Anger management and TS

[Caryn]

I want to know what kind of behaviors you all see/have seen in regards to your kids and anger/rage attacks prior to the diet and afterwards.
I found this website:
http://www.tourettesyndrome.net/rage_description.htm
and thought maybe it could spark a discussion.

We had an episode at school this week. Tigger had two substitute teachers and they missed his birthday, unfortunately. They did celebrate it a day later and on that day he had a lot of anxiety. Apparently he had a tiff with a boy in his class during play time. He tells me the boy took his car at the car table. He yelled at the boy and as a result the substitute teacher made Tigger sit in time out while the other boy continued to play and enjoy himself at the car table. When the teacher went to discuss Tigger's behavior with him she said he started to bite his own hand. She was very alarmed by this and had me stay after school to discuss it with her. I asked if he had hit or bit anyone else and she said no. I did not get overly alarmed, and I am wondering if my response was not what she expected.
Tigger did not draw blood, as a matter of fact, he had no marks on his hand when I looked at it. When I talked with my husband he and I agreed that this was probably the 'best way' Tigger knew how to vent his frustrations. We did talk about it with Tigger afterwards, but you know it is hard to discuss how to respond properly when life is 'not fair' to a 5 year old who is still only in preschool.
Before the diet Tigger had outbursts that were much more pronounced and had actually bitten other kids, including his brother Chuckles. He used to have daily rage attacks that would last quite a while.
We did get an additional dx for mild pyroluria before he went GF, and I believe that it will correct itself over time with a GF diet as there is new research to suggest that.

Just wondering what your thoughts are and if any of you have seen similar behaviors. 

[sterlingsmom]

You have to love school! We just got Sterling's first report card back this week, the conduct report was so bad you would think he has the worst in the school. One week they say he is doing so good, the next week they tell me he has ADHD (because if you can not sit still all day, that is the answer).
Sterling has lots of aggression sometimes, I am not sure he knows yet how to handle it. He can be very mean to the kids and last week lashed out at a few, which landed him in the principles office again! Unfortuanatlly, that same day I found out he was exposed to Strep at his afterschool, and the blinking came back. It has been 3.5 months!!! When the blinking comes, the behaviour gets worse, sometimes unmanagable. We do not know if it is PANDAS or stress or what. He is a very anxious kid and his teacher is leaving, the new teacher comes tomorrow and they have never met her so he is a mess about it. It does figure that he would get the class that is the wildest and would loose a teacher. The neurologist wants to pull blood this week to test his strep titers, etc. I am so worried, he has been through so many doctors appts, blood pulls, MRI's, etc. this year and he is so violent when getting his blood taken.
Will Tigger go to a public school? Have you heard of kids like this having success at a certian kind of school, like private, montissori? We tried to get him into a private christian school last semester and he got denied. See we have already started kindergarten, so those schools want a recommendation from his teacher.....not sure we will ever get a good one.
I know how you feel about the school/teacher thing, it can be so stressful for the parents to have to worry and hear about the bad days. Hang in there.

[Caryn]

Have you tested for strep antibodies? I'm just wondering how that went. Tigger settled down as soon as his teacher came back. She missed a whole week and he missed a couple of days before she did, so there was a lot of high anxiety. I agree with you. Our ds is very unsettled and disruptive when he feels insecure. He sort of wears his worry 'outloud'. I have noticed a drastic improvement since last year and I don't know if it is the food, mainly, his maturity, or a combination of both.

Has your son ever been tested for pyroluria? I am just curious. The treatment is basically an increase in B6 and zinc stores (other vits to help in absorption). The vits help to balance out the body and actually improve mood. To learn more about his dx I did a bit of research and posted a simple article about it on my blog: http://healthy-family.org/caryn/63

There is a strong connection to pyroluria and food intolerance/ingestion of intolerant foods, especially gluten and milk. I would imagine that the GFCF diet should have improved his behavior, but zinc absorption may still be an issue and so zinc supps may be beneficial. We did a simple urine test to find out. He was able to do if from home and then we mailed in the sample. Over time I have decreased the amount of vits as the doctor I am in contact with says that once the patient begins an optimal diet (Gluten free if you are gluten intolerant, etc...) then the condition will more than likely correct itself over time, but will flare up when the person is under stress. Depending on the imbalance it could take years to self correct. I will give the vits when I know he is under stress (as I have done this week) to help him cope better.

