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[marina]

Hi Alison

Thankyou for your quick reply

It's 3 in the afternoon in Australia, and happy to say that today Matt has improved significantly. Fingers & toes crossed!

Any improvement makes life seem so much better.

He has continued with the stretch exercises, and I have just started a few extra yoga ones.

 

I'll stick with the current supplement for a few more days to see what happens.

Efalex is waiting in the pantry shelf, but will postpone introducing it.

 

Yes we have been through very strict elimination diets (no salycilates, amines, msg milk etc). The elimination diet didn't show any result last year and I felt he was just totally stressed and sick of it so stopped.

 

Years ago, when he started eye and nose tics we also did the diet. No improvement for 10 days, after which we also eliminated milk. There was a dramatic improvement after that, however challenging milk didn't bring back the symptoms. He stayed with only minor symptoms until last year.

Perhaps milk is an issue, and I at his age daily came out with massive hives which turned out to be milk intolerance. I have now restricted milk to one glass per day. (he uses to have copious amounts of dairy) He hates soya, but I do use it in cooking.

 

You said you have not eliminated all milk products. What dairy is he still on.

 

Food intolerance has been a major issue for myself and my eldest son, so will not be surprised if Matt also effected. Funny how it has each targeted us differently.

Stef with behaviour, concentration. Me with hives as a child and then serious ulcerative colitis, liver and other autoimmue problems. Conventional medicine did not help me, and doctors basically told me I would most likely end up with colon cancer and require a liver transplant.

Happily that did not eventuate, and I have been very well for about 15 years. The answer for me was food intolerance, and treating my liver with acupunture and milk thisle. I still need yearly colonoscopies as a precaution, but all they find is some scar tissue.

I am reluctant to do the path of blood allery testing, because these never showed up results for myself or eldest son. However, testing is probably more accurate now and I may reconsider.

[Claire]

Marina,

 

Milk thistle was recommended to me based on my adrenal stress test. Are there risks to it? I never took it, but have thought about it.

 

Wow, it sounds like food allergies are big in your family.

 

Re the milk, from what you say it might be worth trying a no milk week before the no screens week. When something is removed, sometimes the allergy goes away until daily use brings it back. Yes this is opposite of what I told Nancy re sometimes they react after reintroductin where they didn't react before. It seems contradictory, but I was told both could happen. Basically, removing it again gives a lot of answers.

 

Claire

[ad_ccl]

We got some test results back last night - it seems my doctor had ordered some food allergy testing as well, so these are not the results from the states - but a smaller list of foods. He came out very allergic to cow's milk and slightly allergic to soy beans. I am somewhat shocked but somewhat not. I knew what an improvement I have seen since taking him off cows milk - and having him limit soya milk to 2 glasses a day - but to actually get the positive result - it feels somewhat validating and makes me understand more his chronic cough he had all these years (that is gone now) I also remember reading I think from Claire that kids crave what they are allergic to, I wasn't so sure about this as my husband has the peanut allergy and certainly never craved it - yet I think back to my son's limited diet over the years, milk, milk and more milk, minigos, and more recently cheese strings - I was so happy he was eating something healthy so let him have 5 at a sitting if he wanted. He would also eat 4 minigos at a time. He had chronic ear infections as a 1-2 year old, when he also drank 8 bottles of milk a day. I am thrilled to have an answer - and look forward to the set of results out of the states. Does make life very complicated - no milk, no soya - what can this kid eat. Once I get the full list of foods I imagine I will start a new thread asking for advice as this is really new to me - all the snack foods he has have milk, bread does - yikes. I think I need a personal chef, (as well as personal housekeeper, life organizer, parent coach etc etc)

 

I have to thank this forum again, as I would have never thought of cutting out milk if it were not for the thread of food sensitivities and noticing milk was listed in almost every case. And I would not have know to ask about the food sensitivity testing either. While I knew taking him off cows milk helped so much, it does make things clearer actually having the blood work result. I always assumed a food allergy, particularly milk would cause obvious stomach upset, not tics!!!!!!!!!!!!!

