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WorriedDADNMOM

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  1. Like
    WorriedDADNMOM reacted to Sheila in A note about Facebook pages   
    I would like to clarify my position on posts that offer Facebook links, as I have been the subject of criticism by someone related to this issue and believe there is a misunderstanding.

    A couple of weeks ago a newbie member asked in her first post about finding a PANDAS doctor in a particular state. Rather than providing information so that this mother and others could benefit, the new member was directly instructed by an advanced member to join a Facebook page she was involved with, and all the benefits of doing so were extolled. I took exception to that approach and made the post invisible. I explained my concern to the advanced member.

    Facebook communication is a great resource and we certainly don't have any problem with people learning about Facebook sites through the Forum. In fact many threads on this Forum specify Facebook pages.

    What we would appreciate though, is that if someone asks a question, rather than immediately drawing that person away from the Forums to join a Facebook page, please provide answers on the Forums and then feel free to include info about a relevant Facebook page.

    We often hear from people who tell us they are grateful for the Forums because they don't get on Facebook at all (believe it or not!) and they are looking for help right here. We want to meet the needs of everyone, and we want to keep the Forums strong for the benefit of all.

    Many will recall that we were the first to have a PANDAS Forum, beginning in 2008. Controversies were raging and it took a lot of monitoring to keep things on track. My hope now is simply that helpful participation continues.

    We greatly appreciate everyone's help in keeping these Forums strong. You are the ones who make it the valuable resource that it is.
  2. Like
    WorriedDADNMOM got a reaction from emst in Increased flare when starting ABX?   
    I would say for us, we did see an increase in some signs. Tics.....and.....letdown of mucous on previous asymptomatic infections.(other than behavior)
     
    Are you on a DAN protocol???? There is a list of good practitioners......Here it is.
     
    http://pandasnetwork.org/researchandresources/find-help/usproviders/
     
    We did talk to Dr K in Chicago upon learning about Pandas/Pans back in 2011. We did not want main stream medicine as we felt it was over their heads. We ended up finding a DAN doc for the behaviors..... the Doc in Gahanna(columbus area) OH whom we have been VERY pleased with.
     
    If your child does not see one....I recommend seeing one that can:
     
    1) debulk infections.
    2) Chill immune system.
    3) control inflammation.
    4) Check for food allergies and others.
    5) Supplement vitamins and minerals that are lacking.
    6) Control and support future infections.
     
    Finally, it really is a puzzle of many/various things that need looked at. It must be a comprehensive investigation into our kiddos to help them be the best.
     
    PM me if you need anything else.
  3. Like
    WorriedDADNMOM reacted to nicklemama in disappointed / pissed by neurologist app't -- what should I have expected?   
    I hate to be an echo but......move on. I was told by a neurologist that my son's sudden, dramatic change was due to my lack of firm and consistent parenting. I took him there because he was so suddenly not himself in such a dramatic way, I thought he might have a brain tumor. It was the first of my many disappointments with doctors.
  4. Like
    WorriedDADNMOM got a reaction from emst in disappointed / pissed by neurologist app't -- what should I have expected?   
    Wisdom....Move on.
     
    I really recommend NOT PAYING!!!!! If you not happy with the service or appt.....treat it like a meal or any other service.....don't pay the bill.
     
    Explain why to them and definitely move on. Try to find a pandas friendly doc/Integrative Pedi in your area.
     
    Best of luck to you!!!!
  5. Like
    WorriedDADNMOM got a reaction from dcmom in disappointed / pissed by neurologist app't -- what should I have expected?   
    Wisdom....Move on.
     
    I really recommend NOT PAYING!!!!! If you not happy with the service or appt.....treat it like a meal or any other service.....don't pay the bill.
     
    Explain why to them and definitely move on. Try to find a pandas friendly doc/Integrative Pedi in your area.
     
    Best of luck to you!!!!
  6. Like
    WorriedDADNMOM got a reaction from billn in Sleepless in South Bend   
    Billn, I would absolutely trust your instincts. The way our DAN/Integrative pedi said to us.....healing first...... then the absorption of what your trying to teach and change can take root.......pandas is like having a cellophane wrapped sponge. You can do CBT and other counseling.....but poking holes in the wrapper......good......keep at it........however.........but taking off the wrapper......it will absorb so much more.......kinda weird description.......I know. But for us, our worst pandas kiddo improved tremendously. Physically for sure in every way....but emotionally, cognitively, adhd improved, compassion and empathy improved, self confidence, interest in other things not previously........really in every way she improved. And this was WITHOUT CBT OR COUNSELING.
     
