JDuffner

Rachel thank you so much for this! I'm listening to it now.

for those that missed it http://www.bing.com/videos/watch/video/chronic-lyme-disease-what-you-need-to-know/17wnx6lma?cpkey=a0abe1e1-76a7-47d4-85f1-b718f15310a1%257c%257c%257c%257c

http://www.medicaljane.com/2014/05/28/study-cannabidiol-cbd-may-help-treat-social-anxiety-disorder/ CBD in cannabis which is what is being used in Charlottes web on kids in Colorado is not the same as Hemp CBD. It is also not psychoactive, yet has small amounts of THC and can upset the stomach. dosing should be slow and organic tinctures only but it works http://steephilllab.com/thcv-the-sports-car-of-cannabinoids/ there are over 80 cannibinoids in the cannabis plants being isolated for a variety of medical uses. http://patients4medicalmarijuana.wordpress.com/medical-use-of-cannabis-video/marijuana-tincture/ http://www.mtgseeds.com/about/ http://www.medicaljane.com/2013/11/25/unconventional-foundation-for-autism-advocates-for-families/

http://www.medicaljane.com/2014/05/28/study-cannabidiol-cbd-may-help-treat-social-anxiety-disorder/ CBD in cannibis is not to be confused with cbd in hemp http://steephilllab.com/thcv-the-sports-car-of-cannabinoids/

Ok you ladies I have my heAd spinning now reading all the latest threads as I've not been on in a bit and I have brain gig and short term memory issues (see below) My dd11 Kawasaki's PANDAS kid , c677t homozygous, (and I) have both been sick intermittent. Mold was a issue in our house in Seattle. Like SFmom they ripped open a wall in August to find black and white mold. I had been sick for toe years with bizarre ailments. Dd was holding her own due to incredible naturopath. Moved to Santa Cruz, both if us have been consistently ill. I have hAd a bizarre rash show around my thyroid every other month for seven months. Brain fog, exhaustion, night sweats, weight gain (I never gain in last four months +12 pounds zero energy normally work out 3x a a week) gut issues, swollen joint. I kept Attributing it to stress, thyroid (I'm hypo) and menopause (forced early onset by a mirena IUD years ago that have me recurrent strep and UTI bouts had to see infectious disease Dic month long and course) Dd has been sick every month with a cold. January /feb pneumonia asked doctor could it be mycoplasma (we have new gecko and new pet rats) he just hit her with antibiotic. Dd started having major joint pains and muscle aches etc in January. Read about pain and doctor prescribed omnicef doc put her in Monday at my in distance. Called back Tuesday as she was 102 cough snotty, asked for mycoplasma fix said not necessary. Question how do they test for mycoplasma? Blood, sputum, what do I insist be tested? Can we be passing back and forth? Will the antibiotic schew the test results now that she's been on for four days? Strep keeps showing negative. Could it be new kids at new school? (Small only 40 kids) considering homeschool at this point as it's been too hArd in her system. Anyone have GOOD doctors in bay area thAt are proactive in treatment protocol? On wait list for July for Stanford PANS clinic Seeing Amy at North hill integrative in Petaluma who has a pandas kid and is Pandas director there next week will discuss possible Lyme, etc. which we've not broached either. Should i have new animals tested ? Any guidance HELP! Or assistance is much appreciated!

Julia- WhAt does GCMAF stand for and how did you address bacteria and fungal prior?! We just moved from a house with mold. Dd still suffering monthly illnesses.

I'm assuming ?

Tonsils and adenoids

Also check your probiotic make sure it does not have streptococcus in it as some PANS, PANDAS kids react.

I'm going. My DD is 11. Kawasaki's and PANDAS. Moved from San Fran to San Antonio (KD DX) to Seattle (pANS DX) just moved back to NorCal area again. Let's meet up there?

Michael- question for you. Did you test for EMF's after you installed the Harmonizer, and cell guards?

