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[Claire]

Hi Alison,

 

One CRT TV exposure symptoms for my son often lasted for a full week, so this is possible.

 

Certainly many here comment that their children's tics get worse with cold. Plus with the wheat removal... I just don't know. Too many factors. If it was the TV, by next Tuesday, they should be gone. If it was something else, it could continue.

 

Also, with continuing antibiotics, I would try to do the spit test weekly to make sure that he hasn't picked up a yeast infection (make sure he gets a large amount or it will float regardless).

 

My son has now been a week without cow cheese (first time I have pulled this off). I will keep it going and see how things goes next week. He has been having too many corn products (known sensitivity), so I hope this doesn't offset it.

 

Cool about school. Completely believable change--your son is clearly very responsive. That is wonderful. Did she notice more improvement since the wheat is gone?

 

My advice on treats is just to get a Betty Crocker cookbook and use the gluten free flour recipe I posted for their sugar cookies and toffee bars. Look up gluten free zucchini muffins on the internet--they are a big hit.

 

I saw your posts on the GF board, aren't they great? Glad I can use a bread mix in the US--too much work finding a bread recipe!

 

Claire

[marina]

Hi Alison

Keeping my fingers crossed for you that it is just a tempory cold setting things back for now.

At the back of my mind, I do think that perhaps by cutting back all dairy, gluten and eggs, maybe he is eating or drinking more of other substances which are affecting him. eg: a lot more juices which have concentrated amounts of natural food chemicals.

With Stef, it was definetly salycilates, amines(which are most of the foods on Bonnies list), msg, preservatives etc.

Milk did not affect him, and although I think wholemeal wheat products affect him, he is OK with white bread. Many in failsafe found similar results. A huge problem though was a preservative in bread commonly used in Australia.

 

Stef with these chemicals would pretty much be a textbook model of the reactions you described in the book you posted about.

You could see the enormous changes in his writing, pictures, etc.

We came across a school photo of when he was about 8, and the pale face, with black rings around the eyes, with a sullen expression was quite a reminder of the changes that have taken place since.

 

I hope it's comforting to know I my dairy allergies did improve, and that your enormous workload may one day reduce.

At around 12 I would get enormous hives all over my body every morning at about 10. So bad that I often couldn't open an eye, or walk because on the swelling under my feet.

The attacks would generally last 2 hours, after which I would be exhasted for a few hours latter.

Strangley I would also get the hives if I was cold. Even with swimming in the Aussie heat, I would have to quickly dry off, or I would get hives under my wet bathers.

 

An allery specialist worked out the milk after a one week elimination trial, however it didn't show up on any scratch or blood test.

I think I did have a series of injections which did improve the milk allery.

I now have no problems with dairy, but am careful not to totally overdo it.

 

With Matt it is looking like photosensitivity is one of his main triggers, but I have been careful limit dairy and eliminate artificial ingredients while on the trial.

I know that a McDonalds meal on our way to our holiday set his tics off for the rest of the day!

I do suspect that with Matt, salycilates are oK but that amines (foods on Bonnies list are suspect)

 

He is on day 10 of no screens and he has improved about 80-90%

Yesterday at Basketball, he did tic, but only for 20% of the game rather than 80% of more prominent tics the week before.

 

So far the results are amazing, but will have to work out a screens testing plan soon at his insistance so that 1. He is totally convinced that he is affected, and 2. To work out if he can manage alternatives like LCD screens. I think he wants the trial to fail as much as I want it to work!

 

Marina

[Claire]

Congrats Marina,

 

I have been anxious to hear more from you, this is great news. I am soooo happy to hear you are seeing 80-90% improvement!!

 

 

Good luck going through the next steps. I hope Matt does credit the screens over time. I know it took time for my son to totally accept the correlation too. If you had the funds/insurance, you could ask a neurologist to do a sleep deprived stroboscope test on him--I am sure that that would show up.

