Praying it's PANS and not Pathological Demand Avoidance

[Coutts75]

My 7yr old son has a button phobia, he's had it for as long as we can remember.  Last month CAMHS suggested an ASC assessment. We'd noticed some autistic 'traits' anyway, but nothing to concern us, so this was fine.

 

Since then new behaviours started to emerge, almost daily, all pointing towards PDA (Pathological Demand Avoidance). The volcano erupted. He BECAME a boy with PDA in 6 weeks. 

 

Then someone mentioned PANS, the symptoms/behaviours are almost identical but with PDA they don't 'just appear'. 

 

I don't remember my son having a strep type infection but he did have a horrible influenza bug at the end of August with high fever and fearful hallucinations.

 

On Friday I convinced our GP to prescribe some antibiotics for possible PANS (which they'd not heard of), they've reluctantly given 1 week of Penicillin. 

 

We thought we saw improvement after 24 hours. However, 48 hours in and he gets a cough and cold which I guess can throw a spanner in the works. 

 

Q1. Has anyone else assumed PDA (or similar) when it was PANS/PANDAS? 

 

Q2. Does anyone know the recommended penicillin starting dose?  He's on 5ml, 4 times a day (plus ibuprofen) and I'm wondering if this is enough. 

 

Thank you all :-) 

 

[bobh]

I am so sorry that no-one has responded to your post throughout this week.

I have never heard of PDA, and a search in this group (including the full term Pathological Demand Avoidance) comes up with only your post.  I think it would be wise to pursue the "PDA doesn't just appear" line of thinking and consider PANS/PANDAS.

Unfortunately, 1 week of one abx may not be enough, especially with the cough/cold  you reported.  How was he later in the week?  For more on abx protocol, have a look at http://www.pandasnetwork.org/understanding-pandaspans/antibiotics/, and also https://www.pandasppn.org/wp-content/uploads/PANDAS_Flow_Chart.pdf (which is actually a site to help doctors).

[Coutts75]

Thanks for your reply. The antibiotics seem to be making some improvement and we've made an appointment to see a specialist so hopefully things will continue to improve.

Thanks also for the links, it's good to see information is available - I've never studied anything so much and so quickly in such a short space of time!

[bobh]

On ‎10‎/‎28‎/‎2017 at 2:19 PM, coutts75 said:

... I've never studied anything so much and so quickly in such a short space of time!

There is so much, and some get overwhelmed by the volume of info (and who to trust).  But those pandasnetwork and pandasppn sites are quite solid, which you can see by checking out their advisory boards (all the big names in PANS/PANDAS research and experience).

Another item (if you are not too overwhelmed) is the documentary "My Kid is Not Crazy".  If you are not aware of the controversy, this will be a head spinner.  But it is also important to understand why some doctors dismiss PANDAS and PANS.

[Dancingqueenjen]

How did you get on? Our story is very similar, my son is 7 in January, had previous frustrations, desire to please, do well but all well managed and never had a tantrum at school.  He had Scarlet Fever as an infant.  3 weeks ago my happy boy got a fever for 2 days he was ill, the next day it was as if someone stole my child, angry, obsessive play, sensory issues, hitting, kicking, growling, screaming, hysterical crying, trying to run away, extreme behaviour every day at school.  We are now classed as a crisis case and being assessed for PDA or ODD, we took him to a private doc for blood tests and they mentioned PANDAS and he came back with very high ASOT.  We started antibiotics on Friday evening. 

Feeling so lost, any information greatly received.

 

 

[bobh]

2 hours ago, dancingqueenjen said:

... and they mentioned PANDAS ...

Things are changing.  A few years ago, in pretty much most countries, PANDAS would have been either not known (or, as in our case) it's existence outright denied.

If you don't get a positive strep test and someone insists that therefore it can't be PANDAS, there is also PANS - virtually the same thing, but caused by other infection (or environmental trigger).

There is still reluctance to accept the illness. Where I am, a doctor at a renowned children's hospital has said "I won't believe it is PANDAS unless there are two documented strep cases on file".  But this is not the official definition (see the pandasppn or pandasnetwork sites) - a provisional diagnosis of strep can be given even if the child was known to be exposed to strep (at family or school).