    Are there bad days...yep.....but the waxing and waning of this can and does get better. I really suggest doing as much as possible to prevent and treat future infections.
  7. Like
    WorriedDADNMOM got a reaction from kim in Could it be PANDAS/PANS PLEASE HELP   
    I would concur with what everyone is saying. I also sent you a PM from your PM to me.
     
    I noticed you said pasta and rice as preferred foods. In our world what our kiddos like is most likely what is hurting them. That much starch and I would consider candida or at the very least a little bit of dysbiosis.
     
    The standard of care is treating the symptoms with SSRI or therapy......etc................Most good docs with any pandas success will be more integrative and or homeopathic to treat ACTUAL bio-medical issues that are going on physiologically that are contributing to behavior, appetite, growth and muscle tone, temperament, attitude, happiness........virtually every way shape and form we improved.
     
    Let me know if you need any thing else.
  8. Like
    WorriedDADNMOM got a reaction from lnn in I just really need some help/advice   
    mmiglio, I want to 2nd what llm is talking about...methylation. I think for us.....the most profound part was ALL THE MANY WAYS our DD improved as it pertained to OCD, tics, mood, compassion, empathy, happiness, behavior(Opp Defiance) conflict resolution, ADHD and focus......in addition to muscle tone and growth. Literally...... Ever major aspect of her life improved.....almost to the point of complete normalcy where CBT or counseling were not needed. this is slowly becoming our new normal. Easy...NO easier, ABSOLUTELY.
     
    We see leading DAN Integrative Pandas pedi in Ohio. We really chose the "natural" route. With that said.....Long term zith would be great. However, for us.....all the supplements have been huge and each one in their own way are a part of the healing and dealing with our kiddos. PM me if you want more specifics.
  9. Like
    WorriedDADNMOM reacted to BeeRae22 in Sudden onset of TICs/OCD behavior   
    Also wanted to add, for those of you beginning this journey- take notes and chart everything- behaviors, sleep patterns, diet, etc. This information will be very useful down the road.
  10. Like
    WorriedDADNMOM got a reaction from stacestar in Sudden onset of TICs/OCD behavior   
    theolis and sriramcs---------------I REALLY WANT TO ENCOURAGE YOU.....Your kiddos can and will get better. You just need the right approach for your kiddos individual needs. You really need to get to an Integrative Pedi from this website below. I found our doc from Gahanna,OH that is now a "Leading Physician." I cannot say enough good thinks about him. I am glad we found him back then....3-4 years ago before he was considered well known.
     
    http://pandasnetwork.org/researchandresources/find-help/usproviders/
     
    It is a very comprehensive approach. Summation follows:
     
    1) Debulk any infections(viral, bacterial, fungal and parasitic) It could be a combo of more than one. Many times it is multifactoral from infection(s) or cascade of multiple infections.
    2) Cool or chill the immune response and control inflammation caused by above issues in #1.
    3) Targeted nutrient therapy to give the body the high octane fuel it needs to balance what is going on, heal and function properly and efficiently.
    4) Eliminate allergy triggers (foods,pets, etc) to again give the immune response a chance to chill out.
    5) Finally implement a plan for dealing with future bacterial and viral infections to prevent the infection cascade that many times happens as a part of #1 that started the whole thing. I cannot say enough about Zinc, vit c and vit a as a sick protocol.
     
    I, again want to say....Stay encouraged, get information, research and advocate for your kiddos. I will say don't waste time trying to chase or convice main stream medicine about Pandas or Pans. They just can't or won't deal with it. Still trying to figure out why.
     
