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When you tihink all is fine....


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Marie,

 

Don't worry about the seizures!! People always say that about tics, and yet I only know of a couple of cases of all the posters on two boards where it was an issue.

 

You would know if he 'spaced out' for periods of time.

 

Also, especially with the TV trigger/photosensitivity, the seizure comes up because all the medical community knows about is photosensitive epilepsy. If that were the case, for the amount of TV/computer so many of these kids have had, they would all have had seizures by now. Remember, 8% of the NON-epileptic population is photosensite. I posted a study on this.

 

Really, this is nothing to worry about. I am sure that the neurologist will give you piece of mind on this one.

 

Claire

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Hi Marie,

 

Hmmmm, so your friends father who is a doctor said it was fine to keep giving supplements as it was keeping you busy...and doing nothing else. I think your feelings of wanting to jump off a bridge were misplaced, I would have been wanting to throw the doctor off a bridge!!! And to throw in an added tidbit about the seizures, (just to add more worry) I would stop talking to that person!!!!! Claire is right , the neurologist will put your mind at ease. Your son's teacher also sounds like she is not very supportive. You obviously have advised her of the tics ( by the way my son's teacher did not really notice my sons tics - although did notice the ADHD behaviour that occurred when we were off the antibiotics, they don't notice because there are 25 other kids in the room, once it was pointed out she noticed how obvious they really were) Why are the kids getting junk food and movies at school? Was it not just last week you had the problems with him not being allowed to watch the tv at school - that seems like a lot of tv watching in school time.

I must admit I feel really annoyed that your son's teacher is telling you what is best for your son - she is not living with this. Nor does it seem she is helping you through this difficult time. I think I have just been so fortunate to have a teacher so 'on board' with us - and she has even come up with ideas that I had initially not thought of suggesting, ie - lights off when it is bright outside, computer monitors off when not in use, if lights have to be on just put 1/2 on etc. My son was also moved closer to the window. You did say the lights really bother your son so maybe these things would help as well.

 

Anyway - have to run and get the kids to bed - my blood was boiling just a little bit when I read your post that I had to reply. Hang in there. We continue to be doing great here, no noticeable tics through the day, and minor subtle tics when watching 15 minutes of LCD tv - they go away quickly.

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Alison/Marie,

 

I had the same reaction as Alison about the teacher and the TV, but refrained from commenting!

 

This may or may not have been the best decision (given the last trauma when he got pulled off TV in school) but what really matters is that as a parent, you have a total legal right to set the terms re screens.

 

Given what happened, I recommend that you talk to your son and come up with a plan that is agreeable to him when there is TV time at school. . e.g. for 20 minutes once a week, leave him in (or not). Otherwise, perhaps he goes to a corner of the room and doodles and 'listens' (that's what we did--in elementary school, the kids knew that it gave him a headache--no one cared. Everyone had something in elementary school, allergies or whatever). For a full length movie, we brought in the LCD monitor for the day, as I mentioned.

 

Even once you have a plan in place, don't assume it is being adhered to. e.g. if you start to notice an increase in tics, ask him non-judgementally if he watched TV or worked on the computer at school.

 

And yes, the junk food in elementary school never ceases to amaze me. They always rewarded with junk in ways I never did. Didn't want to train my son that way, even before I knew about junk food and the potential impact on the neurological system.

 

I had the same reaction to the doctor's comments also. We are so careful on this board not to 'diagnose' people, and yet here a professional is throwing such things out. When I told our doctor about the TV/tic reaction years ago, he said maybe it is a brain tumor!!! I went home and researched tics + tumors and found no connection. It is like they are thinking out loud about things they aren't experts in, and don't realize the emotional upset they cause--good intentions aside.

