NEED INPUT AND LOCAL DOCTOR-PED

[WorriedDADNMOM]

OK---have posted here b4. DD6 diagnosed with tic disorder post strep, positive, albeit low, titers. Two rounds of ABX--amox and penicillin. 30 days of penicillin did wonders. Now done----still have concerns. Have been trying to remember all these issues with dd6. For about a year the emotional liability and odd have been occurring. Assumed it was school----1/2day kindergarten everyday and all day 1st grade. Now that she has had the tic disorder and positive strep the past few months has me thinking.

 

All our dds 7,6 and 5 got a croupy cough around Christmas of 2010. Also, dd5 has for the last few months, since Christmas very bad odd and emotional liability----really whacked out stuff for a 5yo or "where in the world did that come from" moments. Similar to dd6 issues. Have gotten ASO titer done on her yesterday awaiting results. Will update

 

What I am wondering is------It seems as though the emotional liability and odd may have been the 1st signs(we did not recognize) then comes the tics and ocd and other more outward signs of "somethings not right" not just the "my kid is acting like a brat" stuff.

 

HAS ANYONE ELSE EXPERIENCED THE SAME PATTERN OF EVENTS??? I am thinking this could be dd6's 2nd or 3rd strep(no outward signs) event just did not notice till eye tics. Also am thinking this was dd5's 1st strep due to dd6 positive titers-----again----waiting for titers test for her. BTW---dd5 just had well-check yesterday and ped is more open to the whole pandas thing than when I first posted about dd6 back in Jan '11------which is good, I suppose.

 

Sorry for the rambling. Looking for a pattern but just too much unknown at this point. I know I need to be doing a journal. Probably will start one now.

 

ALSO, ANYONE KNOW OF TOLEDO, OH NW OHIO, SE MICHIGAN PANDAS PED OR DOCTOR????? PLEASE ADVISE IF YOU DO. I ALSO WENT ON PANDASRESOURCENETWORK.COM AND REQUESTED PED OR DOC INFO AND THEY HAVE NOT RESPONDED.

 

THANKS FOR THE HELP!!!!!!!!

[SarahJane]

I can't give advice on local drs, but I will say the emotional labilty was the big thing with our son. Just out of the blue behavior that was off the charts. Rages, tantrums, overreactions, ODD, etc.... He did have OCD too, but it wasn't as noticeable as the emotional lability, tho' I will say that it is likely that the rages/tantrums/etc... were set off because his OCD issues were triggered somehow. I still don't have all those figured out & he keeps surprising me by telling them to me...NOW...a year after the fact. He does things in evens. He has a bunch of favorite numbers & they say "I love you" when he sees them (he imagines it...doesn't hear it). He gets surprised when he hears the word "forever." He does this exaggerated shake of his body if he hears a loud noise. Makes lists. And I'm sure there are more. In addition, he developed insomnia, sensory issues, ADHD, perfectionism, anxiety (actually ended up with an anxiety dx before PANDAS...& that was because nothing really fit & it was such a strange manifestation). He'd had strep before the behavior stuff started. Then the next exacerbation/strep gave us some mental illness symptoms/vocal tics, but when the rages came, THAT'S when I went in for a strep test...positive culture.

 

So...anyway...yes, it was the emotional lability/behavior stuff that sent me into the pediatrician's office last year over & over. That & the fact that he was getting in so much trouble when he was in public school last year (homeschool now). Sent us to the eye dr, psychologist & OT too. It was a long spring last year! We finally got a dx from Dr. K in Oct (no luck with local drs) & did IVIg. Just finished our 3 month period post-IVIg & he's doing better. Not 100% but better. No rages since before IVIg in Nov.

 

Good luck!

 

P.S. Saving Sammy Facebook page posts a list of docs too. Might try there if you're on FB. Someone else here might have dr advice too.

[butterflymom]

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Edited February 3, 2016 by tampicc

[nicklemama]

Well, unfortunately, you won't find a great PANDAS dr in Michigan, that I am aware of. Most of us seem to use out of state PANDAS dr's and our pediatricians vary in their awareness, helpfullness, etc....

