smartyjones

Also ( wish I could find it) it used to be accepted pre “modern medicine” that neurological problems followed an illness. there is a great story in one of Dr. Andrew Weil's books - i read it some time ago so don't at all have the facts correct, but the gist. Long ago, in some town in Europe (very possible elsewhere) many people in a village in a valley would display odd behaviors. There was a monastery nearby on a hill. The people would be sent to the monastary where they would usually be "cured" thought to be religiously connected. Somehow - it is now believed that that valley harbors molds and when those people were away from the mold, they would lose their odd neuroses.

my son has had high titers and taken a long time to fall. in dec, ped did a culture after titers and was +. he had no typical physical signs of strep. previous strep infection was 2.5 years prior and only symptom was vomiting. the last time we had it drawn was june and were still high. he presented with classic behavioral symptoms - intense separation anxiety, strepnoxiousness, clingyness, inappropriate fight or flight, wide pupils - but not any obvious tics. until recently, i said he had no tics but with more understanding of tics, i saw eye blinking once for 5 seconds and he would very occasionally touch each finger to his thumb. i also wonder if high titers = different presentation than not high. i am curious if in those that do have high titers if that can be useful.

She kept saying "listen, listen" but couldn't express what was driving her extreme behavior glad to hear your daughter is doing well! Is there a name for that? My son does something very similar but he yells and whines "I'm trying to tell you something" while he may be sitting in my lap with my full attention trying to help him sort it out.

i see in my brookstone catalog that they have a toothbrush sanitizer - it uses uv germicidal light to disinfect. they range from $30-50. Does anyone know anything about that? would the hydrogen pyroxide work just as well? i used to have my boys use electric b/c they don't brush as well themselves. i stopped b/c they're more expensive to throw out all the time.

does anyone know if there is/what is the difference in the common pneumonia bacteria - strep pneumonia - and group A strep? does it matter? two of my sons friends (one school/one other) have had pneumonia in the past 2 weeks - one now hospitalized. i think i'm further losing my mind due to watching him like a hawk. today he pulled the covers over his head in the morning - i felt my stomach sink remembering pandas mornings last year - then he pulled them off and laughed and jumped out of bed happily. thanks.

Suzan - great website - Thanks!

"Life isn't about waiting for the storm to pass. It's about learning to dance in the rain." A friend sent this to me about a month ago - it just made me cry - I don't want to dance in the rain! But it is raining so we all best dance together! When my first son was 12 days overdue (and 9lbs 9 oz - thank you very much!), I had acunpuncture to induce labor. The acupuncturist was a very wise woman who had previously been a midwife. I don't think I'll ever forget when she told me, "you have the strength with you of all the woman who have gone before you in this". You really do have all the strength of all the parents who have gone before and are here now with you! ~Kathy

I am thankful for this forum- as no one else in my life is as interested in talking about this as incessantly as I am You are all a great comfort and companion to me! oh dcmom - so right with you. Last week, my husband suggested i change my name to obsessedmom - i was like - that wouldn't differentiate - we're all obsessed! i wasn't upset - yesterday, my fil who worked in hospitals in the military said he didn't think danny really looked any worse for wear from anything and he'd probably outgrow it all. they just can't understand!

would love to know the original source for that!

Are any of your DAN appts covered by insurance?

this is a weird one, he doens't seem to like the sound of ME, my singing, my saying cutesy remarks, even a word he never heard before. he gets irritated and shows it! he basically has a mini meltdown over it, not joking, sometimes I do it on purpose to get a rise out of him and he comes at me, but we are both laughing Faith - hilarious! I'm so glad you've found the humor in it. Meg's mom - thanks for all your info - it is a great help - only, I'm sure I'll have more ?s for you. You have truly done some difficult work - here's to you! ~Kathy

