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Just a quick update...

 

My son is doing VERY WELL, it is now Thursday night and he is nowhere like he was last Thursday after school, in fact he came out of school tic free, and has had very minimal throat clearing sounds through the evening, really no motor stuff. I feel tomorrow is the real test as it will be a week of lights at school and last Friday is so ingrained in my mind as to how he was at pick up time - almost convulsing with tics. Claire, I did see your post on another thread about the soya concerns and was somewhat aware of them, it seems there is always something to worry about. So..I got the info from the naturopath today and we are going to go ahead with the food sensitivity testing - and hair mineral analysis. I feel that with all the unknowns it will just be so nice to get some answers to something - and my son really wants to go back to regular milk so this way we can get a better idea if it is the soya that is playing any part in him getting better, or if it is just the reduction of the lights/flicker at school and another week on supplements.

 

The test she recommends is the combined IgG4 and IgE by ELISA method. The blood gets sent to the states. - it is the E95 Allergy Panel

There is also another panel the A-95 Panel that has additional foods but she felt on a north american diet the first panel would be enough. It is about 200 Can for the first panel and both panels would be 300$

Any advice as to whether we should go ahead with both would be great. In reality the only foods on the second panel that he eats are cocoa, corn starch, grapes, yogurt, vanilla, I have not seen these foods mentioned on any boards as problematic.

 

Our main question is really the milk issue and the first panel checks soy, cows milk, casein, cheese, chocolate, eggs, - all the ones that I have seen listed time and time again on this forum.

 

Claire, in re-reading one of your posts to me you also talked about the spectracell vitamin test, should I be looking into this more, or just stick with my current plan right now - what is your opinion of what is most important to focus on.

 

Well, that is it from here - I am hoping I have not jinxed anything by writing down that he is doing so well, I had planned on waiting until tomorrow to update.

 

Thanks again for any advice,

[Claire]

Alison,

 

www.elisaact.com has the ELISA IgG blood test for 150 foods, PLUS gluten, casein and salicylates, all for only $300 US.

 

I recommend that she look into this, my doctor only recently discovered it. But your test sounds fine--this seems like just more for the $$. For our son, all his IgE allergies showed up as IgG anyway (not the other way around).

 

As for Spectracell, as long as they are drawing blood, I HIGHLY recommend this.

 

In fact, my son is having both redone next week.

 

Great news! Unless he has some unusual event tomorrow (does he have computer lab? They are using the LCD monitor yes?) I bet he will do great...I remember that by now last week he wasn't doing as well...

 

Also, last week he got hit with those awful fumes! Now they know to keep him away.

 

This is all so good. You still have more healing (of course), but just think where he is at right now compared to last month. Awesome.

 

Claire

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Saturday morning and the week went very well! I was expecting the same or a little better than last week but things were SO much better than last week. Friday at pick up no tics were there. This morning I have not noticed a single tic either. Last night he probably had a few throat clearings but again nothing anyone would see as a tic, not constant etc. and no motor tics. He did watch 1/2 hour of tv and his eyes did squint a little, but stopped immediately after the TV was off.

I talked to the teacher who advised she has seen no tics but did feel he was not getting much work done through the week - verbally he was doing well but he seemed to be having difficulty getting things down on paper - although when he did his work was neat. She did not seem too concerned as she felt it could just be him getting used to sitting with a new set of friends, (lots to get distracted by) and the work they were doing was fairly creative thinking - he has my creative genes which are non existent! I will touch base with her next Friday again - at home he has been doing all his homework etc so I am not worried about this at all.

 

She did say that the head of janitors has been advised of the incident of the janitor starting his big cleaning machine in front of my son and close to the classrooms putting all that pollution around the kids. She did this on her own as I had not complained about it - although should have.

 

Claire, he is doing so well compared to last month, I just re-read this whole thread and am amazed how far we have come. My first post asks about vitamins etc - I was overwhelmed with the info and reluctant to start anything, now I am dishing out 14 vitamins a day and think nothing of it. The changes in him have been amazing. I so believe that the root cause of all of this has been his immune system and with the PANDAS while the antibiotics got rid of the BIGGEST BUG as I tell my son, it is now the job of the vitamins to build his body and immune system to become strong enough to fight the SMALLER BUGS all on it's own.

