Thinkandreceive

In a major flare right now. Aside from antibiotics, what helps the most with anger and aggression, and irritability!? I need something quick! Its getting out of hand here! TIA Bailey

Thank you for sharing! This stuff is very scary, but very reassuring that there is an answer. And answer to my sons ups and down, and to his chronic infections. How is your treatment going? Have you both seen positive outcomes? My husband will come around! We have made many strides so far, and many times it took lots of convincing and educating! Time for some more! Bailey

Thank you for sharing! This stuff is very scary, but very reassuring that there is an answer. And answer to my sons ups and down, and to his chronic infections. How is your treatment going? Have you both seen positive outcomes? My husband will come around! We have made many strides so far, and many times it took lots of convincing and educating! Time for some more! Bailey

Wow. How similar all these stories are. Thanks for sharing this video! I had actually seen it a few months back and felt sick while watching it. I had actually watched it during our ABX course Dr.K in Chicago ordered. I had a feeling there was more going on, which led me to Dr. Trifiletti who ordered the bloodwork including the WB. Although Dr T said the lyme was negative I reviewed it and of course Reactive. My son also lost speech after the MMR. He didn't have much before it, but completely stopped vocalizing. He also Memorizes EVERYTHING! He can remember a song after hearing it one time. He went from being non verbal last year and this year says anything, sings anything. Super smart, super bright, just very sick. He has been very sick for a long time. And the sad thing is, he can't tell me if his joints are hurting, if he is nauseous, ect. Who really knows the extent of his illness other then him. He never showed signs of SPD, or ADHD, Aggression ect. until the summer of 2010 after vaccines, and after chronic infections. I just kept getting "oh its a virus" from pediatricians, infectious disease Dr.s and so on. That is so reassuring to hear about your DD. I can't wait to share a similar story in the very near future!

Wow Susan, I can't believe how similar these stories are. I have had this gut feeling for some time, that Lyme could be an issue, even though I knew it wasn't from an actual tick, and no signs present, it was just a mother gut thing. We haven't used Igenex yet. I got these results from blood work that Dr.Trifletti took for my sons pandas symptoms. Of course, I have strep currently and my son even though he had strep titers 7 months ago has NO strep titers now. Everything else came back normal, and according to Dr.T so did his Lyme. However when I read over the lab work, I found the reactive band 23 IgM and the Reactive band 41 IgG. I know the Band 41 is common and not specific to Lyme but the band 23, and the fact that this was NOT igenex labs, Makes me even MORE worry some on what else its NOT picking up on. We are also testing for heavy metals in a few weeks through Chelation, and that is our next route...however I feel like I need to address this Lyme first. I know it is an issue, and without a doubt, and issue for all of us. Thanks for weighing in. Anymore insight would be greatly appreciated. Bailey Hello, your younger children sound very much like mine were. My children got lyme from me during childbirth or through breastmilk. I did not know I (we) had it until 2 years ago. They had issues from around 12 months old and we have had sensory processing dx, pandas, spectrum disorder, gluten intolerance. A LLMD will take the positive bands to heart and can give a clinical diagnosis if needed. My dd10 had negative tests at first and after 3 months of lyme treatment got a positive test. She had pain like your dd and sounds like her in all other ways you mention. My other dd had many conditions found with autism and sounds similar to your son. I believe there is a strong connection between autism and lyme. Both my children are doing very well now after almost 2 years of lyme treatment. My youngest dd9 especially is doing great after addressing her lyme and also methylation pathway issues. DD10 is currently struggling because she just had strep and the flu but hoping she will continue to improve back to how she was doing. I hope you do make an appt with an LLMD and that your dh will open to the possibility so you won't have any road blocks to finding out exactly what is going on. Searching for what was going on with my children helped diagnose myself. Was your WB through Igenex Lab? Susan

