latimer apt and cunningham results

[eljomom]

Hi there,

I'm going to post to the group....but in a nutshell:

Saw Dr. L today---she is wonderful!! I've never been to a doctor who doesn't rush you AT ALL! Truly listens. The whole time, she was asking questions, taking notes, seemingly attributing things to PANDAS....talking about having our dog treated for strep, etc. She said Tourette's generally doesn't onset like this. Then she checked out my daughter, had her write her name, draw a butterfly, and checked her movements. She said she saw no chorea, her handwriting and drawing was good, so now not convinced it's pandas, but more leaning towards a tourette's tic disorder with ocd. She asked if anybody tried her on antibiotics for a month or two. I said no, but didn't think to tell her that Dr. T offered.

Got her Cunningham test back today too. It was 168. She said she's more interested in the antineuronal antibodies. She also wants us to do Igenex for Lyme, since her p41 IgG and IgM were elevated to rule that out. NO antibiotics.

So, we will wait for those results, probably another 2 weeks. I do have a few more questions and a couple things I forgot to tell her in her history---you always think of things after you leave. I didn't find out about this apt. until late yesterday, so I was scrambling to get everything together for today.

Does she take e-mails from patients??

[momofgirls]

Hi Eljomom,

I just wanted to say that my daughter has beautiful handwriting and drawing skills. She presents with mostly tics and milder OCD. She tested positive for lyme, bartonella, and mycoplasma pneumonia. Her camk was only 137 and antineuronal titers were normal. I think all these kids can present very differently and still have an infectious triggered tic/anxiety disorder. I have heard great things about Dr. Latimer so I am sure you are in good hands. Glad to hear she is running the IGENEX test for lyme. Don't worry, there is probably an infection in your daughter somewhere to blame for her symptoms. Don't give up looking. Hope that helps.

Kim

[eljomom]

Hi Kim,

Thanks:) Who did your Lyme testing? Was it Igenix? WE didn't test for co-infections yet...she said to wait.

So who diagnosed her as pandas??? Does't sound like your daughter was "severe" sudden, so wonder who dx'd. Also what has your treatment been?

 

 

Hi Eljomom,

I just wanted to say that my daughter has beautiful handwriting and drawing skills. She presents with mostly tics and milder OCD. She tested positive for lyme, bartonella, and mycoplasma pneumonia. Her camk was only 137 and antineuronal titers were normal. I think all these kids can present very differently and still have an infectious triggered tic/anxiety disorder. I have heard great things about Dr. Latimer so I am sure you are in good hands. Glad to hear she is running the IGENEX test for lyme. Don't worry, there is probably an infection in your daughter somewhere to blame for her symptoms. Don't give up looking. Hope that helps.

Kim

[momofgirls]

Eljomom

Who diagnosed my daughter? I did! Ha ha she was not a sudden dramatic onset of "PANDAS" like behavior. She started with mild tics and then with each illness they grew somewhat worse and would reprieve some in between so I went to see Dr. B and told him I thought my daughter had PANDAS. He is pretty agreeable in that he feels most kids who tic should be worked up to rule stuff out. She had pretty high immune complexes but no elevated strep at the time so we went with the pandas diagnosis when she responded to antibiotics and steroids. Nine months later, I looked into IGENEX testing thanks to the lyme moms posting on this forum. Bingo! All that time we had no idea really what we were treating but assumed it was some sort of infectious triggered tic disorder. We now see a lyme literate physician for lyme treatment. A combination of antibiotics are typically needed for long term to treat lyme so if your daughter has lyme, I would see an LLMD.

 

Hi Kim,

Thanks:) Who did your Lyme testing? Was it Igenix? WE didn't test for co-infections yet...she said to wait.

So who diagnosed her as pandas??? Does't sound like your daughter was "severe" sudden, so wonder who dx'd. Also what has your treatment been?

 

 

Hi Eljomom,

I just wanted to say that my daughter has beautiful handwriting and drawing skills. She presents with mostly tics and milder OCD. She tested positive for lyme, bartonella, and mycoplasma pneumonia. Her camk was only 137 and antineuronal titers were normal. I think all these kids can present very differently and still have an infectious triggered tic/anxiety disorder. I have heard great things about Dr. Latimer so I am sure you are in good hands. Glad to hear she is running the IGENEX test for lyme. Don't worry, there is probably an infection in your daughter somewhere to blame for her symptoms. Don't give up looking. Hope that helps.

