A mystery diagnosis...AGAIN

A few months ago my oldest daughter woke up with numbness in her arms and legs.  My concern increased when this continued for weeks.  She started having increased anxiety, including panic attacks, social anxiety and sensitivity to sounds.  At first I thought that the increased anxiety was probably related to the isolation due to COVID and being stuck at home.   She started having symptoms that seemed a lot like OCD to me.  She needed a lot of reassurance and had an excessive amount of guilt.  She became worried about her weight and if she was exercising "enough" and worried if she was eating too much.  Seemingly normal things that a teenager might face but this was very unlike her.  Then suddenly, a few weeks ago things really escalated.  She started having intense pressure in her head, in fact she thought it was her ears.  We went to the ENT only to find out that her ears were fine.  The next day she woke up and couldn't swallow.  Food from breakfast got stuck in her throat.  She also had numbness from her hands to her shoulders and from her feet to her hips.  It was hard to walk, she had to really think about every step she took.  Her hands were constantly trembling, so much that she couldn't hold a pencil to write or draw.  When she told me her vision was also blurry I took her straight to the ER. 

Not surprising to me the ER completely dismissed us.  They were not even concerned about the food stuck in her throat and said they weren't really sure what was wrong but "it was probably due to stress."   They sent us home.  Three days later she had an endoscopy that showed she was getting food stuck in her throat and that her swallow was very weak.  The GI doctor we saw mentioned this was strange because usually you don't just loose swallow function overnight.   We had an endoscopy later in the weak and I was grateful that it was normal and she has no disease in her stomach that was visible. We did an MRI of her head and spine to rule out MS and cancer.  Everything came back normal, this was great news of course, but didn't explain what was going on with my daughter.

She went from being a 4.0 AP student to struggling to process information, to not being able to remember things that she's always known.  The things that have always come easy to her are now extremely difficult.   The things that she's always loved and is extremely talented at:  drawing and writing and being creative--she couldn't do at all.  She wasn't able to read because she couldn't process written information.  She needed to have the captions on the TV so that she could try to read and listen to understand movies.  Any sound especially an unexpected one, like a pan dropped on the floor or the dog barking sent her into an instant panic.  

The past seven months have been very trying for her and I.  It has been so difficult to watch her struggle.  At one point she became very sad and told me that she is worried all her friends will go to college and she will be left behind because she cannot "think" anymore.  Honestly, she has shown such resilience through all of this and she has worked so hard to keep her hopes up with all that she is going through.  I honestly cannot imagine what it would be like to loose skills that I take for granted like reading and writing.  I cannot imagine as a teenager, having to stop school (which she absolutely loves learning) because my brain would not allow me to process new information.

Just a week ago we finally sat down and spoke with the immunologist and he explained that she has PANS.  Basically her brain is on fire.   Instead of her immune system attacking a virus, it is attacking her brain.  PANS stands for Pediatric Autoimmune Neuropsychiatric Syndrome.  It is unknown what triggers PANS, but it is typically set of by metabolic issues, infections, or other inflammatory processes.  

Thankfully we have a great team of Doctors and my past experience with my other children has taught me what a huge role nutrition plays in healing the gut and body.  We have started the AIP diet, antivirals and antibiotics and are already seeing some improvements.  I hope that we have caught things early and with the proper treatment we will get our daughter to a place were she can attempt to be in school again.  I think that is the most difficult part, this is her Junior year and she was learning to drive before all this began.  

I hope that sharing our PANS story will help others identify symptoms sooner so that you can get the quickest diagnosis and support for your child.  Please reach out to me if you have any questions or need support finding a provider who can help treat your child.