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Everything posted by Mayzoo

  1. Well, kiddo (dd13 76lbs) started inositol on the fourth at 600mg three times a day. After one week, we bumped it up to 1200mg three times a day, and today we went up to 1800mg three times a day (only one dose so far, so I am sure the results are from the 1200mg three times a day). Today is the first day I can say our piano fingers (almost constant for months) are reduced by almost 90%. She has had a very minor reductions over the last few days. We actually started it to see if she would begin speaking again, and that has not happened yet. I am going to go up to 2400mg three times a day in another week and see if that helps any with the speaking. I do not believe I will go any higher than that, but we will have to see. That adds to up to 7.2gms a day, and adult dose is up to 18gms a day. At least I see some benefits already, so time will tell if we see any more. ETA: We both started Amazing Grass Green Superfoods (her the chocolate and me the berry). I was hoping to see an increase in energy for us both, and it seems to be helping. I will be adding broccoli sprouts powder for her in a few weeks (after reaching max on inositol for a while) to see if it helps mitigate her autism "spaciness".
  2. Glad to hear this. Thanks for the update. We are going to try inositol and see if it helps to get kiddo to talk again. Gotta try everything I guess.
  3. If you go with them, consider daily disposable (put in in the morning and throw away at night). That way, he is less likely to acquire an infection thus making things worse. I tend to believe 13 is too young for this kind of responsibility (I have worn contacts for 30 years). Hygine is paramount to good eye health in contact wearing them, and I still fudge some at my age.
  4. 1 Psychologist in Michigan: MICHIGAN Dr. David Wartel Psychologist (specializes in CBT) 248-626-1330 West Bloomfield, MI Several docs in Ohio: OHIO Dr. Cheryl Leuthaesuer Integrative Wellcare 216-696-2320 Richfield, OH Dr. Ali Carine Integrative Pediatrics 614-459-4200 Upper Arlington, OH *Dr. Allen Lewis (Leading PANDAS Physician) Integrative Pediatrician 614-245-4750 Gahanna, OH will treat more complicated cases involving PANDAS and Autism Dr. Jan Kriwinsky Pediatrician 216-831-7337 Beachwood , OH http://pandasnetwork...iders/#MICHIGAN
  5. We irregullarly use klonopin (.5mg) for blood draws, serious anxiety (ie: when I vacuum or wash her hair) and more serious "upsets" (not rages, just very emotional w/frustration). I usually give 1/2 unless it is a blood draw. It works wonderfully here. We also use one of these as first line treatment for anxiety/upsets: CBD oil, benadryl, True Calm, Sleep Relax, Japanese Knotweed w/ Kudzu, and Stress Away (essential oils).
  6. Not sure where you are, but here is a Canada Doc: CANADA http://pandascanada.wix.com/pandascanada Dr. Ayla Wilson, ND Naturopathic Medicine Vancouver, BC 604-988-1411 Email available through contact page of offices website
  7. 1 Psychologist in Michigan: MICHIGAN Dr. David Wartel Psychologist (specializes in CBT) 248-626-1330 West Bloomfield, MI Several docs in Ohio: OHIO Dr. Cheryl Leuthaesuer Integrative Wellcare 216-696-2320 Richfield, OH Dr. Ali Carine Integrative Pediatrics 614-459-4200 Upper Arlington, OH *Dr. Allen Lewis (Leading PANDAS Physician) Integrative Pediatrician 614-245-4750 Gahanna, OH will treat more complicated cases involving PANDAS and Autism Dr. Jan Kriwinsky Pediatrician 216-831-7337 Beachwood , OH http://pandasnetwork.org/researchandresources/find-help/usproviders/#MICHIGAN
  8. Before making any decision, I would have titers drawn. Our kiddo's (13yrs old) titers are over 10 times higher than they should be and she had only one shot of each at 12 and 15 months of age. We have been on medication for almost 18 months to lower two of the four titers you are speaking about because her PANDAS immuno believes they are problematic. Getting titers done, you may find you are not in need of boosters after all.
