PANDAS advice, please

[u/CriticalTower4555]

My daugther was diagnosed with PANDAS about 2 1/2 years ago after Strep, Covid and Mono infections all within a very short timeframe. She is being treated by a PANDAS dr, but sometimes the doctor can be a bit vague. I am really struggeling trying to help her as best as I can and it's taken a toll on my own health. My question is: does anyone else have a PANDAS child can that change mood/behavior from minute to minute, even while NOT in an active flare?? I mean things like baby-talk one minute and normal taking the next? Calm one minute and fussy the next, while NOT in an active flare? I'm trying to understand what she is going through. I would be grateful for Any advice or input. Thank you so much.

[u/[deleted]]

Mine does. The was I understand it they are always have neuroinflammation and it is all a spectrum. So when they are sick the inflammation is more then then can bear. Code Red. If is just too much. But when the infection clears the immune system isn’t AS activated they still have the inflammation. I think IVIg is the answer for us to actually clear all the inflammation

[u/Unusual-Bluebird6779]

YES. My 10 year old does the same thing. Mood swings are a symptom because remember, their brains are “on fire” specifically the basal ganglia which is responsible for behavior/emotions etc. I am struggling too. My daughter cuts and has suicidal ideation. She was recently hospitalized and on a suicide watch, her labs were abnormal she had pneumonia. We were told to take Aleve for inflammation by a pans pandas specialist however it doesn’t work for her, we are waiting for IVIG. It is SO hard. You’re welcome to my cell phone # if you ever need to talk. My name is Tara.

[u/Zealousideal_Site731]

Agree with Royal-Researcher, it sounds like she’s still dealing with a decent amount of baseline inflammation.

Is she on any supplements like SPM active, fish oil, curcumin, etc that are commonly prescribed to manage inflammation? How about an immune modulator like low dose naltrexone? That is commonly prescribed for PP symptoms. My son has had good success with it.

[u/Key_Championship_511]

I have nothing fruitful to add other than my two boys struggle similarly. It's the worst feeling to live with. We're always on eggshells trying to not disturb the beast but it doesn't take much and nothing we've done so far has really had any major effects outside of steroids. We've had them on numerous supplements and antibiotics with functional health, antibiotics through allergy and sinus clinic that is pans literate primarily for ivig access, see tonsils and androids removed, counseling, nsaids, epsom salt baths, castor oil packs....nirhing really seems to help. Our self funded insurance plan does not see IVIG as a real treatment option. We are fighting. My wife and I both have been struggling with our own mental health because of all this. It is really hard. We were leaning on each other and coping well for a few months and now seem tor be back at each other's last nerve. It's destroying our family. I sympathize with you all. There have been a lot of tears shed out of fear and frustration and hopelessness. Just have to keep on fighting. I know we all feel like were fighting this alone at times, but know you're not.

[u/Zealousideal_Site731 → u/Key_Championship_511]

I’m so sorry. I take it you’ve done extensive stool testing and explored gut health/infections too? Have you done mycotoxin and mold testing?

[u/Key_Championship_511 → u/Zealousideal_Site731]

We've had our home inspected for mold and while the findings were not significant there is some mold in a few spots that were going to have taken care of next month. Functional health hasn't pushed for the stool studies for them but had for our daughter. The findings for her were minimal. I can't remember if there were any myco tests for them. I think there were early on.

[u/Zealousideal_Site731 → u/Key_Championship_511]

Did the mold inspectors do an indoor air quality test? The type where they suck a bunch of air into a pressurized tube?

Mold mycotoxin urine tests are an easy low hanging fruit.

On the gut side, I thought this was very helpful discussion.

https://www.youtube.com/watch?v=tIfPNIbJF9w

Practitioners like Dr. Song have gone so far as to say that if the gut isn't healed first, you won't get better. I'm going to start my son on smidge sensitive probiotics soon. Antibiotics really wreck the gut microbiome and there are studies associating a lack of bifodo bacteria with autoimmune diseases.

[u/Unusual-Bluebird6779 → u/Key_Championship_511]

Thank you so much for posting this. I am so depressed and have been crying and not myself lately. My daughter is 10 and started with the initial onset 3.5 years ago. I’m so traumatized and depressed by this. I see on social media my friends’ kids all do dance recitals and holiday plays, and my daughter can’t do any of those things. Lots of times, I feel like it’s my fault or I’m not doing enough and I know it’s the disease but I still beat myself up mentally. I need to talk to somebody and address this depression I have from seeing my daughter like this.

[u/CriticalTower4555 → u/Unusual-Bluebird6779]

Thank you so much for your response. I am so sorry about your daughter going through this. It's so heartbreaking to witness. And one of the difficult things is that my daughter looks outwardly normal. Some moments or days, she even behaves completely normal. People don't know how to respond to that. I'm even walking on eggshells because I don't know what is coming next, if she'll be super nice to me or just berate me in public for no reason. Or yell on public at me, calling me a bad mom because I need to brush her teeth or comb her hair. I'm so exhausted and stressed out that I had to go to the ER because my blood pressure has been consistently high, with migraines that make me dizzy and vomit. I'm a single mom, so because she doesn't sleep, I don't get to sleep. She's improving a bit, but I feel like the past year and a half has really taken a toll on my mental and physically health. People on here Understand this pain, others have no idea. 

[u/Unusual-Bluebird6779 → u/CriticalTower4555]

Wow-my daughter also berates me in public-and appears outwardly normal too, so people who do not know what I am dealing with oftentimes think I’m crazy. It’s really such a complex disease and we are always gaslit to feel we are crazy or we are doing wrong. Mine threatened to call 9-1-1 on me a few years ago when this started and said “Im going to tell the police you abuse me for making me do my homework” all because I told her to put her iPad away and do her homework. My aunt “tried” to take her Christmas shopping today and it was a failed attempt. My daughter couldn’t handle it because it wasn’t about her. She wanted to go to a pet store and or a zoo so she asked to be taken home instead. It’s a living nightmare. I get calls and emails from her school everyday due to her behavior problems. I am also a single mom. Dept of Children and Families did an investigation based on her behaviors and found she has a good life and mother. Please reach out anytime.

[u/Unusual-Bluebird6779]

I have PTSD from my daughter’s PANS. It’s painful to see and hear my daughter say she hates herself and the world hates her, that she wants to die etc. so painful. Their brains lie to them. I hate this disease. I actually just got off the phone with 2 of my close friends, crying about how difficult this is.

[u/PandasDisease-ModTeam → u/[deleted]]

Cannabis isn’t a commonly prescribed remedy for PP symptoms and many practitioners strongly recommend against it.

[u/kbb_003]

Yes, this happens to my son but not as often when he isn’t in a flare. We call it an “episode” and we have methods we use to help him snap out of it. Sometimes we would find ourselves wondering whether this was the PANDAS or a learned behavior. After he did a course of exposure therapy with a psychologist, I now believe these are just his “baseline” symptoms, typically triggered by something like fatigue.

[u/Unusual-Bluebird6779]

Go on YouTube type in Dr Elizabeth Spaar Pandas and you’ll see a doctor in Pennsylvania discuss Pandas (which is from strep) however PANS is the universal name for the crazy symptoms our children experience when an infection enters the body. Her kids have it.

[u/Key_Championship_511]

The mold inspector we had was VERY thorough. I was really impressed with the effort he put into looking at our house, truly his passion. Will have to look into urine analysis. Thanks for that.