My DD is a Kawasakis, Pandas (I think PITAND) and double c677t MTHFR, would not sleep in her old room in Redmond, WA. Same as the laptop story above, each time I asked why she said she did not now but the room made her sick. Her amazing ND, Dr. Kim Kacoroski in Kirkland Washington told me three years ago take all electronic devices out of her sleeping environment. She also said to pick up the salt lamps for her room and her computer devices. She also told me of a environmental shield spray that she gave me to spray all around my house inside and out after the Tsunami in Japan because it was inevitable our environment and water would be effected. The spray would help the climate, terrain, plant life and the animals to survive since the radiation would deplete many things. Having a good outside and inside environment would benefit my DD. It worked. We lived in a residential development of garden style homes. Our small yard was blossoming and suddenly mallard ducks were showing up on our lawn to nest. Bees were everywhere. bunnies, baby bunnies, raccoons, squirrels, woodpeckers, blue jays, hummingbirds, all living in harmony on our little itty bitty lawn and shrubs. I will have to get back to you with the post on the exact product. She had me put uranium nutricum 30 c and radium bromatum 200c 2-3 tablets of each into the environmental mixture she gave me and spray. My DD's amazing OT JacQueline Watson Bellevue, WA told me two years ago about the GIA Wellness chips and to put them on everything like Michael is saying. She said it helped her with everything including her skin rashes. We also found out two months ago that the very nice high end house we were living in did indeed have mold and had to be remediated. Five years later, we have moved to a new home in Santa Cruz, CA. I thought what could be better we are at the beach, fresh air, get away from the mold.....wrong. Thank goodness I read this thread again. We moved into a townhouse development. I'm sure I need to shield everything. I'm sure the neighbors are all plugged in! We moved in with her dad and he is a hi tech gadget kind of guy. EVERYTHING is wireless. EVERY room has something including those pod chargers everywhere! Ironically her school which is unplugged said "we notice she makes noises (vocal tics)" and her father just the other day said "I notice she's ticking (eye blinking) more then I've ever seen her do it before since moving here." Bottom line, it's back to shielding, unplugging, etc. Thanks for all the links, tips and reminders!

First, I'm glad to hear that she is improving! I pray you have a peaceful blessed Thanksgiving. Have you seen Doctor Kim Kacoroski, Dr Keller's Homeopathic friend? I went to her today and she spent 1.5 hours with Belle. She did muscle testing, etc. What she said was very similar to what this Immuno guy said to you. She said my dd's issues are at the cellular and membrane outside the cell level. She said my dd's primary issues are inflammation, digestive and anxiety. She did not find "strep" in her or any "virus." She said that dd was another "cool kid" (Keller's nickname for these kids that are out of the box) and that my dd really wants to heal herself. She believes it will happen pretty quickly for my dd. She gave us six different remedies. The ones for the three primary issues I mentioned she said were "acute" and have to be taken 5 times a day. We see her again next week. and the following week. She is proposing we will see huge improvements in my dd in the next two weeks but that follow up will be ongoing and remedies will be quickly changing as dd heals. She mentioned in my dd's case not moving forward with IVIG for two months but rather take it slow and steady and keep testing as the remedies start working. She said my dd's issues with OCD, Tics, processing, fine motor and behavior will start fading as the inflammation rememdy begins working. She gave me a remedy for the cells to because she said my dd was blocked and nothing was gettign in, especially the magnesium she needs to stop the tics. She takes our insurance, just not for the actual supplements and remedies. She also recommended a chiropractor that Keller knows, Dr. Gross, that works at the neuro cellular level. He has been doing work with kids on the spectrum, people with PSTD from Vietnam, including himself and is making marked improvements with his patients.

Currently my DD6.5 is seeing her Pediatrician who will treat her and do testing. She is also with a OT and a Homeopath. Just trying to find out, how many of you go to a Immunologist and what do you feel the benefits have been for you? Thanks!

