Tired of OCD running MY life....

[dcmom]

I am planning an update on my girls soon, both on steroids now, so want to see where it all ends up when the rx is done....

 

But in the meantime, I need some help and advice.

 

I am not patting myself on the back, but, I am a VERY patient mother. I have been there for my girls every second of the last year plus, remaining calm, positive and encouraging. I don't yell, criticize or over react. I know they are and have been sick, and are suffering....

 

But the last few days, I am starting to lose it. My patience (I don' t know why) feels like it has run out. I am tired of ocd running MY life.

 

Julia, age 6, is actually doing really well.

 

Caroline, age 9, who was the second one to be diagnosed it the one i am losing patience with. She had pex six weeks ago, and improved tremendously, but the ocd is still there. To be honest, I can't help but feel she is just not fighting for herself. She also has separation anxiety- so since February- she sleeps with my (in dh and my bed) every night. So- it is lights off for ME by 9pm every night. She is very demanding about it. I can't read, or use my Iphone- or she refuses to try to sleep. My husband and I haven't had more then a couple of minutes (usually on the phone) a day to have adult conversation. She can't (because of ocd) have her sister in bed with us- this has all caused Julia to have some night time issues. Last night Julia had a nightmare, and came in. I let her get in bed. This morning when Caroline woke up she was furious- demanding Julia leave, calling her names, and flicking her on the head.

 

So, this is just one example of her issues. There are others. When something is bothering her (ocd/anxiety) she is mean; mean to me, and mean to Julia.

 

I understand that Caroline has ocd, and I am trying to be patient. But maybe I am too patient. I don't see her putting an effort in to getting better. She is seeing a therapist, and they are working on stuff, but they started with the easiest first. She seems too much like she is just going through the motions, not really trying. Not motivated. They have been working on the same issue (germs - touching things) for two weeks.

 

Am I enabling her? Should I allow her to let her life be run by ocd, but refuse to let the rest of the family's life be run that way? Can tough love be helpful? I feel like now is the time I need to step up and be in charge, NOT ocd.

 

Eating out has been an issue for her. It was something the therapist wanted her to work on, but she suggested just eat a piece of bread- I was thinking- a piece of bread- this weekend we HAD to be out at lunchtime. And she just did it- she ordered a sandwich and ate the whole thing- only slightly nervous. I think the grip of ocd has loosened- but her mode of operation is avoidance (it always has been even prior to pandas). It is easier for her to avoid doing something that is hard- but in the end, eating out wasn't even that hard (I could tell because she was having a good time- not on edge).

 

This morning- I was in a mood- so I started talking to her about ballet (another ocd thing), and how I found a program in NJ during the summer. I just talked like she was doing it- no options, and I swear I could sense part of her accepting it, even though she said she didn't want to do it.

 

So help- when do I say enough- I need my evenings back, DH and I need our bed back, and SHE NEEDS her LIFE back. I need ME to be in charge, not ocd.

 

Sorry for the rant- please offer suggestions...

[fuelforall]

Is tough love okay sometimes?

 

 

Answer: only if it works

 

Sorry to be so unhelpful. We are getting nowhere with my son and tough love never works, it just makes him scream and rage.

[Joan Pandas Mom]

We have been to 3 different 2 week intensive outpatient OCD treatment facilities over the past 6 years. They work great, but only if the patient continues with the work at home, which I have NEVER been able to get my son to do. It didn't work in Dec. of 2009, only because my son was too sick with PANDAS to do the work. The first thing they told me at these very, very good OCD/anxiety treatment facilities was to STOP helping/enabling with OCD. OCD is very bossy. When we first went in 2007, my son was completely incapacitated with OCD and we found out later PANDAS. He wasn't even able to dress himself. He was 12 at the time. They told me not to help him with any rituals. We ended up going to treatment the next morning with my son in his boxers in downtown LA! He did get much better after 14 days there. OCD is so stubborn. We are going back for 1 week booster about 8 weeks post IVIG. I would say if your D is doing pretty good PANDAS wise, maybe stat to have her do more on her own. It will take a while, but she will get there.

[tired mom]

I am planning an update on my girls soon, both on steroids now, so want to see where it all ends up when the rx is done....

