2 years ago our middle son became unwell almost overnight. It started after a few tick bites.
He was already not neurotypical. But he had healed so much over the years with interventions and was leading a “typical life.”
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.
He stopped being able to do anything for himself. 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.
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.
For whatever reason HIS immune response to that is causing seizures and organ stress.
With the help of specialists he was also diagnosed with PANS/PANDAS as a result of his immune reaction.
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 enough to 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.
He for whatever reason went 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.
$325 for a mold test
$300 for a specific stool test for him.
$300 for a current OATS test.
$1500 approx for a Rife Machine
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!!!
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!
