June 14, 2012

Fighting for Autistic Children: The Endless Battles

Award Winning Non-Fiction Blogs - BlogCatalog Blog DirectoryWhen Warrior Moms Fight for Autistic Children

Just when I think I can lay down the sword, another battle begins.

Moving safely through our healthcare system has never been easy. Whenever my son, Jamey, goes into a hospital setting I find myself blocking and intercepting incoming assaults to his health and safety.

Albeit this latest medical fiasco isn’t as bad as before (as in the time a doctor ordered Haldol for self-injurious behavior and nurses didn’t notice our son in subsequent severe retrocollis or having an olygyric crisis, to which I had to demand cogentin to reverse—a situation that, to this day, still gives me nightmares). What if I hadn’t caught this?

Anyway, last week, Jamey gets what we thought was a spider bite on his leg. Self-injurious behaviors and vocalizations rise. He refuses to walk on leg. We take him to doctor’s office.

Doctor diagnoses wound as cellulites (severe inflammation of subcutaneous layers of skin). Gives IM (intramuscular injection) of Benadryl and IM of anti-biotic Rocephin. Prescribes Septra PO (by mouth). After appointment, Jamey is laughing, trying to run around house, not hitting self, everything seems great. I’m always on edge when things are great. Before bed, he gets dose of Septra.

That night, Jamey develops a fever. Home health nurse on duty applies ice packs. Gives Advil. Two hours pass. Nurse texts me around 4:30am, says wound is hot and swollen. Around 5am, Jamey goes into a tonic clonic seizure. Then another. Then another. Nurse administers home rescue medications. Doesn’t stop seizures. Temperature is now 101.5.

We call 911. Paramedics transport Jamey to hospital, administering medication for yet another seizure, en route.

Jamey gets to hospital. This is where it always begins.

Me, becoming the mother from h#@! I don’t want to be the mother from H!@#. I don’t like the term mother from h#@!. To me, it’s more like warrior angel mothers from heaven, because we’re there to perform a God given duty: to protect our children from harm in a fallen world, in this case fumbled medical care that could kill our children. Not a threat you can just downplay and right off as a non-serious threat. Haven’t we all seen enough investigative news reports showing, when things go wrong, hospitals errors or mismanagement can kill you?

So I get to Emergency Room. I find Jamey screaming. Right away, I know he’s been given too much Ativan. Ativan is good for stopping seizures, but once it’s past 6 mg, it triggers self-injurious behavior. Jamey’s autistic brain resists being sedated.

So here we are. Five nurses surround him, trying to stop him from punching his head. The second they see me, “Mom’s here.” Three split. I notice 2 IV lines have been blown in his arms, which isn’t necessarily anyone’s fault. When Jamey’s upset, he’ll twist in strange positions. It’s tough to get an IV to stay in. I notice blood pours from one IV site, which is left UNCOVERED.  How difficult is it for one of the five nurses to slap a Band-Aid on?

A nurse pumps more Morphine, Benadryl and Ativan in his IV tube. “Whoa!” I say. “If you give too much ativan it will have a paradoxical effect...a rebound effect and he’ll lose his mind.” She looks at me as if there is no such thing as a paradoxical effect. Hey, I warned them.

Nobody was monitoring his respirations, despite ample Morphine on board. I looked at monitor. Respirations were 10. Nurses had temporarily split to handle another patient. Alone, I noticed MY oxygen mask from home, which paramedics had taken, was attached to hospital’s oxygen supply on wall. Well, hey, nobody’s here, his respirations are down, it’s my friggin mask, and I’m not waiting. I apply mask, turn on oxygen @ 10 -lpm and watched his respirations slowly climb to 11, 12, 13, 14.

Nurse came back. “Oh, you put oxygen on?” she inquired. Hey, a mom’s gotta do what she has to do. It’s not like I’ve never applied oxygen.

Always ask questions. Know what’s going on. Marvin Gaye....What’s going on? What’s going on?  Central IV lines...symptoms and signs....don’t punish James with the same old sames... “How many drugs has my son been given since he’s been postictal (time after seizures stop),” I ask.

I’m told he’s been given, intravenously, a total of 12mg of Morphine, 4mg Zofran, 6mg Ativan (on top of 4 mg given prior by home nurse and paramedics, for a total of 10mg on board) and 100 mg Benadryl, within past 5 hours.

