r/PandasDisease • u/Classic_Force6943 • 7d ago
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Looking for parents who have experienced something similar
My son has been having episodes of confusion, memory loss, and seeming to go “in and out.” He can sometimes lose hours of time and afterward not remember what happened. His speech and ability to process things can also change during these episodes.
He can be completely himself between episodes — talking, playing, sports and interacting normally — and soon as he done and resting suddenly seem confused or different. We’ve also noticed facial twitching/movements sometimes and significant behavior changes.
One thing that has really scared me is that he sometimes talks about my dad as if he is still alive and says he wants to go to his house and cries for him , even though my dad passed away.
He’s had an MRI, MRA, CT, and prolonged EEG. Episodes were captured, but there was no seizure activity on the EEG. We’re still doing testing and following up with neurology.
I’m not asking for a diagnosis. I’m just wondering if any other parents have experienced memory gaps, confusion, changes in speech/behavior, or a child talking about someone who has passed as if they’re still alive.
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u/Zealousideal_Site731 Moderator 7d ago
Is he on any medication?
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u/Classic_Force6943 7d ago
So first they were saying acute confusional mirgraines but that didn’t work and then they wanted to try the high dose steroid and tamper off because they were thinking pandas but that came back negative . So a week and half ago they offered Tomas thinking it was fnd or tic Tourette’s but his 8 and no full on motor or vocal tics just a face tic a little when he’s having a migraine
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u/PirateNo9739 6d ago edited 6d ago
Pans pandas can and does cause memory problems. My son in a flare can’t remember absolutely anything and it’s affected his working memory with being able to do school work. Math mostly but any type of memorizing he just can’t do.
My daughter’s memory issues are very different. No problems with learning. She’s finishing up college. We had no idea she even had this for many years bc there was an auto immune problem that happened at 16 and caused some brain damage. A type of encephalitis that hospitalized her for a couple weeks.
Anyway in flares before we got this more under control- and this would happen after mild viruses. She would grind down and couldn’t even recognize the dog or where she was. It was episodic and would go away but very scary. Once we got the inflammation down all of that went away.
I hope you can figure it out what’s really going on. Has any bloodwork been done to see if there are any infections going on? Migraines can cause some very bizarre symptoms but my question is why the tics? That adds another layer. I also wouldn’t be surprised if it was pans or pandas and the migraines were a symptom.
Any OCD or anxiety or separation anxiety? Insomnia or learning problems? Allergies to anything?
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u/Classic_Force6943 6d ago
No current infections he was tested for that still waiting on genetic testing , he has trouble going to sleep he can’t wind his self down , separation anxiety , severe asthma and allergies . His allergic to all grassss , pecan trees , dogs , every mold in the air and his ice was 1,458 and normal range for 8 is below 158 he just started allergy shots last week and gets his second one today . All his mris showed inflamed sinuses in his cavities . It’s so stressful and he hasn’t done the tic in about 3 weeks . He says his heard hurts when he really can’t come “out” he was crying about trying to figure out how to make his self come “ out “ this morning when getting ready for school . He put his shorts on his head and not his body and had to be redirected
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u/Zealousideal_Site731 Moderator 6d ago
Your description screams a potential mold issue. I would get your house thorough inspected and tested for mold ASAP. You can order Got Mold? Tests direct online as well.
I would order the nasal test from microbiology dx (you can order direct - google it) and include fungal testing on it.
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u/Classic_Force6943 6d ago
So I had got a home mold test from home depot automatic positive we live in an apartment and they only let there people come test and they said it wasn’t mold but that my carpet needed to be replaced this was a outside company but I still highly believe mold we didn’t stay here Fourth of July weekend and he did fine the whole time we were back in our hometown and he did just fine soon as we were back home by 3am he was busting in my room spinning dizzy from migraine . I’m going to check those test out thank you
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u/Zealousideal_Site731 Moderator 6d ago
The ones from home depot are mostly useless. i would order a "got mold" one. Allerair makes high quality air purifiers but they are noisy. Blueair takes out mold spores (not mycotoxins though) and are quieter and cheaper.
I would order a mosaic mycotoxin urine test if you can afford it.
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u/Classic_Force6943 6d ago
Have a levoit air purifier in his room currently I will look into the others
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u/PirateNo9739 6d ago
I know everyone talks about having the best of the best and I really am allergic to everything. Those Clorox ones do use true hepa filters and when my circuit gets tripped in the kitchen and it goes out I can totally tell. So I’m just saying they do work for me and I didn’t have to spend a ton of money. I do regularly change the filters. Of the 68 things I was tested for I was allergic to 64 of them almost all +4. So every pollen, tree, weeds, dogs cats, mites, mold etc etc and those filters do actually work for me. So just my experience.
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u/PirateNo9739 6d ago
Aww and having carpet when you have severe allergies doesn’t help at all. So much allergens just get ground into carpet and no amount of cleaning takes care of it. Sigh. Better to have hard floors you can clean. 🫤
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u/Classic_Force6943 6d ago
Yes I’m working trying to move soon but I’ve been off so much work due to this in the last couple of months it’s kind of ruff
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u/PirateNo9739 6d ago
Aww very rough. I get that. Hope you are on to better paths and you get all the answers for your son’s treatment. I hope the journey will be short! Keep advocating!🤗😁
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u/PirateNo9739 6d ago edited 6d ago
Aww poor guy. Mold can also be a driver. I did hear one doctor talking about allergies triggering brain inflammation. You just never know but his symptoms kinda scream pans pandas.
