Parenting a Teen With OCD
My daughter today. :)
If you are new to this hub, please continue down for more information on OCD.
So much to say. My daughter is now 21!! She is finishing her last year of college, and is engaged. She still struggles with some OCD moments, but her life is full and happy. The amazing thing about her is that when times are really tough, she's the one with the inner strength. Those years of fighting for a life not ruled by OCD allowed her to grow into a strong, capable woman.
I used to fear that she would live a life of terror forever, and would always need me to guide her. Please remember, early intervention and a therapist that specializes in OCD can save your child from a future of compulsions and disability. If you have any questions on her therapists, or type of therapy and/or medication, please feel free to leave a comment and I will get back to you. Take care! Remember...it's not your child acting out...it's the OCD.
2011: For those of you following this hub I have an update, and great news. My daughter just turned 18 and is now doing very well. She still has OCD, and always will, but she has learned techniques to control it. We will be meeting with the therapist for one more monthly visit, and then she will only go when she feels the need. I can't even express how that makes me feel as a parent. I now have hope for her to lead a normal and successful life.
I have to say that we had many therapists through this process as I mentioned earlier. After finding one that knew how to do exposures and cognitive behavioral therapy (CBT), Sarah was able to progress forward. The results were very encouraging. We later found a very well known specialist who not only used CBT for the OCD, but was also able to use it to direct Sarah to become more independent.
One of my strongest memories will always be the day that our Therapist Tammy asked me what we should work on next. I expressed my fears that Sarah would never be able to function without me and that she would never be able to have her own family. I broke down in tears and surprised Sarah. She had no idea I was so afraid for her. Once the therapy began to focus on Sarah's rituals of dependence, there was an amazing change. She exposed herself to her fears, adult decisions, and independence, and found that she was strong and capable. She is now enrolled in college for next year and looking forward to all the fun and freedom this new life will bring.
Thinking back to her first diagnosis, more than 4 years ago, I had no idea we would make it this far so soon. The first years were the most difficult for both of us. Because of her hard work (and mine of course) she is a healthy, happy 18 year old. She still has to struggle with her OCD, and working on it every day is part of the process. She will have to keep on it all her life to make sure it never takes over her life again. She now understands how her mind works, and what she needs to do when OCD tries to take over.
If anyone has any specific questions, please feel free to contact me or post a comment. I have decided to get busy on hub pages again since I enjoy sharing my journey with others. Good luck to all you parents just starting on this journey, and to those who have faced it even longer than I have. Never give up.
Teen OCD - A Parents Point of View
"Wait! Wait! It's not right. I have to do it again!"
These are words a parent of a teen with OCD (Obsessive Compulsive Disorder) hears over and over. Two minutes before the bus comes it could be her hair, her clothes, or the good-bye ritual. My daughter Sarah (Not her real name) has to hug, kiss, say "Have a good day.", say "I love you." and more, and I have to respond back with the same each time. The bus can be coming up the road, and even though she is mortified to have her peers from the High School see her hugging and clinging to her mom, she cannot start her day if she skips this step. It's hard enough to be a teenager with all the hormones, new experiences, emotions, and stresses. Now add obsessive compulsive disorder, a disease that disrupts your life and causes debilitating anxiety. If you are a parent of a child with OCD, then you know how hard it is to watch your child suffer, how time consuming it is, and how much it affects the whole family.
What is OCD?
Obsessive Compulsive Disorder is an anxiety disorder that is believed to be biological or genetic in nature. A person suffering with OCD will have:
- Obsessions - constant thoughts and mental images that will not go away. These thoughts produce high levels of anxiety.
- Compulsions - repetitive actions, mental or physical, that are also called rituals. These actions must be performed in order to relieve some of the anxiety.
The general consensus today is that a person is born with the inherited trait of Obsessive Compulsive Disorder, but how it manifests (shows up) in a person's life is based on environment. This means that one person with OCD will develop fear of germs, washing rituals, and checking problems, while another person with the same disorder could develop the need to count everything in even numbers or repeat certain phrases a certain number of times. It depends on the fears, triggers, and childhood experiences. It was in their genes to develop OCD, but the way it develops is different for everyone.
So What's a Parent to Do?
