JAG10

There is some information you should take into consideration when evaluating this warning's relevance to your situation, both pro and con. This is not a pediatric study. The mean age was 49. Underlying cardiac status and contributing disease are key to evaluating relevance. This study was based on a 5 day course. Many of our children are using Zithromax prophylactically, months or years on end. Nobody knows how that changes outcomes. The best thing to do is to discuss this with the prescribing physician. When I discussed this with my girls' doctor, she felt Zithromax was the safest option for my girls, better than Augmentin. Both of my girls have normal EKGs in their files and there is no immediate family history of cardiac disease. There was a reason she preferred Zith over Aug based on our family history, but I can't recall what it was, sorry. Add it to your list of questions for your next appt.

Thanks ladies! DD13 actually has a lot of anxiety about this, but I'm making her go. She has normal social skills once she deems you safe, but as a protective mechanism with tweens and teens, her "girl world" is getting too small. She needs to develop tools other than avoidance of girls who partake in any drama. You can interact with girls without becoming completely entangled in girl drama.....take it from me, I work in an elementary school and those drama girls grow up to be drama women! The camp is all girls. I have discussed my dd's avoidance of girl drama with the director and why I want her to experience that she can navigate the "world of girl" and make it out the other side (her closest friends are all boys, to the point she feels out of sorts when the grade is divided by sex.) The director has been very response and totally gets where I am coming from as well as my daughter's type. But I didn't get into PANDAS too much, I just said that she had medical issues in the past that impacted her confidence. I sent her an email about the vaccines and medications and she suggested I speak with the nurse. I'm going to try and befriend the nurse so hopefully I can call and check in via her. I haven't decided if I'm going to use the P-word with the nurse....... The camp session is 3 weeks. Lots to worry about, lots of risks...hopefully lots of rewards.

Any of you with older kiddos try overnight camp? I think it will be really good for my dd13 so I signed her up. Now I'm looking at the medical forms with dread..... Ok, we have a medical exemption for the Dtap booster and meningitis, we are getting tetanus titers measured. I hope that'll do it? Then the meds...they want this info almost 3 months in advance and written by a doctor. hmmm. We are still "tweaking" so I'm not ready to send it in yet. Anyone with any experience? She does have anxiety about this, but I know after a day or two, she will be so proud of herself. Everything is always so complicated, isn't it???

Well....... This is interesting. Doctor was sending me the form in the mail that needed to be signed by the deadline. They sent the wrong person's form..... Poor Marge, she needs to sign she is refusing a colonoscopy....... So insurance companies are building cases if you don't do what is recommended, when it is recommended. It's not just vaccines.

911RN- question for you..... I work in an elementary school- high risk environment like you. I chose to get vaccinated for flu for many years. The past two years, I have not....and I got the flu the past two years. So, I am considering making a different decision next year. But then I consider the 62 year old 4th gr teacher down the hall from me who got the flu shot this year and got the flu way worse than I did with atypical symptoms....heart palpitations and sick for 3 weeks!!! I'm sure partly due to her age, but I read that especially older folks are more susceptible with the wrong strain flu shot than no shot at all. Do you know anything about the complications of when "they" get the strain wrong?

I was a trusting parent who is now an on the fence parent. I'm not convinced all vaccines are poison for everybody....but they are for some and the adamant denial and failure to pursue that fact masked behind first-denial and second- the " greater good" makes me resentful and untrusting of the entire system. The louder the call to mandate vaccinations becomes the more reluctant I feel. I never thought of myself as a conspiracy chick, but it'd be a lie to say I'm not feeling more and more suspicious. I will ask doctors I trust about tetanus for my dd13. So in CA, do the students have to consent? Or they are vaccinating them all with Gardisil want it or not? How is that not assault???

I'm sure it starts out with old fashion bullying and pressure. So, if you are on the fence, this will push you toward vaccinating. Individual states are having their own battles as to how far they will push vaccination and education policies. I have graduate students who I supervise for speech-language pathology and they are required to have their titers measured and re-vaccinate if necessary. In a class of less than 30, 3 were administered boosters that did not take. I wonder how far they will go to keep re-administering? These people have over a hundred thousand dollars invested in their education and then to pass go, they need to be jabbed.

