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nicklemama

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  1. Like
    nicklemama reacted to Dedee in New to this - bloodwork back for son - please help if you can   
    A psychiatrist should not be allowed to read labs of a child with infection and immune issues unless they have been trained by another specialist. You should immediately switch Doctors and find a LLMD or a PANS specialist. Do not waste your time with anyone else.
     
    Dedee
  2. Like
    nicklemama reacted to riffleshell in New to this - bloodwork back for son - please help if you can   
    Yes. One simple place to start: An ASO of 859 is far, far higher than normal for a child that has not had a strep infection since 2011. I say "simple" because any decent pediatrician (even one who is not a PANDAS expert) ought to raise an eyebrow at that. You might be able to get someone to give you some antibiotics based on that number alone.
     
    Good luck!
  3. Like
    nicklemama reacted to MaryAW in No regression ever with OCD - Time for real help   
    Instead of trying to manage this yourself, why don't you go to a PANS/PANDAS doctor? Remember a PANS child will not necessarily test positive for strep. My DD never has.
     
    Here is a link to a thread from this forum of recommended doctors:
     
    http://latitudes.org/forums/index.php?showtopic=5023
     
    Here is a link to PANDAS Network's list:
     
    http://pandasnetwork.org/resources/providers/provider-list/
  4. Like
    nicklemama reacted to SSS in Dr. T in Ramsey - everybody must read   
    We pay for our healthcare in this country (US).
     
    My husband works for the largest US company, we pay a large chunk out of his check every month for PPO coverage, start every year with a new $2,500 cash deductible, which is usually paid by mid-February since everything including prescriptions is full price until $2,500 is paid, AND THEN,
     
    we only get 80% of every insurance approved Dr. appointment/hospital stay covered.
    80%! Last year it was 90%, now 80%.
     
    Took dd9 to a leading neurologist in March, who I spoke to for no more than 15 minutes, who said:
    She has PANDAS. I can't help you.
     
    He billed our insurance company I don't know what, but I got my 20% bill for around $80.
    So, $80. bill, after my monthly fee, $2,500 deductible, for a 15 minute conversation of:
    Can't help, bye-bye.
     
    So you see Pik, welcome to American healthcare 2014.
    It is what it is.
  5. Like
    nicklemama got a reaction from BeeRae22 in Dr. T in Ramsey - everybody must read   
    You may feel doctors charges are outrageous and unethical but in this country doctors can charge what they like. In my mind, $400 for an hours service from a doctor who doesn't take insurance and has special training is worth more than paying a pediatrician who takes insurance $150 (less what insurance covers) for 15 minutes and getting nowhere because they have zero knowledge of PANDAS.
     
    I understand your frustration but blasting a doctor because you disagree with their charges doesn't get you very far. We do not see Dr T but we do see another doctor locally who does not take insurance. Most of us are in that boat.
  6. Like
    nicklemama got a reaction from SSS in Dr. T in Ramsey - everybody must read   
    You may feel doctors charges are outrageous and unethical but in this country doctors can charge what they like. In my mind, $400 for an hours service from a doctor who doesn't take insurance and has special training is worth more than paying a pediatrician who takes insurance $150 (less what insurance covers) for 15 minutes and getting nowhere because they have zero knowledge of PANDAS.
     
    I understand your frustration but blasting a doctor because you disagree with their charges doesn't get you very far. We do not see Dr T but we do see another doctor locally who does not take insurance. Most of us are in that boat.
  7. Like
    nicklemama got a reaction from MomWithOCDSon in Stained Teeth   
    THIS WORKS!!!!!!
     
    Just tried the following on DS's teeth. They had already yellowed and had brown stains on his front permanent teeth since his cleaning in early May. This weekend a little girl told him his teeth looked like "that guy on A Christmas Carol that has yellow teeth". He was upset by it. I just mixed this solution up. I brushed using his tooth brush. When there was still some brown staining on the two upper front teeth, I used a piece of gauze wrapped around my finger. All stains gone!!!!!
     