The first step is to recognize the symptoms and seek treatment. While OCD cannot be cured, it can be treated so that a person can lead a successful, normal life. Researchers have found that the earlier that treatment is begun, the more effective the results will be. P.E.T. scans on the brain of OCD sufferers actually show the abnormal processing that occurs. There are 4 areas of the brain involved when a thought is initiated and then goes through the process of being sorted, acted upon and then filed away. With Obsessive Compulsive Disorder, one or more of these 4 areas malfunctions and the thought does not go away. It continues to cycle through these 4 sections. One area, called the caudate nucleus, may be the culprit. One sign of hope is that, with proper treatment, they have been able to see these areas in the brain retrained to function more normally. Since it cannot be cured, the symptoms may come back again at times of stress or even unexpectedly, but using the learned techniques it can be conquered.
The first thing to do is to seek medical attention for your child. Go to your pediatrician or family doctor and get an accurate diagnosis. Once they have determined your child does have OCD, then they may suggest medication. I was hesitant to start my daughter on anti-depressants, but after researching it I realized that they are very important to the treatment process. Sarah has definitely benefited from medications along with her therapy. They help to lower anxiety levels, and make it possible to complete the necessary treatments. What are the "necessary treatments"?
The accepted method of reprogramming the brain is called cognitive behavioral therapy. CBT for short. In the past, psychologists called OCD the untreatable disease. They learned that the convential "Talk Therapy" was useless with this disorder. REMEMBER that! Some doctors and therapists today still try to use this approach. Cognitive Behavioral Therapy takes effort on the part of the therapist and the patient. The therapist needs training, knowledge, and skill along with the willingness to put in the effort needed. If you don't find the right one on the first try, KEEP trying. It took us 3 tries, but we finally found one that had all the requirements. The first one was nice, but not educated in OCD. The second understood the process, but didn't think CBT was needed for my daughter, and attempted to help her with reasoning. She was sweet, but ineffective. We finally found a qualified therapist through the Obsessive Compulsive Foundation. As a parent, your involvement in the treatment is important to the success. Most parents get involved in the rituals without even realizing it. We want to comfort and support our children. When they are suffering we want to give relief. Part of the treatment process involves becoming aware of our part in the rituals, and working with the therapist to stop reinforcing them.
Educating Friends, Family, and the Education System
Obsessive Compulsive Disorder is not easily understood by those not living through it. While we don't advertise the condition to the world, there are times we need to explain it to others. Making sure your child's teachers, guidence counselors, nurses, and principle understand is very important. Educate yourself first. There is much information online and in print. Take the time to meet with the people involved and present some of your information. Find out what options are available in your school district. Depending on the severity of the problem, you may need to request special accomadations through a 504 or Independent Education Program. These must be legally provided to students with special needs. Ask your guidence counselor. OCD tends to be more noticed and more pronounced when a child hits puberty, so you are probably dealing with a teenager once you have reached this point. Don't let them get lost in the stresses and responsibilities of Middle School and High School. Make sure you have the support you need to help them succeed.
I like to use an illustation to try to help others get a feel for what my daughter deals with everyday. Imagine yourself driving through an intersection, and seeing another car speeding through the stop sign coming right at you! Your fight or flight response kicks in and your heart rate accellerates, adrenaline is released, and other stress responses occur. Now imagine that EVERY time you come to an intersection, the thought or image of this happening occurs and the fear response is unleashed. You look around and SEE that you are safe, but your brain cannot register it. As it becomes harder and harder to drive and deal with this issue, you develop rituals to reduce your anxiety. You look left and right 4 times, then 6. You stop, look, inch forward, and look again. Eventually the obsession starts to bother you when you are not even in the car. You start to imagine "What if's" for the next time you are driving. The rituals become longer, and more complicated. This is just a simple metaphor for a very complex disorder. But by trying to imagine the fear, anxiety, and helplessness you are on your way to understanding a little of what your child lives through. Be supportive, and seek help so that he or she isn't sentenced to a life of terror. That's what OCD is called by some, a disease of terror. Being a good parent means we have to do difficult things for the health of our children. Just like approving a surgery that will improve your childs quality of life, making sure your son or daughter receives and perseveres in the proper treatment can be a painful process. If you live near a large city, seek out a support group in the area.
Signs of Hope
It's been a year since Sarah started her treatment, and we have seen a lot of progress. Unfortunately I was a little slow in recognizing and accepting the problem. Looking back now we can remember habits that started at 5 years old that became rituals later in life. We can even pinpoint a truamatic event at age 11 that triggered her obsessions and the start of her rituals. She went to a friends and watched the movie "The Exorcist". She usually called home to ask permission, but this time she didn't. She became very afraid of someone in her family becoming possessed. That seems like something that could be normal for an 11 year old. Her rituals began at night, and we didn't think of them as rituals. We tried reasoning, comforting, and finally yelling and disciplining. That may sound cruel, but we didn't understand why she wouldn't sleep in her room, had to say things over and over to us, and why we were getting so little sleep. It progressed to good-byes and other things over the next 2 years, but it wasn't until another traumatic event that it became full blown. My mother got ill and we moved in with her to help out. She ended up in the hospital, near death, and me be her side. By the time she came home from rehab, school had started and within a few weeks my sweet little 13 year old went into a 2 day anxiety attack. She finally agreed we had to seek help and was immediately diagnosed with OCD.
