Testing for tic disorders?

[angiek722]

Hi,

I am a concerned step-aunt of a 16 yr old boy. His father, married to my sister, is currently attempting to acquire residential custody of his 2 boys (the older son above). During the beginning of testamony, the ex-wife has the boy's pediatrician, stating the boy has initial symptoms of tourett's, but says there is no way to test for it. My brother-in-law has wanted the boy to be seen by a pediatric neurologist, psychitrist, etc.. for further evaluation to truly detrmine what his diagnoses my be. Howver, the ex-wife has made no attempt tohave the boy fully evaluated by anyone other that his pediatrician. Two questions: Should the boy be seen by a specialist inorder to determine if the apprpriate interventions are in place? and Are there ways tic disorders can be tested?? Looking for info to try and help the boy and my brother-in-law to see this boy gets the treatment he fully deserves. Can you help me in any way?

[mmazz]

Hi and Welcome to the forum;

 

Many people here test for the underlying causes of tics, i.e., mercury poisoning, yeast, etc. The diagnosis of TS is a clinical one and mainly made by neurologists after ruling out some pretty hairy stuff like seizures, etc. You did not state the manner or frequncy of tics but all here in this forum and including mainstream docs all know that stress and anxiety contriute strongly to tics. Divorce and custody battles rank pretty high on the list for anxiety. With all due respect, if your brother-in-law or your sister really want the proper treatment for the child, start at home, seek family counseling and find out where the child wants to live. I've watched and lived through some pretty nasty stuff regarding divorce and have a nephew who was almost lost as a result. Courts are not the place for children and parents must decide what is best for their children together...not judges. Sorry for such strong advise, but my heart breaks for these children. Whatever happens I pray that your step-nephew will make it through this rough time in his life.

[Chemar]

Hi

good advice that Marie has given there re anxiety issues and counselling!

 

As far as Tourette Syndrome is concerned, only a neurologist is qualified to make that diagnosis, and then only after one year of both motor and vocal tics being present.

 

There are many other tic disorders that can be caused by a variety of factors as marie has outlined and so it really is essential that a proper diagnosis be made, especially before any medication be given, as most of the meds precribed for TS have very severe side effects and should be avoided if possible.

 

It is so sad to see a child who needs love, care and undersatnding being used in this way!

 

Good tho that you are caring

[kim]

Chemar,

 

I have to ask you this question, and I respect your opioion a lot.

 

Why do you think there is a difference in genetically inherited TS and kids who have vocal and motor tics for more than 1 year, with no family history. Is it not possible that the suceptibility is just greater in a certain family line? There are so many sources of toxins, maybe mercury in fish, there are toxins in soil, air, water etc. So wouldn't this explain why generations could exhibit tics. I have never been clear, as to why the matter is "different". It seems more people than not, cannot identify a family history of tics, but does it really matter, aren't we dealing with many of the same deficiencies anyway, in most cases? Do you think there is less chance of successful treatment if there is a family history? Just curious as to your point of view, we have no history of tics on either side, that anyone is aware of.

 

As to a neurologist "diagnosing", I had a pediatric neuro diagnosis my boys. The only test that was ever done was the strobe-seizure test on oldest son. Other than that, he went from the symptoms which you described above. As far as I know, and I haven't studied this at all, Dr. Tourette was the first DR. who identified this disorder as being a medical condition (and thanks to him!) I don't even know if this one year thing was his criteria, or if it was added by main stream Dr.s later. I'm also wondering if he suspected a genetic component, but in his day, he wouldn't have had access to the testing we do today. It just kills me, that these kids seem to have so many common issues like high yeast levels, allergies, repeated viruses etc. I just wish someone would consider a metabolic disorder.

 

I have to keep reminding myself how grarteful I have been, when DRs. have saved a love one from a devastating condition. I think Dr.s who really study tics, are hard to come by.

 

Again vent space, and certainly not aimed at you! The genetic question is just one I have wondered about many times.

[Chemar]

Hi Kim

 

I have long said that I believe that, even in people with genetic TS, something triggers the gene to switch on.....whether internal or environmental.

