Positive results!

[mommaonamission]

Hello everyone! I don't know if it is just a good day or a miracle, but over a 3 hour period since my son has been home...just 3 or 4 tics total!! This is a far cry from the last week of shouting at the top of his lungs every 20 seconds. I mean tics have decreased by 80%! I hope I am not speaking too soon, but I think our supplementing has been working. Yesterday was better than the day before, and today was great!! Here is what I think it is...

 

Carnosine! We cut out caffine and most sugar 3 weeks ago. Two weeks ago we started some probiotics (Jarro-Dophilus) and Wholezymes. Also, I have been giving him Grapeseed extract and Natural Homeopathic allergy tablets for mold, yeast, and dust. I didn't see too many results, but expected it to take a couple of weeks to work into his system. Well, Sunday I picked up a bottle of Carnosine from Wholefoods after reading Fireflys post about it. I started him on it Monday and have been giving him 500mg at morning and night (he is 12 and weighs 82lbs.) Yesterday they were definitley less, except for right when I picked him up from school which is when he usually releases what he has been holding in all day. Last night was good....today...wow! I worked most of the day since Holidays are approaching (we own a retail business.) I spoke with him several times on the phone and NO shouting! Reluctantly, I let him go bowling with his aunt since the poor guy hasn't had much fun lately. When he got home, I expected the tics to be pretty bad from excitement, holding it in. He hardly did it at all! I couldn't believe it. He even watched tv with no shouts.

 

I can only attribute this to the Carnosine primarily! I'm sure it doesn't hurt that we are combating the yeast and detoxing him a bit. Firefly, if you read this, thank you so much! Last weekend, my heart was breaking, now I have hope. I know it won't always be easy, but doing things naturally really does work.

 

One more strange thing. My son picked up on pig-latin while bowling with his aunt and her friends. Everything he said before he went to bed tonight was in pig-latin, he is silly like that. It makes me wonder too, maybe he was busy concentrating on how to say things, and in turn, the tics didn't come out. Maybe it is a coincidence? It does make me wonder if some kind of therapy or speech techniques could help with vocal tics. Anyway, good night. Happy Thanksgiving to you and your families!

[mmazz]

Great News and congrats. It is alway uplifting to see a fellow poster rebel in glory. What a wonderful gift for you. I hope this continues for you and your family.

 

Happy Thanksgiving to all and

 

Be Well,

 

Marie

[mommaonamission]

Thank you. I know it won't always be a good day, but it gives me hope. On a down note, going with his father, who doesn't seem to share in the importance of keeping with routine, might set him back. It's not that he doesn't care, he just doesn't have to suffer the consiquences of getting my son out of routine. He just sends him home. I wish his dad would get on the same page with me.

 

Happy Thanksgiving to you too! Even on bad days, I have allot to be thankful for.

 

Great News and congrats. It is alway uplifting to see a fellow poster rebel in glory. What a wonderful gift for you. I hope this continues for you and your family.

 

Happy Thanksgiving to all and

 

Be Well,

 

Marie

[ad_ccl]

Great news! Wishing all of the American's a Happy Thanksgiving.

 

Just as a quick update - my son continues to improve - we did increase the probioitic yesterday - so don't think that would have made much of an impact yet - but we will stick with the higher dose for a week - I do think whatever his body was fighting is working it's way out - and the added stress on him immune system due to candies etc did not help. He stayed for pizza lunch today ( I struggled with this - but he really wanted to - and I had told him at the beginning of the year - he could have pizza at parties and on pizza day - once every couple of months) It will be interesting as a test though - if he goes down hill in a few days - it will be a pattern - with hope he will continue to just get better.

[Ronnas]

A great post to read. Hang in there and take care. Ronna

[mommaonamission]

I'm glad your son is doing better! I have determined two things, and think I am on to something else. I know that caffine is NO GOOD, and sugar is NO GOOD. I have read that artificial colors are no good. The strange thing is, before this PANDAS thing, my son had no reaction to these things. I didn't really need an excuse to cut out his caffine and sugar, but I didn't think about pizza. He had a slice last weekend, and whoa! Also, that was the night we attempted the movie, and he put that orange salty powder all over his popcorn (we splurged since he had a friend tagging along.) Looking back, that was probably one of his worst nights.

 

My point is...pizza is no longer good, right?. This is not a good thing considering my son, like all other children could live off of pizza alone.

 

I guess this is common knowledge on this forum that pizza is a trigger. Is it the red sauce?

