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nicklemama

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  1. Like
    nicklemama got a reaction from SSS in Very high dopamine d1 what does this mean on cunningham?   
    That's interesting to read. My DS had high D1 on the Cunningham, along with high tubulin and CamKII. He has taken 2000 IU of Vit D for several years, at the suggestion of Dr K. I have never correlated it to any behaviors (and he had a ton of them before taking D). Now, after lyme treatment, he is doing extremely well. Still on D.
  2. Like
    nicklemama got a reaction from EAMom in Acute Onset of tics   
    You've just answered the question yourself in your post. Sudden onset, gets better with abx, a plethora of symptoms all at once. That equals PANS.
  3. Like
    nicklemama got a reaction from EAMom in who would freak?   
    I see they are planning to dig into private medical records and I would not sign. Ask them to submit their questions to you and you will authorize what you deem pertinent. The school does not need an open ended permission slip.
  4. Like
    nicklemama reacted to rowingmom in Constant Underlying Inflammation   
    "What could be the cause of my son's inflammation if he does not have an active infection? Last we tested, all his titres were back to normal."
     
    Titers of what? You have checked titers of everything?
  5. Like
    nicklemama got a reaction from MomWithOCDSon in Interview w/Dr. Swedo   
    I don't know whether to laugh or scream. I wish she knew that my son had zero cognitive behavioral therapy nor did he take anti obsessional medications (except for a trial period of 6 weeks that had horrible results) and now that he's been properly treated for all his infections, he does not have OCD. He currently does not have any tics. He went to the dentist Monday, so I'm holding my breath. He usually gets tics after a dental visit, even with the addition of clindamycin for 10 days. Whatever happened to the idea of getting rid of the trigger? Ugh. She is a psychiatrist isn't she? That probably explains her answer. Ask a neurologist, get a different answer. Ask an immunologist, get a different answer. Ask a pediatrician, get no answer, lol.
  6. Like
    nicklemama got a reaction from EAMom in periods stopped in 14-year-old girl   
    I think you should go ahead and ask the pedi for a referral. In fact, you might consider seeing a reproductive endocrinologist vs an ob/gyn. I would call and talk to an RE's office and see if they actually see teen girls with this problem. I'm not really sure if they do. I do know they see menopausal women and infertility is their bread and butter. In my mind, an ob/gyn is an expert on pregnancy in women and also does routine care.
  7. Like
    nicklemama reacted to EAMom in Fatigue   
    Fatigue is a very common symptom of Lyme and certain other tick borne diseases. My friend's dd who has Lyme/Babesia/Mycoplasma has severe fatigue. Also certain viruses can cause fatigue.
     
    I wouldn't expect fatigue to be a typical strep only PANDAS symptom. However, at the CA Symposium Swedo said that when they've done sleep studies on PANDAS kids they have a REM behavior disorder. Also, I think a sleep study is good when there is fatigue to rule out sleep apnea (also might be an indication for T/A). There are other treatments for sleep apnea if he doesn't have his tonsils.
     