I'm trying not to laugh because the subject matter at hand is all to real for each of us. Yet at the bottom of my ACN screen are the following ads under this thread: Therapeutic Options Positive approaches to preventing nd managing crises of agressiobn www.therops.com Good Manners = Good Kids Teach your kids better manners Buy amazing advantage dvd today! www.amazing advantage.com ' 1-2-3 Magic Parenting discipline without arguing, yelling or spanking guaranteed results www.123magic.com Wow....if these guys only knew. So I am relatively new to the board. To introduce myself, My DD6.5 had Kawaski's with IVIG at age 3 and now PANDAS age 6.5.....looking back week by week at her medical records, emails,. etc....it could have always been strep...grrrrr nasty frickin bug. I am thankful to each of you that have given me hope over the last few days in reading your posts where you have come and where you are heading...I am still learning the ropes of all the tests, what they mean. My DD did have Cunningham's test and her Cam Kinase was 172. I am thinking of getting myself just to see. You have all without knowing it given me so much invalueable information in all your postings. Many times I see pieces of my child in each of yours. I do think there may be something genetic. Dad has ADD. I have auto immune (hypothyroid). We have been doing Zithro 200mg 2x weekly and increasing to daily when she flares with illness (which has already been four times in the last 60 days). Two weeks ago we saw a huge improvement and new kid on prednisolone for five days. Yet it's one step forward two back.....Friday she started with a cold which has is still present today. Today she started with OCD "mom and I doing a bad thing" over and over again each time she moves her fingers and "mom did I say a bad thing?" when she has said nothing. she had multiple melts today. She raged more when she was 3 and 4. Today it's more like the meltdowns spiraling out of control where it as if she does not even know what she is saying. I've done everything you have each posted I have given her the Zithro daily and added Motrin to the mix today. I'm sad because I see behaviors trying to creep in and I want to scream from the top of my being go away and leave my little girl alone!!! If only these ads knew what we know.....there is not a cookie cutter method.....

PS. I talked to Dr. Keller on saturday about Changing B's meds from Zithro to Augmentin XR. She is getting with the pharmacist to get the correct dosing for her (45 pounds 6.5 years old) and we are going to try it as the Zithro made only a differnece the first 8 days then stopped. Have you guys tried other oral antibiotics?

Today is a Do-Over day! New Day! Hang in there!!!! SF Mom said that Corsa was having a sensation in symtpoms and luckily they had a IViG already scheduled as a follow up with Dr. K in Chicago. She said after IviG number 2 Corsa was mega hyper. Maybe Corsa and your daughter had IViG done during a episode. Since we really don't know what is going on inside their little bodies.....perhaps as I like to explain it to B, the Pink Pac Men (the good ones) are raging to eat the Green Pac Men (bad guys)....maybe it's a good thing and Pink will win this time! Think about it like how they rage every time they get sick...just reverse order of Pac men occurs. I don't think the IViG shut off, what if it's working? What if it's shaking things up in there? Belle is one week out from the steroid boost. She was a different kid last week. Processing everything. Yet she had a fever on friday, today she has a mild cough and had a rage this morning not wanting to go to school, I'm the worst mom ever, etc. I did motrin, Zithro like everyone says to do. It helps, but I can tell the steroid is wearing off. I have to have faith that if we start homeopathy on Wednesday to detox her system and rebuild immunity and start rounds of IViG with IV ABX we will eventually get rid of the deposits Dr. K explained to Corsa's mom are still present in the basal ganglia. What if like a staph or strep infection on the skin, the deposits in the brain are going to take multiple rounds to inilelate? What if it's layers of deposits we are peeling back and the nasty bugs are now being shaken up? You have to continue fighting them and it seems that IViG with IV abx would be a great way to do that. Remember the last time you did not have the IV abx right? What if they IV abx needs to stay in longer?? I have a girlfriend that just came off a breast infection from a cancer surgery. The Infectiuous disease guy in Seattle left her IV in for 30 days two rounds. What if it takes that long to kill these bugs/deposits? You said her she spiked into rage after the IV was taken out....... Keeping you all in our prayers