    Here are some other links that really helped us on our journey. Good luck and God Bless. Any thing you need just PM me. I hope this info helps.
     
    http://www.bing.com/videos/search?q=dr+nancy+ohara&FORM=HDRSC3#view=detail&mid=B8315FFF5F842E135A81B8315FFF5F842E135A81
     
     
    5-6 part series worth watching....Think about your family history when watching it. It kinda comes down to methylation as a possible link to many disease process as they relate to Neuro-Immune Syndromes.
     
    http://www.bing.com/videos/search?q=dr%20kendall%20stewart&qs=ds&form=QBVR#view=detail&mid=2B4C4D2EB859CA78F0912B4C4D2EB859CA78F091
  11. Like
    WorriedDADNMOM got a reaction from BeeRae22 in Sudden onset of TICs/OCD behavior   
    theolis and sriramcs---------------I REALLY WANT TO ENCOURAGE YOU.....Your kiddos can and will get better. You just need the right approach for your kiddos individual needs. You really need to get to an Integrative Pedi from this website below. I found our doc from Gahanna,OH that is now a "Leading Physician." I cannot say enough good thinks about him. I am glad we found him back then....3-4 years ago before he was considered well known.
     
    http://pandasnetwork.org/researchandresources/find-help/usproviders/
     
    It is a very comprehensive approach. Summation follows:
     
    1) Debulk any infections(viral, bacterial, fungal and parasitic) It could be a combo of more than one. Many times it is multifactoral from infection(s) or cascade of multiple infections.
    2) Cool or chill the immune response and control inflammation caused by above issues in #1.
    3) Targeted nutrient therapy to give the body the high octane fuel it needs to balance what is going on, heal and function properly and efficiently.
    4) Eliminate allergy triggers (foods,pets, etc) to again give the immune response a chance to chill out.
    5) Finally implement a plan for dealing with future bacterial and viral infections to prevent the infection cascade that many times happens as a part of #1 that started the whole thing. I cannot say enough about Zinc, vit c and vit a as a sick protocol.
     
    I, again want to say....Stay encouraged, get information, research and advocate for your kiddos. I will say don't waste time trying to chase or convice main stream medicine about Pandas or Pans. They just can't or won't deal with it. Still trying to figure out why.
     
    Here are some other links that really helped us on our journey. Good luck and God Bless. Any thing you need just PM me. I hope this info helps.
     
    http://www.bing.com/videos/search?q=dr+nancy+ohara&FORM=HDRSC3#view=detail&mid=B8315FFF5F842E135A81B8315FFF5F842E135A81
     
     
    5-6 part series worth watching....Think about your family history when watching it. It kinda comes down to methylation as a possible link to many disease process as they relate to Neuro-Immune Syndromes.
     
    http://www.bing.com/videos/search?q=dr%20kendall%20stewart&qs=ds&form=QBVR#view=detail&mid=2B4C4D2EB859CA78F0912B4C4D2EB859CA78F091
  12. Like
    WorriedDADNMOM got a reaction from sss in Sudden onset of TICs/OCD behavior   
    theolis and sriramcs---------------I REALLY WANT TO ENCOURAGE YOU.....Your kiddos can and will get better. You just need the right approach for your kiddos individual needs. You really need to get to an Integrative Pedi from this website below. I found our doc from Gahanna,OH that is now a "Leading Physician." I cannot say enough good thinks about him. I am glad we found him back then....3-4 years ago before he was considered well known.
     
    http://pandasnetwork.org/researchandresources/find-help/usproviders/
     
    It is a very comprehensive approach. Summation follows:
     
    1) Debulk any infections(viral, bacterial, fungal and parasitic) It could be a combo of more than one. Many times it is multifactoral from infection(s) or cascade of multiple infections.
    2) Cool or chill the immune response and control inflammation caused by above issues in #1.
    3) Targeted nutrient therapy to give the body the high octane fuel it needs to balance what is going on, heal and function properly and efficiently.
    4) Eliminate allergy triggers (foods,pets, etc) to again give the immune response a chance to chill out.
    5) Finally implement a plan for dealing with future bacterial and viral infections to prevent the infection cascade that many times happens as a part of #1 that started the whole thing. I cannot say enough about Zinc, vit c and vit a as a sick protocol.
     
    I, again want to say....Stay encouraged, get information, research and advocate for your kiddos. I will say don't waste time trying to chase or convice main stream medicine about Pandas or Pans. They just can't or won't deal with it. Still trying to figure out why.
     
