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SuzanneR last won the day on February 10 2018

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  1. Are you located in Houston? I ask because I saw you mention Katy and I live in Houston. I have a 22-year-old daughter with PANDAS. It took me 12 years to get her diagnosed. Have you heard of the Cunningham Panel? Look it up on google. That’s how we finally got a diagnosis.
  2. There are a few things to consider in this situation. First, how much GABA is he getting and when do you give it to him? Is he also on Theanine (it helps produce GABA)? Too much GABA can actually be converted back to glutamate, increasing that fight or flight response. You would see a jumpier, more anxious and fearful child in that case. You can try giving him GABA just once after dinner (and not in the morning). Second, are you doing anything to help him detox and excrete what the antibiotics are killing? If not, he likely needs kidney and liver support to start and perhaps something to help detox the brain. We use a homeopathic called Drainage Tone for brain detox. It really helps. We get it from our chiropractor or our doctor. Finally, when you start killing bacteria with the antibiotics, often yeast is released too (it hides in the cells with the bacteria and viruses). So, look for signs of a yeast flare. Perhaps treat with an anti-fungal like Nystatin or Lauricidin. Makes sure he drinks lots of water, give him epsom salt baths to help with detox, and, if you have access, a dry sauna. Hope some of these suggestions help.
  3. I've known a few kids on the spectrum that have these staring spells. My understanding is that they are a type of seizure. We called them staring seizures. No loss of consciousness. Just complete zoning out with eyes open. I am unaware of any connection to PANDAS, but I just may not be familiar enough with PANDAS issues. I recommend you consult a neurologist.
  4. I just read an article that might be of help to you. http://goodbyelyme.com/stop_bartonella_rage_ocd it talks about how Bartonella infection can result in PANS like symptoms, particularly rage, OCD behavior. It sounds like your son (and my daughter). It also talks about specific Chinese herbs that might address it. Check it out.
  5. Our daughter also did a provoked test. She experienced similar behavior while on the antibiotics and after she went off them. The antibiotics are stirring up the infection (exactly what they need to do so that the lab test finds what you need) which is making your child uncomfortable and likely hurting a bit. The need to frequently urinate is a symptom of PANS/PANDAS. He really feels like he has to urinate all the time. Our doctor recommended we add in something to help our child's brain detox during this time. It's a product called Drainage-Tone by Energetix. We also added some l-theanine for calming. Both did seem to help. For calming oils, you can try lavender, vetiver, clary sage, ylang ylang, and a blend by doTerra called Balance. You might also want to add in some citrus oils (lemon, orange, bergamot) or vanilla to help lift his mood. Finally, before we started treatment we tried using a product to help calm my child's anxieties, which had escalated along with her increased OCD symptoms. It's called TouchPoints Buzzies. They are a pair of clip on things no bigger than a watch that buzz. They help the brain produce neurotransmitters and calm the person wearing them. They have been a huge help for us. You can find them online. Good luck on your trip. We just got back from Hawaii with our daughter and it was very challenging for her. We took the Buzzies, the oils (vetiver works best for her) and her supplements and tried to give her lots of breaks in the hotel room. A written schedule helped her stay calmer. Ear plugs might help your child block out the noise of the park. Hope all this helps.
  6. My 20-year-old daughter with autism and PANS/PANDAS has, over the last few years, shifted her I nterests back to things she enjoyed as a toddler and young child. She has a renewed interest in some of the shows she watched as a younger child, like Sesame Street or the Backyardigans. Lately she has also become interested in reading the Big Red Barn, a book we read to her often when she was about 3-6 years old. At the same time, we have seen her OCD symptoms worsen and her anxieties increase. Could it somehow be linked to a PANDAS flare? She also has Lyme, which we started treating last week with Suprax. That initially caused even higher anxiety as the infections were stirred up by the antibiotic. Has anyone seen this happen in their own children? Any thoughts people share would be very appreciated.
  7. I'm not familiar with PANDAS Hope for Healing but I'm intrigued. I've just started using essential oils and have been very impressed with the results. I would consider using them in conjunction with other treatments.
  8. You shouldn't treat the MTHFR mutation without knowledge of other genetic mutations that also affect the pathway. You need to get a complete genetic test done (23andMe), submit the raw data to gene interpretation site (I've used LiveWello but there are other that people have recommended), then work with a doctor who's experienced in interpreting and treating the mutations.
  9. I agree that she should investigate the possibility of PANS. In the meantime, though, check out a product called Buzzies. My 20-year-old has PANS which we are just beginning to treat. Until the treatment starts to help, I am using a bilateral stimulation device called Buzzies. They are two small devices that can be worn on wrists or tucked in pockets that vibrate in alternating cycles. They have significantly reduced my daughter's anxieties. She wears them during the morning while preparing to leave the house (about 40 minutes) then removes them. Morning have gone from being full of stress, stomach pain and tears to calm and easy. The devices are $239 for a pair. FYI: I don't work for Buzzies. I have just discovered them and found them to be a lifesaver for us.
  10. I figured how to message. Sent you a private message with a name and contact info for you.
  11. I have a name for you but I'm not sure of the rules of the forum. Can I post the practitioner'S name or do I have to message privately. And how do I send a private message. Sorry--I'm fairly new here too.
  12. I think both persons that replied had some good ideas. A gap year focusing on health could be a good choice as would keeping him local and taking a few community college classes to get his GPA up. I'm going to throw out something else, too. His difficulties sound very similar to kids with autism. Now I'm NOT saying he has that but I'm thinking that a school for neurological differences or autism would be very well equipped to teach executive function skills and prepare him for college some of the schools will have what's called transition programs for students who have finished high school. These programs may be able to prepare him for college. Finally, when he's ready, there are colleges with program support for students with learning differences, anxiety, autism. Arizona comes to mind. But, in the end, I say trust your gut and keep him home for a year. Good luck.
  13. I would also like the list of Southern California docs mentioned. Do you know if any of them treat adults (my child is 19)?
  14. I just joined and am also looking for a PANS doctor for my 19-year-old who just received her positive Cunningham Panel results. I've suspected PANS/PANDAS since she was about 8 but could never get confirmation and a diagnosis. We live in Houston but are willing to travel. Dr. Shreenath Doctor wouldn't take her on as a patient (no reason given). I know two people who travel to see Amy Smith in CA and speak very highly of her. I would be happy to work with her but my husband wants me to keep searching to make sure I find the best person possible. Being near Boston, West Hartford, Philadelphia, Los Angeles, or Philadelphia a bonus since we have people we an stay with there. Suggestions please. Oh, and they need to be willing to treat 19-year-old who also has Lyme. No problem, right?
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