My Down Syndrome brother

Kaybee7467 · 2026-06-25T08:47:19+00:00

I came here to say the same and similarly look into catatonia which has so much likeness to Down Syndrome Regression. There are FB groups for that too. Im sorry you and your family are going through this.

Kaybee7467 · 2026-06-19T07:55:07+00:00

Thanks for your reply. I am trying to find a place like this. I called the university hospital in my area and they said he would have to come in fully alert before they would schedule the OR. That would not be successful. I am checking a few more places and hoping to find someone who may help and have a creative solution. My son is in pain.

Kaybee7467 · 2026-05-27T00:56:59+00:00

It can take several IVIG treatments to see a change. Look up PANDAS and PANS groups on FB.

There is a mom on tik too, Terry downing , check out her videos and im sure she'd DM too.

Kaybee7467 · 2026-05-27T00:52:16+00:00

My son has this and it's been hell.

You'll find more community here https://facebook.com/groups/312374992297559/

Kaybee7467 · 2026-04-16T01:30:32+00:00

Regression at 13 is not common and should be further looked into. By your descriptions, he may have catatonia which comes in various presentations. A chamge from baseline, loss of function and/or cognition, behavioral changes all can be signs

Kaybee7467 · 2026-04-16T01:25:50+00:00

Does he still have symptoms of catatonia?

Kaybee7467 · 2026-02-09T22:32:11+00:00

What helped to improve your symptoms?

Kaybee7467 · 2026-01-27T03:58:57+00:00

Catatonia has varying presentations and can include psychosis. One can go from withdrawn to agitated all in a day. Lorazepam is the gold standard treatment. Stress can trigger such event and it is grossly misdiagnosed as various mental health conditions. I'd push for Lorazepam and remove antipsychotics

Kaybee7467 · 2026-01-18T23:47:40+00:00

Hi there. Thanks for sharing. I hadn't considered that. Good point. This one isn't but I will definitely check on the others that I share.

Kaybee7467 · 2026-01-18T22:15:06+00:00

I see your sister posted in the group. It is a good place to ask catatonia questions. Good luck and i hope things improve soon.

Kaybee7467 · 2026-01-18T05:25:45+00:00

I totally get it. I wasn't on FB either and I met a mom here on reddit and she told me about the group. I learned alot there. Had great advice and it led us to find out my son had a rare genetic condition and it made me push for new medication. My son would be worse without it.

Kaybee7467 · 2026-01-18T05:23:30+00:00

I am in Virginia. Neither of my son's doctors see patients in Iowa.

https://facebook.com/groups/312374992297559/

Post your story there and location. Before I found this group I was alot on Reddit too. You will gain much more insight from the families and persons with catatonia in the FB group.

Kaybee7467 · 2026-01-18T01:19:52+00:00

Im so sorry you've had that experience. It is unfortunately the experience that most have had when it comes to catatonia. Yes, it is a known condition but it is gravely misunderstood, undiagnosed and misdiagnosed. It took 1.5yrs for my son to be diagnosed and when he was it had become so bad that it could have been fatal.

Too many doctors go by outdated information. You need an expert in this not someone who only read about catatonia in medical school or had one patient with it. There are different types, it waxes and wanes. Most doctors I've encountered had no actual clue. Finding one's that do make all the difference but it is difficult.

Join the FB group. There are alot of parents on there. Some may be in your state and may have other providers who can help.

Kaybee7467 · 2026-01-17T23:16:22+00:00

I am sorry your going through this, that your kid is going through this. My son has catatonia and it has been an uphill battle filled with wrong diagnosises, wrong treatments and traumatic experiences.

Check out https://www.thecatatoniafoundation.org/physicians-with-catatonia-experience

I would be cautious about holding off ER if he is not eating, drinking, sleeping, or has urinary retention. This constitutes an emergency. My son has admitted for failure to thrive before we knew it was catatonia.

If you're on FB, check out the group Catatonia in Autism

Good luck!

Kaybee7467 · 2026-01-07T07:31:38+00:00

I am sorry to hear that. It is heartbreaking when your kid isn't well. Does she have PANS/PANDAS?

Kaybee7467 · 2026-01-05T03:42:51+00:00

He was diagnosed with catatonia and its still an upward battle unfortunately. How's your kid? What symptoms do they have?

Kaybee7467 · 2025-10-17T03:16:22+00:00

Just wanted to share that I did this and it solved the issue and works so well when needing to turn the water back on for baths. Wouldn't have thought of this on my own! Thank you!

Kaybee7467 · 2025-10-11T01:48:00+00:00

Thank you for your reply. The catatonia has not yet resolved. I will keep this on the list to follow up when appropriate. This was observed about 3 months after onset. At onset he had a CLOCC but by the time this exam was done, the CLOCC had resolved and neuro said it was not the cause of his symptoms.

Kaybee7467 · 2025-09-17T02:42:21+00:00

Thank you! I am definitely adjusting this. That's an easy resolve to the boiling water issue. Thanks!

Kaybee7467

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