The medication helped to reduce the anxiety levels, but it doesn't cure the obsessions and compulsions. It took us 4 months to find the right therapist, and then the true journey began. It's not an easy process to confront your fears, attempt to gain control over your thoughts and rituals, and try to live a normal teenage life at the same time. CBT involves flooding your brain with the very thoughts and fears that produce the anxiety, in a specific, progressive manner, so that your brain habituates (gets bored with) the process and breaks the cycle. Even my macho, tough brother thinks it's cruel. It is the ONLY proven method to treat OCD. Don't attempt this yourself, or it would be cruel. They don't jump immediately into the worst fears. There is a slow, methodical process that allows the patient to set his or her own limits. There have been times when Sarah fell on the floor crying that she couldn't do it, only to be followed by a successful session and renewed confidence and hope. My daughter is a brave, resiliant girl, who wants to get better. The progress we have seen in the last 10 months is amazing, and keeps us moving forward.
Well, that's a little about our struggle with OCD. I will updating this "Hub" soon with more helpful information and more about us, so come back soon.
What is the treatment for OCD?
OCD used to be called the untreatable disease. Psychologists tried to use talk therapy. The treatment that is accepted as the only successful method today is called Cognitive Behavioral Therapy. The way it works is the patient is exposed to the thing they fear, over and over, in a repetitive manner, and the brain eventually ceases to react to it.
My daughter is now listening to tapes that repeat the phrases that bother her. She was viewing pictures for a few months, and now we have moved on to the tapes. They start with something that has a low level of stress, and work up from there. As hard as it seems, it does really work. Sometimes it's discouraging because it does take a while. When I look back at the last year, the progress is VERY encouraging. Each time she starts a new phase, she gets scared, mad, and says she can't do it. Once she starts, she finds she can do it, and then each time it gets better. The rituals and anxiety lessen as she gains a feeling of control over her own life.
There is no cure, and it is a difficult life, but with hard work there can be relief. I am hoping that her future is bright, and not a nightmare of OCD compulsions. Some day, when she is older, I am sure she will write about her experiences. She loves to write, and is very good at it. I am hoping, by the time she is in her 20's, that she can write about the cure that was effective for her. We can all dream.
Finding a Good Therapist for OCD isn't Easy!!!
I guess I will start with the good news. The news medicines seem to be helping a lot. She hasn't had any bad effects, and her stomach seems to be calmer. The ADHD medicine is really making a difference. She is still her normal, active self, but she is less frustrated. She is able to feel some control and when she starts getting hyper in school she is able to get it under control better. That makes her so much happier.
Now for the bad news. Today, I hate the counselor. That could change. My daughter and I both were irritated with her during the session. She told Sarah she wasn't putting enough effort into the process. Sarah was crying saying she tries very hard, and it isn't easy to do this stuff. The therapist understands OCD and the treatment process, but I'm not sure she understands reality, teenagers and feelings. She told us we could say "I Love You" once in the morning, and once at night. That's all. That's because Sarah says it a lot to get reassurance. We are a very loving family, and I say it plenty of times to my hubby and my son everyday. We have been in therapy almost a year, and with more years to come. Are we supposed to spend her teenage years limiting expressions of affection? I don't think so.
When it is an OCD type behavior, and Sarah is hugging or saying I Love you too much, I tell her to stop. When she is crying and scared or stressed, I AM going to hug her. She was cold and rude to both of us. I understand she thinks she has to be hard on her to get the treatment to work, but I think she takes it too far. My daughter was singing "She's a Cold Hearted Snake" on the ride home. She wants to find someone else, but no one else where we live even grasps the idea of how to treat OCD.
So I am frustrated!!! My daughter desperately wants to talk to someone who understands what she is going through. Kids usually sympathize with each other about parents, acne, boys, girls, grades, etc... She has no one to share her pain with.
Well, enough frustration for now. To change the subject and end on a better note, I went shopping for gifts today. I thought I was basically done, and then I realized I needed a few more things. Whew. Do you realize Christmas is only 11 days away. So, let's sing happy Christmas songs, decorate the house, and take a break from our troubles for a while.
