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Bizarre pain attack


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Can someone explain to me what could be going on?

First of all, we have 1/2 the medical community saying no on Pandas and the other 1/2 saying yes, or atleast it is

a possibility. He has high ASO, tremors (shakes), startle response, fight or flight mode, clingy to parents for a 12 year old, mood swings, repressed anger from an awful Middle School (we have him now enrolled in a charter school assuming he can make it). He also has nausea 24/7, weight loss, looks pale often, tired. Nothing really showing on blood tests except high ASO.

 

Anyways, we had done many trials of trying to stop anti-biotics in the past. Everytime, it turned out to be a disaster. He would have major attacks of either weakness or pain or both.

We started low dose naltrexone about a month ago and about 7 days ago, decided to stop the anti-biotics again. He wants his stomach to feel better. Well, last night when trying to take a shower in a gentle shower head, he had

blood curling screams as supposedly the water coming out of the shower head felt like a ton of nails being pounded into his body. He cried for 15 minutes and we rapidly got him out of there. It was obviously another pain attack. Darn. Is this something others experience? Why? What do you do? We have him in counseling and the counselor disputes the hospital's conversion disorder diagnosis as does his alternative, non-conventional doctor.

If he has any obsession, it is the tape playing in his head of the mis-treatment at his old school. They had hall

monitors that screamed get to class and with the crowding, kids falling down, etc...it traumatized him for some reason. I think it is the pandas.

 

Has anyone experienced anything like this? What do you do? What do you do with school? What do you do to ease the pain? I was hoping the low dose naltrexone would help. Any advice? Does this sound familiar? thx

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I would definitely say this is Pandas, because he is obsessing about the school issues, does better on antibiotics, and is having real pain. Have you taken him to a good LLMD to be evaluated?

 

My son was very pale, with bright red cheeks. The pallor can be a sign of infection.

 

Has he been to GI doc? Strep can hide out in the gut. Also, a streptozyme titer might be able to diagnose strep if it has gone intracellular (this was our experience). Not sure if you have had a full immunologic workup, but it might help find or eliminate some causes of illness.

 

We have been to a place similar to where you are, and I feel for you.

 

Cobbie

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I agree this sounds more like PANDAS then a conversion disorder. The latter really should be a diagnosis of exclusion--and probably often is made as a result of failure of medical imagination and curiousity. His symptoms in any case don't seem to square up with conversion disorder--syptoms for that cannot be limited to pain. The school thing sounds definitely OCD-ish. My DS is classic PANDAS and one of his worst current OCD symptoms is, as you put it, the tape playing in his head of how terrible his old school was. The shower thing is interesting--obviously the water could not be causing pain but he nonethless felt it and the image of the nails being pounded in is striking. Could this have been some kind of a hallucinatory episode? Not that uncommon in PANDAS.

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No, he was awake and aware and the water wasn't overly hot, nor was it hard. I don't understand this one unless from prior episodes of it hurting, it triggered some unusual fear? There are so many moving parts that nobody

seems to know for sure what is wrong. All we have medically is high ASO titers. He was an honor roll student with

perfect attendance prior to this *NOV 11.

 

Just brutal and to be honest, nowhere to turn. The LLMD wanted 4 anti-biotics but he cannot tolerate them stomach wise.

 

Poor kid is suffering.

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The LLMD wanted 4 anti-biotics but he cannot tolerate them stomach wise.

 

Poor kid is suffering.

 

So sorry; your situation sounds brutal. It really does sound like he's physically ill, so some sort of medical treatment should have a positive impact. If he can't tolerate abx in his gut, could the LLMD order injections or IV abx, perhaps? At least that way, if the medicine has a positive impact, you'll know there's something there to continue to try and get after.

 

Try to hang in there.

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Has he been tested for Mycoplasma P? When my daughter was at her worst, she was so pale with dark circles around her eyes. She lost weight and complained if you even touched her wrong. She has absolutely no pain tolerance. I realize this is different than the extreme case you are talking about, but I would still test for Myco anyway. I agree with the LLMD recommendation highly. Sounds suspecious for a tick born illness.

 

Dedee

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pandakid11,

much of what you describe sounds like our daughter - she will be 10 tomorrow.

the main difference is she has never had elevated strep titers.

we have discovered her chronic/trigger is Mycoplasma.

at daughter's worst OMG she had an awful startle response, constant fight-or-flight which would lead to either running around shrieking behavior or curling up and shrieking behavior.

And the shower thing - I totally get it!! At her worst getting her to shower became a battle I wasn't willing to fight daily. She was receiving homebound school at the time. She would scream, yell, hide, slam doors... same with brushing her hair. Well, now that she is “better“ she says that the shower HURT HER HEAD and she could “feel“ every water droplet! All of her senses are “hyper“ really.

her mood swings at her worst would cycle rapidly.

nausea 24/7 we figured out was from augmentin so had to switch to zithromax.

paleness was truly awful! she looked so outwardly sick and miserable. had vit D checked - it was ok. checked for anemia - all looked ok except LOW ferritin, finally getting ferrous gluconate in her daily.

I attribute her paleness somehow to her faulty immune system.

She basically missed her whole 4th grade year - a super intelligent loved school girl.

we continue to peel back the layers of this awful disorder...

it can be exhausting and heartbreaking...

but you sound like an amazing mom with the power to persevere!!!

this forum is amazing and where I come for help and support!

hugs to you!

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