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Everything posted by StillHopeful

  1. Thanks for the update tj21. Glad it is helping your son. Interesting that they sent you a new bottle. Keep us posted. I am hoping one day my son will take the cbd oil for his OCD.
  2. Hi T Anna - Just wondering how it is going with the CBD oil? Are you still using Bluebird and can you share your son's dose and weight? My son tried it once but hated the taste. Are you still using capsules? Thanks for sharing.
  3. Hi Keri -- I am also exploring options in regards to the mouth guard. If you are near the NY area you may be intersted in a study that Weil Cornell is doing in conjunction with a dentist in Suffern NY. If your child qualified it would be free. You might also want to find out more about PANDAS/PANS if you are looking for triggers (strep, viruses,lyme, allergies, etc...). Good luck!
  4. Hi -- I sent you a PM with our phone number. Please call us when you have a chance. Just wondering what you thought of the Dr. in VA and the Dr in MA (near you). The Dr. In VA wants a lot of money and I am worried about taking a chance. I am going to contact the dr in MD as well. There is a study being done in NYC so I am looking into that too. Also, wondering did your son's diagnosis change due to the use of the mouthguard for ex, did it lessen the vocal tics? Thanks again!
  5. Thanks for the reply BigAl. I have a lot of questions... Up to the point that the mouthpiece broke was your son ticing at all? Did he have vocal tics that diminished over time? My son has vocal tics and cursing so I am hoping it can help with that Do you see this as a "cure" or more like eyeglasses (when they are off you can not see well)? Did it help with any other symtpoms like OCD or attention issues? I am glad it is helping your son. Too bad that it broke but hopefully you are on the right track now. My son needs braces and I am hesitant to get them at this point. I sent Dr. Stacks an email but have not heard back. Maybe I will email Dr Sims as well. Thank you very much.
  6. Hi Bigal, I was just wondering if your child continues to use the mouth guard and if it is helping him with his tics? Thanks!
  7. Looks like there are multiple ways of dosing. Short courses of 5 days and then longer tapers. Thanks for your replies.
  8. Hi - I just recently started my child on a steroid burst. It is not a taper. I was wondering if you could tell me how much you used and how big your child is as a comparison. I do not know if my son has lyme and this is a concern to me. He is not on any other medication at the moment. Has been on several abx in the past that did not help much - Zith, Aug, Biaxin, Doxy. Thanks!
  9. My DS's original trigger was strep. He has not has strep in a while and his titers are with in normal range but he still has lots of anxiety, OCD and tics. The doctor says it is the myco that is causing it and that it is hard to get rid of the myco. His IgG myco numbers have gone up slightly (w/in 10%). He says the band 41 could be myco and that I may want to pursue additional lyme testing. He also said that they antibiotics that I have been using would also work against the lyme. I don't recall my son ever having walking pneumonia. Thanks Rowingmom. I am going to read that book.
  10. DS13 dx PANDAS has been IgG positive for mycoplasma and band 41 for about a year now. Just wondering what others have used to successfully eradicate it. Antibiotics, supplements, etc?? We have tried augmentin, biaxin and doxycycline. Thank you!
  11. My son didn't cooperate with the inositol and I was having trouble with increasing it up so I stopped. He also is hyper sensative to taste. What seems to be working is NAC. My 12 year old is saying and doing things that normally give him anxiety and he also likes that he has less congestion/mucus in the morning. He can get obsessed with it in the am and gags on his toothbrush sometimes. For my 15 year old, it is really taking the edge off of his night time anxiety. So far, so good. Keeping fingers crossed.
  12. Very interesting!! Love good detective work! Did 23andme give you a report re this info from 23andme or did you have to research or hire someone to decipher for you?
  13. Hi - Is this it? http://www.nysota.org/node/334
  14. Allie - Can you continue what you are doing w/ giving it in small amts? If you are not seeing any adverse reaction then I would just continue. I messed up the first time I gave the methyl B12 to my son. I gave it w/o the folate which caused the bad reaction. I have held off giving him any of the Bs until the end of the month when he is off from school so I can observe him better. I did start him on NAC which may be helping w/ anxiety/general moodiness.
  15. Allergies can provoke an auto immune response I believe. We are towards the end of an elimination diet with my son who is 15 yo. He was Gluten, Dairy, Soy, Chocolate, Peanut, egg, Pea, artificial color/flav/preserv, floride free. His behaviors did not change for the better when we eliminated everything. In fact, he started to tic more. Dr thought it was withdrawal (food addition). As we added in dairy, his anxiety has possibly gotten worse. I am taking him off dairy again and then will re-introduce it. Jury is still out. There are a lot of people that believe in GF/DF diets and do see good changes in their children both physically and behaviorally.