I don't know about that. My girls were fully vaccinated until 2010. I believe the letter that you sign lists the vaccines you are refusing. So you could get parts of the dTap listed that you refuse. We have a medical exemption letter that is global. Flu is not included in the letter. Clearly there is some differentiation being applied between vaccines like flu & Gardisil and dTap & meningitis.

The doctor's office called yesterday..... I need to sign a letter that I am refusing dTap and meningitis for dd13. These are the shots she is out of compliance with (not really sure why Gardisil isn't on that list because she hasn't had that either.) This needs to occur, either up-to-date on those two vaccines or sign the letter by March 26 for my particular insurance to keep paying this doctor (who is supportive of parental vaccine decisions.) Other insurances are requiring this as well, but apparently my insurance has the quickest deadline. I ask the admin., "so what does signing this letter mean to my girls?" She says nothing; it's part of ObamaCare but we have the right to refuse vaccination in PA. I have a bad vibe this is just the first step in a progression to support the ever increasingly pushy vaccine agenda. Wow, are they getting pushy lately!!! Hospital workers, college students with any practicums in health care or education are being jabbed left and right. I'm sure mandated teacher flu shots are coming. The insurance company needs this letter verifying we are refusing these vaccines. huh. Haven't received the letter yet. Googled some last night and found one by the AAP about vaccination refusal...charming. There were also opposing refusal letters obviously authored by those who question vaccine efficacy and safety AND don't like the way the AAP document is worded or designed. Here's a copy if you want to see it yourself. http://www2.aap.org/immunization/pediatricians/pdf/RefusaltoVaccinate.pdf My dd13's tetanus titers were measured in 2010 and she was fine. I will get them remeasured. Based on her response or lack of response to other conjugate vaccines, I don't think the meningitis one would take anyway, so why risk it? Anybody else gotten this call? Wonder if the ACLU is going to defend parents who don't want their children vaccinated?

I think between $600-700 for the initial evaluation and blood work. When I say she doesn't take insurance, I mean you have to pay up front and then you submit for reimbursement. She'll get you started on a treatment plan and then follow-up 4-6 weeks later which runs $475/hr or portion thereof. You email her an update ahead of time so she keeps the appt tight. She will not replace a pediatric doc tho.....none of these guys will. I've spent a lot of money on a lot of specialists and Dr O'Hara is worth her weight in gold.

Dr. Nancy O'Hara is 20 min from Dr. Bouboulis in Wilton, CT. The two of them share several patients. You can likely get in with her before 6 months, but she is private pay.(Someone on FB said a new patient appt with Dr. b is late August) Whether your child has PANS or pandas or none of the above, that pediatrician's response to your concerns and observations was very telling of his approach to medicine and patients. The Ped we had at the time of diagnosis wasn't a completely on board doc either, but she listened and gave me her "this is what I know and this is what I don't know" which is fair. We did end up leaving her and getting another doctor who is also a DAN doctor. Even though my girls are not autistic, DAN doctors tend to be more open-minded than chapter and verse from the AAP and don't you dare lower my practice vaccination stats.

Hang in there Fixit! I have no answers; seems like a variation on questions we've been asking in this thread; high or low; production or reception.....and then......related to infection or not? Were you saying the difference between test 1 and test 2 was supplements? Not illness? Different types of dopamine, different areas of the brain and different symptomology.....so some kids with seemingly "opposite" symptoms can both respond positively to the same medication? As far as being a guinea pig goes, it's the nature of this beast. Line up your possible interventions and do a risk/benefit analysis. That's why I am interested in Amantadine....it's very low risk, been around since late 1960's, operates as a different mechanism then meds she's already tried and those who have tried it for ADD mostly report positive results and the others report "did nothing", not much mention of "bad side effects." My dd13 is not a ticcer as a primary symptom, only when really sick with pandas and honestly, the ticcing was probably from stimulants. But my dh's aunt has Parkinson's, so we all swim in the same pool, if you know what I mean. I really hope you feel better. Like all of this isn't overwhelming to begin with, when we are sick, it can become too much to bare. Stay strong. jag