Can anyone say rebound effect? After 5 hours of episodic, intense head punching episodes: A nurse throws up her hands: “I CAN’T do this anymore!” she says. “He won’t stop hitting himself...I don’t know what to do.” I’ve never seen a nurse just give up. Welcome to our world honey, and you’ve only been in it for less than half a day. Try 21 years.

I felt for this frustrated ER nurse. She was a good nurse. A good nurse will get angry because they recognize a situation that is so nuts, so illogical, so beyond any media’s presentation of what severe autism really looks like, that they are ready to punch a wall from the acute shock and frustration. She wanted so much to make him stop hitting himself, but giving more drugs was having the reverse effect. She didn’t understand why. Welcome to the world of autism. Where the autistic person teaches us how much we really don’t know when we think we know, as if they’ve been sent here to spark a critical-creative- thinking revival among mankind.

A few minutes later, this same ER nurse got so stressed, she jokingly (was she joking?) said she was going to punch the pharmacist if he didn’t bring the 14mg Nicotine Patch, which was one of the last treatments of hope I suggested to REVERSE the over-sedation that was making him more self-abusive.

Jamey, as is inevitable during such times, was put in restraints. Naturally, this made him more angry and vocal, but was necessary because there weren’t enough nurses to hold his hands and prevent him from punching himself and I couldn’t sit there alone and do it, my arms were weakening from holding and blocking his fists from reaching his head.

After that last dose of Benadryl he almost did a back flip off the table, taking table with him. He also managed to get out of restraints 3 x.

Here she comes. “I’ve never seen anything like this,” commented a floater nurse, who apparently has worked there several years. Thanks NBC, ABC and XYZ for your fabulous job of representing the face of severe autism. I guess people expect Jamey to build a computer or predict the winning lottery numbers. “Does he have a special talent?” asked a technician helping nurses. Right now, he’d be a pretty scary contender in an MMA fight.

So poor Jamey, he’s off his routine, in a strange place. He’s freaking out. He’s pumped up on enough meds to fuel a rock star’s personal party. He just wants to feel better. And it’s not getting better. I feel his head. “He’s really hot,” I say. “Can you please check his temp?” Nurse monitors vitals. Heart rate is 115. Temperature 101.9. Nurse gives Tylenol suppository. Heart rate elevated?

Here’s a lesson I’ve learned from living with my son: When dealing with an autistic patient prone to self-injurious behavior: TREAT OFF baseline signs and symptoms. For instance, if heart rate is elevated when usually not elevated, bring heart rate down; because chances are acute rapid heart rate scares the autistic patient, as it was scaring my son. I could tell by looking at him (eyes squinted), and by the fact he was punching his chest. Though, he could’ve been punching chest because he had aspirated during seizure. I bet for both reasons.

A psychiatrist was called in. When psychiatrist suggested we try Haldol and Thorazine my ears started ringing and I felt dizzy. Then he suggested Depakote! Depakote is the seizure medication Jamey was taken off of a few years ago because it caused hyperammonia. Maybe there is a purgatory and I’m in it.

“Doctor,” I pleaded. “Why not bring heart rate down with Inderal (propranolol) which is a PRN med we have at home, that didn’t work in past for self-abuse, but that’s because last time we tried it, he didn’t have a racing heart.” Why I am always hyper verbal when battling for my son? My brain begins sorting information from stored memories and firing out information, as needed. Hearing more drug suggestions that have already been tried in past and failed, I felt myself becoming rude and defensive. They are here to help Kim. Here to help. Help them help Jamey. You can’t expect people, even experts to know everything about him in 5 hours, or while doing a drive by consult.

On phone now, “What is taking so long?” I heard the ER nurse arguing with the pharmacist. Nobody could understand why it was taking so damn long. Apparently, hospital was also out of IV diazepam, which I was grateful for, given the Ativan wasn’t working, so that wouldn’t have helped calm him, though it was also suggested.

He’s over sedated. Paradoxical response. Will somebody please listen? I know my son! NO more sedation. NO more morphine. No more Benadryl. I suggested giving him 5 mg of Ritalin to bring his brain to baseline. Shoot, he had so much ativan on board there’s no way Ritalin would lower seizure threshold at this point.

