Please help

[Hedgie]

My son came down with eye blink tic in sept a week after he started new school. I noticed it immediately although it looked more like allergy ,and after 2 weeks became really rapid for about 3 days then slowed down to when it first started ( allergy like.... but more frequent then a normal blink)A month later he started a nose scrunch tic ( sometimes just nose sometimes lip involved to.... Like scrunching nose when your mouth is open). He has been doing both these tics although not always together for a month. Recently the eye blink has almost totally stopped and the nose now seems much less severe. I'm not sure if he now is doing eye roll. He looks off to side sometimes.... Not often and it looks more like a shy reaction and like someone who doesn't, look you in the eye( not rapid or darting). I am not sure if this is my imagination since I,m sick with worry.... No one notices it but me and in occurs very infrequently even for me. I have also noticed an infrequent shoulder shrug....hardly ever and does not seem tic like, but it does happen maybe once in the morning and a couple( 2 maybe 3) times at night while doing homework. It has been exactly 3 months since the start.. Eye is almost disappeared and nose not very severe.... Only when excited. Not sure if eye roll is imagined in my head as it does not look odd or if it is shyness and not sure about shoulder ...both are very infrequent. Certainly not like eye blink or nose scrunch manifested itself

 

Is it possible this is still a transient tics Please answer truthfully no need for false hope ( i mean this very sincerely)Has someone ever had multiple tics like I describe and it was transient.... Not chronic or Ts? I know a years wait is necessary for dx. But I believe that is just a random cutoff number and one can actually tell earlier. Please let me know.... Internet has no real answer. Could it still be transient.... Has there ever been such a case? He is a very bright 8 year old. No problems at school both academically and socially.

 

Grateful for any responses

Thank you

[Chemar]

Hi

Just to reassure you...transient tics can be simple or complex, and are failry common in young children and most often resolve naturally.

 

There are a lot of things that can cause tics, in addition to Tourette....things like food and environmental allergies, infections and a lot more.

 

Many people find that dairy intolerance can sometimes be the cause of eye tics so you might want to try dairy free for a while to see if any improvement?

 

Take a look at the Helpful Threads pinned to the top of this forum (also linked below in my signature)

 

Hope you find answers. Try not to stress or fret too much, especially in front of your son, as often that in itself can be a trigger for tics.

[blakes_mom]

I have to respond because my son had these same exact tics. (Blinking,mouth stretch and looking to the side. These tics started suddenly when he was 5 and it scared the heck out of me. He went on to be diagnosed with PANDAS. Are you familiar with this? Pandasnetwork.org has some great resources. By the way my son is 12 now and tic free. Let me know if I can help in any way. I know exactly how you are feeling right now.

[lmcgill]

One word: RELAX! I am not saying to ignore the situation, because if you are like me that would be impossible! It was a long journey for us, but my sone started around 8 and he had numerous tics. They all started with the eye, then shoulder, nose scrunching, even hoping. We did everything including a GF diet, which he is still on, Grimwalds supplements which I think really helped. Anyways, he is almost 15 and no tics save maybe the odd eye one when he has gluten or chocolate. Bottom line, it will pass.

Read my posts and you will see the journey I was on. I wouldn't want to go through it again, but if I did, I would be much better prepared.

[Hedgie]

I have to respond because my son had these same exact tics. (Blinking,mouth stretch and looking to the side. These tics started suddenly when he was 5 and it scared the heck out of me. He went on to be diagnosed with PANDAS. Are you familiar with this? Pandasnetwork.org has some great resources. By the way my son is 12 now and tic free. Let me know if I can help in any way. I know exactly how you are feeling right now.

 

 

I have to respond because my son had these same exact tics. (Blinking,mouth stretch and looking to the side. These tics started suddenly when he was 5 and it scared the heck out of me. He went on to be diagnosed with PANDAS. Are you familiar with this? Pandasnetwork.org has some great resources. By the way my son is 12 now and tic free. Let me know if I can help in any way. I know exactly how you are feeling right now.

I am too thinking maybe Pandas....but I only know about if from the internet. Where do I start? How do they test? where do I go to get the ball rolling? I live in Southern Ca and seems like doctors here are not educated or believe in Pandas/Pans. I am able to travel anywhere to have him see a specialist . Who would you recommend if you could see anyone? Who will give course of antibiotics? I am so confused on how too start.. I believe he had strep a year ago...but never tested just had a horrible painful sore throat that woke him up along with a high fever. He was on 2 different antibiotics for it and after that kept complaining for 2 months about a taping feeling inside his head. Took him too nureologist at time who diagnosed nothing...seemed to resolve on it's own 3 months later. No ocd...but sometimes gets easily frustrated and suddenly afraid of dark. So worried. What should be my next steps? He is an otherwise happy intellegent boy. No history of TS in family. Is true TS always hereditary? Please tell me what my next steps should be. We r seeing someone at UCLA soon....but not sure this person believes in Pandas

[Chemar]

Hedgie

if you suspect PANDAS/PANS I would suggest starting on our PANS forum to get info http://latitudes.org/forums/index.php?showforum=17

 

also look at the helpful threads section there, pinned to the top of the forum

 

One of the most informative sites on PANDAS imho is http://www.pandasnetwork.net (blakes_mom also linked it for you)

 

Be sure, if you investigate PANDAS/PANS, that you go to a doctor who actually knows about it as many do not!