 

Maybe you should try moving to an LCD screen right away, then you and Matt are both rooting for the same thing--the tics to stay away. But as I have mentioned (and Chemar also) the type of game does matter and the LCD generally doesn't mean unlimited use--at least until other issues are resolved. Of course the other option is to go back to unlimited screens for a couple of weeks so that he can see them return full force by then. What I get wary of is a simple trial--for some it sets them off for a week, for others, it is like an allergy bucket where it needs to build up before setting off tics.

 

My tag line here is always: Once you ID photosensitivity, I recommend testing for metals and pyroluria (I forgot if you did this), yeast and vitamin deficiencies. We found that it doesn't improve unless the immune system is repaired. This saves you/him from a life of just avoiding triggers.

 

I suspect that this new baseline will let you finetune more over time and identify secondary triggers--if Matt continues to cooperate. Have you ever asked him: If he did believe it, would he choose the screens and ticcing over no screens/restrictions and 80-90% reduction in ticcing? Just curious!

 

By the way, is the basketball game outdoors, or in a gym with flourescent lights?

 

Claire

[Guest Guest]

Dear Claire

I haven't got back to you, waiting for a time to give you a DETAILED description of what's happened and what next.

Until now busy with work, keeping Matt occupied and typing all his assignments etc.

Also Paul busy on the internet, downloading songs and articles for Matt to read.

Now not the time, because I'm at work, but hopefully tonight.

Just wanted you to know there is no way I haven't thought of you and all your wonderful help each and every day.

 

Marina

[ad_ccl]

Marina,

 

This is such amazing news from you- 80-90% improved. How Fabulous!!!!! Is he still on the vitamins that you thought were suspect?

Thanks for the info on your dairy allergy - sounds horrific - so glad things improved over time. We are hoping for the same for our son. Our current plan is to be glutten free, dairy free, egg free and very reduced soy - for one month and see how he is. I imagine we will stay off dairy long term but may try to reintroduce gluten on a rotation diet. It is easy to live without cows milk and milk products and even eggs, but I am finding it a real challenge to be gluten free. It was interesting as I was talking to my son's doctor a few days ago I was asking if we really needed to do the gluten as we are sooooo happy with how he is doing off dairy - he seems so perfect - he made an interesting point, that we may think he is perfect but there could be even more perfection up ahead. Meaning, we have never seen him off all foods that are bothering his immune system. Maybe once off the gluten he will not react to the CRT screen the way he did at the barbers - and not have an increase in tics when sick ( although they have been slight the last few days - and really nothing to complain about) I am actually so thrilled that he is showing REAL signs of an illness. He actually seemed better through the day - I don't think I have seen any tics since mid morning, and it was an eye tic he had. I probably saw it twice today. This is so much better than the months of seeing it once a minute at times.

 

I have been spending all my time baking over the last few days - with some success. Claire, I agree - baking with the rice flour alone leaves a terrible aftertaste - although some cookies I made today he liked, I thought they were terrible. I have your flour blend on my fridge and plan on making some cupcakes tomorrow. By the way - how do you store your gluten free bread - is it safe on the counter for a few days? or only in the freezer? Mine got hard in the freezer and tasted bad although had been good when it was fresh.

 

When I have a few minutes I will add specifics of the results from my food sensitivity testing on that thread.

 

He is tolerating the LCD even better now - he has been allowed to watch his favorite channel and there has not been any increase. Perhaps it is the result of the gluten not aggravating his immune system?

 

My husband and I are going to do the testing as well - hopefully this week if we can fit it in. Some of my research talked about chronic headaches and fatigue a result of allergies - I suffer from both, although it could be for the obvious reason, lack of sleep with three small children, stress over this experience for the last few months etc but it is nice to know a test is there that can tell you if something you are eating and think is good for you is actually not being tolerated well by your system. I keep saying it...but I continue to be amazed that milk was such a problem and rated so high on the allergy tests - and he had no typical symptoms that would tell us milk was a problem.