 

Claire

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Yes, I agree with your thoughts on both the teacher and the my firends father. You know I met up with my son's teachers aid today while dropping some stuff off at school. She pulled me outside because of the cameras they have in school, she did not want anyone to know that she was speaking with me. She told me that she noticed less facial stuff and the more head moving, like I was noticing this week. She asked the teacher to pass this along in my conversation that I had with her yesterday and the teacher told her she would not because she did not want to upset me. I told the assistant that I need to know any and all info. The assistants' take is that my son is extremely nervous and holds it in. Much my take on him as well. She assured me that she will try every measure to make him feel confortable, but she told me that they are strict in the classroom. On the contrar,y his teacher tells me she grants him more flexability on behaviour, etc as not to add to the emotional pile. The aid made me promise to keep our conversation on the QT because she did not want to get fired. I have been in the classroom and met with the teacher who seems to me so very nice. Could I be sending him into a setting that is creating the anxiety? Shouild I just keep him home for a while and monitor him? I don't have much clarity these days ...any thoghts?

 

Marie

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Marie

from my own personal experience the ONLY way to absolutely get the teachers to make the accomodations required for your son and report back to you so that you can keep tabs on them is with a 504 plan

 

It is the LAW that once a 504 is in place, the teachers and the school admin HAVE TO perform according to what you have mutually agreed is in your childs best interests.

 

We had our own independent educational psychologist evaluate our son, and then that, coupled with his medical diagnostics, was taken to the initial 504 meeting where you and every teacher that has your child are present. After the meeting, the plan is drawn up and each person present signs it.

 

The plan goes with your child thruout the school years, and at the start of each year, you meet with the new teachers and modify it as necessary.

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I think that 504's are medical in nature. Also, my understanding is that they don't stay in the file forever, e.g. if the situation resolves by high school and you don't need it, it won't be on records for college applications--should this even be a concern for you. Like Chemar, I am all for them if that is what it takes.

 

I believe your child is only in 1st grade? Well, I would indeed consider pulling him from school for a week and seeing the contrast in his stress and tics (assuming that he won't want to be watching TV for hours again, given what appears to be a sensitivity there).

 

Many kids miss school for a week at that age--parents go on vacation, etc. You can bring home a homework packet to make sure that he keeps up.

 

Anyway that you can sit in for the day? e.g. help in the classroom and observe personally? (Is it a public or private school?)

 

It doesn't sound like your school is bad, but a day in the classroom, or a week away might let you see. I know you had the winter holidays, but I think you were still doing screens a lot then, so you didn't have the information you do now.

 

You are lucky to have an ally in the TA. I found that my night-time observations gave me enough info to tell what the tics must have been like during the day. However, it didn't tell me what transpired during the day.

 

Claire

 

edited: It occurred to me: Did the TA notice this on the day that the teacher let him view TV? If so, the explanation may be simple (remember, the impact for my son would linger for up to a week). Regardless though, I personally would sit in for a day at a minimum to check out his comfort (and yours) in that environment.

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No Claire, a 504 is not only medical, and it is also different from an IEP which is specifically for learning disabilities/accomodations.

 

A 504 is a very specific plan put in place which takes into account all of the child's needs.......medical, physical,educational, emotional, psychological etc etc etc.

 

and yes, it can be removed once no longer needed or kept in place and modified for as long as needed

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Hi Marie,

 

Glad you have the TA on your side, it is strange to me how the teacher is seeming to minimize things and feels she is somehow protecting you by not telling you what is going on.

I do feel that often tics are associated with anxiety/excitement when there may be other issues at play - this is from my personal experience of assuming going into the toy store that the increase in tics was excitement when in fact it was the lighting that was the main factor. You have said the lights bother him and considering the tv was a big trigger it would be good to get away from these triggers for a few days.

 

I agree with Claire that there is no harm pulling him from school for a few days, you might even want to do it mid week and by adding the Sat/Sunday you will have a good 5 days and if you feel at that point he can go back he will have only missed 3 days but been out of the environment for 5. When my son was initially having downturns off the antibiotics I had considered shortening his week by having him off Friday and Monday - but he loves school and I felt in the end it was best to keep the routine going. Claire is right to point out that over Christmas you were still watching tv so it will be interesting to see the no tv and no school lighting/school tv/school junk food - and how your son does.

 

Sorry to ask again but is he off milk right now - again this is only because this has seemed to do wonders for my son.

 

You do seem to be getting mixed messages from the teacher and TA so if it is possible it would be great as Claire suggested for you to get first hand knowledge of how the class is run and how your son reacts - you will notice so much more than either teacher.

 

Is your son anxious at other times? I do think that there are many triggers but that they can lessen if we lessen other contributing factors - the emptying the bucket theory.

