Looking for some help

[colleendonny]

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

[wesimkins]

Hi,

 

I am so sorry for you and your family. This board has been a huge resource for us and I hope for you. I guess I would say not to panic. We try to take one day at a time. Our son begin having tics/behavior problems a year ago. We enjoyed a relatively peaceful 7 months and now things have turned for the worse. I would recommend getting an IGENEX test for the Lyme. I was CDC negative but very positive based on their criteria and the treatment I am receiving is allowing me to live a semi-normal life. My son saw a neurologist at Childrens who said we could medicate if we wanted but there was nothing they could do otherwise. We are treating with supplements know that have helped so much. Comb the boards there is a ton of information Sending HUGS.....Windy

[Chemar]

Hi

it really sounds like your doctor dropped the ball on this!

 

I saw you posted on the PANDAS forum as well, and would suggest you also do on our Lyme Disease forum

 

hope you find a good doctor who can begin effective treatment

[philamom]

Given the time period the rash took place I would strongly recommend investigating Lyme disease. Late May/early June is the time when many tick bites go unnoticed beacause of their size (size of a fleck of black pepper). Like the person mentioned above, I recommend testing through Igenex (Western Blot IgM/IgG) - it is $200. You pay up front and submit the claim to your insurance. We received 80% back, but it really depends on your insurance. If you would like more information, you can post on the lyme forum.

Edited October 26, 2011 by philamom

[colleendonny]

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.

[guy123]

If she's saying the words in her head, it could be similar to having a song stuck in your head. In fact, I read something once that hypothesized that getting a song stuck in your head was a "cognitive tic."

 

The rash is suspicious for Lyme Disease. I would follow the suggestions in this thread because I don't know anything about Lyme disease myself.

[rowingmom]

My 10yo daughter developed motor tics which eventually increased to include vocal tics 2 years ago, 1 month after having a single, round 1 inch diameter rash with a dark red border on her leg. It did not develop into a bulleye. I did not recognize it as a lyme reaction (but after checking the lyme rashes pictured on Dr. Jones' website I realize that it was). Her symptoms were exacerbated at first by strep infections and then viral infections as well. Pain symptoms began in Jan 2011. She was diagnosed with lyme/bartonella by an LLMD in June 2011 after 6 months of my investigating elimination diets (oxalates, salicylates, GFCF) which helped but did not eliminate her symptoms. It has taken 4 months on biaxin/rifampin to relieve her symptoms. Her tics have resolved and her pain symptoms now only show up when she is extremely fatigued. I have no idea how much longer she will need treatment to prevent relapse, but we will probably continue with herbal protocols indefinately after the Abx are discontinued. I wish I had recognized her rash as lyme and treated earlier. So glad that you will be starting treatment sooner rather than later.