The psychiatrist suggested clonidine patch. Fine. That might work.

At this point, clonidine wasn’t on board, nor was Inderal, so Jamey was still screaming. Apparently, the word STAT doesn’t always help deliver meds faster to ER staff.
Jamey still in restraints and still managing to Houdini himself out of restraints, nurse was losing her mind. I was losing my mind. The constant screaming, dear God, please Jamey stop screaming. Jamey was ready to fly off the table, rocking his body back and forth so hard I thought he’d pull the restraints off again. “Call for consult!” yelled nurse. “He needs to be intubated and sedated!” INTUBATED and SEDATED? What the hell? NO!

Thank GOD the psychiatrist intercepted that one. I wanted to hug him. He told ER nurse NO WAY. “We are not intubating this patient.” This psychiatrist understood what intubating an autistic patient with self injurious behavior would’ve created: an extremely dangerous situation where Jamey would’ve ended up pulling out tube or worse. For sure, it would’ve caused more problems. I recall time Jamey was scoped for an exam and he woke up while tube was in throat—despite ungodly amounts of sedation. A total nightmare experience for all involved. I had never seen him look so terrified and helpless.

Finally, @ 1530 the Nicotine patch arrives. 14 mg patch placed on shoulder. @ 1611, 1 mg Inderal IV given. Within 20 minutes, he was calmer. Fell asleep. Heart rate down. Temperature still up, but would start dropping within an hour. Later, Clonidine patch applied @0005. No more morphine, Benadryl or ativan. Inderal, Clonidine and nicotine did the trick. Kept him stable. 

Jamey was later admitted and placed in Intensive Care Unit, probably because they wanted to monitor for seizures. They put him in one of those restraint beds. I promptly warned everyone that I didn’t want to have happen what has happened before: LEAVING him in restraint bed with restraints on, without monitoring him. They didn’t place restraints on him. The bed was good, though, as it prevented him from repeatedly getting out of bed and possibly falling off bed. And he liked looking at the small circles in the mesh lining.

Nurses up in ICU were really great. One RN, at my suggestion, went the extra few minutes to call an occupational therapist to bring Jamey a chew tube.

I had earlier asked doctor to prescribe one to one sitter, so that was in place, thank God. I couldn’t stay there every second. I was physically and mentally burned out beyond the normal burn out you get during times like this. Shooting pains pounded my body. I normally don’t get headaches, but lighting bolts were going off along the sides of my temples...

When I felt Jamey was stable, and that I had finally (after repeated calls to cafeteria and asking nurse to make sure it was done) got the pureed diet he needed, I went home to take a nap. Then I hiked for 30 minutes and felt much better. Just shows how extreme stress can attack your body. I can’t imagine how Jamey was feeling. I needed to get him out as soon as possible and back on his routine, which required his leg wound was cultured so we could see if it was a staph infection.

The phone rings. It’s a doctor I’ve never met. He’s arguing and arguing about doing a culture on Jamey’s wound. He goes on and on about how he’s the educator for Staph aureus/MRSA infections, which is apparent since he’s lecturing me about what staph is, as if I don’t know and I’m some listener in an audience.

I don’t understand irrelevant information. If I already know something it drives me nuts if someone tells me it as if I’m just learning about it. My brain shuts down. Blocks unnecessary incoming information. I become agitated. My brain wants only to hear facts. Concrete specific facts. Vague ambiguous information torments me. I just want to handle a situation in the most effective and aggressive way possible to help my son. Anything that gets in the way of this target goal really ticks me off, especially nonsensical talk.

“Can you please stop?” I asked the doctor. “I don’t need to hear over and over about what staph is, how it started, what the statistics are...I know what staph is. What I need to know, what you need to find out is what TYPE of staph strain my son’s wound has. Can you please do a culture?”

When I asked for a wound culture, it’s as if I asked the doctor for his first born child.

He became defensive and combative. “We treat staph empirically,” he kept saying.

Ironically, a 2004 report, titled, “Get it Right from the Start or Get a Call from Infectious Disease,” by Dr. Burke A. Cunha of the Infectious Disease society of America, says, “Empirical therapy is about getting it right from the start, to optimize outcome, minimize therapeutic failure, minimize potential resistance, and avoid serious side effects in a cost-effective manner..”