Wendy, I can't thank you enough for all the information, especially just coming off a chicago trip and IVIG! When Belle was three and they were talking titers, sed rates, etc....I thought it was all over...then moving to a different state they kept pushing the vaccine issue (she will NEVER have another vaccine, her curernt doctor agrees). So Romy and Corsa are both considered PANDAS? I guess what I am trying to figure out is did Adrian indeed have KD undiagnosed? I thought they "say" KD is not contagious and rare for siblings to get? I'm trying to figure out the KD/PANDAS connection. The last question for you. You mentioned "TICs are harder to get eradicate via IVIG. Corsa was exposed to Strep at his school about the time we saw a slight increase in behavior although I suspect the first IVIG didn't fully do the job. Dr. K recommends with older children that have primarily TICS to do PEX with follow-up IVIG." What constitutes "older children?" Belle will be 7 in March and she is still having tics (nose sniffing, some vocal, some finger flicking at times). She has anxiety, chews on shirts, etc. I'm trying to figure out what additional tests I need for Belle before moving forward and would she be considered a candidate for PEX first according to Dr. K or IVIG first. Jacque

Wendy, First let me say I am sorry for everything you are going through. I feel your pain and understand it well. Wow, that sounds a lot like my daughter Belle (dark circles or red under eyes and chapped lips all the time). How old is Corsa? Belle is 6.5. She has Kawasaki's at 3 and underwent IViG. Looking back through her medical history though, I think she had her first exposure to strep at 9 months, her first confirmed case at 2.5, she had a Hep A vaccine 20 days before KD, 10 days before KD she had cellulitis in her hand. Her kD symptoms were not typical. High fever (104.7), raspbery tongue, red eyes, rash only on her toes, knuckles and elbows, sed rate was 129 during KD, platelet was 441, can't recall creative right now I need to look it up. They had her on high dose aspirin on day 1 and IViG on day 4. No heart implications, they believe 3 years out........ Yet for the year after KD she had many healkth issues, joint pain, gut pain, hypothermic temperartures of 94.4, pupil dilation, explosive behavior, etc. A year after KD she had at least 3 episodes of Strep. Since the age of 2 I think she's been ill every 15 days. She always had episodic blips and explosive behaviors issues, but everyone kept attributing it to sensory. A year ago she had another Hep A shot and with 5 days started with severe motor tic, vocal tics, body jerks, OCD, ADHD type behavior, mood lability, talkative, hyper, night sweats, explosive behavior and a slow regression in fine motor skills and memory loss. After a year of being sent to specialist after spoecialist and everyone saying it was nothing....we just got the PANDAS diagnosis two weeks ago. Her Cam Kinase was 172. She's been on Zithro 200mg twice weekly for five wekes now with no real improvement. Last week she went on prednisolone twice a day five days and there was a huge improvement. First time she was able to write a story in class, first time she was able to verbally explain a math problem sequentially in class. Two days ago she read a 46 page 4 chapter book. Her self esteem is low, her anxiety is high. As luck would have it she started with a fever two days ago. Today she is having more behavior issues. I met with Dr. Keller yesterday and we are going to push forwrad with IviG and IV Abx. Did Dr. K do IViG with IV Abx on Corsa? How often does he feel Corsa will need IViG? Did Corsa have any lasting ramifications, heart wise, from KD? Why does Dr. K think Corsa was so hyper after the second round of IViG? Belle is like this and has a super sensitive consitution when it comes to anything other then homeopathy medications. She's on supplements, a GF/CF diet, no food colors, etc. Does Corsa have a IEP at school? What IViG did Dr. K use? Did you just call to do the first consult? Belle's godparents live in Hinsdale and if the route with Dr. Keller does not work we may want to consult with Dr. K. Thanks for all your help!!!