I know I keep asking the same question over - but I am still trying to get a handle on OCD. Can you explain what you mean that the sensory issues were really OCD? My son had extreme sensitivity to sounds during exacerbation. He's always been sound-sensitive - balloons popping, blender, mixer, coffee grinder. He doesn't really seem to have that now - which adds to my curiosity about just how long has he had pandas symptoms that may have been mild or if it's a growing out of it thing. Thanks, Kathy

oh yeah - totally - the $. I was upset when the gardisil came out and it was the manufacturer that was lobbying Congress to make it mandatory. Regardless of any reality of the benefits/risks - the manufacturer who stands to make $ should never be involved in public health decisions! I would feel much better about H1N1 vaccine if it didn't have that $ component. I do like our capitalistic society but it does muddy waters with public health. Not sure how old everyone is - do you remember the Friends episode when Phoebe tried to find a fully altruistic act? She couldn't do it in just everyday life so it's even harder if you include govt and $.

I took this directly from the CDC website - On June 11, 2009, the World Health Organization (WHO) signaled that a global pandemic of novel influenza A (H1N1) was underway by raising the worldwide pandemic alert level to Phase 6. This action was a reflection of the spread of the new H1N1 virus, not the severity of illness caused by the virus. I tend to be one to search for homeopathic remedies even before PANDAS. My parents are medical and I've gotten their skepticsm that medicine is really just a lot of educated people doing the best they can with their science and their opinions - but I don't have their medical education (a dangerous combination). My kids have been fully vaccinated - I now regret we used the APA schedule - in hindsight I would have done something like the Dr. Bock schedule. My kids did not go to daycare as infants/toddlers - they could have gotten some vaccs later. I don't feel there are no risks for the vaccine, esp with a kid who's immune system is screwy. But would they be better off with it b/c their immune system is screwy? It's a tough question and no one seems to have a good answer. I have yet to be able to find a good, non-death hyped recommendation to vaccinate for H1N1. Is it really to prevent serious complications, is it for society as a whole as herd immunization theory, is it to curb the loss of work, school, quality of life? ~Kathy

I am usually on the PANDAS post but saw your question on the main page. My son is having CST. He's 5 and started with PANDAS symptoms a year ago. Our dr said he thought it would take 4-6 times to see if it was having a benefit. He is also doing a homeopathic protocol from the same practioner. I'm not sure what result he is getting from the CST. We are paying out of pocket so I am not having him go as often as I'd like. The dr. said he'd have him go every week - we're only doing about once/month. After the treatments, he does seem to have a greater sense of calm and peace. The last one was his 3rd - that night, he was off the wall - loud and throwing things out of the bath. It was short-lived and the next day, he seemed peaceful. In general, my son is doing well. I think it's more the homeopathic protocol than the CST. I would definitely recommend it.

For those of you who have run the immunology testing - why did you initially do that? Was it to get IVIG paid by insurance? I recall reading someone's immuno said pandas is really a symptom of an immune problem, not a condition of itself. Is that what you now believe having run those panels? do you think the issue is the immune system doesn't produce the proper antibodies or that the antibodies don't work correctly? did anyone run the panels and come back normal? thanks!