  9. My kiddo is 75lbs and on Augmentin XR 1000mg twice a day.
  10. Depends on the flavor. The natural tastes kinda grassy, the peppermint tastes like a very strong tic tac, the vanilla is strong vanilla. I mixed part of a vanilla and peppermint and that worked out best. Just as they are, kiddo prefers the natural probably because it is not as strong, but she also does not have taste sensory issues.
  11. Has she seen an ENT since the inflammation in tubes dx? I would think they would be best at resolving this. I cannot read this for relevance now, but here is a google search for strep in Eustachian tubes + treatment: https://www.google.com/search?newwindow=1&biw=1600&bih=780&q=strep+in+eustachian+tubes+%2B+treatment&oq=strep+in+eustachian+tubes+%2B+treatment&gs_l=serp.3...45328.48070.0.48326.
  12. We still use it, but not as frequently since we are not in a really bad or horrible place right now. Mainly, we use it as needed for when kiddo gets upset. Trinity: I have intrusive thoughts, but have never tried CBD oil. I manage to afford things for kiddo I simply cannot rationalize for myself. What I do take for mine is Cymbalta (SSNRI) and it seems to help quite a bit. Of course, I do not have PANDAS and my brain is fully developed, so no limitations for either there.
  13. We still use it about 2-3 times a week or so. Not faithfully, but when she gets the upsets I give trying to avoid giving klonopin.
  14. According to the label, the 500mg per 2 oz Cibdex brand delivers 3mg per 2 pumps of CBD. I do not have the Bluebird bottle any longer.
  15. For others interested in pursuing this, here is a link to a site where you can download the "test" that a dog should be able to pass to show they are trained properly. If they were to become a certified service dog, I believe this is the exam they must pass along with their specific task training they are to know as well: http://www.assistancedogsinternational.org/standards/public-access-test/
  16. My child: 1. She is verbally delayed so she could not tell me this. 2. No I have OCD so for me: 1. I have an intense sense of smell, but the odor is actually there just not detectable to most people (IE I have found small/tiny natural gas leaks in several people homes, so the smell was verified, though I was usually initially told I was imagining it). Years later, most folks just believe me when I tell them I smell something odd ie mold, gas etc... Does the smell scare me? No, but they can be very bothersome to the point of distraction from other tasks ie gas, mold, animal feces/urine etc. So, I can see how a child may respond with fear since they are less likely to understand what is going on. 2. No
  17. Thankfully, our kiddo is not violent . I have done behaviour training (not professionally, but for us and friends) myself for over 23 years with great success and many compliments to our dogs. I have also task trained dogs, so training is not really an issue, but I will have check resources for this specific of task. We have trained numerous dogs to stop at the curb and not cross until they are cued. This will be just a little more complicated since it is a parking lot with no curbs. As with all training, it will involve training the dog and (owner) my kid to work together with the cues. She is bonded with this dog already and he with her. We got him just for her and her issues, so it would be ideal if I can get him to work out. Thanks for the link . I will peruse it and make sure he is in complete compliance prior to "graduating" him. He has a tag already that says he is in training and I won't be taking into anywhere until his basic training is done. He already sits to receive his food, sits and waits for a cue to go in and out the door, and knows "high five" LOL. He is mostly house trained now and we are working on stay, down,lay down and we just need to put a bit of fine tuning on his leash training. He came to us with no training at all, not even sit, and the house training he had must have involved beatings because he was not house trained at all and was terrified to pee inside or outside despite my praising him for outside. He has come a long way in 3.5 weeks and is happy/eager to learn and please us. Really, it has actually been less than 3 weeks of training because he was neutered prior to us picking him up and I did not start work with him until I was certain he was no longer in pain.
