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I had a naturopathic MD tell me to take my kids off dairy at 2 years old. I couldn't do it. They were horrific eaters and needed calories so I used dairy as a crutch to get calories in them. They got many ear infections until we got them both tubes. I should have tried harder back then to get rid of dairy.

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Cara you recently posted that your child was doing well and then you tried a vitamin E cream and the tics came back again so it really seems to me that perhaps there was a trigger there.   I agree

Thanks logismum!! We are doing it! 48 hrs + dairy free and I think we have found another piece to the puzzle. Tics are down again today, even more than yesterday. Whew. I am finally breathing.

Don't feel bad Cara we do the best we can with the knowledge we have at the time.

 

I did the same for my son in fact i was told by our community health to give my son more and more milk and bread to bring his weight up. He has had so many ear/throat infections over the years.

 

Since going dairy free for most of this year not only has he not had any ear infections since end of last year he hasn't been sick at all apart from a bit of a snotty nose because it's our winter at the moment! Every other year he would have been so sick all the time. The clean eating and gluten/dairy/colour and everything else free has just been amazing for us.

 

Keep going :)

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Cara

you recently posted that your child was doing well and then you tried a vitamin E cream and the tics came back again so it really seems to me that perhaps there was a trigger there.

 

I agree you do need to try to find relief, but honestly, going to a state that has legal MM and giving it to a 5 year old without knowing if that could trigger serious consequences is imho not a very wise thing to do!!!! Never mind the legal implications. You could have your son removed from your custody!! It is one thing to do this under legal doctor supervision, but please think of the serious consequences otherwise!

 

Perhaps discuss the marinol with your doctor first as there have been other reports here on its benefits.

 

I realize you get upset when your son is ticcing ....but you have also reported a number of times of great improvement, most recently when you were on vacation .....so please don't let a waxing (maybe triggered by that vit E cream) cause you to do something you may greatly regret.

 

I still don't know if you have investigated any possible infection connection to your son's tics? but if you have not, you really should try to see a PANS literate doctor and check!

Just noticed chemar's mentioning that your son had improvement when you were on vacation. That would make me wonder if there was something in the environment at home, and the first thing that comes to my mind is mold. We certainly had it, and didn't know. Also, is there someone around him who is sick...strep, mycoP, etc....that might be triggering him?

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No mold, no sickness. Actually he improved while at home and gradually got worse on vacation. Once we came back it was another week before he was severe again. I took him off dairy on Friday and things are so much better. I'm just praying that we are finally on to something here.

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He does have mollyscum right now though which is a skin virus. Not much we can do to treat it. It has to run its course. I guess his immune system is not working as well as it should be. I plan to do more blood work to rule out PANS but for now, diet is the main thing we are working on because if he is having inflammatory reactions to the good he eats, his immune system will be compromised anyway.

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No mold, no sickness. Actually he improved while at home and gradually got worse on vacation. Once we came back it was another week before he was severe again. I took him off dairy on Friday and things are so much better. I'm just praying that we are finally on to something here.

 

I am confused...I thought in this thread you mentioned that things were much improved while you were away for 2 weeks in New York? perhaps I misread it? http://www.latitudes.org/forums/index.php?showtopic=20940&hl=

 

Also re not being sick...you mentioned above

He does have mollyscum right now though which is a skin virus.

 

A virus can trigger symptoms in a PANS patient as far as I know... It is my understanding that anything that impacts the immune system can cause the symptoms (eg the tics) to ramp up if the condition is PANS....

 

Before just doing more random bloodwork, do look into that Cunningham test info I linked for you earlier.

 

Really pleased that you are seeing improvements though with the dairy elimination and hoping that this may well be a key to understanding why he has the tics, and that the dietary modifications will bring lasting relief.

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Chemar, this is how it went. After a week on the GSE we saw great improvement in his tics. This was 4 days before our trip to NY. This improvement remained for the 1st week of the trip but slowly and very gradually started reversing during the 2nd week. But even still, it was tolerable while in NY. Once we got back the reversing trend continued with tics increasing in frequency for a week until I pulled dairy.

 

I will look into the Cunningham test. My only issue is with how they treat PANS which is abx right? Wouldn't that just increase yeast and dysbiosis in an already compromised child?

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Many on the PANS forum use natural abx like Olive Leaf Extract, Coconut Oil and/or a supplement made from its lauric acid = Monolaurin, oregano oil and others.

 

Remember that PANS symptoms are caused by inflammatory responses in the brain to the infectious agent (it is more complicated than that but that is an essential issue to treat) and so the treatments focus on eliminating the infection as well as reducing the inflammation. In many cases there is also an auto-immune component that needs to be addressed. Some use IVIG or PEX as treatment and steroids are also used....but if there is any possibility of TS, one needs to try to avoid steroids as they are contra-indicated in TS.

 

That is why it is really best to have PANS/PANDAS evaluation done by a physician who is experienced with it, as many conventional doctors are way behind the curve of knowledge there. The Cunningham test is one of the most accurate ways to initially detect a possible PANS case.

 

I am not saying your child has PANS, but it is really always worth at least checking imho

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Well my physician is a PANS friendly physician so I will ask her about the Cunningham test. Will try to get that done. What does it say that he has had improvement while having the virus by removing dairy?

 

He has had the molluscum for about a month now and we have had 2 periods of improvement (one before and partly during my NY trip and now the past 3 days....

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If someone has a dairy sensitivity then that can also cause inflammatory issues which would be a general trigger.

 

Remember that just because someone has PANS (or TS or whatever other condition) does not mean that one should not also check for food and environmental allergies/sensitivities etc....these things are not mutually exclusive.

 

But especially in such a young child, making sure you are investigating every avenue is so worthwhile as the longer these issues are left untreated, the worse they can become, and often the more drastic the treatment needed. Whereas catching things early on can often mean you can treat more "naturally" and effectively.

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