Next Step?

[texanmom]

This February my daughter (turned 8 in June) developed a vocal tic ("humf" sound). Since then it has progressed and changed from variations on that sound, coughing, throat clearing, and sniffing.

 

We've also seen a lot of OCD like behaviors--- lots of routines, must wear multiple exact bracelets on her arm everyday, must have all clocks set correctly, etc. Lots of mood swings.

 

This really intensified this spring although she has always been more explosive, temperamental, etc. She had repeated throat infections and strep from 2-4 years old. Her tonsils and adenoids were removed when she was 4 due to this. During this time she also had lots of night terrors.

 

She has always had frequent urination issues. We took her to the doctor when she was younger. Nothing really resolved but as she became older she just handles it.

 

We also did a sleep study when she was 5. She would come home from school exhausted--have a terrible meltdown, sleep until dinner, we'd wake her up, she'd eat and then sleep through the night. The sleep study came back fine. But she has always required lots of sleep.

 

She is super smart but has really been struggling with reading. She has an appointment to be screened for dyslexia in the next few weeks.

 

After the tics, our ped referred us to a pediatric neurologist in May who told us that he believes it is the beginning of Tourette's for her based on the multiple types of tics presenting and the duration already. (He acknowledged that the official diagnosis requires multiples types for 1 year but that he believes this is the direction she is headed.)

 

Yesterday, I took her to a family doctor in our area--I am not totally sure we are dealing with Tourette's here. I've been reading through the forum and read Sheila Rogers' natural treatment book. I was looking for a starting point on where to begin as far as looking into other causes of the tics. I had heard good things about this doctor being a researching, open minded type but was overall disappointed. He tended to agree with the neuro--although he suggested basic lab work and an eval with a psychologist (he seemed to be thinking perhaps anxiety disorder, stress-related).

 

It was just basic labwork but it does show high NEUTROPHILS and low LYMPHOCYTES. Should this be clueing us in to something? I honestly never really thought PANDAS because although the tics came on suddenly, the overall mood swings and behavioral issues have been come and go since her preschool years. Of course now I am thinking back to all those throat infections--could it have began back then and we are just now seeing tics?

 

I got the lab results online and the doctor hasn't called back regarding them. I am praying that he's researching and putting pieces together. But if he blows it off.. I would appreciate advice on the next step--who to see, what to request. We are in Texas.

[T_Anna]

<<She is super smart but has really been struggling with reading. She has an appointment to be screened for dyslexia in the next few weeks.>>

 

This line struck a cord. Was your DD reading well before?

 

Dr. S uses reading as part of her clinical evaluation for PANDAS (including rages, irritability, OCD, etc).

 

There are children on the forum who have had T&A and still suffered from Strep and PANDAS. Did you run titers as part of the blood work?

 

I would definitely try to find a PANDAS specialist.

 

T.Anna

[LNN]

When you have her vision assessed, make sure it includes an assessment for convergence insufficiency. Many optometrists don't test for this or don't support therapy or prism lenses to correct it. My daughter's pediatrician diagnosed her at age 4 but the optometrist they referred us to dismissed the diagnosis and instead only prescribed glasses for farsightedness and astigmatism, not the convergence insufficiency. For 2 yrs, she kept saying the glasses didn't help. When she advanced to chapter books, her reading took a huge dive - kept losing her place, not recognizing words she clearly knew, too tired to read for long even tho she's an avid reader...

We finally took her to a behavioral optometrist who prescribed different lenses and did vision therapy. Her reading is once again above grade level and her CI has improved significantly. here's a site that explains it http://www.childrensvision.com/reading.htm It is similar to dyslexia but is different and can be treated. But you need the right doctor to detect it and fix it.

 

As for the tics and Pandas connection - I think it's worth pursuing with a doctor who's friendly to the idea. At the top of the forum is a section called Helpful Threads and you'll find a list of doctors who've been helpful. I believe some members in Texas have seen Dr Rao and maybe they can give you feedback.

 

My son (Pans) had severe tics and like your daughter, was headed for a TS diagnosis. His tics appear when his body is struggling to fight an infection and can't get rid of the toxins released by dying bacteria. It's a detox problem for him. Supporting the body with supplements and addressing infections as well as vitamin/mineral deficiencies helped tremendously. He is tic-free now.

 

Always follow your gut. You may need to travel to find a supportive doctor(s) but it's been worth it for us.

[texanmom]

Thanks for the good information from you both. The vision info is also very interesting and I will look into it more.

[pr40]

symptoms you describe are also consistent with lyme and other underlying infections like myco.

may want to do western blot with Igenex to rule lyme out. myco can be ruled out through regular blood labs.

Our kids had similar symptoms and it turned out that they both have lyme probably congenital.

[texanmom]

I just started reading about lyme today. Something else I had never considered.

[nicklemama]

When explaining your daughters coming and going emotional outbursts and how they've always been there because they've been coming and going for a long time, are you aware that PANs waxes and wanes? Early on it may appear and disappear. Episodes may get longer, more frequent and worse without treatment. I'd be willing to bet PANS started in your daughter a long time before the tics.

[texanmom]

Yes, I am aware that it waxes and wanes. It is just that at first I was (wrongly) only looking at the onset of tics (which is February). There seems to be an emphasis on sudden onset--and I never considered that this may have started much earlier (several years ago) in a sudden way even though we are just now seeing the tics.

 

Thanks for clarifying that. I have two Texas doctors that I am looking at and am so ready for a doctor to listen.

Edited July 11, 2013 by texanmom