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Twitching facial, curling of toes, clunging of hands PANDAS? but on OC


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Yes, definitely. Both of our children have PANDAS (clinically diagnosed by a nationally known PANDAS doc) and did not show any apparent OCD symptoms. I had PANDAS as a child and did not show apparent OCD symptoms. But, with that being said, the OCD can show itself later, although may be mild. Since we are more aware of all the encompassing PANDAS symptoms, we can now see that both children have OCD...and other symptoms, including sensory issues, anxiety issues, ADD / ADHD, etc. And I now realize I had/have some minor OCD. But, I do think the kids with low OCD can have worse tics, and this has proven to be the genetic traits from me to my children.

 

The tics can wax and wane and move around different muscle groups. Our DS currently has a lot in his face and neck, drives him crazy. His hand and finger tics also are very bothersome. Our DD has a slight head shake, that she can normally disguise when not at home, and she has a wrist tic, where she rotates and clicks her wrist over and over.

 

I outgrew most of my symptoms by the time I was 18, so there is hope...cause the docs, from what we have experienced don't have good treatment options for tics.

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A number of Swedo's original studies involved kids with tics only. They more recently distanced themselves from this group (tic only kids) because of some negative stuff that tourettes researches have attacked them with, so now they stress the OCD part - where previously they stressed the tics.

 

My son presented mainly with tics (OCD may show up later, or may not). A significant number of kids only have tics, or tics are the main symptoms and others are to a lesser extent. Most kids have more than one symptom and there is a long list of symptoms beyond OCD. And he could be in the 5% - 10%(?) that only present with tics too. So, its worth seeing a pandas specialist and possibly trying some antibiotics or other immune therapies, as well as getting a thorough immune work up.

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Please take a look into Sydenham's Chorea. Dr. L. confirmed PANDAS in our son but because of some of the movements you are describing she also said he had S. C. At the A&M symposium, Dr. Swedo said that if you have the Sydenham's Chorea diagnosis, that it is much easier to get treatment because this is a known and recognized illness. Maybe this is an option you can explore, however I do not know you story as I have not been posting lately. Good luck! Linda

Edited by 3boysmom
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I think it is important to remember that OCD in maybe its milder forms can be linked to ODD,meltdowns, bedtime routines, other emotional lability etc..... Plus, much of the behavior stuff is always subject to the parents interpretation of what is going on with the kid.

 

Ahh, but when the tics/chorea/movements that just do not look right appear, you start asking what is going on?????? If you start reading, many of the neuropsych diagnoses have SO MANY overlapping symptoms, even in adults.

 

Does anyone else ask "Why in the world, is it so hard for docs to believe in Pandas/Pitands and treat it????? With all we know about Scarlett Fever, Rhumatic Fever, Sydenham's Chorea and the list goes on..............

 

The more I dig, the more I get ticked off and feel as if we are not being told the whole truth from the AAP.

 

God Bless you on your journey.

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It sounds like you are describing what could be "milk maid's grip or choreic hand - it is a classic sign of Syndenham's Choreas - and if you can get that diagnosis that is great - it is basically what pandas is based upon, but it is like 3boysmom said - much easier to get treatment.

 

Google ":milk maids grip or grasp" and Syndenham's Chorea

 

from one wesbite I found on Syndenham's -

 

1. Choreic Manifestations

 

begins abruptly or insidiously about 4 months after infection

chorea usually generalized but can be unilateral

affects face, trunk, and distal extremities

typical signs:

milkmaid's grasp: relaxing & tightening hand shake

choreic hand: spooning of flexed hand & extended fingers

darting tongue: unable to maintain protruded tongue

pronator sign: arms/palms outward when held above head

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normally I would not video tape my son but I am desperate to help him here is 2 clips of what he is doing these are the small tics they get worse through out hte day and they are now starting to happen multiple times in a row I noticed...

 

Clip 1

 

 

 

Clip 2 further view of him

 

 

 

I can get a good video of the entire body one but its mostly when he walks

 

 

please help me find the answer to what I can do to help him he says it hurts him and he has bruzed toes and refuses to wear shoes because it hurts his feet when he twearls his toes. he does this over and over again all day sometimes he get 5-10 min break but it keeps coming back.

Edited by NEWARK
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Newark,

 

You need to go see a pandas specialist or a neurologist - only they can diagnosis chorea. I can't really see what he is doing on the video, but even if I could, I would take him to a neurologist and/or a pandas specialist. A neurologist would be more famililiar with types of chorea and how to get your child to do it for them. If you think you can capture some on video, thats great, take it with you to the neurologist.

 

If the neuro says it is a tic - and does not give you a S.C. diagnosis, and you are still convinced something is wrong, then I would see a pandas specialist. Or if you are in an area with a really good pandas specialist, you could start there.

 

There is a list of doctors that have helped with pandas "pinneed" at the top of the general pandas board. If there are a couple near you - you should post who you are thinking of seeing, and people will PM you. Some of them are truly speciialists, and some are just helpful - but not as knowledgeable. Dr B., Dr K, Dr M and a handfull of others have been treating this for years, and some are just docs that have one patient that they have helped.

 

Personally, I'd start with a neurologist. If your child does not have a lot of other pandas symptoms and you suspect chorea, they will be more familiar with that diagnosis than even a pandas doctor. And make sure to get a strep titer test (ASO and Anti-Bnase(?)), even a neuro will probably give you that if you ask. The sooner you get that the better - they don't mean anything if you don't have raised titers - you could have had strep and they don't go up - BUT if they are high, your child definatly had strep recently or currently has it. they go down over time - so the sooner you get it done the sooner you may have some evidence that your child had some form of strep that went undiagnosed, or a different presentation. If you have a good relationship with your pediatrician - give them a call and see if you can get a blood draw for that ASAP. You might have to wait to see a pandas doc or neuro, and you don't want to wait on that test (as I said, the numbers go down...) This isn't a pandas or SC test - it just shows that you recently had strep (a know trigger for both of these). And a negative does not mean much - but like I said a positive means alot.

 

 

There are lots of types of strep other than strep throat...so you can have it without knowing it, as many on this board well know. In addition to that, there are other things that can trigger pandas (but not SC) that a pandas specialist will also test your son for. Keep us posted on what you decided.

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I have has the strep test (ASO) and it was slightly elevated at 284 few weeks ago we did it again 2 days ago and its at 245 which is considered normal now I have had him on antibiotics and a patch. But he is still doing it. I am in contact with a neurologist and they ran a bunch of tests his FERRITIN just came in low. Anyone has had this happen to them? I looked up online says that it means he is low on Iron. Could this all be because of low iron? Been feeding him all kids of food with iron today and will do that few days see if anything changes.

Edited by NEWARK
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