 

Oh, I am dreading telling him to cut down on the pizza.

[ad_ccl]

Hi Mommaonamission,

 

Just want to reply regarding the pizza issue - for my son - he tested very high in his IGG test for casein - and all milk products - so I think it is the cheese that is the issue in triggering his tics - as he does periodically (more often recently) have wheat with no ill effects. He has no milk products in normal daily life and has not since last January when we did the test. Interestingly - his tics have increased through the day today - after being on the decline daily for over a week - the pizza day was yesterday - not sure if the pizza is the cause of the increased today - or a possible growth spurt ( he ate tons tonight for dinner) or watching more tv than usual with Saturday morning cartoons - or a combo of all three. We will see what the next few days bring. The good thing is - I know they will go away. Still a learning game for me even after almost a year at this!

 

By the way - You do not have to cut out pizza for your son - My son has it at least once a week - but I make it - Gluten Free, Casein Free dough - and I put mozerella goat cheese on. He loves it - and it is actually really good - we do a pizza night usually on Friday. The pizza he has had over recent weeks is a new trial - one at a party ( usually I take my own) and once at school ( last year I always took my own for him). I am trying to draw that fine line between allowing him to be a "normal" kid and wanting to keep him in a bubble. Hard line to draw!

[Ronnas]

I will tell you a quick story...baby is feeling a bit better...but I am exhausted!

 

When I first started looking at food as a trigger for my son's tics...my husband was "sort of" on board...mostly I think he thought I was crazy because I insisted that milk (casein) was a trigger...this includes ALL dairy including cheese.

 

He became a true believer one night when we were at a bowling fundraiser with the kids. It was a pizza night. Prior to supper we were having a great time and Kurt was doing very well. We had the pizza and then resumed bowling...Kurt changed right before our eyes...tics, impulsive, budging in front of his brother...a real handful...my husband was a believer after that night.

 

We eliminated milk (casein) completely along with corn, eggs and chocolate and my son improved alot. At this point he tolerates corn, chocolate and eggs but milk is still a problem...in the sense that I would NEVER give him a glass of milk...however he does now seem to tolerate cheese if we don't give it more than once or twice a week (we had pizza for supper tonight).

 

Interestingly last week he seemed "off" and I even said to a friend..."I swear someone is giving him milk...do you think he is getting some at school"...well jeepers a few days later I was tucking the kids into bed and Kurt came into his room drinking a BIG glass of chocolate milk (My husband had bought a carton and the carton was a different color and more similar to the soy milk that Kurt drinks) and Kurt thought it was "his" soy chocolate milk...mystery solved and no more chocolate milk for Kurt...he had been drinking it for a few days before I noticed!

 

Anyways...a book that I highly recommend and started me off thinking about diet was...

 

http://www.amazon.com/gp/product/076790798...=books&v=glance

 

It is about autism but I think just about anyone can relate to this book and it is the story of a mother who made an incredible difference for her child and shows that as a parent we can make a very big difference!

 

Ronna

[ad_ccl]

Hi Ronna,

Hope you will get some rest tonight - so glad the baby is feeling better. Thanks for the info on the book - I will look out for it. There is no question food is an issue for my son as well - even my middle son with no issues - when on soy milk became a terror - and his test ultimately showed an allergy to soy. And the baby became miserable when he started on homo milk - crying and not sleeping.

I am glad to hear your son can tolerate pizza now periodically - I am hoping to get there sometime too - As always I go back to the bucket theory - I would guess if I had not had the flu and my son was not already fighting that - that he may well have managed the pizza with no ill effect. This summer he had pizza once - within 1/2 hour he had some eye tics but they were gone within a few hours - and they were subtle and infrequent - I would guess his immune system was stronger at the time so managed the "assault" with little and short lived ill effect.

Wishing you many hours of sleep in a row!

 

PS - it was a bowling party that my son had pizza at last week - other triggers there were the lighting and the computer screen for points. Part of me wanted to just take him home when I saw minor twitches - but he was so happy - and I do want him to have good memories as well. No one else noticed the twitches but me. I need to relax a little.

[FireFlysWay]

Mommaonamission:

 

I am so glad your son is doing well on Carnosine and the other supplements you are giving him !

While most people focus on the tics problem (understandably), another TS symptom is the explosive, uncontrollable episodes of rage. This could lead to a lot of relationship damage, especially in case of TS adults, if it is not recognized as a TS symptom and dealt with accordingly.