Hi all, We have had a long journey with my son since he was about 16 months old. At that time is when we started with chronic (i mean CHRONIC sinus infection) We have been through Autism Dx, Pandas DX, seen immunologist, neurologist, Dan dr.s, Ophthalmologist, ect. And Now a "negative" WB result. Well, more like Positive result. band 23 IGm and band 41 Igg. My son is now 3.5 years old. His longest and strongest dose of ABX was a few months ago a one month dose of Augmentin from Dr. K in Chicago. We saw huge improvements with his anxiety, and OCD behaviors, but we still have many road blocks. A few questions....Can Lyme disease in a young child mimic autism. Although my son doesn't have the Classic autism (he is very connected, social, ect.) He has a lot of rage,anxiety, sensory issues, especially sound and touch, irritability, aggression, and most of all chronic infections. How does a child so young get Lyme? Should my whole household be tested? My oldest DD (5.5 now) always cried/cries about leg pain, Even when she was a toddler I just never believed it was growing pains. She has many sensory issues, really bumpy skin, grinds teeth, super sensitive to noise, never slept well. Is this something they can get from me??? My middle DD (4.5) is quite neurotypical. I just started to question if maybe she was lucky that I had strep B when I was pregnant and the IV abx I got during labor helped her out in some way!? With one band Reactive and specific to Lyme, will a LLMD take one band seriously? I want to make an appt. but also don't want to go for nothing. Are there alternative Antibiotics other then Oral? The one month dose of Augmentin literally tore my sons insides apart, even while on strong probiotics for a long time prior to abx use. Anyone have alternatives? Or injectable abx? My husband is convinced Lyme is DEFINITELY NOT a factor, the CDC says NEGATIVE. I don't know what I can do , say, or show him to make him really trust what i'm saying. Any tips to make one believe or think outside the box would be great also. TIA

I meant for it to go to Autism/Aspergers (Did i put it there?!) He has been diagnosed with both. We have pretty much gotten the pandas out of the way...for now. But ASD issues are still very much there. Until we fight yeast, toxins, allergies, ect. I figured more people in the autism community deal with more bowel issues, then the straight up pandas mommies.

So, I know my son has yeast issues. Many years, and months on Antibiotics from pandas, craves sweets, juice is his #1 addiction. We eliminated most of his juice (which before was literally more then half a gallon a day. To about 16 oz. a day) We are on a week of this. Today he had the most AWFUL bowels i've ever seen. And trust me, i've seen it all. This was pure liquid, yellow gold, and smelled like sulfer. Does this fit the description of yeast die off at all? If not, any ideas? And what would yeast die off look like? We are hoping to start Grapefruit seed extract soon, now that he is off a med that is elevated by antifungals.

We are seeing a Pandas specialist. We have gone to see Dr.K in Chicago and a phone consult with Dr.T. We are still waiting for the lab results from Dr.Ts order. When he got his T&A removal in Decemeber he was covered for a week pre and a week post op with abx but it didn't help any. Or maybe it helped from the infections stand point but not so much for the oxide because he still had a major flare post op. But I think i mentioned his sisters had pos. Cultures a few days post op. I have wondered about the mthfr mutation. He gets mb12 injections. B12 has always been in my suspicions. Once lab work is back from Dr.T we will also be going to a new bio Dr. With lab work in hand.

I know it didn't start the process. He was showing signs well before this. But this set him back months. From losing speech, to anxiety, to rages.

HI all, Did anyone have an experience where a operation or surgery trigger symptoms or increased symptoms? When my son was 16 months (after vaccines) he started showing a few signs of autism. He became more anxious and toe walked. Then it was chronic sinus and ear infections. 5 months after that we got ear tubes put in. The following day he was EXTREMELY anxious....not just for a few days, weeks, but now onto a year later. He also lost speech following that. Became more aggressive, and more ocd. After strep way more ocd, anxious, ect. He has been diagnosed with both autism and pandas although probably losing the autism diagnosis soon because his speech has sky rocketed in the last year. Also doesn't have classic signs of autism, but during a flare you'd never know. He also go this T&A removed, and even though on Antibiotics still had a severe pandas flare post op. Of course his sisters had strep that week. I'm interested to hear if any others have experience anything similar to this. Also if any conclusions have been made about the procedure. What causes this? the nitric oxide? immune response? Thank in advance for any help.

