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Everything posted by T_Anna

  1. <<What does the CBD Oil taste like? Is it a bad taste, or just "grassy," or what?>> It smells like pot, I haven't tasted it, but many people mix it with applesauce, under tongue and OJ or water. <<Putting it into capsules sounds like a good idea, but potentially time-consuming, too. So can you drop it into other things (like applesauce or on fruit and still get the benefits without having to put it in capsules or ruining the taste of the food?>> Yes, people put it into food and it works. I make a bunch of capsules at a time (14) and store in the fridge. I spoke to the company and they said it's fine. Ds15 has restrictive eating issues and takes pills easily. I feel better knowing he got the same dose each time. <<I checked out the Bluebird site, and it looks like it just comes in liquid form, with a dropper. Are there other forms of it available that anyone has used?>> They also recommend vapor pens, but I didn't want to start anything related to smoking. The only negative according to the company is that DS may not get the full dose because it goes into stomach, but so far so good. I can probably only get 30 drops in a capsule. Another good day. He texted some friends who were girls to come visit and they came. He hasn't seen any girls since last year January. Still a few obstacles. Not sleeping in his room and only showered once. T.Anna
  2. This is 100% legal and both DS's neurologist and his integrative neurologist were both so encouraging for us to try. I know that I probably sound a bit like a snake oil salesman, but something here has been shaken up! Wednesday he asked me to cut his hair, I bought clippers at target yesterday and he insisted I do it last night. He looks so handsome and he shaved and he looks human. He still has a long way to go, like sleeping in his own bed (he's sleeping on his sisters trundle now), going outside, synagogue, school, etc). But he's pushing himself and we are over the moon. Praying it continues!! T.Anna
  3. I haven't been here for a while, but wanted to share that yesterday (yes, only yesterday) we made some progress. DS15 who suffers with severe OCD, is homebound, wont bathe in a shower or change clothing voluntarily, wash hair etc. He took 5 doses of CBD Hemp Oil and yesterday and today went to the bathroom without rituals AND took a shower. For those who don't remember our story, DS fell off the cliff December 2012. Stopped attending school, functioning etc. Abx, Anti virals, steroids, 8 HD IVIGS, PEX, short trial of CellCept. He has been coming back in teeny tiny steps, but still didnt shower, leave the house, take less than 15 hours in the bathroom..... Yesterday he said he's had enough of OCD ruling his life. He has made an effort in the past 24 hours to plan out his recovery. Our last IVIG was 3/17 and there is a chance that helped. BUT, we really think it's the CBD, since he has never been this relaxed/focused. We bought it legally through Bluebird-botanicals.com it is CBD Hemp oil, I put 25 drops in a capsule and he gets it 2x a day. T.Anna Just saw I misspelled Oil, well it's just because I wanted to rush and share the news.
  4. We use her as our integrative dr. She also uses LDN. T.Anna
  5. We paid walgreens infusion $10738 for two days of HD IVIG.
  6. I had my phone consult with Dr.S-K. She was a bit put off that we started CellCept, but understood the reasoning. She recommended using low dose naltrexone (LDN) to help deactivate DS15's microglial. She said that if the highest activation is a 10 she would think that the DS's registers at 15. She also wants us to add Thisilyn (milk thistle) and Meriva (curcumin). We will wait another 3 weeks before adding the LDN (as long as Dr.T is ok with it too) and in the meantime, add the two supplements (2 pills each a day - one med at a time). T.Anna
  7. Trying to set up an appointment as we speak. Seems to also be very connected to thyroid issues. Curious to see what the recommended tx will be.
  8. <<My question to you is how? Who?>> Do you mean which doctor and how does she intend to accomplish this? It is an integrative neurologist in The Bronx, NY, Dr S-K. I have to set up an a phone call so that we can discuss her ideas, just figured I'd ask here since I don't have an appt yet : ) T.Anna
  9. Anyone know what "turning off microglial activation" means? The integrative neurologist said she is having success doing this with severe PANDAS patients. TIA, T.Anna
  10. It definitely sounds like it could be PANS. Dr. T in NJ does treat adults, not sure how successfully. Have you ever tried steroids? Antibiotics? T.Anna
  11. I thought it was puberty related too (so did he), but he may have something. He never had bed wetting issues before, I've put him on Azithromycin (we took DS15 off but I still had script+refills). Hope to talk to the doctor tomorrow. T.Anna
  12. I would also try tittering down the supplements. Our integrative doctor said the things like NAC can kick up yeast and that can drive a kid nuts, or a combo creating a folate trap etc.
  13. DS13 (non-pandas) has seemed off lately. The other night he asked me to change his sheets because "something" happened and he tested positive for strep (rapid). So we ran the full Dr.T list of blood tests on him. He has strep titers 699 and 1023 and he has very high Coxsackie (as high as 1:64). Can he be affecting his older brother with Coxsackie as well as strep? Should he be on antivirals? He's already on Axithromycin and seems much more energetic and focused. Symptoms: he thinks he has ADHD (googled a check list), he has trouble going to skews level without me lying there and he could possibly have a sniffing tic, but no OCD as far as I can tell. Does he have pandas too? T.Anna
  14. Maybe try to watch a something goofy that has humor. My son is obsessed with Monty Python, but when he laughs and we laugh, then he isnt thinking about OCD/depression. I know it"s simplistic, but maybe it'll help. Cobbie said it all so nicely. T.Anna
  15. Ds15 did not do well with omega/fish oil or Vitamin D3
  16. Illsmom, welcome. It definitely sounds like it could also Be PANDAs. I think that Dr.T has spoken a ton about PANDAS and ASD and PDD-NoS. T.Anna
  17. Thanks for you for the slides Cara!! I'm getting better at understanding the slides...ughh! Need a new hobby!!
  18. Croatianmum, sorry to hear that you haven't heard back from Dr.K. Maybe try an email with the subject "PLEASE PLEASE RESPOND!!!!!" or something like that. I'm sorry that your son is still struggling. We also did not have great success with our first two IVIGs, but steroids did help my son. How about CellCept? That's what we are trying.
  19. Pepper1, treating teens with this can be tough. My son is 15 and we have been through many treatments finally seeing some improvements after multiple IVIGs and high dose steroids. Many of the teens have additional autoimmune encephalitis illnesses. Check out the video on aealliance.org Grand Round. We are starting immunosuppressants with our son and hope it will help him become functioning again. T.Anna
  20. This might be the same Nancy whose daughter Shelby was making a documentary on PANDAS. T.Anna
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