[marina]

Hi Claire

 

I can't believe it. I've had almost finished a very detailed post to you and with a flick of a button lost it all

 

Will try to start again.

 

Firstly, yesterday and today (Monday and day 11) no tics visible!!!

We have not been able to achieve this before without the osteopath treatment or as an unexpected result of the anaesthetic after his operation.

So really congratulations to you Claire for all your research and encouragement on the photosensitivity issue.

 

Even Matt is admitting that the trial worked, and has moved on wanting to focus on how much he can tolerate.

He will no doubt strech his tolerance level to the limit!

Claire I haven't asked him the tic vs restriction question, and won't.

 

I handled his reluctance and dismay by trying to be totally honest.

The positives were that at least we will know the answers to why he tics, and then work out solutions so that he is not so vulnerable. I promised him it would not be a cause of no screens forever. I fully intend to keep my promise.

 

I was also quite blunt, that this was a big health issue that we should try our hardest to resolve together, otherwise the problem could escalate and that alternative treatment suggested by doctors could possibly involve drug therapy.

 

I must admit that I am so proud of his tremendous effort at not only sticking to no screens, but also to diet restrictions in the face of enormous temptation.

eg: the teachers have been rewarding him with lollies etc for great work. He doen't want to say he can't accept, so the lucky receipiant has been his brother, who strangley enough is getting very moody lately!

 

During the trial I tried to keep all other variables stable with a few transgressions.

eg: Food. Cleaned up his diet, Therefore no artificial flavours, preservatives etc..

Milk limited to about 1 large glass per day, and limited any high natural chemical foods as per failsafe guidelines. eg: Although he ate tomato slices no concentrated tomato pasta sauce.

 

Although these restrictions prior to no screen did not eliminate tics, I have noticed that sometimes food aggrevates tics. eg McDonalds with chocolate thickshake obvious trigger. However on Day 4 of our beach trip(Greatly reduced screens) he improved greatly even with a nachos meal the day before and a lolly feast all morning. So go figure.

 

My thoughts are that he can tolerate salycilates, but may react to amines(foods on Bonnies list) and some additives such as flavor enhancers.

Also removing the primary trigger, means the bucket not so full.

 

Supplements. Although I meant to continue the Muscle-eze, I must admit that I have missed giving it to him on numerous occassions.

My subconscious trying to eliminate anything I may be wary of. Not very scientific, but totally understandable to other mothers.

Latter I wish continue supplements, but will purchase the various vitamins individually, and introduce slowly.

Still his tics were present before and after the supplement without significant improvement until we started no screens.

 

Exercise

Big improvement in his previous exercise trigger.

On Saturday during basketball, tics improved by about 80% from the week before.

Yesterday he played golf, and no tics at tennis today.

Last week tics were triggered during the tennis match.

 

Osteopath

Other than our last visit, osteopath treatment would result in immediate massive improvement lasting 7-10 days before symptoms gradually returned.

I initially blamed the supplement for the lack of improvement on our last visit, but now believe that the cause was that the osteopath focused more on the tightness in his back rather than neck. Usually the improvement is instant in that he walks out of the room tic free.

I'm glad we postponed our visit, or it would have been impossible to identify lights and screens.

 

Claire seeing that the osteopath and anaesthetic both worked for Matt, could it be that the mechanism for some or many tic symptoms is a continuous contraction and tightening of muscles , as a response to not being able to handle the flicker, graphic visual input, which then in term aggrevates key nerve endings???

 

I also find it interesting that the foods Bonnie mentions are all high in amines. In failsafe these are most commonly reported as evoking the angry aggressive response vs silly behaviour. Of course other foods such as dairy or gluten could also be implicated

Matt does not display any angry aggessive response but I wonder if they have the effect of tensing his muscles.

Only my thoughts.

 

What next??

Wasn't sure whether to test all screens full bore to see provoke reaction or start LCD screens first.

