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My son has tics, possible PANDAS?


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I'm just starting out here. I'm suspecting PANDAS, but I feel like we're still in the investigation phase and trying to find all the puzzle pieces.

 

My ds is 9. He started having an eye roll tic back in April. After he came home from Grandma's house with his eyes rolling multiple times a minute and finding out he literally had a dairy and processed carb diet while there (seriously, dinner was ice cream sundaes), I googled food allergies and tics. I found these forums at that point and saw many of the tic kids had dairy eliminated from their diets. When we eliminated dairy, that tic went away. If we give him dairy, it comes back. That has been pretty reproducible.

 

My PANDAS suspicions started when we first went to our family dr. He is familiar with PANDAS and has treated PANDAS before. Ds's aso titers were a bit high, 347. I'm very sure, in hindsight, that me, dh, and ds all had strep in January. All 3 of us got insanely sore throats for 2 days and then just sick for several more. My dd (ds's twin) didn't seem to get it. What really has made me suspicious is that ds had a new vocal tic show up. It showed up 4 days after he was complaining of a sore throat. I didn't put the tic and the sore throat together as possibly connected till about 5 days ago. By then, he felt fine.

 

Going forward, ds has allergy testing next Wednesday. We know that he has seasonal allergies and tree nut allergies. I really am wanting to know if the dairy is an allergy or does it fall into intolerance or possibly the strep used in processing dairy affecting ds. If any other food allergies show up, I will work on eliminating them.

 

From a dr. standpoint, I'm at a bit of a stand-off with our family dr. I really like him and is willing to consider PANDAS. He just wants us to go to a certain neurologist. This neurologist has absolutely HORRIBLE reviews on-line. Seriously, no recommendations. I also work in special ed. Nobody I know will recommend this guy. He also wants to run an eeg before even talking to us about what's wrong. Unless I'm missing something, an eeg wouldn't really be of much assistance here. There is another neuro in town, but he has a reputation of being even more test crazy. Which leads to the stand-off. Our family dr. won't help us anymore till we see a neurologist, but I'm not convinced of the competence of either of our choices.

 

So, here's the summary. Ds, 9, has a motor tic which is controllable by eliminating dairy. Ds developed a vocal tic within 4 days after complaining of a sore throat. He has shown elevated strep titers. He has messy handwriting that has been pretty bad his whole life, but occasionally is unreadable. He shows no other signs on the PANDAS symptom list. I plan on seeing what comes out of the allergy test next week and working on diet from there. I also plan on checking back in with our family dr. after the allergy test and seeing if he would order the Cunningham Panel for us.

 

Any advice on if we should pursue the Cunningham Panel? Should I just suck it up and do the neuro and the eeg? Should I be looking more at Tourette's?

 

Ds is generally a very healthy kid. He's active, plays sports, does extremely well in school and is advanced at math. He gets a bit silly sometimes, but can tone his behavior down when needed.

 

Thanks,

 

Marissa

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Have you thought much about any OCD your son might have as that is one of the major hallmarks of pandas/pans. Keep in mind that OCD presents itself very differently in kids. You can google ocd in children and it can give you many examples of how ocd might present. Also, I hope you got copies of all labs that have been run so far by your pediatrician. Those can serve you as a baseline. You should request another ASO test so you will know if his numbers are increasing or decreasing. I can't say if you should go to either of those neurologists or find another one in maybe a different town or something. You can look on this forum for the list of doctors or go to the saving Sammy website and Beth Maloney has a list of pandas friendly doctors there as well. Whatever you decide you need to find answers. My son also presented with mild tics with his first two episodes which went away after ten days of antibiotics. The third episode was not as easy. They started immediately overnight and were much more resilient. He also had many of the signs of pandas at moderate levels that I may not have even noticed if I was not looking for them. Many of the pandas kids are diagnosed between the ages of seven and eleven. At least you found this forum and are educating yourself so whatever the diagnosis you will be prepared.

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I didn't see if you had your son treated with antibiotics for the strep, did he? I think its a wise idea to repeat the ASO and the DNase as well. I am a believer that for some of these kids, the flares start small and can build up over time before they become really heinous and unavoidable. At least you have noticed and are making connections so early in the game.

 

IF you think about it, many PANDAS kids get flares anytime their immune system is heightened. If your child is allergic to milk, it would certainly create an immunologic response and could certainly be responsible to tics.

 

As far as OCD goes, many kids do hide it for a long time before they begin to verbalize it because they know how irrational and crazy it seems. When it gets really bad, they can't help but act on compulsions and you have to notice it. But again, I think if your child does have PANDAS you have caught it early.