    Here are some other links that really helped us on our journey. Good luck and God Bless. Any thing you need just PM me. I hope this info helps.
     
    http://www.bing.com/videos/search?q=dr+nancy+ohara&FORM=HDRSC3#view=detail&mid=B8315FFF5F842E135A81B8315FFF5F842E135A81
     
     
    5-6 part series worth watching....Think about your family history when watching it. It kinda comes down to methylation as a possible link to many disease process as they relate to Neuro-Immune Syndromes.
     
    http://www.bing.com/videos/search?q=dr%20kendall%20stewart&qs=ds&form=QBVR#view=detail&mid=2B4C4D2EB859CA78F0912B4C4D2EB859CA78F091
  13. Like
    WorriedDADNMOM got a reaction from nicklemama in Violent rages and ODD   
    Do you have a Integrative pedi you can get to? Lithium orotate st Johns wort, all natural supplements have been huge. I really recommend that getting to a DAN or integrative pedi that can assess thoroughly your kiddos situation.
     
    Feeling for your situation and hoping for the best for you and your kiddos. Let me know if you have any other questions.
  14. Like
    WorriedDADNMOM reacted to nicklemama in Anyone have research linking vaccines to ASD?   
    Here's one link about H1N1 vaccine. Most of the research I find is about the flu vaccines. No one is researching vaccine damage. No money and it's certainly not in the interest of the pharmaceutical co's. They are the only ones doing the vax research and it's in their interest to make it loom worth while.
     
    http://www.naturalnews.com/043665_swine_flu_vaccine_narcolepsy_scientific_research.html%23
     
    This is a link to a moms blog. She's a scientific reporter and debunks some myths perpetuated by big pharma, in collaborating with media and our govt.
     
    http://gianelloni.wordpress.com/
     
    My son developed PANS two days after a flumist vax and 6 months following his MMR and chickenpox vax. He had some behavioral changes after the MMR and chickenpox vax that lasted a few months but were nothing like the 'big one' following flumist. In hind sight, this was a warning sign and the ball may have already been set in motion. Most PANDAS docs now say there are early, mild episodes before the big one that gets your attention.
  15. Like
    WorriedDADNMOM got a reaction from lpop in Acute Onset of tics   
    Yep, textbook, carbon copy....you name it........ Pandas/Pans!!!!!!
     
    I would say your in a good place. Your here, your docs giving abx on board.
     
    I would just ask where are you located??? Got a Pandas Literate doc???
     
    PM me if your in the midwest and want a great doc in Ohio.
  16. Like
    WorriedDADNMOM got a reaction from sss in looking for expert advice....pandas labs, treatment for a veteran pandas parent   
    Basil, Glad your here. Our stories very similar...... Several issues and observations. Let me know if you have any questions I can help with. For us it really was a step by step cascade of increasing symptoms. We have had adverse reactions to vaccines AND bacterial and viral infections. With that said:
     
    1) Milk allergy is part of the connection. We had behaviors in middle dd before tic explosion and worst major exacerbation.
    2) Eliminating dairy in an intolerant person will help eliminate inflammation and an immune response. During worst of initial exacerbation, yogurt, milk, blue dye......would all cause return or increase in tics/behaviors.
    3) Strep, Mycoplasma and EBV(mono) would be good ones to check. Among others.....need more history...family,previous infections etc.
    4) Zithromax for possibly 30-90 days(or longer) then transitioning to a periodic (m,w,f) prophylaxis to immune system modulation. Dr Schulman has a video of pandas docs using Zith in this manner. Kinda similar to a tapering of steroids. See this link.

    5) Eliminating triggers....milk, pets any thing that illicits an immune or allergy response. .....basically knowing again family history to build as comprehensive a picture as possible.
    6) Determining vitamin and nutrient deficiency. Supplementing where needed.
    7) Omegas-----Cod Liver oil for fighting inflammation and helping heal the brain......."essential fatty acids" that our just that... essential for our body.
    8) Curcumin-----Enhansa.....again anti inflammatory properties.....boosts immune system.
    9) Having a sick protocol to "prop up or assist" immune system during viral or bacterial infections.......Zinc, Vit C and Vitamin A I think.
     
    I know this sounds like a lot.....but it is what we have done and we are in a good place. It is very comprehensive and thorough. I will say that it has all been under the direction and supervision of a DAN/Integrative Pedi. We had 3 kiddos that were all affected by both vaccines and infections(Strep and myco.....and EBV) Our whole house was in a state of chaos, we had to do anything and everything our DAN said to do. We are glad we did.
     
