Increase in choreiform movements, tics, tremors

[AmySLP]

My daughter's primary issue with PANDAS is movement based. She is getting so much involuntary movement, that many of my colleagues who are PTs & OTs in adult care are questioning why I have not had a typical neuro work-up including imaging. They think I should be ruling out a tumor. My daughter has an extensive strep history. What do you all think? Dr Latimer was the neurologist who diagnosed her.

[dcmom]

We saw a neurologist her in NJ (usually see Dr L)- during last exacerbation, because it was Christmas time. He does not seem to be a major pandas believer, but did agree to treat them. He did want an MRI and VEEG to rule out other possibilities. I was confident there would be no findings, and was right, however- it is not a bad thing to be positive, and insurance covered it all.

 

I love Dr L- she truly understands pandas- but some other docs you may see down the road might feel more comfortable if you have more test results....

[michiganpandas]

we did.....they wanted to rule out a tumor, but they totally thought it was not a tumor....mri came back good......the only thing it showed was cysts in the sinus region which they said everyone has and is "normal"...i didn't even know that those showed up until i got the records myself to review them.....they had to put her under b/c of the tics and she is 8.

also....please let me know how it goes if you decide to take off the abx....(don't you hate all of these decisions!!!)

[peglem]

2 completely normal MRIs here as well.

[JJMom39]

My ds8 has a condition known as benign essential tremor and has neuro checks every 6 mos. He has had 2 MRI's--one pre-PANDAS dx and one post. The one pre dx was to look for possible causes of his tremor, like a tumor, and the one post dx was to look for inflammation. Both MRI's were normal. I do think it's a good thing to have a complete neuro work up if you are concerned about other potential issues or to rule them out.

[AmySLP]

Do you think I need to see a "local" neurologist for that work-up or can my pediatrician order those tests and take the result s with me when we see Dr Latimer again in July? (we haven't see her in 2+ years; have been seeing Dr. .

[911RN]

Do you think I need to see a "local" neurologist for that work-up or can my pediatrician order those tests and take the result s with me when we see Dr Latimer again in July? (we haven't see her in 2+ years; have been seeing Dr. .

 

 

My son has been under care of a Neurologist for 3 years (diagnosed with Landau Kleffner Syndrome). For starters, I am surprised (and a little dismayed) that any Neuro would not do a complete Neuro workup before treating a child for Suspected PANDAS, supposed psychiatric or any other movement type disorder. This would include a MRI (at the very minimum). A supporting Pediatrician can certainly order MRI- as could any local Neuro. Depending on where you live and the number of pediatric neurologists (in your area) may influence the ability to get this done prior to July and whom is best to order it- the quickest. The shortest time to see a Peds neuro in our area is about 3 months. Longest is about 6 months. Your regular pediatrician may be able to order is sooner.

 

Any of our children that are not neurotypical, in every sense, should have had testing to look for true medical "reversible causes." Other possible abnormal pathology that could cause any of these issues. More often than not- the MRI's are normal but that should not be assumed or taken for granted. This should be proven and known before going forward with treating children for a disease process that is basically a clinical diagnosis of related symptoms that is not necessarily proven by a defintive test. Simarily, all children should be "medically cleared" before being treated for any type of dx in the psychiatric realm.

 

I had a very interesting case show up in the ER- lady in her late 30's to mid 40's. Had a history of depression- treated on meds in the remote past and then went off them and did OK. Started having fatigue, "depression" and neurological issues- went to her PDoc. Tried on a bunch of different meds for about 5 months with no help. Showed up in ER with slurred speech, entire change in personality, head injury like. We did a CT head- she had advanced brain tumor causing much pressure and shifting/herniation of the brain. Sadly, I'm sure this lady did not make it and had a unnecessary premature death because she was not medically cleared prior to beginning on meds for supposed depression. This is an extreme example but my point is- medical normalcy and pathology should be firmly established before any other type of "treatment" is considered for psych issues, movement disorders, tics, PANDAS etc. This is standard of care. This lady's true illness got missed because standard of care was not followed. She was not depressed- she had a severe brain tumor!!