Like you I was worried that if it was a build up of several weeks, maybe Matt would loose the connection and blame something else.

Went through the pros and cons with Matt.

He said he couldn't stand a full detox after unlimited screens over a few weeks, so we will start more slowly by introducing LCD.

Matt wants a detailed plan of action.

eg: 1.Reading, writing and watching movies on LCD screen for ? hours for how long.

2. Games on LCD

3 Normal TV

4.Movies.

 

Any ideas? Matt would like it a little on the liberal side.

 

Doctors appointment in March

I will keep the appointment at the Royal Children's Hospital in March armed with my results so far.

Hopefully they can assist with further allery testing and pyroluria.

The worst they can do is send me away and classify me as a overobsessed mother. Been there before, and like water off a ducks back.

 

 

Again thank you, and I think we can now safely add to success list!

 

 

Alison

 

Sue Dengates cookbook has this gluten-free flour mix that doesn't contain soy.

1 cup brown rice flour

1/2 cup potato flour

1/2 cup tapioca flour

2 ts xanthan gum from health food stores.

 

Substitue 1 cup of gluten-free flour mix plus 1 sbsp rice bran for one cup wheat flour.

For self-raising add 2 tsp gluten-free baking power.

 

I haven't tried it, but if it's in Sue's book I guarantee that many have with good results.

 

Another treat that I make on a regular basis is fruit crumble.

I use fresh or tinned pears and often mix other fresh fruit such as nectarines etc.

For crumble mix I use one cup of oatmeal and wheat flour combined (you could use gluten free), 2/3 cup sugar, & two tablespoons dairy free margarine (margarine without preservatives)

Bake until topping golden.

Great packed in containers for school lunches.

 

Don't envy you, but keen to see your progress

 

Marina

[Claire]

Marina,

 

That is awesome news. I am so glad that your son agreed to extend the test. Yes you should be proud of him.

 

I understand your not asking the tics vs computer question, it implies a choice you may not wish to imply.

 

Okay, my thoughts:

 

1/2 hr LCD every other day then every day in a well lit room. Remember, only a 15" monitor--hopefully you can buy the computer/TV monitor combo such as Samsung makes. My middle school son brings this on overnights and the kids say 'cool' because it is so high tech looking.

 

Start with normal TV or a static game, not a rapid action game. Does he like RollerCoaster Tycoon, SimCity, the Sims? Or those conquest games (I haven't seen them, but assume they are static).

 

For typed schoolwork, I like the Alphasmart. You type in in with a tiny LCD screen and so it doesn't count as computer time for our son. A gray screen. Really lightweight and portable (Chemar uses it for her son). Then you plug it in to a computer and transfer it to a word processing program and can make it neat and pretty. This will mean you don't have to type all his homework.

 

If he has a reaction, see whether skipping a day is enough to get him back on track. I think an Osteopath visit would be great to bring his baseline back to start over with the test. For us, it was a bummer, we had to do a no screens week each time to clear his system.

 

Really though, I keep saying: we went a 18 months with virtually no screens at all ...it took us a while to figure out that LCD's didn't flicker--my husband's brainstorm which I then researched on the photosensitive epilepsy sites to confirm. Oddly they didn't mention it when I first did my research, maybe because it is newer technology. But he continued to be sensitivity until we treated the mercury, deficiencies, pyroluria. (For Heather, yeast reduction got rid of the photosensitivity). Now he has no limits to the amount of LCD viewing he can have and has done 4-5 hours on rare occassion (e.g. when he was sick for days on end). Otherwise, I limit to 2 hours on weekends/vacation and 1.5 hours on school days--he gets 30 minutes at school, so it is still 2 hours. I believe this would not have been possible without the interventions we did with the immune system.

 

But initially, it was lower than this, maybe 30 min a day. You just need to keep reminding him of the cumulative affect. e.g. 2 hours with no reaction one day, doesn't mean he can always do that!

