Hello Everybody

[CSP]

First sorry it's been awhile, my computer has a bug.

 

I wanted to wish you all a Happy New Year and to let you know you will be remembered in my prayers during Holy Hours for the coming year.

 

Next I can not reply to all the posts I have missed but wanted to ask how Bonnie was doing? And another newcomer (forgot the name but has an 11 1/2 yo.) just to let you know I undrstand your hard days right now.

 

Short update on son. He is still doing well after the T&A and his yeast overgrowth is slowly going away. He only has a small white spot on tongue now. His training requirements for the volunteer fire dept. is going well. He pasted the Blood Borne Pathogens test, CPR, and is working on the Haz Mat Awareness. He is not cleared to ride yet but should be soon, he must train in rope knots and throw ladders. He is loving it and working hard. His heaviest obligation will be FF1 and that will take 7 months.

 

Again he is 16yo and 4 years ago he exploded with non-stop screaming. If anyone told me 4 years ago he would be doing this I never would have believed it. So to all the moms and dads who just don't know where this road is taking them, please know where you least expect to find peace from all this, it is really not that far off.

 

CP

[Chemar]

so good to hear from you CP and especially to hear the encouraging updates on your son

 

 

 

 

mine just texted me a video he made at the top of a mountain in northern Georgia! He has been there since after Christmas visiting a friend's cabin in the woods and having a great time hiking, climbing etc.

 

so there is another encouragement for all feeling despair.....10 years ago I was told my son would likely have to be institutionalized! as things were so bad. And here is is now a 20yo well adjusted young man. he told me some years back that he would never again let TS be stumbling block to him, but would use it as a stepping stone to always lead him forward and upward. he sure has done just that

[ilovedogs]

Awww, you guys brought tears to my eyes! We had a great weekend this weekend, too. Ds played in his first national tennis tournament in Tucson, AZ. Kids from all over the country were there and most were very highly ranked. He lost both his singles matches, but one of them was so close. He was out there ticcing away but it didn't stop him from playing his best. He did end up winning a doubles match, though, so it turned out to be a great win for him, too. Ds has added in some shoulder shrugging tics now along with a head nodding and a eye squeeze while he plays tennis. I swear I have no idea how he keeps the ball in play with that eye squeezing tic, but he does and it doesn't seem to bother him. His anxiety was very much in check, as well, and he only got really nervous before his first match.

 

The only supplements I brought with me were the B6, the Kavinace, and glycine. I totally forgot the magnesium. He even ate a bunch of junk food at the player parties and such, and he did really well! The best part of the whole weekend was when a stranger came up to him and told ds that he had seen some of his match. He told ds that he thought ds deserved a sportsmanship award for how composed and friendly he was on court. I also got complimented on his behavior during his matches from the other parents and one father from CA told me that he was going to use my son as an example to his son for how to act on court. I couldn't have been more proud! He may have tics, anxiety, OCD, ADD, etc but people recognize his positive personality and it really makes me proud.

 

CSP: thanks for thinking of me! I'm in the midst of blood tests and third opinions soon. I have 2 totally different opinions right now so I'm stuck in the medical vortex trying to figure everything out. Knowing my body: I'll be some sort of medical experiment with some undiagnosable problem. Honestly, the last doc I saw was just flabbergasted at some of my symptoms and she admitted that she has no answers for me but she started testing for autoimmune conditions, thyroid panels, and many other tests that I can't remember. She even admitted that I'm probably going to be on quite the adventure. I think I'll be getting a brain MRI soon to rule out a tumor, too! OH YAY....so much fun....NOT! Anyway, I'm really just in limbo and I'm just trying hard to get through each day without thinking about it all, LOL!

 

Hope everyone has a great New Year!

 

Bonnie

[CSP]

Chemar, that is so good to hear about your son. Have some land in GA by the lake near SC line, beautiful country, I bet he is having a blast. I wish I was there, it's cold here!

 

Bonnie, Bonnie, you are causing me some worry. I love the story about your son, that's so cool. You all, I have met this young man and he is a gem.