Hey Elizabeth, Can you tell me in a nutshell what the document you posted on the prevnat vaccine said? I can't pull up the link. Ironically my daughter had three rounds of streep one year after KD diagnosis and IVIG. They pulled her titers and found the noeummococcal vaccine did not work and gave her prevnar...now I'm worried based on your comments. JacQue

Hi, Elizabeth told me that your child had KD as a baby and now possibly PANDAS. My child was diagnosed at 3 with KD underwent IVIG...now new doctor thinks at 6.5 it's PANDAS and could have been RF all along. Can you tell me what you've found out about the link betwene KD And PANDAS? Elizabeth also mentioned Dr. K has extensive background in KD? Is this true? My childs god parents are in Hinsdale and I could potentially go there if I needed to for treatment. Thanks for anything you can provide! Jacque

Sorry, I thought my post was only going to you not the entire board,! That's ok if anyone learns anything from it. Also sorry for all the typos....Wow! I'm really new at all this! I've omitted much of my daughters behavior stuff you refer, but am all too familiar and expereinced my days of kicking, screaming, head banging against the wall, harming the pets. The hardest part for me these days is seeing the complete fright suddenly in my once fearless highly social optimistic child's eyes. I'm keeping all the little ones in my prayers. ...quote name='FallingApart' date='Nov 18 2009, 07:31 PM' post='45499'] Hello parents, This might be my first upbeat post in some time. Sorry to be such a downer here lately. Here is a quick update and then my asking for your thoughts on our plan. DD is a total nightmare as you all know. She has even deteriorated at preschool which is/was her one safe haven. Her teached told me today that she has gotten progrssively worse since our return from PEX. I met with the ped today and the ped told me there is no way that DD has schizophrenia. She also spoke with our neuro psych who confirmed the same thing. My jury is still out on my anxiety over that but it was good to hear. The ped is equally as distraught as DH and I that PEX didn't work. We decided to move forward with IVIG because it is the one thing that has worked for us in the past. However, my confidence is shot as to whether it will work since PEX didn't. I have all these doubts that maybe we are just doomed and will never improve, etc, etc. You have probably all had these moments. We are planning on going back to our local hospital tomorrow for the 3rd round of IVIG. DH is distraught over having to do another procedure to our sweet daughter. She turned 4 during PEX but still doesn't know it. We were going to celebrate her birthday this weekend but she is too unstable to do so and so we cancelled it. When DH and I were talking he said that some forms of PEX include IVIG in them. He wanted to know if anyone on here who had done PEX and been successful had done IVIG with it. I told him that I didn't believe anyone had recieved IVIG with it. All the sudden a lightbulb went off for me. I do believe that we have one of the most extreme cases. WE have had an almost 12 month long exacerbation now. I am wondering if just removing the antibodies wasn't enough. Perhaps whatever virus she has is so deeply rooted that her memory cells went right back to making the same antibodies. Then, all the sudden I thought about IV antibiotics. I immediately called our ped and told her my thoughts. I am more of an expert on PANDAS than she is but she was very excited and completely agreed with me. The plan tomorrow is to do the IVIG and add the menengitis IV antibiotic. That is a 3 day dose so we will leave the IV in her hand and will return to our ped after our release from the hospital for the final dosage. I'm putting this out there as perhaps an education to new parents and to see if anyone has any thoughts or advice for me. THe IV antibiotics came from you all and I really appreciate it. Anything else you have to educate me on is greatly appreciated. Thanks!

You and your family are in my prayers. Ironically I was thinking similar with my Daughter, in the homeopathy paralell with IVIG. I pray IVIG and ABX work!!!! Hang tough!!!

