colleendonny Posted October 25, 2011 Report Share Posted October 25, 2011 Hello everyone, I'm glad I discovered this forum in my searching for some type of answers. So, tonight it Tuesday night. Last Thursday, 5 nights ago. My almost 5 year old daughter, Kayleigh, became a different little girl. She is a sweet little girl, very compassionate, very observant and helpful. Here is some background: She will be 5 in December. She attented last year and this year, an integrated preschool. She is "typical peer model" for the special needs students who are half of her class class. Some kids have down syndrome, speech problems and echoloria. This summer, maybe late May/ early June, I noticed a bullseye rash on her upper arm. I called her pedi's and the nurse said it didn't sound like a lyme disease and I din't need to bring her in. And I didn't. She wasn't sick after. So fast forwad to Thursday. She was fine. We played at home and she was fine. Went to school and she was fine. At home she was fine. I put her to bed and about an hour after she called me up crying, as she may do sometimes, but this time she was saying, "I'm saying a bad word with my mouth shut." And she kept saying this. I finally got out of her what the "bad words" were and it was poop and pee. I explained to her that those weren't bad words but not words to really talk about. So since then, she has been saying this phrase, "I'm saying words with my mouth shut." Basically, what I'm thinking she's doing, is repeating words that she hears and is saying then in her head after. So, I'm guessing it's not echoloria, because that has to be said aloud, right? I also noticed the lip smacking on Friday morning. I brought these to her preschool teachers attention at dropoff. At pickup her teacher said she did the lip smacking a few times. Here are her other symptoms. These are not happening all day, but periodically. Sometimes more, some less... -Repeating words in her head -Lip smacking -Biting her bottom lip -Moving her jaw to the side -Clapping more -More touchy feely -More defiant, (which she hardly ever was) -Clearing her throat -She also has a small rash on her bellybutton -She wants to scratch things -She keeps doing things and says that she's doing it a little hard (She was using her fist to hit her other hand.) -She saying that's she's trying to not say words in her head, and she can't stop and that she's sorry -She's dissecting every word we say, asking if it's a bad word. Or asking about everything we say. She is just a different child and I'm just sick over this. I brought her to the ER on Sat night, just because i"know" something is wrong. They brushed me off and gave her a urine test. I bet they were thinking I gave her drugs. So I brought her to the pedi yeaterday. Her teacher and the pedi think it's a "behavioral" issue. I know it's not. So we took some blood to check for infection, including LYME and a throat culture for strep. I know some symptoms sound like it could be PANDAS, but I'm just not sure. If it were from a strep infection, who knows when it could have been, and would the culture still be positive? What are your thoughts/ suggestions on Kayleigh? I'm just at a loss for words..... So in the meantime I'm looking for a neuroligist at Children's Hospital Boston. Does anyone know anyone? I'd greatly appreciate and feedback/ suggestions. Thanks so much Link to comment Share on other sites More sharing options...
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 account
Already have an account? Sign in here.Sign In Now