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

[JAG10]

Pardon the sidebar rant, but I CAN'T WAIT FOR THE DAY IT DAWNS ON AMERICAN PEDIATRICIANS THEY HAVE HAD A PRIMARY ROLE IN THE EPIDEMIC OF NEURO-PSYCH DISORDERS IN THIS COUNTRY!!!!!

 

My goodness, they do treat antibiotics like crack!!! Your child had THE bullseye rash and they didn't think it would be better safe than sorry to treat them with antibiotics????

 

Sorry. Someone else new just posted Children's Boston was not helpful. Look up top in the pinned thread for helpful docs near you. Nobody wants a BAD doctor. You want a pandas/pans friendly doctor. Dr. Bouboulis is in Darien CT. He might not be a bad choice for you with the bullseye rash history.

 

In the meantime, get a rapid and 72 hour culture. Are the tonsils still in?

[eljomom]

A-men JAG10!!!!! It's like abx are a "controlled substance." I brought my son (not pandas) to Minute Clinic Friday afternoon for a strep test. Was fairly sure he didn't have it....but throat had been feeling weird, and there were some red little dots. She did rapid, without the swab to send in (I didn't realize this at the time). When the timer was still a minute left, she looked at the test and said "there are 2 schools of thought here...one is that there has to be a second pink line...the other is that if there is ANY pinkish color below the control line, it's positive." Well, I stared at that test, and for the life of me, it didn't look any pinker than the rest of the strip, but you know what, I happily took her abx (something I NEVER would have done in the past). Then I had her swab another of my kids who I had with me, and it was the same thing.....but she also said her left ear looked red. She said "I can give you abx for the ear or the strep, if you want." Thank you! Not that either really needed them, but I"m not gambling anymore. Might be worth a road-trip to our local CVS if you really can't get abx anywhere else....

Sorry to jump in on your rant JAG 10.....

colleendonney.....I agree with JAG 10....

[HT's Mom]

What really strikes me is that this all happened LAST THURSDAY! My god, the fact that you found this forum and know about PANDAS in that amount of time is a miraculous tribute to the internet. Just a few years ago there was so little information, it took many of us years to realize what was happening to our kids. So, congratulations, and I have high hopes for your child because the sooner the underlying problem is found and treated the better. I certainly hope it isn't lyme or PANDAs but your story sounds right - find a PANDAS doctor fast and get the right treatments early. Good luck and let us know what happens!

[peglem]

You are so right to not believe this is a behavioral issue. Really? A 5yo with unwanted, obsessive thoughts that are interfering w/ normal functioning? And you can pinpoint almost to the minute when it started...

 

I'm way across the country from you, so can't recommend a doctor for you. But I do want to congratulate you for being so on top of this!

[WorriedDADNMOM]

Jag10----Amen is right!!!!!!!!!!!

 

MY SIDEBAR RANT----------Teachers, Peds, School Nurses, nobody has fricken even heard of this OR "we have heard of it but we just don't know what to do". It is almost like pulling teeth. Please Oh please stab my daughter in the arm to get blood for a test cause I am just crazy to think something is wrong with my kid. Please, I just want to give all my $$$$$$ to doctors who so desperately need more. Needless to say I am pissed off!!!!!!!!!!!!!!!!!!!

 

COLLEEN, BY ALL MEANS DO THE RAPID AND LONG STREP TEST. ABSOLUTELY THINK ABOUT GETTING ASO TITER TESTING FOR PREVIOUS STREP TEST. PREVIOUS STREP HAD STARTED MY DAUGHTERS NOSE,EYE,FOREHEAD AND EYE ROLL TICK. PENICILLIN DID THE TRICK FOR US---FOR ONE TIME. NOW WE ARE BACK AT IT AGAIN. I WOULD ALSO GET YOUR CHILD TESTED FOR MYCOPLASMA, S.PNEUMONIAE, EBV AND ANYTHING ELSE YOU, YOUR PED OR OTHERS ON THIS BOARD THINK MIGHT BE HELPFUL.

 

YOU KNOW YOUR KID------NO ONE, REPEAT NO ONE WILL ADVOCATE FOR YOUR CHILD BETTER THAN YOU!!!!!!!!!!!!!!!

 

Sorry guys-----had a very scary episode last night----read my previous post. Truly scary.

