Therapy? Medicate? What to expect!

I know many of you are as confused as I was and still am about therapy and medications for OCD. What works for some does not work for everyone! Let's keep that in mind as we move forward! Let me just share our experience a little, then I will share many options, and ideas of how to find a professional to work with, as well as what medications are used to treat OCD.

 First meet Selena, she is our granddaughter, but through adoption she is our daughter. We love her to death just like you love your children! When did I first recognize something wrong? From day one! Selena did not like being swaddled, she couldn't stand formula even dripping on her hand. She was not colic, but these things just drove her into a screaming fit. When we started solid food, she preferred vegetables over fruits, she would never even think of touching her food with her hands! She detested shoes on her feet and preferred to go barefoot, yet she was early to learn to read, she taught herself by age 3. It really wasn't until we moved from a tiny house to the large house we live in now before OCD and it's true symptoms even appeared. She did not take well to the change, and still will cry sometimes if we drive by the old house. (right now I need to let you all know she is also on the Autism Spectrum, but that is besides the point of OCD)

Her OCD did not make sense, to us. She showed signs of not liking germs, but yet she did a lot of things that we found just discussing. She couldn't go into the barn, because of the dirt, yet she was thrilled to play in the dirt, and watch all sorts of insects and even hold them. Her diet consisted of only a few dishes, and non of her food could touch, nor any new food could be on the same plate, she always had two plates. You didn't dare enter her space, try to help her cut her meat unless she asked, couldn't help brush her teeth, the list can go on and on.

At a loss as to what to do, we went to seek help, the first psychiatrist we seen was all about medication. We were not sold on that idea so we kept seeking. The second psychiatrist misdiagnosed her, which again we did not agree on and searched for yet another one. The one we have now is excellent, I can't even imagine having him not treat her. He suggested psychologists to work with Selena. The first one had her office in a house, because of that Selena's OCD could not except that. She couldn't go to see this person, because she was suppose to have an office not a house. The second psychologist was more concerned with behavior then the OCD. The third depended totally upon dietary changes, WAIT we were already living on a very restricted diet, how could I restrict it even more? The fourth made Selena feel less then normal. We turned to alternative therapies. I am not stating these things to make any of you feel that therapy will not work, I am just saying that you have to sometimes go on a search until you find the right therapy for your child! Don't ever be afraid to question the therapist, their personality, their method, and how your child might feel.

There are different types of therapy for OCD, one of the most popular is ERP, Exposure Response Prevention. The idea with this therapy is to expose the child with the things that create the OCD, and address the behaviors or rituals and try to find better ways of responding. This may work for some, and at first you might see escalated symptoms or behavioral issues. Some do not respond to this at all. Keep in mind not every treatment is for everyone. Also I believe the therapist MUST be a fit.

Some like to use the book, "Talking Back to OCD" which is a combination of ERP but also tries to explain to the child that OCD is a monster talking to them. This also takes in dietary changes. Depending upon the child this is successful! The child just has to know that monsters are not real and not everything is a monster! We tried this but everything turned into a monster, we had to finally line all the monsters up and kick them out the door and demand that they NOT come back.

For us most traditional therapies made Selena feel "Not Normal!" Though I know many who go through therapy with great success! Again not every therapy model or therapist fits every child!

Medications to treat OCD mostly consist of antidepressants, mild antidepressants given at small doses in hopes to treat the anxiety. I am very anti medication, and found that most of these medications made the OCD worse. Probably in our case due to the Autism we had going on too. Do these medications make our child a zombie? I have to say in mild doses probably not. I don't know about you but I myself have had to take antidepressants before, they didn't make me feel like a zombie. Is it something we want to give our children? That is a personal decision.

Now I want to talk a bit about non conventional therapies. I began my research in this area when I felt I was running into brick walls. Keep in mind we are treating not only OCD but Autism, but I have discovered allowing the child to do something they love or are passionate about with a person who has an understanding of OCD is very effective. As I mentioned earlier, my child had a hard time going into a barn, yet she loved horses. We found a person very passionate in horse whispering and began horse riding lessons. She had to enter the barn, but through her desire to learn to ride horses, and communicating with the horses she now can enter a barn. Not only that it built her confidence and has helped her to communicate with us on the other aspects in her life that bothers her. Any activity that your child enjoys, swimming, martial arts, so long as the teacher is able to understand your child's difficulties and has a willingness to work with you, can be an alternative therapy. Keep in mind they can be expensive and because they are alternative they are not covered under insurance.

I want to emphasize that we all get to a point we feel like we are at a loss, how do we help our child. It happens through trial and error. Sometimes somebody else might know of something that has worked for them, that is a perfect fit for our child. I do not want to create a community like some where all we hear is the negatives, while these are real, but we can ask positive questions, and receive positive support. I will not address all questions myself, I am not a mental health professional, I am first and foremost a mom just like all of you who have walked the same walk. I am more then willing to post to the group questions you ask and encourage others to share their experiences.