HI all, Did anyone have an experience where a operation or surgery trigger symptoms or increased symptoms? When my son was 16 months he started showing a few signs of autism. He became more anxious and toe walked. Then it was chronic sinus and ear infections. 5 months after that we got ear tubes put in. The following day he was EXTREMELY anxious....not just for a few days, weeks, but now onto a year later. He also lost speech following that. Became more aggressive, and more ocd. HE has also been diagnosed with PANDAS. I am trying ot figure out if operations triggered autism and/or pandas symptoms. And what it may lead us to, with whats going on with his immune system, genetics. He also go this T&A removed, and even though on Antibiotics still had a severe pandas flare post op. Of course his sisters had strep that week. I'm interested to hear if any others have experience anything similar to this.

My 3 year old son has had a flesh colored little bump on his lip since he was about 15 months old. It is not very noticeable, but noticeable to me. To me it looks like a wart. I showed his pediatrician a year or so ago and they were less then worried. I wonder if it was caused by a vaccine that contained a virus. Particularly the Chicken Pox or MMR. I was just talking to a friend whos son is about a year younger then my son, and he has the exact same thing. I am more concerned about the idea of it harboring a virus since my son has PANS (PANDAS), but many viral symptoms. Anyone else have this come up, especially at this age, or after vaccines? Any insight on what it is, or how it can be treated would be greatly appreciated. Bailey

I have heard a few people today on other forums talking about high dose Vitamin A to help with Viral issues. Mostly from MMR vaccine. The MMR is what put my son over the edge. He has recovered a lto but now dealing with PANDAS, and still toe walking, and eyes crossing. He shows many signs of Viral issues, especially according to Danasview. Someone said today that while their kids were on the High Vitamin A protocol for 2 days, they saw no toe walking in their child. I am so curious on this. Anyone here try this or hear from others who have?

Ive read a lot lately about histamine brain levels. I would find a Dr. who runs IGG sub classes. they can tell about histamine levels form that but they need to know what to look for...This is a good article on the roles histamine levels can do... http://www.joanmathewslarson.com/HRC_2006/Depression_06/D_roller_coaster.htm

We see Dr.Amy Mckenzie in Clinton Township. She is super. I have also heard great things about Dr Keri Topouzian he travels through out but mostly in Grand Rapids and visits Rochester Hills and Bloomfield through out the month. Also, Dr.neuenschwander in ann arbor I have heard WONDERFUL things about also!

I've been dying to see this! It won't let me get to the video though it says it is private.

Sorry i'm new to this, what is DX? Can you confirm PANDAS if you are not experiencing the typical symptoms? For instance, if my son were to undergo a month of an-bio and helped his symptoms, and then went for a confirmation with a PANDAS DR. a month after that, could they detect it? I have had so many people talk me out of this months before saying he is a boy and its his age, but now I think they are realizing what I realized a while ago and talked myself out of. Mothers intuition is there for a reason i do believe. I know he isn't autistic although his behaviors resemble an autistic child. Everyone would tell me how he isn't autistic, which I KNEW but I also knew this was NOT my kid! I knew SOMETHING had happened to him! Thanks for sharing your story with me!

This is just all so interesting to me and opens my eyes to more and more clues that are there or I have missed along the way. I must say that when he was 9 months old was when he got his first infection, and i remember thinking how much had changed with just the one. Although it went away with antibiotics, they always came back more and more often and with more vengeance. Always hard to get rid of and always changed his behavior. I will keep updating on what we find out and what is going on. Thank you all for taking the time to help me get a better understanding of all this. My best wishes to you and your families who are struggling to keep your kids healthy, and happy!

Thanks so much! I was wondering if he maybe got PANDAS from the ear tube surgery, or if that increased it. I was reading how another child that his DAN! DR. treated had gotten PANDAS after a tonsillectomy. This week was a really tough week behavior wise. I don't know if it was because he started school (although only for 2 weeks) and maybe picked something up there, but also I just found out this morning that the antibiotics I had JUST started him on a week ago has 750 million strains of the strepp. in it. Which I don't now if that triggered anything but I only checked that because of a blog i read that said her daughter and other kids have been shown to react from antibiotics and some yogurts that have it in that. Also, I am holding off from vaccines for a while...he has not had that vaccine though but that is GREAT to know! I will steer clear of that until I have definite answers!