[PhillyPA]

If this were my child and I applied "if I knew then what I knew now" I would take her to the emergency room and demand a spinal tap. Your child could have Lyme disease, Pandas, or a type of auto-immune encephalitis. The red flags that I am reading for your daughter are the mouth movements which can be a symptom of NMDA encephalitis. A spinal tap can test for Lyme and auto-immune types of encephalitis. You have to ask for this test and they SHOULD know what they are doing in Boston. You have to use the right buzz words to get the doctor's attention. Like "complete personality change", "rash" and "psychosis". Early treatment for any of the possible disorders I mentioned about yields a higher chance of a solid cure.

[airial95]

Did the pediatrician look at the belly button rash? That could also be strep. My son's PANDAS was triggered by impetigo, not strep throat - so that's a thought too.

[JAG10]

Great point about the buzz words, Philly!

Sad, but true. Great advice!

[LNN]

I don't want to start a debate. But I personally would not get an ER involved. In some cases, you end up losing control of a situation. A spinal tap is not a particularly good way to detect lyme. The mouth movements could be OCD phrases. I think getting to a helpful doctor is critical. But you're not going to find that doctor in an ER. Yes, it could be something serious. But with the clinical story, it sounds more like lyme or PANS.

 

Just my humble opinion. But don't want to freak a new mom out. Using buzz words is a good idea. But I would be as methodical and calm as I could. I think the better path is as others suggested and getting strep tests and finding some way to justify antibiotics and then get on waiting lists for the good Pandas/lyme docs to get in asap.

 

I would also get What To Do When Your Brain Gets Stuck and Up and Down The Worry Hill, so you can help your child understand what OCD is like. It may be very scary for your daughter and you want to reassure her that you will help her fight the worries and keep her safe. ERP therapy may not be particularly successful early on, but laying the foundation can be reassuring. Intrusive thougths OCD is particularly frieghtining to a child and sometimes OCD tells them something bad will happen if they talk about it. That's a huge burden for a small child to carry around. You need to let her know you know "her secrets" so you can help her not feel isolated. There are many great ERP experts on this forum and I'd encourage you to post with some of your daughter's issues so they can maybe brainstorm some coping tools while you search for medical support.

[JAG10]

It's all good information to be exposed to. Some people's children have gone downhill very severely, very quickly. Of course it's all relative, severity, but a truly severe case is rare. That being said, when it's your kid, it doesn't matter. You need to be taken seriously and quickly.

 

Video taping is helpful when speaking to docs of known and unknown support. It is powerful material to have if you need it. It also helps interpret the subjective nature of behavioral symptoms. Doctors, nurses, therapists all have to judge you as an observer of your child's symptoms. Do you dramatize? Do you minimize? Video helps cut through that uncertainty we all experience dealing with those whom we are unfamiliar. Video of your normal and, now not so normal child helps give perspective if you can pull it together succinctly.

 

You will have to measure advice given in the context of your child. Our experiences are all wildly variable. You don't want to be paralized by fear, nor brush this off. We've heard all degrees of reaction here, so naturally, there is a spectrum of advice.

[BoyIowa]

Not sure how close you are, but if you are within the first 6 months there is a study that is recruiting patients.

 

http://intramural.nimh.nih.gov/pdn/web.htm

[nicklemama]

I would contact the NIH and see if your child qualifies for the PANDAS/IVIG study.

[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.

[nicklemama]

If I had a child w/ a tick bite and a bullseye rash, I'd get on the lyme train and start from there.

 

My DS is PANDAS and has never had a positive strep rapid test or culture (but was never tested when sick) and he has never had elevated blood titers. None is required for a PANDAS diagnosis but it sure makes it easier.

 

My DS had a neuropsych test. Cost us $3000 out of pocket. If I had it to do again, I would have saved my money. Yes, we found out things from the testing. The educational portion was valuable. The psych part was not. Neuropsych's are not MD's and they will not recognize PANDAS. We were told our DS had Aspergers and mild bipolar II. Now how do you have mild bipolar? Anyway.........a week later, he was diagnosed PANDAS. Save your money for Lyme or PANDAS treatment. You are going to need it and the neuropsych testing is not going make any difference on lyme or PANDAS treatment.

 

DS's neuropsych testing lasted about 4.5hrs. I don't know how he made it through.