 

Thank you all for all that you have helped us. I am as always cautiously optimistic - with hope his body will be stronger to fight the smaller bugs and we will not be hit with terrible tics again, although it sure seems like a lot of ups and downs so while I am hoping for the best I am realistic that our journey continues....

[Claire]

Hi Alison,

 

I cannot tell you how happy I am that this week ended so well! It just gives hope to others that sudden return of tics may well be environmental (e.g. the monitors at school, the chemicals, or the milk in your son's case).

 

And kudos to your son's teacher--she is such a ally and I am so impressed that she spoke with the janitor on her own initiative, good for her (as well he should be cautious there!).

 

Yes, I remember your early posts, he is doing extremely well now! Just continue to keep an eye, especially as with a stronger immune system it can take a few days for a trigger to cumulate enough to bring on tics.

 

It is normal to pay less attention when sitting by new friends. Hopefully the teacher will help manage his distractions. Certainly that sounds situational.

 

I am glad you are still following through with other immune tests. Reducing the high photosensitivity is a good objective, but it definitely takes time. Middle school to me is when it becomes more of a challenge to control in the classroom and with there quest for independence. You have more than enough time here.

 

Keep on posting--especially what you learn on any new testing--we are all observing common underlying conditions here.

 

Yeah!!

 

Claire

 

ps by the way, I am still not convinced that the throat clearing is a tic. I know they can be, but it can be post nasal drip also. Have you ever asked him if he has a tickle there (dry irritation), or gunk (post nasal drip), or just feels like doing it?

 

I bet finding other allergies will resolve this one.

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Hi Claire,

 

I have always wondered about the throat clearing, he started at age 3 and the doctor we were seeing then dismissed our concerns when he went in saying he had a dry cough for several weeks - interestingly enough it was in the summer and we always found the cough was worst in July, about a year later he started to have a blink, again she dismissed it. When we switched doctors ( due to the fact the previous doctor seemed to dismiss or miss many things resulting in more than one hospital stay for my middle child) the new doctor did a full work up, and found my sons eyes to be very red - after a day on antihistamine drops the blinking stopped, whenever it started up again I started the drops and it would stop. He also put him on Biaxin to make sure there was not an underlying infection causing the cough - on day three of the Biaxin his cough stopped - the first time in 1.5 years as the cough had been chronic, probably once every 3-5 minutes. I could not believe when we were playing hide and seek on day three and I could not find him, his cough had ALWAYS given him away. Anyway, the Biaxin tasted horrific and I was unable to get any more into him, we tried having it mixed at a special pharmacy but there was no way to get the bitter taste away. The cough returned within a day or so. But..I regularly would say to my doctor, why did the Biaxin stop the cough - there was never an answer. His cough/throat clearing has greatly improved since the PANDAS diagnosis and antibiotics etc. My husband also has a throat clearing thing -which only started to drive me crazy when my son started too. His is from a post nasal drip and allergies and perhaps some other throat problem, he has had a scope done a while back due to troubles with swallowing pills. I had initially been blaming his bad genes on my son's situation until I did more research and realized it was from my side of the family. My aunt had rheumatic fever and looking back we think my older brother had a mild form of PANDAS. He started eye blinking/rolling that lasted for a couple of years - also very distracted in school. He had chronic strep infections as a child - very similar medical background as my son. It did not effect him socially. My mother did not even mention this to the doctor (the eye stuff) as she just assumed it was a habit - he did outgrow it and had no previous tics nor any tics since. He recently told me he was reading some stuff on PANDAS on the internet and it all sounded like him. He also said he remembers the eye rolling and trying to hide it and he got good at hiding it, and also trying to stop it from happening but it was impossible.

Anyway, back to the throat clearing, we went to see an asthma specialist as well last summer a month before the explosion of tics and PANDAS diagnosis, who said he felt it was a tic but did say there were polyps in his nose which I think indicates a post nasal drip.

 

Since seeing my sons reaction to the physical discomfort of his lips/face being chapped last week this clearly brought on what would be classified as tics, it was not an average persons stretching of their lips when they are sore, but he would open his mouth so wide with his eyes opening up to and he would do it quickly and several times in a row. Very tic like. As the face healed so did the tic. Same as the eye's in the past, it presented as a tic but was really just eye discomfort from allergies. The cough may well be the same thing, allergy related as it seems to be the only one that sticks around.