 

We have a Yahoo support group

 

GreatLakesPANDASSupport. You can do a search on the Yahoo groups and find us. We are small but there is a lot of helpful information to be had. One of our members is from your area of Ohio.

 

My son's PANDAS presented as raging first. There was ocd but we didn't recognize it at first and the raging and behavioral changes in him were so startling and awful and left us wondering what in the world was going on we couldn't see other behaviors while we were trying to deal w/ this monster coming out of him.

 

Cindy

[Kayanne]

These symptoms can definitely be found in PANDAS kids. But I am hesitant to say that commonly they are the first symptoms only because there are different presentations of this disorder. I believe that ODD can be an indicator of PANDAS.

 

You might be interested in this video clip in which Dr. Schulman describes her take on "Mild, Moderate and Severe" PANDAS:

 

http://www.thedoctorsvideos.com/video/14802/PANDAS--Possible-Treatments

 

The whole collection of these clips can be found here:

 

http://www.drmdk.com/html/pandas.html

[norcalmom]

I strongly urge you to check all your kids for mycoplasma pneumoniae. The tests, unfortunately, are not very good, but there are three tests you could do - Mycoplasma IgG, IgM and PCR testing. The first two are standard tests. The last is a little specialized, but you could google it and find out more, or your doctor could find labs that do it and order it for you. ITs considered more accurate. I'd also ask for immune panel that includes strep penumoniae titers, IgG, Igm, IgA and IgG subclasses. Sounds like a lot - but it isn't. Your doc will probably add a bunch on to it if your child is there for a blood draw anyway.

 

A croupy cough is a hallmark of mycoplasma. Mycoplasma has also been shown to produce "pandas" / pitand (they react to more than just strep. My child has had that cough (it isn't croup...we know that one...but sounds like it, and is non-productive, and lasts for a long time without any other symtoms like congestion, or fever)

 

My child at age 10, presented with "sudden onset" pandas. BUT IN RETROSPECT he'd been having "phases" at least once per year - usually around NOW - since about age 6. He doesn't get strep, but we do think he had peri-anal strep that set of the "sudden onset" - which came on not overnight, but over a period of about 4-6 weeks from first noticing odd ..but "normal" behavior for a quirky 10 year old.. to violent tics, nightmares, decline is school, bedwetting, insominia...the tics is what sent us to the doctor.

 

Since then we learned about mycoplasma, and we belive he has a chronic case of it. It is very difficult to get rid of. If your child/ren do test positive for mycoplasma, please post again or PM me. A short course of antibiotics will most likely not get rid of it. I wish I had known more when my son was your children's age - maybe we could have avoided the whole thing.

 

My son also had pneumonia at age 6..coincidence?...I don't think so! Its a complication of mycoplasma pneumoniae (a different type of penumonia than classic pneumonia).

 

I encourage you to rule it out!

 

And yes - early on in the disease, the behavior happens first, and the tics come a few weeks after. AND they don't happen at the same time as the illness, but several weeks after. This is also classic for syndenham's chorea. By the third / fourth time, the symtoms will happen at the same time as the illness be it strep or virus, that is setting your child off.

[Mary M]

Hi, Mary M here, from Michigan...

Nickelmama gave you the info for our Michigan PANDAS support group.. Please sign on...we'll see if we can help, at the least, we can listen.

Mary

from Michigan

[wornoutmom]

We DO have some help here in Michigan. I sent you a PM.

[JJMom39]

This doctor is in Twinsburg, OH. This is the only dr. in Ohio I am aware of other than the one who treats my son (in the Columbus area.) This information below comes from the Saving Sammy Facebook page. If you look under the Discussions tab, you will find a list of doctors who are referred to as "PANDAS-friendly." I do not have any personal experience with her, but she might be close enough to you, or at least worth a phone call.

My son was diagnosed with PANDAS only one week ago so I don't have much experience with his new pediatrician yet, but she is at least familiar with PANDAS and has treated other PANDAS children. I could give you her info if you are interested.

 

OHIO

 

Dr. Nevada Reed, MD (neurologist)

8054 Darrow Road

Building D, Suite 5 & 6

Twinsburg, OH 44087

phone: 330-963-8600

fax: 330-963-8680

http://www.kidslinkohio.com/family/reed.shtml