The main reason I asked Dr. O'Hara about Amantadine for my dd13 was because of the family history of Parkinson's, MS and ADD on my husband's side and low prolactin on my side (influenced by dopamine)From what I've read, Amantadine is no longer effective for influenza A, but who knows. Karen- thank you for sharing. I wonder if you took a "low and slow" approach to tyrosine if you would be able to find your sweet spot? Amantadine comes in liquid and 100 mg capsules. I have a phone consult on Tues with her and my questions will be specific with the titrating process for Amantadine. I'm thinking the liquid gives one much more control to go low and slow similar to what we would hear for an SSRI. Those who have tried Namenda, have you had similar experiences? Was it a standard dose or did you need to find a sweet spot not to upset your kid's apple cart?

It's interesting how so many of these conversations involve the "too high or too low" debate where we pseudo scientists try and figure out what's going on and we end up in a state of confusion.......is dopamine too high or too low? Is the problem histamine is too high or too low? Is it ASO or anti-DNAse B antibodies are too high or completely absent? And then there's the fact that its never that simple anyway. Different types of dopamine affecting different areas of the brain.......if you try and use meds to regulate the dysregulated areas, will you upset the apple cart in other areas? I guess all that's left is trial and error. My personal guess is that a child can have some "baseline dopamine dysregulation" that is made more unstable and magnified beyond recognition with infections. Some kids may not have any baseline dysregulation- those would be the completely normal to nuts kids and some may have a considerable amount.

But still doesn't help with the whole "blockage" versus production question...... Or what to do about it. Wonder if its a low n slow scenario with Amantadine?