My dr. was at a loss and had said I could try eliminating dairy or wheat (whichever one first) to see if that was it but really that to me is a wild goose chase Last fall, when then 4-yr old started with pandas behaviors, some friends had suggested yeast infection and others suggested eliminating dairy and gluten. At the time, that was a lot of what he ate. I wasn't sure about it and couldn't see such restrictions if that was not correct. He was also about 30 lbs - around 5-10 percentile. He's little in nature - little wrists, delicate face - but was starting to look scrawny. Around same time ped was testing strep, we also went to a naturopathic dr. She ran a blood igg test for food allergies. He came back off the chart for all dairy, eggs and most grains. Naturopath was quite shocked to see it and she runs that test often. Seeing the chart gave me something concrete to change his diet that I never could have done previously. Two traditional allergists that we've consulted do not believe in that test. They agree his body produces an antibody to those foods but don't believe it matters b/c we don't see any manifestation of rash etc. They say if you randomly test anyone, they will also show as producing antibodies to various foods. They only care about an ige food reaction - rash, anapyhlax, etc. I disagree. I think common sense tells me that he shouldn't produce any antibody to the food that he eats. Also, there is a school of thought that asks if an inappropriate engagement of the immune system spells trouble for the body in general. It makes sense to me that it's at least a possiblity. JHU dr says that is a school of thought, but no science to back it up. But who can answer why kids get diabetes or other conditions? After that visit in the naturopath's office - Feb 3 (day after older bros birthday)- we took him off all dairy, eggs and gluten. He is unbelievably amazing about it (maybe good effects of OCD ? ). He doesn't eat anything he's not supposed to and asks if something is okay. It felt impossible at the time b/c everything most people are used to eating has those ingredients. Both boys ate a ridiculous amount of Rice Chex the first few weeks. I kept a close check on his weight and he actually gained something like 4 lbs in the first 6 weeks. We bake rice flour muffins, cookies and pancakes. Dinner is easy - with rice, potatoes or rice pasta. Although older son hates no bread at dinner. We bring him special food to birthday parties or going out and there are a number of places we can go out. Most restaurants are aware of gluten and dairy allergies and can do plain chicken. He was in heaven last month - Uno has a gluten-free pizza crust and he had sauce and chicken pizza. My dad took them to McDonalds last week (which I hate anyway) but he brought his own sausage and french fries and was happy to get an apple juice and toy. It certainly is not ideal, but it is much easier than I ever dreamed back in the beginning of Feb. If your kid likes veggies and fruit, it would be easier also. That said - I don't know what effect the food changes have had. Unfortunately, we changed the food and tried Keflex for a month at the same time. He was 100% back to normal - I think due to keflex. The naturopath thought he may be celiac and that was the root of all problems and if he wasn't celiac those food reactions were the root of all. Our ped wasn't helpful so I didn't get the celiac test b/f stopping gluten. I think strep is the root of all the problems. I think it is in his gut and that's why he has trouble with those foods. He did gain weight with the changes. He also had a pandas relapse in the spring with a cold (3 weeks off abx after 35 days on) while still eliminating those foods - 10 weeks into food changes. We now see a different naturopath and the homeopathic protocol we are using suggests gut mucosa plays a major part in healing other immune issues and suggests no dairy and hen's eggs. I've kept him on his diet b/c he's mentally okay with it and I just don't know what role it plays. I'd say he's now about 90% pre-pandas. I never would have been able to eliminate those foods if I didn't see the chart of totally over the top results (again - not something most traditional drs agree with). I would like him to be able to be more free to eat but think it's okay for now. If I had to pick for someone to try, I think I'd suggest eliminating milk products b/c I think dairy is more tied to immune issues for non-celiac people. We went cold-turkey and I think it was easier than trying slowly but that may just be latent OCD all or nothing in me! Again, I don't see concrete effects from him not eating those foods, I do it b/c I think it overloads his immune system and I don't want to do that. When I see him at 100% for a while, I believe we'll test again or introduce those foods and see what happens.