IMO, the only clear evidence for genetic TS is a traceable family history, and the jury is still out as to what the initial trigger is to start the cycle.

 

Because we have a clearly traceable genetic TS link on my husband's side of the family, I honestly know more about genetic TS than any other manifestation of Ts or other tic disorders. I know other families with genetic TS and the similarities are clearly evident.

 

I do know however, that I have encountered enough people now with tic disorders that have been wrongly diagnosed as TS for me to realise how serious this problem is. frankly, when I hear of someone having tics and no family history of TS, I tend to lean toward a non-TS diagnosis, and feel that the root of the tics is more than likely in one or a combination of the things we discuss here.

For TS diagnosis, the conventional approach calls for the presence of BOTH motor AND vocal tics for a year...not just either or

 

And as to doctors and their diagnostic knowledge, I think we all agree here that, although we are thankful for the good that the medical community do, we are also alarmed at their lack of knowledge and/or acceptance of the root causes of so many neurological problems that can be traced to toxins, infections, allergens etc

 

As you know, my son's experience in the care of conventional doctors nearly killed him!

And he is clear proof that the alternative treatments are able to be used with great success in someone with genetic and fullblown TS.

 

hope that answers some of your questions

ask away if not

[kim]

Chemar,

 

Thanks for the thoughtful reply.

 

I'm wondering if you think my kids will be the first of subsequent generatons of Tourette Syndrome/Chroinc Tic? My boys have both had a vocal tic at one time or another, but usually a pretty short duration. I mis typed the "vocal or motor" in previous post, I did mean "vocal and moter".

As I have stated before, I have considered them to be pretty mild, although youngest has me more concerned about his progression.

 

Your statement about something triggering the gene to switch on, is what really interests me. I think it's so important for my son's to have knowledge about this to try to avoid the triggers with their own children.

 

I'm making a big fat folder of copies of info for both of them, for when they're older.

 

I have wondered if either myself or my husband would have had ticcy kids, had we not produced children together. I have read boys have a high percentage of ticcing if they have the gene, girls less likely to exhibit symptoms. So that would lead me to believe that I would be the gene carrier. This does not make me feel guilty, or upset, just trying to piece together if this is a certain genetic makeup, or truly a faulty gene/genes, and your familys situation would have me lean more toward-faulty gene.

 

Kim

 

Kim

[KJS]

I find this discussion very interesting. No tics on either side of the family here, as far as I can tell. Yet my daughter tics, maybe has since she was 3 and we just didn't recognize it as such. By that age I don't think she'd ever been on antibiotics nor had a significant illness. No other symptoms of anything we'd consider allergies EXCEPT to the metal rings of the snaps on the front of her "onesies" where they touched her skin as a baby.

 

Here's the thing that confounds me most - people on this forum talk about their or their kid's symptoms waxing and waning yet I haven't seen periods of improvement in my daughter's tics since they really took hold back in August. She tics every day. Yes, sometimes the frequency increases (like when she came home from a party where there was a disco ball). But there hasn't been an hour since August when she hasn't ticced. Any comments?

 

Thanks,

Karen

[Chemar]

Hi Karen:)

 

the waxing and waning associated with Tourrette Syndrome varies very much between individuals....but overall it is not indicative of all tics waxing or waning but rather of a SPECIFIC tic waxing and waning......so it is not necessarily that you will see tic free periods, but rather that you will see a particular tic diminish in intensity or disappear.

 

Have you done heavy metal, specifically mercury testing and elimination? I am assuming that your child had the regular vaccines. I have come accross a large enough number of misdiagnosed TS cases who have found mercury elimination to also cause tic reduction or even remission, for me to feel that this IS one of the major triggers for tics, whether it triggers the TS gene, or some non-specific tic disorder.

[Ronnas]

Interesting discussion and thanks for the great reply Chemar!

 

The topic of whether there is a family history of tics interests me. I will tell you that at one time I would have said...absolutely no way did we have a family history of tics...now I am not so sure.

