I am No Longer Posting!

[Claire]

Hi all,

 

My son's latest Pyrolluria test came in today from Direct Health Care. It was 62.5!! <10 is normal, and 10-20 is borderline. What a major difference between labs.

 

So from this, I highly recommend that you use the Direct healthcare lab to avoid false negatives. Direct Healthcare access 847-222-9546 Remember, the test is only $40 plus overnight shipping.

 

I called their clinic advisor, and she will only give supplement recommendations to our doctor. I just talked to our DAN doctor and he has already tried to call her and is quite interested in finding out about the b6/zinc supplements (he knew about reducing oxidative stress). He was impressed by the hard data on the high % of this in autism/adhd (50%, 30% respectively).

 

It involves 'megadosing' with B6 and I would prefer to get her official recommendation, with his blessing Just in case, I am posting to FJ on braintalk, our local Pyroluria expert, if you want to hear what she says...

 

http://brain.hastypastry.net/forums/showth...3325#post263325

 

Daniel, thanks for the tics/yeast link, that is great to see! We need to read about medical successes on this, to help us feel we are on the right path. We haven't used Nystatin yet, but it is definitely a prescription drug.

 

Ok, here is the no posting part. My son told me today that he thinks my posting about him is a real invasion of his privacy, even if I am anonymous. I have never hidden this from him. I told him I kept it general, and he said it is ALL private, and his personal business. He said it affected his ability to trust me.

 

So, of course I have no choice but to honor his request. So this will be my last post. I am sorry to leave here--it has been quieter lately, but I still have been checking in daily. I wanted to 'help' others--but at this point, I don't know that I have anything new to add anyway, and mostly just repeat myself!

 

I wish you all the best, and will check in to see how you are doing. That is hard to do actually, as then I want to post back!

 

God bless you all and may all of your children (and yourselves) lead full and happy lives.

 

Claire

[Guest NancyE]

Claire,

 

Hi, it's the "original" Nancy. We're back from our trip to California and I'm catching up. I was quite shocked to see that you won't be posting anymore, but of course I understand you have to respect your son's wishes. You've done an amazing amount to help your son already and I'm sure he's on the road to a much healthier, symptom-free life. I know what a struggle it is at times, so I respect your persistance very much. Thanks also for all the help and information you've provided to the people here. You've given much valuable input and I know we all appreciate it.

 

The difference in the pyroluria test results is quite amazing. My son was just tested at Pfeiffer and I believe they use the Direct Healthcare lab, so I'm very curious to see the results. My own test was done at the Kansas lab and was a 9, so I'm considering having it re-done as well. Direct Healthcare is actually only a few miles from me!

 

Anyway, good luck with your continued efforts. I hope your son does even better very soon and has a successful year at school.

 

I'm not suggesting you go behind his back, but perhaps he may feel it's ok if you pop in once in a while if you're not commenting on him? Just to say hi? Only if you're both comfortable with it, of course.

 

Again, good luck and God bless.

 

Nancy

[Andy]

Claire, you are a stranger who helped me like a friend. Thanks for sharing all that you knew.

[Sheila]

Dear Claire,

 

You will be greatly missed by so many who have come to this site and benefitted from your helpful advice.

 

I think many of us felt as though we knew you, and we followed along as you continued to improve your son's health, somehow knowing that if anyone would keep finding answers, it would be you.

 

Thank you so much for taking time from your busy life to share with and support others in such a professional and caring manner. Your input was always very much appreciated.

 

All best wishes, Sheila

[Chemar]

Claire

I can only echo what everyone else has said, and sure hope that you will maybe be able to return again in an informal way to maybe just offer your knowledge and friendship, without reference to your son, thereby respecting his wish for privacy.

 

You have so very much to offer and many people would never have associated tics with screens if it werent for you.

 

Till you return....may the Lord bless you and your family and continue to guide you into solutions for your son.

 

Hoping you will stay in touch by email

 

Cheri

[Heather]

Claire,

 

I have been without a computer for over a week with our move and am shocked and disappointed to hear that you won't be posting but totally understand your son's wishes. Please do tell him that your postings have helped me tremendously and that my son is a happier little boy thanks to the knowledge that you have shared with me. As Chemar said, I hope that you will periodically share your friendship and knowledge without reference to your son in order to respect his wishes.

 

We have had some interesting developments over the last couple of weeks. My naturopath started my son on extra B6 and zinc without the pyroluria test. Actually she hadn't really heard of pyroluria. She said that with tics she has learned that the B6 and zinc is the final step in the process once the body is detoxed.

 

She said that even though his body is now showing in balance as far as yeast and metals go, his body has been depleted of those nutrients and he needs a boost to get him back on track. Well, within 1 day I saw a dramatic decrease in the tics (they were already minimal) and within a week they were almost gone. Now they are virtually unnoticeable and I am probably the only one who notices the small flinches every once in awhile. I say flinches because that is what they are, not really even what I would call tics and they are very infrequent. He is eating foods he hasn't eaten in months and watching TV pretty regularly and the tics aren't coming back. I am overjoyed and am hoping this will continue.

 

He is not on a megadose. He takes 25 mg. of B6 a day, 25 mg. zinc and a cal/mag combo. She said he doesn't need the megadose since we have detoxed the body first. She said the megadoses are necessary when you haven't balanced the body first to rid it of the yeast and metals. When your intestine is full of yeast you are only absorbing a small portion of your intake and thus the megadose is necessary. Anyway, this is the theory she has studied and I, for one, am certainly buying into it. My son is happy and virtually tic free, a far cry from a year ago.

 

Heather

[Guest Jean]

Claire,

 

You'll be greatly missed as you're such a great helper. I enjoy reading your post. However, I do understand your concern and respect your decision. Please do drop us few lines when the info. is not specific related to your son.

 

Heather,

 

It's good to hear that your son has been doing good with B6 and Zinc. For some reason, my son's symptoms are getting worse when he's taking B6. Maybe it's not B6 related. I'll have to monitor it closely.

 

Thanks for your sharing!

 

Jean

[Guest Guest_Jennifer]

Claire,

I too will miss your post. You have helped me so much sharing your info. about screens. Jarrod went to school last week and watched 2 thirty min. shows at school and I saw the "neck" tic reoccur that weekend. It did go away with no tv. We are experimenting more with the lcd screen. Thank you!!!!!

 

Heather or anyone,

I do not know my next step. I do not know about detox or haven't been to a doctor that does. I feel like Jarrod's mercury levels must be high also if effected by screens. Also haven't had any yeast tests done? Can ssomeone give me advice what my next step would be?

 

I live in a rural area of Alabama, I do not mind driving a distance for help but as everyone else - ddriving and then gettng no help is a bummer for you and your child.

 

Jennifer