    Should you have any questions, please ask. Good luck and God Bless........It does and can get better.
  17. Like
    WorriedDADNMOM got a reaction from sss in looking for expert advice....pandas labs, treatment for a veteran pandas parent   
    If I am being honest....I don't know. Some of it by testing and dumb luck I guess. My brothers and sisters and I all had this growing up. Eczema, vomiting......most of us were not breastfed due to milk intolerances. Soy formula. As for testing, I did ask the pedi who was not on board with the Pandas thing to test for Mycoplasma. Testing showed very high IgM which I did not find out about for several months later when we were still fighting the tics, behaviors...then tremors and uncontrolled movements and mutism a couple times.
     
    What I do know....3 dd's all with milk "issues" and struggled some with breast feeding and transition to whole milk at 1yo. Oldest......severe eczema on skin no other issues. DD #2 severe projectile vomiting. No eczema.....MANY behaviors post MMR #1 and #2......DD3 youngest......severe colic....and I mean SEVERE. Crying 6-8 hours a day to the point of losing voice. No vomiting and very minimal rough patchy skin. Reactions to MMR #1 and #2 Once we had DD3 and put her on Nutramagin where the formula had the protein broken down she was perfect after that...... up until MMR #1 then #2. This is when we cut milk in DD1
     
    We took DD1 off milk and her eczema vanished to perfect skin. This was key for us learning about our milk connection and subsequent issues. We still had milk quite often up until dd2 "came down" with pandas. We think she definitely had it going on for quite some time.
     
    With that said.....When dd2 behaviors culminated with severe mental, emotional and neuro stuff......tics, uncontrolled movements and tremors....... I started researching Pandas. It was during the initial issue that having her on Penicilin(after amox) started controlling the tics. So this was the a-ha moment that infection and immune dysregulation are a part of her picture.
     
    During the next year.....we tried greek yogurt after tics had been gone for some time. This greek yogurt, unbeknownst to us, had a strep strain in it. Tics were right back. Then we had another issue where we allowed her to have some blue cotton candy.....again within minutes....less than 60....tics come back. I was never understanding of these types of
     
    Fast forward to today.....she is mildly having issues. We still have some very mild, In comparison to previous, behavior and emotional stuff. Very few tics that come out of nowhere, but are hardly noticeable.....except to us parents......and they wane very fast. She can have some cheese and ice cream.....with some belly pain during digestion. I could and probably should eliminate all dairy.
     
    In summation, I think there are issues with infections/ foods/allergies etc that may be internalizing symptoms. And their severity may vary and be under the radar if you will. But after they come to the surface and you start to physically see tics, major behaviors, etc......I think it is easier to correlate a "trigger".....BUT that does not mean there is not something going on internally. We, as young busy parents, missed it with the 1st two dd's and did not figure it out until dd3.
     
    Two of my favorite A-ha videos that really spoke to our situation are as follows. They are pandas, autism and neuro-immune related videos. It really is about connecting ALL the dots. Affecting change in the body by eliminating infections/immune triggers and supplementing where the body can heal itself and and function at peak ability.
     
    I hope this helps you in your journey.
     

     
     

     
     
    Bunch more here:
     
    https://www.youtube.com/results?search_query=pandas+strep
  18. Like
    WorriedDADNMOM reacted to qannie47 in Upcoming Doctor's Appointment   
    Well, he certainly is hitting many of the red flags when looking for a Pandas/Pans link. My advice is that you do not cancel his appointment. If this is Pandas/Pans, you are going to need to put a game plan together with your doctor. There is a very high likelihood that you will continue to see future flares; the faster you treat him with an abx, the faster he will recover from a flare. You have caught this early, this is GREAT news.
     
    I suggest that you read all that you can about this disorder. The more you understand about it's etiology, what to expect, and treatment options, the better prepared you will be to help your son.
     
    Best regards,
    Q
  19. Like
    WorriedDADNMOM got a reaction from qannie47 in looking for expert advice....pandas labs, treatment for a veteran pandas parent   
    Basil, Glad your here. Our stories very similar...... Several issues and observations. Let me know if you have any questions I can help with. For us it really was a step by step cascade of increasing symptoms. We have had adverse reactions to vaccines AND bacterial and viral infections. With that said:
     
    1) Milk allergy is part of the connection. We had behaviors in middle dd before tic explosion and worst major exacerbation.
    2) Eliminating dairy in an intolerant person will help eliminate inflammation and an immune response. During worst of initial exacerbation, yogurt, milk, blue dye......would all cause return or increase in tics/behaviors.
    3) Strep, Mycoplasma and EBV(mono) would be good ones to check. Among others.....need more history...family,previous infections etc.
    4) Zithromax for possibly 30-90 days(or longer) then transitioning to a periodic (m,w,f) prophylaxis to immune system modulation. Dr Schulman has a video of pandas docs using Zith in this manner. Kinda similar to a tapering of steroids. See this link.