 

So, Marina, I agree with Claire, try to take your son of milk for a week, as it will probably be somewhat easier than screens (although there is a lot of milk products in everything we eat I discovered last night as I went through my fridge and pantry) Ronna has talked about her son managing screens except if he has had milk. So I think it is all interconnected. We initially just took my son of drinking milk, and I did not let him have cheese, or pizza - but let him eat things with milk products. Now I will limit/eliminate that as well.

 

 

 

When we switched to soya I also switched my middle child, he drinks tons of milk as well, so had tons of soya - I did not limit him (also a terrible eater), he has been having diahrea since then - but no other symptoms of illness (20/20 hindsight) - so I wonder if he has an allergy to soya - it is Rice Milk for them all. The other thing of note is the baby who has always been happy, sleeps well etc. started getting up a lot over the holidays - seemed his stomach was gurgally - I realized it was when we switched him to homo milk - so earlier this week he went back on formula and was only up once last night with no stomach upset. He is also much more content through the day. I have been paying so much attention to my eldest that I have not been noticing the changes in the others.

 

The other thing I have noticed, not sure if I have already mentioned - but my oldest son has really started eating so much better - willing to try new things etc. This is all since going off the milk.

 

Thank you, Thank you, Thank you....this forum has changed my son's life!!!!!!!!!!!!!!!!

[marina]

Hi

[marina]

Hi all

I tried to post back a reply yesterday but an error in the forums database meant I lost it all.

Probably best as it was a rambling, confused post which is a great reflection of how I feel.

 

Alison what terrific news. It must feel great to have something to go by.

What tests were they as it will definetly be on my list to do?

 

Matt came home from his first day at high school worse. He brought it up himself and said it got worse when he was outside. Grasses???

As we talked about the day, he mentioned that he had an computer class and PE in the gym (fluro lights).

He didn't seem at all stressed, and came home excited about all his new friends, teachers and experiences.

HOWEVER, his favorite friend's dad apparently sells games and electronic equipment!

Also Paul commented that all the boys could talk about was games. (the boys are in the same class this year) He being more of a book worm was concerned. Me too!

 

The mum watch has shown me that he blinks much more when watching TV. Paul has also commented on the blinking, especially when Matt watches tennis(amazing that he noticed).

Matt and I had a chat, and he has agreed to another one week screen free which started last night, in order to have a define once and for all.

He was so great about it, and planned heaps of alternative activities, that I immediately doubled his pocket money this week with a further reward at the end of the week.

 

I saw your posts on dairy trial latter, but recently we had eliminated it for 4 weeks.

 

I'm also suspect of the combined supplement (few questionable ingredients) which we have now used for 8 days. Matt however wants to continue it for the screen trial so as not to confuse the issue. For the same reason I will for now keep the one glass of milk per day.

I read your posts afterwoods.

 

This morning I noticed him tic while carrying a heavy load of textbooks, so it could be more of a structure thing that the osteopath will help with. He is scheduled for a visit at the END of the no screen week, although I am so tempted to bring it forward.

 

I am so sick of what if it is this, what if that but know that with persistance we will get there.

 

Claire

Milk thistle I believe was a key supplement that helped me. I can't remember the dose, but it was practioner strength and combined with garlic. Previously I had been on so many vitamin and althernative treatments to no avail.

It works as a powerful liver cleanser/restorer but don't know of its role in adrenal function. I don't know of any risks associated with it.

 

Changing my diet was also a big key but it took ages to find out answers.

The WORSE thing I ever did was go to an allery clinic as an inpatient for 3 weeks in an attempt to get answers.

I wanted to settle this once and for all before getting pregnant again.

Filtered water only for 5 days, then testing individual foods one at a time. It yeilded no answers, and I came out reacting to everything, and taking well over a year for my health to get back to the level it was.

 

It amazes me that my health is so good now. It frustrates me that the doctors would never listen to why I thought I got better!

 

Our family history certainly points to Matt having food issues, and certainly his asthma, cough etc have all gone, but I do wonder if I'm over focusing on this. Time will tell, and I'm trying to stay open to all the information.

