PANS/PANDAS? Not sure anymore...

[Lydiasmum]

Hi,

 

It's been many months since I've posted anything on here. That is good. We have come a long way in 4 years, but I am wondering what we are left with.

 

In brief, at age 4 my DD woke up one morning with sudden onset 'tourettes'. It was debilitating and I managed to get her ped. on board to prescribe abx. She has been on prophylaxis dose ever since. Now he wants to wean her off and I am scared! We've had no tics for 3 years, just ups and downs of increased anxiety, sensory issues and some OCD (intrusive thoughts). Everything manageable.

 

She scored 6 on the ADOS (ASD screening) and you need to score 7+ to be diagnosed with ASD. So borderline.

 

School is supportive and she can still tap in to extra support if needed but she has managed quite well in Year 3 without much 1:1 intervention.

 

What we have is definitely Aspergers/ASD traits, lack of eye contact, very literal, perfectionist, frustration and emotional outbursts. As she is maturing, a lot of other traits are disappearing (e.g. restlessness, lack of concentration). She does, however, have speech disfluency which waxes and wanes. She stutters and sometimes it can be quite significant. She is currently taking quarter dose of erythromycin (decreased from half dose two months ago). The plan is to have her off it completely by October. She has managed 100% attendance at school ever since the abx, despite lots of strep, hand foot and mouth going around the classrooms.

 

Due to her lack of oxygen at birth and many complications at the beginning, I do wonder if this is 'how she is wired' and that the abx are purely 'placebo' but she definitely had textbook PANDAS episodes at ages 4-5.

 

I am worried weaning off will cause a backslide. I don't know what to do. Any experiences similar/advice would be appreciated.