Ann280

What type of vitamins is she taking if any?

Yep carriers can infect a PANDAS kid. Also, even though the child in the car didn't have strep, her sister did, which means she was exposed. She may have had the bacteria at one point but her immune system successfully fought it off, so she didn't get sick, but that alone would still expose your daughter. The timing of your daughter's episode and the other childs strep infection would lead me to believe she was reacting to the exposure. When we were tracking my sons symptoms faithfully every day, we noticed very strong exposure pattern, which was why our recovery was taking so long. So then what do I do...this scares me terribly..Today I found out that 4 kids in my daughters class of 11 our out sick. then one today in my sons class. My daughter is on the zith right now but is this just a waiting game after??Wait until your child has an episode?

our Motrin protocol has been a dose per weight every3-4 hours during the day for three days. maybe every child is different. My daughter is 60 lbs and takes 200 mg...

Anyone in Central NJ would like to start a local support group ...This forum is great but it would be great to meet some locals to help and share info with.

I have been wondering this myself..Since my daughter rides in a carpool everyday with another girl whos family has had strep many times this year..The girls sister had strep confirmed two weeks ago..a week and a half ago my daughter has a major episode..but it wasn't the girl in the car with her that had the strep it was her sister..The family in general has major strep issues...can someone be a carrier to strep and infect a pandas kid?

Sorry to hear about your dad... I am new to the pandas world with my daughter and I have already experienced so many negative looks and comments when I bring up Pandas..My own pediatrician was pretty good in guessing it as a possiblilty , but the moment the tests came back "normal" she completely dismissed Pandas and said it was defiantely BiPolar. I didn't have enough info. within me to answer every question so that didnt help.. Even my doctor I went to this week for a strep test and I explained why it was so important to have this test and he was like what's pandas..I started to explain ,but he was no interested in the least so I didn't even bother. He actually told me that the fast test for strep was 99% accurate...What the heck..really..It just wasn't worth speaking to a closed minded doctor...terrible...But I guess if they studied every infectious disease they wouldn't have time to practice anything...that's my only guess..that's why there is specialists. Yes it stinks.

Thanks so much for sharing your response. Update as of today.... We tried the Motrin protocol starting last Friday, Saturday and Sunday with no response..we had the worst weekend with my daughter yet. She had incredible mood swings, bouts of depression, ocd (talking about the same things day after day) making videos of herself on her computer like 50 of them. so talkative I could not stop her. then the sleep problems..I do have her on melatonin and with all these pills it's getting harder and harder to have her take them so I missed the "right time"for the melatonin.she couldn't fall asleep started to bring up stuff about school that made her cry, then complain about her sister and why she is okay and she doesn't have learning problems etc.. then she went into that she was terrified to sleep in her room for fear of ghosts. (she watched a show with her sister a week ago called ghosts in Conn.) I didn't even know she did and she kept on bringing that up over and over so she slept in our bedroom. She hasn't done that in years..she is 10. I had a hard time waking her up for school as she was very defiant..sent her to school which was probably a mistake as I received a call telling me Ava was very upset and they had a hard time calming her down. Thank god there is a psychologist at her school which helped and she was able to finish the day.. On Monday I had a phone conference with Scott and he put ava on zithromycin 200mg 1/5 tsp once a day. And also predinsone on the 4, 5, 6 th day all the while continuing the 10 day dose of antibiotic. I gave her a antibiotic dose Monday at 6 am and gave her another dose at 7 am Tuesday instructed by Scott. Ava carpools with a teacher and another student each day and she has been driving the other girl in the car crazy. When finding this out I called the mom to apologize and explain our situation. Later in the day I got a call from the mom who had went online to look up pandas and she proceeded to explain to me that her family has such a problem with strep that the average family that gets a cold and her family gets strep...over 10 times this year between her four kids herself and her husband. Her daughter whom drives with my daughter each day two times a day even had her tonsils out because the strep was so bad(since she was 3)... okay so at this point chills go to my body thinking omg I think this could be the reason all this time we have been having issues...my daughter has been exposed to this week after week, month after month. Ava's major episode started approx two weeks ago at this point and the mom told me that is when her other daughter had strep. Can this possibly be the cause?? At this point her daughter that drives with mine has had stomach issues for over a week and a half and her mom thought it was strep, but brought her to get tested and it was negative at the time, but because she has had so much experience with it she says she has no doubt especially after hearing Ava's episodes that her daughter has strep. She says she has had strep tested in the past neg went back a week later and tested positive. I told her to get the titer test? So now I have no choice, but to drive my daughter each day to avoid exposure. Yesterday on day 2 of the antibiotics she was hyper in the am, all over the map..in school she was talkative...on the ride home with her carpool she was very talkative and annoying to the other girl. I spoke with Ava explaining that she hurt the other girls feeling in the car and that it wasn't nice she asked me ON HER OWN to call her up and apologize. Later in the evening she was a bit better...i noticed she was able to concentrate a bit better with her homework her tone of her voice was lower. I would say about 50% of better. So last night after overhearing some stuff, I ended up telling Ava last that it's a possibility that she might have Pandas and I explained as best I could for a 10 yrs old what it is. She was upset, but somewhat relieved that there might be a reason for the way she can't control herself. I asked her if she knows sometimes that she is acting hyper and saying things that she normally would not and she said sometimes after she knows but she couldn't stop. She was upset wondering why everything happens to her and her "brain" learning disabilities etc.. I told her that we are going to try to take some meds to see if it might be able to help. She understands that she has been taking lots of meds, but not exactly the reason for it. NOW did i make a mistake by telling her about PANDAS? because this am she was up early but acting much better not 100% but I have to also understand she is a 10 yr old as well. In her car ride with the carpool (because the other girl didn't go to school...mom probably bringing her to doctor ) her teacher in the car said she was great,she explained to her teacher that she may have pandas and described it beautiful...she was calm , had normal conversations etc... COULD TELLING MY DAUGHTER SHE MIGHT HAVE THIS PANDAS HAVE A PLACEBO EFFECT ON HER TODAY????HELP THIS AM 7am was her 3rd dose of antibiotics..