 

CP

[faith]

Next I can not reply to all the posts I have missed but wanted to ask how Bonnie was doing? And another newcomer (forgot the name but has an 11 1/2 yo.) just to let you know I undrstand your hard days right now.

 

you can't read FOUR posts! lol...... (oh and I'm doing just dandy too CP, thanks for asking! ....hope things are okay too, Bonnie, the'll figure you out soon.......

 

 

Really glad to hear all the exciting news from you guys, ......firefighter in the house?....top of a mountain you say? .... tennis pro, huh?........ beautiful.............hey!, MY son threw his socks and underwear down the laundry shoot the other day without having to be told!... ...........now THAT'S progress.......

 

Happy New Year again and continued blessings,

Faith

[CSP]

You have a laundry shoot.... LUCKY!

 

Who are you again?

[faith]

.....good one CP.......

[ilovedogs]

You have a laundry shoot.... LUCKY!

 

Who are you again?

LOL ,I was thinking the same thing!!!

 

If it makes you feel any better Faith, my son still needs us to cut his meat for him. Shhhhh, don't tell him I told you all that!

[Caryn]

Hi Everyone!

It's nice to hear all the gals voices again...

Glad things are going good CP. Think about you a lot, especially after Dallas.

We changed up a couple things since then. We use NAC (although not every day and in a VERY low dose) and we use A LOT of omega 3 in our diet. We eat more fish, use flax and take fish oil supps.

Anyway, it has been so long since Tigger has ticced, so long in fact, that he doesn't remember what it was like. Thank the Lord. He is still on his restrictive diet and still has underlying yeast issues that show their ugly head when we let him indulge in sweet things. (We avoid artificial everything, yeast, wheat, gluten, and corn but do allow sweets more than I care to). His symptoms are reoccurring white coating on the tongue after too many sweets and if he gets corned, dark red circles under his eyes. After all this time his threshhold is way up and he has even had GF pizza with corn meal on the bottom and did not tic afterward. But we don't encourage it as we don't want to rock the boat. We like where we are at and never want to go back.

We also still do immune boosting supps and daily magnesium, but he eats dairy again and seemingly is having no problems. I also like to keep an eye on that. He eats mostly cultured stuff.

So I am continually thankful that he has recovered and I pray that he continues to stay in recovery.

 

Caryn

 

BTW, I was interviewed by Doug Kaufmann a couple mos back for his T.V. show. It airs on I believe the 18th of January. I didn't get flown into his studio or anything. It was a phone interview. Only five minutes or so. We chatted a long time off air and he was great. He was one of the original developers of the IgG allergy testing and explained to me that they are not accurate because the samples are loaded with mycotoxins and that is what the body is reacting to-- the fungi. I think he may be on to something. We did not know about his diet or his program when we started our journey, but his IgG test was high in all the moldy foods and when we removed all of them (17) we essentially had him on an anti-fungal diet anyway. Interesting. Our new year's resolution is to cut out the excess sweets and try to make more dishes out of his recipe book. I got his books on tape for free as a thank you too.

 

Keep up the good work, moms! We are warriors, as Jenny McCarthy says! Happy New Year and all the best. XOXOXO

[CSP]

Hi Caryn,

 

So good to hear from you too. So do you think my son will have a reoccurring yeast problem? This was caused by to much abx. I have treated him with starving the yeast and he has only been drinking coconut water/water. His white tongue is gone now, and I have let him have mayo and mustard, and some homemade sweets.

 

Just wondering if I should keep watching this or is he "OK" now? He never had a yeast issue before.

 

Thanks,

CP

[QsMom]

Caryn and CSP,

 

SO glad to hear that your boys are doing well! I've not been on the boards for a while but decided to stop by today and saw your posts!

 

My little guy continues to do great, and he's also really progressing in 2nd grade. His immune system seems to be rock solid, and he's not been sick once this year. H1N1 was rampid in his school in November, and I was so pleased that he did not contract the bug! I've taken him off all of his supps except his multi, probiotic and his Omegas. Like both of you, I NEVER would have imagined three years ago that he'd be this healthy and tic free.

