Thursday we took Nicholas to the emergency room at the University of Michigan.
The aggression had become too much and he needed help. We had to restrain him that morning and it was a particularly difficult episode. It was also a difficult decision to take him there and perhaps have him admitted to the hospital.
While waiting to see a doctor Nick had an episode in the waiting area. Security guards had to help hold him down. They put him on a gurney and strapped him down with wrist and leg restraints. It was the saddest day of my life.
They wheeled him into a small room with no furniture to speak of and nothing on the walls, just a camera in the corner, and Nick strapped to a gurney like an animal. A nurse gave him an injection and we waited and cried and told him that we would never leave him.
Then we were asked to leave.
The medication made him fall asleep and he lie there with is coat half off and his arms and legs belted to the bed and he stayed that way until he woke up. Once he woke up we were able to go in and see him but he could not be unstrapped.
I'm sure he was confused and scared but we did our best to make him feel better. I found some melon and salad tomatoes on the salad bar in the cafeteria, loaded up a plate and fed him. He was starved.
While he was sleeping we talked with a doctor about the possibility of in patient treatment, they found a bed and we decided that it would be in his best interest to try and get to the bottom of his condition and find the right intervention to help him be happy and healthy.
The bed at a local hospital fell through and we were informed that there were no beds available in the entire state of Michigan for Nick or kids like him.
After he had recovered from the medication he was able to be unleashed by a small army of security guards who asked if they were authorized to use force if he "went crazy."
The restraints were removed and he sat patiently on the bed and waited to go home.
We were now on our own to find a place for in-patient treatment. It is both daunting and frustrating. Those hospitals that had open beds were to "acute" to take Nick. Others discouraged us from in-patient care. Most had absolutely no idea what to do with an autistic teenager in trouble. None were helpful or comforting. Such is the state of heath care for autistic children, or anyone for that matter, but that is another story for another time.
Since Thursday we have changed medications and added a Beta blocker to his regimen. Despite our best efforts we have not found a hospital that will take him, but we have put that option on the back burner for now anyway. As of 1:39 PM today we're doing o.k.
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Comments (22)
I send you HUGS and HOPE.
I am so sorry. I cried while reading about your son. My son who has autism suffers from the same. He is 9 yrs old and I have literally cried and begged to doctors for help. He was place on a drug by a behavioral specialist, but he quickly turned into a vegetable and was not recognizable. The family doctor removed him from this drug. He attends a special services school and it seems to work well. They can handle much more than a public school. Regardless, as a mother, there is a piece of you that burns and hurts deep in your heart... with that being said, you are not alone... I will pray for you and know when times get rough, you will not be alone! Never alone! May God Bless you, your son and your entire family
I simply can't understand why there aren't emergency measures in place for situations like yours. I'm in the UK and have heard similar stories, where young people have become aggressive and violent, and their parents have been unable to help them any longer. They have phoned social workers, called for medical help and called the police in desperation. The advice they have been given is to call the police. But when the police come, they don't know what to do either. They could arrest the young person and lock them in a cell, but what good would that do? The family end up torn apart because they don't want their child arresting, or locking up, or charging with assault, they want help to counsel their child, to teach their child how to cope with their feelings, and they want practical help to keep themselves and their children safe.
I don't know about in the US, but in the UK, parents are not allowed to be trained in restraining techniques, or ways of keeping themselves and their family safe when their autistic child is having a violent meltdown. In my opinion, this is wrong, and can lead to people being badly hurt due to attempting to handle a situation in the wrong way, or being unable to ensure everyone's safety during meltdown episodes. It is so frustrating that the support isn't there to help keep children with their families, and the therapies and support to teach autistic youngsters to cope with their feelings and energy.
Pardon my french, but those people are assess. =/ Their frickin job is to help people when they are scared, nervous, sick, or distressed...and they can't do that 'cause they're too damn lazy to read up on a very common issue? We're paying them too much. Damn.
In regards to your son, he's a person. There is a person in there. You know him, you've talked to him--so stop assuming that because he is an autistic person, that he can't be treated like a real person. If you treat someone like an idol, they will eventually begin to behave as though they are one. If you treat someone like they cannot be held responsible for themselves..well, they will act like this. Show him you have faith in him, and help him learn how to respond to his feelings. You can't just use the "he doesn't understand" excuse, because he probably does, and just doesn't know how to react to it.