With appropriate empirical therapy for bacteremia, the lesson is to get it right from the start so that recommendations for subsequent corrective changes in therapy become unnecessary or to get a call from the infectious disease consultant”

WITHOUT a wound culture, the doctor was GUESSING which anti-biotic would target the strain of staph Jamey had. Strains are bacteria that exist within the same species.

Hence, empiric therapy for a case of staph in a case like my son is absurd. He can’t talk. He can’t tell us if he’s feeling better. He is already vulnerable due to having epilepsy. Any infection lowers seizure threshold.

Despite this reality, the doctor kept arguing that since he prescribed Clindamycin, a broad spectrum anti-biotic, it “should” take care of any staph strain Jamey had. It should? Sorry, it should is not good enough. I want an anti-biotic that is KNOWN to target and eradicate the specific staph infection he has, not one a doctor THINKS he has.

My brain does not understand illogical crap. My brain sees that given the reality specific strains of staph respond to SPECIFIC drug therapies, if you prescribe clinadmyacin to a staph strain that is RESISTENT to clindamyacin, the infection gets WORSE, thereby jeopardizing my son’s health and safety and leading to chronic infection and worsening of staph infection, which research shows can have lethal consequences..

Why the hell wouldn’t a doctor want to know the exact strain so you could prescribe the appropriate anti-biotic?

Could the spread of MRSA—the more aggressive strain of staph aureus be spreading because many doctors aren’t identifying the specific type of strain involved before they prescribe anti-biotics? I submit the spread and rise of staph is rooted in doctors NOT doing wound cultures to identify the specific strains that would be susceptible to specific pharmacological agents.

Let’s look at what is happening to Jamey right now. As of June 8th, Jamey has been given, by medical professionals who have seen (in the absence of doing a wound culture) an Intra muscular injection of anti-biotic Rocephin, pills of Septra, then at ER, a doctor changed it to IV of Levoquin, then another doctor changed it to IV Flagyl and then the doctor that was arguing with me about doing a culture changed therapy over to pills of Clindamycin.

At some damn point you’d think someone would’ve taken a culture to make a proper diagnosis. There are several strains of staph. Giving the wrong anti-biotic makes the staph evolve into a more aggressive strain. An untreated staph infection kills people. Getting it right from the start could mean difference between healing and ending up in the morgue. So pardon me if I seem like a bitch of a mother, but it’s only my child’s life I’m talking about here, doctor.

To make matters worse, while I’m begging doctor to do a wound culture, he says, “Look, I really have to go now...I have to get to a patient’s birthday party.” Nurse ended up getting a culture when the wound broke open.

Before Jamey is discharged, RN asks if he could give Jamey the "Pneumovax 23" or "pneumococcal 23-valent vaccine". "No, absolutely not," I say. "He has a seizure disorder and an infection. His body doesn't need anymore insults." RN wrote in chart, vaccine "not given pt's mother refused," as if that's a bad thing. Research shows you shouldn't give vaccines to people with epilepsy or patients with a current infection. It further compromises immune system. Another interception. 

A day after Jamey was discharged from hospital, I get a call from his regular doctor, who tells me “I got the results of the wound culture...we need to stop the Clindamycin and start James on Doxycycline.” 


Anonymous said...

Just an FYI: persons with fevers often have an elevated heart rate--the administration of an antipyretic medication, such as Tylenol will decrease the fever and with it the heart rate.

Kim Oakley said...

Good point. Though with over 100 mg of Benadryl on board, tachycardia from Benadryl possible.

Autism Reality NB said...

Stay strong and keep fighting Kim. My best wishes for you and your family.

Orphan`s Ministry said...

Hello!How I can send you personal message?Thanks

Anonymous said...

