Ashly Posted October 1, 2019 Report Share Posted October 1, 2019 Hi there Out nutritionist has advised to get our son 7 years on NAC 500 mg. His intrusive thoughts are really starting to bother him and we don't want to jump to medication without trying natural stuff. I have 3 questions 1. Did it ( NAC) help any one with intrusive thoughts 2. Did it increase tics for anyone and if yes on what dosage? 3. Any other NAC side effects? 4. What dosage did you start on and at what dosage did you notice relief if any? Thanks for your patience. Desperately seeking answers for my son. Ashly Link to comment Share on other sites More sharing options...
Sheila Posted October 2, 2019 Report Share Posted October 2, 2019 Hi Ashley, Please see this article by Dr James Greenblatt, one of our advisory board members, that includes a discussion of NAC. While not addressing each of your questions, I hope it will be useful. Wishing you all the best, Sheila https://latitudes.org/key-nutrients-for-adhd-ocd-and-tics/ Link to comment Share on other sites More sharing options...
Ashly Posted October 8, 2019 Author Report Share Posted October 8, 2019 On 10/2/2019 at 8:28 PM, Sheila said: Hi Ashley, Please see this article by Dr James Greenblatt, one of our advisory board members, that includes a discussion of NAC. While not addressing each of your questions, I hope it will be useful. Wishing you all the best, Sheila https://latitudes.org/key-nutrients-for-adhd-ocd-and-tics/ Thanks Sheila. Hoping to try NAC soon. Will keep you all posted on how it went. Link to comment Share on other sites More sharing options...
MaryAngela Posted October 20, 2019 Report Share Posted October 20, 2019 @Ashly We had huge success with NAC for my DS a few years ago. We used a high dose (900mg 3x a day). This was the dose from the Yale clinical trial. It may have taken 3 weeks before we saw improvement with OCD and tics. Current MD says it’s important to use magnesium along with NAC. DS 15 is currently getting HD IVIG, but recently asked if he could start the NAC again (which we resumed last week). Link to comment Share on other sites More sharing options...
Ashly Posted October 20, 2019 Author Report Share Posted October 20, 2019 Thanks so much for sharing your experience. Did you give it along side medication or anything else ( other than magnesium?) We have started with a low dose - and will increase slowly. Link to comment Share on other sites More sharing options...
MaryAngela Posted October 20, 2019 Report Share Posted October 20, 2019 At the time we had the most success with NAC, DS had just been weaned completely from all meds due to side effects. He had been on prescription meds for 2 1/2 years, which helped OCD a bit, but not tics. The meds made him aggressive, negative, hateful, revengeful, etc. Although doctors told me it was coincidental and not from meds. He developed priapism from the meds, and finally we were told to wean him off everything. That is when he started the NAC. Within 3 weeks we had our happy, good-natured child back, after 2 1/2 years of misery. This lasted for 7 glorious months, until he experienced his most severe onset of PANS. Current MD linked this to Miralax use. If your DS has ever used Miralax, I will share the details. Link to comment Share on other sites More sharing options...
Ashly Posted October 21, 2019 Author Report Share Posted October 21, 2019 Thanks so much, we are almost thinking of trying medication. Have just started him with NAC. He has never used Miralax. His most distressing thing right now is that when he has to choose from what he wants to do and what he should do , he gets extremely angry and agitated and can't cope. For example he does not want to study but he knows he should because there is a test, he completely loses it. This can be for anything - his eyes were aching but he wanted to watch TV - that brought on the same rage. I am not even sure what is this - TS rage or oCD or something else. He is only 7. It's like he will be a different person and then snap out of it at some point. Anything I do or say in the interim does not make a difference. How much NAC you stares with and how did you increase, in what frequency? Link to comment Share on other sites More sharing options...
MaryAngela Posted October 21, 2019 Report Share Posted October 21, 2019 When we first used this in 2015, I think we worked up to the 900mg 3x daily over 3 weeks. Try doing a Google search of the Yale clinical trial. We probably followed the dosing from that, as far as what to start at. My advice if you go the medication route, is that less is more. The first time we tried Prozac it was a disaster, but had some success years later on a very low dose. Most of the antipsychotics cause aggression if the dose is too high. Be sure to document behaviors and doses. Your son’s symptoms sound like PANDAS/PANS. Have you gotten strep and mycoplasma titers done? Link to comment Share on other sites More sharing options...
Ashly Posted October 21, 2019 Author Report Share Posted October 21, 2019 We did do strep which was negative. He did contact pneumonia which was treated with antibiotics. The pneumonia was about 3.5 months before the acute onset although i feel he has had some my OCD tendencies earlier as well. Thanks so much for your advice, will reach out in case of more questions. Link to comment Share on other sites More sharing options...
Chemar Posted November 5, 2019 Report Share Posted November 5, 2019 Ashley, when you checked for strep was that titres or just a throat swab? Link to comment Share on other sites More sharing options...
Ashly Posted November 6, 2019 Author Report Share Posted November 6, 2019 We did both. ASO as well as swab. Both were negative. Link to comment Share on other sites More sharing options...
MaryAngela Posted November 6, 2019 Report Share Posted November 6, 2019 @Ashly My DS’s strep titers were normal in Spring of 2016, but Rheumatologist said to try antibiotics anyway. 6 or 7 of his tics went away completely. The 7th went away with IVIG. She said that the abx may have an anti inflammatory property or although there was no recent strep exposure, the misdirected immune response (attacking the brain) never shut off from the last strep exposure. Link to comment Share on other sites More sharing options...
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