  8. Like
    nicklemama got a reaction from SSS in calling all PANS/LYMES children's caretakers.   
    Very common. Our son started sleeping in our bed and it lasted two years. His behaviors were normal one minute and off the wall the next. It's a very hard disorder to understand, let alone cope with. My husband finally got on the band wagon and when he did, things were much better. Our son followed the rules when he could and did his daily chores when he could and when he couldn't they all went out the window for the sake of everyone's sanity. You'll get there. I've been at this five years. It gets better. It really does. Our lives have returned to normal and our son just got back from 5th grade camp where he spent the first three nights ever away from family. He had a wonderful time at an outdoor education center with every fifth grader in his school sleeping in a dorm full of bunk beds and being responsible for all his own stuff. Unthinkable just a year or two ago.
  9. Like
    nicklemama got a reaction from lpop in Acute Onset of tics   
    You've just answered the question yourself in your post. Sudden onset, gets better with abx, a plethora of symptoms all at once. That equals PANS.
  10. Like
    nicklemama got a reaction from momslove in WHO AM I TO BE MAKING THESE DECISIONS?!   
    You are. In my 5 years of experience with this, you are the ONLY one who absolutely has your child's best interest. You may make a few wrong turns. You turn back and take another path. It's all you can do. No one has the perfect road map to success. Go with your gut.
  11. Like
    nicklemama got a reaction from rowingmom in WHO AM I TO BE MAKING THESE DECISIONS?!   
    You are. In my 5 years of experience with this, you are the ONLY one who absolutely has your child's best interest. You may make a few wrong turns. You turn back and take another path. It's all you can do. No one has the perfect road map to success. Go with your gut.
  12. Like
    nicklemama got a reaction from SSS in Now Who, What...and Where? and how much will this cost?   
    My pediatrician was of no help. I took DS to a PANS specialist out of state and paid out of pocket. We found someone in state to help but is not an expert. She doesn't take insurance either. Its all been worth it. My son is doing very well. We had an HMO when this all started. We dumped the HMO when the next insurance election came around. Still, many PANS docs don't take insurance. I can submit the bill after I pay upfront and get 60% back after I meet the deductible. Everyone wants a doc that takes insurance. My husband finally came to the realization that it wasn't happening. I could not get prescriptions covered under the HMO but they are all covered now that I have BCBS. All the lab work is also covered under BCBS. If you can switch out of an HMO, that's my advice.
  13. Like
    nicklemama got a reaction from SSS in Lymes/PANS memeory loss and word confussion   
    I have Lyme disease. I can tell you that brain fog, memory and word recall problems are a part of lyme. I don't have bartonella, so I can't comment on that. I have had major improvement since starting abx treatment for lyme. It's been 8 months and I have significantly improved but I'm no where near back to my old self.
  14. Like
    nicklemama got a reaction from mama2alex in paralysis: entero-virus, lyme, other, both, all?   
    Guillan Barre is a complication of vaccines and specifically the flu shot.
  15. Like
    nicklemama reacted to nicklemama in paralysis: entero-virus, lyme, other, both, all?   
    Guillan Barre is a complication of vaccines and specifically the flu shot.
  16. Like
    nicklemama got a reaction from SSS in case study Valtrex cures "bipolar" child   
    Absolutely, says the mom who was told her son suddenly was bipolar w/ aspergers as a side dish. Funny how it happened so suddenly after flu mist. He was not tested for an infection for one year. Funny how it all went away after antibiotics and ivig.
  17. Like
    nicklemama got a reaction from EAMom in case study Valtrex cures "bipolar" child   
    Absolutely, says the mom who was told her son suddenly was bipolar w/ aspergers as a side dish. Funny how it happened so suddenly after flu mist. He was not tested for an infection for one year. Funny how it all went away after antibiotics and ivig.
  18. Like
    nicklemama got a reaction from EAMom in case study Valtrex cures "bipolar" child   
    Oh my, this paper has described a PANS kid.
  19. Like
    nicklemama got a reaction from rowingmom in Anyone have research linking vaccines to ASD?   
    Amysash- that was a treasure trove of citations. THANK YOU!
  20. Like
    nicklemama got a reaction from MomWithOCDSon in Update: I Need to Brag   
    Wonderful. Gives me hope for my son. He's quirky and smart and beyond his years in many ways. He endured a hellish fourth grade last year due to bullying. I just had a meeting with his teacher this year and I think we are on to an easier year. I can at least hope. Its nice to know that it can turn out well for our kids.
  21. Like
    nicklemama reacted to SSS in Desperate, need PANDAS/PANS doc with admit privileges   
    Wow, I'm so sorry!
     
    I would think at this rock bottom point, dealing with metals is not the priority.
     
    Getting her stabilized is- has she ever had a high dose IVIG? Something for inflammation/ to calm.
     
    Sending good thoughts--------
  22. 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.
  23. Like
    nicklemama reacted to MomWithOCDSon in Vaccination - a catalyst to immune supression   
    Wow. Thanks for the link and the story. I will never again blithely consent to vaccines for my DS or myself. I made that decision several years ago, but it becomes further enforced and validated by stories such as this. I continue to be appalled at the medical community that turns its collective back on this sort of experiential evidence, "clinical trials" be damned. It's absolutely maddening.
  24. Like
    nicklemama got a reaction from SSS in Doxy and tingling hands   
    Oh, its from any sun exposure. Five minutes into a car ride, my hands would be tingly and feeling like they were burning. I am certain your kids are not in a dark room 24/7. The tip of my nose turned red like Rudolph and lasted until a few weeks into minocycline. It was really embarrassing. No amount of concealer would cover it all up.
  25. Like
    nicklemama got a reaction from SSS in Doxy and tingling hands   
    Doxy does things to the skin especially skin exposed to the sun. My nose and the backs of my hands were tingling/burning. It stopped when I went on minocycline for the summer. Doxy is notorious for making you VERY sun sensitive.
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