I wish I could get those years back. But I can’t.
My son is already almost 10. So much of his childhood has been spent struggling and I refuse to let what’s left of it be spent in misery.
He’s going to be healed. He’s going to be happy. And he’s going to have the freedom to just be himself.
And if our story helps another family find answers sooner, then sharing it is worth every bit of vulnerability. 🤍
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beyond the labels | autism | adhd | ocd | pans | pandas | awareness | root cause healing | neurodivergent motherhood | medically complex | lyme | bartonella
6 days ago_____summerrose
I’m curious if you went the antibiotic route. My daughter had a tick bite and we still need these tests. Hard to get ordered
9 days agomonamarie129
LDN was very helpful. It lowers inflammation in the brain. I stopped it to switched to all herbal anti-inflammatories, but I wouldn't rule it out for trying again in the future if needed. You can go to LDN Research Trust and find studies and drs to prescribe it. This will sound odd to many, but we're also looking into deliverance. Many illnesses are spiritual warfare. In my opinion PANDAS is straight from hell, it absolutely destroys every life it touches. Only Jesus Christ can truly heal this one. Instead of constantly saying my child has this diagnosis, speak healing over them. Everytime we say they have xyz, we put word curses on them. I'm not saying to not help/treat them, but stop speaking sickness over them. Speak Bible verses like. "And through his stripes we are healed." Anoint them daily with oil. Check out videos by Madison Yount, although she isn't taking new clients, she has alot of free info on her site and tons of videos on YT. And to the people who can't afford Bartonella testing, a dr we used told me most bart testing gives false negatives unless you spend the $2500. She said you can diagnose by symptoms and spend the money on treatment vs testing everything. I do however understand that finding a good dr is almost impossible, we've seen 15 in the last 5 years. God bless everyone, I will include your kids and you in our prayers.
9 days agowholehealth_studio
He’s so lucky to have you 🥹 I get seeing your child struggle and feeling alone in it—you knew before the world caught up. My 3 year old daughter has PANS/CIRS from toxic mold —in our healing journey too 🩷🩷
10 days agostarbeams87
Lyme Disease is almost always present with Bartonella. Have him tested through INGENEX labs, as well, for a full Lyme disease and co-infections panel. Rifampin and Doxycycline are the best protocols. Get an LLMD physician who specializes in vector born illnesses.
10 days agoiamkellyleanne
I’m so glad you didn’t give up. And I hope someday we can come visit and our boys can play together.🥹
10 days agocharleenhabymaxwell
Don’t give up finding an LLMD to treat the tickborne infections. Go to ILADS.org and find a Lyme Literate MD. If you were on the other space coast I’d have sold pedi recommendations but I have a feeling you’re in FL. Try Dr Alyin Ozdemir in Jacksonville. She treats kids.
10 days agobiancaweib
If a neurotypical child starts with sudden ocd and other abnormal behaviour then he may be investigated but when an autistic child shows the same symptoms they are just autistic, it’s infuriating…
11 days agosugygreenlee
We’ve been there. We are there. My son is recently 18 and has denied more treatment including prescriptions (we’ve done tons of functional medicine). We are begging him to take the Vibrant tickborne panel. We have the test, he just hasn’t agreed to it. He’s at a residential place due to severe OCD that leads to aggression and rage. Are you apart of the PANS/PANDAS parent group on FB (over 36k members)? Thats how I know he needs to be treated for Bartonella. I just know it. God help you and your son.
11 days agostayingaware2024
Oof, this one made me cry! I felt every word that you wrote. My daughter’s childhood was ripped from her at age seven in 2018, when we moved into a toxic moldy home. She attempted suicide in 2024, at the age of 12, because she couldn’t take her symptoms anymore. Allopathic doctors were more than happy to just slap psych diagnoses on her, and before that, Functional Neurological Disorder and ADHD. Her most recent diagnosis is autism (which I always say she has autistic “symptoms”, and I know that angers some people, but that is exactly what is going on. After I found out what PANS was in 2024, I knew that was what she has. She was dxed with PANS at the end of 2024 and we threw away all of our possessions, sold our home at a loss and moved out in March 2025. She suffered that many years with no answers and no relief. We honestly thought once we moved that she would get significantly better. No such luck. 😢We are on our sixth PANS specialist and the needle finally has moved…very slowly. We have seen two “top” PANS docs in the country and they even gave up on our case. Our current doctor is a ILADS doctor and also deals with CIRS. She is now on a very low dose of Azithromycin for the Bartonella (and Ivermectin for Lyme). Trying my best to not completely just give up and say this is just who she will be for the rest of her life, but like every mother before me, I can’t do that. Watching your reel helps me feel not so alone in this awful battle, thank you. 💔
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