To Medicate or Not

I often get asked about medication for OCD in our children. First let me say the medications mostly used for OCD are anti depressants. I am not for medicating every child for every thing there is, but I am also not opposed to medication when it can help.

We did choose to medicate, before I go any further let me explain that our daughter does not just suffer from OCD but is also on the Autistic Spectrum. We tried the anti depressants with no real relief. We now treat the Autism and that has helped her a lot.

My point being is never let anyone pressure you into giving your child medication, you do not have to unless you feel it is necessary. We chose to look at medications because our daughter was physically making her self ill. She broke out with stress hives, would retain her bowels and have constipation, was this due to OCD or Autism? I believe it border lined both.

It is not an easy journey to move into meds, my advice is to have them start at the lowest dose possible and move up from there. Note any side affects you are seeing. Weigh it all out.

I also know many swear by diet, many can control OCD and behaviors by using dietary changes. The one that comes to mind is to cut out all Gluten. I emphasize though if this is something you are considering, everyone has to be on the same diet. I remember when my Sister tried to put her son on a diet thinking he had ADHD, but did not apply it to the whole family, that kid was worse then ever before, was it from the diet? No it was because it was not fare for him to not be able to eat what everyone else was eating. When ever we put our young children on a restricted diet it is very important as a family to support that decision by doing it as a family. Children do not understand.

So do we medicate or not? This is not an answer I can answer, it is a difficult decision and one that I will not support one way or the other. That is not to say I will not support you in your decision but I feel very strongly it is a decision that needs to be made by you as the parent. Never lose control of your role as a parent, you have to stand strong to what you feel is right for your child. Never ever, think just because you try medication and discover it is not right, that you do not have the right to stop it all. Never loose sight of the role you play in knowing your child.

OCD in a Nutshell

For those of us caring for our children who are suffering from OCD, our days can be filled with frustration, anger, sadness, to joy. The emotions we feel through the day can swing like a pendulum. We ask constantly what can I do to help my child, what can I do to relieve their pain, to What did I do to cause this? Let me say first and foremost you did nothing to cause this in your child. The mind is a very delicate and confusing wired organ. I believe we all have a form of OCD to an extent, if you stop and look at yourself you can find one thing that just drives you nuts, it is just gross, or if it isn’t done a certain way it just isn’t right. As I look at myself I can count the times that OCD as even affected me on a daily basis. Depending on each person our reactions to this OCD is different. Some just fix the problem and go on with their days, others, may have rituals, from hand washing, to counting trying to make the Obsession better. Why a person reacts the way they do, is complex and a big part of figuring this picture out.

Treatments for OCD can vary from psychologist to psychologist. I know I have talked in a post here about Talking Back To OCD. Some will try diet to treat OCD, while others will use an approach of making the person face their obsessions in an attempt to help them see it is nothing to obsess over. No single treatment is right for every single person. My advice is to go into all treatment with an open mind but also be skeptical, if you are not sure you like what you are seeing do not be afraid to speak up, ask questions or seek a second opinion.


So what have we done? I can not and will not say that our travels with OCD is cured or healed or great, rosy or non bothersome! However, we for the most part understand the triggers now, we understand and know what to expect, the reaction, or the compulsion. We also know before hand from how anxious our daughter is. We do a lot of talking about feelings, she has been able to move from physically becoming ill, to expressing her feelings. We talk about normal and non normal feelings. We try very hard to put into perspective for her that what she might be feeling is a normal feeling. We have even made up words to express our feelings, because with OCD sometimes what they are feeling are numerous feelings at one time. One of our favorite words is nervousanxious, this will be used to express how she feels about trying something new. We always let her know that this is a normal feeling for all of us. It is normal to feel anxious as well as nervous over certain things.


We also refuse to let OCD run our lives. We have very strict rules about things. Sometimes we might ask her to do something that will cause anxiety we realize OCD might take over. At the first sign of argument or her defying what we want, instead of putting her into time out, we put ourselves in time out. We refuse to talk to her, look at her, or listen to her until she calms herself down and does what we expect. Many times she will come out of these periods with hugs, kisses and an acknowledgement that she is the one that deserved the time out. Just because this works for us it doesn’t mean it will work for you, but it is something to think about. Sometimes how we react to their reaction can make it better or worse.


I am sure you all have wondered how do we educate others about our children? How do we get them to understand their OCD? I go into every meeting with a new health care provider, with as much information I can give them from the get go. If I do not feel they are getting it, I go back into the discussion again. Most of what I say is with my child hearing. I might have to make several phone calls, some providers get it and some don’t, those who don’t we just leave and search someone who will. It is wearing and sometimes makes you feel very tired, but I am a firm believer that anyone who provides care for my child better understand and except nobody knows her better then me. I have high expectations of providers, and will only tolerate so many mistakes.

