I need some help -- my son has many tics

[brett]

Hi, I just found this site and wondered if there are any parents out there that are experiencing what I am going through. About 6 weeks ago my 9 year old son started having difficulty sleeping, waking up at night, exhausted all of the time. Then his hands starting to move a lot, moving fingers, twisting fingers, etc. Then horrible mood changes/irritability. We had no idea what was going on. Then 3 weeks ago, explosion of movements throughout the entire body, twitches, spasms, everywhere on his body, head, shoulders, neck, teeth, tongue, hands, fingers, legs, feet, toes, back, it looked like he had parkinson's disease. It also happened while he was sleeping. He has seen 2 neurologists and right now is at the hospital having a 24 hour Video EEG sleep study. Already had one regular EEG which was normal. Because he could not function due to out of control involuntary body movements and hyperactivity, he was placed on Tenex (guanfacine) which has reduced overt symptoms but still a lot of spasms/twitching, it never stops, constantly moving with no break. I did not think that tics could happen non-stop with no breaks all over the body, seemingly everywhere at once? At first doctors said PANDA and put him on amoxicillin for 1 month; however, all blood tests normal, no strep either, they took him off amoxicillin after one week. Still with the sleep problems, very very moody, irritable, lethargic, don't know what side effects these might be from Tenex. Right now they are leaning towards tic disorder. Out of nowhere this happened to my healthy son, never any medical problems, never any sleeping/mood problems. I feel like I am on an emotional rollercoaster from ######. My poor child says his body feels weird and he cannot stop the movements even if he tries. It is as though a different child has taken over my child's body. Can anyone advise or respond? Thank you. Brett

[ad_ccl]

Hi Brett and welcome...so sorry to hear about your son - my first thought was PANDAS as well, due to the sudden onset of the tics - and the change in mood/sleep etc you are describing leading up to it. What blood work did they do? There are two for step - Was it for strep? or did they just do the throat swab? Sometimes the swab is negative even though strep is there. Ronna's son who has PANDAS did not respond to the amoxycillin but did respond to Keflex.

Perhaps you could clarify if they did the strep titers test - as I guess that would rule out PANDAS - but could there be another illness that is triggering it? Maybe it is worth trying a different antibiotic?

When my son had the explosion of tics he did have tics all over his body all at once - it was horrific - non stop - more than one a second, complex motor and vocal tics. He did not tic when sleeping - I would know the minute he was asleep as he would stop making sounds.

I know how horrible this is for you and your son - the unknown is so difficult. I am sorry I do not have much in terms of advise - but I wanted to respond to welcome you.

I am not sure if it would be worth you getting in touch with NIMH - I have done this once before - sent an e-mail - and did get a response that was helpful - they did not give out specific medical advise but gave me some good resources. All of the symptoms sound so much like PANDAS. Not sure if Ronna is checking in - and if her son ticced while sleeping.

 

I have no experience with TENEX - but understand the wish to try something to help him. I know the feeling of helplessness as you watch your child become a different child before your eyes. My thoughts are with you and him.

[mommaonamission]

I'm so sorry Brett. You must be worried out of your mind. My son is 12 and had little tics for years, and one day a month ago due to PANDAS, he started uncontrollable shouting that has been non-stop and hard to even take him in public. I know what you mean by one day just "taking over." He is a very different child than he was a month ago. Thank God I haven't had to hospitalize him. That must be very hard. I'm still learning about Tourettes, but there seems to be some very experienced and educated people on this board. I hope someone can give you a little insight. Have the docs tested him for allergies of different kinds. It sounds like something triggered it. Most tics subside during sleep. My son will still tic while dosing off, but once completely asleep, things are finally silent. But the second he wakes up, he goes off like an alarm. I certianly hope the doctors can figure out what is going on with your son. If those docs can't give you answers, look to others until you get what you need. I will pray for you and your family.

 

Hi, I just found this site and wondered if there are any parents out there that are experiencing what I am going through. About 6 weeks ago my 9 year old son started having difficulty sleeping, waking up at night, exhausted all of the time. Then his hands starting to move a lot, moving fingers, twisting fingers, etc. Then horrible mood changes/irritability. We had no idea what was going on. Then 3 weeks ago, explosion of movements throughout the entire body, twitches, spasms, everywhere on his body, head, shoulders, neck, teeth, tongue, hands, fingers, legs, feet, toes, back, it looked like he had parkinson's disease. It also happened while he was sleeping. He has seen 2 neurologists and right now is at the hospital having a 24 hour Video EEG sleep study. Already had one regular EEG which was normal. Because he could not function due to out of control involuntary body movements and hyperactivity, he was placed on Tenex (guanfacine) which has reduced overt symptoms but still a lot of spasms/twitching, it never stops, constantly moving with no break. I did not think that tics could happen non-stop with no breaks all over the body, seemingly everywhere at once? At first doctors said PANDA and put him on amoxicillin for 1 month; however, all blood tests normal, no strep either, they took him off amoxicillin after one week. Still with the sleep problems, very very moody, irritable, lethargic, don't know what side effects these might be from Tenex. Right now they are leaning towards tic disorder. Out of nowhere this happened to my healthy son, never any medical problems, never any sleeping/mood problems. I feel like I am on an emotional rollercoaster from ######. My poor child says his body feels weird and he cannot stop the movements even if he tries. It is as though a different child has taken over my child's body. Can anyone advise or respond? Thank you. Brett