Hi, I just learned from Dut that I believe you and I have met before in Woodinville. I am so frsutrated as I just wrote Dut a very long case history on my daughter and when I hit send the website said it was overloaded and lost it!!! Like we have TIME as moms of PANDAS kids!! Anyhow, I am inclined to believe I was the mom at the OT Center that helped your youngest while you watched your 4 year old in the parking lot. I believe we met again in the lobby at Dr. Kellers. My daughters medical history is extensive. In a short nutshell, for years they diagnosed her with another illness (which it could have possibly been or now I think it may have been Rhuematic Fever or Scarlet fever) and the only known treatment was IVIG done once at age 3 to save her life in Texas from vasculitis that was occurring in her body. I could go on and on about the symptoms since that time. In 9 months we went to Gastro specialist with stomach issues, Opthamologist for any hidden underlying issues (does anyone elses kids take 4 days to undilate from the eye meds?), rhuematoid specialist for joint pain, cardiologist for heart palipitations and Kawasaki's related checks, electro conductivity specialist for the same, ENT for constant fluid on ears without infection, ENT for recommendedation to remove tonsils (not done), Allergist for reactions to medicatiopns, environment, sudden onset respiratory issues, etc. After a two hour entry exam with Keller, Keller believed this was PANDAS, I felt in my heart it was PANDAS. I had strep while beastfeeding. I had a autoimmune disorder (hypothyroid). Her Dad has not admitted but diagnosed ADD. My daughter always had a sensitive constitution. Major reactions to vaccines. Immunity issues, she caught everything all the time. She had a dystonic seizure to a medication they gave her at 6 months for what they thought was GERD! At 9 months I had to take her to a Homeopathy doctor for a rememdy to colic that she had had since birth. It was then cured by age 1. Yet she looked and acted "normal" according to friends and doctors. The melts that to me seemed so major and out of control to them seemed developmental. The inability to sleep alone was easy because I was a attachment parent...thankfully It also saved her life on several hypothermic nights in her future. My daughter had strep at age 2.5 at Baylor in Texas. Four months later at age 3 was administered Hep A (there are known cases on vaccine administration and links to PANDAS on Dr. K's web site) and within 15 days labeled with Kawasaki's undergoing IVIG to protect her heart from aneurysyms. For years I have dealt with emotional, behavioral, sleep, educational and immunity issues. Everyone, including close friends and family believed it was behavioral. I felt like I was always being judged. She has always been on the mega hyper mode which other attribute to "her getting naturally from her parents who have endless amounts of energy." Yet my child is also super social and well liked. Incidents that happend once a year liked horrible "bitings" or explosve punchign outbursts" were just considered behavior that needed "modification with things taken away." Times out never worked.....I never realized I was doing it, but from early on I was doing ERT with her...she got "calm down" times instead because nothign else worked. I taught her deep breathing, I held her like my mother had taught me, tight until she calmed. Ages 4-5 were relatively calm after IVIG, but behavior issues were present. The worst was she contracted strep at least 4 more times. Age 5 brought a move to Washington and marital issues. The move from unkown caused her severe stress. Everyone attributed her inability to transition to home stress and move stress. I always knew in my gut there was more. She continually cried when I would leave her at Eton. I now realize the child had anxiety for years. Age 5.5, last summer was the big hit as I like to call it. A doctor at Pediatric Associates insisted I administer the Hep A again for school. I should have resisted. My gut told me to! 10 days later my daughter was suffering the first of many severe motor tics, body jerks....over the last year we have noticed major regression in fine motor ability, reading, art...I have documented evidence. I began supplementing immediately with ALA, Selenium, etc. I took her to a Chiropractic Nuero asap. He saw the tics, he put her on a GF/CF diet and had me read Ritalin Free kids amongst other books. I have spent the last year with her at Nuerologists, Chiropractic Neurologists, Naturopaths, Homeopaths for rememdies, OTs, Tutors. Yet the doctors at Ped Assoc refused to acknowledge she had any issues. They sent us for EEG and dismissed any tics by the Nuerologist as normal. 