New Medicines, New Hope
Sorry it's taken me so long to get back to this. My kids were sick last week, again, and I was exhausted.
So what's new with my daughter? Instead of seeing her regular pediatrician, we had to see a new family doctor in the office one day. I am so glad that happened. She seems to think that there is much more we can do for the OCD with medicine than we have tried. Some people shy away from medicines, and we get nervous when it comes to our kids. If you have diabetes, you take insulin. If you have cancer, you get chemo. If you have allergies, you might take shots. OCD is very debilitating, so finding something that works better is exciting.
As I mentioned, I research OCD constantly. I knew from my reading that many doctors say that the dosage for SSRIs (anti-depressant med) for OCD sufferers needs to be quite high to see results. I understood that. But when it came to my daughter, I didn't want to push high doses of anything. Turns out she has been suffering with her OCD, stress, stomach problems, and more, and she might be able to feel better with a DIFFERENT medicine and a higher dose. My daughter was nervous about switching, but is now desperate enough to give it a try. We both were so excited with the possibilities our new doctor presented, that we were near tears.
If we try something, and don't like the side-effects, then we can just stop. But if we don't try it, we will never know how much better she can really feel. So tomorrow she starts her new meds, and it will take a few weeks to see results. They will probably raise the levels again once she has been on it for a while. It may even lessen her obsessions and frequency of her rituals. That would be so exciting.
The medicines today affect the Seritonin in the brain. Obsessive Compulsive Disorder is connected with Seritonin problems, and genetically connected to other Seritonin related disorders like depression and anxiety disorders. Guess what? IBS (Irritable Bowel Syndrome) is also related to Seritonin. I never knew that. My daughter has tummy problems ALL of the time. I thought it was just the stress. Well, it is. But it may also be related to the Seritonin and IBS. Another problem that might be solved.! Wow. That would be so awesome.
I know there are combinations of medications out there for OCD sufferers. I still don't want to see my daughter have to use more medication, but I do want her to feel better and have a bright future. Is anyone close to finding a cure? Wouldn't that be amazing? After more than a year since diagnosis, going through a few doctors and a few medications, we are still learning. At least we continue to progress.
O.K. I will try to check in again soon. Take care!
Stress and OCD
Hi all. My thought today is one we hear constantly from my daughter's therapist. When we say it's been a bad week, she will ask, "What makes OCD symptoms worse?" Since she's taught us the answer, we say in unison, "Stress". She will then ask what has been happening that week.
We can usually look back and find the trigger for the worsening symptoms. Sometimes it's the scary book she has to read in English. If someone dies, or someones mother dies, forget it! Edgar Allen Poe is just creepy! It's fine for exposing kids to famous literature, but for my daughter it just sends her into double duty for her rituals. Other stresses we have experienced have been moving, sick relatives, friend and boyfriend problems. Hmmm. What else? I guess you get the idea.
So what do we do when we realize it's stress, and want some relief? The first step is to pinpoint the stress and acknowledge it. The next step is try to reduce some stressors that we can control. As parents, we sometimes have to make concessions. If things are really bad, then the messy room isn't something we will discuss at that time. She's basically a good kid, so we don't have too many issues with her.
She has learned to try to identify the trigger, identify the compulsions, and try to take control. It doesn't always work, but she is trying. We have also noticed that if she isn't doing her "homework" for the therapist, then the stress affects her more.
So what does her treatment entail. I'll get into that a little more next time.
My other sweetie has to go to bed.
Mistakes Can Be Fatal
Hi everyone. It's been a busy Holiday week. I have to say my daughter is doing pretty well. We took her off her medicine for ADHD (Strattera). It was making her much worse. We put her on another medicine, low dose, and so far so good.
So what kind of OCD does she have? She has symptoms of a few different kinds, including hoarding. The main one that she gets treatment for is called Scrupulosity. This means she has an exaggerated sense of morality, right and wrong, or good and evil. She fears that a tiny indescretion on her part makes her "bad". She fears doing something wrong and causing a terrible tragedy in her family, school, or other part of her world. She is extremely afraid of anything that could be considered evil.
Imagine feeling responsible for the safety of all those you love. The only way to keep them safe is to repeat chants over and over. "No one will die. No evil will get into my house. Nothing bad will happen to me and my family". And then, if you slip and say something wrong, then you have to hurry and double your efforts to keep everyone safe. She might say something like "I hate when you do that." She heard somewhere years ago that the word hate means that you wish they were dead. That is "bad" to say that you wish someone dead. If she says something bad, then bad things will happen. It's a scary way to live. It's also exhausting to continue to reassure her.