[brett]

Thank you so much for responding, it does make me feel so much better to know that there are others out there going through what I have been going through. In response to some questions you had, yes, my son did have the strep titers done, those were the only blood tests done, and they were all well within normal range. That is why they took him off the amoxicillin. We are really trying to figure out what could have triggered all of this, at first we thought it could have been stress? As he began this school year and seemed so much more stressed out than usual. I will continue to think this over. It is just so hard to understand and for the mind to process, especially when I watch him sitting there playing a video game or watching tv and his body is just moving all over so severely. My heart breaks for him but I am trying to hold it together until I get some more definitive answers from the dr. , at least then I know what I am dealing with and can try to move forward from there. I do find the posts about vitamins/diet/natural treatments ver interesting and of course would be willing to try anything to help my son. I will post results when I have them and will ask for more advice. Of course anyone that can help me please respond, it is so much appreciated. Brett

[ad_ccl]

Hi again,

 

There has been a lot of success by many on this forum including myself - of eliminating all screens - tv., video etc - that was a CLEAR trigger for my son - he would tic uncontrollably while watching tv - Claire who used to post here advocated the kids be off ALL SCREEN for 7-10 days to see if there is a difference - most found there was - we also found driving in the car a trigger - all things related to photosensitivity. My son now watches unlimited LCD tv - we do try to somewhat limit it - but not like the beginning where he got to watch for 15 minutes. There had been a list of triggers somewhere on this site - and sometimes an obvious trigger is easily missed until it is pointed out. My son still reacts to flourescent lights - due to his photosensitivity - not nearly as badly but the school accommodates by having the lights off in his classroom. Isn't it like some switch was turned and all of a sudden you have a new kid - and wish so much for the "old one" back - you will get him back - and better than ever. Maybe there were several triggers that just saturated him. Did he have any difficulties at all prior to this? While my son had a sudden and severe onset of tics - the years leading up to it he had a chronic cough - which we assumed was a transient tic - so many boys have transient tics - anyway - through this journey we have discovered that he had many food allergies - and once he went off the milk his cough went away never to return, it has been almost a year now with no cough, and his cough was chronic for 3 years - and I mean chronic! He was also a bit of a challenge to parent, can't really put my finger on what it was - but he was not easy going, and once off the foods - he became a joy to parent, his focus improved dramatically in school - we found so many benefits - more than just resolving the tic issues.

I guess what I am trying to say - is that maybe there have been other triggers present as with my son - which were managed by his body until the onslot of the strep infection. Maybe there are other things like the tv which are now triggering him when it did not before as his body was not under the severe stress it is now. Someone wrote to me early on in this journey of mine that the Immune System Is Key - I really believe that is true when it comes to any kind of tic syndrome. The tic is a symptom of something bigger - a message that something is not righ. Your job is to figure it out. My advise as mommaonamission said, was keep searching until you find the right answers - if I had just sat back and listened to the doctors we would be in a very different place than we are now- I have been lucky to have great doctors who were open to me showing up with pages of anecdotal info - I was on a mission - and it was worth every second of my time. Research all you can and you will find the answers.

 

The woman who runs this site has just published a book which you can order at the top of the page - I got mine last week - and it is a great resource for parents - very clear and easy to understand - not full of medical jargon.

 

I do really recommend you cut out the screens - you have nothing to lose in trying and it might give him some relief.

 

Mommaonamission - did you decide to cut out the screens?

[brett]