This sounds terrible, but the fact that psych meds tend to make PANDAS kids worse can also be somewhat of a self-dx tool. My son is PANDAS - clear cut, classic case. Our dr was on the ball and he never went on psych meds. I have a cousin who is bi-polar. When I found out about PANDAS I immediately called my aunt and we talked all about it, turns out, her son didn't quite fit the PANDAS dx with his symptoms. They have him on a low dose medication (it slips my mind which one right now), and it worked immediately, with no side effects. He's been treated for bi-polar for about 3 years now, and they haven't even had to adjust his medication after they found the right dose a couple months into treatment. The other inconsistencies of his case vs. PANDAS aside, whether or not psych meds work for you or not can be an idicator of what you may or may not be dealing with. No medical proof - just my opinion! Thank you for the great info. We had a very very bad weekend...the worst we have ever had...it has been so emotional for me watching my daughter go thru all this. The motrin protocol didn't work this time. As of now Scott prescribed 10 days zithromax and on the 4,5,6th day prednisone. While still taking the zithromax. Today I found out the girl who my daughter car pools with has a family who gets strep like a family cAn get a cold. The mom was so helpful to me explaining that her entire family gets strep many times throuout the year. Whats crazy is the girls that drives with my daughters....n sister had strep 2 weeks ago and her mom thinks she may have strep as well. So here my daughter has had her worst symptoms yet Nd she has been driving in a car twice a day with a girl who most likely has strep... she even had her tonsils Removed. Today Avas behavior was still not great in school. She has had two doses of antibiotics . I do feel however that tonight is a little easier..I hope tomorrow is better. I'm really glad there is a place to ask questions and get great help from other parents or people suffering from pandas.

Thank you! how do I get to the online talks? Also I know I'm stuck on this but why do you think it's not BP since it's seems like the exact same symptoms...doesn't BP come and go also? I fell like I am getting obsessed with all this because I just want to make it all go away..silly, I know.

Hi, I ordered the tests from docsavings.com. The brand that I like is the Acon twist device/ or test cassette. It's not the strips. They are around $32 for 25 tests, and with shipping I think it comes to $40. Kbossman1 recommended this brand to me. She has used them several times and said they are reliable. I have only had to use it once, but it was relatively easy to use. My daughter does not get sore throats with strep infections or any other obvious signs for that matter. Behavior is her only symptom, usually urinary frequency is her first symptoms. The ones I ordered expire in 1.5 years, so I figure I can swab at any sign of odd behavior. It definitely gives me a piece of mind just knowing I have them. Hope this helps! Thank You! So when you notice the symptoms and you do the test do they usually come up positive?

Just curious as I have heard of them?

BTW none of the family has been tested for any strep...That would involve blood tests right?

okay thank you so much......So I guess I just tell Scott that I want antibiotics?? I don't know why he didn't give them to me yesterday..I should of asked I just get so confused with all the testings results and terms. I Keep on second guessing myself into thinking is it the antibiotics/ motrin/ vitamins are helping or is it BP and it's just gets better after those couple days later. I know the symptoms of Bi-Polar are so so similar ...that's whats scares me. She did see a psychologist 3 times and he said it's Bi Polar and she was born wired differently, but when I brought the tics that started in the summer and the "all of a sudden onset behavior he sort of fluffed it off and when I told him I saw a pandas specialist and she was on some vitamins. He became irritated. After looking back at all her records she only had strep 2-3 times and over 10 ear infections. Today she has not been able to settle down she is writing stories, dancing to music over and over.singing...watching weird infomercials..Wants to cook..all these ideas keep popping into her head. (some of it is a 10 yr old but I'm starting to get confused on which is normal and what is not) She was Depressed two days ago but yesterday and today totally wired and annoying at home and to her teachers. In school normally she is the child that follows every rule and does her very best all the time, is sensetive to everyone's feelings.... her teachers say lately she doesn't care which is totally out of the norm. BTW I called and emailed Scott that I wanted antibiotics we will see. How long a Motrin protocol do you usually notice a difference with your child?

