Help....when to be admitted?

[rhyanen]

When is it time to take your child to the hospital?  My 17yo son is in a bad flare right now.  He had a recent mycoplasma infection back in Jan however was put on the wrong antibiotic. He's had two syncope episodes within the past 2 months. Low blood pressure, increased heart rate. Food refusal. We took him to the ER and they gave him IV fluids and put him on azithromycin for the mycoplasma. Bloodwork unremarkable except for elevated monocytes and some electrolyte imbalance. Followupscwith neurologist and EEG next week.

Forward two weeks and he is getting worse. He is delusional and paranoid.  He thinks a friend of his is psychotic and is coming to kill him and the rest of the family. He had a rage episode yesterday which caused him to bolt out of the house barefoot running down the street. Extremely unusual for him as he is very agoraphobic. We were worried he might bolt in front of a car and get hit. I was able to calmly get him back in the car.

I had to sleep in his room with him last night.He was terrified and said that his brain feels fractured in a million pieces.  He kept getting up and peeking out the windows. He kept saying he doesn't want me or his dad to die. I am at a loss. Do i take him to the ER to be admitted? No one in our state treats PANS however his pediatrician will treat with antibiotics, so I am worried the hospital will just put him on a bunch of psychiatric drugs. 

He was diagnosef by Dr. A in Phoenix and received a second diagnosis by the CPAE clinic at UA Banner in Tuscon. I cannot get in contact with either facility. Never had IVIG. Concerned about steroid burst due to his racing heart. We're desperate. Can anyone offer me any advice?

 

Thank you!

[MomWithOCDSon]

Oh my, I'm so sorry!  Your son's description of how he's feeling reminds me vividly of Susannah Cahalan's description of her own auto-immune illness in "Brain on Fire."  She, too, experienced paranoia and some other symptoms that many traditional doctors would all too readily dismiss as solely psychiatric manifestations, dispensing with the underlying physical issues.

If your son is a danger to himself or to others, you will need to get him immediate help; if that means the hospital, then it's the hospital.  Unfortunately, I think it likely that you should expect to be met with some psychiatric interventions -- tranquilizers, at a minimum -- if he presents as agitated or full-on delusional at admissions.

You may have reached a crossroads where the abx are insufficient for meeting his illness adequately.  Can you get a PANDAS/PANS specialist on board?  I know a number of families here have allowed short-term and periodic use of anti-psychotics or tranquilizers (Valium, Seroquel, etc.), just to get there kids calm enough to travel for help, and/or to give the kid and the whole family a break and some sleep.  I'm not advocating that, necessarily, but you have to do what works in order to give your kid their best chance at a route which leads to the best healing.

Hang in there.  Hopefully, someone else will chime in with more direct experience that may resonate with your situation.

[kakrpa]

I completely agree with MomWithOCDSon. It's not like anyone wants to be in this situation, but it is what it is, for now. If that means you need to keep him and your family safe, then medicine might be appropriate and as a temporary measure. I used to deal with tremendous OCD and finally found relief with appropriate psych rx's. I was so afraid of having to get on them, but my life would surely be different (worse) for me now had I not decided it was time to put my ego aside and get the help I needed (speaking for myself only here). I hope this helps you, your son, and family ((((hugs)))).

[searching_for_help]

Please ask your pediatrician to go to the Pandas Physicians Network. (www.pandasppn.org) It's a site for and by physicians. Your ped can also contact Susan Swedo at the NIMH. They are there to help physicians know how to treat.

I feel for your situation. Been there, done that. We had terrible experiences with psych wards, but sometimes that's all you can do until you can find help. Please demand that they run some kind of test to see if there is brain encephalopathy. Sadly, they probably won't, so you'll need to get some docs in place willing to look at the PANDAS/PANS info or contact Swedo.  

I wish you the best. 

[JSL25]

When you take him to the hospital, use the words autoimmune encephalitis. Maybe they’ll be more helpful looking into that and treating that. 

[bigmighty]

My DS only responds to bactrim to treat mycoplasma infections.  He also needs 3 week steroid taper to eliminate the accompanying neuropsych symptoms, but I understand that you might be afraid to consider steroids right now.  My son always takes a 600 mg turmeric capsule 2x daily to reduce brain inflammation.  Is your son at least taking ibuprofen around the clock (like 3 pills every six awake hours)?  Anything you can do to reduce the inflammation potentially could reduce the symptoms while you are figuring this out. 

Honestly, I would find any doc who is familiar with PANDAS and see how quickly you can get in to see that  person.  Ask if they can switch up the antibiotic and possibly do a closely-monitored steroid trial.  I am so sorry.  

     

[tj21]

So sorry to hear you're going through this.

After going through psych hosp., ER visits, and 6 years of flaring, etc. w/DS18 (when 12 thru present), I would concur re. hospital if you don't yet have a good PANS/PANDAS MD/NP, psychiatrist, or someone who can intervene to keep you all safe. At minimum something to buy you time to figure out next step. We now have a PRN med ("dart gun") for emergencies; allows us to keep him safe and with us. 

[bobh]

On ‎3‎/‎24‎/‎2018 at 7:31 AM, jsl25 said:

When you take him to the hospital, use the words autoimmune encephalitis.

If it is not too late, I say "Yes!" to the above.  I think even dropping the autoimmune would be appropriate.  "Please consider or eliminate the possibility of encephalitis" to keep a doctor with bias against PANS/PANDAS from treating you unfairly.