 

Marina

[ad_ccl]

Hi Marina,

 

That is great news that he is willing to do no screens - definitely I would recommend not going to the osteopath during the week - especially since that seemed to make it difficult to be sure of the results last time you did no screens. I know it is hard not to since you have had success there before - but just wait until the end of the week so you can see how the no screens alone does. Easy for me to say, I know, as his mother you just want it to go away - but you don't want him attributing getting better to the osteopath either then you will have no luck getting him away from the tv in the future.

 

Sounds like the lights is a big one -- the only thing that might mess up your no screens is the fact he is in a new school environment with the lights and computers. As you might remember my son had a terrible set back the first week back at school after Christmas holidays - in the end there were 2 factors that I now know for sure - the milk and the lights.

There are always so many factors at play - it is so frustrating!!!! What about pesticides outside?

Excellent plan on doubling the pocket money, my son got a daily reward of money and saved up for a new toy - he did not see the no screens as a punishment at all.

Sounds like milk is not such an issue for you as you have tried eliminating it before. Sounds like the screens/computers/lights are the key. Is he continuing to get worse on the supplements or has that leveled out or got better?

 

Good Luck, I am so glad your son is so willing to do the no screens. Look forward to an update.

[Claire]

Hi Marina,

 

Great news that you found a way for Matt to do this willingly. I understand why you waited for school (less free time makes it easier), but it is too bad that he is getting hit with the flourescent lights after what I suspect was a summer mostly without them (?), and of course mandatory computer lab. The computer work is not daily is it? You should definitely ask him and record if he has it each day.

 

I am sure you will want to throttle me a bit for saying this, but ideally it would have been better to do wait for week 2 of school to start, after you could see what the school environment did to his system first since based on day 1 it sounds like it may be aggravating. I remember Alison's son was doing great, then he returned to school and had increased tic reactions, but his prior baseline allowed here to isolate them. I might have done week 1 with the new school and the homopath visit, and then week 2 with no screens and no homopath visit.

 

But heck, you gotta go with when he is actually willing, don't you?!

Maybe you can encourage him to sit near the natural lighting of windows on his own this week (as Alison's son is doing) and to try to sit where he isn't facing some computer monitor that someone left on all day in the classroom. (I know they are tough not to zone into).

 

I wish you and he the best of luck. I just said a prayer for you that you figure this out.

 

Claire

[marina]

Hi

Claire and Alison

As usual great advice. I did think of that, but in two weeks they are off to camp, therefore even more waiting(not knowing if it was camp food etc), and plus the panic part of me wanting to do everthing at once is not totally under control yet.

The urge to book 3 sessions of osteopath treatment, stop the supplements and go back to revisit failsafe diet all at once is overwhelming.

 

With me under control, it was either osteopath now and wait another 3 weeks to start no screens, or take the opportunity while Matt was willing to go with it.

 

I held my breath while I waited to see him walk down that school path after school, and although things looked promising he complained that he felt worse. He immediately did the hot shower, followed by ice packs and felt some relief.

 

As I said this morning he did start ticing while carrying all his books to school. Could it be that this is what is aggrevating or as you the school enviornment.

He had no computer work today, and the rooms are quite bright with natural light.

 

It is now Friday night, and I had thought that if I see some improvement on the weekend, that I might contact the school to see what I can do about computer lab for next week. Not sure how to go on that one yet.

 

Matt however is coming home bright, very happy and enthusiastic. At the moment he is at the tennis court with his day, enjoying that sport is now OK.

 

Claire I'm so glad that your son is much better and thank you for your prayer.

 

Marina

[Claire]

Well, I think just 'sitting still' in the classroom for hours on end, after freedom of movement during the summer (even if some chosen activities are sedentary) can be hard on children with tic syndromes. Glad he is doing tennis.

 

Re the backpack, I don't know what to say yet, but keep an eye on it, e.g. if he is doing better on the weekend, then tics again when he puts it on on Monday. My son only ticced regular for a couple of months, but when he did, jogging and soccer (his two physical stresses) used to make him tic more. This disappear though with the change in screens.

 

I can see why you didn't want to wait 3 weeks--I wouldn't have either, no way, especially if he finally agreed to do it, it is the best time to break the habit, when other changes are going on also.

 

Plus I know also how many conversations revolve around computer/video games, it is amazing to me.

 

I hope you see improvement over the weekend! Please keep us posted.

