thereishope

I just posted something in this thread somehwere else and thought you might be interested too since blood tests came back normal but antibiotics help... Quote from Buster ( http://www.latitudes.org/forums/index.php?...ic=5520&hl= ) "Another Wrinkle Just to throw an entirely weird wrinkle on this, the recent Kurlan paper shows that ASO titers drop after long exposure to strep (even if the strep is untreated) -- indicating either the strep is changing in what it produces or that the body gets used to the Streptolycin O (sort of getting used to bee stings) and stops mounting such a defense. This sure raises questions about the effectiveness of ASO as a strep selection tool."

I remembered reading this response Buster once wrote. I thought you might be interested. The whole thread can be found here... http://www.latitudes.org/forums/index.php?...ic=5520&hl= Quote from Buster... " About 40% of children who have positive throat cultures exhibit no rise of either ASO or AntiDNAse B. See "A little bit about ASO" at http://www.latitudes.org/forums/index.php?...art=#entry25312 According to current research, about 5% of children are likely carriers. Thus 35% of children have infections but for reasons not known don't seem to mount ASO or anti-DNAse B responses. .."

Welcome. First let me say that I think you are very smart and courageous to go down the PANDAS path again. It seems like there are too mnay correlations to be ignored. As for the reference to vaccinations, a good amount of PANDAS kids have had reactions to the chicken pox vaccine. Whether it be shingles, chicken pox itself, or an excaerbation. I agree with the others that you need to get to an expert and you need those antibiotics as well. As you've probably read here before, strep can occur in more places than the throat and soemtimes strep can be very hard to erradicate.

I went on antibiotics for acne when I was a late teen. Acne will worsen for the first three months of antibiotic treatment and then slowly clear. It takes that long to get all the infection and toxins out. The antibiotic itself may make a difference too. Usually, dermatologists give tetracycline for acne (I had a reaction to it and never made it to month 3) and EAMom posted a bit ago that Zith is suppose to be good for acne.

The 2 weeks I was referring to was for a strep test. Just the regular throat swab to see if there is still an infection. Rapid and culture. As for length of antibiotics...well...I would think the the ideal is to stay on the type and dose that you see improvement until you get your child back and is stable. Then eventually your doctor may want to try a lower prohylactic dose. Some have lowered the dosing down fine, some have seen backsliding as a result of it. But, ideally, your child would just stay on abs to try to prevent a future strep infection. Perhaps until they are an adult.

My Ibuprofen bottle says a 75 pound person can take 300 mg. I think the age of when someone gets their period would be more genetic. I was no where near 100 pounds in the fifth grade. I think I was like 10 years old. I have an 8 year old boy and he's already showing thinks like underarm hair! It's so weird!

Welcome. Was she also put on oral antibiotics and is she still on them? If so, which one? As for the "I believe " phrase. It sounds like such a small OCD thing but it so complex for her. Not only does she feel she must say it, but then she need sthe reassurance, she needs to say it a certain number of times. I used to think some of my son rituals seemed so basic until I tried to dissect them and help erradicate them. They are so complex. What one thinks is one OCD habit can actually be up to 5+ of them all interwined. I would suggest also taking all family members in for strep tests. That's how I found out my non-PANDAs kids were asymptomatic like my PANDAS son. No classic symptoms at all. You can also try Ibuprofen (Advil, Motrin) and that sometimes helps eases PANDAS symptoms. As for schol, play it by ear and follow your gut. You don't want to accidentally start a fear or phobia abut school by keeping her home but you also want to put her health first.My goal was alsways to get my son to school, becasue I knew he didn't want to and it was hard for him during an exacerbation. I knew every time he stayed home it would enforce the negative feelings about it. Fortunately, for the most part, he was okay once the school day started.

I want to pose a question to you guys. It seems like I'm coming across more moms on other sites that are citing behaviors that seem PANDAS like to me. Some are also saying that they are being told their child may be autistic. However, when I read their experience, I want to tell them to at least explore PANDAS and they owe it to their child to consider it before accepting the autism label. Most of these kids seem to fall in the 5-7 year old range. I always cite my own example how my son at 5 1/2 had to be screened for Asperger's even though he never fit any criterea before. By the time I had the appt w/ the psych, his PANDAS was in the tail end of recovey and they no longer even suspected Asperger's. These parents sound interested for the first few comments back and forth, but then I can tell they think I am off track. It's so hard to explain PANDAS and all the variations to someone who never heard of it before. I feel like I failed the child when I stop hearing back from them. Any suggestions? Also, lboll, the main PANDAS experts in the US will be speaking at the Autism One conference in May in Chicago. Should be very exciting and interesting.