To Ad Ccl, thank you so much for your advice. It is interesting what you write, as through the years, particulalry when my son was younger (4-5-6 years old) he did have coughing that would go on and on even thought he was perfectly healthy, and then it would just go away. Also throat clearing. I would always say to my husband, I think that is a tic, he would say no, no, no. This past summer for 7 weeks my son was at sleepaway camp, non-stop sports, not much rest during the day, brutally hot bunk, lack of sleep at night. When he came home from camp at the end of August he was truly exhausted, which never really went away. In September we were concerned about exhaustion, also started this wheezing noise in his throat, took him to pediatrician (she ran blood tests to rule out Lyme disease, thyroid, etc, anything that could have been causing his tiredness, all came back normal); then the sleeplessness started, then throat clearing, we took him to ENT dr., he couldn't find anything wrong. In hindsight, the wheezing, throat clearing were probably tics. Then school started, very stressful, my son does not deal well with stress as is, a lot of sports, homework, heavy schedule. Then moodiness, sleep problems, vocal tics went away but then hands, then the explosion of tics. I wonder if the summer and the lack of sleep/rest could have been the beginning of all this? I will talk with my husband tomorrow and show him your advice about no screens for 10 days, my son does watch a lot of tv and play a lot of video games. He will freak! But I don't care. The medication has helped tremendously in reducing symptoms but at what point do I say I don't want him on this anymore? It is an anti-hypertension medication and I'm sure that is not so good either. How do I go about getting him tested for food allergies? Because I will do that too. My son is at the brink, he is trying so hard to handle being dragged to all of these dr's/hospitals, he is so sad/moody. You are so right, one day my son is great, then, another child altogether. I do have hope everything will get better. I will order the book as well. I will post with new info as it comes, please look out for my new posts as your responses are so helpful. Brett

[ad_ccl]

Hi Brett,

 

With the further info you have given it does sound more like what we went through with our son. We did the food allergy testing through a naturopath -(in Canada) it is IGg testing - for food sensitivities - delayed reaction - not the immediate prick testing. Our son was also a terrible eater so we did start supplements - but I really think the biggest impact was the food. No screens also really helped - we gave our son money as a reward for each day he did not watch the tv - he is 6 - so was thrilled with 2$ a day - it was interesting as after teh 10 days he was close to tic free so with his reward money we went to toyrus - we walked in the store and all of these tics started up - i assumed he was excited - it was after posting here about it that I realized it was the lights in the store - as later we went into a baby store where there was flourescent lights and the same thing happened again - and then we went to a toy store with incandescent lights and he was fine - so it was not the excitement.

You might want to look into PITANDS ( which my son also has) Pediatric Illness -triggered auto immune disorder associated with strep - meaning tics are triggered not just by the strep but by any illness. Again I think it all goes back to the immune system not being strong.

I think you are probably right to be cautious around the meds for such a young child - I am lucky that we never had to go to that and that the antibiotics worked well enough - although I understand giving him the meds.

The other trigger I am seeing with my son seems to be growth spurts - my doctor told me a few weeks ago the new age of puberty is actually 8 for girls and 9 for boys YIKES!!! Tics from what I understand can get worse during puberty - wonder if there could be any connection there as well?

 

A couple days ago I bumped my thread New Here for Sarah - you may want to read through it to see if anything there is helpful. I will keep an eye out for your posts - I do read most days.

[Chemar]

Hello Brett and welcome to Latitudes.

You have received excellent advice from Allison so I really have nothing to add there.

 

However something that stood out to me was that you feel things started going downhill for your son after the return from camp.

 

Many factors could have been at play there, including exhaustion, food, heat, stress etc. Something else to consider, which is often overlooked, is that your son may be dealing with a parasitic infection. This could range from a Candida overgrowth (internal yeast infection) to other parasites, and is really a fairly common condition causing all kinds of ailments, and especially prevalent in kids who have been in close contact with others like in a camp environment. Candida is best verified in blood and stool tests, while a broad spectrum stool analysis (like the one done by Great Smokies Laboratory) will yield info on any other parasites.

Aspergillus niger (homeopathic) is very effective in treating Candida overgrowth, especially when supplemented with Capryllic Acid, while one of the simplest yet most effective broad spectrum parasite cleansers is based on the Clarkia formula tincture of black walnut husk/wormwood/cloves.

 

Although their may well be other things like PANDAS, PITANDS or other things causing the tics, it is sure worth ruling out parasitic influence too.

 

Honestly, from what you are describing your son's tics and tremors to be, it really doesnt sound like Tourette's tics, especially with the VERY unusual fact that he continues the motions while asleep! As a point of interest, is he ever waking between 2-3am??

 

So many people have found benefit from careful diet and avoiding other tic triggers that it is worth pursuing that, as well as checking on the possible influence of photosensitivity to CRT screens and fluorescence. (tho again, the fact that your child's movements continue in the dark while asleep seems IMHO to not indicate that as a major factor.

 

If you do decide to do the "no screens" test, do just be very careful to not let your child feel a sense of "punishment" in having his TV, videogame time removed. This can sometimes cause enormous stress too.

If you have a computer with an LCD monitor, maybe try to allow time there as generally the LCD (non-flicker) screens do not cause the photosensitive tics. There are also LCD TVs now available

 

Here is that article that Allison mentioned on Tic Triggers

http://www.latitudes.org/articles/finding_triggers.htm

 

and here is the link for more info on Sheila Rogers' EXCELLENT book on the subject of natural ways to help with all this

http://www.latitudes.org/book.html

 

All the best to you