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Hi all! I have a friend whose son (4.5 years old) started with an eye blinking tic. She took him for a strep test and it came back positive. He's being treated with antibiotics (doctor is not talking PANDAS at this point, but said "sometimes kids get a tic with strep) which seemed to have diminished the tic initially, but then it returned to as bad as it had been (before finishing the abx protocol). He finished the abx last Thursday, Friday a second tic began (throat clearing). He's not sleeping well, but behaviorally seems ok and doesn't have any other obvious PANDAS symptoms. The doctor wouldn't retest for strep until he's 48 hours past the end of the antibiotic so they haven't done that yet, but will. Meantime, I was hoping this group could answer a couple of questions:

 

1) Anyone out there have a child with JUST tics?

2) if so, did they stop immediately after the strep was eradicated? If not, how long did it take?

3) Any thoughts on this: if strep induces tics and no other symptoms, do you treat like PANDAS or is this just strep induced tics and no big deal?

 

Thanks so much for any feedback!

Hayley

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Knowing what I know now this is probably just the beginning of pandas. Looking back my sons first couple of episodes were mild tics only which went away within about a month or so and I am sure it was related to an illness of some type and was treated with abx. The problem was I did not know enough to link it all together. I did not even know what my son was doing was a tic. I assumed nervous habit or eye irritation. Looking back I know better. He was also younger at the time. Also some of the other pandas symptoms can be easily ignored or missed in a child so young.

 

Your friends child may fully recover from this and never again get another strep infection and may be fine. She should just be aware that as he gets older each subsequent infection may bring about more complex symptoms. After reading this forum for a couple of years now, i know that many of us on here most likely missed our children's initial pandas episodes. It was not until it got more severe that we were like "what the heck".... So that being said, sounds like your friend is way ahead of the game. I think as long as she can treat any strep or other infection immediately and aggressively her son will probably be fine.

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I have some doubts about the way symptoms are reported in this case. First, you say there are just tics and no other symptoms. but then you add that he is not sleeping well. that's two symptoms pointing to auto-immune issues. then you add another tic, which is a third symptom - tic, sleep, and change in tics.

are there other symptoms, esp those easy to overlook like frequent urination. stomach- and head-aches?

i would look for PANDAS dr or LLMD asap

Edited by pr40
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Thanks, all! PR40, I asked about frequent urination, other aches and pains, eating changes, sensory issues, fears, all the others from the traditional list and it's just the tics (I didn't consider two different tics two separate symptoms, but one symptom that is getting worse/multiplying) and possibly sleep though the sleep is one of those, might be related or might just be a 4.5 year old in a case where mom has been travelling, big schedule changes with new MUCH longer days of school, etc. The family isn't dismissing that as a symptom at all, but is watching. This is a family very close to ours who has seen my daughter's experience close-up, does get it and is really freaking out about all this. She's just trying to figure out how alarmed she should be...and whether treating the strep aggressively with abx might stop whatever is going on in its tracks. I think if the tics don't remit soon she will probably make an appointment with Dr. L who is local here. Appreciate all the feedback and will pass it along! Thanks again.

 

Hayley

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Our DD, who is now 17 started out EXACTLY like this...eye blinking tic at the age of 5 with no other symptoms. I had Sydenham's Chorea at age 7, so I knew this could be related to strep. We had her tested and she was positive for strep. Over the years she had strep several times, and tics would wax and wain. As she got older, we realized she has some minor OCD and sensory issues. And she was diagnosed with ADD around the age of 8. My educated guesss is the ADD is from PANDAS. It is hard to distinguish co-morbid symptoms in very young children, especially when their PANDAS / PANS is on the minor side....this is our daughter.

 

On the other hand, is our DS, who is now 15. He started with tics at age 10 after strep exposure. Unfortunately, his symptoms were much more severe. Tics were (are) the main issue, they are severe... but he also presented more traditional PANDAS / PANS symptoms...separation anxiety, OCD, brain fog, ADHD. The neuro psych symptoms increased with age. We are still trying to figure his puzzle...still some type of autoimmune inflammation going on we think. He is able to attend school, but struggles a lot and I know he missed about 20 days of school last year.

 

We have friends who have young kids with tics (facial and eye blinking) and they know about PANDAS from us. There has been postive strep, but not enough other symptoms to necessitate seeing a PANDAS specialist. They are just diagnosed with a transient tic disorder...which is probably a mild form of PANDAS in my opinion. I have learned there is a wide range of PANDAS / PANS severity. It depends on the child. I think it would be beneficial to have some sort of measurement scale, 1 to 10 or something like that.

 

Hopefully, this child's symptoms will remain mild. Many kids have this "transient tic disorder", and grow out of it. But, I would encourage them to watch their child and be aware of these other neuro pysch symptoms that can increase in the way they present with the child's age. And if needed, definitely have them see Dr Latimer in Bethesda. She is the best doctor we have seen for PANDAS. We now have an appointment to see a pediatric rheumatologist at Duke in November for DS15. Dr Latimer referred us to her. She doesn't treat PANDAS, but Dr L said she can test for more autoimmune inflammatory causes. We are hoping she can find something we have missed in the past, and treat him.

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