Williams Dad

We are near Bowling Green Ohio. We have seen a neurologist in the past for his tics. He did every test to get him nervous or frustrated. Didn't work. I appreciated the info and I might have to get in contact with you. We are all going to the Dr. today to get on some antibiotics. Even if they say we don't need them. I will keep you all posted you all have been great. Thanks Greg

Wow!!!!! What a a lot of great info here, thanks very much. How long do these episodes last? He seem fine right now, just a little timid about some movies he used to watch or eating or drinking something. Because he thinks it might give him those thoughts again, I guess. He just told he doesn't know why he did that last night. I told him it was OK. That I sometimes feel overwhelmed with things, but all I have to do is to think of my wife and kids and how much I love them and it all goes away. I guess I just find it really hard to believe that all of this can come from a strep infection. I am so frustrated right now. We are going to let things go just for today and see how he feels. He is in a Wiffle ball league and wants to go. Making a doctors appointment on Monday for the strep test. And asking them for some antibiotics even if it comes back negative. (Zithro or Augmentin) All of use are going. William is absolutely terrified of the strep test , hates it will scream and cry like he is getting a shot or something. ( help with calming him so he doesn't start ticking worse) Any Pandas Dr in Ohio? Thanks again and God bless Greg

Thank you all very much with the kind words of encouragement. A Little quick history. 4 of us in our family have suffered from constant strep infection. We all have had or tonsils take out about a year and a half ago. We have looked into PANDAS before but thought it was not our William. Plus we couldn't find a Doctor in our area that even believe about it. (OHIO) So a quick ? though. What about Anxiety attacks, can this be confuse with OCD. I was up all night doing research and found that Anxiety could be what happened last night. This morning after William woke he came in my room and said sorry and that he felt better. Broke my heart. We have no notice of thirst or frequent urinating. Just the break down last night was the worst ever. He has some minor tics. Mostly pulling at his eye lids eye blinking and throat clearing being the most common. Thanks again to all and sorry for the rambling. Just still very confused with what happened last night. Greg Keiffer.

Hello my name is Greg. My son William (which is 6 now) has had tics now for over a year. We have had him to a neurologist and he say everything was fine.(minor motor tics) But tonight we went to a hockey game, grab something to eat. Then all of a sudden a complete break down. Things I have never herd my son say.(sorry I am in tears don't even know what to type) EX: He was completely scared very bad thoughts in his head. He thought he was going to turn into an alien, thought his mother was killed, says he used to be happy not anymore . But he just going back to, he doesn't know why he is feeling this way. He loves to play with Lego's and his DS but he told he doesn't want to touch or see them anymore. He loves school, he told us he is not gong on Monday he is to scared. Plus a ton of other things I can't remember, because I am just completely blown away. I have no idea what to say or what to think right now. This has just come right out of the blue. Please just give some ideas or thoughts of what the ###### is going on with my William. Thanks Greg

OK took William to the neurologist Yesterday. This Friday he will be having his ASO titers tested alone with his copper level and some other test with the blood. He was concerned about the Strep in our family. The neurologist told us that he has herd of PANDAS, but was not completely familiar with it. He did know about the quick onset of symptoms in Pandas . He did not fell that William had these symptoms, but a normal boy with mild anxiety as a lot of children do. He felt it was not anything to be concerned about at this point. He said that his ticks were mild also, and to just monitor them for the time being. So where to go from here is the big ?. Will he get strep and his ticks and minor anxiety get worse? I don't know. I guess we will just have to play the waiting game and hope for the best. I will be keeping a close eye on him and logging his tics and other symptoms. And letting William be William for the time being. I do feel more and more that William might just be a boy with a mild tic disorder. And I might have been reading into to much. (we are still having him tested for food allergies) I want all of you to know, That you will be in my prayers . I thank you all for the advice you have given me and William. Thank you, William's Dad and Family

First I would like to say thanks again. I will try an answer a lot of these ? to the best of my knowledge. KIM'S ? first. As far as the flu shots go, I do not know what type it was ,but will be finding out. As far as the picky eating part, that should be easy. He is not a junk food eater at all. He doesn't like candy, cakes, He does like his cookies (oreo) occasionally. He loves pbj, fruits and veggies, french fries, some chicken and cereals (crispx and cheerios) Loves Milk (chocolate). Ok some junk food. I guess i mean candy and such. Thats about it. So I think it would be relatively easy to find a food allergy( I hope). Yes he is a gagger, he will breakdown and cry a lot when we go to get the strep test done. (hates it a lot) My son is very mild manner most of the time. (laid back you could say). I am going to be keeping a log of his habits. Starting Monday, Everything he does, When we play together , when he plays with his friends, with complete strangers (kids I mean). Everything i can think of I will be logging it. Just to see if I can find triggers for his tics. Caryn. No I have not called a DAN Dr. yet. We have an appointment with neurologist Monday. After that I will be looking into a lot more things. My wife's friend has a son that has Autism. We will probably be talking to her about soon. Not sure where the Dr. is from. As far as history in the family. My wife's mother has Alzheimer's bad, beyond bad I should say. I know that I was a little ADD not ADHD. I was to very mild mannered, shy almost. My MOM very OCD, cleans none stop. Mood swings like crazy (I like to think almost Bipolar) never diagnosed. My sister the same OCD cleans none stop washes hands constantly. My wife's sister is 48 years old and is severely handicapped (wheel chair most of her life). That is about all I can think of right know. Michele, No need to say sorry. I live by Bowling Green Ohio, about 20 mins south of BG. Thank you for all the info you have given us. I will be looking into a lot of the Dr.s you posted. Very very appreciative for that. Know about the speech and such you mentioned. He does not lack any of those skills. He speech is out standing, eyes are perfect (just had them checked) and motor skills normal for a 5 year old. Teacher tells us he is in the top of his class. He can spell things most of the others cannot, (sounds words out) he actually can do some math, know the handwriting not so good, but can write all his letters. He is very athletic , currently in gymnastics, Plays baseball, throws and hits very well. bmom. The Dr. cannot go near his mouth , with out a complete breakdown. The separation anxiety has increased,(not wanting his mother to leave him, not wanting me to go to work, cannot be in a room by himself for even a short period of time) Thinks he sees things out side at night,< (most recent) he will lock the door, even if we are with him. I don't think these things are extremely bad. Its not a total breakdown with most of these. Its just somethings I have noticed. To everyone, I hope I have answered most of your ?. To the best of my knowledge. I once again thank all of you. Sincerley, Williams Dad