 

I did look at the elisaact website - so is it 300 US for ALL the testing, including the molds, DEET etc. It was hard for me to figure out the info as there were no prices listed. You had said it covers 150 foods so I am guessing the environmental stuff is extra. I will have to look into it more as clearly my son reacts to pollutants. I will ask the naturopath about it when I talk to her next. With hope we will get around to the testing next week. How long does it take for the results???

It would be nice for the throat clearing to go away as well, but after all these other tics, I certainly can live with a few throat clearings a day, it is not noticeable to anyone the way the tics were.

 

Hope you are having a nice weekend.

 

 

PS I did ask him about his throat clearing and if he feels it is a habit or not, he did not really have an answer - although in the past he said his throat hurt and that was why he did it. I will have to ask at a more appropriate time, when he IS doing it - he seemed to have trouble answering this evening as he was not doing the throat clearing, he may not even know quite what I mean.

Good Tip as Always,

 

I am still amazed by how much knowledge you and other's have about all of this. Reading the recent thread - about looking for a missing link - I have to say - if there is a first or last piece of the puzzle to find this is a great place to find it. I am still amazed about my son and the lights, when you suggested it after our trip to ToysRUs, I did not fully dismiss it but really did not think it had any impact, I really believed it was the excitement, and then going into the baby store a week later and seeing the same reaction, having read your suggestion I immediately looked up and saw all the bright light. What a light bulb moment - literally!!!!!!!

[mmazz]

Alison;

 

Congrats to a job well done:) I makes me feel as if there is still hope for my little guy. We were doing very well that last couple of days. His appetite increased so much that he was asking for meats, eggs and fish and the tics lessoned greatly. On a scale of one to ten- ten being no tics, he started at a 1 in mid December and by yesterday he was at an 7 or 8. Stupid me rushed through dinner and made him pasta (made from ground brown organic rice) and ten minutes later he was back to score a 1. In looking back, he was off pasta for a week because he did not crave it, like he always did, and it looks like we might have a carb issue. To much sugar depleting whatever vit/min he very much needs. Yesterday I started a cal/mag, a mulit and a probitotic and increased the B complex and still continue with the Omgea 3. Any advise? I truly feel like a failure.

 

Marie

[Chemar]

Hi Marie

 

you arent a failure......just on the same learning curve we have all had to go thru...trial and error and then...bingo....success

 

just a point to note on your supps

 

it is VERY important to balance the Omega 3 and Omega 6 essential fatty acids. So try to get a good combo (Natrol makes one) that blends them all in the correct ratio

 

My son simply could not tolerate B complex (neither can I) although the combo of Bs in a multi dont bother us.

We used Royal Jelly as our B source, and supplemented with extra B6 and B1 when needed, plus extra B12 when ill, and B5(pantothenic acid) when he had jaw clenching or tooth grinding tics.

 

Dont feel discouraged, you are truly on the right path. it does take time and perseverance but eventually you will learn what the specific tic triggers are, and which supps help most etc.

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Just wanted to add a quick update in hopes that it will help someone someday...

 

My son is doing great - no noticeable tics through the day, maybe a couple - meaning 2-3 very subtle tics that no one else would notice - today I only noticed one when he was eating - sort of a vocal hum - no one else would have even noticed. (he had at times ticced by the second) He is watching LCD tv - 15 minutes every day or two, we do see an increase in tics which stops immediately - they are subtle eye squints and some throat clearing, nothing dramatic like the huge eye rolls he used to do or full body tics when watching the regular tv just before Christmas. He is very happy, looks so much healthier, is doing perfectly in school, is starting to love to read - before I think he found it difficult as his eyes would tic 30-60 times a minute at times all day. He is a pleasure to be around. I feel so much better and relaxed around him, not watching for every tic.

The only changes continue to be - ongoing supplements and continuing to increase the fish oils every few days, the switch to soya milk, and the reduction of tv/monitors/lighting at school.

We did the blood work for the food sensitivity test yesterday along with the heavy metal hair strand test. I am eagerly awaiting the results. The throat clearing has been a non issue - although I did hear a few throat clearings when he came in from playing hockey in the backyard. It is freezing out so he may have just had a dry throat. Again, nothing anyone would ever think was a tic. Whereas a few weeks ago it was obvious he was having tics.

