What else can I do?

[colleendonny]

Hello all,

I posted a few days back about the sudden change in my 4 year old daughter, Kayleigh. Last Thursay she started displaying weird symptoms. They were, alking with her mouth closed (repeating words in her head), mouth tics ( lip smacking, running her tongue along her teeth, moving her jaw side to side, scratching objects, hyperactivity...

 

Now the mouth tics have lessened, bt she is still a bit hyper but the talking with her mouth shut has gotten a lot worse. At home she'll keep saying that she's doing it and wants to stop but can't. She had a dream that I burned her 2 year old brother's head with a hot pan. She told my 4 month old daughter that she was going to stick her with a fork, then said just kidding. Last night her dream was that she sat on her little brother with no underwear on. When it's me and the kids home and my husband here she'll say the curse words aloud and say that she can't stop saying them in her head. The words are like B*tch, idiot, jerk, hate. She keeps saying that in her head she is saying how she hates everyone and she doesn't want to say that.

 

But get this! Her teacher says if I haven't been telling her what has been going on, she would have never guessed. She hasn't yet said the swear words aloud when we have company over, which I have had to because I just need help. She seems better when she is being amused and kept busy. I never had to amuse her all day. This makes me wonder if it is behavioral/ jealousy because of the other kids. But them I'm thinking, wow, if it is then she is an amazing actress to keep this going for a week. I don't she would be able to do that. She startes crying when she is here saying she reallly wants to stop but can't.

So, I'm wondering, could this be OCD! She does tell me that she hears the voices at school, but doesn't tell her teachers that she does. I'm hust not sure how you can turn off the behaviors. Know what I mean?

 

Like I posted before, she did have a lyme like rash in May and the pedi's nurse saud not to bring her in. I should have.

I did get her labs back. Pedi said LYME was negative. the result says <OR= 0.90. But I did order a kit from IgeneX. I'm waiting on it and I will order the Bartonella with it. Anything else you suggest I order with it?

 

Her Anti Strep O Titer was <6. I believe it says <150 IU/mL is normal.

Mycoplasma Pneumonniae AB, IGM was 456.

M. Pneumanie AB IGG, EIA was <=0.90

 

The things that were a bit off was a high platelet ct at 423, high lymphocytes at 56.8%. Her glucose was a small bit high at 102 and carbon dioxide a little low at 21.

 

So, we have an EEG set up on Wednesday. A meeting with a neuroligist at Children's hospital Waltham MA that believes in PANDAS and LYME.We see him Nov 16th. I read his name from on the board here. And we are seeing a behavioral specialist, well I am meeting, to discuss symptoms that Kayleigh has.That is on the 16th.

 

So what else can I do in the meantime? Someone else reccommended that maybe this is NMDA encephalitis that we may be dealing with? Anyone know how to get this test? I'm guessing through spinal tap. WHo would order this, our pedi or neuroligist?

 

Anything else I should be doing in the meantime? Does her case even sound like a PANS? And is it does, what are the red flags for it besides the sudden onset and age?

I'm also posting this on the LYME page.

 

Thanks so much!

[peglem]

Hello all,

I posted a few days back about the sudden change in my 4 year old daughter, Kayleigh. Last Thursay she started displaying weird symptoms. They were, alking with her mouth closed (repeating words in her head), mouth tics ( lip smacking, running her tongue along her teeth, moving her jaw side to side, scratching objects, hyperactivity...

 

Now the mouth tics have lessened, bt she is still a bit hyper but the talking with her mouth shut has gotten a lot worse. At home she'll keep saying that she's doing it and wants to stop but can't. She had a dream that I burned her 2 year old brother's head with a hot pan. She told my 4 month old daughter that she was going to stick her with a fork, then said just kidding. Last night her dream was that she sat on her little brother with no underwear on. When it's me and the kids home and my husband here she'll say the curse words aloud and say that she can't stop saying them in her head. The words are like B*tch, idiot, jerk, hate. She keeps saying that in her head she is saying how she hates everyone and she doesn't want to say that.

 

But get this! Her teacher says if I haven't been telling her what has been going on, she would have never guessed. She hasn't yet said the swear words aloud when we have company over, which I have had to because I just need help. She seems better when she is being amused and kept busy. I never had to amuse her all day. This makes me wonder if it is behavioral/ jealousy because of the other kids. But them I'm thinking, wow, if it is then she is an amazing actress to keep this going for a week. I don't she would be able to do that. She startes crying when she is here saying she reallly wants to stop but can't.

