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Ashly

Please help - India

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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

 

 

 

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Hello Ashly

Sorry you have not yet had any responses, and for the struggles your son is going through.

I know you mentioned you had strep titres done, but other microbes can also be implicated in PANS, so it's beneficial that you have also posted on the PANS/PANDAS board

There is also a lot of info on our pinned threads both here on the TS/tics forum and on the PANS forum as well as the OCD forum, and  lots more articles on the website https://latitudes.org/

We found magnesium very helpful for tics Oral supplements plus transdermal by Epsom Salts baths.I have a thread from years back on what helped my son, but do remember each situation is unique so there may be issues mine had that are different from your son's https://latitudes.org/forums/topic/687-the-treatments-that-have-helped-my-son/

I will try to check back later to post more or answer any questions you may have.

My best to you.

 

 

 

 

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@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

 

 

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