Kim

[ajcire]

Does anybody know what she means by she is more interested in the antineuronal antibodies? I had this done almost a year ago and my son's camk was 141 and all the other things came back elevated but I really had no idea what the heck to do with that information.

[peglem]

Last January we saw Dr.L. My daughter had a CamK of 242, but Dr.L was more interested in her antiD2, because they're not sure what the elevated CamK means and cannot base treatment decisions on it. However, they know that elevated antineuronal antibodies means antibodies against neuronal tissue and treatment can be based on that.

[thereishope]

Was there anything else that would indicate not PANDAS? My son had no tics, no chorea movements, handwriting and drawing was always perfect. Never affected. He was even observed for an hour by someone who leads a TS clinic. They saw no tics or motor problems either. If that's the only reason to possibly dismiss it...that concerns me.

Edited November 10, 2010 by Vickie

[ajcire]

Peg, My son's were all elevated. What would treatment be based on that? I know, real good for me to be asking this a year after I had the results. My son presents very mildly and I have been very hesitant to do anything that will rock the boat so to speak.

[peglem]

Peg, My son's were all elevated. What would treatment be based on that? I know, real good for me to be asking this a year after I had the results. My son presents very mildly and I have been very hesitant to do anything that will rock the boat so to speak.

I don't know what the treatment would be- not sure it points to a specific treatment. But, it does confirm autoimmunity because you definitely have some antibodies to self tissue that should not be there.

[eljomom]

which igenix tests did you do? latimer ordered basic lyme panel and cd57

 

Eljomom

Who diagnosed my daughter? I did! Ha ha she was not a sudden dramatic onset of "PANDAS" like behavior. She started with mild tics and then with each illness they grew somewhat worse and would reprieve some in between so I went to see Dr. B and told him I thought my daughter had PANDAS. He is pretty agreeable in that he feels most kids who tic should be worked up to rule stuff out. She had pretty high immune complexes but no elevated strep at the time so we went with the pandas diagnosis when she responded to antibiotics and steroids. Nine months later, I looked into IGENEX testing thanks to the lyme moms posting on this forum. Bingo! All that time we had no idea really what we were treating but assumed it was some sort of infectious triggered tic disorder. We now see a lyme literate physician for lyme treatment. A combination of antibiotics are typically needed for long term to treat lyme so if your daughter has lyme, I would see an LLMD.

 

Hi Kim,

Thanks:) Who did your Lyme testing? Was it Igenix? WE didn't test for co-infections yet...she said to wait.

So who diagnosed her as pandas??? Does't sound like your daughter was "severe" sudden, so wonder who dx'd. Also what has your treatment been?

 

 

Hi Eljomom,

I just wanted to say that my daughter has beautiful handwriting and drawing skills. She presents with mostly tics and milder OCD. She tested positive for lyme, bartonella, and mycoplasma pneumonia. Her camk was only 137 and antineuronal titers were normal. I think all these kids can present very differently and still have an infectious triggered tic/anxiety disorder. I have heard great things about Dr. Latimer so I am sure you are in good hands. Glad to hear she is running the IGENEX test for lyme. Don't worry, there is probably an infection in your daughter somewhere to blame for her symptoms. Don't give up looking. Hope that helps.

Kim

[EAMom]

Was there anything else that would indicate not PANDAS? My son had no tics, no chorea movements, handwriting and drawing was always perfect. Never affected. He was even observed for an hour by someone who leads a TS clinic. They saw no tics or motor problems either. If that's the only reason to possibly dismiss it...that concerns me.

 

I agree Vickie. It seems that PANDAS kids have such a variety of symptoms. Some kids tic greatly, and some not at all. Other examples:

1) Some kids have a decline in math skills. Saving Sammy did not (he continued to be a math genius even through the worst of his PANDAS)despite pretty severe PANDAS.

2) My dd had urinary frequency, but only at age 4.5...not with her big exacerbation (anorexia/severe ocd) at age 7.5 years.

 

Symptoms can vary greatly with the individual child and also with each episode.

 

In any case, I do agree that it makes sense to rule out Lyme.

Edited November 10, 2010 by EAMom

[EAMom]

It was 168. She said she's more interested in the antineuronal antibodies. She also wants us to do Igenex for Lyme, since her p41 IgG and IgM were elevated to rule that out. NO antibiotics.

 

168 is definitely out of the tourettes range (and is in the high pandas range)...but I like that she is testing for Lyme.