 

My dad has passed away so there is no way I could ask him as are my grandparents. Really if I try and think back to when I was a child and around my family I would have had no idea if anyone was ticcing whether it was a uncle, aunt, parent, grandparent etc. Another example is that my mom's father died when she was a toddler...how would we ever know if that branch of the family had tics or even if her dad did?

 

My son has PANDAS and if I had never learned anything about PANDAS I would not have realized that I myself had some symptoms of PANDAS as a child which I grew out of as I became a teenager. I never ticced but I think I had some quirky, OCDish kind of stuff. Many of us who post are moms...when you look at family history do you focus on tics or OCD too? From my research it seems that girls show more OCD symptoms (I think this includes anorexia) and boys more tic symptoms.

 

As well I think as parents we are just so much more aware now and what we find alarming may not have even been on the radar of our parents or grandparents. I know if I said to my mom..."I think I was a bit OCDish as a kid"...she'd think I was totally out to lunch. When questioning grandparents etc about tics they may not even know what a tic is...they could see a tic their grandchild has such as head jerking and say "well nope none of my kids did that"...but they might not even think to say..."well he did scrunch his nose alot" because they do not realize the varibility in tics.

 

My husband's cousin has a son that tics and they are nothing like my son's tics but if it were not for the fact that my husband has a close family and they live near us...I don't think we would even know he tics as well.

 

Genes definately play a big role but I think environmental triggers such as strep in my son's case or allergies in my husband's cousins son's case...I think this was the case in past generations as well...but I think our environment is just soooo much worse now in terms of what our kids are exposed to which may be the reason why our kid's tics seems more intense now as opposed to past generations.

 

Well i hope I made some sense!

[KJS]

Hi, Cheri,

We have not done any testing yet. It sounds like mercury is a big factor for many people so I've put it on the list of things to test for. Once we commence testing, does it make sense to do it all at once? I'm thinking of food sensitivities, heavy metals and yeast. I hate to keep dragging my daughter from place to place and don't really want her blood drawn more than once unless absolutely necessary.

 

I understand what you're saying about waxing and waning. Since the eye-rolling tic began last August it has never gone away and barely diminished. Do some tics persist?

 

We paid a visit yesterday to a pedi physical therapist in hopes of relieving the pain our daughter experiences in her upper back as a result of the chin-thrusting tic. After a thorough evaluation by a very nice & caring guy (the PT) we left the office with about 8 exericises to do on a rotating basis. They are geared toward improving posture, keeping muscles from extending too much on the one hand and contracting too much on the other, and toward strengthening the upper back, neck & shoulders to help keep everything in proper alignment. My husband and I were pleased with the visit but my daughter was very quiet in the car on the way home. She's disappointed that this won't help her tics to go away and insists that the pain is not the issue - it's the movements that cause the pain. She's right, of course, but we believe exercises will help her to feel better.

 

Tomorrow is our appointment with the occupational therapist who practices using the HANDLE model (www.handle.org). The activities she gives us will, we hope, reduce the tics. Amazingly, the physical therpist is going with us to this appointment because he is so interested in the approach. Wish us well!

 

Karen

[ad_ccl]

Hi Karen,

 