 

Claire

 

ps How do scientists ever truly do double blind studies? Way too many variables.

[marina]

Claire

 

Just on finishing 3 days of no screens.

No great improvement so far but after reading Susan's post, it is still early days however some interesting observations.

 

Claire, you have a way of reading my mind, I'm sure.

The last few days I've noticed that whenever Matt is more physically active his neck tic is worse.

Yesterday he had basketball, and the tic increased. I put it down to the bright lights or competition. However this morning (Sunday) we went for an hour walk and again his tic got worse.

 

To me it seemed that everytime he is moving, it's as if his head is unsupported, and the neck tic starts (no other eye blinking etc). His left shoulder is obviously much higher as well. To the point where I feel like pushing it down.

While sitting, reading, or playing a board game, it's far, far better and sometimes gone altogether.

 

I really don't quite know what to make of it, and was surprised when you also mentioned that your son would get worse while playing soccer or jogging. As I said you seem to read my mind.

 

Also a boy in the next street who is the same age and has previously been diagnosed with Tourettes, went to see our osteopath after a friend told her of our success.

Apparently she was happy after her visit, and her son said he felt much better. Don't know any other details, but our common friend is inviting us both for a coffee so we can meet.

Comparing notes will be interesting.

 

Will keep you posted.

 

Marina

[Chemar]

Marina

 

my son's tics get so bad with PE or other organized sport or excercise that he now has exemption built into his 504.

 

He does fine when working out at the YMCA or doing excercise on his own, but really just cant do any "formal" excercise. He is also ok playing golf or tennis.

 

Our integrative doctor once mentioned that many kids have increased hyperactivity and other issues after school sports or outdoor PE, and feels it may even be associated with the pesticides and other chemicals used on sports fields

 

whatever the reason, it just got so bad for my son that we had the exemption logged back in 6th grade already.

[ad_ccl]

Hi Marina,

 

Thought I would also add, that my son's tics increased when playing soccer, hockey, basketball etc - I had thought it was more possibly asthma related as it was the cough that seemed to become more obvious. Good job on working to figure out the triggers - hard work with so many things at play. So nice that you will have a new friend/support - it is so great to know someone going though a similar experience as you.

 

My son continues to do amazing - pretty close to tic free, and it seems even while watching the LCD the eye squints are lessening. We are now onto the next leg of the journey in going milk and soya free - never did I realize how much milk and soy is in our everyday food. It feels a little overwhelming right now - but I am sure in time it will become second nature. I feel so validated that we have proof of a clear cut allergy that has been taxing his immune system all this time. His chronic cough (tic) started at 3 - followed by a few other transient tics - eye squints, rolls, sniffs, nothing anyone noticed or commented on. I have been assuming that he had some infection since then but now I realize it was the milk allergy causing these tics. The more I read about allergy's the more amazed I am. There was a site I found where a 6 year old boy drew 6 pictures of the same thing, the first 5 minutes before eating breakfast (which included food he was allergic to), the first picture was very good and showed a boy with a baseball hat, clothes, hands, facial features etc. each picture became more simple, the final picture seemed to be drawn at about an age 3 level. I am going to take it in to show my son's teacher. Of interest is that since going off the milk my son has become much more interested in drawing and his fine motor skills have improved. Tonight he did a page of math questions and all the numbers but 2 correctly written - a few weeks ago, while he got the answers correct the numbers would almost all be backwards. I wonder if there is any correlation - his writing has also got much neater and the teacher commented last week on how much work on a story he had completed.

 

I did have a question about the result of the IGg test - we still have not got the results from the States - but the one we got last week listed his result for cows milk as 39.4 U/ml with the word ELIMINATE next to it - normal is 0-8, borderline is 8-12, positive is over 12 - I have nothing to reference this to - Claire (or anyone else) perhaps you could let me know if this is very high - or do some come back at much higher? Also - in trying to research this - it seems some say that he could outgrow this but other's say since he had not outgrown it by 5 it will probably be a lifelong thing. Any knowledge/experience with this would be greatly appreciated.

 

Thanks,

[Claire]

Alison,

 

One IgG test we took also had positive if over 12. That score is certainly is more than borderline.