I found this summary that explained that there are two different dopamines (I'm guessing d1 and d2). So it's not a see-saw, but more independent. Dopamine: Parkinson’s Disease and ADHD to Smoking and ParanoiaDopamine is a neurotransmitter linked to motor/movement disorders, ADHD, addictions, paranoia, and schizophrenia. Dopamine strongly influences both motor and thinking areas of the brain. One type of Dopamine works in the brain movement and motor system. As this level of dopamine decreases below the “normal range” we begin to experience more motor and gross-movement problems. Very low levels of Dopamine in the motor areas of the brain are known to produce Parkinson’s Disease with symptoms such as: Muscle rigidity and stiffness Stooped/unstable posture Loss of balance and coordination Gait (walking pattern) disturbance Slow movements and difficulty with voluntary movements Small-step gait/walking Aches in muscles Tremors and shaking Fixed, mask-like facial expression Slow, monotone speech Impairment of fine-motor skills Falling when walking Impairment in cognitive/intellectual ability Dopamine in the thinking areas of the brain might be considered the neurotransmitter of focus and attending. Low levels impair our ability to focus on our environment or to “lock on” to tasks, activities, or conversations. Low levels of Dopamine make concentration and focus very difficult with low levels also associated with Attention-Deficit Hyperactivity Disorder (ADHD). On the other end of the Dopamine dipstick, as Dopamine levels in the brain begin to raise, we become excited/energized, then suspicious and paranoid, then finally hyperstimulated by our environment. With low levels of Dopamine, we can’t focus while with high levels of Dopamine our focus becomes narrowed and intense to the point of focusing on everything in our environment as though it were directly related to our situation. Mild elevations in Dopamine are associated with addictions. Nicotine, cocaine, and other substances produce a feeling of excited euphoria by increasing Dopamine levels in the brain. Too much of these chemicals/substances and we feel “wired” as moderate levels of Dopamine make us hyperstimulated – paying too much attention to our environment due to being overstimulated and unable to separate what’s important and what is not. In an ADHD child, low levels of Dopamine don’t allow the child to focus or attend to anything in the environment, looking very physically hyperactive when running about the room or switching from activity-to-activity due to their lack of focus. As Dopamine levels increase above the normal range, our ability to focus increases to the point of being paranoid. Mild elevations make the environment overly stimulating and excited. Moderately high Dopamine levels make us on-guard, suspicious, and prone to misinterpret experiences in the environment. Known as an “idea of reference” in psychiatry, we begin thinking unrelated experiences are suddenly directly related to us. People observed talking across the street are now talking about us. As Dopamine increases, it can become so intense that we feel the radio, television, and newspaper contain secret messages directed at us from Hollywood or elsewhere. It’s as though we are attempting to incorporate/add everything we witness into our life. Planes flying overhead are snapping pictures of us and motorists talking on cellular phones are calling in a report on us. Our mind speed increases and races in an attempt to add all we see into our life. In an attempt to make sense, we may become extremely religious, paranoid, or feel we are a very important person. Increased Dopamine also increases the perception of our senses, as though turning up the volume in all our senses – hearing, vision, taste, smell, and touch. As Dopamine levels increase, the noises we heard loudly suddenly become auditory hallucinations. Our inner thoughts are now being heard outside our body. These “voices” begin talking to us, known to take different forms such as derogatory (putting you down), religious topics, command (telling you to do something), or sexual content. Hallucinations (experiencing something that is not truly there in reality) will soon develop in all our senses. We may begin seeing faces in clouds, carpets, or patterns. We may sense the touch of spirits or movements inside our body. We may experience unusual smells or tastes. High levels of Dopamine in the brain often cause us to lose our contact with reality. As though living in a science-fiction movie, we begin to develop unusual if not bizarre ideas about what is happening to us. With our paranoia, we may experience delusions (false beliefs) of persecution or may think we have super powers (delusions of grandiosity) and can predict the future or read minds. High levels of Dopamine are found in Schizophrenia, drug intoxication, and other psychotic conditions where the ability to distinguish the inner world from the real world is impaired. Treatment for psychiatric/medical conditions associated with Dopamine imbalance, as you might expect, involves increasing or decreasing Dopamine levels in the brain. Low-Dopamine disorders are treated with medications that increase Dopamine in the brain. For Parkinson’s Disease – L Dopa is prescribed and for ADHD, medications that are psychostimulants. Amphetamines and medications with similar action actually slow down the hyperactive (ADHD) children by increasing Dopamine – boasting their level into the normal range, allowing them to now focus and attend. Mildly elevations in Dopamine are associated with addictions such as narcotics, speed, and nicotine/smoking.Thus, medications used in the treatment of addictions actually block or lower Dopamine production. If a medication blocks dopamine, it also blocks the effects of the addicted substance as well as blocking the craving sensation. The medication to help smokers, Zyban, is actually the antidepressant Wellbutrin that is known to block Dopamine. Moderate to high levels of Dopamine, associated with severe psychiatric conditions such as Paranoia and Schizophrenia, are treated with medications that block or lower Dopamine in the brain. These medications, called antipsychotics, have been available for many years. Early antipsychotic medications however, lowered Dopamine throughout the brain, including the Dopamine located in the motor/movement areas. For that reason, older antipsychotic medications produced motor/movement problems that looked like Parkinson’s Disease – short-step gait, fixed facial expression, tremors, poor balance, etc. Newer medications have fewer side effects in motor areas, as they are able to specifically target one type of Dopamine. Dopamine levels typically change very slowly. Patients who develop Paranoia and/or Schizophrenia often experience a gradual increase in Dopamine levels over several years – also experiencing an increase in the severity of symptoms over those years. A typical high school or college student may develop a sense of being on-edge or unusual feelings, gradually becoming suspicious and feeling alienated, moving into auditory hallucinations, and finally developing bizarre false beliefs (delusions) of persecution or exaggerated self-importance over the next several years. Stress can often rapidly increase Dopamine, but it still rarely happens overnight. When an individual becomes psychotic, paranoid, and hallucinates in only a few days, we must strongly suspect medication/drug intoxication or neurological events – something that could increase Dopamine levels dramatically and almost instantly. The prolonged use of amphetamines (speed) or steroids can produce a loss of reality and sudden paranoia. As it might happen, a construction worker taking “street” speed to increase his work productivity finds his hand or foot talking to him (auditory hallucinations) and decides to cut it off. The sudden presence of psychosis (hallucinations, delusions, paranoia, etc.) in an individual with a history of prior normal adjustment would suggest the need for intensive medical and neurological workup.