6 months later (january 2009) Eton began noticing last spring major regression in her fine motor ability. I sent her to Dr Kristi Kwon in Bellevue for Cognitive testing because everyone was saying "Eton is not the right school she is super smart, you have her in the wrong environment and home stress is why this is going on." She interviewed and was accepted at St Thomas, Chestnut hill Academy, Eton, Sacred Heart, The Little School. Yet she could hardly write suddenly, her drawings were becoming scribble, she tired easily was easily agittated and frustrated had a reading regression from chapter books back to level 1 and bobs books...I saw the damage occuring and it scared me! Dr. Kwon tested her using the Weschler in April on 2009 and her scores 98% above her peers yest there was a disconnect were processing ability. Kwon and others advised putting her in sa small structured environment or poublic school. They felt Montessori was causing the issues. They advised OT would help for fine motor issues.... May 2009 started at the OT center. June diagnosed with Sensory Modulation Disorder...but they were not 100% convinced. Spent entire summer there. September purchased the ILS system and began using it at home. Her physical symptoms wax an wane with viruses, yet the scariest for me has been the regression in ability to read, write, draw. My daughter was just diagnosed two weeks ago by Keller with PANDAS after the Univ of OK bloodwork came back well within PANDAS parameters. I remember telling you that day in the parkign lot at the OT it will get better....it will...but you may not have seen the worst. and I will not sugar coat the days ahead. I now question if this is not only environmental and bacterial, but also genetic. My nephew (age 28), my sisters first child, had all of this and THEN some and was raised by my parents from age 4. He would throw up daily on the way to school. My mother had to work at the school to keep him there. He could not tolerate steroids, he had OCD on multiple levels, he had 13 cases of strep in one year. He was diagnosed a "carrier". I am sure he is and was PANDAS. He underwent CBT for years. He had a genius IQ but inability to write. He had staring seizures. He self medicated and experimented on himself as a teen as he was super smart (the only thing that worked...forgive me for saying this... was marijuana apparently to alleviate the anxiety). At puberty (they say girls outgrow it more often then boys) he had two or three suicidal episodes and several episodes of schizophrenia after the doctors gave him Accutane for the acne described on this website by some of the others. My daughter is the same. She absolutely CANNOT take any medications that opthers kdsi can take. Homeopathy is the only route for her. He suffered dibilitating anxiety for years yet my mother pushed him forward. He treated himself with GF/CF diets, homeopathy, you name it. He eventually graduated with a LPN at age 24, met and married an RN at 25. Had a tonsillectomy at 26. Has had horrible weight gain from all the medications yet at age 28 is happily married, owns a home in Charlottesville, VA and works when he can when his anxiety does not overcome him and will soon become a stay at home dad. His story shows me that unconditional love can overcome all obstacles including PANDAS. He is alive and happy and successful in his own right. I want you to know this because no matter what you are up against, your unconditional love and persistence will find a way into this child and heal her. Keller started the Zithro on my daughter a month ago. No noticeable difference. I am now wondering is the doseage if enough or if we should switch to Augmentin. We did the steroid last week. Marked improvements in school for the last few days..ability to articulate math problems, write one sentence stories, for the first time ever. Yet it also brought with it episodic anger that has been easily manageable. What has not been manageable is the mega hyper activity level and invasive of others personal space. So much so the school ask me to keep her home due to excessive chattiness. My next step is to work with a homeopath (Keller has one) to do another remedy before I do IVIG. I also want to discuss whether the dosing and antibiotic are right before moving to IVIG. I commend you for pioneering forward with PEX. I know your situation and know you have been through a LOT. I pray for you and for your entire family. I think often you just need relief, you just need to cry or shout...feel free to call me if you want to talk or meet 425.301.9093 Having someone else who understands what you are goign through sometimes is just enough to make it through the days (and nights). if it's any consolation my dauhgter used to wake twice a night until she was four. Now we are down to one time at 4:30am. Yet since moving here...she dropped from 11 hours a night cummulative to 9!!! after antibiotic she was doign 10-11...then got H1N1 and went down to 9 again ever since. The blips I think will be there for a while........