 

But in the meantime, I need some help and advice.

 

I am not patting myself on the back, but, I am a VERY patient mother. I have been there for my girls every second of the last year plus, remaining calm, positive and encouraging. I don't yell, criticize or over react. I know they are and have been sick, and are suffering....

 

But the last few days, I am starting to lose it. My patience (I don' t know why) feels like it has run out. I am tired of ocd running MY life.

 

Julia, age 6, is actually doing really well.

 

Caroline, age 9, who was the second one to be diagnosed it the one i am losing patience with. She had pex six weeks ago, and improved tremendously, but the ocd is still there. To be honest, I can't help but feel she is just not fighting for herself. She also has separation anxiety- so since February- she sleeps with my (in dh and my bed) every night. So- it is lights off for ME by 9pm every night. She is very demanding about it. I can't read, or use my Iphone- or she refuses to try to sleep. My husband and I haven't had more then a couple of minutes (usually on the phone) a day to have adult conversation. She can't (because of ocd) have her sister in bed with us- this has all caused Julia to have some night time issues. Last night Julia had a nightmare, and came in. I let her get in bed. This morning when Caroline woke up she was furious- demanding Julia leave, calling her names, and flicking her on the head.

 

So, this is just one example of her issues. There are others. When something is bothering her (ocd/anxiety) she is mean; mean to me, and mean to Julia.

 

I understand that Caroline has ocd, and I am trying to be patient. But maybe I am too patient. I don't see her putting an effort in to getting better. She is seeing a therapist, and they are working on stuff, but they started with the easiest first. She seems too much like she is just going through the motions, not really trying. Not motivated. They have been working on the same issue (germs - touching things) for two weeks.

 

Am I enabling her? Should I allow her to let her life be run by ocd, but refuse to let the rest of the family's life be run that way? Can tough love be helpful? I feel like now is the time I need to step up and be in charge, NOT ocd.

 

Eating out has been an issue for her. It was something the therapist wanted her to work on, but she suggested just eat a piece of bread- I was thinking- a piece of bread- this weekend we HAD to be out at lunchtime. And she just did it- she ordered a sandwich and ate the whole thing- only slightly nervous. I think the grip of ocd has loosened- but her mode of operation is avoidance (it always has been even prior to pandas). It is easier for her to avoid doing something that is hard- but in the end, eating out wasn't even that hard (I could tell because she was having a good time- not on edge).

 

This morning- I was in a mood- so I started talking to her about ballet (another ocd thing), and how I found a program in NJ during the summer. I just talked like she was doing it- no options, and I swear I could sense part of her accepting it, even though she said she didn't want to do it.

 

So help- when do I say enough- I need my evenings back, DH and I need our bed back, and SHE NEEDS her LIFE back. I need ME to be in charge, not ocd.

 

Sorry for the rant- please offer suggestions...

I feel for you as your story is like so many of us whose children suffer from OCD. I can't tell you how many times I have had to put things back into perspective,take a step back and remind myself that no matter how angry I get or how hard I scream I cannot break what is happening to my dds mind at that moment. I do not think of myself as an enabler but rather as the peacemaker. I think we all at some point just reach our breaking moments. I hope as the day goes on things will improve for you. One suggestion is maybe someone can watch your girls overnight this weekend and you and your husband can go out and spend some quality alone time together. Honestly, it does a world of good and you come back supercharged for a few days. Good Luck!!

Edited April 22, 2010 by tired mom

[sf_mom]

I think you need to do WHATEVER you need to do to get by while your girls are recovering. You have plenty of time to institute rules when they are 100% recovered. As our son has gotten better, it is very obvious that his understanding and willingness to accept rules and consequences has drastically changed. HANG IN THERE. AND, we all occasionally lose it.

 

This illness has PERSONALLY TURNED my life up side down and I struggle each day to get work done. Thankfully, my husband is not as disrupted emotionally and continues to forge ahead...... He has become my rock of reason.

 

I've decided there are three phases in the recovery: getting your child back to 100% pre-illness, keeping your entire family well after recovery, parent healing.