    From Wiki, as noted above:
     
    Brush your teeth with a hydrogen peroxide and baking soda paste once a week. •Pour 2 teaspoons (10 milliliters) of hydrogen peroxide into 3 teaspoons (15 milliliters) of baking soda. Mix these together until a paste forms. Play with these measurements until you find a consistency that you like. The paste should be similar in thickness to toothpaste.
    •Add a tiny bit of mint toothpaste to your homemade paste to give it a fresh flavor. You can also add a drop of peppermint extract.
    •Mix in a dash of salt. The salt will exfoliate your teeth as you brush.
    •Dollop the paste mixture onto your toothbrush.
    •Brush the paste onto your teeth in small, circular motions. Once all teeth are covered, let the mixture sit on your teeth for 2 minutes.
    •Rinse the solution off of your teeth by swishing with water from the bathroom sink.
    •Brush your teeth with toothpaste to rid your mouth of any remnants of the hydrogen peroxide mixture.
  8. Like
    nicklemama got a reaction from 1tiredmama in Bullseye rash questions--help!   
    Always treat a bullseye rash. 30 days minimum.
  9. Like
    nicklemama got a reaction from JenniferG in Cunningham Panel Results   
    I'm not sure why the interpretation was left off unless it will come with the D2. Based on the results you posted, you are going to get a likely interpretation based on the high D2 and CamK.
  10. Like
    nicklemama got a reaction from rowingmom in Pans and started with Integrative MD~ seeking feedback   
    I would recommend finding an ILADS trained LLMD. You should have some choices in your area. I have been on doxy for approximately 9 weeks now. I have a red rash on my neck that is itching and driving me crazy. The tip of my nose looks like Rudolph too. Saw my LLMD today and i'm switchng to minocycline for the summer ( I have Lyme, as well as my 10 yr old PANS son).
     
    Did I read it correctly that a doctor has diagnosed your 12 yr old daughter with chronic fatigue syndrome? I'm no doctor but I find it incredible that a doctor would diagnose chronic fatigue in a child and not try to get to the bottom of it. I wasn't aware children could be diagnosed with CFS. I was diagnosed with rheumatoid arthtritis, chronic fatigue and fibromyalgia. My fatigue is getting much better with Lyme treatment and my joint pain is nearly gone.
     
    My son was treated for PANS for 2.5 years and he did get better but he did not get really well until appropriate Lyme treatment. I have been treated for Lyme for 9 weeks and I can't begin to tell you how much better I feel. If your child is not getting better with PANS treatment by some of the best PANS minds, move to Lyme treatment. Her Igenex is highly suspicious looking.
  11. Like
    nicklemama reacted to beeskneesmommy in Chicken Pox Vaccine   
    I do not think that there is enough data regarding one vs the other with our PANDAS/PANS kids. However, I would opt to skip the vax. I would rather my son actually catch the chick pox and gets it over with. There is not enough data regarding the longevity of the vax efficacy. If an adult male catches it, it is serious and can render him sterile. In healthy kids, it is an uncomfortable and unpleasant illness most of the time and once it is done, it is done. I was born in '64 and Chick pox was a right of passage, in a way. I am not advocating that you send your kiddo out to catch it, and the likelihood is less due to so many kids being vaxed for it now, but I feel that even offering this vax to the general population may be a bad idea in the long run.
  12. Like
    nicklemama reacted to rowingmom in Chicken Pox Vaccine   
    Make an informed decision, do not trust your PCP to make it for you.
     
    http://articles.mercola.com/sites/articles/archive/2009/11/14/expert-pediatrician-exposes-vaccine-myths.aspx
     
    http://www.patient.co.uk/doctor/vaccines-and-immunological-products
     
    From the link directly above:
     
    Measles, mumps and rubella (MMR) and varicella-zoster vaccines should be avoided if immunity is significantly impaired (see 'Immunodeficiency and live vaccines', below).

