Help- what should I do

[MayMom]

Hello -

I have spent hours/weeks researching tics TS PANDAS and stress before coming across this site. I hope someone can tell me what to do next.

 

My 12 year old dd has experienced a range of tics since about March. We called our neurologist (she also has a mild form of epilepsy) and he did not diagnose TS he instead said it was just "normal" tics that impact some ppl. Around the same time my dd was feeling very stressed and filled with worry so she asked me if she could talk to a professional. I complied and she went to see a counselor. After one visit her mood improved the tics seemed to lessen and we felt really happy. I'd like to point out something I did not at the time think was important but I do now - my dd had just gotten over a bout with the flu when all this was taking place.

 

Fast forward a couple of weeks my dd is ticking again and happens to also be dealing with a sever cold and allergies so instead if her allergy meds I give her a decongestant. My dd also plays select soccer and during this period if time her tics were so bad and had fine from a head twitch like she's constantly nodding to shrugging her shoulders and twisting her back. It was so prevalent during a game that her coach asked if she had gotten hurt. I start researching tics and realize the decongestant makes them worse so I ended that immediately. We visited the counselor and we discuss relaxation techniques. Our pediatrician isn't helpful and really just wants us to talk to the neurologist but the neurologist doesn't see her and simply prescribes meds (we are bit ready to go that route and have not filled the rx). We have tried magnesium and my dd feels like it helps but I don't know. We briefly tried tic tamer but my dd did not seem to feel

like that helped.

 

The tics still happen but seem to settle a bit then (about 2 weeks ago) my dd gets a really bad sore throat and cold. The tics get worse and seem to be ongoing throughout the day in some forms. She goes through a full serious of head neck shoulder back and arm twitches repeatedly and when she isn't she has a subtle head shake that she does. She also rolls her eyes around several times. We are on vacation so I thought things would calm down but they haven't.

 

I really don't know where to start. I think PANDAS could be to blame but who can help with that.? We have her annual checkup next week and I want the doc to check and see if she has an underlying infection. But what test is that? So I ask my neuro if he is familiar with PANDAS and get an appt with him? I know a family suffering through PANDAS and they shared the names of the docs they have seen for diagnosis. Do I start there? We are still taking the Natural Calm magnesium but nothing else for tics. My dd takes epilepsy meds and allergy meds daily but I'm considering discussing that with my docs to see if that helps.

 

Any advice you can offer would be great - I'm scared for my dd, I'm scared about 7th grade, I'm scared about sports, and I'm scared it will continue to get worse.

 

Thank you.

[LNN]

You should ask your doctor to do 1) a rapid strep test (a throat swab) 2) a throat culture (a 24-48 culture, sample taken at the same time as the rapid swab) and 3) two blood tests - a strep ASO titer test and an Anti-DNaseB titer test. If your pedi won't do this, take your DD to a walk-in clinic and request these tests. There's a beginner's overview booklet for parents who are new to Pandas, sold by this forum http://latitudes.org/store/should-you-consider-pandas-ebook/ that might be helpful as well.

 

If the other family is happy with their Pandas doc, it may be worth getting an appt. But you want a doctor who has experience and is willing to try multiple treatments. Pinned at the top of the forum under "helpful threads for Pandas" you'll find a list of doctors by state who may be helpful. Or you can post the general area where you live and ask for suggestions. It sounds like Pandas is at least worth exploring for your daughter.

[qannie47]

Blood work is all very helpful, and a must do....but please know that many Pandas children look perfectly normal on a piece of paper...ex: my son had strep for 6 weeks, verified by repeated rapid strep tests, and when ASO and Anti-Dnase B titer test was run 4 weeks later, he looked on paper as if he had never had strep! This is because some Pandas kids do not make antibodies...(part of the problem for some).

 

My point: run the test....but if they come up clean, do not stop there. I would recommend 6 weeks of abx. It seems that the real proof is often in the "way a child reacts positively (symptom reduction) to abx (eradication of infection).

[Missmom]

I agree with quinine and LLM, the blood tests and swabs are very important. Along with the titer tests our pedi also ran a general streptozyme blood test as well. It is not specific, but can detect a current strep infection. Even if these come back negative other infections and viruses and live vaccines can also trigger pandas/pans symptoms. It is very important to beg, plead, and do whatever you can to get a trial of antibiotics. Do not settle for amoxicillin as many children including mine do not improve at all because it is resistant to a lot of strains of strep. Ask for either augmentin or Zithromax at treatment dose for as long as you can get it. It can't hurt and it may give you the answers you need if your daughters symptoms stop shortly after starting the abx. Wishing you the best. We have all been where you are so please feel welcome to post whatever you need on this forum. My son started with overnight tics also in 6 th grade. He also displayed more hyperactivity than usual and OCD and anxiety also got worse. Once you have a great doctor who will work with you things will get much easier to handle. Take care.