DebbieB

Well, forgive me for taking so long to get back here. I have been very sick with the flu and still trying to take care of my son Justin who has had double ear infections which aren't clearing up with antibiotics. Anyways, the nuerologist we saw was supposed to be the best in the Children's center. He said that he thought it was either general tics or stereotypic movement disorder. He said that he would expect it to resolve within about 2-3 years. We spoke of my other son's blinking and he thought that was also hopefully short termed. Justin's tics have subsided, but they also return in spurts. He came home today from school full of what is now shoulder twitching and neck/jaw twitching. One thing I do not understand is how these keep changing location. I can definately say that I am happy that his head is not going back like it was, but it is strange how it keeps changing. At first I thought that my son definately fit the stereotypic movement theory. Stereotypic movement disorder is a condition in which a person engages in repetitive, often rhythmic, but purposeless movements. In some cases, the movements may result in self-injury. For this behavior to be considered a disorder, the repetitive movements must continue for at least 4 weeks, and they must interfere with the person's normal daily functioning. This disorder most often affects children with mental and developmental retardation. The repetitive movements that are common with this disorder include: Rocking Banging the head Self-biting Nail biting Self-hitting Picking at the skin Handshaking or waving Mouthing of objects grinding teeth He grinds his teeth, bites his nails terribly, hits himself sometimes and now makes repetitive movements. But as I watch him, I think that these movements he makes are more like tics. I don't think that I have ever noticed him make repeated noises, but I don't know for sure. Do I have to wait more than a year for this to go on to see if someone thinks that it is more perminent or how would I tell the difference. The EEG came out fine. Do tics usually show up in an EEG as abnormal? Does someone with TD show anything different on an EEG? I have a lot of research to still do. Unfortunately, I don't know what kind of outlook on this that I should have. Any thoughts? Thanks again for listening to me ramble. Debbie (Still confused)

Thank you everyone for you help and support. We are going to the neurologist this morning and I am hoping he has some answers. My son's tics have subsided about 80% or so. In addition, I will be doing what I can about the questions of yeast, metals, and food sensitivty. Debbie

Hi Sunshine, That is a very interesting point. I don't knowanything about yeast growths and what they cause or may cause. My son's tics are better than they were, but I don't what the reason for that is. i don't know if it is because he has PITANDS and the tics are slowing down or if it is because we have kept all tvs off since Sunday morning, or some other reason. We have a nuerology appointment at the children's hospital on Monday and he had an EEG done on Tuesday. Hopefully these can shed some light on the issue. Thanks again for everyone's help.

Hi Kim, I dont think he exibited any nuerological issues at birth, but I have always been concerned with the medications I was on during my pregnancy. I had extreme vomitting from heartburn so they gave me reglan. At about 27/28 weeks, I was in preterm labor two times in one week. The first two meds were the routine meds and they didn't work so they used Nifedipine to stop my labor and continued with it for 2 1/2 months until I had my son at 37 weeks. Most of his milestones seemed on time except things to do with talking. I would say that he may have regressed at about 1 1/2 yrs old. He had tubes at 13 months due to constant ear infections which wouldn't go away with medication. I think the ear infections were the only antibiotic use really. No meds now, ear infection few wks ago amoxicillan given ok after that. He's never gotten meds for hyperactivity, etc. I am going to look more into the pandas, and especially the pitands. His fever has been on and off (which was only 100.8 at the highest) and it has become a cold with a cough. He has been checked three days in a row for this cold. He is extremely tired which is never the case with him. He is telling us that his eyes, his stomach, his neck all hurt. (at different times) He talks about going to sleep a lot. I am wondering about mono or maybe something else. I am going to talk to the doc tomorrow. Just for the record, my son has verbal apraxia which was diagnosed by his therapist almost immediately. Thank you Kim and everyone else who has responded. Debbie Thank you Patty, Chemar and Andy, I have read all of your recommendations and post and these will be looked into if they haven't already. I have always wanted to know where and how to go about having him tested for allergies and sensitivities. Do you go to a regualr doctor or is it the type of doctor that is into alternative medicine? Is this ever covered by insurance? And does it require giving him a needle for each item? That is out of the question for now. He panics over needles and doesn[t Thank you Patty, Chemar and Andy, I have read all of your recommendations and post and these will be looked into if they haven't already. I have always wanted to know where and how to go about having him tested for allergies and sensitivities. Do you go to a regualr doctor or is it the type of doctor that is into alternative medicine? Is this ever covered by insurance? And does it require giving him a needle for each item? That is out of the question for now. He panics over needles and doesn' sit still for anything like that. Debbie Oh and by the way, I noticed something different tonight. I know that many tics stop when they are really focussed on something, but would that include crying? My son's tics completely went away when he was crying. Weird.

Thank you for your input Chemar. The hospital did a rapid and blood test for stept as well as other blood tests, but I will ask for a Panda's test to be done. Thank you for that information. Unfortunately, I do not think this was the first of his ticks, just the first of the tics we noticed. I think the worst of it is that within 24 hours of the hospital, we are seeing a dramatic increase in types of tics, as well as the severity of some of them. This morning I woke up to him whipping his neck back with such force that I am worried he will give himself whiplash or something else. Sometimes these tics throw him off balance and I am now afraid of him going up and down stairs. Anyone of us would have the potential to fall down the stairs if we were constantly whipping our head up and down. I have noticed that he does do more of this when he watches TV. I have turned off all of our TV's off today and I am trying to make a game plan. I read that LCD's are better for tics, but I still need to get more info on this as well as so much more. I haven't read too much about this happening to many three year olds and especially at this degree that it is very upsetting. I thank you for your help and support. Debbie

My name is Debbie. I have two sons, one is 10 and the other is almost 3 and a half. My three year old Justin has a nuerological speech disorder called apraxia, as well as other issues such as hyperactivity and some sensitivity issues like constant biting of the nails, overstimulation in certain atmospheres and impulsivity issues, etc. He has just started a preschool program and special ed program which he has been doing wonderful in. Justin came down with a mild fever this Wednesday and he came home from school shaking his head periodically like he would to say "no" and we first thought this was weird, but thought he was just doing some weird imitation of a cartoon like he has done before. The next day he stayed home with my mother and she noticed more of this. His fever came back later that evening and he fell asleep. He woke up after about an hour and he started to jerk his head upward. Over the next hour, he progressed and did this more frequently and more severly. It started to look like a seizure so I took him that evening to the CT Children's Hospital where they thought he was having mild seizures. They did a CT SCAN on him and it came out normal. The nuerologist was called and they presumed it was a movement disorder in which we are set up for an MRI and EEG sometime in the next week or so. The ticks have now worsened in just a short time to facial, neck, head, shoulders, and what I believe to be stomach ticks. He is laying on the cold kitchen floor with his shirt up. I think what I felt were similar to muscle spasms. I have done so much research and advocating for him when it comes to all of the other disabilities he has. I have worked with him intensely for the last year and a half, but I am extremely scared when it comes to this. This poor kid has so much to deal with and has come so far this year and to have something like this thrown at him where there seems to be so little that can be done seems too cruel. I feel so helpless except to learn as much as I can to help. But from everything that I have read so far in the last 24 hours, it seems like there isn't much that can be done for something like this. Is this right or am I just not knowledgeable enough yet? Any help in understanding this or ways I can help would be greatly appreciated. I don't know what else to do right now except cry. I have honestly never felt so helpless before as a mother.