Remember OCD is anxiety driven. We all have felt anxiety, some worse then others, we just need to remember these are children we are dealing with, they are not going to or should they be expected to know how to deal with such intense anxiety. We need to model for them, do yoga with them, breath with them, let them talk, listen and never forget to ask, how do you feel?

What is OCD

I know it has been a long time since I wrote here. We have been busy learning a lot about OCD, a lot about our daughter. Our OCD days are fewer and less extreme. Why? Well once we realized OCD was really a byproduct of stress, it became more manageable. We do have high OCD times, but by charting the stress in our daughter’s life we can predict when the OCD will be worse. Just this week we had a high OCD week, why? She was stressing over getting her retainer. If we can manage the stress in her life we can manage the OCD. No, not all of it, just like me there are things that just gross me out, things that I just can’t live with, that is OCD!

We can not avoid all stress for her, but we can help her manage it. We talk it through, when we recognize it. We acknowledge her feelings, her desire to grow up but yet her fears about growing up. We allow her to take ownership of her feelings.

For a child who couldn’t hardly stand to walk into a barn, she is now working with horses, and riding. We had to convince her that the outcome was worth her worry of dirt under her feat, or the smell of the barn, what ever it was that was causing her OCD. I guess I am saying do not give up it is possible. OCD is really only stress, once you can understand that stress the better you can help your child or yourself. No, it is not easy but it can happen.
It takes time, patience, and the willingness to try to listen and understand.

The Many Faces of OCD

As we move forward in our reading and working with the psychologist we are beginning to see so much more about what makes Sunshine tick. We have identified so many of her OCD monsters, yes, that is right the term used is monster when identifying the different voices that tell her things are wrong. She is then suppose to give them silly names. It is this area though that I am keeping private, only to her and us, these names make sense to her, and carry meaning that even we do not always understand, but since that is how she identifies them so we know who is speaking at any given time is all that matters. For those who do not have OCD can you imagine having this going on in your world all the time?

Just think of it this way, the more we play the game of allowing her rituals to control her comfort level, the more she feeds the monsters and the larger they become. The other term, I believe I mentioned in my previous post is that these monsters create what we call brain hiccups. In a healthy brain we might have scary thoughts that come through our mind, but we can easily dismiss these thoughts by identifying them as just that a thought, nothing real, but in OCD the brain doesn’t read them that way, our brain:

Then we perform something either mentally or outward that attempts to assure that this thought does not come true. A good example is that Sunshine is given a worried thought that something bad will happen to papa or myself when we are ready to leave, so her hiccup tells her to delay our leaving in any manner she can think of. Over time this becomes a ritual, especially when we do not allow her to perform her ritual, her world suddenly falls apart.

A few of the monsters we have identified minus their nicknames and too much information is:

1. She has a monster that tells her she can not learn and sits on her desk making school work impossible to do.
2. She can only have 6 of anything, anymore then that is too many, including the number of people in a room.
3. Everything is dirty unless she identifies a dishwasher or observes how it is cleaned.

There are many more, but some are very private in their context so I will not be identifying those.

One way that she can battle these is to blow them away. She has developed her own imaginary key that locks the back door, when the monsters start in, she asks one of us on her team to help her blow them out the back door, then she uses her key to lock them out. The idea here is for her to gain control and tell them to shut up, go away and to leave her alone.

She also learned a very valuable lesson, in that now that we are fighting back, these monsters are playing huge games with her by telling her all sorts of lies, such as “I will behave and be your best friend.” She is learning that there is no way she can trust them, and no way they can be her best friend. We still have a long journey ahead of us, but it is a journey worth going down just knowing that Sunshine is beginning to understand, we are beginning to understand, and it is fun to watch her gain control. It seems silly at times, but hey if it is going to work and help her then that is what we will do.

After her session she came home and got to play Queen the rest of the evening. Just so you know we will not participate in Halloween in the traditional manner, but we will have fun as Queen Sunshine with a lot of fun activities.

Why Did We Switch Psychologists?

Yes, you are reading the title correctly. We did switch psychologists. We personally liked Dr. Callies, his demeanor, caring personality, and knowledge of children was all wonderful, but when it came to OCD, he lacked something. We didn’t understand it ourselves at first, but we also knew that this just wasn’t the fit for our family we were looking for.  After receiving numerous recommendations, trying to search out their qualifications on the Internet, and seeing everything that Dr. Callies was asking us to do that seemed to making our home a complete war zone, and leaving Sunshine spinning from one panic attack to the next, I finally just picked up the phone and made one simple phone call. A call that I am so glad I made.

