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[SDK]

Hi Alison,

I feel exactly the same; hoping that the tics will not escalate to last year's level. The immediate strep test yesterday came negative, so we are waiting for the 48 hour result now. The TS forums are a great place to hear about other people's experiences; they will probably help to put the puzzle pieces together in the long run. It is a shame that doctors don't know enough to help.

SDK

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Just another quick update.

 

I would say my son's tics are on the decrease - they are certainly not getting worse. Not gone yet either. His hand writing is back to normal and he is very happy in general. He is on day 13 of the full dose of antibiotics so I may keep him on it for a few more days then decrease to the prophylactic dose. I just wish the tics were gone and then I would feel more comfortable. Although I have been thinking about the possibility of the tics increasing with the increase of yeast and perhaps the increase in dose of antibiotics actually increased the tics, as they seemed to increase a few days into the full dose. Although that is also consistent with PANDAS. Such a guessing game. I am being sure to give him 2 probiotics a day. The baby is tons better - sleeping through the night and so much happier. When needed, antibiotics sure are a miracle drug! I of course am coming down with a very sore throat - I was fully expecting that once everyone was better I would get sick. I think that is what happens to mother's most of the time.

 

I have been reading a lot about b vitamins and zinc related to the pyroluria (sp). Just curious in terms of what amounts of these vitamins are given. My son currently gets the B complex - so 50mg of the B vitamins and 10 mg of zinc. If anyone can share what amounts they have given there kids I would appreciate it. I have heard zinc is very good so wondered what amount is appropriate for a 6 year old - approx 50lbs.

 

Thanks in advance.

[Guest Lynn Molaro]

Hi. This is my first time posting. My daughter is 6/12 years old and starting blinking a year ago along with throat clearing (which she has been doing since 1 - 2 years old. The blinking stopped for a few months. Then when school started she started banging her forearms on the table (mildly). Then suddenly one day in February she started banging more, thrusting her chest into the table, jumping in place and sniffling. I took her to the pediatrician and he did a strep test which baffled me because she had no symptoms except her legs hurting. Her strep was highly positive. I did the zythromax because she is allergic to penicillin, and tested her againg two weeks later and it was negative. The doctor suspected PANDAS. I tried the natural way the past two weeks with magnesium, B's, and zinc. Not really too much of a difference. These past two nights have been really bad and I am very upset and depressed to see my baby going through this. She had blood taken last week and everything was in normal range except for the DNASE - B which was elevated...........the doctor suggested the long term antibiotic therapy. She is on her second day of biaxin. Someone mentioned that RONNA was familiar with which antibiotics work best. If you could please get back to me, I would appreciate it so much. I don't know what to do for her. This website has been my Bible for the past few weeks. I have an appointment with a pediatric neurologist in April. Please if anyone could give me some advice, I would be very grateful.

Lynn KEVLEE9398@aol.com

[Guest Lynn Molaro]

RONNA,

 

My email address is KEVLEE9398@aol.com

 

Thanks

[Ronnas]

Hi Lynn,

 

I am sorry to hear that you are having a difficult time with your daughter. I don't know which antibiotics are best as this needs to be decided with your doctor. I can tell you our experience with antibiotics.

 

My son's story is a long one and his diagnosis is Sydenham's chorea as a complication from rheumatic fever with a secondary diagnosis of PANDAS based mostly on his dramatic improvement with antibiotics...anyways...about 2 years ago he had muscle, nerve and muscle biopsies as the neurologists were looking for neurodegenerative and metabolic disorders b/c my son's tic/abnormal mov'ts and other symptoms were so severe. He developed a post-op infection at the nerve biopsy site and was started on a post-op antibiotic called Keflex...within 3 days we noticed a DRAMATIC improvement in his tics etc and after a long drawn out process we came to the dx of PANDAS.