 

The Cunningham panel is very expensive and your child must be in an active flare to test positive. Even at that, it may not be positive. The ultimate test is really, does he get better on abx? And sometimes that means trying multiple abx before you get it right.

 

As for the neurologist, it certainly couldn't hurt to rule out more classic neurologic reasons for your child tics. When this first occurred with my 3 year old, I took her to a neurologist to rule out brain tumors or any other major thing that could have caused her symptoms. If your insurance is going to pay for it, I would go for it. It may not be the winning ticket, but any information you can get may be a useful part of the puzzle. SOme PANDAS kiddos show inflammation of the basal ganglia.

 

On the bright side, it doesnt seem that your child is suffering (at least not obviously) from anxiety oCD.

 

My child had a life threatening reaction to any dairy product, or even a cross contamination of a dairy product. He never tested positive to a blood test, skin test, or patch test. Yet every time he came in contact with dairy it was a 10 day or more hospitalization with paralysed and bleeding intestines. No doctor had ever seen anything like it. It wasn't an "allergy" as it didnt test as such. It certainly wasn't an "intolerance" because he was hospitalized and nearly died from each exposure. My point is, if he is ticcing after dairy, stop the dairy and all traces of it including caesins.

 

Best of luck on your journey!

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Thanks. We stopped all dairy fairly quickly. We did test him with some dairy to be sure it wasn't just coincidence that the ticcing stopped at the same time as dairy elimination. He doesn't have any dairy now and hasn't for a bit.

 

Ds has never been treated with antibiotics for strep. I think the last time he had antibiotics he was 3 or 4 for bronchitis or RSV. I'm noticing that after a week, this vocal tic has really faded to almost nothing today. Would that be "typical" for not having had any antibiotics? He's even upset now and over-tired (grandma let his stay up several hours late last night) and I'm not hearing it.

 

Ds still seems to be his same, happy self. He's always been a touch "sensoryish". But that has been since he was a baby. We tend to buy the same brands of pjs because he likes how those feel the best. (For what it's worth, I think they feel great too). He's always had a touch of food sensory issues. To this day, he still has trouble with some meats because of feel. But that's been him his entire life. It's not magnified or grown at all. If anything, the taking dairy out of his diet has made him much more willing to try foods and really broadened him. Activity wise, he's trying new things this summer and is open to anything that is very physical. He plays soccer and is learning rock-wall climbing and fencing this summer.

 

I think the closest PANDAS dr. is Dr. Cunningham at OU. Our dr. puts all the labs on-line so I can see/print all lab results at any time.

 

I guess where I'm torn is dh isn't really that concerned yet. I tend to research out everything to see where we might end up so I recognize it when we get there. Dh is looking at this going, oh yeah, my brother had hiccups for a year once which no meds helped. And him and his brother, even now, both have annoying tiny, tic-like coughs for about 2 months after they've been sick. They both sit there and cough at regular intervals for a while and have no clue they are doing it. No dr will comment on whether or not either of those things count as tics. I have asked. So to dh, he thinks there will probably be just annoying little tics that pop up along the way that we'll deal with. I was okay going along with that until I realized that sore throat equaled tic 4 days later.

 

Thanks. I'll try and figure out what's next after the allergy test. I want to get through that first.

 

Marissa

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Honestly it doesn't sound like PANDAS to me but like I said it might just be too early. Every kid is different and every case is unique. I would imagine that if the tics were caused by the strep that they would have continued and the strep would still be present.

 

My son had a strep infection back in Dec and was treated with a round if Zith. That's when the panic attacks, severe OCD and personality changes occurred. In May our psychiatrist thought maybe it was PANDAS. we took him for a swab and he was STILL positive. No sore throat or sickness just changes in his behaviors. When he started antibiotics it improved greatly but he still suffers from all sorts of lingering symptoms

 

I think it will be hard to prove one way or another.stbe someone who's kid just has tics and no other symptoms could chime in.

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We are new to this as well, but my ds only displays motor tics. It was pretty much an overnight presentation. He had strep in March and was treated with an antibiotic. Two days after finishing that antibiotic he had a fever and headache and was testing positive again, and was given a different antibiotic. Exactly two days after finishing that course, he started a nearly constant mouth opening tic and added a jaw-jutting tic a couple days later. He had bloodwork drawn a week after onset that showed elevated ASO and ADB, and was dramatically improved within the first 10 days of augmentin. He followed the Augmentin with a month of amoxicillin. He finished it on a Saturday. On Sunday, I was groaning because the mouth opening tic had mysteriously returned. By that night, he had a bad headache, and he tested positive for strep the next morning.