  16. We are using it for myco and strep. I wish it would help w my son's anxiety but it haa not so far. It helps with his tics (motor and vocal). He was originally on Augmentin and Biaxin and then the Augmentin started to make him nauseous.
  17. If you are really concerned you could call the company and see if they have any additional info. Good luck.
  18. My son has pollen allergies - weeds, grass and tree. Not sure about ragweed (should know but I don't remember) He takes Rescue Remedy in the drops and gum and it works pretty well for him. I also started to give him lemon balm. It is herbal and not made from lemons. Apparently the leaves smell like lemons which is why it is called lemon balm. I don't know much about the tea. He uses the capsules and they seem to take the edge off of his high anxiety moments so that they are more manageable.
  19. So far I have been able to sneak the insolitol into his drink but not sure how long that will last so I may have to buy either the empty or premade capsules. Not sure if he would let me dump the powder on to his tongue. Good idea though! I was told to give it 3 times a day (eventually 3 tsp total). Is that what others are doing? Would rather divided it into two doses if possible. Mayzoo, I am trying the Lemon Balm on my other son. He has a lot of anxiety that makes him very hyper esp at night when he is getting ready for bed. Only started it Thursday so I am not sure how well it is working yet. He does seem a bit more calmer overall. Less hyper, less teasing his brother .... The real test will be during the school week. MomwithOCDson - Would love to take my son off the abilify but he is doing so well w/not ticking that the psychiatrist wants to leave it alone for now. He is only on 2 mg. I will look back in my notes to see if there is a correlation between the abilify and the ocd. Hadn't thought of that. Thanks everyone for your suggestions!
  20. Hi - I am trying to make a list of natural supplements for OCD. My DS12 has finally come off of Zoloft which wasn't helping with general anxiety/school phobia and not too much with his OCD. However, since being off of it for 4 weeks I have seen an uptick in contamination OCD symptoms. I don't want to put him back on an SSRI. I started giving him inositol but he is not cooperating too much with drinking the powder mixed into his juice (even though you hardly taste it). Do you think I could put it in capsules and he could just swallow it and I don't have to mix it in liquid? We are starting very slowly w 1/4 tsp and working up to 1 tsp 3xs per day. I can try NAC next, if the inositol doesn't work out. What else is good for OCD? Anyone doing homeopathy? Right now he is on biaxin (strep,myco) and abilify. Tics are about 85% better since antibiotic started in Dec. Anxiety is high, OCD not getting better. Much thanks!
  21. Got the 400 mg cap from Vit Shoppe. I am not going to increase the buspar at this time. Kathy N - When I was looking it up it did say it may make you sleepy. I am going to give it tonight at bedtime just in case. "Several studies show that lemon balm combined with other calming herbs (such as valerian, hops, and chamomile) helps reduce anxiety and promote sleep. Few studies have examined lemon balm by itself, except for topical use. For example, in one study of people with minor sleep problems, 81% of those who took an herbal combination of valerian and lemon balm reported sleeping much better than those who took placebo. But it's not clear from this and other studies whether lemon balm or valerian (or the combination) is responsible for the result." The same is true of several studies for anxiety, which used a combination of herbs to reduce symptoms. In another double blind, placebo controlled study, 18 healthy volunteers received 2 separate single doses of a standardized lemon balm extract (300 mg and 600 mg) or placebo for 7 days. The 600 mg dose of lemon balm increased mood and significantly increased calmness and alertness. Also Interesting -- "... lemon balm oil has a high degree of antibacterial activity. In one study, lemon balm showed adequate activity against Listeria monocytogenes and Staphylococcus auerus. And a few studies have found that lemon balm may help improve cognitive function and decrease agitation in people with Alzheimer's disease."
  22. Looks like I have a lot of reading to do. Thanks!
  23. BTW I triple checked-- it is Buspar in 10 mg tabs. I have been giving him 2 am and 2 pm. I would prefer not increasing it since I would like to give more natural sups. May start antibiotic in a week or two. He has a little bit of an upset tummy so I am holding off. Thanks again for the info!
  24. Thanks Kathy and Mayzoo, I think I will try to get some tonight and use it with both of my boys. Did you see an improvement w/in a day or 2 or does it take a while? Thanks.
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