Please Help Our Son Heal from AlphaGal and PANS PANDAS.

Help us heal Oatie. PANS/PANDAS has been so challenging! Here are the symptoms and it came on seemingly overnight.

About 2 years ago our middle son became unwell almost overnight.

He was already not neurotypical. But he had healed so much over the years with interventions and was leading a "typical life."

It started after a few tick bites and not feeling good.

Then he had a huge seizure.

We were afraid we'd lose him that night.

In the following weeks he was starting to be afraid to be away from me. I had to drop my midwife training and stay home full time. Then my husband could barely leave because we were both up all night and caregiving full time.

He stopped being able to do anything for himself. He actually went from potty trained at 2 years old to being in diapers!

Then he stopped being able to sleep. Major almost overnight OCD started. Then psychotic behavior started. Counting non stop. Matching. Marching. Repeating EVERYTHING. Even all words.

Crying. PANIC ATTACKS.

Started to turn down most food. He was quickly becoming afraid of everything. Then the weightloss started. He felt sick all the time.

Eventually he started to get jaundice. That's just a bit of what was happening.

We were admitted at the hospital multiple times. I begged them to check for tick borne illnesses. Finally a year in they agreed to hear me. The specific tests were not being covered through our doctor. The hospital finally took me seriously and he was diagnosed with #AlphaGal.

A tick borne life threatening immune response. Most likely also has Lyme Disease.

For whatever reason HIS immune response to this is causing seizures and organ stress and PANS.

With the help of specialists he was also diagnosed with PANS/PANDAS as a result of his immune reaction.

PANDAS/PANS is a form of Autoimmune Encephalitis.

All medications have to be compounded to be allergen free. Most medications are not available to him because of Alpha Gal. Even seizure meds....even most everything over the counter.

Nobody knows anything about these issues thoroughly enough to really help. Especially the combination.

In the hospital I spent most my time teaching them about these things but I am limited in that I don't know how to completely to him. There is a bigger hospital 2 hours from here that has a special research department dedicated to PANS/PANDAS and is more Lyme literate. We've been trying to get referrals to there.

He for whatever reason has gone mute. We're mostly homebound.

The pressure to "figure this out" is enormous.

I just want God's Grace to heal him.

We have made it sooooooo far but I feel stuck again. I feel like we're at a crossroads. He's starting to slip backwards and that's the scariest thing ever after what we've been through.

He's gained 30 lbs back. I got him eating again. He's sleeping again.

I just want him to get fully better! We're living on band-aid solutions.

Any immune challenge lights up his symptoms again.

Even mosquito bites.

I'm struggling to keep him from going into flares. I can't get him off of ibuprofen even with his doctors help.

I miss going to sleep at night and completely relaxing.

It amazes me that so many have to experience that.

It blows my mind how many parents are dealing with chronically sick and medically complex children.

How do we all do it?!

Some of y'all seem so grounded about it. I'm in awe.

This guy is literally one of the toughest guys.

He's so sweet.

The oldest soul.

Ancient eyes full of love.

I want him to have a fun and long healthy life.

Sometimes I feel angry about how unfair this seems.

Here is what we need help with right now:

$3200 for a genetic and methylation test that should show why he's not recovering more. Why his immune system is responding the way it is.

$350 for a neuro transmitter test

$600 for 2-3 appointments with a local specialist. This is repeating.

$325 for a mold test

$300 for a specific specialty stool test for him. His blood tests indicate an infection.

$300 for a current OATS test. Very important urine test.

Plus so much more!

Isaiah 66:13 "As a mother comforts her child, so I will comfort you."

I'll share our need and want wish list below if anyone wants to donate a supplement or a STEM project to send him as he is homebound.

He doesn't watch screens and is very low on energy.

= Boredom.

Here is our list. Thank you!!!

Healing the Hive https://www.amazon.com/registries/gl/guest-view/20PY847RU9VKQ

Thank you friends! ❤️

#AlphaGal #PansPandas #Seizures #MCASawareness #Mutism #LymeDisease #MCAS

#VaccineInjury

Y'all have carried us through with helping this sweet soul to heal.

Literally!

The donations have been a life saver. I cry with gratitude.

❤️

Thank you everyone who has helped us!!!!!! There are so many of you and some have been living Angels.

He smiles again! Bless you!