 

TS is not always hereditary according to the "experts" but I often wonder if that is just because many cases of tics caused by other factors are being misdx as TS.....my personal feeling is that TS is genetically inherited, but even there, often other factors can act as the trigger to "switch it on"

[Jetocurly4]

My son was two and the same thing happened, the tics often changes and the docs kept saying it will go away and if it doesn't after a year then we will look at it, well they never did go away and he is now 7. They are on and off. The docs wanted to medicate him after a confirmed dx but I am trying all natural aspects that I can. We tested for PANDAS it was negative, tested twice actually. WE only use organic, no dyes, no smells, no preservatives and found out he had food allergies so stop eating those of course. Also stopped vaccinating and increased magnesium. It's on and off, sometimes they go away for months then they come back and they are always different. Follow your heart, look into options, research. We also got my son into Karate, it has helped as well!

[blakes_mom]

My son was two and the same thing happened, the tics often changes and the docs kept saying it will go away and if it doesn't after a year then we will look at it, well they never did go away and he is now 7. They are on and off. The docs wanted to medicate him after a confirmed dx but I am trying all natural aspects that I can. We tested for PANDAS it was negative, tested twice actually. WE only use organic, no dyes, no smells, no preservatives

and found out he had food allergies so stop eating those of course. Also stopped vaccinating and increased magnesium. It's on and off, sometimes they go away for months then they come back and they are always different. Follow your heart, look into options, research. We also got my son into Karate, it has helped as well!

I am curious how they tested for PANDAS as there is no definitive lab test available.

[Chemar]

There may be no "definitive" tests, but the strep titres plus other clinical evaluations are freqently used as "testing" criteria, are they not?

There is also the Cunningham test now as far as I know, which, though not definitive, certainly does give some valuable pointers.

 

My own son was evaluated many years ago by one of the forefront PANDAS researchers, Dr Murphy, and based on his bloodwork and having no history of strep at all, plus some additional clinical evaluations by her and her team, she felt he was not PANDAS, especially as there was generational TS on his father's side of the family.

His tics and OCD responded very favorably to dietary and supplement treatments etc

[Jetocurly4]

For my son when he was tested, we had two sets of lab work done from two different labs at my request. Also the ped suggested next time he was sick, to have him tested at that time too so we did that.

[blakes_mom]

Im guessing your pediatrician ran strep antibody tests. If your pediatrician ruled out pandas because these were normal he is not very knowledgeable about pandas/pans. It it well known that some kids do not get elevated titres with strep and in addition there are other illnesses besides strep that can cause this. The Cunningham panel is also not a definitive test. Chemar we will just have to agree to disagree as I stand by my statement that there is no definitive test for Pandas. My son had an excellent response with antibiotics so our experiences are different. I am happy for anyone that can clear tics all naturally, but if you are not getting the response that you want for your child in my opinion Pandas needs to be considered.

[Chemar]

?? I agreed there was no "definitive" test? Said so in the first words of my last post.

 

What I was mentioning was that there were testing and clinical criteria that knowledgable physicians employ to at least attempt a baseline evaluation.

 

As there is no definitive test, surely one can only do everything known to check for the possibility.

 

And yes, I have always agreed that one should look into PANDAS when a child meets any of the criteria for it. That is why my own child was evaluated by Dr Murphy, even though we knew there was a family history of TS. I wanted to be sure to check everything, and in those days, PANDAS was relatively unknown. So we drove from Orlando to Gainesville weekly for continued testing and clinical evals from Dr Murphy and her team.

My son responded badly to abx, as he always has, and had zero improvement from the trial runs, nor subsequent periods on them.

No steroids allowed as they exacerbate TS

SSRIs made him psychotic!

 

Then when we took him off all the meds and went onto the dietary modifications and supplements, he had dramatic improvement! ( I actually read about Bonnie's protocol back then in a print version of Latitudes magazine, which is what first brought me here)

My son was still a patient of Dr Murphy's team at that time, and they saw the amazing improvement and felt this was further verification that he was not having his symptoms due to PANDAS albeit maybe a PITANDs component so we also included many natural antibiotic foods and supplements

(He had Epstein Barr virus when younger so we have always known there may be some form of infection connection)

 

Anyways, I am not sure what we have to agree to disagree on, as it seems that we are saying the same thing maybe just differently.

[Pilbara]

Firstly we all know how your are feeling, we have all been right where you are now. It's hard not to question yourself, but trust your guts always as you start on this journey. Your will find that you will become more knowledgeable than the doctors. The information and people in here are invaluable and will certainly help you start checking things off and explore all options.

 

The frustrating thing with tics is that there is just no way of knowing if it will be TS or not, you just have to wait for the first 12 months to pass.

My son has had multiple motor and vocal tics for the last 9 months. I followed the advice in this forum and the ACN site. Sheila Rogers book "Natural Treatment to Tics and Tourette's" has been my go to resource.

Currently I'm working with an Integrated medical practice that has Naturopath as my primary worker. We have ruled out PANDAS, but we know he has high aluminium in his system which lodges in the brain and central nervous system. This has inhibited other nutrients being absorbed into his body. We have been detoxing him slowly over the last 4 months, working on gut repair and bringing up nutrients and mineral. I also went chemical free in the home and made some minor dietary changes dependent upon what seemed to heighten his tics. Anxiety is very much tied up with my son's tics.

 

I am happy to say that right now there are no vocal tics and motor tics are only very occasional. He still has not had a day that I could say that he has not displayed some tic but he is in a really good place right now and really it's probably only me that notices the occasional tic. I know this may or may not change, we just have to take it day to day. Accepting the waxing a waning is part of the process, but I'm still very hopeful. We are here when ever you need support and advice.