 

Hope today was a better day

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Marie,

 

You know, I think Alison is right in that milk was the most common food sensitivity here. I take it for granted, since I have read that milk is a common issue with kids with immune issues, but have you thought of trying no milk for a week. We just ran out and I didn't rush to replace it... just as with no screens, the people here who eliminated certain foods found improvement within a week.

 

I keep thinking about that absolutely horrifying story about your neighbor's dog. And the impact on your son. Our children's nervous systems just weren't meant to handle so much stress. Fear is horrible, as is bullying, being pushed too fast in school by systems trying to now keep up with a global economy...

 

I don't cry about my son's situation now, because things are okay, but I did have a dream not too long ago where I was holding him as a carefree 2 year old and he was so completely happy and chatting away without a care in the world. Somehow in the dream I knew it wouldn't last, so I just savored the memory and cried when I awoke for the pure joy that he used to have and now he is no longer sheltered in the real world and

 

I posted on another board once, this song that moved my husband and me--it was part of a music video by John Denver where he showed a carefree elementary child skipping through a wheatfield to this chorus:

 

"Yes and joy was just a thing that he was raised on

Love was just a way to live and die

Gold was just a windy Kansas wheatfield

Blue was just a Kansas summer sky."

 

It made me want to fill my son's free time with JOY as the antedote for the stress of school. My system isn't perfect, but I go out of my way to find joyful laughing things for him (laughter is the best medicine, yes?). For one, we got the Bill Cosby tapes--he is just so silly, if a bit corny, and he tells stories of when he was a child. Then we went on trails and he built temporary 'dams' in the stream, or dig in the garden. I went out of my way--and still do-- to set playdates with children that he seemed very happy around. Since I can't take him for treats, I am learning to bake with him using erythritol for a sweetener (sugar worries me due to his yeast)--that is a fun activity. I work from home, and even though he is in middle school, my small office has a corner for him to join me there on sick days (or after school when he is in the mood), and some activities. But then my son is an only child, so you may get this anyway with your son and his brother and now his new puppy!

 

Alison, funny that you mentioned your considered the Friday/Monday off idea. I always wished my son could have Wednesdays off, eg. 2 days of school, 1 day off, 2 days of school, then the weekend. But no such luck. Oddly, when he gets sick, he tends to get sick on Wednesdays--I think I read his body clock correctly!

 

We applied for a school once (he was accepted). We declined when I saw that they actually had a clause about tuition refund due to nervous issues. Clearly it was common there--my gut told me it was a pressure cooker, and that wording made it easy to walk away.

 

Claire

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Hey and thanks for the support. Well it is Friday and Thursday seemed to be his best day this month. THe facial stuff was gone and some stretching still exists. BUt it does seem like he tries to hide it from me. He actually fell asleep last night without a lot of the twitching. This morning I kept both of my boys home from school and actually took them to work with me. He will have a sleep over with his cousins this weekend at home and it is to snow so he has all of his stuff ready for playing in the snow and camping out in the living room. So with all of this excitement he shows very minor twitching. I do not know much about waxing and waining, or the healthy crisis, but I have smiled bright since yesterday afternoon since he was not so twitchy. Also yesterday I let him have about an hour of LCD TV and he watched with some twitchiness but after 10 minutes or so it seemed to mellow and there really was not a lot of residue afterwards. So I am hopefule that what he is now experiencing is the result of the supps and strengthening of the immune system and what he was doing lat week was the healthy crisis and not wax/waine. He is off of all dairy, atrifical colors, refined sugar and pasta. That was his diet prior to this condition so I really can say that if it is a food allergy it would be within the confines of the 4 items. He is craving meats, eggs, and corn and his sugar (now from health food cookies, soy ice cream , etc) cravings are extremely low compared to last month just prior to this explosion. These past few weeks with no screens developed a bond between he and his brother and I see the jealousy issue lessen (not gone but less). I see he cries now when his feelings are hurt, he no longer holds in the tears. He speaks often of bad men and now expresses his worries. He asks "DO police come here? We tell him all bad men are in jail and as a family we taught him to sing Hakuna Mattata, and we joke and play until he feels better. Last Sat. I started jucing to try to detox him and he is doing well adjusting to his new diet. His new puppy is teaching him that you can love a dog and not all dogs are bad. Since the puppy is still young it is nippy and we taught him that all puppies bite and we just have to teach it not to. I hope he makes the conclusion on his own that it was the Owner of the dog who was to blame and not the dog who mauled his brother. I hope that he does not share the guilt aspect of the mauling like I do. I got the news a couple days ago that the wacky neighbor just got a contract on her house, so by summer she will no longer be on the block WHEW! and I am hopeful that he will also make the conclusion that we do not live next door to bad people anymore. There are so many positives that we are experiencing, but they seem to fall by the way side when I see the twitchiness- stretching an yes tics. My question with the empty bucket...can the bucket be so filled with a mixture that it overflows or is it just the one thing? Like can stress and poor immunity cause the photosensitivity that causes the tics? Sorry for my spelling guys...I have limited time and no spell check

