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Everything posted by JAG10

  1. 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 o
  2. 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 a
  3. 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.
  4. 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.
  5. 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 st
  6. 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 t
  7. 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
  8. 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.
  9. 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
  10. 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.
  11. 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" whi
  12. 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
  13. 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 thi
  14. 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?
  15. 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?
  16. 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
  17. I don't think that's wrong. I think Laura's questions are spot on; ditto.
  18. 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?
  19. 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?
  20. 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-neu
  21. 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, de
  22. I will keep you posted! Hopefully they will cross paths and cross the finish line in this crazy rat race!!!!
  23. 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.
  24. 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.
  25. 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.
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