 

I am glad you are moving straight to the LCD. In a way I hope the reaction if any is immediate, because you can much better assess his limits than with a cumulative effect, especially since for us it was often delayed until that evening.

 

So, ideally 30 min/day everyother day for a week, then 30 min/day, then 45 min/day....I am convinced that the type of game will make a difference for most--e.g. whether you are effectively reintroducing flicker vs just graphics. If you find a level that works, then later he reacts, then just do the osteopath or eliminate for a few days, and start at a lower level.

 

Claire

[ad_ccl]

Well, things continue to go well for my son - a slight increase in subtle tics this week - probably due to an exposure to a viral illness. My middle son has been very sick all week - with a high fever that started on Saturday and upper respiratory problems that appeared suddenly on Monday - resulting in an overnight stay at the emergency. He is on the mend, his fever was not spiking as high today and he was seen again by the doctor yesterday. The baby is also starting to come down with something. The teacher noticed a change my oldest sons concentration on Tuesday this week and I felt he looked pale that morning. I kept him home from school on Wednesday as he was grumpy the way he used to be - the teacher today said he was much improved - she did not notice any increase in tics - I of course notice them all. Tonight he still had subtle tics - but was not grumpy at all, so with hope the tics will go away in the next few days - again they really aren't bad at all.

 

I do have a question related to my middle son. We did the ELISA testing on him as well - he is HIGHLY allergic to way more stuff than my oldest son which explains a lot of stuff from his early years ( early, hahaha - he is only 3) I won't go into tons of details about his medical history - but he did test highly allergic to dairy -which explains so much about earlier stomach stuff - we even had a barium swallow done on him when he was two as he used to go up to corners of tables and push his stomach into them - and during the night have me push into his stomach. It all stopped when I took away his soother so I put it down to him having sucked in air with his soother - what I did not realize is the day we took away his soother he also refused to drink from a bottle anymore so did not drink milk for several months - it was also when he started to eat more of a variety of foods, he went back to eating very limited foods around the time he started drinking milk out of a cup. 20/20 hindsight. He also tested very high for Barley, Buckwheat, Durum Wheat, Wheat, way higher than my older son- this test did not test for gluten alone. The doctor wants to test him for Celiac - he also wants to test my older son too but not now as he is doing so well of the gluten and to do the test they have to be eating gluten for a few weeks. He tested very high for soy - which explains why he had severe abdominal issues over the two weeks that we switched him to soy over Christmas - again 20/20. My middle son has no tics, no behaviour concerns, no social concerns - just a regular kid with a terrible appetite, which is really the only reason we did the elisa testing, we had found my older son started eating so much better once off the offending food. We have clearly noted the baby as well has problems with cows milk - he is back to his happy self, sleeping through the night once we took him off the homo milk that he started on when he turned one.

 

 

Just wondered if anyone else had ELISA results that were concerning and then went ahead with the celiac testing and found they did not have celiac.

 

I remember in one of my early posts saying something about how everything happens for a reason but I could not figure out what the reason for this could be. Now a few months later I could list several silver linings to this cloud called PANDAS. I would never had known about any food issues with my kids if not for this experience, and to think they could have something as serious as celiac be undiagnosed is scary.

 

Thanks in advance for any info on celiac disease.

[Ronnas]

Alison,

 

I is great to hear your son is doing well. On braintalk there is a Gluten Sensitivity/celiac Disease board. Their useful website's sticky is great and "jcc" is there and she is extremetly knowledgeable about gluten issues. I would post your question there.

