Ashly

We did both. ASO as well as swab. Both were negative.

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.

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?

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.

Thanks Sheila. Hoping to try NAC soon. Will keep you all posted on how it went.

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

I didn't yet as I felt I didn't have enough knowledge to go ahead in terms of what it will assess specifically and how exactly it will be useful.

Thanks Chemar. I have not tried it yet - not sure of what it is for other than it works at a cellular level. The issue is the naturopath we work with doesn't have much experience with kids so I am kind of wary of trying things as such on my 6 year old. Didn't try the probiotic either they suggested because one of the folks on one of the groups said streptococcus faeclis strain to be avoided. My sister said curd / yoghurt best probiotic - but it does not agree with him and causes him cold/cough. So I am just sitting on the fence.

Hi all Have been consulting with a naturopath and she has recommended coenzyme Q10 for improving digestive health and energy for my six year old son. Anybody has used it before and has it helped in digestive or any other areas? Please do let me know....His stools tend to be not well formed and loose. Sometimes he goes twice in a day and sometimes once in two days more or less on similar diet. Thx so much, Ashly

Hi there so did you stop it altogether or just reduced the dosage? Great to know that things took a turn for better !!!

Anyone else who tried this and found help with Vo/Mo tics and OCD/ ADHD

Hi there, does anyone have any experience similar to what we faced? What about Guanfacine? Any idea if it will make the OCD worse?

@Chemar Thanks so much for writing in and your kind words. I will go through all this information..our basic struggle now is to find someone who can guide us on the supplements and and dosage on an ongoing basis. If not to be used right away, but as and when we need them. Can't seem to find anyone here in India who has any experience with all of the things you have mentioned. Any idea if anyone else from India has had any success finding relevant practitioners? Any recommendations on whom we could approach in the US who would be open for consulting remotely? Any pointers would help a lot. We are hoping to talk to Judy Converse but any other reco that's more narrowly for TS? Lastly, as I mentioned before, DS is not deficient in magnesium - do we supplement regardless? I will circle back with any specific questions on supplements once I understand them more fully. Thx so much again! Ashly

Thanks so much for your inputs. Is the test for mycoplasma pneumoniae called something specific? Or do we just ask for testing for mycoplasma pneumoniae? Also, he had it mid May and the onset/ exacerbation was not until Sept - you think the infection could go back a few months like that. Would really appreciate your thoughts! Thanks again!

Dear friends I wanted to check if clonidine can make OCD symptoms worse? Our son 6 yr old had an acute onset of tics and not knowing what to do we went ahead with .5 mg clonidine at night for 10 days. During this time his OCD symptoms and nightmares worsened quite a bit. If I look back there were some before the acute onset as well. We stopped clonidine. Symptoms reduced although tics came back. We followed up with sessions with psychologist as well. Anybody else seen any connection like this? Thx much, Ashly

Hi there Our paediatric nurologist has suggested Antibasal Ganglia Antibodies test for out DS who is 6 years old. His strep throat culture and ASO came negative. However he had a sudden onset of tics and OCD ( at least I feel it was sudden) in Sept 18. He has always had severe cough cold and viral infection issues. He also had a pneumonia in May 2018 and was treated with antibiotics biotics. He also had cough and cold going when the bout happened and when first time we noticed tics and OCD symptoms ( mainly intrusive thoughts - fear of witches, over apologizing) etc. in Sept 18. Do you think it's worth doing this test - has anyone else done it ? Thanks a ton Ashly

Sorry to be so impatient, but any inputs at all on these pointers? Would greatly appreciate...thanks so much!

Has anyone found this effective? Has it really helped with motor and vocal?

Please do help with your suggestions - especially the seasoned members of the group. Really looking for advice to find some direction in this tough journey. Thanks much!

Hi All I am requesting advice from anyone who can offer their inputs - we are from India. This forum has been the only ray of hope in the most difficult times that we have endured last 6 months. I am grateful for this forum and reaching out for help. Our 6 year old son has been diagnosed with tourette's last September (2018). I had a few questions but some context before. Currently he has a body jerking tic - and his speech/ sound when the jerks come, gets uttered in the same rhythm. A few times I have found him to repeat my sentences in the same jerky fashion. This typically happens after a bowel movement and/ or when he uses bathroom. Not everytime but will suddenly happen few times a day - and not happen next few days. Has infrequent eye rolls. ( He underwent a partial circumscion in July ( was having difficulty passing urine due to small opening) and had Pneumonia in May and had his tonsils and adenoids removed in Jan all in 2018) also had acute onset of OCD and I am also seeing some hyper behaviour with irritability and temper issues. Strep oral swab and ASO came negative. We have had a few sessions with psychologists and I have also done dietary changes to the extent possible - mainly removing preservatives and Colors, cut down on Sugar and add a lot of fresh food rich of protein, minerals etc. Have stopped milk but still use cottage cheese and while have not stopped wheat fully, increased other whole grains. Also gave him cal mag d3 supplement for 2 months as D3 was low. Clonidine was started because his jerks started and went up out of the blue - but was stopped after night terrors and incrases in intrusive thoughts ( excessive apologizing, fear of witches etc.). He was born pre term ( 32 nd week 1.95 kg) 1. Our son has magnesium within the range ( blood test was done). Can I still give magnesium supplement? I understand that the therapeutic doses can be larger even though there is no deficiency. Can anyone please shed some light on this. 2. Can anyone recommend a naturopath/functional medicine doctor in the US or India whom we can consult in terms of supplements like NAC, Taurine, Inositol etc. One name that I researched was Judy Converse - but any other recommendations would be very very helpful. 3. Has anyone tried Ayurvedic treatment for tics/ OCD ( Ashwagandha, Brahmi ) etc Does it help? 4. I had ordered Kids B Complex but it has L - Theanine 25 mg per tab/ serving. Will it increase tics? Has anyone else tried it? What dosage? 5. How do you all prepare yourselves for th daily uncertainty? When suddenly tics / OCD gets worse especially during travel ? How do you plan life and travel not knowing what's in store? How do you manage diet when traveling? Thanks in advance for your patience and advice. Ashly