 

As far as permanence, that is the million dollar question. Most allergy places say eliminate for 4-6 months then challenge with it (eat it), look for symptoms over an entire week from 1 day of consumption, and if none, then rotate in every 4 days.

 

Some think clearing yeast and/or healing the gut will eliminate the allergy. Some do energy methods. Dr. Rapp discussed giving small doses (injections?) do build up resistance, just like allergy shots. Pfeiffer sometimes does MT promotion (search the archive here on this discussion). Some take Houston Nutriceuticals enzymes (AFP peptizade). That is what we do. We avoid milk, but I give it to him when he has cheese. I can't say what it does for sure, because I never elminated cheese with the milk. Just too much! (given I had to eliminate 20 foods at the time, including milk, wheat, apples, peanuts, almonds, bananas, corn, eggs....).

 

So this is the focus of my current efforts. Retest with ElisaAct--since he was sick and on histamines, I had to put off the retest). Heal his gut (he still has yeast), see if Pfeiffer will do MT promotion (he is on the phase one for zinc now), and in the meantime avoid milk except cheese--though I would REALLY like to see what happens if no cheese--actually he hasn't had it in 3-4 days coincidentally, but who can tell anything when they have been sick and are not in school. I will see if I can somehow drag it out for a whole week without calling attention to it--wish me luck.

 

Dr. Rapp discusses the handwriting change due to food allergies also. It is interesting that you see it directly. Amazing with the math. Wow!

 

Yes, the 'tests' sure help. I found that teachers/caregiver took formal 'tests' more seriously, as did my son and husband! Especially corn--I KNEW it in my gut, but I needed the test for my son. Plus I hated all the guesswork.

 

So great to hear how well your son continues to do. I do am wondering about Marie, and Maureen/purplepoodle, and of course Marina who is trying something new.

 

By the way, my son's excema greatly improved this week--not sure if it is 'no cheese' or the antibiotics for his sinus infection--they prescribed this once before for it a long time ago--it helps the infection (it gets pretty bad). Wouldn't it be cool if it stayed away?

 

Claire

[ad_ccl]

Well, we got the testing back from the States. It also came back to eliminate all dairy - but also to eliminate gluten/wheat - as that tested just as high as dairy, also to eliminate eggs. Soy seemed to be ok - I am a little confused - while the Canadian test did test for wheat it came in at a 2 - normal range is 0-8, eggs white/yolk were 1.5 and 3. and soya bean was at 8.5 - and we were to reduce ( I decided to eliminate this too so not to tax his immune system in any way). I have not seen the hard copy of the new results so do not know what the ranges are.

Why would one test show wheat and eggs as ok and another show them in the eliminate category. This is going to be really hard!

 

He is doing incredibly well with the elimination of milk -he is like a different child. Last week while others would see him as tic free I still saw very subtle infrequent tics - I think this is the first day I truly have not seen a single tic. ( he has not watched any tv today - that usual causes some squints). It still amazes me that only a month ago I thought we would have to go to Chlonidine to deal with this - and in the end it has been a food allergy all along taxing his immune system that was then put out of whack with the strep infection. Had we not discovered this he would have continued to be a challenging child to parent and he would not be excelling the way he is at school. Not that parenting any child is without challenges but things go so much more smoothly on a daily basis now. He listens well and is not complaining about not being able to do things well etc. The teacher is amazed by the changes in his concentration and the amount of work he is completing.

 

I no longer feel stressed all the time wondering what his tics will be like when he wakes up, comes home for lunch or after school, and I don't feel the same need to spend every free moment searching the internet for answers because I think we have found the answers ( fingers crossed) in large part due to this forum. As I have said before food allergies would never have crossed my mind as the cause of my son's tics.

 

There has definitely been a silver line to this PANDAS experience.

 

 

The new chapter begins...

[Claire]

Alison,

 

I had this feeling gluten was going to be an issue--milk/casein and wheat/gluten are the most common.

 

Gluten issues can affect growth--you may even see a growth spurt with elimination.

 

I recommend get Gluten-free pantry sandwich mix and a bread maker. The ONLY gluten free bread I like. Easy with the cheap bread maker.

 

Claire