 

http://brain.hastypastry.net/forums/forumd...splay.php?f=141

 

Take Care,

Ronna

[ad_ccl]

So....my biggest fear has happened. My son has a strep infection - or suspected infection. As I mentioned last week my middle child was very sick with a high fever and breathing difficulties - he was in hospital overnight. My oldest child started to get grumpy mid week last week and have subtle tics, things like humming when eating, taping his toe, drumming his fingers, nothing too concerning - no eye rolls, jaw clicks, etc etc etc - none of the horrible one's he had in the past. On Saturday he woke up with a fever of 104 - he was weak all weekend, but giving him medicine would bring down his fever. His tics were stable - no increase from last week - (although prior to last week there were no tics) He watched tons of LCD tv all weekend and there was no increase in tics either I am happy to report - he no longer does the eye squints when watching the LCD the way he did at the beginning. Monday morning he complained of a sore throat ( he had also woke up during the night complaining of a sore throat) and I did not want to take any chances so took him to the doctor. His throat was very red, and his lymph node on his neck was huge - the lump on his neck had been large since about age 3 - and only went down significantly when we took him off the milk and gluten. ( we found this very interesting) We noticed the lump get bigger last week. So, luckily his tics have not increased at all - they remain very subtle and he has been put on the full dose of antibiotics. I am hoping we have caught it in time but will probably worry for the next couple of weeks as often the explosion of tics occurs one to two weeks after a strep infection. Is this usually after an UNTREATED strep infection? As our experience the first time was that he had had strep at least a week before the onset of symptoms - looking back we remembered he complained two evenings in a row of a sore throat - but did not complain again. We just forgot about it.

I am hoping by treating it he will not have to suffer through what happened in August. It does make me question the use of the prophylactic antibiotic, I already knew some of the research on it but did not want to take any chance of another strep infection.

 

I will keep you posted with I hope only good news in the days to come.

[ad_ccl]

Thought I would post an update. My son's fever and sore throat lasted about 3 days last week and then he had what presented as a regular cold. All symptoms he has never shown before so I am hoping that is a good sign. His tics have increased over the last few days - still nothing like August but he is having a pretty constant hmm, sound - sometimes every 5 seconds, although it is not very loud or obvious and occurs mostly when he is eating. There have been a few other tics I have noticed but nothing regular and mostly vocal. The lump on his neck has decreased in size probably 80%. The other things we have noticed since the strep throat which has been very obvious is an incredible deterioration of his handwriting. His spelling is very poor as well ( although he still does write phonetically a lot of the time) his letters and numbers are all backwards. I had posted a few weeks ago about how much better his handwriting got after going off dairy. The other thing is that he is complaining of joint pain, I read the other night that this can occur with PANDAS - I had not read that before, looking back to August he was complaining of joint pain then as well but I assumed his legs and arms were just growing as he was going through a growth spurt. This has been upsetting to watch as he was doing so well, but I still feel very positive that his reaction has been nothing like the first time and I just pray that the explosion is not around the corner. I also feel like we are still on such a good path.

Yeast is an issue that keeps coming up over and over on this forum- I decided to do the spit test this evening and his spit was very stringy immediately - I am not sure if the test is accurate in the evening as I seem to remember being told to do it first thing. It would make sense that yeast would have become an issue since he has been on antibiotics for 6 months. We started using probiotics only at the end of December. Again, probably the obvious that I somehow missed.

His behaviour has been quite stable, it seemed to be worst the days just prior to the fever. He did say tonight that his "habit" that is pretty regular right now does not really bother him except when he is at school as he finds it hard to concentrate and learn. I wish this were not happening to him!!!!!

[SDK]

Hi Alison,

I always find interesting to read your observations as both our kids’ symptoms started with strep, and we are trying similar things to help them. Yesterday, I showed your e-mail to my husband to further support my claim that hand writing issues we had last year were associated with his strep and tic issues.

 

To sum up, here is what we have tried so far:

1. Nov-now: NO Artificial colors, flavors, preservatives (we have been very strict about this)

2. Nov –now: Dairy-free (we have been fairly strict, but every week there are one or two occasions where something that has dairy is consumed, e.g., a bagel with a bit of cream cheese)

3. Nov-January (Bonnie Grimaldi’s vitamins – half recommended dosage). I took him off in February because I wanted to test for vitamin deficiencies. We are restarting those as we are waiting for results. We have not given any fatty acids. I tried to start a few times but it seemed to me that they increased tics.