 

Once my son was done the two weeks of Keflex his symptoms always returned. Our neurologist thought that we should try Pen Vk prophylactically and my son had no response to this antibiotic which we did try several times...again we always returned to Keflex. He was on Keflex for about 6 months and then his tics returned quite abruptly. Our doctor switched to clindamycin to try and erradicate the strep if he was a carrier...he responded well to the clindamycin. He remained on clindamycin prophylactically for about 6 months at which time I did a food elimination diet, added supplements, treated for yeast, and gave probiotics.

 

At this time my son is doing very well...minimal tics that only I would notice. He remains on supplements and all dairy remains a trigger for him so we avoid it. In the last year he has had two sudden PANDAS episodes each of which resided with another round of clindamycin. I certainly have no idea if this is the best way to go but it is what seems to work for my son. The best thing to do is to discuss with your doctor what would be best. Many PANDAS kids are on prophylactic antibiotics. We have chosen to not use prophylactic antibiotics as I am not sold on the idea that it prevents strep infections...but that is just me. My son has a mtiral valve regurg due to the rheumatic fever/sydenham's chorea so we are extra careful to have him swabbed for strep at any sign of illness and we treat him if we think it may be a problem.

 

We have taught our kids very good handwashing and it must be helping because this is the healthiest winter we have ever had (knock on wood).

 

The fact that your daughter has had tics since an early age would suggest to me that she does have the predisposition to a transiet tic disorder or TS and that the strep has exacerbated an already existing condition. You should see improvement on the antibiotics but I would suspect it will not completely eliminate all of her tics.

 

Take Care and (((HUGS))) to you as I know how hard this can be.

Ronna

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Another quick update - seems like a while. My son is doing well - the cough, hmm tic is gone, unfortunately it seems to be replaced with an eye tic - which we have not seen for ages ( I was intrigued reading recent posts with a few kids having an eye tic occur at the same time - coincidence I guess) It is not too bad and not constant. He did have computers a few days ago and I wonder if that contributed to it. He has not watched any tv for a good few days - and none since the eye tic - and very limited LCD prior to the eye tic. He is happy and the teacher has no concerns. He has advised that he does not want to watch any tv for a while so he has certainly made the connection to the eye tic and tv. We are hoping to do some testing in the next week or so - yeast and maybe the pyrolouria. Both seem to possibly contribute not just to tics but also photosensitivity. I have been reading daily but not posting so much - I feel pretty drained in general - everyone was sick here for a few weeks, then I was sick. I feel exhausted in many ways - physically, emotionally, mentally. Part of me just needs a break from all of this. It was such a drag when he got the infection a month ago - as he had been tic free and doing so well. I do read daily and enjoy all the updates and info sharing. I am continuing to be Betty Crocker in the kitchen - 100% gluten, casein, soy and egg free. It is amazing how you get used to a new way of life very quickly. I never had time to bake before but now it is an activity that the kids love to participate in - it takes a little longer but they really enjoy it ( plus it is something to do in place of the many hours of tv they used to watch!)

Dara - you are a woman on a mission to help your son - you will find all the answers you are looking for in time, and it will be quite a journey that one day you will look back on and be so proud that you took

Marie - look at you - dishing out all the great advise, it was only a couple months ago when in a post you said you hoped one day you could help someone. Looks like you are getting what you hoped for

Marina - hope things are well

Lynn - I have written a lot in this thread ( probably too much) about my experiences with antibiotics, we were on Biaxin for a long time - ultimately my belief is that antibiotics were not in the end the cure for my son ( and the very long term use probably caused other problems) they are necessary to get rid of the infections, but I really feel that ultimately PANDAS is an auto immune disorder and you have to get to the root cause - what is making your child's immune system overreact. For my son it was that everyday foods were attacking his immune system making it weak, along with a very poor diet. We have seen incredible results since January when we started supplements and eliminated certain foods.

SKD - hope things have improved for you

Ronna - hope you and baby are both well

Claire - I miss your posts

[Guest Guest]

Hello everyone

 

Have been reading lately, and keep meaning to post, but the days have gone by and my eldest hogs the internet for his computer course.

Also my exhaustion (yes you all know the type, feeling totally dead tired all the time etc) has been confirmed by medical tests as being due to adrenal exhaustion & therefore I've very low on most natural energy hormones. After all the stress, they finally packed up when Matt started to get better!