 

Marie

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Hi Marie

 

so many things can all be influencing each other that yes, it probably is all inter-related in some way, and so as you start seeing improvements in one area, so others tend to follow.

 

Stress really does have an amazing effect on our bodies....one that the medical community is beginning to take very seriously. I remember when I was at college and interested in psychosomatic medicine, it was considered as 'quack stuff" and scorened. Now, some better med schools have it as part of the curriculum.

 

it is so good that the neighbor will soon be gone and that your son is bonding with his puppy. All part of his recovery from the post traumatic stress of that very scary experience.

 

as I often say here.........look Marie !......see that light shining at the end of the tunnel ! :)

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Cheri,

 

Like it so hard to keep from crying these days, but your last line just made me cry for a much differnt reason. I really do want to see the light and I remain hopeful. Cheri, Claire and Alison you all seem to be such great mom's, and not to get off of the subject but I feel that I am trying to blame myself on a multitude of levels here. The stress, school, immunizations,genetics, whatever, I feel that I am to blame. Did anyone of experience this emotion?

 

Marie

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Hello everyone

 

I've been reading the posts and wanted to say how fantastic it is to hear about the new success stories.

Alison I'm thrilled to hear your progress and thankyou for posting such detail as it helps us all to fill in the jigsaw.

 

Claire and Chemar again thankyou for your time. Your experience is so extensive and I sometimes go through your history of individual posts as I find a new layer of learning each time. I have many layer to go!

 

Here in Australia the kids are still on their long summer break, and they go back to school next week.

Matt (aged 12) starts High School and I am hoping it doesn't stress him out.

Next week he is also allowed to start sport again after his operation last year, which will also keep him busy and away from screens!

 

Although the break has been fairly relaxing, his progress has been up and down(I think mainly to foods), but I try to look at it positively in that new clues present themselves.

 

A few meals (takeaway at friends house) showed obvious increased tics, but during a day when he ate lollies all morning he had a sudden improvement!

 

Last week he was booked in to see the osteopath after his neck tic got much worse, which I then cancelled after he had made a dramatic improvement all of a sudden!! This was despite eating tons of fruit over the last few days and lollies all morning. Go figure!

I looked back at the last few days, and realized that his milk and wheat intake had been dramatically reduced. He was also 6 days into the new supplements

So far in his case it seems that salycilates(fruits) don't affect him. Colours (in the lollies) may also not be a problem. But other additives eg MSG etc are now established as definete triggers.

Like many others milk keeps popping up.

 

I had also been giving him supplements for a week. Unfortunately these were left behind while we were on a three day beach holiday, and I have just replaced them.

The improvement did seemeed to suddenly occur after about six days of supplements so I'm hoping that this will repeat itself. Not sure if it was the supplements or less milk/wheat.

 

Also Claire, his screen exposure was significantly reduced during our 3 days at the beach..

Reduction in screens is the thing he resists the most. His exposure has lessened but certainly not to dramatic low levels. I'm not going to push it now, as it will reduce automatically with school and sport in the next few weeks.

If things don't get better I will put my foot firmly down and do another week on no screens (without going to the osteopath during that week)

 

So for now I will try to just stick to natural foods (and include fruit) but avoid milk and foods listed by Bonnie and start supplements again.