4. Watching tv-playing gameboy (no more that 30 minutes a day).

 

Change of symptoms:

1. In September/October we had two strep infections. We had tics (eye blinking, head nodding), fears, anxiety, hyper behavior, mood swings, aggression, silliness, hand writing problems, lack of focus.

2. November/January. Minor tics (some head nodding, but mainly nose twitching). Only occasionally hyper and silliness, and lack of focus. This was despite the fact that in December there was another strep incidence. Hand writing progressively improved, ended up being nice and neat.

3. Since Mid February tics increased and new tics came up (a lot of nose twitching, making wrinkles in forehead, smth funny with tongue). More erratic on being focused, more irritable, and tries to irritate sibling more often.

 

One thing I should note is that there might be a correlation with tics and damp days and tics and exercise (eg playing soccer).

 

What vitamins have you being trying?

Overall, do you think the vitamins, diet, tv restriction have made a difference? Or, do you think the most important thing is if there is a (strep) infection or not?

 

SKe

[Guest Guest]

Hi SDK,

 

Thanks for sharing some of your experiences. It is always nice to hear from someone going through the same thing. We do seem to both be on the same path, trying the same things.

 

With your son's strep infections - how long did the symptoms last? How long was he on antibiotics? What kind of antibiotics was he on? Is he on a prophylactic dose? Was he tic free between the infections?

What do you think is causing the increase in tics since mid February? another infection - viral or strep?

 

I am thrilled you have seen such improvement - and hope the increase is short lived - I feel very hopeful now that I know tics can decrease to non existent as I have seen in my son just before the recent infection - I had such a fear that there was permanent damage done to his brain and that he would never be tic free.

 

The vitamins we are doing are a multi, B Complex, EFA, Cal/MAg - and probiotic. We started the EFA very slowly - working our way up. I also felt there may have been an increase in tics initially when I tried several at once.

 

To answer your question about whether I think vitamins, diet, no tv etc have helped....YES, without question. The changes started to be significant only after we started on this alternative route. Initially the antibiotics did reduce the tics to a minimal amount but as I have said each time we went off them another increase would occur within days and the antibiotics seemed to have less and less effect with each infection. He was never tic free the way we have seen since January. The teacher has been amazed by his concentration etc. The tv was definitely a big one for us, and he can now tolerate LCD but still has tics if he sees a regular tv - although not at all to the degree they were. Photosensitivity also became a problem so lighting in school and stores. I really think this became a problem due to all the antibiotics etc. I think they depleted him of something that then caused this reaction. Just a hunch at this time. But he had not been photosensitive prior to this PANDAS. A big change with vitamins was his increase in sleep, and for a kid with an auto-immune disorder one could only assume more sleep would only help his body heal. He was a terrible eater and I am sure malnourished in many ways. Going off dairy was huge for us and ultimately the ELISA test showed he was highly allergic to milk. Since being off milk his appetite has increased and he is eating so many new foods - all healthy.

I think ultimately the strep infection - and viral infections ( any attack on the immune system) at this point is going to be a trigger regardless of what other things we are doing, as seen in the recent weeks with my son. But I do think he has tolerated the infection so much better than he would have if his body was not stronger due to the vitamins, extra sleep, as well as the allergic food upsetting his immune system - so I think it is hard to separate the two - I do hope that ultimately as my son's immune system continues to stabilize he will be able to tolerate a step/viral infection without any tics. From what Ronna has said her son as time went on managed any infection better each time, and infections became further and further apart.

 

I think an important question for us to ask ourselves are why are out kids getting so many strep infections? Your son has had several over the last few months which is more than the average kid. I really think it is all tied into their weakened immune systems and that once that is healed they will not get the infections as often. I hope so anyway.

