Just diagnosed TS - questions/help

[Katie]

My 9 year old daughter was just diagnosed with mild Tourettes. Currently the tics she is having is an eye blinking and throat tic. I posted for some help/answers, etc on the TC/OCD board and was told to come here for more answers. It seems that TS/OCD can be linked to strep throat. When my daughter was 5 she had her tonsils and adenoids removed because of chronic strep throat occurences. These occurences probably were over a period of 6 months to a year, some severe, some mild. What is the link between the two? What about strep throat can cause TS/OCD? Any help would be greatly appreciated.

 

Katie

[Kiera]

Katie, you could start @ www.pandasnetwork.org to get an overview of pandas and how the mechanism of this disorder works, then repost back here with your daughter's symptoms (a brief synopsis) and people can chime in. In a nutshell, it's usually (but not always) a sudden outburst of symptoms - tics/ocd/sensory/rages/separation anxiety/urinary frequency (to name but a few) following a strep throat or other infection caused by an autoimmune reaction in the body. You can have any combination of the above, don't have to have them all. Might need to do some investigative testing to see if you can find a trigger.

[patric]

Hi Katie,

My son was misdiagnosed with ts when he really has pandas. I would get a second opinion to be sure it is ts. Pandas is brought on by strep and can cause tics, OCD, and other symptoms. Keep reading this forum to find out more.

Best of luck

[Katie]

She is 9 now. Her strep throat occurences were when she was around 5ish. She would get strep, we would treat it with antibiotics and sometimes a week later she would have strep again. Some of her occurences were mild, fever and sore throat, and some of the occurences were pretty bad with fever, sore throat, rash, etc. I dont recall exactly the number of times she had strep but it was probably in the range of 5-10 before it was determined to have her tonsils out. Since then there have been no occurences of strep. Her tics began probably around the age of 6-7 along with her OCD and anxiety. I never looked more into it until recently when her tics became eye tics and a throat tic. Thinking something was wrong with her eyes I took her to see an eye doctor. There I learned her vision was perfectly fine. I then started researching eye tics and that led me to the neurologist just this week. How do you get tested for PANDAS? We live in Georgia, where do I find such?

[WorriedDADNMOM]

Katie, by chance was your abx for you amoxicillin???? Both(one suspect and one for sure) my dd's had poor eradication of strep with amoxicillin. I think this is it in a nutshell coupled with other co-infections---mycoplasma for one that is common.

 

Also, I would echo the others about pandasnetwork.org OR pandasresourcenetwork.com-------just google pandas and strep. There is a ton of info when you start looking.

 

Don't panic but be very proactive. I would get to a DAN Ped, Integrative Ped or other Pandas literate doctor. The Facebook Saving Sammy website, this website and others have a list of docs in various states and locals that can help.

 

I hope this helps. Private message us if you need any other help or ideas. There are many people on here that want to help. Yes keep reading. Go back in history (old posts) since there are many issues at hand. Start with the basics, try to understand then you can learn how you can help your dd get well.

[peglem]

I just wanted to add that many times PANDAS kids will have strep w/o typical symptoms (normal immune response). If you see a flare in tics (or negative behaviors) you may want to check for strep at that time. My daughter had typical immune response to strep at an early age, and chronic strep problems. Sometime something changed- now her only symptoms are behavioral- and she continued w/ chronic strep after T&A. So, don't assume your child no longer has strep just because there is no sore, inflamed throat.

[Katie]

Thank you guys so much. I'm off to research!

[minimaxwell]

We met with Dr. Kovasevic today http://webpediatrics.com/practice.html

he believes almost all TS is actually PANDAS. I would get your daughter on abx ASAP,IMHO.

 

So sorry you are going thru this. This site has helped us tremendously. Please keep us updated.-Tiffani

[Fixit]

We met with Dr. Kovasevic today http://webpediatrics.com/practice.html

he believes almost all TS is actually PANDAS. I would get your daughter on abx ASAP,IMHO.

 

So sorry you are going thru this. This site has helped us tremendously. Please keep us updated.-Tiffani

 

I agree and will go with ALL.

And I don't get hung up on "PANDAS"...think immune problem.

There are other DR's who believe this, but refrain from telling everyone, you know...politics!

[3boysmom]

Your ds may have/ had strep that you were unaware of even after T & A removal. Strep can hide in other areas as in the sinuses. Also, adnoids grow back. Our middle son never had a soar throat or fever but when we had him swabbed for strep as per the PANDAS doctor (to make sure strep was away from the PANDAS son) he tested positive with no illness signs at all! Dr. L had us test all 3 boys....now all are treated for PANDAS. Titers for that middle child were 1920! Dr. B said the strep was in his sinuses and after 1 month of steroids, mucinex, and antibiotics-(will stay on antibiotics) the sinus problem he lived with daily for years, was finally gone. If the strep issues were a long time ago, the titers may no longer be high. Best of luck and prayers.

Edited March 15, 2012 by 3boysmom