    Immunodeficiency and live vaccines
    Live vaccines should not be given to:[2]
    Patients actively being treated for malignancy (chemotherapy, generalised radiotherapy). Patients within six months of such treatment. Transplant patients on immunosuppressive drugs. Patients within six months of bone marrow transplant. Within three months of adults receiving 40 mg/day of prednisolone for more than a week. Within three months of children receiving certain doses of prednisolone (2 mg/kg/day for one week or 1 mg/kg/day for one month). When steroids and immunosuppressive drugs are being given together (the specialist in charge should be consulted). Patients with impaired cell-mediated immunity or immunodeficiency syndromes such as DiGeorge's syndrome and severe combined immunodeficiency syndrome.  
     
    http://articles.mercola.com/sites/articles/archive/2014/04/26/vaccines-adverse-reaction.aspx
     
     
    From the link directly above:
     
    Overvaccination not only exposes people to potentially dangerous adverse reactions, but it may damage the health of the greater community. Take varicella zoster (chickenpox), for example. According to Dr. Humphries:12

    "Prior to the universal varicella vaccination program, 95 percent of adults experienced natural chickenpox (usually as school aged children)—these cases were usually benign and resulted in long term immunity. This high percentage of individuals having long term immunity has been compromised by mass vaccination of children, which provides at best 70 to 90 percent immunity that is temporary and of unknown duration—shifting chickenpox to a more vulnerable adult population where chickenpox carries 20 times more risk of death and 15 times more risk of hospitalization compared to children. Add to this the adverse effects of both the chickenpox and shingles vaccines, as well as the potential for increased risk of shingles for an estimated 30 to 50 years among adults."
    A young child with active chickenpox, who comes into contact with an adult who had chickenpox as a child, is giving the adult a natural "booster" that will not cause symptoms but will strengthen the adult's immunity to the disease. But since the introduction of the chickenpox vaccine in 1995 in the US, followed by chickenpox vaccine mandates in the states, there are fewer natural boosters for the adult population. Now, there is a shingles (herpes zoster) epidemic among adults – and Merck is the sole producer of both chickenpox and shingles vaccine in the US!
  13. Like
    nicklemama reacted to Mayzoo in Cannaboid OIl-RESULTS!   
    The 50-50 natural/peppermint mix was a success this morning. She preferred it over the peppermint straight.
     
    She took a shower yesterday and was upset at the start, but settled down during the shower. She has not taken a shower without being upset all the way through and for an hour or more after in as long as I can remember. I have had to force her to take showers for about a year now.
  14. Like
    nicklemama reacted to pr40 in Tell me I'm wrong...   
    why resists PANS diagnosis? symptoms fit, genes also. such diagnosis offers some hope and you know how do deal with it.
    what would be your alternative diagnosis? bi-polar?
  15. Like
    nicklemama reacted to Dedee in Tell me I'm wrong...   
    I'm missing the part where this doesn't fit the PANS criteria. ODD, rage, high sensitivity, frequent urination, anxiety......Seriously, this fits my daughter to a T. Also, going to admit that as my third PANS child I had some denial going on as well with dd. You need to start trying to find an infectious source. I would bet something is hiding in there somewhere.
     
    Dedee
  16. Like
    nicklemama got a reaction from philamom in Cannaboid OIl-RESULTS!   
    Snake oil, hemp oil, who cares as long as it works!
  17. Like
    nicklemama reacted to SSS in Enhansa   
    My opinion (just me) I don't see Enhansa as an
    immune regulating supplement.
     
    I use it everyday, I use it as an anti- inflammatory, anti- yeast.
    I did a protocol with it some years back w/ dd, ramped up to a higher dose w/ vitamin C,
    and it pushed out some viral issues for her.
  18. Like
    nicklemama reacted to Hrosenkrantz in Request for success stories please!   
    I was unsure whether to post this to the need to vent or success stories thread.

    After an embarrassingly long period away from school because he was put on medical leave, my son started school again this past wed -- he is on day 4. Its not the same school he left for medical leave, but...im shocked and flabbgergasted by how well it is going. I set everything up for the return to school as if there will be phone calls to me and problems and...there just hasn't been. THings are going well. My son seems very happy to be there.

