Update on Nicholas

[abbe]

Hello,

 

Well I have been meaning to post but have been so busy keeping up with the kids and schoolwork. so Nicholas' test for Pyroulia came back at 18 I believe. Just out of normal into high. He was muscle tested by Dr.Chung who said he did in fact need more zinc. I added zinc b6 and primrose to our supps. He became the nicest child within 3 days!!!!!!!!!!!!! Much more cooperative, less angry and then tic free. He has been tic free (even had Halloween candy). We went to disney last week and after the 3rd day after dinner (chinese rest.) he had his eye tic. It was very , very bad the next day (ruined his day) it was heartbreaking. I called the rest. and the chef spoke to me and insisted that there was no msg. So either it was the rides, (lasers) the chef lied, to much soda or who knows. For now the eye tic is back and I am trying not to be sad. I was sooooooooo happy. But tommorow we are going to dr. chung. Hopefully the laser accupuncture can help it go away.

 

 

 

abbe

[faith]

abbe,

is msg one of the things you avoid? have you observed this before after chinese food or msg tht you were aware of. If you know it is one of his triggers, maybe the restaraunt doesn't ADD msg to their cooking, but some of the prepared ingredients such as sauces and other ingredients they use could still contain it.

 

Interestingly, my son's eye twitching has been on vacation since beginning of summer (but we've had other tics in its place), and I'm noticing his one eye wink slinking back in this past week too.

 

 

Faith

[abbe]

Faith

 

 

Hey,

 

I am not sure if msg is a trigger or not I just try to avoid it. The chef said they make all of their sauces and don't use msg for sure. So I don't know what the cause was I just know the reaction was severe.

 

abbe

[Chemar]

abbe

apart from the food stuff (halloween candy, HFC in soda and possible msg) the lazers/flashing etc from the rides could have contributed to the eye tic. flashing lights definitely are a trigger for my son

 

also at Disney, there may have been exposure to pesticides (their gardens and interiors are highly treated!), other guests wearing perfumes, plus the general excitement...all which can be tic triggers

 

do keep up with the B6 and zinc re the pyroluria. I recall some with pyroluria also benefit from manganese

[abbe]

Cheri,

 

thanks for your reply and I do believe it was a build up with the flashing lights and "Misc." food being a trigger for him. He tested positive for an intolerance to oranges yesterday and the sauce on his food was orange based at that dinner but Dr.Chung also said it could have been mold in the oranges etc. We did go through a ride at epcot prior to the dinner I think it was the living earth that was all the fruits and vegtables so pesticides may be it also. I am just hoping we go back to baseline soon. He is much, much better every day and isn't complaining. It was SO BAD the next day at animal kingdom he couldn't see and he even said he felt like he was going to die : that is when I told him that his tics aren't dangerous just a big pain. I read about the magnanese and forgot to bring it to Dr.chung yesterday but have been giving him alvocado everyday which it is in. thanks for your thoughts and suggestions as always it really helps when I feel that I am not in this alone...

 

 

abbe