    5) Eliminating triggers....milk, pets any thing that illicits an immune or allergy response. .....basically knowing again family history to build as comprehensive a picture as possible.
    6) Determining vitamin and nutrient deficiency. Supplementing where needed.
    7) Omegas-----Cod Liver oil for fighting inflammation and helping heal the brain......."essential fatty acids" that our just that... essential for our body.
    8) Curcumin-----Enhansa.....again anti inflammatory properties.....boosts immune system.
    9) Having a sick protocol to "prop up or assist" immune system during viral or bacterial infections.......Zinc, Vit C and Vitamin A I think.
     
    I know this sounds like a lot.....but it is what we have done and we are in a good place. It is very comprehensive and thorough. I will say that it has all been under the direction and supervision of a DAN/Integrative Pedi. We had 3 kiddos that were all affected by both vaccines and infections(Strep and myco.....and EBV) Our whole house was in a state of chaos, we had to do anything and everything our DAN said to do. We are glad we did.
     
    Should you have any questions, please ask. Good luck and God Bless........It does and can get better.
  20. Like
    WorriedDADNMOM got a reaction from MomWithOCDSon in Update: I Need to Brag   
    Only us parents can understand your pride and bragging!!!!! Glad to hear it!!!!!
     
    My kiddo 11yo dd.... hopefully follows the same path of success!!!! Sometimes I would trade top 1% nationally for math for her grade.......versus....for some sanity and an "average" or "normal" kiddo with our worst pandas kiddo. Still making headway.....but still scared to death of a major exacerbation.
     
    Thanks for sharing!!!!!
  21. Like
    WorriedDADNMOM reacted to cara615 in Anyone have research linking vaccines to ASD?   
    I will be completely honest - no flames please (although I think y'all are on the same page as me). I was a vax skeptic when my kids were born. I did not allow the hep vax to be given in the hospital. One of the nurses told me that I could get her fired if I did not give it to my kids. I told her that is not my problem!! My kids are my responsibility!! At our ped's office I had them on a VERY delayed schedule. 1 shot a year. I had a pediatrician come at me with threats that i was harming my kids and I should be locked up!
     
    At 6 years old my kids have had dTAP, polio, prevnar, HepA, HepB and HIB - no boosters for any of these except the dTAP. So maybe in total 7 shots each. I stopped vaxing completely when they were 4 years old. I have to write a religious exemption for every school they attend.
     
    Ok so fast forward, I now have one kid with PANDAS. Our integrative MD (dr. Tasneem Bhatia - google her) told me straight faced that I saved my son from autism. She said that if i had continued with the vax's he would have regressed and gone further "on the spectrum".
     
    Our new Dr. (Bradstreet) studies both Autism and PANDAS extensively and has proof that autism is also immune system based. He showed me some complex diagram about how these macrophages from the mother get into the child in utero and take up residence in the child's brain. He lost me after that point but I know that macrophages kill infections and are an integral part of the immune system.
     
    Vaccines create artificial heightened responses from the immune system not including all the preservatives and heavy metals that are toxic to the body. This combination given to a child who is already VULNERABLE from birth can cause the perfect storm of reactions thus creating an environment for neurological damage to occur.
     
    I look at it as I saved my son.
  22. Like
    WorriedDADNMOM got a reaction from TeamTyrion in PANS/PANDAS doctors in Canada?   
    Most of us here in the US are in the same boat. It is getting much better though. If you can consider self pay, there are some in Mich and Ohio that are VERY good (ours) or some that have been recommended.
     
    Best of luck. Let me know and I can PM you.
  23. Like
    WorriedDADNMOM got a reaction from T_Anna in Dr. T in Ramsey - everybody must read   
    I want to 2nd what Nicklemama said......."You get what you pay for" and a little spin on it..."you don't get what you don't pay for"
     
    I told an ID doc to take roughly 800.00 worth of bills and "stick them anywhere the sun won't shine"....pretty much that way. I even told our initial pedi, whom charged me after insurance a 100.00 bill the same thing for telling my dd to put a smooth rock in her pocket to deal with the post strep and EBV anxiety. This is not health care as it should be. I have spent roughly 15k on a good doc for tests, visits, supplements with good results for three kiddos. I refused payment on about 1000.00 to docs who gave me NOTHING. You tell me where the value is. I have said this before, how can you put a value on your child being happy, healthy and thriving.......or even your family functioning well.
     