    I have been afraid to write this for fear that something will go wrong.

    It is a weird feeling when your day-to-day has been defined for so long by PANS-related problems and...then they seem to be fading

    (I was going to write gone but that seems too optimistic at this point).
  19. Like
    nicklemama reacted to MomWithOCDSon in Request for success stories please!   
    AmyJoy -- "The Church of Whatever Works" -- I can't claim it as original myself, so I certainly have no qualms about it making its way into the social vocabulary!
     
    Nicklemama, I believe the bow is yours?! Brava, brava!
  20. Like
    nicklemama reacted to amyjoy in Request for success stories please!   
    I love that, Nancy - The Church of Whatever Works.
    Would you mind if I use that phrase?
     
    Here is a copy of a success post I put on a different forum last week. Sharing successes is so important to keeping hope and faith in that all this nightmare can end, and will end, I believe, our children can heal.
     
    "A DOSE OF HOPE for everyone on this forum - my son who was sick for 7 years, and didn't even have his first ivig until he was nearly 15 years old- is not only better, but just received the official letter giving him a full four-year merit scholarship to his college of choice, and he is going. He is going off, by himself, because he's better now. There was no way to anticipate this. There was no possible way of knowing one year ago, or even 6 months ago, for certainty, that he could just go off to college like a normal kid. Please, no matter how awful it is, how sick your child is, how much you go into debt, how much you feel like dying at any given moment - please do not give up on your child or on yourself."
  21. Like
    nicklemama got a reaction from MaureenL in Request for success stories please!   
    I have a fear of posting this. Don't want to jinx things. After 4.5 years of dealing with this, DS, 10 has been very stable for his longest stretch. We have weathered a stomach virus, 3 colds w/ a terrible cough and a viral illness of some sort that produced a fever of 102. All this without even a blip this winter season.
     
    He had sudden onset with every listed symptom. Severe but has always managed to go and do well academically in school. IVIG twice. The big turn around has come after treatment for ehrlichia and anaplasma for the past year with augmentin and biaxin that also treated the Lyme we just got a strong positive on thru Igenex this week. He is not showing active infection but is 5 bands positive IgG.
     
    I'm not ready to say he's completely out of the woods but it's the first winter he's not flaired since this started in Oct 2009.
  22. Like
    nicklemama got a reaction from Missmom in Request for success stories please!   
    I have a fear of posting this. Don't want to jinx things. After 4.5 years of dealing with this, DS, 10 has been very stable for his longest stretch. We have weathered a stomach virus, 3 colds w/ a terrible cough and a viral illness of some sort that produced a fever of 102. All this without even a blip this winter season.
     
    He had sudden onset with every listed symptom. Severe but has always managed to go and do well academically in school. IVIG twice. The big turn around has come after treatment for ehrlichia and anaplasma for the past year with augmentin and biaxin that also treated the Lyme we just got a strong positive on thru Igenex this week. He is not showing active infection but is 5 bands positive IgG.
     
    I'm not ready to say he's completely out of the woods but it's the first winter he's not flaired since this started in Oct 2009.
  23. Like
    nicklemama got a reaction from Hrosenkrantz in Cannaboid OIl-RESULTS!   
    Snake oil, hemp oil, who cares as long as it works!
  24. Like
    nicklemama got a reaction from T_Anna in Cannaboid OIl-RESULTS!   
    Snake oil, hemp oil, who cares as long as it works!
  25. Like
    nicklemama reacted to dcmom in Need to Vent   
    mpatti-
     
    Both of my girls have pandas- so I can really relate to what you are saying.
     
    All I can say is that it gets better.
     
    First of all, there is a grieving process- there is no way around it. But you will be sad, and angry, and then you will accept ( not accept pandas, but accept that you have to deal with this). It will not be easy, will not be linear- but you will be in amuch better place.
     
    You will also learn that you, and your child are not helpless. You will treat this medically, and you will also hopefully learn psych tools. You will see your child beat this, maybe more tha once. You will find courage in their and your strength.
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