  18. Oh, doing more research now. Thank you for the heads up and the motivation to keep researching. Apparently, the first sites I visited did not have all the right data. If the disability is not obvious, a business may ask two questions: To determine if an animal is a service animal, a public entity or a private business may ask two questions: 1) Is this animal required because of a disability? 2) What work or task has this animal been trained to perform? These inquiries may not be made if the need for the service animal is obvious (e.g., the dog is guiding an individual who is blind or is pulling a person’s wheelchair.) Additionally this applies: A public entity or private business may not ask about the nature or extent of an individual’s disability. It also may not require documentation, such as proof that the animal has been certified, trained or licensed as a service animal, or require the animal to wear an identifying vest. http://www.adapacific.org/ada/info/serviceAnimals.php ETA: Mario is now "officially" a service dog in training. I printed out the ADA service animal fact sheet and will keep a copy in my car. I had already printed out and laminated a tag for his collar and his harness from an example on the web in case the doc wrote the script, but now I have attached them. I will make an appt to have a sit down meeting with our local grocery store manager to inform them and ask about a few preferences they may have. I know I do not have to, but I live in a tiny town and everyone knows me and my kiddo so no issues expected there.
  19. Interesting. I thought service dogs had to be certified through passing a state approved behaviour/task test. This would be fabulous. We adopted him (pound) just for her and her anxiety/emotional state and to sleep with her to aide her well being at night, but he is definitely trainable. I may leave him as an emotional support dog for now and begin task training him a few things for her. I have task trained dogs before and have no major difficulties with that. 1, She simply will not look both ways before crossing a parking lot or be observant in a parking lot, so that would be a biggie for me if I could figure that one out. 2. She tries to run (anywhere quieter) when she hears a train, so if he could help with that would be great, but he is only 8.4 lbs, so he cannot use brute strength to stop her running, so I could never "count" on that. There are other things he help could with, but I will have to think about it. I may come and post them here for my permanent reference Here is a picture of "big" guy. This was before I could bathe him from his surgery and 3 weeks stay in the pound. He is sleek and shinny now:
  20. Has anyone gotten their kiddo either of these two types of dogs? We adopted a dog a few weeks ago and he and kiddo have clicked really well. I am seeing if her doc will write the script for an emotional support dog.
  21. No. Her immuno has always replied he is not worried about kidney function even though I am. I am the one who does the reagent strip tests (but have given him the results), so I will log several of those, research more and likely make an appt with a nephrologist.
  22. So far as I know, mono and EBV (Epstein Barr Virus) are the same. My kiddo has been EBV positive for a few years and we are trying to reduce her titers and symptoms with either herbal EBV medicines (Buhner's protocol) or traditional anti-virals (kinda alternating). We have been at it for a year and her numbers were so high we have still not gotten below the "> 600" value.
  23. We have several markers out of whack in relation to kidneys, so I am glad you bumped this. Her IgA is low, she has protein and blood in the urine virtually every test, her Creatine and/or bun are sometimes high and her lactic acid is very high. More research, both "yea" sarcastically, and "yea" realistically if this is another piece to our puzzle we can resolve.
  24. The great balancing act of this disorder is discerning what behaviours are within the control of our kids, and which ones are not. If the behaviour is not within their control (motor/vocal tics ect) then discipline is of no value. My kiddo is older (13) and has never been aggressive, but I take away her ipad time or send her to her room (electronic free zone) when she refuses to obey, or throws things. We are balancing many supplements and abx/anti-viral treatments that help with most of the behaviour issues. For us, anxiety (born of inflammation) is our greatest enemy.
  25. First, I would have DS and DD retested to see if the strep cleared. My kiddo was positive for 60 straight days while on abx when we first started down this road. Additionally, amoxicillin is not well known for clearing strep. It does sometimes, but often it does not. My kiddos doc did not want to retest my kiddo after the first round of abx, but reluctantly did at my insistance and surprise (only to them) she was still positive. If your doc refuses to retest, I would buy the tests on Amazon and do the test myself if I were you.
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