Lyme?

[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

[MichaelTampa]

Given she has a lyme rash and lyme symptoms, it is very likely lyme. Not sure how much you know about the politics of lyme, but understand that you are going to continue to get brushed off by everybody regarding possible lyme until you actually go to a doctor who specializes in lyme disease. Maybe someone here can recommend one in your area, or you might get a list of ones in your area from ilads.org.

 

A neurologist is not going to be of any help unless you want to give up looking for the actual cause and just dispense serious drugs with serious consequences on the off chance that it might help symptoms a little bit here and there. If more serious symptoms were involved, a neurologist for symptoms management might make more sense, but doesn't sound like it does at this point.

[momofgirls]

I second everything Michael Tampa said in his post. I wouldn't waste a lot of time with a neurologist who does not specialize in Lyme. You can contact ILADS.org for doctor referrals. Your daughter is young and this is very treatable but can be difficult. I would see a doctor that understands Lyme and all it's co-infections.ask lots of question on this forum. The parents here have done a lot of research.

Kim

Edited October 26, 2011 by momofgirls

[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.

[LNN]

The best thing to do is see if you can convince the pedi to prescribe antibiotics while you wait for the lyme results. Most LLMDs (lyme literate MDs) will use more than one antibiotic at a time - one targeting bacteria within the cell (intracellular) and one that works on an outer (extracellular). The OCD symptoms would suggest either neuro-lyme or bartonella - another infection carried by a tick. Either way, many start off on bactrim plus azithromycin or amoxicillin. But there are many possible combos. Even if you can only get your doctor to prescribe one abx, it's better than nothing.

 

I PMd you some CT docs.

 

As Michael mentioned, lyme is a hot potato. You may may need to do additional testing beyond the standard western blot you've already done. Under the helpful threads section at the top of this forum, you can find some articles on the tests and how to find a doctor.

 

The biggest thing you'll likely find is that the doctors you always thought would help you may blow you off. It's a strange feeling but it's something that's quite common when a child presents with neuro-psych symptoms. The docs are generally less concerned with "why" and just want to medicate symptoms. You'll need to see a lyme specialist if you want someone to give you treatment options beyond prozac. Sorry to sound so jaded. But nearly everyone on this forum started out on the Pandas forum - we're all very familiar with the "overnight" changes in our kids and have spent a lot of energy searching for doctors who will help. We've all walked in your shoes. So for us, it brings back some "PTSD" and it's hard to not sound angry that yet another family is being put through this. We'll all help as best we can.

[Suzan]

Oh I am so sorry you are going through this and that your daughter is having these symptoms! You are in the right place to get help and advice and I am glad you are questioning what your doctors are saying. I lived for 8 years with the strange symptoms with my daughters until I found the pandas and then lyme boards. After what I know now and what you have told me, I agree that you should pursue lyme and see a LLMD. My 10 yr old now has unwanted thoughts of people around her dying. She can't control it and it can keep her up at night. It gets better with detox so I know it's from the lyme.

 

HUGS!

 

Susan

[colleendonny]

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.

[rowingmom]

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.

 

My 9yo daughter also had an allergic reaction to bactrum 2 weeks after we started it in June. The LLMD substituted biaxin (and rifampin for bartonella), and we have now seen a great improvement in her symptoms (both pain and PANDAS).

[colleendonny]

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.

[aidansmom]

With a bullseye rash prior to the onset of the symptoms I would not spend too much time with testing. There are a lot of reasons a Lyme test can come back negative while the patient still has lyme. Try to get in with a LLMD.

[rowingmom]

Please find a LLMD in your area and have a western blot done, along with the proper tests for co-infections. Antibody tests often come back negative because of lyme/co-infection immunosuppression(my daughter's did). The LLMD will know which tests need to be done, and will save you the time and money of doing unnecessary tests, and trying to figure out for yourself which tests you need. The children's hospital ER will not understand the test results. If your daughter has had a bull's eye rash, that alone will be sufficient for a LLMD to treat with Abx.

[mama2alex]

Hi, I'm so sorry you are going through this! I just have a minute, so wanted to share this from the website of the International Lyme and Associated Diseases Society (ILADS): "It is important to know that the EM rash is pathognomonic of Lyme disease and requires no further verification prior to starting an appropriate course of antibiotic therapy."

 

I'd recommend looking at their web site to learn more - www.ilads.org.

[philamom]

Hi, I'm so sorry you are going through this! I just have a minute, so wanted to share this from the website of the International Lyme and Associated Diseases Society (ILADS): "It is important to know that the EM rash is pathognomonic of Lyme disease and requires no further verification prior to starting an appropriate course of antibiotic therapy."

 

I'd recommend looking at their web site to learn more - www.ilads.org.

I agree!

 

Some other websites:

www.lymedisease.org (formely CALDA)

www.lymepa.org (click on "Lyme Disease - The Basics)

www.lymediseaseassociation.org