 

Chemar armed with Bonnies list and your, I went to the health food shop, and they recommended a product called Ultra Muscleze - magnesium Resuscitation (to save me buying tons of individual vitamins) plus Eflalex.

In Australia I haven't been able to find Magnesium Taurate, but can purchase magnesium and Taurine seperately.

Muscleze seems appropriate, since I do know that in his case facial and neck tics are tightening of his neck muscles. The osteopath gives instant relief, but it only last about a week before the tics start to resurface. He believes foods are the trigger.

I have signed up for a 2 day massage course in February at out local community centre, and hopefully will learn something new!

 

The natropath at the health food store urged me to start the Eflalex immediately because you need the combined effect. My thoughts are to start them in a week after reading that some experience negative reactions. I also have flaxseed oil that he could take instead (my husband takes that).

 

I would greatly appreciate your comments about the contents of the Muscleze to see if there is anything that I should add and your thoughts on when to start the essential fatty acids. Muscleze is low on the Cal, but the naturopath thought the other ingredients to be more essential, and to add Cal latter.

 

Muscleze: Recommended Dose 5g twice a day.

 

Each 5g has Nutritional Info:

Magnesium 280 mg (equiv to 2000mg total magnesium chelate)

Malic acid 900 mg

Taurine 500 mg

Glulamine 500 mg

Vit. E 80 mg

L-Carnitine 50 mg

Phosphorous 24 mg

Calcium 18 mg

B1 25 mg

B3 20 mg

B12 20mcg

Folic acid 150mcg

Molybdenum 60mcg

Selenium 25mcg

Potassium 57 mg

 

Ingredients: Magnesium chelate, malic acid, Inulin, taurine, glutamine, potassium aspartate, d-alph tocopheryl succinate, natural orange flavour, calcium hydrogen phosphate, pyridoxine hydrocholride, l-carnitine bitartrate, thiamine hydrochloride, nicotinic acid, sodium molybdate, selenomethionine, folic acid, cyanocabalasmin.

 

 

Efalex:

4 capsules twice a day

Each capsule:

Fish oil (from tuna fish) 294mg

Evening Primrose Oil 140mg

Thyme Oil 1mg

 

 

Marie,

The teacher experience is soooo unhelpful.

We had similar negative experience at primary school for our eldest son who has ADD and is now 18.

In grade 2 he had extensive testing with a education psychologist who visited the school principal to discuss appropriate learning strategies etc. The principal comments was that it was all hog wash, and just an avenue for them to earn extra revenue. What a wasted year.

 

Things got better after that year by me networking and being being careful with teacher selection.

Interview the school and find out about best possible teachers.

In grade 3 he had the teacher that was most helpful helping me find out what worked and what didn't.

Some of the infomation she gave we wasn't great, but she was honest, and slowly together that year we made great strides in finding his triggers. (In his case they were salycilates ,amines, pereservatives etc).

We found that the foods were like night and day with respect to his mood, behaviour, but that ritalin was the most helpfull for his concentration.

We also found out that ritalin on its own didn't work (food overrided the effect)

I couldn't have done it without her support, and what we learnt that year has stood the test of time.

Glad to say that subsequent to that year he has for the most part been medication free.

 

My twins were finishing primary school last year and our eldest finished high school, and it was an emotional, reflective time as I thought back on all the teachers an our experiences at the schools over the last 13 years.

Although she had not been his teacher for 9 years and our paths did not cross for except for hello etc,I wanted to let her know how important she was to his life's path and wrote her a card with a present to acknowledge her help.

We both started crying, and she also said how that year also changed her life in that she was amazed at the findings, and it gave her a totally new direction in her teaching.

 

Hiding information to protect you, or assuming what the cause helps no one. To me it is a form of child abuse.

 

Personally in my experience I don't feel you can totally change how a teacher/school will deal with your child. More helpful would be to find more supportive people like the teachers assistant. Ask her and network with others to find out what schools and teachers will best help your child. During primary school for my eldest, we were able to request specific teachers. I don't know if you are able to do that in your schools.

I don't say this to ensure that your child is protected from negative people in their life, but merely to give them the opportuntiy to find skills and strategies that will help them live in the adult world.

Great help is there as you can see from this forum.

 

Marina

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