So please, look after yourselves. The kids do pick up on our stress, and also if we run out of energy reserves, we can't help them. Still easier said than done when we are so worried and desperate.

 

Matt continues to do well, with him only having eye tics at the moment. (mostly due to increase in screen use)

 

I have been trying to work out the role of food to his photosensitivity, especially will Alison's and Ronnas success. There is a definite role.

 

Two weeks ago he went on a three day school camp. His tics were 95% better until then, while on food restrictions and no screens.

I was hoping the camp would be a test showing what happens with no screens and no food restrictions.

He failed the test, coming home with constant eye tics. Thank goodness the neck jerk and head roll hasn't resurfaced. However, the trial didn't tease out the variables.

Yes there were no food restrictions, but I didn't count on the DVD screens on the buses during the total 8 Hr trip up & back!!! And I should have considered the sleep deprivation!!

There was however one instance which stood out.

Matt said that the boys (I thing about 10 in his room) were very big on spray deodorants. Matt reacted very badly and his brother faked asthma in order to make them stop the excessive use.

 

Since the trip he has improved, however does have eye tics while using screens.

Reading on the laptop is OK, however watching a movie, either on a regular TV or the LCD trigers eye tics, which then stop. Like many of you, I think cartoon type images are worse. I'm not convinced that he shows any difference if its the LCD or normal TV for movies.

 

This week, he had an appointment at the Royal Childrens Hospital with a doctor who I know has done studies with colours, and flavoring on children, and has worked with many ADD kids.

Her thoughts were that tics are common, and can come on at times of high stress or anxiety.

She feels that foods, additives etc can have a role by being an additional stress factor on the neurological pathways of children with tic/ADD tendancies, and believes in the total load principal.

Although she didn't know of the role of pandas or photosensitivity she certainly was receptive.

In the end, Matt had blood tests for strep, RAST tests for gluten and dairy, and a coleliac screen.

As she said the testing will only show if he is having an allery reaction, however he may have food intolerance which is not an IGE response and won't show up on blood tests.

She thought the barking cough(very unusal sound, which wasn't asthma) that cleared up as soon as he started the diet may have been due to the elimination of sulphates in foods, especially found dried fruits, and fruit juices.

 

We go back in 8 weeks, and during that time, we will stick to his current diet, and allow him more time on screens to see what happens.

Matt told the doctor that he sees an obvious correlation with foods, and flouro lights, but thinks that the screen reaction is due to him immediatly thinking about the tic and me watching him(The mum watch thing). Clever boy

Matt bargined to test games during the school holidays coming up in a few weeks, on the proviso that he stops or again reduces screen activity if tics get worse.

 

The doctor also discussed the possiblility of further restricting his diet, and perhaps a short term use on an anti-anxiety medication. (I wasn't receptive to that, especially since we have had success so far!)

At the end, I thought the visit was helpful, and that she is willing to help in teasing all these issues. However the knowlege gained from all the wonderful people on this forum means that I know more than her on what may help Matt without resorting to drugs.

 

At the moment we are not using any supplements. I'll look at them latter for Matt so as not to get mixed up. But I have started them for our eldest son who has definte food sensitivities and ADD. I have also booked him in for gluten, dairy, mold and dust blood tests. He is doing very well, but headaches are still a daily issue.

 

Dara, I've been thinking of you and can understand your frustration. Hang in there, because I'm sure you will work it out.

Have you tried an osteopath as an interim measure?

 

Best wishes to you all

 

Marina

[Dara]

Hi Alison,

 

It's so good to hear from you again. I often think about you and your son. I'm so glad that he's doing well. As you can see from my posts, I'm a mad woman these days. Absolutly focused on helping my son Karl. I just love talking to all of you. I don't know what I'd do without you.

 

I'll keep in touch.