 

-Wendy

Edited April 22, 2010 by SF Mom

[thereishope]

That sentence sounds like you've reached a turning point. I had that with my son when the OCD just wouldn't go away. That's when I started to view his PANDAS OCD different than his residual OCD. Once I really got that mind set that we just couldn't wait any more and I just couldn't be a slave to his OCD anymore, did we finally make strides.

 

 

So help- when do I say enough- I need my evenings back, DH and I need our bed back, and SHE NEEDS her LIFE back. I need ME to be in charge, not ocd.

[Megs_Mom]

I agree with Vickie - to me, there are 2 parts to this illness - medical and psychological. Maybe that is because my child was sick for so long - it does seem that some kids just recover with medical treatment. Maybe it's because she was so severe. But for us, we have had to work on it - after medical treatment, it became MUCH easier, but it was still work. I think her skills were just so good at that point, that this phase was pretty easy.

 

We did not call it tough love, but we were pretty tough and encouraging. ERP therapy was a daily, very structured part of our life. We had very very intense reward plans laid out with tiny tiny baby steps & lots of praise. We called it courage work with Meg. We did not have punishments, but did have "natural consequenses" if she did not do the work. We rewarded effort, not just success, and if she really tried, we did not have a natural consequense.

 

Personally, I do think there is a time - and only a parent can know when that time is - that they need to learn to fight back. ONLY if they are medically treated and if they are taught tools to fight back, and are appropriately rewarded and encouraged. And what child would not learn some bad habits through this really traumatic time! They cope as best they can, and sometimes that coping -especially for child that naturally avoids - can become habit. Heck, I'd be terrified if my life was turned around like this and would need help getting back to normal. (Actually, that is a true statement, even as a parent of a child with PANDAS, and I did seek assistance in how to cope, plan, accept, get back to normal, etc).

 

OCD is a horrible, life disrupting, debilitating illness. I am so passionate about this in part because I fear it's return. Above everything else, I want our daughter to have the skills to know how to reach out - for both medical and psychological help - at any time in her life that she may need to do so. Honestly, I think about when she has a child, what if she has inflamation or infection - will that cause this again? I know many adult women who had pretty severe OCD onsets after childbirth, and I feel like this is a very similar issue to PANDAS, inflamation leading to an open BB barrier. So we are passionate about teaching her life skills that may be the most important ones she will ever have.

 

I think you know when it is time to ramp it up. Leave it too long, and as a parent you become quite frustrated. But having a plan really helps - and realistic timeline expectations. It's ok to start to take life back.

[dcmom]

Thanks for all of the encouraging words... even though things are really good at my house, compared to how they have been, I am at a little bit of a low point. Maybe it is because it is the first time I have had a few days (when the kids are at school) to myself in a long time. Thankfully, Caroline is really doing well medically. I think my frustration is in that I feel she is not trying to fight the ocd. I understand what she has been through, I can't imagine what it was like, we let all of the rules go when she was sick, and spent every minute calming and caring for her- happily. It is not fair she had to go through this, and it is not fair she has to fight just to be able to do ordinary things- but I can't take that away, I can't make that better. But, I am trying to figure out how to motivate her to want to try to take her life back. I am afraid if I don't push her, if the therapist doesn't push her, and she doesn't push herself, that she won't continue to make progress. The ocd that is left, may be residual. She mostly tries to avoid uncomfortable situations, but, when it turns out she is pushed into them she does well- so I think it is more the memory of the crippling ocd/fear, than the fact that it is still there. I am really good at cuddling them up, and making everything better in the bad times- but I do think she is past that, and I don't have so much practice at being really firm.

 

fuel for all- I know what you mean about tough love making things worse- it NEVER worked for my little one. It certainly didn't work for Caroline at her worst, but this morning- when I was losing my patience and conveying that, she did respond. You know how kids really do like boundaries? I think that is what was going on, maybe she needs to know that we won't accept that this is how things will stay for her.

 

tiredmom- thanks- your post was cute- but Caroline can't sleep without me, and had a REALLY hard time staying with my mom babysitting in the afternoon last weekend- there is NO way of an overnight or even an out to dinner at this point

 

Vickie and Meg's mom- I think maybe we are at a turning point, and maybe I sense it, and therein lies my frustration. Hopefully we will see the big strides as well!

