smcdow6

After speaking to my sons neurologist they wanted us to bring him to the Childrens Hospital for a 48 hour EEG. The results show no sign of seizure activity. He is still having the vision changes. Since the color changes we are seeing a new tic. His whole body looks to be convulsing, he is unable to breath during these episodes and they are physically and emotionally draining for him. He did have these while at the hospital, one night he had well over 50. This has been going on daily for over two months now, the vision changes are quick and more of an annoyance- happening 1-5 times a day, the whole body tic is happening very often, seeing that 20-100+ times a day. The neurologist said that the eye changes were not tic related, but offered no insight as to what it could be.

My son had his eye appt today. The Dr. said his eyes look great, however, he is color blind. It is interesting to me that this is the first time he has ever had any issues with seeing color. He will be going into 4th grade and has had 2 prior eye exams and we have never had any idea that he was color blind. My father was color blind so it does make sense that he is, but its just weird to me that it has just now come about.

Thank you for your reply Sheila, Here is a little more about us... My son will be 9 years old next week. We live in Northern Michigan. Shortly after his tics started last spring I ordered the Natural Treatments for Tics & Tourette's book. It has been very helpful. Since his tics started he has not had a single tic free day. There are definitely many days where there are few and not bothersome but he normal has tics involving his shoulders, neck, and face many times throughout the day. Recently the tics that have been really bothersome are his eye rolling, when this is bad he will have the color changes, and his arms are extending and flapping. This is the first tic that he hasn't been able to easily cover up so he is pretty self conscious about this one. When this began we had no idea he was having tics, he suddenly started what looked like these convulsions in this shoulders and arms. The day I first noticed them he had a few episodes. I brought him to see his pediatrician who thought they were some sort of seizure and referred us to a neurologist, but the wait time was 2 months. Two days later they were almost constant throughout the day. Thinking he was having constant seizures we drove 4 hours and went to the Emergency Room at the childrens hospital where they had referred us. Thankfully the Dr there immediately told us that she did not think he was having seizures but was having tics. Because we had driven so far and it was the middle of the night they let us stay in an overflow wing and the neurologist that we were on the wait-list for saw us first thing in the morning and confirmed that he was having tics, not seizures. This was a sigh of relief, but then I had so many questions and unfortunately we were told the same thing it seems everyone else is told. There is nothing we can do, we don't know why it happens, we don't know how long it will last. We can put him on medicines that may control the tics but there is no cure and no guarantee they will work, we would just start with the least harmful and keep going from there. Because his tics were so intense and happening so often we decided that we would start him on Guanfaciine 1MG and see if it would provide him with some relief. The first two weeks he took this he was a zombie. I cried daily watching him fall asleep on the floor while he was playing. His once lively personality seemed so dull and wore out. But his tics did calm down. We brought him for massage to try to help with the soreness from the constant tightening/untightening in his shoulders, back, and neck. I read everything I could. Before this I had zero experience with Tics or Tourettes, I had to find something. I am not okay with the, we don't know why, there isnt really anything to do, just wait and see. We have no family history of Tics, he doesnt have ADHD, learning problems, OCD or any other common coexisting conditions. Looking back, I did notice a strange smile that he would do every now and again about a month before the "seizure" worry. I believe that was the first of this tics, I just thought he was making a funny face. Over the next 8 months his tics remained the same. I talked to the neurologist about alternative treatments and he disregarded them all. For a couple months in the fall he added a couple vocal tics. A cough and a sniffle. He then had a very intense period where his tics were happening very often and were very strong. He was very sore again, had a hard time sleeping. We called the neurologist to report the vocal tics and told him they were bothering him again and the medicine didnt seem to be helping anymore. He said to increase his dosage to 2MG a day. We went back through the zombie period and he started to have extreme anxiety. If I went out of his sight he would start panicking. Even at home I couldnt be on a different floor as him without huge anxiety. I thought it was the medicine and called his dr. The dr said if we wanted to go back down to 1 mg a day we could but he thought the anxiety was from the tics not the medicine. After a few days the anxiety went away and his tics were more under control. Im not sure if it was the medicine increase or the fact that his tics settled down on their own. After this we decided that he was still having these tics regardless of the medicine so we were going to stop giving it to him. We have tried some supplements, but didnt notice a difference. We live in a very rural area and Drs are very far way. I did call and make a phone consultation with a Naturopathic Dr who is only a few hours away. I would really like to get some allergy testing done, as well as check for yeast. I just have so much unknown and there is so much information out there I don't know where to begin. I am really hoping this Dr. will be able to provide some guidance as to where to even begin. I just ordered the book, Is This Your Child?, and have skimmed a few chapters. It looks like it will also have some good information for us. His eye appt is Thursday. Thank you for the thoughts about chemical exposure. After reading this I started thinking, he has been eating more fruits, especially plums and I haven't been able to find any organic ones in our area. I will be more cautious of that! He has only swam in fresh water lakes, not pools. I cant think of any other chemical sources. We use organic shampoo and body wash, but it isnt unscented. We have tried Epsom salt baths and magnesium supplements. After talking with the new Dr. I am hoping to get a good plan together. There are so many things to try but I don't want to try a bunch at one and then not know what is working and what isn't. I really feel like diet and the environment are going to be the answer for healing him. Its just getting it figured out. Thank you so much for your time and input!

Hi everyone, My son has had motor and vocal tics for just over a year. He is currently having a high incidence of tics in his neck, shoulders, arms, and eyes-both blinking and rolling. Yesterday was an extremely rough day for him with almost constant ticing. For the first time he complained that things that are green (trees, a green blanket, etc) were blue. He was able to vividly describe it. He said that the left part of the object was still green, but the right side of everything was a bluish color. When he woke up today he stated that his vision was normal again, until the afternoon he told me that after having some bad eye rolls the colors changed again. It seemed to come and go today, with the eye rolls seemingly the trigger. Has anyone else experienced anything like this? I havent been able to find anything like this online. I have made an appt with our eye doctor to make sure there isnt anything else going on.