 

If you already have relationship with Dr L- not sure why it could not be ordered by her and I'm a little surprised a doc of her caliber would treat for anything without this having already been done?? I agree with your colleagues- complete neuro workup needs to be done if you have been on this path for this long and it hasn't been done so far.

 

Just my opinion- not picking on docs- don't see either of the ones you mentioned nor do I have an opinion good on bad on either of them....to rule out reversible causes for neurological symptoms is the starting block... not an ending point. This is medicine 101. Standard of care. 1st year med school. Not any advanced or out of the box thinking. I am not trying to scare you- more than likely- MRI for your child will be normal but that should be firmly established and proven before moving forward with PANDAS treatment.

[oivay]

my daughter's problems with pandas were almost all movement based too, several bouts with severe chorea, although cunningham test showed pandas.

she had a brain MRI during the most severe bout when she was hospitalized, under general anasthesia (she was moving/shaking/twitching too severely to go into the machine without sedation), and it was negative.

 

it seemed like each episode got worse. she had a total of about 4 episodes over the course of about a year, although the first one was probably the most involved (head/neck/eyes, legs/severe dysphagia) . it was just awful and almost no one had ever seen anything like it.

 

at first, she responded well to abx and steroid bursts, with some valium to keep her still enough to sleep. but, after a while, even that wouldn't work. we had pharesis done in march, and that was the only thing that totally remediated the tics/chorea.

 

also, she had quite an extensive history of strep and would always test positive. younger daughter would too, but would generally be symptom free. unusual variants of strep.....headaches, stomach aches, rash on rear end, and sometimes throat cultures, generally with no fever. it got to the point where the doctor would just do a rapid strep/culture on both kids before even considering anything else.

Edited June 21, 2011 by oivay

[danddd]

at the time when dd was in major exaceration, mri was fine, eeg fine, brain spect showed some abnormal something or other. glad we had them though, to get it overwith.

[Worried_Dad]

Our son's symptoms started with the more typical ARF/SC variety (migratory joint pain; rapid, jerky, uncontrolled movements in limbs) and he did have MRI's which were "unremarkable" but complicated by his "artifacts" (movement during procedure). Local ped neuro quickly dismissed the movements as psychogenic (despite the fact that they started after a high fever... sigh). Highly elevated ASO eventually led to an initial SC diagnosis, later changed to PANDAS.

 

We did volunteer for a research study conducted by an awesome ped neuro in Detroit (Dr. Harry Chugani). Dr. C was researching a new type of PET scan, which showed inflammation in our ds's basal ganglia.

 

As a precaution after the ARF/SC diagnosis, we also had electro- and echo-cardiograms. All normal, thank goodness!

Edited June 23, 2011 by Worried Dad

[Mary M]

Sudden onset behavior changes at age 7.5 prompted our ped to order a CT Scan with and without contrast to R/O a mass. Scan was normal. Five years later during 3rd major exacerbation of PANDAS our dd received Dr Chugani's PK PET Scan at Childrens Hospital of Detroit and results were positive for activation in the basal ganglia (caudate and putamen to be specific). Movement disorders have been present during each exacerbation but this latest has been particularly movement based.

Mary

from Michigan

[beeskneesmommy]

We go to CHOP for PANDAS treatment. My son (4) has a pretty classic case of Strep:PANDAS. However, I have wondered why we have not had an MRI or CT suggested. Insurance pays for almost everything under the CHOP umbrella, so maybe I will ask next time. Is it very invasive or traumatic? Perhaps that is why the doc hasn't ordered the scans. My son cannot be put under because he has a PANDAS response to almost every med, especially anesthesia and even Benedryl. For those who have, are the docs able to see anything different in the Basal Gnaglia that might suggest something is going on in there?

[beeskneesmommy]

In addition, I would think that the docs would feel more comfortable ordering these tests for liability reasons. r/o other brain based illness would be significant as well in continuing to provide treatemtn for the PANDAS.

[michiganpandas]

the basal ganglia did not show any inflammation in my dd's mri....and she was in full blown panda's then....but, they say you can't see it in an mri??....my guess is that doctors can tell with the dumb tests that they do (follow the finger tests) that they don't need an mri......i insisted on one and they insisted we didn't need one....i guess they were right.....but, now i don't worry (about a tumor!)