What to do at first Neuro visit?

[lkaanda]

Hello. I have an appt. for my DD8 for her first visit and am wondering what to be sure to ask about, have tested for etc. She started having sudden tics about 2 weeks ago. It started with head shaking and has increased since then. She also makes a face like she is sniffing, although not actually sniffing. She mentioned she also feels like she needs to tighten her arm as if flexing her muscle, and tighten the muscle in her jaw. She does a little blinking at times also. This is all after having 2 strep infections about a week apart (after finishing her antibiotics). After the second round of antibiotics, she lost her appetite and would hardly eat for about a week or so. She said she felt like she would vomit if she did. As soon as her appetite started to come back the tics started. She also has been very emotional, crying without even understanding herself why. From all the research I have been doing, it certainly seem to me like it is PANDAS. I just want to know what I should talk about other than all the information about what has been happening. Is there any tests the doctor should be telling me to have done? Also, do most doctors seem open to the idea that it could be this? Have you come accross some that feel it is not proven or does not truly exist? Thanks in advance for any help. I want to make sure I am getting any information I can.

[butterflymom]

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Edited October 5, 2015 by tampicc

[peglem]

Hello. I have an appt. for my DD8 for her first visit and am wondering what to be sure to ask about, have tested for etc. She started having sudden tics about 2 weeks ago. It started with head shaking and has increased since then. She also makes a face like she is sniffing, although not actually sniffing. She mentioned she also feels like she needs to tighten her arm as if flexing her muscle, and tighten the muscle in her jaw. She does a little blinking at times also. This is all after having 2 strep infections about a week apart (after finishing her antibiotics). After the second round of antibiotics, she lost her appetite and would hardly eat for about a week or so. She said she felt like she would vomit if she did. As soon as her appetite started to come back the tics started. She also has been very emotional, crying without even understanding herself why. From all the research I have been doing, it certainly seem to me like it is PANDAS. I just want to know what I should talk about other than all the information about what has been happening. Is there any tests the doctor should be telling me to have done? Also, do most doctors seem open to the idea that it could be this? Have you come accross some that feel it is not proven or does not truly exist? Thanks in advance for any help. I want to make sure I am getting any information I can.

Have you checked after 2nd round of abx to see if the strep is really gone?

 

Many doctors will pooh,pooh the PANDAS idea. If this is a run of the mill (not PANDAS connected) doc, I wouldn't mention PANDAS at all. I would just explain what you've said above about how it started w/ the strep infections and maybe ask if this could be caused by an infection. If they are open to PANDAS, they'll connect the dots and it will massage their ego a bit if they think it was their idea. If they do not suggest checking out the connection- then I'd push further about ruling out PANDAS (can't be done, really- but might get them to investigate it for you, just to prove you're wrong). With docs who are unfamiliar, or even opposed to the idea of PANDAS, unfortunately you have to play them sometimes.

[laure]

Ask for ASO strep titers, but also anti DNase B titers, as high numbers there would indicate an increase in the strep-fighting antibodies, which would cause neurological symptoms if the numbers are high enough (encephalitis-like condition in the brain). That was the only definitive marker my daughter had, and really opened up the doctor's eyes to the fact that she wasn't crazy, but was in fact ill.

[airial95]

Ask for ASO strep titers, but also anti DNase B titers, as high numbers there would indicate an increase in the strep-fighting antibodies, which would cause neurological symptoms if the numbers are high enough (encephalitis-like condition in the brain). That was the only definitive marker my daughter had, and really opened up the doctor's eyes to the fact that she wasn't crazy, but was in fact ill.

 

 

Keep in mind, however, that not all kids have elevated titers, if she had positive throat cultures, even without titers it still fits the PANDAS criteria. I agree that getting the titers taken is a logical step - but if the Dr. is not familiar or a skeptic, they may use the absence of titers to close the door on the PANDAS discussion.

 

It happened with our neurologist, even with the confirmed strep tests, and a confirmed dx from Dr. Murphy (the specialist here in FL.)

[MichaelTampa]

Are there some good tests to look for inflamation of some sort? Like C3 and C4, or C3A and C4A? Not an expert on them, but have seen discussion on them in this forum in the past. If you don't have them, perhaps be prepared to ask for them? If you have them, perhaps bring the results?

[lkaanda]

Thanks so much for all your helpful replies. I brought her into her regular pediatrician, who of course said it was just a tic. Right now we are scheduled with a neurologist who could see us relatively quick. Most seem to have appts. about 6 months out. If I don't feel like I am getting anywhere I will try one of the PANDAS specialists. I live in NJ, and it looks like there is one here. Thanks again for your ideas. At least now I feel like I know what he should be talking about with me as well.

[Phasmid]

Bring something that outlines her history so doc can read it and have a complete picture. Try to include everything you can remember, with dates. My son's new neurologist really said this was useful to her, rather than taking notes as she observed and took notes. Also, sometimes another person takes a history and often they do not write down everything you tell them.

[eljomom]

Welcome, and please keep us posted on your journey. My dd had sudden onset of tics, but it was following a couple years of some ocd things, which I wrote off to "just a phase." In my experience, it has been harder to get docs to see outside the box with the tics, even though pandas/pitand is "ocd and/ OR tics"...

[lkaanda]

Thanks again for all your advice. I will definitely bring all the information I can with me, and I will let you know how it goes. Thanks!

[lkaanda]

Update...We went to our first neuro appt. today, and it went pretty well. The doctor did say based on the symptoms it could be PANDAS, but did say he thought it was very rare. Its funny he should say that, because after talking to people it seems a lot of people know one or more families dealing with it. He is running the DNase test and the ASO test. He is having her get another Group B and A throat culture also. The one that I was not aware of, is an MRI of her head to rule out any abnormalities. Has anyone had this done? What do you think of it? We have an appt. scheduled to go over the results in a few weeks. He seemed open to it and yet kept mentioning how rare PANDAS is so it was a little strange. Hopefully we will have some results soon. Thanks again for your help.

[peglem]

Update...We went to our first neuro appt. today, and it went pretty well. The doctor did say based on the symptoms it could be PANDAS, but did say he thought it was very rare. Its funny he should say that, because after talking to people it seems a lot of people know one or more families dealing with it. He is running the DNase test and the ASO test. He is having her get another Group B and A throat culture also. The one that I was not aware of, is an MRI of her head to rule out any abnormalities. Has anyone had this done? What do you think of it? We have an appt. scheduled to go over the results in a few weeks. He seemed open to it and yet kept mentioning how rare PANDAS is so it was a little strange. Hopefully we will have some results soon. Thanks again for your help.

We've had 2 MRIs. Both normal. But, I think its worth ruling out structural causes. If I had to bet, I'd say this guy is not going to be supportive of a PANDAS dx, based on the fact that he's already saying how rare it is (trying to talk you and him out of it) and if those titers do not come back elevated he's going to say its not PANDAS. Hope I'm wrong, but that is almost exactly my experience with a local rheumy.

[JJMom39]

Re: the MRI, sounds like the Dr. might be trying to rule out or rule in other causes for your dd's symptoms. And an MRI seems like a fairly standard test for a neurologist to order. My ds has had 2 MRI's. The first one was ordered by his first neurologist to look for possible causes of the tremor he has. He just had the second MRI a few days ago. That one was ordered by the neurologist who is treating him for PANDAS. She ordered it because she said sometimes inflammation can be seen after a recent PANDAS exacerbation. I don't think that the presence of inflammation is definitely diagnostic of PANDAS, but would be an indicator depending on where in the brain it is located. I could be wrong about that though. We are pretty new to all of this too. We don't have the results of his recent MRI but I will post them when we do.