Well, I would go back and have a throat swab rapid and culture done 2 weeks post meds. I am guessing she doesn't want to do prophylactic antibiotics or have you not asked yet? One thing you can mention is your concern that the amoxicillan may not have been the right antibiotc to wipe out the strep entirely. This is an article about the failure rate of amoxicillan.This may buy you a whole new prescription from her.Don't wait until that 2 week mark to discuss this. Try to have the conversation asap. You don't want to chance losing any improvement your child has made. http://www.entrepreneur.com/tradejournals/.../169459644.html I would also refer her to www.pandasnetwork.org. You can refer to it as a reference library on PANDAS. That site has a lot of info and a lot of studies are cited. Is your doctor in agreement on the PANADS dx? I so,you can compare it to RF and how RF patients continue abx use even after the infection is erradicated.

Let me see how to answer this. He gets a multivitamin in the morning that has DHA from fish oil in it. Then before bed he gets Omega 3 w/ DHA and EPA. On his night time vitamin, as I call it, there is more DHA in it than EPA. So, in the scheme of the entire day, he definitely gets more DHA than EPA. I give him it at night because I figured that's when the brain prcoesses what it has learned form the day, so that's when I want the most amount of Omega 3's in his system. What is about the Omega 3's that make the tics worse? They sell vegetarian Omega 3's that do not derive from fish oil. I wonder if that would help. My son never had tics.

That would be one way to get PANDAS back in the media spot light! Keep optimistic. I think all will go well for you.

I'm sorry you're experiencing a backslide. I'm going to address the Ibuprofen question. When my son weighed about 44 pounds, I was told I could give him 200 mg. For now, you can go ahead and increase the frequency and start giving it every 6 hours. I would think you can do that for at least 1-2 weeks. As for the dosing, how much does she weigh? Also, is she an older 8 or just turned 8? Eventually, she may start getting vaginal wetness because of her age.Some girls get a discharge for up to a year before they get their period. . I got my first period in the fifth grade. It would probably follow the timeline of when you got yours.

Yes, my son will have a PANDAS reaction to a cold. When it is during recovery from a strep triggered excaerbation, it was a worse reaction than when he was fully recovered. I would say for my son it isn't remotely as bad as a strep triggered excaerbation.Luckily, for him, the behavors subside when the virus has run its course. I give him Ibuprofen when a virus comes along.

It seems like I've been typing the word "Welcome" a lot, so that means there's been a lot of newcomers. Newcomers give me mixed emotions. I am so happy people are finding the support they need, especially when they thought they were alone because they were told their child was rare. But sad that yet another child has PANDAS. Anyway, I wanted to post a few very good threads that may be benficial to read. They, along with others, are pinned at the top of this forum for quick reference. PANDAS FACT SHEET... http://www.latitudes.org/forums/index.php?showtopic=6265 PANDAS FAQ (Frequently asked questions)... http://www.latitudes.org/forums/index.php?showtopic=6266 What OCD may look like in a child... http://www.latitudes.org/forums/index.php?...ic=6153&hl= Doctors by state (as suggested by this forum)... http://www.latitudes.org/forums/index.php?showtopic=6428 Don't hesitate to post any question you have. Everyone here is great at giving responses.

Welcome. Even though your child is on meds, have you taken him for a strep test once you started to see dramatic backsliding? Also, some PANDAS kids will react to exposure only. So, family members should rule out strep even if they do not show any symptoms. Don't wait until Feb to do this. It's simple enough to go in and get everyone swabbed. Have you discussed changing antibiotics with your doctor? Where in the US are you moving to? As for things being over your head, I've been living w/ PANDAS for awhile and been on this forum for awhile and I still get confused with tests and in depth conversations about the immune system. I think of myself as better with dissecting behaviors rather than figuring out the medical aspect. So you're not alone in that:)

Welcome. It just isn't acceptable for a doctor to say it's okay for a child to walk around with + strep tests. I would trust that swab first and fight for meds. If it is PANDAS, you won't see improvement until the infection is gone. Do the docs there simply say that a person who constantly tests + is a carrier and you don't have to do anything about it? Or is it that they'll give meds, but not sure which ones to give? I just want to know which kind of battle you will have. peglem will probably check this out later. Her daughter sounds like your son. She will be a wealth of info for you.

No, they don't. I do wonder if I didn't catch that strep infection in both of them so fast if things may have been different.

Sorry. I like to make things difficult. I'm surprised how many people don't culture other people in the house when their PANDAS child is sick, esp with a + strep test on the PANDAS child. Learn from me. I brought my family in every time my son was sick. That's how I found out 2 other kids had strep and were asymptomatic.