 

SFMom- I totally know how you feel about having difficulty getting work done. When the kids have a bad day, it just zaps my energy for the next few days. It would be an understatement to say pandas has changed ALL of our lives. We are in the process about moving back to our hometown of NJ- but I FEEL so different, I feel like it will be really hard to go back to my old life- because so much has changed. My values, my direction, everything has changed, and really the only people that know or understand that are those on the forum, and my parents (who have been an unbelievable support).

[Debbie1]

I am sorry to hear you are still struggling with some issues post PEX and hope you get some relief soon.

 

One of my two PANDAS kids has OCD, the other is primarily tics. We have not yet taken my son to a therapist to work on his OCD, we have only addressed it only from a medical standpoint to date (mostly due to time constraints). Although if behaviors continue post IVIG (he is on day 2 of IVIG as I write this), we will explore it.

 

So while my opinion is not based on having tackled this through therapy, we have had to deal with it as well. I strongly feel that your sanity, and the sanity of other family members is crucial. When the OCD behaviors have gotten to you or another family member enough, it is time to take action.

 

We have had sleep issues, but have never let my son sleep in our room. I will rest with him for several minutes in his own room and then check on him in increments - first I tell him that I will check on him in two minutes, next three minutes, then 5 minutes, etc. until he falls asleep. He knows exactly when to expect my return. And athough it is true I am leaving him in his room alone while he is a bit fearful, I do feel he needs to learn that even when we are not right next to him, we are taking care of him and making sure he is safe.

 

When we had issues with urinary frequency and it became particularly difficult to manage in school, we arranged for the teacher to give him a certain number of passes per day (many more than a normal kids would need, but not unlimited.) Each time he left the room to go to the bathroom, he turned in a card. When he finished up the cards, he could not leave the class to go to the bathroom anymore that day. He needed to decide when he really needed to use them and when he could wait. Once we started doing this, he spent much more time in the classroom. I can't say it was easy for him, but he did need parameters.

 

He frequently feels the need to touch/tap things (and often that thing is me or another family member). Obviously, this can get irritating to the person being tapped and so we have tried to redirect him. We know he is able to control this urge around classmates, and so at home we ask him to tap the table, wall, etc. instead, or to take a step back from the person who he is tapping so he can talk to them without being in touching distance.

 

It is not easy and we try our hardest to implement these things in a loving, caring way. We all know too well that it is not just the child that is affected by PANDAS - it is the whole family - and so everyone's feelings need to be taken into account. Its a long road to recovery - and I have found that I am a better mom when I have my space and some time to myself.

 

Wishing you some relief soon.

Debbie

[forjpj]

I often wonder how many of the people who tell you not to "enable" the OCD patient have ever actually lived with one, and truly understand what it is like. Peacemaker is exactly right!! Anyway...I have done both tough love and soft love, especially before I knew what was going on, and I always end up feeling bad after the tough love. And it does often lead to increased rage, etc. Of course I wish I could always remember that little fact when I'm in a situation. Somewhere there is a fine line...

 

What I think really helped, and I'm sure it is not the most popular choice, but I had the psychiatrist put him on Paxil 10mg. I really felt he needed the help getting over the initial hump of the compulsions, and then we could build upon the different therapies with the behavioral therapies. I remember thinking he can do it, he just doesn't think he can do it!! Luckily, the smallest dosage seemed to help with that "hump" and hopefully, he won't have to be on it to much longer. I was very nervous of his reaction to SSRI's. He had had trouble with Prozac at one point. But, the psychiatrist assured me they can react differently to different SSRIs, and I decided it was worth the risk and to just watch him closely. I really do think it helped him, until he realized he could help himself, so I'm glad we did it, along with the rewarding. One thing that happened quite by accident, was my son saw a picture of himself doing one of the things he couldn't do at all, until recently, eating pancakes with sticky syrup. He saw that old pic right before bed, and woke up the next morning requesting pancakes with syrup. That was a huge turning point!

Well, sorry you are having a rough day DCMom! Thinking about you!!

