shaunms Posted March 6, 2013 Report Share Posted March 6, 2013 Hi Everyone I came across this forum while trying to do some research on my 6 year old sons recent wildly shaking of head and eye rolling behavior. Please watch a short clip I took of him yesterday and please give me your opinion on what you see or if you have ever seen something like this before. [substitute "XX" for "tt"] hXXp://youtu.be/2rwTt4iyJS4 I'm really not sure if it is a tic or really what is going on here. He is shaking his head a lot less compared to two weeks ago which cannot be seen in the clip but his sister has confirmed to me that she is still seeing him do it at school. In class he is constantly nodding his head and rolling his eyes, more than in the clip, about once every 10 to 15 seconds. We have asked him why he is doing it and he tells us that there is this feeling in his head and when he nods and rolls his eyes it helps him feel better, We have had his eyes tested which have come back with good results. We have taken him to the GP who has referred us to a paediatrician but they can only see us in 2 months which is going to be a very long wait. My wife and I are really taking some strain with what has suddenly started with him and she seems convinced his personality has changed a bit over the last couple of weeks to. He used to be an exceptionally good boy but of late he is not listening, struggling to sit still, has had a few tantrums when he could not make his bed and he seems to have developed some friendship difficulties at schoolto. On top of that he seems to be a very obsessive boy getting some thoughts in his head and not letting go. first it was Star Wars and now Ninjago, he seems to just always want to talk about it but it does not really go much further than that. Now I'm not sure if this could be part of it or just somethings some 6 year old boys do. He also has a number of Café au lait spots on his body and we have had him checked out a few years ago and we have been told that Neurofibromatosis is very unlikely but I'm not sure if all these things are related. I'm at a loss of what to do and would really like to hear from someone who has seen this before and to advice me as best they can. Thanks you so much in advance. Link to comment Share on other sites More sharing options...
blakes_mom Posted March 7, 2013 Report Share Posted March 7, 2013 My son had these same symptoms (head knod and eye rolling at the age of 5. Yes they are tics and in my opinion I would look into the diagnosis of PANDAS. Your son seems to have many symptoms of this including tics,OCD and behavior issues. You can find information about this on the pandas forum or pandasnetwork.org has some good information about this including physicians that can help. Let me know if I can help in any way. Link to comment Share on other sites More sharing options...
dsnow777 Posted March 7, 2013 Report Share Posted March 7, 2013 Hey man, Went through something similar this past September. Question, when the ###### seemed to hit the fan out of nowhere, was there any kind of sickness that preceded it all like a virus, cold, vomiting, anything? For us, our daughter had vocal hums/throat clearing along with eye rolling and a bit of head jerking at one point. It all came out of nowhere for us after she just came home from school one day and fell asleep at 5:00PM with a fever. She vomited and was sick for about 2 weeks after that and the whole onslaught of tics followed along with a huge personality change, obsessions, anger, tantrums, etc. Long long road since September. We've been to every kind of doctor you can imagine. I may have more advice or leads based on your response to the above. Or maybe you're experiencing something else. On an upswing.... tics aside... your boy seems like a great kid and with time this shall pass! I'll follow up with some stuff that has seemed to work for us on another follow up post but I'm interested to hear your answer to my main question above. Link to comment Share on other sites More sharing options...
Chemar Posted March 7, 2013 Report Share Posted March 7, 2013 Hi shaunms you really do need a doctor to identify the tics but yes, they do appear to be tics Although I agree you should possibly find out about PANDAS (tics and other neuro symptoms triggered by strep) at the same time MANY cases of tics have absolutely nothing to do with PANDAS or infections of any kind, so please do also check into other things too. Tics can be caused by Tourette Syndrome, allergies (food and environmental), teeth/jaw issues, flicker from TV/computer screens and a host of other things in addition to infections and other illness. Obsessions and compulsions and other behavioral changes can also accompany TS, not just PANDAS We have some helpful threads here (see my signature below) and also a great book written by Sheila Rogers on natural ways to help treat tics (http://www.latitudes.org/book.html) Finding a doctor who is clued up on all these things is really so beneficial as most just take the "it is TS, let's medicate" approach!. I hope you find the answers you need. Link to comment Share on other sites More sharing options...