Thanks so much! I was wondering if he maybe got PANDAS from the ear tube surgery, or if that increased it. I was reading how another child that his DAN! DR. treated had gotten PANDAS after a tonsillectomy. This week was a really tough week behavior wise. I don't know if it was because he started school (although only for 2 weeks) and maybe picked something up there, but also I just found out this morning that the antibiotics I had JUST started him on a week ago has 750 million strains of the strepp. in it. Which I don't now if that triggered anything but I only checked that because of a blog i read that said her daughter and other kids have been shown to react from antibiotics and some yogurts that have it in that. Also, I am holding off from vaccines for a while...he has not had that vaccine though but that is GREAT to know! I will steer clear of that until I have definite answers!

Have you heard of dr. Chugani at children's hospital? Was Going to try and book an appt. Was wondering if you've heard anything about him. I read about him on another message board but no one really mentioned if how good he was, although he is the chief so I'm assuming/hoping he knows his stuff. Although you never know anymore.

Our DAN dr did order test. We will find out results in a few weeks. Also he is taking probiotics, omegas, and gab a which all have seemed to help a lot! Looking forward to more progress!

Thanks so much for your response. I just googled dr. Shoemaker and will read what he has to say. This is all so new to me and boggles my mind what can happen to healthy happy kids with just one infection. How is your son now? How did you find out he had Lymes also? That had never crossed my mind nor would have if i hadn't seen it related with the PANDAS just today. Thanks again for your feedback!

This is our story and it began fall of 2010. My healthy baby boy who was a happy go lucky kid became sick with a thick green runny nose. Although he had suffered from ear infections quite frequently prior to this he never had any health issues. Unfortunately he was on anti biotics for this runny nose and it didn't help. So, a month later he went on more anti biotics, and it STILL didn't help. Meanwhile he became more and more aggressive, and very hard to please. He would search for butter knives in the silverware drawer and would carry it around all day. He would wake the next morning and look for the RIGHT knife again. Eating yogurt he would switch hands repeatedly as if he had a system. He became more and more tactile defensive. He was then put on more anti biotics for the runny nose, and then topped with another ear infection. Frustrated with this infection and it not going away he was on MORE antibiotics and then we decided to get tubes placed. Bad idea. The tubes were placed in the beginning of january. So, this runny nose had been going on for 4 months at this point. After the tubes were placed his anxiety increased DRAMATICALLY. He now to this day cries when our dogs bark and is afraid of people he used to love. After the tubes were placed the runny nose stuck around. I had a culture done (although I don't know why this wasn't don't MONTHS ago) and it came back as streptococcus phneomnia (sp). I do know that it is resistant to everything except penicillin although he was on azithromycin but was a 5 day treatment. I am suspecting he has had the strep. Infection though from the get go, and has had it for what would now be about 10 months. In the last 10 months his behavior has gotten so out of hand. He run by people and hits them, he jumps off of high places in the house, he crashes into things, he just has no impulse control. I know he is a boy, but this is far beyond that. I also noticed lately if someone is around that he is not sure of (even though those people are people we may see everyday) he will swing his head from side to side, as if he doesn't know where to look, but doesn't want to look at them...make sense? I need to video tape it. I have seen his behavior go up and down and up a down. Also, he is still young, and also a late talker, so it's not like I can get info out of him other then the physical evidence. Ex. Bowels nose, behavior. We have had our first visit with a DAN doctor that we love but at the time of the visit I had no idea about PANDAS. I will definitely be bringing this up in 2 weeks. He is currently on a GFCFSF diet and we have seen huge improvements with his speech, and bowels, but not so much the ocd, and sensory behaviors. I would love some feedback and thoughts. Also if anyone knows any really good dr.s that are on the insurance plan and actually take pandas into consideration, in the michigan area I would be more then grateful for the information you can share. Also, I know the age range for pandas is technically 3 yrs + but could it be possible for a toddler? I only started reading about pandas a few days ago after reading book about healing and preventing autism, and of course this was one of the last chapters! I am glad I kept reading anyway, whether it is the case for my son or not. I hope one day maybe I can lead someone in the right direction, and rule in or out for my son.