 

Dara

[Dara]

Hi Marina,

 

Did you ever think our lives could be such a rollercoaster??? Ha, ha. Tonight I finally think I realize that I have to calm down and not be so hysterical about our situation. But as a mom, you know how hard that is. I just want to 'fix' Karl so bad and find it frustrating that I can't. In talking to the other moms, I think our son has three distinct issues that need resolving. Those being yeast/bacteria, elevated cadmium levels (toxic metal) and possibly pyroluria. I did the pyroluria test two weeks ago but the results aren't necessary correct, since I was giving Karl increased amounts of B6 and Zinc a couple of days before the test which can throw off the test results. Karl scored a 15. I believe a 20 means that the person should be treated. Anyway, I'm doing another test on monday.

 

We also have an appointment with a new DAN doctor on May 28th, who I hope will find the piece of the puzzle that our current Environmental MD hasn't. Our current EM isn't overly concerned about Karl's high yeast counts or the elevated metals. They did put him on Nystatin for the yeast, Culturelle for the bacteria and zinc for the elevated cadmium, but she doesn't understand the possible correlation between any of this and tic disorders. I swear I know more that she does. Just like you and the doctor you saw at the hospital. I'm really hoping that this new DAN doctor will look at all of Karl's test results and come up with a plan. His tics have been so bad the last couple of months - coughing, sniffing, lip sucking and head nodding, not to mention the vocal tic, which is contant. We were in a doctors office yesterday for my other son, which was kind of on the quiet side and all I could hear was Karl's humming and sniffing. It almost sounds like he's saying 'um' 'um'. It's so involuntary. It makes me SO nervous and anxious to hear it. I'm praying that this is one tic that will hopefully go away as fast as it came.

 

Finally, I think I might have asked you this before, but what's an osteopath? Is that a chiropractor? I've actually been thinking of taking him to one, especially since I noticed one of his shoulders are lower than the other. I'm just hesitant, because that means dragging him to another professional. He's been to so many doctors over the last year and has had so many things done to him. I'm trying to limit where he goes unless it's really necessary.

 

Please keep in touch.

 

 

Hugs.

 

Dara

[mmazz]

Hi Allison,

 

Great to hear from you. It certainly has been a rough winter. Thanks for the kind words above. Yes, I am settling down and accepting the journey. This acceptance has made it easier for my family and my son seems to be the better for it. Since yesterday we seem to be in the waining stage. Strange enough last Friday he had a lot of pizza and pancakes and by Sunday he was eye blink/rolling. By Wednesay his tongue was WHITE..yuk. So, I am guessing that the processed flour and/or wheat triggered his yeast. I increased his calcium and pushed more carrot juice to detox and by Friday he was okay. But I was wondering about the unseen triggers. Since your son started eye blink/rolling again at the same time mine has, can you tell me if the weather by you has begun to thaw? We here are about 45-50 degrees and all the snow has melted. Allergies sufferers are starting to complain, so I guess "spring is in the air". I wonder if there might be a seasonal issue. My girlfriend swears her child only tics from fall until mid winter, the rest of the year she is fine. My neurologist told me that her daughter tics about the same time frame each year. When I asked her about allergy related issues, she stated there is no medical data on that. I know many people on the site talk about difinative food allergies and dust mites, but I have not read about seasonal stuff. Have you?

Well I got to run, I hope all continues to go well for you and your family. Have a great spring break and I will look forward to your posts.

 

Marie

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Hi Marie,

 

Interesting about the weather. It is thawing out here - around 0C and just above. There was also a Monday a week or so ago when the teacher told me he just had such an off day in general - it surprised me as he had done so well that weekend, it had been pouring that whole day and was very unusual weather, as the next day we had a snowstorm. I had been reading the day or so before a post about rain and mold - so I made a mental note that it was raining that day - just to see if there is any pattern to it. Could have been the kids were indoors all day so a little off in general. It is amazing the little pieces of info I learn here - all parts of the puzzle. I have not read anything specific about thawing and tics - but it sure seems possible. The last two days my son has been doing amazing - the eye tic is pretty much gone, very infrequent - maybe saw it 6 times today in total, and no vocal stuff - the hmm umm thing is gone. I hope it was all related to the strep and his immune system is almost back to pre-strep form. Look forward to hearing from you.

