Darla

Came across some positve info on a new vaccine still in clincal trials, but i wondered if anyone here has anymore info on it? It's called StreptAvax and is in phase II of thier trials. It looks promising.

update: Got the results back from the QEEG testing which is done before the neurofeedback therapy. It said that my eight year old son has some learning difficulties, along with low level ADD. He's had two treatments so far, and will continue with two a week until we get in at least 25 sesssions. Every five sessions they check the data. It's very interesting stuff, and I am very hopeful this will work. His anxiety is a result of his struggle to constantly assess and figure out his confused view of the world. I was told he sees through a foggy window and part of his explosive behavior is due to expressive language deficiencies(learning disablility) and his impulsive oppositional behavior/attitude are from the ADD. We got a detailed folder full of the data which they explained to us over a two hour period. This past year my son matthew has been struggling with anxiety, explosive outbursts, ocd, and what I see as some depression. I have tried eliminating things from his diet (colors, dyes etc) adding extra certain types of vitamins ( inositol was really helpful for the ocd) but over all I didn't see any major improvment. This neurofeedback is a perminant solution - if it works and for most of what I've read it does, he will never have to go back. For people out there who have kids with these issues, that are all neurologically based, you should look into this. I will keep everyone posted as time goes on. I have read that a lot of people who use neurofeedback therapy can greatly reduce or stop their medication all together. I see this as a solution instead of a bandaid. We also have a developmental pediatric appoinment tomorrow, and I am looking forward to what the consensious is there. So we will have a second opinion, being from the more main stream way of doing things. I am hopeful.

sorry to hear how you are feeling. my son suffers from anxiety and negativity. we are a work in progress. just met with a neurofeedback doctor today who assessed him. not sure if you have heard of it. it's a non invasive- no meds type of treatment that changes brain waves to a normal level (if it works) we are willing to try, he is only eight and our insurance acutally covers the treatments although not the initial brain mapping which reads whats going on in your brain and what is not working correctly or working too much etc.. you should check it out and see if its a good fit for you. i would try anything rather than keep living the way it is. good luck

to read more please go to http://www.chron.com/disp/story.mpl/nation/6345245.html

HI Tracey, I just posted about a recent appt I went to about neurofeedback for my eight year old son. It's non invasive and very easy for kids to take part in. To my suprise just today I found out that my insurance is going to cover the treatments. First they do a clinical assessment with just you or you and your child. Then they do a brain mapping. They send it away to be evaluated and when it comes back they match it up with their assessment. If it matches then they decide on how much treatment you need. My son will need about twenty sessions. They go twice a week, sit in a chair and do their home work. THey have three electrodes that measure outgoing brain acitivity on a computer and use an auditory response system to beep and train the brain when it produces changes in the brain waves that are positive until it gets to where normal brain waves are created. You should check it out. THey use it for epilepsy, ADHD, Anxiety, migranes, insomnia. They can acutally see if you son has ADD. I Find that more comforting than a person giving me their opinion and then prescribing a life long med. This is perminant and I am told that every five sessions they check the status and should be able to see an improvement on the brain waves to see if it's working. I don't know, I think it's worth it for me. I am really not comfortable putting my eight year old on meds. I also heard that these meds are not FDA approved for children. They are adult drugs that have not been tested on pediatric levels. Also, kids on meds for ADD etc.. once they have grown older their brains end up being smaller than those of who did not take medication. I know some kids need it and I am in no way judging, I just want to try everything before I get to that. Everything. good luck ps heres a good artcile to get started http://www.qeeg.com/adhd.html

I just found out that suprisingly, my insurance is going to cover my sons neurofeedback treatment. It is expensive and a little bit outside of mainstream medicine, I have high hopes. The initial brain mapping is not covered. It's $750.00 The neurofeedback treatments, which it was reccomended that he do twenty, are $140 each at twice a week. So this is GREAT news that at least the treatments are covered. They will be able to do a brain map of my son and acutally see with real evidence weather or not he has ADD. MY friends neighbor had her son who is eight diagnosed with ADD by her pedi and given a prescription. She was not really open to that idea and took her son to a neurofeedback clinic. They told her that her son did not have any form of ADD. I just found out there are six different kinds. I am willing to do this, if it does work, my son will get relief from anxiety and ocd and add if he has it. Has anyone used Neurofeedback here?

