tlkinser

Thank you for your reply. Yes, my son has only had tics for about 4 months, although my husband and I can both remember two other specific episodes in the past year of throat clearing that lasted for about a week and then went away. We thought he had allergies but now know otherwise. I also should add that he was a very easy going, laid-back baby and about the time that I introduced table food (10 months), his personality changed completely. He become very tempermental, started shrieking, and would occasionally bang his head on the floor. He had a speech delay and there were several times that I asked my husband if he thought our son might be autistic. We just assumed that he was a boy and therefore, different from our older "easy-to-parent" daughter. I took him to the pediatrician several times for his behavior, read all kinds of books about parenting strong-willed and spirited children, and left many play-groups in tears. I've always felt there was something different about him but thought we were dealing with dyslexia or ADD. I've always said "his wires are criss-crossed". There are so many things that I now see in hindsight... We treated the strep with amoxicillin (I think about 10 days) and then I just took him in to the dr every 2-3 weeks to have his blood checked. The titres continued to drop with each visit. During this course, I took him along with my 6 year old dd to another neurologist as both had been dx with PANDAS by my pedi at that time. (Long story with her, but she is so minor compared to him that I can't even worry about her right now. Eye blinking and some slight humming, but it doesn't bother her nor does it bother us or anyone else at this point.) Anyway, the neuro told me that the PANDAS diagnosis is not really valid after one incidence of strep since so many school aged children have strep at any given time. A coincidence, he said. He told me that if their tics explode again AND the ASO titres go up, then we can talk about PANDAS. Otherwise, he just gave them the labels of TS (ds) and tic disorder (dd). Obviously, I left in tears with more questions than answers. sigh. My son's tics did decrease during May and early June, but by late June they were starting up again. By July, he started having heavy tics and they have not stopped. I have had him tested several times this summer and his levels have all come back normal. His tics are both vocal and motor including: snorting, high-pitched inhaling (sounds as if he's surprised and this one goes on non-stop, almost like hiccups all.day.long.), yelling out "EGHHHH!" or "AGHHHH!" loudly, kissing/lip-smacking sounds. head shaking, licking or biting his shirt, fingers, or objects around him, head banging or banging objects on his head, the list goes on and on. His behavior also changes as he sometimes acts VERY immature (baby talk, potty talk, inapproriate laughing, hyperactivity, etc.) He has not always been like this, nor is he always like this during the day. It comes and goes. I know he knows better. I have found him in his room on the floor holding his head saying that he "hates his allergies" and wants them to go away. We have told him that he has allergies rather than go into the whole TS thing with him and the other two children. It is breaking our hearts. He is such a sweet loving boy, but I find myself losing my patience with him. He is scheduled to start Kindergarten in 2 weeks but I am thinking that I might need to keep him home until we get this under control. So much to talk about as I know we each have our own stories full of details. We could all write a book, I'm sure. Thank you for reading this far and for offering any advice you might have. I am so anxious for our appt with the Environmental Physician in 2 weeks. If this visit doesn't offer any insight, we will keep trying. We are in Georgia and are willing to go anywhere to find help for our little guy. Thank you! tlk

Hi all, I have been reading posts here since last April after my son exploded with tics. After many dr visits (pediatrician, ER, 2 neurologists, cardiologist), it was found that his ASO level was over 600 and he was dx with PANDAS. His levels have since gone down to normal, yet his tics are worse then ever. At this point, he is rarely tic free for even a minute unless he is sleeping or we are in the company of others and he is holding it in as best he can. He was dx with Synd. Chorea by one of the neurologists, PANDAS by the pediatrician, tic disorder by the ER, and TS by the other neuro. I have been told to wait and see and come back when/if I decide to medicate him. In our opinion, this is not an option as he's only 5 (just turned 5 this summer) and I can't take a risk with any of the side effects. We have just been so overwhelmed and confused by everything these past 4 months. I feel like I'm either sick to my stomach or crying all day long as I watch him tic. It is heartbreaking as you all know. I just can't believe that in such a short time, my son has become a different person. We can hardly go anywhere in public right now. I am just so sad for him and for our family. We are currently doing the Feingold Diet and just when I think I see some improvement, he starts ticcing like crazy again. Today, I decided to cut out milk and dairy for the next 4 days to see if that helps. I have read/am reading some of the books listed here: Doris Rapp, "Is This Your Child", Jacquelyn McCandless, "Children With Starving Brains"; Jane Hersey, "Why Can't My Child Behave?" and also Sheila Rogers' book that I ordered from this site. They are all wonderful resources and I've learned so much. I am just trying to implement all of the info into helping my son. We took him to an allergist last week and the scratch test only showed an allergy to dust mites, mold and egg (sensitivity). We have covered all of the beds and pillows with cotton allergen-free covers, are in the process of getting the home tested for mold, and I've removed egg from his diet. We have an appt with an environmental physician in 2 weeks and I am wondering if I'll make that long at the rate we're going. Until then, I am reading everything I can (feels like I'm on the computer all day long) and taking notes so that I am prepared for our appt. Thank you for reading this far and THANK YOU for all of the info you've offered in past posts! tlk