colleendonny

Okay some of you may have read my last post, but if not I'll rewrite the symptoms plus a few more new behaviors. It's only been a week and I just feel at my wits end. I did notice a bullseye rash in my daughter in late May. Called pedi's. Nurse said it didn't sound like one and she didn't need to be seen. I trusted her. I wish I could go back to that day though! So last Thursday her symptoms started: Started with her saying that she was talking with her mouth closed. i.e; repeating words in her head. Now the are more like thoughts maybe that keep being repeated or swear. Tonight it was b*tch and jerk, kill, and I hate Daddy. I'm am just sick over these words. From a 4 year old?! She also said she dreamt that I burned her 2 year old brother on the head with a hot pan. Today she said she was going to stick her 4 month old sister with a fork. Then said just kidding when I called her out on it. Other symptoms are aggressiveness, touchy feely, jaw movements, biting her top lip, rapidly running her tongue across her teeth. I think I noticed more frequent blinking too. But no sickness, fevers, soreness that she has told me about. She keeps coming up to me saying that she can't stop repeating these bad words. Her Blood lyme from the pediatrician just came back negative. I did contact IgeneX and they are sending out a sample kit. Has anyone ever done this? How does it work? What if it comes back negative....can you totally rule out LYME and /or co-infections? What are other ways to test for co-infections? Could this just be an OCD?! Could this be PANDAS/PITAND without a positive strep throat culture? ANd lastly, who are the LYME doctors that you see in my area, Massachusetts? How long did it take you to get an appointment? Thanks so much. I am so glad I found these forums. You guys are so knowledgable.

Talked to the pedi. Test was negative for LYME and infection. I contacted IMEGEN and they are sending me out a kit. How does this kit work? How long does it take for their answer? My pedi is suggesting that we should just take her to the Emergency Room at Childrens Hospital Boston and see what they say after I mention her symptoms. I am just so frusterated. I just feel like waiting for things will only make her worse. She has good times and bad times. Today she kept saying that she was saying bad words in her head. Like B*tch, and idiot, and Answer the fricken phone. Oh MY. I just don't know what to do. On top of this I have a 2 year old a a 4 month old. The mouth ticks and the scratching wern't really here today. Could this just be psychological or OCD? Should I just wait until IMEGEN test to get her and the results before I go to the ER? I'm so confused.

Thanks everyone, All this help means the world to me. LM- Thanks for the great information! She's allergic to bactrum meds. I hope there's some way around. Susan, Weird you say that. The other night she says, "Mom, if you die, that would be sad, right?" UGH, the waiting game sucks. I'm sure you have all been there. And I'm very sorry that you have.

Wow, Thanks for all of the responses everyone! I talked to the pedi's office today. The strep test came back negative and they said in her blood there is no evidence of a recent strep infection. Is there another way that I can check this? I also posted in LYME. I did notice a bullseye rash on here in late May and called the pedi's and described the rash and the nurse said it wasn't and I believed her, so never brought her in. I'm kicking myself now for it. The LYME test should be in by the beginning of next week. She was really good on and off today. We kept her distracted and disclipined. We went to a special story hour tonight for kids and she sat but her eyes were watching the other kids a lot and she was fiddling her hands, and doing some jaw movements. She came down to say goodnight to me and she said, "Mom, I keep saying bad words in my head and I can't stop". I thought we were doing well today and started to think it may be behavioral..... So I said, "You can stop". She started crying and went back up to my husband to finish her goodnight book. She kept saying, "Daddy, I always try to stop saying bad things in my head, but I just can't. I'm sorry. I don't want to say these things." I KNOW something is wrong!!!! And it's not behavioral. Oh, and we just discover our insurance doesn't cover a neuro psych test. It will cost $3,000 out of pocket. And she has her really good times, especially when distracted. Whose to say in the 1-2 hour eval, she will display any symptoms at all? So, now I'm thinking the LYME route. I feel like it may fit. Any other words of wisdom for me? I appreciate all of the help. We truly do. I'm getting more and more ideas to ask my pedi about. Thanks so much.

Wow, Thanks for all of the responses everyone! I talked to the pedi's office today. The strep test came back negative and they said in her blood there is no evidence of a recent strep infection. Is there another way that I can check this? I also posted in LYME. I did notice a bullseye rash on here in late May and called the pedi's and described the rash and the nurse said it wasn't and I believed her, so never brought her in. I'm kicking myself now for it. The LYME test should be in by the beginning of next week. She was really good on and off today. We kept her distracted and disclipined. We went to a special story hour tonight for kids and she sat but her eyes were watching the other kids a lot and she was fiddling her hands, and doing some jaw movements. She came down to say goodnight to me and she said, "Mom, I keep saying bad words in my head and I can't stop". I thought we were doing well today and started to think it may be behavioral..... So I said, "You can stop". She started crying and went back up to my husband to finish her goodnight book. She kept saying, "Daddy, I always try to stop saying bad things in my head, but I just can't. I'm sorry. I don't want to say these things." I KNOW something is wrong!!!! And it's not behavioral. Oh, and we just discover our insurance doesn't cover a neuro psych test. It will cost $3,000 out of pocket. And she has her really good times, especially when distracted. Whose to say in the 1-2 hour eval, she will display any symptoms at all? So, now I'm thinking the LYME route. I feel like it may fit. Any other words of wisdom for me? I appreciate all of the help. We truly do. I'm getting more and more ideas to ask my pedi about. Thanks so much.

Wow, Thanks for all of the responses everyone! I talked to the pedi's office today. The strep test came back negative and they said in her blood there is no evidence of a recent strep infection. Is there another way that I can check this? I also posted in LYME. I did notice a bullseye rash on here in late May and called the pedi's and described the rash and the nurse said it wasn't and I believed her, so never brought her in. I'm kicking myself now for it. The LYME test should be in by the beginning of next week. She was really good on and off today. We kept her distracted and disclipined. We went to a special story hour tonight for kids and she sat but her eyes were watching the other kids a lot and she was fiddling her hands, and doing some jaw movements. She came down to say goodnight to me and she said, "Mom, I keep saying bad words in my head and I can't stop". I thought we were doing well today and started to think it may be behavioral..... So I said, "You can stop". She started crying and went back up to my husband to finish her goodnight book. She kept saying, "Daddy, I always try to stop saying bad things in my head, but I just can't. I'm sorry. I don't want to say these things." I KNOW something is wrong!!!! And it's not behavioral. Oh, and we just discover our insurance doesn't cover a neuro psych test. It will cost $3,000 out of pocket. And she has her really good times, especially when distracted. Whose to say in the 1-2 hour eval, she will display any symptoms at all? So, now I'm thinking the LYME route. I feel like it may fit. Any other words of wisdom for me? I appreciate all of the help. We truly do. I'm getting more and more ideas to ask my pedi about. Thanks so much.

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

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

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