I feel bad for these kids. It's not fun for them either. You should definately, pick up the book at your library (thats where I got mine) and read it. It sounds like andrew or maybe all (the apple doesn't fall too far from the tree sometimes of your kids could benifit from this type of model, I bet you will relate and feel like this might make more sense to you. It's not a quick over night thing but it makes a lot of sense. I wonder have you ever asked the doctor about cognitive skills or lack there of and how they relate to problem solving etc? Have THEY ever thought to address that aspect? I hope so. I'm in the process of trying to find a family/ behavioral therapist who has been trained in the CPS model. It is complex but not impossible, I reallyyyy suggest you read it for your sons sake. It could help tremendously. It's called The Explosive Child by Ross W. Greene. In case you need it again. Oh did I mention you should read it? I wonder if with your daughter it's more hormonal things going on, with changes in her body etc? I don't have girls but I hear they can be pretty emotional...like crazy!- going through the teenage years, I know I was! LOL I know around that age they struggle between wanting to be a kid still but heading into young adulthood and it can be tough to adapt. ughh I will keep you posted. Hang in there. I tend to feel the main issue for my son is anxiety. He has some ocd once in a while, but I've been giving him a Vit B complex and inositol and that has helped. I haven't done anything with the anxiety part yet. I'm still very much working on this for him, but I will keep on going until I can give him some relief, hopefully without meds!

My son starts to do well with the reward system but the major behavioral problems (exploding when frustrated) does not seem to be motivated by rewards. When I remind him in the moment it almost seems to irritate him more, he'll say I don't care! - he cannot think clearly at this point. This method is CPS model. Collaborative Problem Solving. Here is a pasted paragraph from the first website I listed below: ----------------------- What is Collaborative Problem Solving? The Collaborative Problem Solving (CPS) approach was first described in Dr. Greene’s book, The Explosive Child. The model sets forth two major tenets: first, that social, emotional, and behavioral challenges in kids are best understood as the byproduct of lagging cognitive skills (rather than, for example, as attention-seeking, manipulative, limit-testing, or a sign of poor motivation); and second, that these challenges are best addressed by resolving the problems that are setting the stage for challenging behavior in a collaborative manner (rather than through reward and punishment programs and intensive imposition of adult will). Challenging kids let us know they’re struggling in some fairly common ways (screaming, swearing, defying, hitting, spitting, throwing things, breaking things, crying, withdrawing, and so forth). But if you want to understand why a kid is exhibiting challenging behavior, you’ll need to identify the specific skills he’s lacking. And if you want to start reducing challenging behavior, you’ll need to identify the specific unsolved problems that are precipitating his challenging episodes. The Assessment of Lagging Skills and Unsolved Problems can be very helpful along these lines. --------------------------------------- That's just two paragraphs. You should check out the sites, they have some helpful info. I think there is no one size fits all to parenting kids. For some the reward system works, others it doesn't. I think with my child, it depends on the circumstances.. for some issues I can use consequences and it works but for the major explosions.. it's the CPS model I will be trying. There is a check list on http://www.thinkkids.org/core/pathways.aspx that you can go through to see which skills your child might be lacking in. I am willing to try anything, i'll keep posting updates after I get the hang of it. It's really hard acutally b/c your used to using the model of parenting most use with inflicting their will on the child- being authoriative. Also on that website there are two interviews that you can listen to for free with the therapists who talks about the concept it's worthwhile to listen to it. The link for that is http://www.thinkkids.org/system/next.aspx. Good luck. http://www.ccps.info/index.html thinkkids.org

My son has tics that come and go.. i say they are more like complusions. He feels the need to do the movements. So not tourettic per say but more ocd and anxiety related, it seems. BUT my son does the same thing with going to urinate when hes just finished brushing etc.. he gets in bed, gets tucked in, and immediately says, I have to go to the bathroom! He hops out of bed and runs to go. It's not a whole heck of a lot and it was worse a few months back. The severity seems to wax and wane. We did suspect PANDAS a few months ago after a bad strep infection and thought that symptom was due to that. I do not feel he has PANDAS at this point. I feel that the root of the behaviors are anxiety based. That's us though. Not sure if this is helpful.