I have been meaning to respond for a couple of days but I do not know where the time goes. Anyway I wanted to respond to your question about persistent tics. My son was diagnosed with PANDAS in August after an overnight explosion of tics. Prior to that when we look back over the years we have always been concerned about a chronic cough that he has had since the age of 3, it was dismissed by our previous ped. as a transient tic or some behavioural thing due to a new sibling arriving, so we just accepted that and went on, looking back every once and a while he would sniff for a few weeks, or do some weird eye stuff for a few weeks, whenever we went to that previous ped. she would dismiss these things as a transient tic type thing. When we switched ped (for many reasons) I revisited the transient tic stuff with him, it just happened to be at a time the eye thing was going on, he looked at his eyes and they were very red (previous doc did not bother to check) within a couple days on anti-histimine drops his eyes were fine again. The cough continued. This doc had my son checked for asthma etc and also had him on antibiotics to rule out infection - it so happened on day 3 of the antibiotic the cough went away but came back when we could not get the rest of the meds into him as it was so foul tasting. Anyway to make a looong story somewhat shorter, after the diagnosis of PANDAS and the huge onslot of tics, all kinds that would not be mistaken for anything but severe TS, the antibiotics kicked in and by day 3 tics were reduced by 80% - we went on and off antibiotics several times and each time he went off them the tics would come back full force but eventually even when on the antibiotics tics were up and down with illnesses, the cough always stuck around. I at this time was happy to live with 'just the cough' and vowed never to complain about it after seeing how severe tics could be. By January we started to look 'outside the box' and luckily I had found this site a few months prior. I was really still hoping the antibiotics were the answer for my son and was even looking into the plasma exchange and IVIG treatment. Scary stuff. Anyway we tried just for fun eliminating milk after I read a thread here on food sensitivity and that seemed to be the most common food listed, once off the milk his tics just went away - we had also started vitamins so I attributed it to the vitamins being still so skeptical of the food stuff. He asked to go back on regular milk and we let him and within days he deteriorated again. We decided to do the ELISA testing and it confirmed a serious food intolerance to milk as well as gluten, eggs and soy. At this point he was doing so well off milk I questioned if we really needed him to go off gluten as well. His tics were very subtle at this point, nothing other's would notice. My doctor suggested I try going off gluten as he said 'you never know how much better he could be doing" well, he was right. The teacher noticed a change in his focus etc at school and the subtle tics also went away. His chronic cough is completely gone! Even with the last few illnesses he has had the cough is never chronic. When I say chronic I mean chronic - from ages 3 to 6 he always had a cough and at times it was once every couple of minutes at times worse and sometimes a little better but always there. It drove me crazy. To add to it my husband who is asthmatic also had a chronic cough. He said there was no way it was a tic as he could feel phlegm being kicked up when he coughed and it was uncomfortable. His cough had been around for as long as I had known him - it had never bothered me until my son started and I blamed him for it. Anyway....again sorry for the long story, my husband did the ELISA testing and was allergic to all the same things plus a few more things. He cough is almost 100% gone now that he is off all the offending foods. His asthma symptoms have also improved dramatically. So, I cannot remember if you have done food elimination of any kind - I think you started feingold which I am not very familiar with. I just wanted to give you some hope that maybe there is something as simple as a food that is causing the chronic tics, and if so a food she is eating daily so you are getting no break from the tics. My son drank 6 glasses of milk a day, ate cheese strings, minigos, and ice cream daily. All things that would have been causing the chronic cough. We saw a dramatic change in him within a week of being off the dairy - probably within days. Again a few weeks later when we went off gluten the teacher noticed a difference within the week. I read something by Doris Rapp about looking at your child's 5 most favorite foods and that is probably what they are allergic to. Milk for my son was obvious. It just seemed strange to me as I associate allergies with something someone does not like, ie my husband always hated the smell of peanuts and he is allergic to them. I never thought food allergies could cause anything but upset stomach, hives etc. Now I know they can cause tics.

 

As an update my son is doing well, only a tiny nose twitch left from his latest illness, I think his last illness ended with the same twitch which is actually cute and no one would think of it as a tic. He is seeing a neurologist next Tuesday in follow up to the possible seizure activity. I am hoping to have a doctor interested in the fact that he seems to have the equivalent of photosensitive epilepsy but that he gets tics instead of seizures. ( I think the photosensitivity is the result of being on 5 months of heavy antibiotics - not sure what was depleted to cause this - but that is my gut feeling, he never had any problems with photosensitivity prior to the PANDAS - and it only became obvious to us in December - although that was after Claire suggested it - so maybe it was there since the PANDAS diagnosis but we just did not know to look for it - again many thanks to Claire in guiding us so well) He is happy, looks healthy and is doing great in school - he just tested as reading above his grade level ( can you feel me beaming with pride) I feel in so many ways he has come so far, it was only in October when we actually told the school of his diagnosis, hoping it would go away and not wanting him labelled we did not tell them. By October when he was off the antibiotics for a few days he fell apart and the teacher could not put her finger on what was going on and wanted to meet with us in part because she had to advise he was not reading at his grade level and his report card would reflect that. So...to have him reading above grade level is so wonderful.