Acutally left out that when I went to see scott smith during the "2rd episode" I had some amoxi and started her on that on my own before I found Scott because my doctor was so against the pandas with the negative testing..she said it's bipolar..I doubted she would give me another dose. I'ts just there is too many coindences with the antibiotics the first time the motrin working..onset acute symptoms... I think my friends think I'm too focused on Pandas ,but I have a gut feeling on this. Scott wants to do the motrin protocal first to see if that helps...I really don't know why he didn't want to put her on another antibiotic ? Possibly to see what is working and what is not? This is so so difficult for our family and I am so sad for my daughter...she is not happy inside and is aware at times of her behavior and apologizes later, but can't help it. She takes all these vitamins every day and rarely complains becuase she wants to feel better. She is a strong amazing special little girl. When she has these episodes I get sad like my sweet Ava isn't there. WAS THE IVIG HELPING?

I can't believe I left out.... anxiety was on normal days she is just a worrier, but on the bad episodes she was in a more carefree mode...

I did't do the Cam Kinese test yet. I waited to long and now it's closed out for a couple weeks. I will have it done ASAP..My name is on the list. Do you ever think of BiPolar? What does the number tell you in regards to the Cam kinese test

I have a ten year old Daughter that has had onset acute major symptoms since May of 2010. She has always been in the catagory of a "difficult child" more to me a special kid. Very loving, beautiful, athletic, kind to everyone, always thinking of others. She was a colicy baby, but had normal milestones, she potty trained early, but she had delayed speech which she was classified speech delay. She had therapy for that. At 2 yrs old she changed. She had major separation anxiety, temper flare ups, Sleep and night terrors, she would fall asleep in the next room next to us so we didn't know on chairs on stairs the floor. We thought it was just the "terrible 2's" and let it be. She continued to have learning delays and Sensory processing disorder, which we had therapy for years. She sucked her thumb so that really helped her cope with everything.. She was friendly had lots of friends, sweet, never mean to anyone. She just got upset easy and wanted to be with me all the time but never nasty. Between 3-7 she had some ocd stuff going on like she was very clean, she didn’t want to sip out of spoons forks or bottles of anyone, she got grossed out being dirty. She liked her clothes a certain way. She got grossed out from milk because someone told her she had milk breath that she gave up milk products for over a year. She could never play games with her brother and sister she would give up or start crying.. Forward to 9 years old , she was continuing on having difficulty at school so we decided to enroll her in a school for children with language based learning differences. We thought this was the answer for everything...although the school has only 60 total kids it has helped with acedemics ,but hurt any social normal life for her …having 6 girls in her entire grade and living 30 minutes away makes it hard. Ava has a brother 18 months younger and a Sister 2 yrs older. Ava is very aware of her learning differences and has many issues with the fact she knows her brother and Sister do not. .. In May of 2010 Ava started to have these tics that started in her eye then her neck then her shoulder they changed every couple weeks. The doctor said it was normal and would most likely go away. Mid October she came home from school like she was high on speed...talking fast..Obsessing about stuff on the computer watching it over and over; regressing like a 5 yr old with touching things in stores, starting trouble with her brother and sister. She wouldn't go to bed. She had all these ideas popping in her head doing art projects out of the blue just totally off things... we thought she was acting like that because of attention during a family party that was going to take place for her sister. This all happened again a month later...worse speed like behavior..ocd...Crying/depression..sleep trouble.a two step tic with sound. The school called me and told me to call the doctor she was totally not herself....called the doctor and They thought it was one of two things...Pandas or BiPolar. When I got home and read about pandas it was like a light when off and everything matched her exactly. The testing was neg on the strip and the other test to the labs took 4 days...i told the doctor from what I read put her on antibiotics I have nothing to lose. 3 days later Ava was perfect..I kept her on the antibiotics for 3 weeks with no issues whatsoever ( * her lab results were normal no strep in system)...3-4 weeks after the antibiotics it all started over again with another episode that's when I went to Scott Smith the pandas specialist..he read her blood and determined that she did fall into the pandas catagory with all her onset acute symptoms...her test results showed normal ,but he said many kids have a negative result. He started her on probiotics...fish oil...taurine...melatonin for sleep..magnesium..and nystatin and vit D( which she refuses to take).and a motrin protocol. I thought all the vitamins were really helping ,definately with the tics...but she has had two other episodes since the start of meds. I used a motrin protocal again and I did notice a difference within 2 full days...now with this recent episode which now I find out she is having urination issues during the day at school (she never mentioned this to me it’s been happing for a while now)..I just started the motrin protocal..I spoke with Scott Smith this am and he adjusted her meds with a low dose of steroids (spinal lactrom and another probiotic (cuterial sp). Sorry for the long letter, but My question is how many kids truly have this PANDAS without positive tests? Could this be bipolar? I’m really confused…and I was too late for the cam kinese test…I should have had it done months ago..i just was putting the whole blood test experience off…my mistake.