1. it is cellulitis not cellulites ( cellulite is a modification of skin topography evident by skin dimpling and nodularity that occurs mainly in women on the pelvic region, lower limbs, and abdomen, and is caused by the herniation of subcutaneous fat within fibrous connective tissue, leading to a padded or orange peel–like appearance.)
2. tachycardia (an elevated heart rate) accompanies an elevated temperature (fever) because when the body has a fever it demands more energy. A rapid heart rate delivers more nutrient-rich blood to the body to fight the infection.
The fever in itself is not a bad thing, it means your son's body was fighting the infection, the cellulitis. The reason your son's heart rate increased with the fever is because his body was working harder to get rid of the fever and to cool his body down.
As the previous poster has stated antipyretics (fever reducing drugs) cause the hypothalamus(that is located in the brain and controls body temperature, as well as other functions)to override the increase in temperature. The body will then work to lower the temperature and the result is a reduction in fever. It is very unusual that a young person with no cardiac disease would be given propranolol(Inderal), a beta blocker, to decrease a normal increase in heart rate (tachycardia secondary to a fever.)
3. Jamey was admitted to the Intensive Care Unit because that is the only place in a hospital that has staffing to deal with his/your extremes in behavior. In the business it is known as a dump.
4. so glad you live in California

Lisa said...

Reading this was like reading a version of my own life just a few weeks ago. . . except that my precious daughter with autism, epilepsy, and self-injury is only six years old and this was our first incident in the ER (because her self-injury was out of control.) It was the worst experience to date, as they just loaded her with Ativan, Diazepam, Haldol, Oxycontin, Zyprexa,Versed. . . and things were so, so awful. No one knew what to do, and I could so relate to what you wrote about the nurses saying "they've never seen anything like this"- which made me feel more hopeless than I've ever felt on this journey. I am new to this, but my gut told me that she was having a paradoxical reaction to all the meds and was rebounding from the sedation. It was Hell and we were terrified.

I would love a way to speak to you personally. . . I have so many questions to ask you. I personally think she is on too many daily meds (including Thorazine-which it sounds like you have had experience with,) but it is hard to convince Dr's otherwise.

What is the best way to reach you? You can email me at


You are so much farther down this difficult road than I am with my little girl, and I would love to pick your brain. Please help a desperate mom,

thank you for sharing your journey,
Lisa- Mom to Avery

Kim Oakley said...

Hi Lisa, I'm so sorry what you went through. Sadly, I am not familiar with Tuberous sclerosis, so since that is the primary diagnosis of your precious child, that's not my expertise. What I can say is because your child is suffering from multiple seizure foci areas in the brain, this is without a doubt triggering her self abuse, so it's not like my son's situation, which is mostly rooted in behavior, though medical issues can fuel or trigger SIB. Your MAIN focus should be SEIZURE control, because in your special case with TS, research clearly shows the SIB is rooted in uncontrolled seizures that are probably scary for her. I do know a lot about different seizure meds, so please let me know if I can help in that way. But TS is unfamiliar to me outside a brief look at the research in thinking about your case.

Kim Oakley said...

Lisa: I would also add, it seems ABSURD that hospital would overload your daughter with TS on so many harsh drugs. She should NOT be on any antipsychotics if she has a seizure disorder. ALso, because what your child has is a genetic disorder, it's important to speak with a genetic doctor to find the latest treatments. Again, I don't know what more to tell you. My son doesn't have Tuberous Sclerosis, so I'm not the right person to help you. I'm sorry, but I will pray for your daughter and hope GOd will direct you to someone who has knowledge of this special circumstance.

Unknown said...

This is like reading my sons story. He could have died so any times while getting the wrong drugs to help him and the wrong diagnosis. My son also had a MRSA finger infection that went on for over two months with wrong medications. He would hold up his finger and say "fire, fire". I would call and be told "just give tylenol" are you kidding me. Finally a culture and the right medication. He could have died before everthing was figured out. I try to be a "nice" mom but I am turning into a "mom from H***. It is so frustrating. My son just suffered months of a bad reaction to risperidal that was blamed on other things until I finally figured it out and told them what was happening. Stopped the risperidal and boom he quit vomiting and retching with every meal and medication administration. It is so frustrating. Your son, again, mimics my son in so many ways. Our son has Ehlers Danlos Syndrome (along with epilepsy, Autism and SIB also) which makes it hard for him to metabolize medications in the way they are meant to be metabolized. Sedations also have the reverse effect for my son. Our son will get severe tachycardia and begin hitting his chest to get relief.

gskyhawk said...