    Also, when we are not in control of the money(insurance co is) your not paying, so the docs are not beholden to you as a patient....but to the insurance company. Thus, you don't get the care you may need, want or deserve.
     
    SSS-----you have a good plan....my plan is 900.00 a month for as 12k deductible.....Gotta love and thank Obamacare!!!! 120% increase in monthly premium and 20% increase in deductible.However, If I were you.....refuse the payment for failure to render services.
     
    PIK-----unethical is allowing insurance companies and the govt to dictate and or deny care (think Justina Pelletier) that is deemed necessary by a doctor and a patient wanting it. I would argue these doctors helping our kiddos are far more reasonably priced than ones that are charging insurance companies 3 times that amount and settling on whatever they can get for poor/no service and poor health outcome.
     
    4nikki------amen......If we won't fight for our selves and our kiddos, no one else will.
     
    pik, I know and feel your frustration. However, you really need to think about the hoarding of info. It is not the docs whom are treating pandas. Our DAN Integrative pedi has been very forthcoming and thorough. But our initial peds said......You gotta get all these specialist on board....I was not on board......I just wanted to try long term abx, as we had seen improvements on it. IMHO....your demonizing the wrong people...
     
    Finally........If and when we go to a single govt payer health system.....we will be in trouble. Then, you will have limited choices and I would think many of the alternative docs will be run out of business due to taxes being too high and not enough funds by regular folk to pay for their services........unless your uber wealthy....like congress or Hollywood......
  24. Like
    WorriedDADNMOM got a reaction from MaryAW in Autoimmune Encephalities   
    Read some of it and downloaded it.......... way over my head. But get the Pandas/Pans stuff for sure.
     
    It is very interesting how we can find and get this info, but main stream docs can't or won't........shaking my head.
  25. Like
    WorriedDADNMOM got a reaction from lnn in Is it typical for PANDAS dr. to not file insurance?   
    4nikki.....I agree the short answer is yes. I really hope I am not reading the post wrong as to who your are sarcastic about......Pandas docs, Insurance co's, or whoever......If I am.....I truly am sorry, but I had to chime in.
     
    (If I am reading your post correctly-----sorry in advance if I am not) I strongly disagree with the sarcasm. It is about money to some extent........but, I would venture to say many of the Pandas docs, for many reasons, including ones you listed, are why they don't take insurance.....including limited treatments and not being able to get reimbursed for services or tests or treatments. Many, if not most give a rip about our kiddos and to a slightly lesser extent, our families. Pandas, Autism, Pans and the whole alphabet soup diagnosis, can be very difficult on a child and family.
     
    Any treatment outside the, what I call, "lame stream' medicine is "oh so bad......not standard protocol" So much is dictated by the govt thru regulation, the CDC, AMA, AAP and then Medicare. We are slowly being corralled into a single payer system with "standard treatments" where we won't have any choice whatsoever on varying treatments or alternative/natural medicines. The un-Holy alliance with Big Govt, Big Pharma, AMA,AAP ect will limit and hurt the ones that need the most intervention.
     
    I tried with regular docs with my Pandas/Pans kiddos to try and get help. We were desperate, as we had behaviors, tics, movements, neurological stuff, psychological stuff.......the whole gamut.
     
    I refused to pay two bills where I got jack**** out of the visits and got no help.......whatsoever.......just a "put her on an SSRI" from some young punk Pedi that did not know "jack****.
     
    But I went to a DAN/Integrative doc before he became a"Leading Pandas Doc" and spent 4 hours on our first visit, got the help we needed and have paid a ton of money for visits, abx, supplements, testing etc.......
     
    You tell me.....few hundred bucks for nothing.......VS.....15k over a few years for attentive doc and staff, treatment, help and valuable info to help manage the situation and future infections and exacerbation's. For us, there was not a price tag I could put on my daughter being happy, healthy....... all that she could be.........let alone..........my family functioning optimally.
     
    I know some on this board are not as fortunate to have the ability/resources to get to a good doc. But I had to comment that I think it is more the insurance companies and their alignment with big govt that are allowing our kiddos to fall through the cracks in our system.
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