The Migraine Never Ends for Profound Autism Families
However once we put him in our van he started punching the windows, so we brought him back inside.
Angela K from Connecticut wrote this post on Facebook after her adult son with severe, profound, DefCon level 500, wicked terrible, call it what you will autism suffered not only from the migraines that landed him in the hospital, but the hospital "care" as well. She wrote to the Commisioner of the Department of Developmental Services and the head of the hospital. I asked for, and received, permission to share her plea.
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Hey Everyone,
I know you all are probably tired of reading my ongoing posts about XXXXXX, but it's important to me to share what he has to go through just to receive medical care. I did not post what all happened to him at Bristol Hospital but I decided to write a letter to the DDS Commissioner Jordan Scheff and I felt it important to share it with all of you.
Commissioner Scheff & James Carta,
I just want you both to know that on Friday 4/25/25 Ed, XXXXX & I took XXXXX to the Bristol Hospital ED because XXXXX had (what looked like) a 3-day migraine. Connor waited 4 hours in pain until he was seen. Once we went back to a room, XXX, XXXX & I held him down and 2 others helped as they gave him a shot of ketamine and one arm and migraine meds in the other. I specifically told the doctor NOT to give him triptans because they do not work....once I received the paperwork I noticed they gave him sumatriptan.
Once home XXXXX was worse than he was when we took him to the hospital. He did not sleep and was in pain until he finally passed out briefly.
On Saturday morning he was losing his mind in pain, so we decided to drive him to UCONN ED. However once we put him in our van he started punching the windows, so we brought him back inside.
We then called 911, which was a shit show. XXX prepped the police officers and EMT's once they arrived. There were 4 police officers trying to hold down a naked XXXX in our dining room.
They then called for backup and 2 more people arrived. They gave him a total of 4 shots of Ketamine & Haldol and still had to cuff him to put him on the gurney, then put arm restraints (or 4 point restraints) on him. It took 6 people to transfer XXXX into the ambulance. Some of the officers were bitten and or kicked in the face. XXXXX only subdued due to the meds.
The police officers told XXXX that he was the hardest case they have ever experienced, and one officer has been on the force for 14 years.
Once they got him to the hospital they put him in 4-point restraints and had 4-6 people holding him down, this went on for a few hours. We never asked for a CT scan, but the doctor was adamant that he have one. At this point XXXXX was still fighting to get out of the restraints and ended up with Rhadbo ( rhadbo - Search), basically he fought so hard that the muscles in his body started breaking down and it showed up in his blood work/urine so the doctor did not feel he could release him until he was hydrated and had more medicine in him to help replenish the damage that was done.
When XXXXX could not sit still in the CT machine, they brought him back and the doctor said, and I quote; WE NEED TO INTUBATE YOUR SON! They asked us to leave the room to intubate him, once we returned, I noticed he was moving his body, and he started shaking....I yelled he is having a seizure. The Doctor came in and asked if he had a seizure disorder. OMG, he has epilepsy and that should be on his chart. XXXX proceeded to have 2-3 seizures while intubated. They increased the meds he was getting and once they got to 40mgs they had to get him upstairs. 50mgs is the highest dosage, and it was quickly approaching since he would not fall asleep.
Then we were told that XXXXX needed to go upstairs to ICU. They disconnected a few things, bagged him on the way up, and then we heard ICU RAPID RESPONSE! We are still not sure if he coded, or they were calling for help because he was combative even though by now, he should have been unconscious from the amount of meds they gave him.
I stayed overnight with XXXX in ICU. Around 8 pm they decided to try the CT scan again since he was intubated....they packed him up and wheeled him downstairs. Once down there he woke up while they tried to transfer him to the machine from his bed. They brought him back up to ICU. He slept all night on the ventilator. Around 10 am on Sunday morning they decided to give him meds to paralyze him so they could get a CT scan w/contrast and an MRI. They were successful. But all scans showed nothing abnormal.
XXXXX then started waking up, he had soft restraints on both arms. I happened to look over at him and he managed to get his head close to his right hand in order to grab the breathing tube. I ran over to him and grabbed both while yelling for help. At that point, XXXXX basically took out his own breathing tube. And after all of that....he still does NOT have a migraine med to help him when he has pain. He does not have a mood stabilizer because his new Psychiatrist said he has gone through all of them except Caplyta. We have an appointment tomorrow with a new Neurologist and he wants me to ask her if XXXXX is a candidate for it. If not, I am not sure what he can do for XXXXX.