The great thing about Carnosine is that it appears to get rid of the "rage" problem almost completely (in my case and a few others I am aware of).

In case of TS kids, you may observe that the child is calmer, more "reasonable", less on a hair trigger and not given to explosions.

I'd love to hear from moms of Carnosine kids if they notice a calmer personality (apart from the reduction in tics).

 

Good luck to everyone,

Firefly.

[mommy11]

This is great news! I hope your son continues to improve.

[mommaonamission]

Firefly, it is so funny you should mention that. Before I got online and read your post, I was on the phone with my mother. She is turning into a huge herbal advocate these days and is on board 100% with this whole tics concern. Anyway, I was just explaining to her what a wonderful night my son had last night. Usually, after his father has him for a weekend, I have to work twice as hard to get him back into routine when he gets home (food, discipline, is not monitored there much.) To my surprise, I picked him up with silence! Talking of course, but no shouting. Fifteen minutes down the road, still no tics. Usually once we get home it is a huge struggle to get him into routine. I usually have to tell him at least 3 times, get your bath, pick up your shoes, etc...When he eventually decides to listen, it is always followed by an outburst like...FINE, Gosh! Chores are never done willingly, and he is usuallly very short tempered with the cat. I feel really bad because before I realized these rages were common with tics, I was always fighting with my son. He was always grounded because of his impulsive mouth. No matter the consiquences, it was almost like he could not control the words coming out of his mouth. It was a battle of strong will. This was especially disturbing for my husband since his son is so passive and obediant (he lives with his mother though.)

 

So last night....no back talk, everything done with no questions. Bedtime was not a struggle at all. In the past, if you were to wake him up in the middle of the night by accident, he would be angry and mean. I entered his room last night to turn off his night light, and when he woke up momentarilly, it was "good night mom." Oh, that was music to my ears.

 

I always wondered why he was so angry, he has everything a little boy could want. I was driving down the road the other day in horrible traffic. I needed to be somewhere and people were cutting each other off, I wasn't moving, and there was nothing I could do. I was having horrible road rage and just had to scream outloud in my car. Then I thought about Kevin...he must feel that bottled up pressure all the time. I have since then made allot more effort to be patient with him.

 

I really thing the Carnosine is making the biggest difference. I can't imagine that much progress coming from any kind of medication I could have put him on. Take care everyone!

 

Mommaonamission:

 

I am so glad your son is doing well on Carnosine and the other supplements you are giving him !

While most people focus on the tics problem (understandably), another TS symptom is the explosive, uncontrollable episodes of rage. This could lead to a lot of relationship damage, especially in case of TS adults, if it is not recognized as a TS symptom and dealt with accordingly.

The great thing about Carnosine is that it appears to get rid of the "rage" problem almost completely (in my case and a few others I am aware of).

In case of TS kids, you may observe that the child is calmer, more "reasonable", less on a hair trigger and not given to explosions.

I'd love to hear from moms of Carnosine kids if they notice a calmer personality (apart from the reduction in tics).

 

Good luck to everyone,

Firefly.

[brett]

HI, it sounds like you son is doing great! What good news. I hear people referring to Carnosine a lot. What is Carnosine? Brett

[FireFlysWay]

Brett:

Carnosine is a natural compound found in the body. It is a dipeptide (made of two amino acids), so it's a little protein.

You can read more about it in a thread that I started on this site called "Carnosine - A Miracle Remedy"

 

Good Luck,

Firefly.

[mommaonamission]

Hi Brett. Obviously from reading this forum, different things work for different people. For instance, my son can drink milk (lots of it!) with no problem. But I read allot of posts from mom's on here that have to keep their kidos off of any dairy.

 

I looked into Carnosine after reading Firefly's "Miracle Remedy" post. After researching it, it seemed that studies showed it's positive affects with Autistic children. One of the benefits is to protect brain proteins and biochemistry. All I knew was that in one days time, something triggered something else in my sons brain and caused his tics to surface with a vengance. I was very interested in a natural supplement that could help straighten out his chemistry.

 

We have been on it for 2 weeks now. He has taken 500mg (one tablet, I think they only come in 500mg) in the morning and 500mg at night. He is 12 and weighs about 80lbs. Tics have decreased by 75% even on bad days. His overall behavior has also imporved within the last few days. Not as much rage. And you know what else, his memory is better. It might not be for your son, but it is worth looking into. I thank God every day that we haven't had to resort to any medication. Good luck and keep us posted on your son. I hope things are getting better.