then I took her to the dr. and he told me in kids strep can present in so many ways including tummyaches, vomiting and rashes I definitely think vomiting and rashes are related to strep! In 2006, my then 4-yr-old non-pandas woke up Easter Monday with whitehead pimples on his cheeks and chin that looked like teenage acne. They went down during the day but not fully away. The next day, they were there raised again when he woke up. When we went to the dr around noon, they were again down. She said she didn't think it was strep but would test. He was + on the rapid. No other symptoms - he didn't seem sick at all. Dr.s office had said they wouldn't test 22 mth old (now pandas) b/c it's so rare for under 2s to get strep but to call with any thing off with him. The next day, he threw up just after getting up. He was + on rapid. He also had no other symptoms - I now wonder if he ever got rid of that strep. I also wonder if that was some different strain of strep. Pandas-son used to throw up at the drop of a hat. I used to think it was just how his body dealt with whatever it was facing. I now think it was strep rearing and then subsiding. He has also had times of very bad smelling urine. When pandas behaviors began last fall/winter, he had a terrible mouth rash. He was sucking on shirts at that time & drs would say it was chapped, but I know it's not just chapped - it's somehow some other manifestation of strep or possibly herpes. He was showing pandas behavior at home in Oct but not so much at school, until he had an potty accident when there was a stomach thing going around school. He also had a terrible stomach flu around Thanksgiving. In Dec, he had ASO of 898 and + throat culture. I do think he's got strep in his gut.

In that other interview of Beth Maloney she said something like "the research is so new". It got me thinking - do the dr's who are involved in research/treating hypothesize that PANDAS is a new diagnosis and newly discovered link for strep to the behaviors - kids have always been affected just treated as OCD, tics, etc. - or do they believe it to be a new illness from a mutated strain of strep or new immune system malfunction? I guess it doesn't matter in treatment but it just got me wondering on a broader infectious disease front. Does anyone know?

Thanks for sharing that! I love the announcers, "due to Beth's unwillingness to accept the doctor's prognosis" and when talking with her "you refused to accept the diagnosis of OCD". Here's to us all on that!! Shae's mom - what do you mean - you find what scary?

I asked her what had and changed and she still told me that she didn't have enough time BUT she also finally told me she was afraid of choking if she ate to fast. Classic Pandas symptom but it took her months to tell me the underlying reason as to why she refused to eat at school. I know I'm not really helping any but just thought I'd share that despite consistently being told by her that it was a time issue it was really an issue of a fear of choking. My son refused to go to school the last 5 weeks last year. There was an incident that he got in trouble. The teacher could have over-reacted a little; I had warned her I was seeing a ramp-up in symptoms so I still feel bad I put her on hyper-alert. At any rate, he got in trouble and I think due to pandas exacerbation, it took on a life of it's own. He would just say he "was scared of everything" or didn't like it or the work was too hard. He really loves school. (Interestingly, I don't really think it was the fact that he got in trouble that caused the school phobia. He was getting a cold and symptoms so I kept him out the next day. The third day, he had bloodwork and couldn't eat breakfast - it was late and he only goes 1/2 day, so I kept him out. The next two days, another local school was closed due to H1N1 and I kept him out b/c there are siblings at our school and that school and I was paranoid and unsure what the bloodwork would show. I don't think it was the trouble at school as much as not returning after getting in trouble. In his chain of thoughts, not going = he's too troublesome to be there or something) During the summer, just by chance, we had gotten a book called Brave Ben by Mathilde Stein from the library. Very cute book about a boy who is afraid of everything and calls the "Magic Tree" for help. Danny is 5 but my 7 year old liked it too. Closer to school approaching, we wrote a story almost page for page about Brave Dan who really does want to go to school but needs help b/c he's afraid. We wrote the line, "Sometimes he would feel very scared to go to school. His mama didn't know why, his papa didn't know why, even his teacher didn't know why." I was going to write, "Even Dan didn't know why" b/c I believed he didn't know why, that it was just a visceral reaction. Danny quietly whispered, "I do know why." He then told me that he was scared he would always be in trouble b/c of that incident. He's such a black & white thinker that for him, that incident = he's always that kid in trouble from that day. We wrote out the story and it was helpful to get him back into school. He loved it but was careful to make sure it was a story about another Brave Dan - not him. He wanted all the pictures cartoons so there was enough distance. The first couple days of school we talked about the things book Brave Dan encounters as we were walking into the school. I think it was helpful for him to have something else to focus on and be able to put it outside of himself. I think maybe the most helpful thing was for me to get a handle on the real issue. He is doing well now and I think his biggest pandas symptom is inappropriate fright or flight. He doesn't so much have a problem articulating what's wrong - it's more separating his intense emotion from it to be able to state it and look for a solution. For the school phobia, putting it in the form of a book and having the distance from him to the character of the book helped. And I gained some insight into the root cause. The bee fear is certainly valid. When another kid got stung, a teacher or kid could have said the bees are attracted to the food. If he's a black & white thinker, he may believe one bee attracted to food = any food will always bring on bees; someone once got stung = someone will always get stung if bees are around. I certainly would try to work with the school to make sure they are appropriately dealing with the bee issue. Also, I'd try to work with him to conquer his thoughts about it.