 

Cheers to a new year and to all the outstanding moms and dad on this board!

Q's Mom

[CSP]

Hi Q's mom

 

So glad to hear from you as well. That is really wonderful about you son.

 

Wish I could say mine was tic free, but I'm happy it is better. Oh... and he is cleared to ride, spent his first night at the firehouse Sat. Poor baby has duty on Superbowl Sun. doesn't know what he will do with that HUGE screen TV they got.

 

cp

[Caryn]

Poor baby has duty on Superbowl Sun. doesn't know what he will do with that HUGE screen TV they got.

 

cp

 

 

ROTFL!

 

It is great when that heavy burden is lifted and you learn to enjoy life again. Even when our son had casual light ticcing-- that was such a relief compared to the barage of multi symptoms that he once had. You suddenly realize that it is not the end of the world and life can go on and there is finally that peace in your heart that you never thought you'd find.

 

Yeah, I think the yeast in our son is a constant battle that we have to keep in check through diet management. I met someone online about two years ago that taught me a lot about enzymatic function, etc... She seemed to have it in the family and used diet as part of a regime to keep them all happy and healthy digestively. Our three boys are close in age and over the holidays ate identically. Their bowel movements are vastly different, however. So the internal mechanisms in each child is unique and matters in the overall scheme of things. That is the way I look at things now.

 

I know with Tigger that toxins are a concern. It is just his system. Like Q's mom said, our son's immune system is so much stronger now than it was even BEFORE his onset. I think that is key. He was coming off of reoccurring abx scripts and a series of vaxes at onset 3 1/2 yrs ago. So, CP, I think that was his catalyst, too-- the antibiotics coupled with the vaccines just lowered his immunity into developing an auto immune disorder.

 

Last week our neighbors hosted an old maid night and two of my boys went over to play cards. They gave the kids Caprisun juice bags. Dye-free, not artificial anything. Well, both the boys had devoured two each. I am certain they have corn in them, as 99% of juice boxes do. My younger son had no effect from it whatsoever. Tigger looked sickly later that night. Big huge red patches under both his eyes and they lasted about three days. He's almost 7 now and knew that what he drank affected his face and was very concerned with his complexion and also complained of feeling moody for the same few days.

 

Hubby and I were waiting for the bomb to drop. We were eyeballing that kid for days but he never ticced. We agreed that he has a much more delicate system than his bro. End of story. We are more lax now than before and can go days without supplementing and not think twice about it. Our diet is pretty pure and sometimes I think that is enough but we make sure they get the fatty acids as I think that is key for Tigger especially.

 

He's thriving in 1st grade. Has really great handwriting, is generally very happy with himself, etc.... I am blessed that he has a wonderful teacher and she has a great classroom system that he responds so well to.

 

Am glad to hear all the good news from long time posters. It is so nice to hear success stories. CP, tell your son to enjoy the superbowl with the guys. I can't think of a better place to be to watch the game. Hopefully they won't get a call in the middle of it.

[dee45]

Hello everyone,

Caryn/Char just wanted to say thank you for all your help early on in my journey. Anthony is doing awesome. You were so thoughtful to take time out of your day and help me when this all came about, I try to pay it forward the best I can when questions arise and I can offer help to someone else. Wishing everyone a happy and healthy New Year.

 

Deanna

[abbe]

[quote name='Caryn' date='Jan 12 2010, 09:48 AM' post='51616'

 

Hello everyone,

 

Really good to hear the good stories. The past year seems like a lifetime for me but Nicholas is doing wonderfully also. He basically is tic free without being super restrictive on diet or video games. He stays away from dairy, beef and oranges . If a flash bulb goes in his eyes or laser light he has his eye tic instantly. The biggest change in him has been the steady addition of b6,zinc and primrose. If pyroulia can cause tics then his having it could have to do with why he is doing so well. I really try and balance what he can have and do with keeping him happy and healthy. I have always eaten healthy in the house and I don't find it a burden. I wish everyone peace in your journey to figure out your triggers.

 

all the best

 

abbe