Glad to hear things are OK for now. I hope they continue to be ok. It's horrible that no hospital will take him, some doctors need to step up to the plate and deal with something hands on, right away, no matter what. They sound scared. That sounds like a really scary day.
Sending prayers and hugs your way
We were in a similar spot about 18 months ago. There should be a "Crisis Team" that can be contacted during an emergency like this. Call your regional center case worker and ask them about it.
By the time the team arrived at our house the one time we called them, Daniel had calmed down. After that incident I decided I would detox him from the most recent med he had just been prescribed. We had just started our first trial of medications a year earlier with none offerering enough relief to make the side affects worth it and many of the trials turned his behavior even more aggressive. He was miserable, even more so than we felt in trying to work through it.
Puberty is a trying time for most teens not to mention a child who has such profound issues due to autism. If the communication is an issue it makes it even more daunting but from what I hear it is something that will subside somewhat when things hormonally even out. The trick is to be cognisent of the signs they are sending to you via aggression. Most likely there is a lot of anxiety born of fear and frustration.
We are using passaflora, inositol, L-theanine and Velarian root. You may want to ask your doctor about being able to try any or all o these safely with any meds your boy is taking. It's worth a try. MD's aren't keen on natural remedies but I've been able to show Daniel's doctor at UCSD that this is working for him and ultimately our family as a whole.
My heart and prayers go out to you and for your family.
www.autismmom.net if you want to see where we've come from in our journey.
How far are you from Chicago? Maybe one of the University of Chicago hospitals would be able to help? They claim they're the best in the Midwest, they should prove it by being able to help autistic children as well.
I think the main issue is that our hospital system is not set up to help in these situations. As much as we want to believe we can go to a hospital for mental in patient care it just isn't that way in most cases. Many hospitals are not staffed to deal with syndromes because it is a syndrome not an illness. There is no shot, pill, or surgery that can fix autism and that is probably why you have been turned away from hospitals. Unless there is a psych ward the hospital would be of no help to you besides being able to restrain your son. I don't mean your son is crazy but rather most hospitals do not staff behaviorists and psychologists who can help understand the cause. At most they have a pediatrician who knows what autism looks like but has no clue as to the best treatment of symptoms.
You may look into a special care facility. I may be the only hope to getting in patient care outside of a psych ward.
I am so sorry for your ordeal. It is very sad.
I'm a third year medical student right now in Boston, rotating through psychiatry, so I'm familiar with ED triage and the Acute Psychiatric Service (APS), which is probably similar to what your son went through. UofM is my alma mater for undergrad. It's the same hospital where my brother was first diagnosed with autism 20 years ago, and it's startling to me to know that things have not changed so much for kids with autism in terms of knowledge about it and treatment.
As a medical student, I know we are not taught. Med students don't know and residents know maybe less. We had not one lecture on autism in the first two biomedical years of medical school...we had two slides. One saying that the MMR did not cause autism, and one about thimerosol not causing autism. That was it.
So when two kids with autism and epilepsy on Keppra came into the ED on one night who were having difficulties, not many people knew what to do. And I was just the med student on call that night, looking to be educated by the house staff. No such luck on that front.
I am saddened that you had to go through that, see your son that way, that your son had to go through that. I am saddened also at the state of health care, that there were no beds for your son because no one would have known what to do... It is inexcusable. We should be better than this by now.
I hope your son is feeling better.
I have worked with a few clients that have autism as well as a mental health diagnosis and in my experience these are the most difficult to treat.
I hope that you find a combination of treatment and medication that will allow your son to live as healthily as possible.
Good luck and God Bless!
You should look into the SonRise Program under autismtreatmentcenterofamerica.com
The program they do is amazing. I was a volunteer for a family who went out to Massachusetts for training (it does cost a bit) and started training volunteers. Through my own experience I've seen the program work really well. I know the boy I volunteered with would get aggressive when he took medicine for strep throat. Strange things like that would set off his aggression. Don't give up! I don't know if you looked into enzymes (Enzymedica is one company) or the different casein free & gluten free diets, but the family also looked into that.
Good luck! I understand your situation!
We used oral chelation for heavy metals about 7 years ago for our son with Asperger's Syndrome, and the diff it made in him has been phenonamal. Try getting in touch with Dr. Sherry Tenpenny the Cleveland, Ohio area. I forget the name of her clinic, but we'd have gone there next had our local Doc not been able to help us.
