I think my daughter has PANS/PANDAS

[gingermom]

Brief backstory: 

November of 2021 my (now 13, so then 10 year old) presented with the symptoms of a bladder infection. We went to urgent care and tested for infection but it came back negative. In the days/weeks following this (and seemingly out of nowhere), my daughter developed multiple crippling symptoms including:

extreme OCD behaviors - excessive hand washing (to the point of red and raw skin), counting behaviors, repetitive behaviors to prevent something from happening, etc. 

extreme food restriction - she believed everything to be poisoned and really struggled with eating for an extended period of time. 

inability to sleep - she always had a harder time falling asleep, but she developed an extreme fear of dying in her sleep and refused to go to sleep 

extreme delusions - i.e. she's been possessed by a demon and its going to drag her to in her sleep, the CIA is watching her via cameras in her bathroom, the boy from school implanted a chip in her shoulder and he's part of the mafia and they are out to get her, bugs crawled through her ears and are going to eat her brain. (there were more)

a head tic - for a while she developed a head tic, which seemed to get worse when she was stressed. 

extreme anxiety 

she seemingly lost the ability to do math - she used to be good and now can't even do basic mental math. 

her short term memory is abhorrent. 

 

this period of extreme symptoms lasted roughly 8 months and then they calmed and she started to act more normally. 

she retained the anxiety, depression, ocd, and inability to sleep, but she stopped having the tic and the delusions subsided - she was much more able to rationalize. 

 

I discovered pans during this time period but never got her diagnosed. but I truly believe she fit the criteria. 

 

Now here we are 3 years later and I think shes having a flare up. her OCD has become extreme again. and she's trapped in an obsession about having a brain tumor. she cannot overcome the delusional irrational thought, even when she has moments where she knows its delusional. she's consumed by the thought of it and the belief that she is definitely going to die. 

she is currently in therapy 2x per week. and I have an appointment with a PANS specialist at UCLA (John Whelan) but it isnt until may 20th. 

 

 

Are there tests I can have my GP run in the meantime? are there things I can give her that might help? I saw people saying ibuprofen helps, so I just gave her some as an experiment to see if it helps her delusional thoughts. I really don't want to live through another time like before. advice and support please 

[gingermom]

Update: all day yesterday, all she could think about was the "brain tumor" and dying. she had multiple bouts of tears and was unable to focus on anything else. I saw recommendations on here about ibuprofen so i gave her some last night. within like 15-20 minutes she was upstairs and we talked for probably an hour and a half about school, friends, movies, animals, etc. she was smiling and energetic and she could even mention the "tumor" without going into full blown panic and crying. she was much more rational. and she was able to go to sleep relatively quickly after taking melatonin, after a week of little to no sleep due to consumption by thoughts of dying in her sleep. 

 

does this seem indicatory? or a coincidence? im going to continue to offer her ibuprofen when she's in an extreme panic state and see how it affects her - if it continues to help, is it safe to assume she has PANS? or at a minimum, something inflammatory and medical as opposed to psychological

[Chemar]

Hi gingermom

Hopefully someone with more PANS knowledge stops by- but I just wanted to welcome you, and say that I am thankful there was that relief from the ibuprofen. fyi CVS has their own brand  200mg dye-free ibuprofen (we have always avoided food dyes)

My son dealt with Tourette along with intense OCD, and we do suspect a PANS component, but this was many years ago-but we also used a natural anti-inflammatory by NOW called Boswellia extract that has Boswellia + Curcumin. Our Integrative MD also suggested Olive Leaf Extract as a natural antibiotic, and you will find other posts about it -sometimes abbreviated OLE -

I do hope you find the info you need to help your daughter.

[Sandy50]

Hi Gingermom,

I am by no means an expert. I have just started on this journey myself. Is your pediatrician informed about PANS/PANDAS? A few years ago I ended up finding a development pediatrician to manage my son's many medications due to OCD, ADHD, anxiety, and Tourettes. It wasn't until I consulted an OT for gross motor concerns that someone finally asked if my son had been evaluated for PANS/PANDAS. His history of Lyme and encephalitis at the age of 4 (now 10) and his current presenting diagnoses were her cause for suspicion. The dev pedi started him on ibuprofen every 6-8 hours and found a pediatric rheumatologist in our area for us to collaborate with. She ordered an incredibly long list of blood work and a urine sample. The impact on my son's behavior tends to be mild so it can be tricky to tell if the anti-inflammatories are working. That being said, baby talk and OCD symptoms are decreasing.

Take care ❤️