 

Marie, I am amazed at your juicing knowledge - I did check out the juicer site - holy expensive batman!!!! I did try it but the kids did not like it, but would like to try again with different recipes, I really do feel so limited in time, the baking alone is crazy - plus the 16 month old into everything. Life is very crazy right now and I think juicing would put me over the edge! With hope in the fall when I have two at school and with hope a baby napping while they are at school I will be able to try again. I do continue to read here every day and wish I had more time to respond.

 

Ronna I have been thinking of you and hoping the final months of your pregnancy are going well. I am exhausted just thinking about you!

 

Claire, in case you are popping in here - I hope things are going well at your homefront and that you are keeping busy with work and that your son continues to do so well.

 

Marina and Dara I have not seen any posts from you - I hope no news is good news.

 

Daniel, thank you for all you are contributing. I enjoy reading all of the links.

 

Kim - hope things are going well for your guys.

 

Wishing everyone all the best.

[kim]

ad ccl,

I really enjoyed your post. It reinforces how I strongly believe my youngest son needs to be off of milk. I have been trying the enzymes, AFP Peptizide(help with gluten and caisen breakdown) but since our trek to the allergist, have been afraid to continue until I'm sure nothing in the allergy meds are time release.

For the past couple of days, I have been trying to plant my flowers, clean house(drag) shovel out car, and get my life somewhat back in order. Someone said they felt like a poster was 'spinning' here once before, I feel that way right now. My oldest son is doing great tic wise. The Zyme Prime really seems to help in the elimination dept. even in a very small dose. This is my carb child, who take Bonnies vits. Didn't notice much with the sugar/dairy king, but he took such a small amount of the peptizye that I would not have expected to see much.

The allaergist appt. was interesting. Youngest reacted mild/moderate to cat, mold dust mite- oldest with the night time itching, was an explosion. You should have seen his back after the scratch test. WOW, grasses, mold, two kinds dust mites, trees, just about everything, no wonder he was itchy. Youngest had really mild peanut reaction, but the Dr. said so mild don't worry about it, wonder what the elisa test would show, peanut butter is one of the few foods he eats. No other food allergies showed with scratch or injections for either son. I was hoping to get some clue on foods, but a sensitivity should be better than a full blown allergy, so maybe this is still good news.

I think I posted we came home with Singulair, zyrtec,zantac,nasonex and allegra.

My insurance change, doesn't look that promising, to get 60% coverage on testing, I would lose office call coverage, and anything to do with allergies, however I would'nt have to worry about referrals. I'm thinking I'll just stay with current coverage, and pay for testing myself. I should have waited and had a Dr. order the Great Plains Oat test for yeast, I paid almost 200. for the metametrix, and they're now saying 3 to 4 weeks, and I don't feel that great about the reliability of that test. Oh well, one day at a time.

 

Kim

[ad_ccl]

Hey Kim,

 