My son's main trigger is still strep. He also has viral triggers and seasonal allergies is a trigger. As for exposure only, I'm not sure on that one. I have not had it that someone else in the house that has strep, but not him. Also, when someone else in the house has had a virus, he's usually sick with them. Either right before or after. So, it's hard to say if it's him being exposed to a virus or if he's reacting to himself being/getting sick. That's something I will still have to learn. Stress is also a slight trigger for him. I guess I can say sometimes if it's something that would cause his blood pressure to rise, I see some very slight PANDAS. Not the OCD like that comes with strep, but heightened emotions and some unreasoning. The red face, tears, and slightly bulging eyes.I can still tell it's not typical 6 year old reactions. This trigger is not consistent. I wonder, at times, if it actually could be a learned behavior from me giving in in order to not upset him too much. I have noticed for my son that when a virus was the trigger, it was much worse when he was still recovering from a strep triggered exacerbation. I think it appears that the further we get, in time, from that last strep triggered exacerbation, his viral triggers are weaker and weaker. Boy, I hope my post wasn't confusing. I think it was.

It won't let me vote at all since I don't have a response for the third question. I can't answer the canary question because I have not been in the situation where a family member is +, but my PANDAS son is negative. So, I don't know how he reacts to exposure only. The only time the siblings have been +, my PANDAS son was also +. I did find out all 3 of my kids are asymptomatic. So, perhaps, you can add another option to that one? Maybe just "other (list below)"?

I actually get mad when they know I have a PANDAS child, they see him acting like a crazed animal and they still think they need a strep test. Obviously, he has strep. When he isn't in an exacerbation, he'll sit there and open his mouth for them. Not that he likes it, but he'll have that reasoning, "must do" mentality. That's gone when PANDAS surfaces. Once, I had to argue with them because they wanted to check his weight prior to the strep test and he refused. I was trying to tackle him to take his shoes off and the nurse just stood there. I finally demanded that they ask the doctor if they needed his weight. He just had it checked like 2 weeks prior. So the nurse finally left and asked. Came back and told me they didn't need his weight after all. I hate going to the ped's office. Had to chuckle here because that was my first thought as well! My son would normally submit to ANY medical test, but if he even THINKS a throat swab will be involved it's "GAME ON!"

I'm glad she is doing well! I continue to give my son Omega 3's and a vitamin that includes DHA. My theory is to keep the brain as healthy as I can so if he should get sick again, it will already be healthier. My son also has some PANDAS resurface with viruses and it seems like the further we get away from that last strep triggered exacerbation, the viral setbacks aren't as bad. God, I hope I don't regret saying that. I also continue to respect my kids' overall health and body more and continue to choose organic if it is reasonable enough and I can and dramatically cut down on what chemicals they ingest. I also keep hand sanitizer ready for whenever they come home from school. Also, keep Ibuprofen on hand and don't hesitate to give it if you think she is getting sick. I would think it's easier to keep inflammation down before it begins rather than backtracking. Remember that some kids have more triggers in addition to strep and viruses. Some will have an excaerbation due to exposure to strep and illness and when they have allergies. So, if you see some problems resurfacing, don't rule out those possibities.

And it's hard to get a good sample when it takes 4 nurses and a dad to hold a child down, pry open their mouth and actually get the swab.

Thank you for posting this! I may be reading this too early and I did not finish my second cup of coffee yet, so I will be rereading it later. Unless, someone wants to be a doll and point out to me something about other triggers post the original strep trigger occurring. Also, with the catagory over-reactive immune system, would those kids get classic strep symptoms? Can a child be asymptomatic with strep in both catagories? Dr T, my question would be what your suggestion is to a parent who lives in a state where doctors are told to be "followers" of an anti-PANDAS neurologist. And how one can convince these docs to give long term abx and something stronger than amox. Besides the answer to go to another state. Even though that's the ideal, it is not possible for all and we need to nip this ongoing problem in the bud and get through to these peds. Realistically, there are parents who will continue to take their peds' word as THE word and not do their own research. It's easy to say go somewhere else, but that doesn't solve the existing problem in the local med community. I'm also curious how many times do you think a child can improve with abx alone?My son has had 3 bad strep triggered exacerbations, but they all eventually ran their course with abx and time. I am left worried that next time, it won't be good enough. I'm just curious if there seems to be a cut off where abx respondent kids will reach their limit and need IVIG. He's been strep free since March 2009, but has had viruses since then.

Your ds may be reacting to the possible staph infection. I am aware of 2 kids whose first known exacerbations were caused by staph. Keep a close eye on your dd's behvaiors. I'm sure you are. What script did the ped put your dd on? And remind me, is your ds still on proph abx? Did the ped see your dd in person to rule out scarlet fever?