 

He has quickly gone from a kid who got strep 4-5 times a year with strong typical strep symptoms and no unusual issues, to a kid with recurring/chronic strep presenting primarily with tics and barely noticable typical strep symptoms.

 

My son's presentation was pretty clear cut, but even though your son's symptoms seem a bit less straightforward, a trial run of antibiotics might explain a lot.

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Thanks so much for the help.

 

Unfortunately, our dr. won't prescribe the antibiotics unless I do the full neural consult with ds. That's part of what I've found sooo frustrating about it. I feel like a round of antibiotics would help pick a clearer direction to go. It's also easier and less disruptive for my ds, not to mention cost-effective. But our dr. won't do that unless we first go to the neurologist and let him test ds and pronounce his opinion.

 

I guess what I'm getting from this is that PANDAS would be questionable for my ds because his tic is getting better without any use of antibiotic? We've also never had anyone in our house be diagnosed with strep or be treated for strep. Obviously ds has had it because of the titers, but it seems to be something that none of us get strong symptoms for.

 

Marissa

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"Ds has never been treated with antibiotics for strep. I think the last time he had antibiotics he was 3 or 4 for bronchitis or RSV"

 

PAnDAS or not...acute cases of strep need to be treated with antibiotics. Do you mean that he was swabbed and positive and your doc. Did not prescribe a course of abx? We know that untreated strep can lead to rheumatic fever affecting the heart, syndenhams chorea....which like PANs affects the brain causing uncontrolled movements. The rate of these diseases are still high in third world countries per an infectious dis. Doc we once saw, who thought my daughter may have a mild from of Sydenham's chorea. We were referred to a cardiologist by dr. Latimer several years ago when it became apparent that my daughters strep went misdx. For 2 months before abx treatment to rule out rheumatic fever. This is serious. You need a new primary care doc and report him to the state medical board after that if he's not prescribing abx for strep.

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our dd presented similarly. she had tics, restless leg in her case. when we stopped dairy, they went away. it took us a year to figure that one. she was also on abx for 6 months at that point.

if neuro does not believe in pandas, then she is a waste of time if you kid does have pandas.

i'd do lyme with igenx.

one caution, if your child does not have symptoms when not on dairy, why treat him? because of high titers?

I would not say that your kid does not have PANDAS. he could. it may only be a very mild case.

I would do a thorough blood test, all inflammation markers if you haven't done that one already, and start treating with supplements first.

I do agree that step needs abx though. it can end up on his heart, joints, etc.

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Just for clarification, ds has only ever been swapped for strep once and it was negative. That was back in first grade when the school nurse thought she saw something in his throat. That's the only time he's been suspected of having strep. Now, we can look at his aso titers and see that apparently he has had strep and, based on the lab values they use, he was considered higher than normal. So, no, he's never had antibiotics for strep because we're only seeing in retrospect that he had strep.

 

Likely, I'll be calling the dr. tomorrow about strep anyway for me. I have an insanely sore throat where it hurts to swallow. Last night, I was in bed by 8:30 because everything between my ears and the tops of my shoulders just ached. I figure it could be a good conversation started on that strep might be in the house and ds is ticcing very mildly.

 

Marissa

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Many PANDAS kids don't get typical obvious red sore throats when they get strep. Some have no symptoms, only behavior changes, or tics. Others might get a fever, or vomiting. My dd never had a throat swab until she was 7.5 years old. At that point her PANDAS was severe enough to require hospitalization (anorexia, bipolar symptoms). Her titers were normal. We had just learned of PANDAS and demanded a throat culture. The doc's comment was "Gee her throat doesn't look sore." Needless to say, her throat culture was positive. She also had vaginal strep (culture positive). Also her younger sister (asymptomatic) was also positive on a rapid swab (throat).

 

In hindsight, she had likely had previous PANDAS exacerbations (lower grade) which correlated with undiagnosed strep. Unfortunately, all previous illnesses (fever, vomiting, etc) were presumed viral. Nobody had ever bothered to swab her when she was sick. Your child is probably the same...doesn't get a classic sore throat with strep, so they don't swab. In the future, I would demand a throat swab with any fever/vomiting. Also, if there is an increase in tics or behavior issues, I would demand a culture as well.

 

Step 1...I would highly recommend getting everyone in the household currently swabbed for strep. Do the 72 hour culture if the rapid is neg.

 

As an aside...one problem that PANDAS parents face, is getting doctors to do a simple throat swab/trial of antibiotics. It's totally illogical, I have heard of kids having MRI's, CT's scans, spinal taps...expensive and invasive tests. Yet these same docs refuse to do with a simple throat swab. Sigh.

Edited by EAMom
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