I was just looking back at some posts and remembered your question about gradual onset of PANDAS. I have thought a lot about my son, and while he had a definite sudden onset of severe symptoms that occurred when he had complained of a sore throat the week before and his titers were at 700 and later at 1200 over the years there were increases in tic like stuff going on as I mentioned, wierd eye stuff, sniffing, etc. The day I took my son in to the ped in August for no other reason other than something seemed off to me, his personality was changing, lacking empathy ( very unlike him) , grumpy, very emotional, none of his clothes were fitting right, pale there was a little more tic stuff going on looking back but at this point I was just trying to accept it as a transient childhood disorder that would pass - he had no other problems, behavioural or educational, was well liked by his peers and good in sports etc. (also very cute - had to add that as his mother) So nothing he was doing was impacting him - my doctor in listening to all I had to say ( he is so great that way) he asked about the sore throat and at first I said no - he did the swab and blood work anyway ( the time we were in the office the doctor even noted an increase of tics starting- it was my husband who reminded me that he complained one night the week before at the cottage his throat was sore - we gave him some medicine and did not hear about it again - my concerns were that often in the morning he would go out in shorts and t-shirt and come in feeling cold - he is a kid who would be happy in a Canadian winter wearing nothing more than a t-shirt and jeans so I assumed something was up - he also looked pale. The doctor told me about PANDAS and suggested it may be the problem, he offered me the choice of starting antibiotics right away based on his red throat, swollen glands and appearance of strep - or waiting for the results of the strep test. I opted for taking the antibiotics, It was the following morning when we continued to see an increase in tics, then he went to a friends for an hour while we packed the car for a trip, when I went to pick him up he was almost convulsing. We went on the trip to see a new baby and within minutes of arriving my husband had to take him out of the house, he was gasping, coughing, twirling his hair, all sorts of stuff. I won't go on with the details but that day things got worse by the minute. I called the doctor shocked by what I was seeing, - had I not seen the doctor the day before I would have been going straight to the ER, he advised to give the meds 72 hours to work - grade one was a week away and I was besides myself. Anyway - within the 48-72 hours the tics pretty much disappeared as quick as they came. Late that week he went to get a hair cut which we could not have done a few days earlier as his body was in constant movement. There are times I wish I had videotaped him - and I did take out the video several times but did not have the heart to tape him - I wondered what value it could have as I did not want him or us to be reminded of what kind of shape he was in.

PANDAS is a sudden onset of tics - but I believe can occur with or without a previous tic disorder. Since this all seems to be immune related I would think that with each immune attack be it cold, virus, food etc that the immune system gets weakened and you could see more tics and then the final assault being the Strep puts the immune system over the top. That has become somewhat my theory - my son was chronically sick with ear infections from 15 months to 2 years - he had a few infections previous to this as well, but from 15 months he would be on antibiotics for 10 days and the day he was off them have a fever again and back on them the next day. Since he had the surgery for ENT - he literally was not sick a single day - no runny noses, no colds, never off school, no fevers, I feel like instead of showing normal symptoms of illness he showed tics. The increase in cough, or sniff or weird eye stuff. Since January when he has had an increase in tics he is also starting to show real symptoms of illness, he has had a fever, a runny nose, a real cough, feeling weak etc. I am not sure what all of this means or if it is of any help. Really only my observations and my attempts at putting it all together. The other interesting thing is since 3 he has always had a very obvious enlarged lymph node on his neck - it only went away once off the milk - and each illness since January, or increase in tics had coincided with his lymph node being enlarged - it is a clear indicator his immune system is being taxed.

 

I understand your feeling of spinning out of control. I look back over the last 9 months and am not sure how I am still standing. I think I am struggling more now as the adrenalin has worn off - I feel confident that my son will be 100% and I did not have that before. I have now seen him 100% tic free for periods of time and my biggest fear was that PANDAS had caused permanent damage to his basal ganglia. I am currently struggling with keeping my house tidy with three young children, there is soooo much laundry - and toys and adding in baking bread and muffins and treats etc.

I really think the ELISA testing was so worth the money for us. But the money does add up, in the end we tested all 5 of us and it is not covered by our insurance. My middle son who does not tic but eats terrible and has always been small is having a growth spurt since being off wheat and dairy - he used to poop 5 times a day so food just went right through him - he eats no more or less but poops only once a day. He is so happy - he has always been pretty happy but he is even more of an adorable free spirit than ever. The baby once off milk started sleeping through the night again and being much more content through the day. He was only on homo milk for a few weeks before I finally put the dots together. I had assumed he was teething, or had a cold etc. You would think it would have been obvious - one day I just thought what has changed since Christmas and bells went off - we had switched him to homo milk.

If you cannot afford the ELISA testing right now you could always try just a few days to a week going off all dairy - I think it was you who said your son would only then eat cotton candy - but you may be surprised. My son was a terrible eater but did eat dairy so we let him have lots of it - I thought he would starve without it but his eating has improved 100% - he now eats meat ( never did before) will try veg. soup that I make, I bake with goats milk - pumpkin muffins - granola bars etc. I put flax seed in everything I make. My middle one is not eating as well but he is gaining weight, I think about 2 pounds in the last month - so what he is eating is staying with him.