The reason I am telling you all of this is because for 28 years this young man’s life has been horrible when it comes to medical care, doctors, nurses, specialists, etc. The fact that he needs to be sedated for blood work and dental work and that he requires anesthesia for CT scans, MRI's and operations should NOT be so hard to arrange. But they are and I am sick and tired of it. I think ALL parents who have a kid similar to XXXXX are as well, and NO ONE is doing anything about it here in CT and that is NO LONGER good enough or acceptable.
XXXXX is a human being, he has 2 medical insurance policies, and he deserves the same type of care, compassion and dignity that all of us require when we are sick, need medical care and need accommodations.
I do not understand why the State of CT does not have dedicated medical facilities throughout the state for individuals with disabilities who require sedated blood work, dental surgery, MRI's, CT scan's etc. in a friendly environment where staff are not putting our kids in 4 point restraints and having 6 people hold them down the entire time they are there. Where staff/doctors/nurses are properly trained to work with individuals who have autism and other developmental disabilities.
XXXXX should NOT have gone through what he did just because he had a friggin 3 day migraine period!
This needs to change and now!
Thank you,
Angela K
And now we are STILL waiting for his new migraine meds after seeing the new Neurologist on Wednesday. They are sitting at CVS waiting for a second authorization from his doctor who apparently didn't fill out the necessary paperwork, and Caremark said it could take 1-3 BUSINESS days to approve. I am so tired of this BS!!!!
What a horrible account of the life of a profoundly autistic young man! My adult son with autism also has certain triggers that will set off a meltdown and result in banging his head on the floor or wall. Examples are if a movie or TV show features people loudly arguing or if we sometimes have disagreements in our family and so we keep the TV volume on very low so he can't hear the yelling. The volume is so low that I need subtitles to know what people are saying. I have also seen severe autism in my son's day program and schools and the staff can not control the behaviors that threaten them and the other participants. One young man had to be restrained by three staff members and they could not get him to calm down. He is no longer in the program. When will the medical and research people find the answer to help not only these profound cases, but all the cases of our children/adults who have suffered from neurological damage that could be cured with the right medications. Research is the answer and we desperately need it NOW!
Posted by: Gayle | May 13, 2025 at 09:42 AM
So sorry to read this and know personally of two families with about the same level of problem both boys,by the way one nicknamed Taz.....I hope someone finds a cure for this soon.Maybe with Trump turning the screw on their profits Pharma might sit up and listen.Rescind the indemnity out of jail card please RFK..RFk said in front of Trump that Pharma paid him 100 million but Trump isnt bought.
Pharma For Prison
MMR RIP
Posted by: Angus Files | May 13, 2025 at 03:58 AM
We also give our son 1/2 tsp two or three times a day of Nutribiotic sodium ascorbate, cod liver oil, mending naturally probiotic gold and vitamin D3, pure encapsulations zinc, selenium, magnesium, iodine; betaine HcL pepsin with meals; now and then vitamin B complex. A long time ago, I tried giving him calcium but it made him go crazy both times I tried different brands. He doesn't need it. His levels are normal anyway. I think it is interesting to see what people give to their children to try and help them and support their compromised body and brain.
Posted by: lorim | May 13, 2025 at 12:02 AM
We deal with self injury in our 22-year old son every day. Prayers for him help the most. Also, GAPs style diet though no longer followed rigidly. Also, homeopathy for PANS/PANDAS from Resilience Naturopathic out of San Diego but we don't go to the physical address. He does take two halidols per day which is down from what it used to be. We started giving him a Nicoderm 14 mg nicotine patch once a day as my husband heard it can help with self injury about a month ago and it does help although I don't like the toxic "inactive" ingredients. Fiji water is helpful for getting aluminum out safely. He used to be like a volcano where it built up and then he exploded in self injury and aggression when we tried to stop him. Now the self injury is more often but we can stop or wrestle him without aggression usually at us. Also, we use some tinctures from homegrown herbalist like teasel root tincture, hops tincture spray (for pain), echinacea root tincture to spray on wounds.
Posted by: lorim | May 12, 2025 at 04:25 PM
Horrific!
Did RFK Jr. get a copy of the letter?
Did this young man develop his autistic traits after his childhood vaccines?
Posted by: Emmaphiladelphia | May 12, 2025 at 09:28 AM
Good morning to all. So sorry this is happening to the lady's son. We too are experiencing an increase in aggression from our Sam. It is hard trying to figure out what could be the causes. Unfortunately, the professionals in white coats have not been much help. And in many ways they are not to blame, some care , but have little to no training on how to deal with someone with profound autism, were, any moment could be a trigger that leads to a rage.
God help us all. Glad she is advocating for her son. Blessings to us all.
Posted by: Gerardo Martinez | May 12, 2025 at 06:19 AM