 

Just to update - my son's tics continue today - can't really say they are better or worse. His teacher did note that he is having trouble focusing which is what is expected. She also noticed the handwriting deteriorating. She only noticed the tic when they were reading as the room was quiet and it is a vocal hmm tic. She continues to be so supportive. My baby continues to have a high fever - 7 days now - I think I maybe had an hour of sleep last night - I am so tired! - back to the doctor today - his ears, throat and chest were all clear, we even did an x-ray to be sure. Now my doctor wonders looking at the fact all three of my kids have had this high fever thing then going into colds that ultimately my oldest may not have had strep but this virus that is going around, which could explain why his tics are not improving on the antibiotics the way they should. His strep test had come back negative, although his throat was red and sore and he had the high fever. The doctor said it could have been a false negative.

 

Off to sleep.... I hope

[Guest Guest]

Hi Alison,

 

see below in CAPS:

 

With your son's strep infections - how long did the symptoms last? How long was he on antibiotics? What kind of antibiotics was he on?

THE SYMPTOMS STARTED IN MID SEPT, HE WENT ON AUGMENTIN INITIALLY (WHICH DID NOT CLEAR THE STREP), THEN ON CEFZIL (WHICH SEEMED TO CLEAR IT). THE MOST SEVERE SYMPTOMS LASTED UNTIL MID NOVEMBER; I COULD NOT EXACTLY SAY IF THEY BECAME BETTER ON THE DAYS HE HAD ANTIBIOTICS. IN DECEMBER HE TOOK ZITHROMAX FOR ANOTHER STREP INFECTION, HIS SYMPTOMS THEN WERE MINOR.

 

Is he on a prophylactic dose? NO

Was he tic free between the infections? ON A FEW DAYS, BUT ON OTHERS THERE WERE VERY FEW MINOR TICS. IT WAS ACTUALLY NOT THE TICS THAT BOTHERED US SO MUCH BUT THIS UNBELIEVABLE PERSONAILITY CHANGE AND THE ANXIETY IN SEPT, OCT.

What do you think is causing the increase in tics since mid February? another infection - viral or strep? I WISH I KNEW. WE ARE OFF FOR ANOTHER STREP TEST THIS MORNING. HE WAS DXED WITH SINUSITIS TWO DAYS AGO BUT THE DOCTOR SAID HE BELIEVED HIS SINUSES WERE ONLY INFLAMED, NOT INFECTED. SO WE GOT A NOSE SPRAY FOR A FEW WEEKS, NOT AN ANTIBIOTIC.

WHAT MAKES ME SUSPICIOUS IS THAT DAY BY DAY HIS MOOD DETERIORATES EVER SO SLIGHTLY AND SIGNS OF EMOTIONAL LIABILITY ARE CREEPING UP.

sdk

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Hi Sdk,

 

I realized just after I send the message yesterday that you are also SKe - it seemed to take me a while to put two and two together, I am sure it is something to do with the sleep deprivation.

 

Thanks for your reply. Isn't it amazing how we as mothers notice the tiny increase of symptoms on a daily basis, my son continue to have more tics, really the same one's but more frequent - I am just hoping it does not escalate to what we have seen in the past. I feel I can remain strong dealing with what he has now, (really just vocal stuff, and he still has a 'real cough" from his cold and he is still a bit stuffed up)- and continuing to hope that the next day will bring the decreasing stage. His behaviour at home is fine, and tonight he did his homework and his writing was much better, so maybe that part of things is settling out. All his letters were facing the right way and his letters were much neater. If I step back from this I can see he obviously has some kind of viral infection and perhaps also had the strep, and the antibiotic did clear up his sore throat and he is left with the cold. My middle son is probably into week three of a cold that started with a high fever for a week. The baby started antibiotics today, so with hope he will be better soon. I am hoping the continued tics are the result of his immune system dealing with the current illness be it strep and/or viral. I just hope he starts to get better soon.