I don't think that's wrong. I think Laura's questions are spot on; ditto.

Linda- Did this statement go specifically with one of the results? How could "too much dopamine" release be both the result of Very High d2 and low d2; both of whom are symptomatic albeit different symptoms? And who mentioned d4.....where the heck does that fit in?

Dopamine levels are determined by urine but Cunningham's level of anti neuronal dopamine receptor antibodies is done by serum. Can Dr. Cunningham determine if a patient has high or low dopamine or only if they are producing high amounts of the dopamine blocking antibodies?

Linda- which symptom set went with which receptor-d1 or d2? When dd13 was at her worst, she had it all but raging. The tics were the first to go and not seen in a long time. She is more OCD/anxiety and focus. If I look at both of our families there is plenty of addiction, Parkinson's, anxiety, ADD....across families it seems there is a low dopamine issue. I just wonder if this is separate from PANS? IDK, I have a phone appt with Dr. O'Hara next week and will ask but I'm afraid the answer will go over my head. And when you say "receptor's blocked" you mean because there are anti-neuronal dopamine receptors antibodies in the blood binding to the receptors preventing the body's dopamine from reaching its destination effectively? Has Dr. Cunningham explicitly concluded the relationship between the anti-neuronal antibody measurements and the Cam measurement?

Hi friends, This is piggy-backing off the Amantadine topic. Can you teach me about the dopamine receptor 1 and the dopamine receptor 2? The Cunningham test measures anti-neuronal antibodies in the serum that interfere with dopamine reaching those receptors? Which raises dopamine levels and causes behavioral symptoms???? What's the difference, symptom-wise, between the two receptors? 3boysmom commented that her son has HIGH dopamine levels.....is that determined by symptoms or in the serum? I think my dd13 has symptoms of low dopamine, specifically decreased attention/focus, decreased motivation, procrastination, boredom, decreased confidence, and some decrease with ease of verbal communication. These are typical ADD symptoms and make life a little harder than it has to be. These symptoms all completely resolve with prednisone, but what does that tell me? Does that mean the prednisone diminishes anti-neuronal dopamine receptor antibodies? You can't do Cunningham on steroids, so it must have some impact, right? Do steroids impact dopamine production? We both have low prolactin which has a direct relationship with dopamine as well. Maybe she just has low dopamine that has nothing to do with PANS??? Amantadine is a dopamine agonist which means it should increase dopamine (reception?) Am I totally confused or know just enough to be dangerous????? Thoughts? help??? Jill

I will keep you posted! Hopefully they will cross paths and cross the finish line in this crazy rat race!!!!

Amantadine is very, very off label for ADD. My girl saw psych for years and tried many stimulant and non-stimulant ADD drugs and I never heard Amantadine mentioned until we saw a biomed doc. It is not a stimulant nor anti-depressant.

As far as I can tell, it is no longer effective as an antiviral. It is used to treat ADD, more for attention than hyperactivity, MS and Parkinson's. since my dh's family tree bares all three of these conditions, it seemed like a good one to try. It is a weaker version of Namenda blocking NMDA-type glutamate receptors. I'm guessing that will be more diagnostic/meaningful to the docs if it is effective. Oxytocin was suggested for social anxiety down the road.

My dd13 AST and ALT went CRAZY high, like 700's and 400's, in three weeks on Bactrim. It went back to normal as soon as she stopped. We realized she has a sulpha allergy like I do.