 

Marie, in response to your question, I am not anywhere close to being able to give advise re:supplements, but I have to say I have been amazed by what a difference they have made for my son - mostly in his sleep pattern - he continues to sleep 2 extra hours and settles to bed without a problem. I do also really believe the milk must have been playing a large part in all of this, and I really only tried taking him off it after reading the thread about the food sensitivities and it kept coming up with so many kids. I can't remember - did you already try this? I don't have time right now to re-read your posts but seem to think you had already cut out some things. If you are able to get a food sensitivity test done I would really recommend it. I feel there are so many unknowns in all of this that to actually have an answer to something will be great. You should not be beating yourself up for making pasta - who knew? Think of it as another clue not as you being a failure.

I seem to be on the same vitamin plan as you. I am also giving Vit C to try and keep away viral infections as that sets of my son. I give the Cal/Mag after dinner as it is supposed to help with the sleep- it sure does with my son. I give the B complex in the am as I heard it could be a stimulant. I spread the Fish oil between b/f and dinner and give probiotic at lunch and dinner as the antibiotics is given in a.m.

[Ronnas]

Allison,

 

Thanks for the update and I am so glad to hear that your son's tics are improving. Our son's have so many similarities. You are doing a great job!

 

Ronna

[mmazz]

Thanks Alison,

 

I am pretty much doing the same, but the cal/mag and probiotics were added just last week. The only thing I am doing different is juicing carrots in the AM and lemons in the afternoon. He doesn't eat much veggies and carrot juice and lemon juice are great detoxifiers, so I figure it can't hurt. I just read a little more about jucing and found that when you detox, all of the toxins release throughout your body and for about one week your symptoms get worse- whatever symptom that may be. I pray that is what he just went through last week. Who would have ever thought that parenting would be that difficult. I think tomorrow I will send my parents some flowers to say thanks for being parents. I am so happy for you and your son. He is a lucky boy! My hat is off to you!

 

Marie

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Marie,

 

It sure is hard being a parent, you truly do not know what you will wake up to one morning and I experienced that first hand. It was only a few months ago my son woke up with an explosion of motor and vocal tics that I had never seen the likes of, but in so many ways it seems like a lifetime ago. I have learned so much - mostly from this forum - and initially from reading all of Ronna's old posts on this site and another site - as her situation seemed so much like mine and it was so hard to find any concrete info on PANDAS. That is really why I keep updating this thread in just hoping someone will get hope in some way from my experience. I would never have seen myself believing so strongly in vitamins/supplements etc - but there is no other explanation to me than that they have done wonders along with eliminating milk. I never would have thought of milk as a problem, my son is a terrible eater but would drink hot chocolate 4 - 6 times a day and I was just so happy that he was getting something nutritious. PANDAS is ultimately an auto-immune disorder and I find it interesting in that seeing my doctor ( who is great), a psychiatrist, a neurologist and the infectious disease clinic that no one at any time suggested that I work to build my sons immune system. It seems so obvious to me now. First get rid of the strep, then work on the immune system to prevent further infection.

Marie - you asked on another thread about guilt/blame etc - yes I have felt all those things, I initially liked to blame my husbands genes ( I usually do for anything negative - haha) but realized it was my side of the family that there is a link to rheumatic fever and PANDAS, we think my older brother had a mild form as a child) My son is and always has been a terrible eater, he lived on ketchup sandwiches and white bread for months - I was concerned but his blood was tested and iron was fine, now I think - What about all the other things he was becoming deficient in???? He had chronic infections as a baby and toddler, I had gone back to work part time and he was in a daycare, I blamed myself for exposing him to all the germs etc. I wished I had looked into his chronic cough more and discovered this site and started on supplements back then - maybe it would have prevented the PANDAS outbreak. There are so many what if's when looking back - but we are where we are for a reason. I feel that my son is becoming stronger as a result of this, not in the way that he has become stronger from going through this ordeal, I really don't think that part has affected him much at all, but in that I am now paying so much more attention to what he is eating and making sure he gets his vitamins. He is becoming so much healthier, I am frequenting the health food store ( not my usual hang out!) and we are spending so much more quality time as a family without the tv on all the time. I also think that my other sons have a better chance at avoiding a PANDAS diagnosis as I am already sneaking flax oil in my 3 year old's juice, and making sure he gets a good vitamin daily ( he is also a terrible eater - they come by it honestly and I am fully to blame on that one) The baby is getting his vitamin in his bottle daily. All changes I would never have made without this. I am even taking vitamins on a pretty regular basis. So without going into tons of details of all my guilt etc - the short answer is yes - I think back and wonder what I have done wrong, or could have changed - but the reality is I have done as well as I knew how to do, I did talk to the doctors when I had concerns but I do wish I went further - I am so thankful for the internet as I TRULY believe were it not for the internet my son would currently be on Chlonidine and a strep infection would still be working away at his little brain causing god knows what possibly permanent damage. I know from all of my sleepless nights that the time I have spent searching for answers has been so worth it for him and his brothers.