We met with Ms Hicks on Wednesday. While we were not suppose to bring Sunshine to this appointment I had no choice but to take her. Ms Hicks at first offered to set her up with some toys in the waiting room, but I felt that would not be quite a fit for her and assured Ms Hicks it would be fine to have her in the office. With Sunshine sat up with a tub of sand and a bin of dinosaurs we set out to discuss why we were there. I have to first of say that for the first time in a while I was observing the Sunshine that I am use to taking places. She engrossed herself into the toys before her and never once moved nor interrupted us.

It was explained to me that one of the reason we were having problems with the things Dr. Callies wanted us to do was due to 2 factors, the first being that he specializes in behavior therapy, and the second, to take that approach is actually working backwards in the OCD cycle. She then asked that we read Talking Back To OCD by John S. March, MD. The book starts out by giving a complete but very understandable look at what OCD is and breaks it down so that even the child has more of an understanding. My favorite part was how the book pointed out that OCD is truly a brain illness, it went on to talk about how it does make a child feel like they are so different from their peers, creating the idea of shutting themselves off from social events. Did you know that 1 in 200 children suffer from OCD, this means that your child isn’t the only one in their school, or probably in their classroom dealing with OCD. While OCD takes on many forms, sometimes two people with OCD will be so opposite that they actually clash, and their seems like there is no way to get these two people to get along, no matter how much they tend to like each other.

What was Sunshine’s favorite part about the book so far? She thought it was quite funny when the book explained OCD as a hiccup of the brain. She felt her head and said it wasn’t jumping up and down like a hiccup. Pretty soon though she did tell me her brain hiccupped. Great for some laughs to lighten the evening up from all the tension we had been feeling in our home.

Stay tuned I will be sharing more of the book as we read on, as well as what and how we are using this book in therapy.

 

Just a cute little picture of Sunshine and her very first corsage, given to her from the neighbors. She wore this corsage all afternoon out playing while Papa mowed the grass. After hours of playing she came running in crying as her corsage had began to fall apart, I couldn’t believe it had lasted as long as it did. With a little reassurance and then showing her that the neighbor, bless her heart had given Sunshine two of these, so yes, we kept the other and pressed it. She will always have her first corsage to remember all the fun she had, and how pretty she felt wearing it though it was worn on a sweat shirt, out playing in the dirt and hay, feeding the horse, riding her bike, and so much more. Now wouldn’t it had been hilarious if the horse would have reached over the fence in an attempt to eat this corsage? 

Sometimes You Just Have To Listen

As we have been working with some of the techniques that Sunshine’s Psychologist suggested to us to try (you can rediscover some of these here) we began to realize that many of his ideas just seemed to spin Sunshine from one panic attack to the next until she got to the point she was giving up and not even trying. I can’t say I blame her since everything just seemed to be so based on her behaviors and truly not addressing her anxieties. One thing I have to say is that Sunshine is a well behaved child so long as her anxiety level is low or she stays calm. We finally just backed off quite a bit from what he wanted us to do and began to ask Sunshine what she felt would help her.

Last night as I was tucking her in bed she told me that she wanted to make an anxiety chart. I asked her what she imagined this chart to look like. She explained it to me by saying, “So many times my anxieties run at 130, at church they are mostly at 110, but I need them to be empty or at 0.” The thought that came to my mind was a thermometer. I promised her that we would put something together. This morning we set out to do just that. (I hope to get some pictures of our chart for you soon, but wouldn’t you know it my camera batteries are dead.)

To make this chart have more meaning I created a journal for Sunshine to write the information she was gathering from her chart. This has proven to be very interesting. She woke up too early this morning and was very crabby, I asked her what she would rate her anxiety level at. She answered with a 40. I drew a small thermometer on the page and we marked it with a value of 40. Then she had to answer several questions: 1. Why do you feel your anxieties are at a 40? 2. What might bring your anxieties down? 3. How do you feel with your anxieties at this level, happy, sad, mad, or anxious? 4. How is this affecting your behaviors? After all the questions were answered and the data entered into her journal we were ready to move on to taking action to improve her overall anxiety level. Since she decided her anxieties were up due to lack of sleep, she chose to take a short nap or rest to bring her anxiety level down. We did just that took a short rest. When we got up we again made a new journal entry with all the same steps above. At one point she got in trouble, so I made her enter this data in her journal. We then ended our day by re-examining where she was on her chart before bed, as well as looking back over the day. At the bottom of the page I wrote two sentences describing her BEST moments or accomplishments of the day.

I know this is kind of hard to follow as I try to explain it without pictures. I will be doing another post down the road here complete with pictures as to our progress. I truly believe sometimes the answers lay inside our child, they know how they want to feel, as well as have great ideas to make this happen, but sometimes we just need to stop and listen and allow them to express themselves. I truly believe that Sunshine learned a lot about her own anxieties today, and she definitely took away a sense of empowerment over them or ownership to some of the reasons they maybe occurring, and an understanding that she does have the power to do something about them.