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I HATE FLORESCENT LIGHTS....just had to get that off my chest. So, I happened to post yesterday about how great my son was doing, no vocal cough etc, minimal eye ( 4-5 in total) and that with hope he would be tic free again within a few days. This morning he was even better - not a single tic and he continued to be tic free until we went into a store to return something and there were florescent lights. He really has not been in a store with florescent lights ( he can go into grocery stores, toy stores, cosco etc. anywhere with incandescent lights without any problems - which rules out the possible stress factor which is what my doctor initially thought would be the cause of the tics in stores) since our horrific Christmas experience when he was getting his reward for not watching tv - he had been tic free and basically started to convulse in the store - I had assumed it was excitement and Claire suggested it might be the lights, I was skeptical...until a week later when he was again tic free he had the same reaction in a baby store - nothing exciting there. So, I was returning a deep fryer ( yet another small appliance I have bought in recent weeks for these food issues) and he was with me as we were planning on getting him some new shoes as well. I could hear him start to cough almost right away, then even a few motor things started - nothing like the ToysRus episode - that was a 10 on a scale of 1-10, this was more like a 3-4, but when he was at a 0, it was upsetting. I reluctantly went on to get the shoes, and he continued to have vocal coughs - and his eyes were darting up as well. We got out as fast as I could and he had eye and vocal tics in the car - (he had absolutely none on the way there in the car) Things have settled out since being home, but not gone away. I guess the good news is that his reaction was nothing as severe as a few months ago, but I do feel I have to get at the bottom of this photosensitivity issue. Was his reaction less as yeast is less of a problem now than then due to the use of probiotics? Was it less as he has been having supplements? All questions which I wish there were easy answers to. We are going to see the naturopath this week and I will be asking about the pyroluria test as well as yeast test as it seems both of these conditions can cause photosensitivity.

[mmazz]

Hi Allison;

 

Just some facts..food for thought. I just read that high mercury levels is a cause of yeast. Flor. lights are made from mercury. I've been thinking about my son last weekend eating so much pizza and pancakes that I forgot he ate cod and clams on Saturday night. My thoughts just might be that there might have been high mercury in the fish that trigered his yeast (which turned his tongue white) and that trigered his eye roll/blinks. I am unfamilar with flor. lights and if they do emit any mercury into the environment, but it just might be worth the question asked to someone who knows. Can anyone advise if flor. light emit mercury into the environment from just being on?

 

Marie

[marina]

Hi Dara

Sorry for the delay.

From what I've read, an osteopath although not exactly the same, work in a similar way to a chiropractor.

Your observation about the shoulder is exactly what would happen to Matt. One shoulder was obviously higher, and is now one of the first signs I look for, before asking him to do his stretching exercises.

I think it was due to all those muscles tensing and somehow locking.

I can totally understand you hesitating before trying one more thing as I feel I bombarded Matt with a hundred things at once, however it may be worth a try.

In our experience, the earlier treatments when the osteopath worked on his neck brought instant relief lasting about 7 days, whereas the last time he concentrated more on his back, bringing little improvement.

Hot showers and an ice pack over his shoulder also helped.

At the moment Matt is OK but I'm getting confused as per my post to Claire.

 

Yes what a rollercoaster!

 

Marina

[Ronnas]

Hi all,

 

I thought I would mention that at some point in the past I read (somewhere?) that seasonal allergies can make food sensitivities more of an issue. Kurt has tolerated the re introduction of eggs, chocolate and corn quite well and milk to a certain extent in terms of cheese etc but as spring comes he has way less tolerance to milk. He has always been a seasonal allergy kid since he was a baby with asthma etc. Anyways, what I am trying to say is that for my son his food sensitivities seem to be much worse in the spring than any other time.

 

Kurt has a cousin that only tics from about March to May which is probably from an allergy to "snow mold". As well Kurt has an aunt that has a sensitivity to eggs in the spring...she only noticed the connection when I mentioned it to her. She generally avoids eggs all year long but does say it seems worse in the spring.

 

Ronna