Has my son had PANDAS/PANS for years?

[Nativebrit]

Hello Everyone,

Brand new to this forum and honestly believe I may finally be going in the right direction.

After 2+ years of ER visits, doctors visits, meds, meds, meds my son is in a very severe condition.

Past 2.5 years with my son Jonah have been a nightmare and nobody ever mentioned PANDAS/PANS in all that time.

For 14 years Jonah was a loving life kid, swimming, playing, beach lover until something took all this from him!

(Jonah has been non-verbal since the ages of 3 and is now 17, lives near Palm Desert, CA)

I recently purchased the book "Your Child Has Changed" and oh my goodness I have been saying that for years to death medical ears.

The significant regression in my son is so crazy obvious and yet I often feel powerless to help him.

Looking back I can recognize that Jonah did suddenly develop OCD when he couldn't walk normally anymore completely out of nowhere.

He would need to touch posts, walk backwards and forwards frequently and would freeze often at cracks however all the "experts" told me relax it's just another autistic trait.

So I did, for a while...and now 2.5 years later Jonah cannot go anywhere without serious self injury, panic attacks and massive anxiety.

Last 2 years I have ...

Worked with child Psychiatrist with over 20 years experience at one of the largest children hospital in our area prescribe a ton of SSRIs and other brain meds to no avail.

Jonah started having seizures 6 months later but only once every 3 weeks on the dot! No seizure medication has ever altered frequency.

(In fact most of the time the seizure temporary stopped the OCD behaviors and made his symptoms less severe)

2018 UCLA psych "experts" hospitalized hime for 4 weeks put him on massive amounts of Prozac and sent Jonah back to me much worse than he came in.

2019 Sutter Psychiatry in Sacramento performed ECT as his aggression during transitions was getting too severe for anyone to handle - didn't help his anxiety or OCD at all.

I feel very angry at the medical field and (annoyed at myself)  because my son is so severe and now incapable of basics tasks he could do years ago and yet a possible diagnosis exists.

I have now started working with a MAPS doctor and getting hair samples, labs tests started) but my fear is that Jonah could have had PANS for close to 3 years now.

Where do I go from here? There is a place in Irvine, CA says they diagnose PANS https://www.integrativemedicineoc.com however have left them 3 messages and no reply.

His current doctor has not even heard of PANS 😞

Jonah really needs some urgent help as his life is wasting away.... any advise would be greatly appreciated.

 

[MaryAngela]

My first thought about your situation is that PANDAS/PANS is almost always dismissed when a child is on the so-called spectrum.  My DS had sensory issues since he was an infant, but had his first major onset of PANS at age 8.  He was then diagnosed with Autism and ADHD.  His symptoms (sensitivity to odor & sound, lack of frustration tolerance, inability to focus, & OCD) turned exponentially worse overnight.  If he already had Autism, this was not the natural progression of that condition.  We also took our DS to many “experts” at a renown children’s hospital in our major city.  PANDAS/PANS was never brought up, although I clearly expressed that the behaviors were abrupt within 48 hours of dental work.  After I found out about PANDAS and directly asked the doctors, it was dismissed without running any tests.  After 3 1/2 years, we were finally able to find a rheumatologist at the other major children’s hospital in our city who was willing to give DS 30 days of antibiotics.  At this point he was completely debilitated and unable to attend school for several months.  Miraculously, 90% of his symptoms went away for 3-4 weeks.  Doctor gave him lower prophylactic dose of antibiotics for next 6 months, but he began to decline about a week after high dose was discontinued.  Rheumatologist refused to refill higher dose. Symptoms became life threatening (refusing food and water) and he ended up back at first major children’s hospital.  I was told it was a coincidence that DS went from severely mentally ill to “normal” for the time on high dose of antibiotics.  Ultimately we were told by 2 different Integrative MDs (not affiliated with children’s hospital) that DS had Autoimmune Encephalitis. He has been receiving monthly IVIG for 20 months, and fluctuates from 80-90% symptom free. 

I’m sorry I can’t recommend a doctor in your area, but did want to give you hope that your son can improve even though he was undiagnosed and untreated for so long. 

[Nativebrit]

Thank you and I appreciate the hope...hearing from others that can actually relate is priceless.

It's the same with his "epilepsy" most doctors just do not want to hear that maybe they have mis-diagnosed here.

However the main children's hospital is just like the DMV, take a number and hope you get served that same day!

 

[MaryAngela]

Especially with the seizures, they should consider encephalitis!

[Nativebrit]

Yes they should however up to this point they are set on the epilepsy diagnoses however non of the meds for epilepsy have worked.

Also he was on a dose of 8 MG daily of Lorazapan and he still has his once a month seizure.

I am now started working with a MAPS doctor and waiting to see a neurologist local to me but have no trust in traditional medicine any more.

[MaryAngela]

Maybe the MAPS doc can order the Cunningham Panel (bloodwork).  That’s how my DS got approval for IVIG.  

Also, be sure that Jonah doesn’t take Miralax.  For my DS it was the tipping point to put him in full blown encephalopathy.  I’m trying to get the word out because pediatricians prescribe it like water.  

[Nativebrit]

Thank you - plus won't go near Miralax 😀

[tj21]

So sorry to hear all this!

Have you tried https://www.amyjoysmithnp.com/ ? She just moved to a practice in Orange, CA and has worked with DS19 for about 5 yrs. to 'bring him back' to a better baseline.

[Nativebrit]

Thank you for this information - I will reach out to her