 

This evening there was a very subtle increase in tics, again no one else would notice, but he was at the computer lab yesterday so that may be the reason. I think back to only 2 weeks ago and what bad shape he was in coming out of the school that Friday - he presents as a different child now - just in his appearance being so much more relaxed - I said this before and it is hard to describe as he has always been confident but his appearance truly changes when there are no tics. My stress level also decreases dramatically when he is doing well, I feel so much more relaxed - it has now been 2 full weeks that have been very good - this is the longest stretch we have had like this, even on the full antibiotics it seemed there were constant ups and downs, a few good days then another increase. I am looking forward to eventually not worrying about when the tics will appear again.

[Claire]

Marie,

 

Can you tell me where you heard about lemon juice and carrot juice being good for detox?

 

We juice carrots and brocholli (sp?) and I know my son would love fresh lemonade (I would used erythritol/xylitol/stevia to sweeten it). Maybe I will make lemonade popsicles!

 

I know think Chemar mentioned lemon for colds...but what did you read about detox?

 

That was such a nice story that you relayed on the other thread about your two children bonding more, etc...

 

Alison,

 

I agree re the internet... Oh my gosh, where would we all be without it? Did you know that a friend I know who just found out they had cancer had their doctor warn them not to do any research on the internet? Apalling! Talk about an obvious immune issue. Also, it sounds to me like either a high-control doctor or one who doesn't want to spend extra time on the inevitable questions.

 

Anyway, for both of you, I really look forward to your updates. Even through some ups and downs, the forward progress is always so evident.

 

I know for me the breakthrough wasn't knowing that a tic would never reappear, but rather knowing that if it did, that it would only be temporary because I now had the tools to figure it out. That was not 'the norm'.

 

For the record, Jennifer is the one on the site who started discussing this in terms of the 'immune system' (her own research is phenomenal). Her putting it in that particular term (though others were doing just that) set off light bulbs for me. The PANDAS/autoimmune discussions are all a part of it--I read that OCD folks have more immune issues than any 'mental health' category. The food allergy commonality here was key too--I never realized until this past year that food allergies are an immune issue, nor that it was so prevalent.

 

Of course, the path to rebuild an immune system is soooooo complicated. I am just hoping that the food sensitivities can also be resolved by strenghtening the immune system. Otherwise, either diets are always restricted, or the intestines are inflamed.

 

Claire

[ad_ccl]

Happy Robbie Burns day to any Scots out there!

 

Thought I would add another update - although I have posted on a few other threads. Just want to keep some info in one place to make things easier for someone new with PANDAS to follow.

 

We are still waiting for test results for food and metals - should be tonight or tomorrow. We did get the ASO titers back and they were elevated to 1200 - had been 800 in August at time of initial outbreak. YIKES, more stress. We did notice a very minor increase in subtle tics last Friday and put it down to the computer lab on Thursday - nothing big though. By Saturday he was tic free and the Sunday he seemed a little grumpy and in the evening said his throat hurt and asked for medicine. The only other time he has complained of a sore throat was a week before the PANDAS outbreak in August, we gave him medicine and he did not complain again, although when seen by the doctor his throat was very red and he had obvious strep - test was positive. So I am hoping the numbers are meaningless - and that they are either elevated still from August ( if this is possible) or maybe he has had a new strep ( although he is on prophylactic antibiotics) Either way my doctor wants to treat symptoms not numbers which makes sense to me. He did one eye roll coming down the stairs this a.m. (have not seen this in weeks) and I saw a few jerky movements at lunch but nothing really to complain about. He did see a little TV at school for a presentation so that might have caused the minor jerks at lunch. Teacher has advised that he is doing very well and she is seeing no tics.