Thus far, for no reason at all, I have been lucky in that respect. My thoughts are with you. Stay strong.
-hugs- hope everything works out for you. I'm sorry that none of the hospitals will take him.
*Hugs*
I am sorry that your son had to go through that and I hope very much that you will be able to find the things that you need for him. You are lucky to have him and I have no doubt you will do everything in your power to help your son. He is lucky to have a father like you who will do that.
My family and I recently went through a very hard loss, and all I can really say is keep him close, love him, and do everything you can for him. It sounds like you are doing all of those things and that together, as a family, you will work things out and be okay.
I would just like to let you know that after reading your son's story, it reminded me of why I want to become a special needs teacher. For a while now I've been questioning it because I am working with kids more than I ever have and it's not quite what I expected.
But my reasoning for wanting to work with kids like yours is to be able to truely help them and create a safe and caring place for them to go because often times they have to face more adversity than they ever should have. I always love seeing the progress they've made from the beginning to all they are able to do in the end. Good luck with hleping your son and thank you for telling this experience. As a result, I really have rediscovered why I first became interested in this line of work at the age of eight. I hope you let your son know he's an inspiration. And congratulations to you for being such a great dad :)
I hope you find a treatment program that helps, and that Nick is okay.
I've been there before with a child who does not have autism, but other severe mental health issues and the road of in-patient care is a hard one to take. Just making the decision to do it quite stressful all on its own-but to then be told it's up to YOU to find a place? Unimaginable!
I'm glad the crisis passed and that you're moving forward. I wish I had a magic wand for you and Nick. You're all in my prayers....
Don't Give Up..
He'll definitely get better.
Here are some experiences of mine, and some tips that may or may not help. Hopefully will though.
My 22 year old autistic sister is on seroquel and setraline.
She only takes a small dosage each day, and I believe it is helping her plenty.
Seroquel is an anti-pyschosis. That sounds horrible at first glance, but what it mainly does is balance the blood flow in the brain. One factor that causes social impairment in the brain is a shortage of chemical imbalance and blood flow to the brain.
Setraline is an anti-depressant. Sounds pretty straight forward. Basically, it calms the nerves to make patients feel more positive about things.
My sister is getting homeopathy treatment. Ask your local Naturopathic about what treatments are available to you.
After getting a one-time medication from my Naturopathic doctor in Canada, shes doing much better. Talking more, requesting things, asking questions and more.
The cure is out there, you really just have to find what's best for your Son.
I found a cure.. It's hope.
@A - Your comment that "medicine for strep throat... set off his aggression" reinforced an idea that I've been considering. Could antibiotics and immunisations cause the body to use up and need more vitamins than normal and set off bad reactions for individuals who were borderline deficient?
The following link suggests that antibiotics can cause the body to use more vitamin B9 (folate) than normal. A deficiency of B9 can lead to irritability. Perhaps some autistic people are extremely sensitive to the changes in their bodies and react far more severely than the non-autistic.
http://autism-therapy.suite101.com/article.cfm/treating_autism_with_vitamin_b9
This might be a synthesis to the controversy over autism and immunisation, etc. Perhaps the doctors are right that immunisations do not cause autism. Perhaps the anecdotal observations should not be dismissed: children who are mildly autistic but did not exhibit symptoms prior to the immunisation may in fact have major reactions -- but not to the immunisation per se, but because they are hypersensitive to the side effects in their bodies, including those related to depletion of critical vitamins. Thus, immunisations might not cause autism, but might make autistic behavioural patterns undeniably evident. Further, this suggests that it might be appropriate to administer an appropriate dose of vitamins along with antibiotics or immunisations, to moderate the effects.
I'm not a medical doctor, and I haven't really developed real support for this theory, it just makes sense to me and seems to fit with what I've heard. I can't see what it would hurt to give a reasonable dose of vitamins when doctors insisted on antibiotics or immunisations. It might not prevent the bad reaction, but it still might moderate it. Have I stirred up a hornet's nest by questioning both sides? I dunno.
Getting back to the case of Nick, is it possible he just went through a growth spurt or something that might have caused a vitamin deficiency? If so that might have led to his aggression if we assume that autistic people are prone to and/or hypersensitive to bad reactions from deficiencies.
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