So, I'm wondering, could this be OCD! She does tell me that she hears the voices at school, but doesn't tell her teachers that she does. I'm hust not sure how you can turn off the behaviors. Know what I mean?

 

Like I posted before, she did have a lyme like rash in May and the pedi's nurse saud not to bring her in. I should have.

I did get her labs back. Pedi said LYME was negative. the result says <OR= 0.90. But I did order a kit from IgeneX. I'm waiting on it and I will order the Bartonella with it. Anything else you suggest I order with it?

 

Her Anti Strep O Titer was <6. I believe it says <150 IU/mL is normal.

Mycoplasma Pneumonniae AB, IGM was 456.

M. Pneumanie AB IGG, EIA was <=0.90

 

The things that were a bit off was a high platelet ct at 423, high lymphocytes at 56.8%. Her glucose was a small bit high at 102 and carbon dioxide a little low at 21.

 

So, we have an EEG set up on Wednesday. A meeting with a neuroligist at Children's hospital Waltham MA that believes in PANDAS and LYME.We see him Nov 16th. I read his name from on the board here. And we are seeing a behavioral specialist, well I am meeting, to discuss symptoms that Kayleigh has.That is on the 16th.

 

So what else can I do in the meantime? Someone else reccommended that maybe this is NMDA encephalitis that we may be dealing with? Anyone know how to get this test? I'm guessing through spinal tap. WHo would order this, our pedi or neuroligist?

 

Anything else I should be doing in the meantime? Does her case even sound like a PANS? And is it does, what are the red flags for it besides the sudden onset and age?

I'm also posting this on the LYME page.

 

Thanks so much!

Get the book, "What To Do When Your Brain gets Stuck". It helps kids understand OCD and gives them strategies for fighting it. Be careful with behavioral therapy- giving consequences for behavior that is not on purpose may result in the child becoming unwilling to tell you when she has problems, especially w/ obsessive thoughts, which you can't see.

[philamom]

Along with "What to do when your BRAIN GETS STUCK - a kid's guide to overcoming OCD", there's also "What to do when you WORRY TOO MUCH - a kid's guide to overcoming anxiety" both by Dawn Huebner. They are great and include helpful activities. Another children's book is "Up and Down the Worry Hill" by Aureen Pinto Wagner.

 

btw- was a DNASE Strep titer done?

[colleendonny]

Thank goodness for Amazon. I just ordered the book. Will be here on Tuesday.

You know I don't think that was done... I am going to call on Monday and have her go in again to the the lab for the Dnase. And to check again for her lymphocytes and to ask about the M Pneumonaie AB IGG EIA.. Then again in the week when the IgeneX kit comes in.

[KaraM]

My daughter was able to hide things at school as well. The teachers knew what was going on at home and were supportive, but they said you would never know at school. There have been discussions on the board about this before. Lots of kids hold it together in front of others, then let it all out at home.

 

Did your Lyme test list any specific band numbers? Which test was done? The ELISA or a Western Blot? I'm sure you'll get some questions/responses on the Lyme Board as well. If it was just the ELISA, that is a screen and can get false negatives and false positives. It's not very reliable. The Western Blot tests for antibodies to several different protein bands, each with a different number. So you may see numbers like 41, 39, etc. Some of the bands are specific to the Borrelia bacteria (i.e. Lyme), others can be found in other bacteria as well. If you test positive to one of the bands that is specific to Borellia, some LLMD's will say that means you've been exposed to Borrelia. Others say you need more than one band... In the end, it's a clinical diagnosis based on symptoms and bloodwork combined.

[bsimon3]

Have you considered starting her on an antibiotic while you wait for the tests and upcoming appointments? If it is a bacterial infection such as strep or mycoplasma causing this, perhaps abx would be able to stop it in its tracks.

[saidie10]

Have you considered starting her on an antibiotic while you wait for the tests and upcoming appointments? If it is a bacterial infection such as strep or mycoplasma causing this, perhaps abx would be able to stop it in its tracks.

 

I say try and her her on abx and see if you see improvement. It definitely can not hurt to try this while you are waiting for the appointments. Good luck!