We have him enrolled in a Catholic school at the moment. I did look into the local public school district last spring, even had him screened and took a tour, but our local district does not have a good service program IMHO, and does not have a good overall score on Acheivement testing. We are really happy with the school he is attending. I think he needs the added 'moral compass' that they provide. It is a sort of anchor for times when he kind of falls off the bandwagon.
I think your son will probably adjust just fine when he settles in with his new teacher. Losing a teacher is a major upset, especially when you are young like that and unable to articulate how you feel. I  have begun having special 'moments' with Tigger to talk about feelings and this is helping us to understand each other better. I'm using books that I read out loud to him and then we talk about the characters. It helps me to crack the code. Sometimes I am absolutely amazed at how he thinks about things.

[sterlingsmom]

He sounds so similar to Sterling. Sterling is the most sensitive, emotional boy. He is very logical almost like an adult in expressing himself, then the next moment he acts younger than his age. I use a lot of books that talk about feelings too. I also have a Daily Devotional for kids and each night we pick a "topic", it is usually a story to teach a character, like temper, anger, or happy and excited. There is a story, a prayer and a page to color, or activity. His assist. teacher said his blinking was very bad in the morning yesturday and when I picked him up he could not stop. He moves his mounth and shuts both eyes really hard. He said his head hurt :-(
My husband and I go to the psychologist today to go over her last 3 visits with him, then we will go to get the blood drawn after school. We did not tell him yet, so worried. I have him a Lego toy so maybe that will help some.
Oh, my mom wants me to go ahead and give him the antibotic (strangly enough, it worked in the past). Not sure what to do
Thanks for your note about Tigger and the stress, i think it could be that too. This all started around the time I had our second son, and after we finally got rid of it, it came back around the start of Kindergarten.
I will let you know what the test tell us. Take care.

[sterlingsmom]

Caryn - We got some test results back. The ASO titers were 100, which is low, however the strep blood test was positive for strep. We are still waiting for the DNAT test (not sure that is, i might go the ACN board and poke around). The neurologist said they do treat strep and faxed the report to the peditrician.. so here we go again. Back and forth, no one will say PANDAS for sure.

Oh, the tic was its worse on Monday, but Tuesday it got much better and today I have noticed very few and the behaviour is much better (keeping my fingers crossed). From reading the ACN board, I started colliodal silver and grape seed extract, I think that may have helped.

We are waiting for the Ped to call back about the test. 

[Caryn]

How is Sterling after the strep dx? Tigger was tested for titers too last year but his were never elevated. His CBC did show that he was just getting over an infection, however. I remember reading at that time about Dr. Swedo's theory of PITANDS, a sort of PANDAS dx but instead of a high strep antibody it was due to another type of infection.
One thing I have figured out since going gluten free with Tigger-- The constant infections are a thing of the past. He used to have ear infections, croup, gastroenteritis, etc.... very frequently. I had to put him on antibiotics more than I would have liked to when he was little.
In the past year he has only gotten one case of the flu. He has had some slight setbacks, but they were directly related to gluten contamination and short lived (not needing antibiotics or anything). He is very sensitive to gluten-- we took him to Olive Garden last Saturday and he ate from the GF menu but was accidentally served a side containing minimal gluten. The result was explosive diarrhea and a tummy ache 12 hours later. He was so bad he had an accident at one point. And it's not like he ate a burger or something. He had roasted potatoes that had a light seasoning that included gluten (I called and talked with the manager). I bet his gliadin antibodies shot up after that!
I'm not sure exactly how I feel about the whole PANDAS dx. It is a clinical dx and there is not yet a genetic marker or definite blood test to determine it. Doesn't long term antibiotic use make you nervous? In our case Tigger was always seemingly 'fighting something off' until he went gluten free. I could have easily fallen into the antibiotic trap, and my biggest worry is that too many antibiotics cause candida overgrowth.

[sterlingsmom]