 

LCD tv is watched for about 1/2 a day at most, and sometimes no tv at all. He does squint when watching and some minor throat clearings but nothing severe like he was doing prior to our no screens test. I am hoping this sensitivity will begin to resolve itself as his immune system continues to repair itself. Claire's success gives me great hope in this regard.

 

All in all I still feel I have nothing to complain about, I would be thrilled even if he remained at the level he is right now, although I do believe we will only see him get even better - he has only been on the supplements for a month and off milk for 2 weeks. He is not yet even up to the full fish oils and I have read it takes about 3 months to see the full effects of the vitamins and supplements. It will be very interesting to see if he has any other food sensitivities and if in fact the milk comes up as one of them.

 

I am just hoping we are not starting up with a new outbreak - as in the end it came on so strongly but there were increases leading up to the explosion ( 20/20 hindsight) - I have advised the teacher so she can notify me if she sees any drastic changes. I hate this waiting to see what is around the corner! At least I know that should it happen again that we will know how to treat it and I can feel confident that his body will be better able to recover thanks to all the work we are doing to build his immune system.

[marina]

Alison

 

Can't tell you how inspiring all your good news is.

The whole tone of your posts have changed, and you are now qualified as one of the wonderful teachers!

Could you please list all the individual supplements you are using.

I am using a combined supplement (with a few suspect ones), but after 6 days things are worse. Will wait a few more days just in case it's a healing crisis.

 

The symptoms are worse even though we went to the osteopath 2 days ago.

These have previously always resulted in great success.

He again found Matt's neck and back very tight. For anyone interested, he mainly uses ultrasound, massage and manipulation to treat and loosen the Fascia. Fascia is a very thin layer of tissue found under the skin. Baically the cling wrap around muscles etc. My loosening this tissue, muscles and nerve pathways are released, therefore no nerve irritation which lead to the tic symptoms.

He also recommends daily ice packs on key points and a series of specific streching exercises.

 

Our 4 previous visits bascially resulted in him walking out tic free for 7 to 10 days before symptoms gradually start to build up. Very DRAMATIC improvements.

 

I was therefore so disappointed that tics still there after our last session, as he starts his new school tomorrow. However Matt does say he feels 50% better.

 

Part of me wants to back to the osteopath tomorrow or Friday for a top up (today is a Public Holiday) rather than our scheduled visit Friday week, the other part wants to wait to see what happens with the supplements over the next few days so that I can build up a clear picture.

 

The osteopath is sure that the cause is food intolerance, and is a bit concerned at the level of magnesium in the supplement, as he believes that to much can cause muscle tension.

 

Another week of no screens is next on the agenda, once I get a clearer picture with supplements.

We did do a week on no screens last year, but in day two we went to the osteopath and he walked out tic free, so I haven't got a definite.

Pretty sure that it will be a factor, as even when tic free in past years he would start blinking under very bright fluro lights.

No screens for this particular almost 13 year old will be a bit easier now that school is starting and I immerse him in as much sport as possible. Basketball and tennis already booked!

However I am reluctant to stop screens at school, knowing that there is no way he will want to appear different to the other kids in a new school while making new friends. The tics don't bother him.

 

Matt lately is obsessed with computers, games etc, (Probably because he feels they are under threat!), and for that age group it is a favorite passtime for all his friends. Wish he was a little more like Paul who is happy to spend most of the day immersed in a good book.

Our playstation broke last week, and Matt has taken the initiative to ring around to see who can fix it! I haven't said anything so as not to argue or stress him, but needless to say it will stay broken.

I am also frustrated with my husband who feel that Matt is just picking up on my tension, and that we should fix the playstation and just back off!

Frustration will turn to downright anger on my part!

 

Will keep on going two steps forward, on step back on this frustrating journey.

[ad_ccl]

Hi Marina,

 

I am so glad that you are inspired by my posts. I re-read them myself at times to see how far we have come and how much I have learned in such a short time.

 

With respect to the vitamin plan my son (age 6 - probably 55 lbs) is on - it is as follows.