There are some signs off OCD. His mother teaches wear he goes to preschool. He used to love going, he was actually the one helping other kids that would cry when they were dropped off for school. Now he is the one crying when his mother leaves. He had to stay right beside his teacher all day.(not leave her side) He is always asking me if I have to go to work . It is not severe though, he does end up calming down. Video games also makes he tic like crazy. NO urinary problems at all. As far a food sensitivity, he has always been a picky eater, like myself. He does have some mood swings but not bad , (typical child too me). The most of the time he is very mild mannered. Something that might have triggered this, is the surgery he had with his tonsils. I have noticed a big difference in him since the surgery. But you are right, all of your cases seem much worse than Williams, but there are signs. I was just thinking it could be in the early stages. Just because of all the strep infections we have had since last February. At Least 2 times a mouth we all are diagnosed. I don't think we are getting rid of it at all. Plus we have been taking antibiotics every month , either Agmenten or Zithromax. With just a week or 2 in between. With all the strep and the recent ticing all the time. That is what brought me here. Am I reading into this situation to much? Very possible. Should I be posting in just the Tourette's forum, that could be possible to. I just don't know what to do or where to go to help him. I really appreciate all your suggestions. I love how all of you are sticking together , you all are amazingly strong people. I will be looking for a DAN Dr. I know one of my wife's friends sons was just recently diagnosed with Autism. Maybe he can help. But first the trip to the neurologist is first. Thank you all very much for the replies. Like is said you all will forever be in my debt. AND Prayers Williams Dad

Thank you for responding to my first post. Well we went to the eye exam and as expected he has perfect vision. The Dr. there told me a story of his oldest child. He told me when his son turned five he notice a lot of movement with his eyes(eye dr.) blinking eye rolling and even head twitching. He said this went on and off for about a year and then it all just went away. He did say not that this would be my case but that there is hope. I then told him about the story with strep and the relation with PANDAS. He was very intrigued. He said he was going to do some research on the subject and possibly ask some other Doctors. So we just have to wait until his dr. visit Monday and go from there. Again thanks for the reply very very much I was hoping to have a lot more responses but yours really means a lot. Sincerley, Williams Dad

First I would like to apologize for my typing abilities and my spelling.( Very Bad). My name is Greg and my wife's name is Karla. The story begins back in February. My wife,myself and both kids all started to get strep. This had been going on since then. Both of my kids and my wife had there tonsils and adenoids taken out in July to help with the strep situation. I am scheduled this December 17th to get mine out. Then about 2 months ago we notice William doing the throat clearing thing. We kept telling him to stop for we feared it might became a habit. Now he is doing the eye blinking and not the throat clearing anymore. We took both kids to the doctor Monday the 13th to talk to her about the blinking and throat clearing.( And to get flu shots). The Doc said to get a eyes exam done and then mention the possibility of Tourette's. Instantly we freaked out. I then looked around the Internet and sure enough he had all the signs of TS or I should say tic disorders. Thinking about this we look back and my wife and I remember other tics he has done in the past few months. Which we thought is was William just being a kid. While playing T-ball he used to pick or pull at his face (eye lids and eye brows). Never thought of it at all. Now we see a lot of things, like: pulling the front of his shirt, blinking, constantly touching his face, taking his clothes off as soon as he gets home from preschool, touching his ears . Almost like he is itchy. Repeating phrases and so on. While searching the Internet I found things about PANDAS and strep possibly linked together, with TS. I have no idea were to start. We have a eye exam today and then Monday we go to the neurologist. Then the following Monday we are going to a holistic healer. What I do know is, we all are taking meds right now for strep. (Zithromax) I have read this could be bad or good. That is were the confusion parts sets in. All I have been doing since the 13th is reading and trying to gather as much info as possible.(Complete over load) I am so exhausted, confused and of course scared.(non-stop crying) The confusion part is that I have read a lot of kids go through this and it could very well just go away with time. All the talk about transit and complex tics confusing as well. Sorry for all the babbling, I just don't know what to do. I found this forum and all I can say is WOW. Everyone here is completely AWSOME. I have been reading this forum for 2 days now and decided it was time to sign up and ask some questions. If any of you have any suggestions, you will forever be in my debt. I am completely willing and able to put as much work into this as all of you have. William is my superstar, I will do anything for either of my children. Some questions 1. If diagnosed with PANDAS will he always have it? 2. What if I can't find a Dr. that deals with PANDAS in my area? (north west OHIO) 3. What if Doctors in my area don't believe in PANDAS?( William's Dr. has never herd of it) 4. Where do I start? 5. Is PANDAS tourett's Looking forward to any suggestions and hearing from all of you. I also would like to thank you all in advance for your willingness to help. Please fell free to e-mail me with any suggestions. Or possible give me a call. Sincerely, Greg,Karla,Kate, and of course MY WILLIAM