Could you try a reward system? My 6 year old loved earning 2$ a day for not watching tv so much he asked to extend our contract. With the food we really did see a difference within days so it is not something you have to wait forever for. Just a word of warning - do not substitute the soy for milk - as I think I had told you before my middle child ended up with lots of problems with constipation when we put him on soy - ELISA testing later showed a high intolerance for soy. around 30-40% of kids with milk allergies are also allergic to soy.

 

Good luck. And you are right, a sensitivity is much better than a full blown allergy.

 

Look forward to hearing updates.

[KJS]

ad_ccl,

Wow, that was some amazing note you wrote in reply to my question about persistent tics! I learned so much from what you shared. The part about your husband's chronic cough struck a chord with me because my husband has been clearing his throat - often - for YEARS! I can always tell within a few minutes when he's entered a big room because I will hear his throat-clearing. Not sure I'll be able to convince him to get tested, but it sure is interesting stuff.

 

I did read parts of the Doris Rapp book and remember the thing about the 5 favorites being very likely to contain one or more problem foods. If I had to guess right now I'd say it could be wheat for us because just about every one of my daughter's meals contains some. She eats dairy but not in large amounts and not every day.

 

I must say, though, that for all this great information and all the encouraging success you've had by eliminating certain foods I'm still feeling quite confused. Here's why...

 

Today we paid a visit to an occupational therapist who is trained in the HANDLE approach. You can read about it at www.handle.org. She did a full evaluation on my daughter that was fascinating to watch and lasted for about an hour. During the eval she asked us some questions and we shared a lot of information with her. We went away for about and hour so she (the OT) could process what she'd learned and develop a plan for my daughter.

 

When we returned, the information we received was just mind-blowing. She spoke about the body's various sensory systems and described the status of each system in our daughter. Things she said just sent light bulbs popping in my mind and in my husband's. They explained things we've observed but never understood, like why she sometimes just has to fidget in a chair or twist something in her hands while she's listening to us or to a teacher. The answer is, in part, that she HAS to do these things to help calm down her overly sensitive vestibular system. It's not unlike what many autistic children do to calm themselves, just not as pronounced in our daughter. We learned that our daughter's dominant eye is the one opposite her dominant hand. Though this is true for almost 25% of the population it does mean that the brain has to work a little bit harder almost all the time. We found out that her eyes track well, but not easily - she really has to work at it and this is an added stress to her system. Although the overt signs that she showed as a very young child have disappeared, she is still overly sensitive to tactile stimuli and that adds yet another stress to her system. There were many such revelations and we were just amazed. No wonder she tics - her body's being stressed in so many subtle ways IN ADDITION TO whatever stress she, her parents and her teachers place upon her as part of everyday life!

 

We left the visit with over a dozen activities & props, some that we have to do with her and some that she can do on her own. They are intended to strengthen different aspects of her system, to help with the left brain, right brain integration, to strengthen the eyes so that tracking is easier to do, to calm the vestibular system so she can keep her body more quiet and still be comfortable and focused.

 

Just as the food elimination plans make a lot of sense to me and I know you and many others have seen tremendous positive changes in your children related to diet, this HANDLE approach & the findings from this evaluation also make a lot of sense. So the parents' dilemma is what to do first, or next. It's enough to make anyone's head spin!

 

We are planning to try the activities recommended to us by the OT to see what happens. It doesn't seem that any of them can do any harm. We will continue with the Feingold diet as well, since we've made such a commitment to it over the past 3 weeks or so. If we see a reduction in tics I realize that doing two things at once might make it harder to know which one was more influential. But I'm sure we'll be able to sort it out later. Right now we just want to see some relief. It will help us all stay motivated. Once we've given these things a fair shot I may do a trial of wheat elimination to test my own theory. Many people who post here have found that there are different things that work at different times. We, too, may discover something similar. Complicated, isn't it?