If you have had any treatment for OCD, then you know as a parent I need to limit my reassurances so she can learn to deal with her issues, instead of using me as a ritual. It is so hard to watch her suffer and then not just comfort her. We have progressed quite far in that area.
She can finally say she is mad at someone. It doesn't happen very often, but she has been able to do that. She is very afraid if she thinks or wishes something, then it will happen. If she says "I wish we would have a snowday tomorrow", then it might happen. You would think that would be a good thought. Any wish is bad for her, because a wish could change the way things were SUPPOSED to happen. I tell her that she doesn't have that much power. I try to joke and say, if you have that kind of power, can you wish for a million dollars for me? She doesn't see much humor in her suffering.
One thought for the day. One thing that really helped her was from her first therapist. She didn't really help with the OCD, but she had a few good insights. If anyone out there suffers with OCD and fears evil, they will appreciate this. My daughter was afraid of evil, and felt surrounded by it. Her therapist told her to think of evil like the state of Rhode Island, and good is the rest of the world. Evil may be out there, but the good outweighs it. I don't know if that means anything to you, but it helped her to put things in better perspective.
I don't have OCD, and even though there are bad people in the world, I don't worry about evil. I do worry about how cruel people can be to those suffering from mental illnesses and other handicaps. They aren't evil, but ignorance and arrogance can still be hurtful.
Well, I'm tired from my Black Friday shopping, so I'd better go. I'd love to hear from anyone with OCD, or a child with OCD. There are no support groups in our area. If you live in a bigger city, you can probably find one near you.
OCD and ADHD Go Hand-in-Hand -11/18/06
So you've heard a little of my story, and if you are reading this, maybe you or someone you know has their own OCD story. It was easy to think of my next post for this, because we just went to the doctor again today to work on Sarah's ADHD. Did you know that there are a few other conditions that are commonly found in people who also have OCD? The conditions are co-morbid, which means that they exist simultaneously with and usually independently of OCD. In simple terms, in many people with OCD also have other disorders, but they have separate symptoms and effects.
Common Disorders in OCD Patients
- Anxiety Disorders
- Skin Picking
- Learning disorders
- Disruptive disorders
- Trichotillomania (compulsive hair pulling)
Thankfully, people with OCD do not get ALL these conditions. Whew! That would be scary. But since OCD is already time consuming and stressful, adding something else to the equation doesn't seem fair. Obsessive Compulsive Disorder gets worse from stress, and these other disorders cause stress. GREAT! So, before I tell you more about us, here is my message for the day. Make sure to have ALL issues diagnosed and treated.
Yes, my daughter has other disorders along with her OCD. She has ADHD. Which means she is anxious, scared, and because of ADHD, she is HYPER. She isn't out of control and she doesn't have disruptive behavior. She just has trouble concentrating, following directions, and being organized. When she gets excited she jumps around and talks fast. She was able to function in school and was well behaved so it wasn't a big problem. Then this year she started high school.
Sarah's friends are starting to mature and settle down. It's not middle school anymore. All of a sudden her excitement, jumping up and down, and fast talking is starting to irritate those around her. She can see it, but she can't control it. She comes home from school saying how another person said she was annoying. Yesterday it was a good friend. This is very traumatic for a 14 year old hormonal young woman. She is so intelligent, she can't figure out why she can't solve this problem. So we are finally seeking help through medicine.
I hadn't wanted to add another medicine to the mix. I didn't want anything new that might make her symptoms worse. It was Sarah that begged to try something. She works hard to fight her OCD, and if she can do anything to improve the control she has over her own life, she wants to do it. I searched for a doctor who was familiar with OCD and ADHD and their medications. Unfortunately, we live in a world where insurance controls our choices. I had to settle for her pediatrician, and she is wonderful, but not experience with OCD.
We started with Stratera, but that didn't work for her. It did help her be less hyper. It made her so exhausted she never felt good enough to jump around. She started having depressive and self-destructive thoughts. She would have uncontrolled crying jags. This was TOTALLY new. It took my husbands insight to point out how much worse she had become since going on the new medicine.
Her OCD got worse, and it was harder for her to work on it.
We are starting her on Ritalin at a very low dose. I will let you know how that goes.
I have so much to say about this subject I haven't even told you what kind of OCD my daughter has, or how it affects her. I promise I will tell you more in my next post. To any of you with OCD, our thoughts are with you. Keep up hope, and keep working on it.
According to http://www.medicalnewstoday.com/ , in an April 2, 2006 article:
Approximately 2 percent of U.S. adults (3.3 million people) have OCD, the fourth most prevalent mental health disorder in the United States.