msimon3 Posted March 7, 2013 Report Share Posted March 7, 2013 Shaunms, I agree with others here who say these are tics. Specifically, it looks like a complex motor tic involving the eyebrows and eyes, and shaking of the head. Your son would not be the first 6 year old boy to absolutely love Star Wars and Lego and want to talk about it all the time. It might be an OCD symptom if he is frequently unable to speak about other subjects without introducing Star Wars and Lego. These other symptoms you cited are also experienced by kids with PANDAS/PANS or Lyme Disease or some other infectious/immune pathology, with arguably less frequency among Tourette's that has non-infectious pathology (e.g. congenital): - change in personality - of late he is not listening - struggling to sit still - has had a few tantrums when he could not make his bed - and he seems to have developed some friendship difficulties Some key factors to consider: - Time of event. Did these symptoms all suddenly start one day? Did any illness precede that time? You will read many stories on this web site where children were okay one day, and then next day developed multiple symptoms suddenly -- a clear "before and after" of your child's behavior and symptoms. - The Café au lait spots. Were they present at birth, or have they developed over time? If over time, did they coincide with the other symptoms? Do they ever disappear and reappear or move? Several tick-borne and viral diseases cause rashes with atypical presentation. If the spots change over time, or disappear with steroid topical creams, then they are likely caused by an immune response to some sort of infection. Seek out a good doctor and keep looking for a doctor until you find the one who looks at these symptoms the same way you do. You may settle with more than one doctor, and that is okay and typical. Too often doctors will be dismissive, which in turn may influence you to be dismissive. Stay strong and vigilant, and you will find the cause. As you visit with doctors, consider pursuing immunological blood tests to see what is going on inside your child, and save those results for reference. Start eliminating causes as much as searching for them -- this may be a long process for you, and having early blood tests will be very valuable. Link to comment Share on other sites More sharing options...
Sheila Posted March 7, 2013 Report Share Posted March 7, 2013 Hi there -- Sure sympathize with what you and your wife are dealing with. Your son is super cute, and you seem to have a great relationship, so nice to see that. While I think most of our members would agree that he is experiencing tics, the cause of them can vary. It's a good thing you will see a physician who can help rule out any number of medical conditions that can cause tics and behavioral issues. If you are told the tics are hereditary and there is nothing you can do about it except medicate, our organization is here to say that is not true. If you notice, the name of our group is "comprehensive" neurotherapy. The reason for this is that causes of neurological reactions can be multiple, and approaches often need to be comprehensive to get the best results. Sometimes there is an underlying immune issue that is triggered by an infection. But at other times there is no infection. And even if one or more infections are identified, this is often only part of the overall situation. It's important to look at everything that could be involved, from diet to allergens, toxins, infection, and other influences. Please take heart that there are answers out there. A number of environmental issues can cause all the symptoms you mention, including for example, a significant mold exposure-- or home remodeling with new cabinets that outgas toxins (Just using these as a couple of examples). Once the immune system is reacting to something like these, then another harmful influence, such as bacteria or virus, or allergens and foods, can have a larger impact than they normally would. Things can start to snowball. Similarly, an infection can start first and weaken the system -- and then other environmental factors can increase the body's negative response. Just looking at or "fixing" one of these issues could help, but sometimes it won't solve the whole problem long term without a good comprehensive approach. The helpful links list that Chemar gave at the bottom of her post area includes a link to our article on common triggers for tics. (OCD and behavioral issues can also be set off by these, depending on the individual.) Try to go through this list and see if any ring a bell for you. If so, you and your wife could try to eliminate his exposure to them. If there are triggers within your control, hopefully things could calm down a bit as you proceed to look for other factors. See here http://www.latitudes...ng_triggers.htm Let us know if we can be any help with looking at these factors. Wishing you all the best. Sheila Link to comment Share on other sites More sharing options...
thundermonkey Posted March 11, 2013 Report Share Posted March 11, 2013 Hi, I concur with suggesting you check out Dr. Roger's book. There are a lot of triggers for tics discussed there. An easy and inexpensive step to identify any food sensitivities would be to try an elimination diet for two weeks - these are covered in the book. Best wishes Link to comment Share on other sites More sharing options...
Recommended Posts
Create an account or sign in to comment
You need to be a member in order to leave a comment
Create an account
Sign up for a new account in our community. It's easy!
Register a new accountSign in
Already have an account? Sign in here.
Sign In Now