I came across a GREAT book on help with challenging kids. It talks about children who struggle with flexalbility and low frustration tolerance and how to deal with them. It's not the normal model of parenting with rewards or consequences.. these don't work with these kids. There is a reason. It's a developmental disability that can be common for chilren with adhd etc. It's about kids who lack the skills to do well. It's so far has reported really good results for a lot of people. It takes a bit to get it, but I am willing to try anything. It's called The Explosive Child by Ross W. Greene, PHD. Curious about anyone having used this, please let me know how it has worked.

I came across a GREAT book on help with challenging kids. It talks about children who struggle with flexalbility and low frustration tolerance and how to deal with them. It's not the normal model of parenting with rewards or consequences.. these don't work with these kids. There is a reason. It's a developmental disability that can be common for chilren with adhd etc. It's about kids who lack the skills to do well. It's so far has really go results for a lot of people. It takes a bit to get it, but I am willing to try anything. It's called The Explosive Child by Ross W. Greene, PHD. Curious about anyone having used this, please let me know how it has worked.

Interesting point on the Q & A about some antibiotics having glutamate modulating effects resulting in behavior modification and as a result parents thinking that their child did in fact have PANDAS. Anyone know which antibiotics? I thought she eluded to Amoxicillan.

Not sure if anyone here has heard of or used Reishi. Here's an article, its good for many things it appears. http://www.naturalnews.com/021498.html

Looking for a natural suppliment that is a beta blocker. If so , what brand, amount? Also thoughts on results. Thanks. The reason I ask is because while researching ocd, using beta blockers reduces adrenaline which has been useful in helping patients.

Thank you, I appreciate your thoughts. It may have been someone else on the pill form, we haven't tried that yet....just the liquid. Could have been regular old yeast w/o the biofilm-sure. I don't know about the dye, no experience with that. But, if you had the same experience w/ the plain white pill...I was trying to figure out why zith, in particular, and not other antibiotics could cause this reaction. Or was that somebody else- I think I'm too tired to post.

I acutally saw that link, I went through earlier today, I may have missed this part, but am I correct in thinking that if it did have a biofilm I would be dealing with multiple (chronic) strep infections? If the reaction wasn't due to biofilm, could it have been caused by a regular old yeast problem? Or maybe he just reacted to the red dye? Hes eaten other things with red coloring in it and doesn't seem to have a severe reaction. Because biofilms have a protective coating, the microrganisms w/in them are not subject to detection-only the bacteria/yeast outside of the outer sheild can be detected (including by the immune system). I believe most biofilms are multi-microbial, including bacteria, yeast and fungi. Let me see if I can find the thread where this was discussed, and I'll link it. Here it is: http://www.latitudes.org/forums/index.php?...&hl=biofilm

if the strep has formed biofilm complexes wouldn't we still be dealing with a strep infection? And if so,if there is yeast within it,is that for everyone or just people who have an over growth of yeast? Meaning should I check him out for yeast? he did have strep I believe in the sinus's, the rapid was neg but the 24hr was positive and he had bloodshot eyes with green gook in the corners complaining of ear pain. thanks, for your input!

The neuro just left a message that his titers were elevated 1600. He had a strep infection confirmed 12-30-08. So they are still elevated two weeks later which is expected. I will have him tested in another couple of months so that I can get a baseline for further evaluation when I see an exaserbation of symptoms and can check for strep. I'm just debating weather or not to start antibiotics or wait and see if he has strong symptoms the next time he gets sick. He has had tics come and go for a few years and recently ocd came into the pic ... although as I've said before I feel the tics are more ocd than tourettic. The only abrupt onset of anything I saw was his behavior. He had two nights of a raging temper that was way more than his usual yelling at us etc.. I am not sure if this can be explained away by the fact that he may have had a reaction to the azyth (red dye etc). I do know that behavior was definately a result of either the azyth or the strep for sure. Should I start anitbiotics and see if ocd, tics improve?? Is that what is expected to happen when you issue the anti? And if so will I see it right away? What would be the shortest time frame that I might be able to see improvement? OR should I wait until another time when he get sick again and really watch it all? This was the first time I've known to look and it was sort of after the fact.. so I just don't know.

