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  1. MaryAW

    Mild to Moderate PANS?

    @Swetha Magnesium glycinate (we use Metabolic Maintenance) is also very good for tics. Take before bed to help with sleep. Regarding B12, a blood test only shows circulating B12, not intracellular - which is what matters. Our doctor says excess B12 is "peed out." My daughter called B12 her magic pill! I would not back down on that!! @Sandy50 Frequent urination was an early sign for our daughter. A lot of PANS doctors feel there is an underlying illness causing the PANS. Obviously for PANDAS, it's strep. Make sure to check for mold (RealTime urine test), Lyme and other coinfections (Igenex) and especially bartonella (Galaxy Diagnostics for this coinfection). Also check IGg levels to be sure he can fight whatever he has. There is a lot more info out there now, so read up! Three great books: Demystifying PANS/PANDAS by Dr. O'Hara, What to Do When Your Brain Gets Stuck: A Kid's Guide to Overcoming OCD, TOXIC by Dr. Nathan. All on Amazon. Two great websites: Aspire.care and Pandas Physicians Network: pandasppn.org
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  2. Designs for Health oregano oil caps are amazing! Tough on the gut - so take with a good meal.
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  3. bws1565

    Mild to Moderate PANS?

    Swetha, High blood B12 would show a functional B12 deficiency; requiring other vitamins to help the B12. They are Betaine anyhydrous (TMG), P5P, and Methyfolate. Also, most B12 shot are cyancobalmin, not methyl which might be difficult for your child to absorb. This is a very complicated topic. I would recommend the book "Could it be B12?" available on Amazon.
    1 point
  4. Atex

    Mild to Moderate PANS?

    FWIW, my daughter's tics were very much affected by immune system activity. Hers would ramp up in the days leading to a sickness, and then would completely go away once the sickness symptoms came out.
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  5. Dr K is eccentric to say the least, but he is absolutely brilliant, has been treating children with PANDAS since 1998, and watching him interact with his patients is nothing short of amazing. My son was diagnosed with PANDAS in August 2017. The doctors in our surrounding area in WAshington State did not have expertise in the treatment of PANDAS. With our son’s abrupt, scary, and intense onset of symptoms, I wanted to take him to a expert in the field. After sleepless nights reading peer reviewed journal articles and researching pediatricians, I emailed Dr K. and asked if we could skip the consultation and come directly to Oakbrook, IL for an office visit/consultation and IVIG treatment. He was amazing! While his communication style with adults is somewhat abrupt and slightly offensive at times, watching him interact with his patients is really wonderful. My son adored him. Dr. K’s prognosis and timelines were spot on. He was familiar with all of the current research, has a wealth of experience and could answer all of our questions concisely. The IVIG treatments were well organized, the staff members were compassionate and impressive , and the whole process was seamless. The follow up has been adequate: Dr K. only replies if there is something pressing or urgent (you need to write “Urgent” in the subject line,) but we have followed all of his post care instructions and the outcomes have been just as he described they would be. His emails are usually only 1 or 2 liners, but they tell you everything that you need to know. He saved our son and our family.
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  6. Well we got our culture results and there were many gram positive anaerobic bacteria found. The dr said it was consistent with strep. We are beyond thrilled that she is 100% cured and are praying that it holds. Just thought you would all be I retested in hearing some hopeful news...
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  7. Bridget it s so worth it! Yes the recovery is awful but even while in terrible pain I saw the twinkle in her eye and knew she was back. The thig you will want to ask is if the dr will culture the tonsils to see what infections may have been hiding. The second is medications. Much has changed recently when it comes to post tonsillectomy pain. They no longer give codeine as several children have died from it. The only med other than Tylenol(which does nothing!!) is oxycodone but it is risky for anyone with central sleep apnea so you will want to discuss the pain plan. They also give pain meds during surgery and you will want to kmow about those as well, even though the child will be itubabated. We participated in a sleep study at mass eye and ear. We were given a mystery medicine post op which was either Motrin or Tylenol. It could only be given every 6 hours and was a study not on pain management but bleeding post to sillectomy. These docs believe Motrin is as safe as Tylenol. I can tell you I think we had the Tylenol because the pain was horrendous. She could have had Tylenol every 4 hours but the study only allowed for every 6. As soon as the 8 th day passed and the study was over I gave her Motrin and she slept through the night for the first time. Thank goodness for the oxycodone which we reserved for the wee hours of the night when she woke thrashing in pain and med time was hours away. I also recommend you stay over night off they will allow. Its a horrendous night and its a godsend to have iv fluids as they can not swallow a thing that first night or so. My DS was a trooper and we are so happy to have her sweet self back. It was worth it even if it doesn't last. at least we know that no matter how bad either of our kids may get, this has proven to us that they are still there and WILL get better. There is always that fear in all of us that we may have seen the last of who we once knew. Now I can put that fear to rest, celebrate the good days and get through the bad.
    1 point
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