's flowchart for helping you through the journey of trying to figure out if it's PANDAS http://www.latitudes.org/forums/index.php?...ic=6688&hl=

I have a family of 5 on one income that's nothing impressive. I am a major bargain shopper. read your labels on all food you buy. Try to also stay away from high fructose corn syrup (hfcs), food dye (very hard to do this), and buy natural or organic when you can. FDA does not regulate the word "natural" so still read your labels. You be surprised that some generics are better than some name brands. Also, things like organic apples are also sold in bags and around me (when bought in a 3# bag ) is only $2.99. That's only $1/lb! It becomes a whole different lifestyle. The one "splurge" I have is bread. It's hard sometimes hard to find bread w/o hfcs on sale, so I will spend more on that. Oh, ketchup too. But my kids eat so much ketchup that I do spend more to buy organic ketchup w/o hfcs. Biaxin is a macrolide. A cousin of azithromyacin. It will kill things like intracellular strep, lyme and mycoplasma that other abx can't get to. Probiotics are the good bacteria that is necessary for the GI tract to function correctly. Without them people suffer all sorts of issues like digestion problems, diarrhea, yeast overgrowth, leaky gut, etc. Antibiotics kill both the good and the bad bacteria, so when taking an antibiotic it is a good idea to take one to replenish. You can buy them at the grocery store. A good brand is Culturelle. The good ones with a lot of organisms aren't cheap, but it is worth getting a good one. You can't take them at the same time as the antibiotic because it will kill the good bacteria. I try to give them at least 3 hours apart. Wow- hate to admit this, but as far as supplements, I didn't pay as much attention as I think I should be, Just thought I had such a large family there is no way we could switch to gluten free , etc- sort of stuff- for everyone in the house, and buying two sets of groceries when our grocery bill is already outrageous lol was not even an option. But wow- I need to open my eyes- thank you for explaining that, it put some importance on something I have never done or thought was that important ) : sounds like I was way off the mark there.