Where we are at

[Lydiasmum]

Thankfully I have not had to put a post of my own on here for a while. DD7 is being treated as PANDAS (i.e. she has been on prophylaxis for over 2 years now, with good results). She will still have minor stuff that waxes and wanes with viruses and bugs, but on the whole nothing like the beginning of our journey. My reason for writing is to find out from others the situation with regards to speech problems and anxiety as those are our two main issues. Can anyone else relate? DD always is and always has been anxious, particularly separation anxiety, despite this we usually get by and she is managing in school - but on occasions the anxiety will ramp up for a week or two. The other strange symptom that seems to go in 8 week cycles is a form of stuttering. Suddenly her usual fluent speech takes a hit and she will have regular blocks. Hard to describe as not the usual sound repetitions, more like she momentarily loses the ability to get words out and there's silence. You think she's given up talking but you can see the strain in her face. I wonder if this will ever disappear. There never seems to be an obvious cause and I keep a diary. I am keeping treatment simple as she is functioning very well and has been for 18 months. She takes a daily dose of erythromycin and a good quality multi-vit. I keep her diet as clean as possible and she is in a good routine with meals and sleep.

 

If I'm honest I can't shake my PTSD and still dread the full-on Tourette-like symptoms coming back, particularly when she has a bad time speaking properly.

[MomWithOCDSon]

Lydiasmum --

 

We did experience that stuttering sort of speech pattern when DS was in the healing phase; very strange for us, as well, as he otherwise tended to be extremely articulate and well-spoken. But during one of these "spells," he would repeat whole words, repeat whole phrases or, like your DD, just stop while searching for the word he needed for what seemed like forever. He, too, has always tended toward the anxious and appreciates routine, advance notification of upcoming changes to his routine, takes a while to settle well into a new setting or situation, etc. I think this is part of who he is naturally, but when he was ill, it was definitely exaggerated.

 

All I can offer in the end is that, in our case, the speech pattern issues did slowly fade away, for the most part. Even now, when he gets especially worked up, he can lose his train of thought with regard to what he's saying, but it is much more rare and isolated, rather than a continuing pattern. I'm not sure what's behind it, but I attributed it to the general executive functioning problems he encountered for a while during his illness.

 

I can definitely relate to the PTSD . . . DS is in college and I STILL experience it! But you're wise and vigilant, and I don't think you need to take the speech issues as a sign of full-bore return of tics, necessarily. My DS had very few "tics" . . . his PANDAS was predominantly rooted in OCD . . . but the speech thing and a strange leg-dragging tic, along with a few other verbal things (like clicking his tongue), were evident in the depths of things. They've all faded to near non-existent over time, only to pop up in a limited quantity and duration if/when he gets heavily stressed.

 

All the best to you!

[qannie47]

I recall Sheila Rogers posting something about a new patch? that can help stuttering? The company will send you a trial set of free ones to try.....I believe it was posted about 6 wks ago...Glad to hear the good news!!!

Edited October 13, 2015 by qannie47