Kim: You mentioned that Jamey was given Propranolol to reduce heart rate. In the past, has he taken this or other beta blockers for off-label use by his psychiatrist? Has it helped with anxiety, rage, or agitation? I've been finding some research journals which talk about Propranolol (or other beta/alpha blockers) reducing agitation. There is not enough research to back this claim, however. I've been reading a book by Dr. Ralph Ankenman, "Hope For The Violently Aggressive Child." He writes about positive clinical results for a number of individuals who had autism with rage behavior. For reference, his website is http://www.hopefortheviolentlyaggressivechild.com

Tracey Sherman said...

I am a father of a child with moderate/sever autism. There are time where he has almost made break throughs to be able to speak. My son has had self injury behavior as well as days and days of not sleeping.

We saw a DAN (defeat Autism Now) doctor. we finally were able to pin down the agonist to my sons behaviors. The gut. every so many months my son needs to go on a cocktail of antibiotic s and antifungals for his gut. once he goes through that, his behaviors will subside for 3 or four months. But then the symptoms will come back. usually one at a time. Constipation. aggressive behavior. being non compliant, non stop giggling for 10- 18 hours. If i recognize the symptoms soon enough I can get the antibiotics on board and head it off, but if not we have hell for days.

Rescently we started him on namenda, which is a glutamate antagonist. The thought is some gut bugs produce excessive glutamate, and this is what is driving these poor kids nuts.

Main stream docs really don't have any idea what to do with our kiddos. DAN doctors (some of them) have kiddos themselves that have autism some severe. I would love to talk to you more about this and maybe some of the things that we have gone through and have helped us can help you too.

In my thoughts and prayers

Tracey Sherman said...

I am a father of a child with moderate/sever autism. There are time where he has almost made break throughs to be able to speak. My son has had self injury behavior as well as days and days of not sleeping.

We saw a DAN (defeat Autism Now) doctor. we finally were able to pin down the agonist to my sons behaviors. The gut. every so many months my son needs to go on a cocktail of antibiotic s and antifungals for his gut. once he goes through that, his behaviors will subside for 3 or four months. But then the symptoms will come back. usually one at a time. Constipation. aggressive behavior. being non compliant, non stop giggling for 10- 18 hours. If i recognize the symptoms soon enough I can get the antibiotics on board and head it off, but if not we have hell for days.

Rescently we started him on namenda, which is a glutamate antagonist. The thought is some gut bugs produce excessive glutamate, and this is what is driving these poor kids nuts.

Main stream docs really don't have any idea what to do with our kiddos. DAN doctors (some of them) have kiddos themselves that have autism some severe. I would love to talk to you more about this and maybe some of the things that we have gone through and have helped us can help you too.

In my thoughts and prayers

Kim Oakley said...

Hi Tracey, thanks for the great information! Yes, this makes perfect sense as excessive glutamate is linked to this as well as seizure activity. I will further research this and again thanks so much for sharing what works, I hope this brings your precious son some relief!

tiffany kendall said...

is this the same Jamey i've been watching on youtube??..he is very attractive!!!..it breaks my heart to see him struggle to the young man i soo know he wants to be,i can see it on his expressions..i have a 4yr old autistic girl..iam a personal trainer & DID NOT WANT MY CHILD VACCINATED..I had a whole dr appoinment just to talk about how i did not want them cuz i was afraid of the autism scare..i did not fully breastfeed my child and was afraid she did not recieve enough nutrients,antibiodies for her immune system to handle filtering out all the mercury and junk they cut these meds with,,but he told me that if i did not vaccinate her she could not attend daycare or school,he promised to space them out,told me she was perfectly healthy & assured me nothing would happen to my babygirl,he WAS WRONG!!!!!!!,she was 1 1/2 when i caught it..i have been working hard with her,and she is able to say words,and count,she's able to say very small sentences to communicate what she wants(sometimes)..they took my baby girl:(:(,,but iam FIGHTING 2 GET HER BACK!!&you are right about God,He IS with us,working threw us to make us stronger&to prove to the devil we can hate his desease,BUT STILL BE ABLE 2 LOVE AND ENJOY OUR CHILDREN!!!.iam currently trying to put together a supplement of various minerals&vitamins for my child..if it helps i'll b letting you nad the whole world know asap!!;)..Blessings r headded your way Jamey!!!..Keep fighting!!..You must be 1 of the strongest people i've ever seen,u 2 mom;)..God Bless xox,Tiffany Kendall

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