Hi there, his ASO titers was only 100, so they say the normal number is 200 and under. The positive strep panel the doc said was normal for anyone that was exposed,so we did not so any antibotica. I used the Silver Colliodal and grape seed extract in addition to his other supliments and it is almost gone (the tic). I am not sure what it was, because the day he went to school and had the new teacher it was bad, but it was almost gone the next day. the anger and aggression are gone too, it is like he is a new kid so it could have been stress. The baby is teething right now, so mornings can be crazy with him whinning and us both getting ready for work. Before church Sunday (he had not blinked is 4 days) we had one of those stressfull mornings and he was blinking in the car! So it could be stress induced. He has gotten 7 smileys in a row with the new teacher. That has NEVER happened. This is her first year teaching Kindergarten, but she spent 8 years teaching a pre-school class for autistic children so she views teaching the individual, not the "class". I think I got lucky. She added sensory centers and Sterling loves them. I agree about the antibotics, he as been on them since 6 months, he had bad ear infections for years. He has had 4 sets of tubes. My mother was very angry with me for trying to treat him naturally and not use meds/antibotics, but it is gone now so I feel better.
He does have a weird skin problem we have been dealing with for months. The peds finally sent us to a Dermatologist. Last year he had to take 2 sets of antibotics, and two antibotic creams and it never went away. We have been waiting for it to create a "puss" area again so we can get a good culture and on Monday it was back so I rushed him in. I just have this weird feeling he has strep or something similar on his skin. The test takes 10 days.
That is amazing about tigger and gluten. Scary that he reacts so fast. Atleast since it involves his bowls you know what it is right away. Me and my husband are going out of town for three nights and my parents are keeping the kids. I am worried, my mom has a hard time understanding that wheat/gluten is not just wheat bread, it can be in soy sauce, anything. I mean Pringles have milk and gluten!
Hope all is well with the kids.

[AngelaK]

Hi Caryn     AngelaK here I came over here from acn forum (Kengela over there)   I havent posted my details yet will get to that later, for now briefly, my dd was dx this fall with ts and add  she has had tics since before she was 2 of course then I didnt know they were tics back then. In July 09 she started talking with her mouth looking like someone who had a stroke I took her to her ped who said its a speech thing if it doesnt go away in a mo she can see a speech thearpist. In less than 2 weeks she had several complex  motor and several vocal tics, and her whole demeanor seemed to change she definatley had fits of rage infact that was the part that scared me the most. Even when she wasnt mad she just seemed not herself.   I probably should have done a little research first but i just jumped right on GFCF and she improved in all areas by the time she started kindergarten. Now since Christmas she has started blinking and she now has a neck tic, I m guessing these are due to all her special treats over the holidays this is  our first waxing time its got me very nervous about the future once again. Im planning to start her on magnesium any suggestions?  Ive started the epsom salt baths   Only every other night? also Im a bit confused re calcium I see some comments saying it makes tics worse then others suggesting using it?  well so much for keeping it short  this and acn have so much helpful info its kind of overwhelming but i sure do feel better knowing people like you are here    thanks  Angela

[Caryn]

Angela,

I have heard from many folks over the years who were not too successful with the GFCF diet for neuro issues and I think that is because it allows too many fungal foods in it-- peanuts, corn, chocolate, and sugars.

So your hunch that the holiday foods have caused symptoms to return is plausible.

Many folks that do the GFCF see immediate improvements and a lot of the time they find that their child still has residual symptoms that just don't seem to go away but that the condition is better and more manageable so they stay with it.

Some quit and try other routes, like medication. Others decide to take it further and try to eliminate more problematic foods to see if the condition will improve more.

I have a strong hunch that a majority of the time these kids have problems with their gut because 80% of the immune system is in the gut and if it is not functioning right then autoimmune problems surface. So the theory is that if you heal the gut the condition will correct itself.

What we did for our son was put him on an antifungal diet. (There are several kinds out there-- SCD, Doug Kaufmann, etc....) We did IgG testing and kind of created our own based on the results. I have since learned that IgG tests can have inaccurate results because the samples are laden with mycotoxins (fungi) and that the reaction on the test could be to the fungi and not the actual food being tested. So I am not sure you would need to do an IgG test. You would probably get results just by trying the diet.  We included digestive enzymes and probiotics.

We don't have to keep to the strict diet anymore and my son is doing just fine and symptom free three years later. We continue to avoid all yeast, wheat, gluten, peanuts, and corn but do snack on chocolate, use dairy, and eat sweeten foods infrequently.

If it is a possible fungal issue your dd's tongue might have a white coating on it. She may be wetting the bed. She may be craving sweets, may have ringing in her ears, there are many signs including skin conditions.

We do magnesium daily. Calcium balances magnesium, so too much of it could deplete magnesium stores. Too much magnesium will cause diarrhea.  We didn't do a cal mag supplement because there is corn in liquid calcium. We just use diet for calcium-- but that's us.  I like Kirkman labs for magnesium. You want a good absorbing one. Kid's Calm has corn in it, too, so we don't use that. Epsom salt baths are very good. See how she does. If she is really reactive you could do it every night for a while. You could do a foot soak while she watches her favorite show. You could also make it into a lotion and just rub it on her arms too.

Hope this helps.