[Chemar]

I think one needs to be very cautious in not driving a flare in OCD into overload and crisis when one may want to implement "tough love". As frustrating and exhausting as it is to deal with a kid who is hyperOCD, it is even worse to watch your kid go over the edge and end up in hospital and not know if maybe your reacting to them was what tipped the scales!! I speak from bitter experience from years ago when my son was in a severe tourettic OCD phase and I snapped and told him, to "stop that right now!" he looked straight at me with glazed eyes and seriously injured himself. I know it wasnt my fault, as it had been intensifying for days, and I had been more than pouring myself out to help him. But that nagging feeling of guilt remains in wondering "what if I had not gotten so upset because of my fear

 

I will forever be thankful for how my son was helped by Cognitive Behavioral Therapy and how much I learned in coping mechanisms in attending some of those sessions with him too!

 

anyways, I know all kids are different and mine was in serious crisis mode when that occurred, but you asked for suggestions and so mine is to be very very careful, nomatter how hard it is. I sure do sympathize with how you are feeling tho!

[thereishope]

Yes, know your child's limits and know when to stop pushing. I did not attempt to rid my son of all his OCD at once. It was a long process and there were times I attempted to overcome one thing and realized it just wasn't time to tackle it. I did baby steps with riddening every ritual, OCD tendency, etc.

[smartyjones]

I am not patting myself on the back, but, I am a VERY patient mother. I have been there for my girls every second of the last year plus, remaining calm, positive and encouraging. I don't yell, criticize or over react. I know they are and have been sick, and are suffering....

 

but I FEEL so different, I feel like it will be really hard to go back to my old life- because so much has changed. My values, my direction, everything has changed, and really the only people that know or understand that are those on the forum, and my parents (who have been an unbelievable support).

 

first, dcmom - i actually think you SHOULD pat yourself on the back. i find in your posts you are an EXTREMELY patient mom. it's one of the things i think about - 'i should be more patient like dcmom' b/c i am not very patient in general and especially when annoying behaviors start. i know from your posts you are extremely dedicated to your girls and to getting them well. the fact that you're asking for advice on how to proceed now is testimony to that. so, take a moment to feel pride in your attitude, preserverance and love for your girls!

 

second, you won't go back to your old life, so much has changed. you're now enjoying holland and holland is beautiful, right? this is not a path any of us would have ever chosen but it's one we've been placed on. i really do believe that there are reasons and outcomes, that perhaps will never be known to you, of how you're experiences will somehow touch other's lives for the better.

[bronxmom2]

My son will say "no" to almost everything I propose-- so I try to pick activities I believe he will enjoy, be engaged in, and learn from-- and ignore his "no" and do it anyway. He almost always has a great time and sometimes, lately, even apologizes afterward for his initial resistance! So we've developed a weird combination of flexibility and force. Of course I could never force him to do something he really did not want to do (Like audition for a play or something) but I do feel like I have a modicum of control over our lives.

[T_Mom]

DCMom--You are such a dear Mom and you have been through so much these past two years--

I understand your desire to move closer to family, especially if you have parents who have "been there" for you during this illness--what an amazing blessing!

 

I have nothing to add as far as "insights" as I find myself asking the same questions that you ask...when should the parent push-back against the OCD that our child experiences? As with Chemar's fine post, I too regret (who doesn't?!) some of my responses.

 

I know when our d had the Pandas related bout with anorexia the eating disorders counselor told ME that I would need to go "toe-to-toe" with the illness, on my daughter's behalf, if it came back. I will never forget that--

 

When she was riddled with uncontrollable OCD and mild tics 6 months later (and no anorexia) I felt the same helplessness but also a peace (which I attributed to God) that was beyond my understanding. I also knew that we were going to find the answer to what was going on--though it certainly was not clear at the time what the heck it was! I knew it because I was not going to give up. We feel our way along at times, as if in a dark cave, that's how it feels to me at times--

With Pandas I do believe that much of the behavioral response is beyond the child's control--yet we gently, carefully, need to help them, guide them as best we can -- with love and understanding.

 

I will leave this post now, and go to help that same d with her homework--

Keep on DCMom--as we all do, one day at a time--