Jump to content
ACN Latitudes Forums

Recommended Posts

Its been a bit since I have posted on here but wanted to give an update. Last I posted we were experimenting with a steroid burst which was highly effective but not sustainable. Recently I heard of something called DAO. Its Diamine Oxidase and is an enzyme that helps the body process histamine.

 

My son has always shown increased tics after eating, going outside, exercise, stress, excitement and infection (of course). We have been infection free for a while now. Titres for all the major infectious triggers are all normal for him. His gut dysbiosis is now in check. But we still struggled with motor tics. Vocals resolved after his gut was healed. Motors remained and were severe at times.

 

I thought about the increase in tics after things like eating and exercise and knew that my son's issues were inflammation related but one day it clicked that the inflammation must be due to histamine.

 

So I started him on the Histame (DAO), 2x a day right before breakfast and dinner. its been a little over a month and 95% of his motor tics are gone. The one that is left is a finger wiggle which is not noticeable at all.

 

No other PANS symptoms to mention since those had resolved with diet changes and the addition of supplements.

 

I just wanted to mention DAO for kids with suspected mast cell activation disorder (MCAD) because this has been miracle for us.

 

 

We are still on prophylactic abx to keep strep away but have not needed any additional steroid and are planning to come off the Mobic this weekend as well. Hoping this goes well. I will report back soon. The Mobic wasn't really helping that much anyway and I don't want to keep giving it for the sake of giving it.

 

 

Hope this info can help others with suspected MCAD.

Edited by cara615
Link to post
Share on other sites

Thanks for posting this info. My daughter's main PANS/PANDAS symptoms are motor tics which have been very stubborn to get rid of. Sickness/infection seems to make them flair. We have tried antibiotics but they haven't really helped a whole lot. I am currently working on healing the gut as it seems this is where we are having the most success (althought her tics are not completely gone they have subsided).

Can I ask where you order DAO from? Also did you notice any herxing type reaction (ie increase in tics) when your son started taking this? Thanks so much.

Link to post
Share on other sites

Interesting, thanks. The LAST hold out for my DS14 is vocal tics, few motors ---actually compulsive vocal tics according to Neuro. I may check into this. Maybe it will work as well for his vocals as it did for your Ds motors. We don't have any gut issues althiugh his diet sucks. OCD in diet prevents me from doing much about this and I'm not fighting the 14 year old on diet right now. Not without some major therapy to help.

Link to post
Share on other sites

We did an OAT test to determine the level of bad bacteria and yeast in DS's gut. Once we started him on BRAVO probiotic and his gut cleared up (we retested with the OAT) all his vocal tics went away. We are not dealing with any other PANS symptoms at this point in time.

Link to post
Share on other sites

Hi Cara

 

Glad to hear your son is doing better. After reading your post, I decided to order this for my son to see if it would help with his leg tremors. According to a neuro transmitters test he does have high Histamine levels. Like you, I know this can be connected to mast cell but have not been able to have the testing done.

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...