Hi greeneyes, I acutally had an appointment today with my son's pediatrician and we talked about the Bactrim. He didn't really think it was a good option for PANDAS as was going to talk to the neuro as to why she suggested it last week when I visited with her. I am holding off on it as of right now. I am curious as to what your dr. says. hmmm thanks!!

Could you tell me what kind of multi daily shake it is? And do you add the mthionine to it? I think my son would go for that. thanks, darla what do you mean by the "P-5-P" form of vit b6? and what dose is he on? Is it done by mg/kg bodyweight?

So the neuro we saw last week confirmed sypmtoms of pandas, I asked if there was any testing we could run to see what was going on in my son's body. She wasn't helpful, said she could run a metobolic test.. but basically sort of blew me off about it and said how he wouldn't like getting his blood drawn etc. So I have a follow up pedi appt tomorrow, called to make sure the results were faxed to him. The neuro never called me back after requesting a call back. Anyways, the receiptionist babbled about one lab test called ESR, which when I look up seems very insignifigant. I'm about to be angry I think because it just shows if there is inflammation not where it is or anything else. It seems pretty non-specific. Is this true? How do I get these people to help me get some testing done. I would like to test his immune system, allergies, and seritonin/dopamine levels? Who can do that? A DAN doctor?? I would assume this basic test would show inflammation anyways. right?

Bit of a technical question, can't seem to find answer for, maybe there isn't one as of yet. My question is in PANDAS the immune system sends off the cross-reactive antibodies and are thought to recognize epitopes on basal ganglia neurons. The resulting inflammation disrupts basal ganglia function that lasts for weeks with all the symptoms following. My question is do we know what specific epitopes are being recognized by these “antineuronal” antibodies? OR If the antibodies are interacting with a specific receptor or a single neuronal cell-type? I know this is heavy stuff, i've been trying to understand it all day today. I came across a drug that reduces inflamation in the hippocampal called minozac, a totally different part of the brain. Is there a drug that can do the same for the basil ganglia? OR suppliments? I read about vitamin D decreasing inflammatory cytokines in the brain, and also how it stimulates the neurotrophin release which induces the survival of the nerve cells. any thoughts????

Thanks, that is very interesting. I just read it. I'm heading out to buy some Vitamin D! I live in massachusetts. One part that stood out to me is the fact that Vitamin D decreases the production of the inflammartory cytokines in the brain. And stimulates neurotrophin releases which induces the survival of nerve cells. Also increases concentrations of gluatathione- the brains master antioxident.

Has anyone had results that showed a lack of vitamin D? Just curious. I've been reading about it and how it relates to children with autism. It impairs the PPI (prepulse inhibiton) which interacts with GABA. Just wondering if anyone has any info on the subject. Or has added a vitamin D suppliment and noticed any changes in behavior. I guess it would probably affect more people in the northeast seeing as you don't get as much vitamin D in the winter. I read up on this PPI subject and how some mothers who had influenza (one of two strains) during pregnancy had higher rates of autistic offspring as a result of an immune trigger that increases the levels of MHC Class I molecules with impairs the PPI in children causing issues.

Has anyone had results that showed a lack of vitamin D in their children with PANDAS? Just curious. I've been reading about it and how it relates to children with autism. It impairs the PPI (prepulse inhibiton) which interacts with GABA. Just wondering if anyone has any info on the subject. Or has added a vitamin D suppliment and noticed any changes in behavior. I guess it would probably affect more people in the northeast seeing as you don't get as much vitamin D in the winter. I read up on this PPI subject and how some mothers who had influenza (one of two strains) during pregnancy had higher rates of autistic offspring as a result of an immune trigger that increases the levels of MHC Class I molecules with impairs the PPI in children causing issues. Maybe this is in the wrong section but I was just curious. I will post it in the autism section as well.