 

a.m. 1 chewable multivitamin ( children's - full dose is 2 chewables)

1 chewable vitamin C (60mg)

1 B complex

3 Efalex fish oils - plan to get to 4 (bottle advises over 5 years to have 8 a day for 12 weeks then reduce to maintenance dose - this is our plan)

he also gets his antibiotic in the am

 

lunch - probiotic

 

dinner - chewable multivitamin

chewable vitamin c

3 fish oils

cal/mag/zinc combo

probiotic

 

let me know if you want more specifics.

 

This has been on the advise of the naturopath - we started on very small doses - 1/4 of the pill for a few days, 1/2 for a few days, etc. one fish oil , then two etc. He has not experienced a healing crisis since starting the supplements.

 

We also did nightly epson salt baths ( partly trying to pass the time with the no screens) - it seemed to settle him down - and he would not tic in the bath.

 

I do believe a huge part has been our elimination of milk - we have not eliminated all milk products just cut out the 4-6 glasses of chocolate milk he would drink a day - I am now giving him 2 glasses of soya chocolate milk a day, and try to switch between apple and orange juice - he used to get all the coloured fruit drinks.

 

The other huge part was the elimination of screens - I literally could not sit in the same room as him while he watched tv his tics were so bad. Sounds like you have had good success in the past without screens - even though the first time you did it you also saw the osteopath I am sure it made a difference, as well as when you were at the beach - away from screens. With hope when school/sports start up you will be able to reduce/eliminate screens. You said your son does not like the bright lights so it does seem there may be a photosensitive issue there.

 

We started supplements around Christmas - we saw immediate improvement most notable was his increased sleep patterns, falling asleep quicker, and sleeping longer - a full 2 hours longer in total. He would sleep soundly in the morning as well whereas before he would awaken and get up the minute he heard anyone. That week I had also switched to soya after reading the food sensitivity thread - school started back - he was 99% tic free, we went back to cows milk that monday as he said he preferred it and I did not see any harm in going back- probably because I doubted the milk could be that big of a problem. By friday that week he was convulsing coming out of the school - lights probably were a contributing factor as well. That Friday we went back to soya - some changes were made at school to reduce the flicker, and we have been doing excellent since then. Only minor increases when he has computer. His tics are very subtle where no one else would notice, whereas that first week of school each day he was worse as he walked towards me, I could even see people doing double takes as he walked by - probably wondering what was wrong. He looks tons healthier now - almost a glow about him.

 

Sorry that you are having some challenges - it seems that some kids do react to certain vitamins so it probably would be best to try them one at a time. I know how hard it is - I tried everything all at once as I wrote in a previous post. You just want an immediate improvement - it is so hard to wait, and even harder when things are getting worse not better.

 

Maybe it is a healing crisis, especially if the osteopath did not make things better - and you have always had success in the past, that could be good news. I hate the idea of a healing crisis - any increase in tics for whatever reason is so upsetting at the time. It is even more upsetting when you are worried about school starting. It is good that his tics don't bother him, I really think this is most upsetting for the mothers! While my husband was concerned he was not crying all day long and searching the internet all night long - a mother's love is very deep and very special.

 

Have you done food elimination ( I think you have) or food sensitivity test? I am sorry I can't remember - and don't know if I can re-read other threads without losing what I am writing. I am really shocked at what a change my son has had over the last couple of weeks and I really believe it is the combination of the supplements and not drinking milk. Never could I have imagined that something like milk - which he loves and from all accounts is good for him - could have such a bad effect on him. I think back to all the milk he drank as a toddler - 8 bottles a day - as his tonsils were so big he could not swallow food well and he had chronic ear infections, I wonder now if his infections would have stopped had we stopped giving him milk.

 

I do think there are many things at play here - but the bottom line is they all impact the immune system which is the root cause for us - due to PANDAS, but it really seems that regardless of the diagnosis, be it transient tics, chronic tics, ts, everyone is having similar success with building the immune system as well as not stressing the immune system with foods that the kids are sensitive to - or light/tv etc.

 

I am at such a different stage than you with respect to screens - my sons friends all have gameboys but he seems ok right now not having one, and is pretty happy with all the one on one time he is getting. The teenage years must be such a challenge.

 

It is a long road - and I know the feeling of going forward then seeming to step back again. Just remember with each success try and enjoy it even for just the moment (I am working on this one) and when you are taking the step backwards think of what you are learning from it. It is a big puzzle but we are all so committed that I think in time it will come together.

 

Take Care,