 

Thank you again for your thoughtful replies. You've been SO helpful! Continued good luck,

Karen

[quan_daniel]

Karen,

That was a good god informative article.

Your kid just sounds like my kid..

 

oversensitive..I touch him a little..he tells me he is ticklish..even in area that I don't think it can be ticklish.

 

Where can I find more information about this type of therapy..

Like what type of excercise should the child do..?

 

I think your light bulb holds so many answer.

 

What type of OT is that..

 

where Can I find one?

 

thanks

 

ad_ccl,

Wow, that was some amazing note you wrote in reply to my question about persistent tics!  I learned so much from what you shared.  The part about your husband's chronic cough struck a chord with me because my husband has been clearing his throat - often - for YEARS!  I can always tell within a few minutes when he's entered a big room because I will hear his throat-clearing.  Not sure I'll be able to convince him to get tested, but it sure is interesting stuff.

 

I did read parts of the Doris Rapp book and remember the thing about the 5 favorites being very likely to contain one or more problem foods.  If I had to guess right now I'd say it could be wheat for us because just about every one of my daughter's meals contains some.  She eats dairy but not in large amounts and not every day.

 

I must say, though, that for all this great information and all the encouraging success you've had by eliminating certain foods I'm still feeling quite confused.  Here's why...

 

Today we paid a visit to an occupational therapist who is trained in the HANDLE approach.  You can read about it at www.handle.org.  She did a full evaluation on my daughter that was fascinating to watch and lasted for about an hour.  During the eval she asked us some questions and we shared a lot of information with her.  We went away for about and hour so she (the OT) could process what she'd learned and develop a plan for my daughter.

 

When we returned, the information we received was just mind-blowing.  She spoke about the body's various sensory systems and described the status of each system in our daughter.  Things she said just sent light bulbs popping in my mind and in my husband's.  They explained things we've observed but never understood, like why she sometimes just has to fidget in a chair or twist something in her hands while she's listening to us or to a teacher.  The answer is, in part, that she HAS to do these things to help calm down her overly sensitive vestibular system.  It's not unlike what many autistic children do to calm themselves, just not as pronounced in our daughter.  We learned that our daughter's dominant eye is the one opposite her dominant hand.  Though this is true for almost 25% of the population it does mean that the brain has to work a little bit harder almost all the time.  We found out that her eyes track well, but not easily - she really has to work at it and this is an added stress to her system.  Although the overt signs that she showed as a very young child have disappeared, she is still overly sensitive to tactile stimuli and that adds yet another stress to her system.  There were many such revelations and we were just amazed.  No wonder she tics - her body's being stressed in so many subtle ways IN ADDITION TO whatever stress she, her parents and her teachers place upon her as part of everyday life!

 

We left the visit with over a dozen activities & props, some that we have to do with her and some that she can do on her own.  They are intended to strengthen different aspects of her system, to help with the left brain, right brain integration, to strengthen the eyes so that tracking is easier to do, to calm the vestibular system so she can keep her body more quiet and still be comfortable and focused.

 

Just as the food elimination plans make a lot of sense to me and I know you and many others have seen tremendous positive changes in your children related to diet, this HANDLE approach & the findings from this evaluation also make a lot of sense.  So the parents' dilemma is what to do first, or next. It's enough to make anyone's head spin!

 

We are planning to try the activities recommended to us by the OT to see what happens.  It doesn't seem that any of them can do any harm.  We will continue with the Feingold diet as well, since we've made such a commitment to it over the past 3 weeks or so.  If we see a reduction in tics I realize that doing two things at once might make it harder to know which one was more influential.  But I'm sure we'll be able to sort it out later.  Right now we just want to see some relief.  It will help us all stay motivated.  Once we've given these things a fair shot I may do a trial of wheat elimination to test my own theory.  Many people who post here have found that there are different things that work at different times.  We, too, may discover something similar.  Complicated, isn't it?

 

Thank you again for your thoughtful replies.  You've been SO helpful!  Continued good luck,

Karen

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