Her brother had strep two weeks ago and she was fine when she was not around him but anytime she was near him-within 15 minutes she would start having anger issues that would last the rest of the day. I'm not kidding--she spent the entire day with me and was happy, laughing, having a great time and then brother came home around 5 pm and she went down the tube immediately. Shae'smom - so interesting! Would she mellow out when not around him after exacerbating with him? How many days did you observe this?

I have a story to relate but please excuse that I heard it a while ago and won't get it right but can convey the jist. My ped told me this in the spring - he told it as an example that he didn't think my 5 year old had strep lurking in his body b/c we'd treated strongly with abx and he hasn't had invasive treatments to breed strep - but the story is quite interesting. He saw a college age girl (I don't think she had previously been his patient) that had previously been beautiful, motivated, healthy. She'd started having trouble in school, academically, socially, feeling badly, losing motivation, looking bad. She eventually dropped out of college. Her parents were wealthy and had taken her to many doctors who couldn't figure out what was wrong. When he saw her, he ran strep titers. They were high. From there, they figured out that when she had previously had some dental work, some thing had been done incompletely or improperly and she had a strep infection in her gums. They corrected the dental issue, treated the strep and she was back to her previous self. Not sure if that helps you but I think it's an interesting story.

His symptoms went on all summer and things just kept getting worse during the steroids and the rage was horrible. Two holes in the wall, broken picture frames, threatening and spitting and kicking and hitting. We have been seeing several behaviorist to get him straightened around. I think we must have given into his tantrums a couple times because now he must test to see if he can get his way! Everything has become a fight. I've found the book The Explosive Child by Ross - or Russ - Greene very helpful. It leapt out at me one day when we were at the library and I was thinking, 'there's got to be a better way' after we'd had a horrible tantrum the day before. We were leaving my mom's and my son was opening the car door as I was driving. I stopped the car, pulled him out and sat with my arms and legs around him until he calmed down - all with a postman watching wondering if he should call 911. I don't really refer to Danny's tantrums as rages b/c he's not really angry - just extremely upset. The book gave me some good practical advice on what to do and say and it works for us. Previously, I was getting dragged into it with him and I'd feel myself wound up too. Sometimes, sending him to his room and holding the door until he could calm down. I didn't like this and it didn't work - I didn't know what else to do. I knew it would be better if I didn't engage with him, I just didn't know how. Currently, he will still freak out about things. We just have a better way of interacting with him rather than feeling like the only choices are to let him have his way or stand our ground strongly.

I am so so happy Sammy was on the Today Show. I think they've done us all a great service. I know many of you are concerned the dr mirrored what we've experienced from the medical field. I think what came across for the general public is absolute shock at seeing the videos of Sammy and then seeing that fabulously healthy, smart, cute boy talking so intelligently - I cried the whole time. I think the take-away message was a strong - "I can't believe what that kid and his family experienced from a strep infection." I think the general public - including me one year ago - a -- thinks strep is harmful, you need antibiotics, but they have no idea why b -- thinks RF is some strange illness of long ago but don't even realize it's related to strep c -- have never heard of SC. I am really celebrating that piece. I've sent it to family, friends and my son's school and have gotten such support b/c it's given concreteness to what I've been trying to explain to them. ~Kathy