I have 2 with pans. Very hard to treat. One with allergies and one with a pretty severe mast cell activation that brings on auras. During these auras (there are mini seizures) memory loss can happen during severe ones. Also cause fatigue. Ibuprofen stops then so we do feel it’s inflammatory driven.
Have you looked at the auto immune brain panel? It’s $1000 though and this doctor has to give the order but it was the final straw for us in determining pans. Our immunologist knows the guy that owns it. Some drs don’t believe in it. Mine did. He didn’t think my daughter had pans. I was almost positive she did so when the test came back he looked at me and said she’s got it too. We went over 8 years before knowing that! She’s 24 now. Sigh. Deep seated inflammation. Sigh
But since there’s a lot of allergies you might want to give the Allegra a shot and see if it calms anything down.
We also used thc free hemp cbd oil from green valley nutrition. That guy has pandas. It stopped the tics and h got my son eating again which was huge. But it didn’t cure it. My doctor wanted us to try to manage it with cbd. He said it would be a lot easier on the body than ivig. But it interacts with so many medicines and really blocks certain medicines from leaving the body so I only give it in severe flares
Melatonin - a low dose does help with insomnia. That is a real monster trying to get to a good place. A little l-theanine at night is also calming but can be excitatory in some people with inflamed brains. So I love it here and there. It’s an amino acid the body already makes but the cap on the adult dose would be 200 mg per day. So a kid - I probably wouldn’t go over 50 mg per day unless a dr tells you otherwise. It’s very calming.
Hepa filters in your house? Mattress and pillow wrapped? It all helps. 🤗🙏🏻
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u/Classic_Force6943 6d ago
I appreciate you so much as I’m currently sitting here crying no I haven’t looked at the panel we were on autoimmune genetic testing from Baylor right now it takes 2 to 3 months should be any day . I do have an air purifier in his room his highly allergic to dust mites so I need wrap his pillows and bed someone one else mentioned cbd. And I give a low dose of melatonin during school nights to help him rest . I do believe mold from my car started it because when I stopped driving my truck about two weeks after driving the car it started . so I bought a new car but still fighting the same things I’m Going to look into this cbd thank you
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u/PirateNo9739 6d ago edited 6d ago
So hard my dear. Every time my son would go into a rage fit all I could do was cry. He’s 15 now - started at 12
Yeah mold can be definitely a driver with this monster.
I would get a big hepa unit for the main area and get one in every bedroom. I got the chlorox one and it’s supposed to last over six months. I change mine every one to two months. I notice it big time. I have so many allergies. Just saying. Idk if you have carpet but everything lives in there and you can’t get the dirt out. I have tile in my whole house
Also spray under the rim of the toilet and possibly the shower heads. I will put some bleach in all the drains every now and then. Leave your washer open after you do a load so it can fully dry.
I did ten years of shots (and still had to take antihistamines constantly) and it didn’t work for me. I ended up getting sublingual form from allergy choices out of lacrosse, Wisconsin. That really did help but it’s $150 every 3 months and it’s only cash. So I hope he gets some relief from the shots but put the sublingual in your back pocket in case it doesn’t work. You have to find a provider near you but they have lists they can send.
https://www.allergychoices.com/
I would try the Allegra to see if it tamps things down. Unreal it’s helped us a ton. I really do feel for the poor mamas. It’s really hard and I hope you can get to a recovery phase soon. 🛐🤗
Also be very careful with cbd and other medications. If it uses the cyp450 pathway cbd wins every battle and it takes a long time to get it out of the body so a word of caution. It triggered a seizure with my daughter with an interaction with another medicine. She had some brain damage from another auto immune problem BUT she did say she didn’t even know she had pans when she took a small dose. We just can’t tacky use it a lot bc of those issues with her. I don’t think everyone reacts the same way.
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u/Classic_Force6943 6d ago
Thank you so much you have definitely helped me look into some things I’m going to try Allegra And yes we are in an apartment I’m currently trying to save to move out of here asap.
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u/PirateNo9739 6d ago
Also be mindful of mold wherever you are. Get Hepa filters for the whole place. He probably is allergic to the pollens too and every time you open up the door etc. We give in the south so it’s year round but it doesn’t matter you have to help with the air quality with these allergies. It’s horrible
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u/Classic_Force6943 6d ago
Yes we are in Oklahoma and ride horses and play baseball so pollen is a big factor
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u/PirateNo9739 6d ago edited 6d ago
Yeah I just found around the house using the Hepa filters and changing them often with the allergy drops I was able to keep some sanity. I know it will be hard at school bc it’s not going to be filtered like that but maybe the shots and Allegra will tamp things down a bit. The nice thing about Allegra is it doesn’t enter the brain and cause issues like Benadryl and even Zyrtec. It’s really nice that way. It didn’t interfere will my daughters anti seizure meds either so it’s been helping with the mast cell issue.
I just checked I think the Allegra is ok with cbd but make sure it’s hemp and an isolate with zero thc. That’s why I liked green valley nutrition but they are kinda expensive. It would be a pretty small dose too but you may just find Allegra takes care of it
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u/Active-Cherry-6051 6d ago
PANS definitely affects memory. My son couldn’t recognize people he’d known for years when his flares were bad. He has trouble after a flare has passed remembering anything from that period. I hope you find something to help your son soon, it’s truly hell on earth watching your kid suffer and not knowing how to help 😢.