How do you parent the OCD requests?

[lmkmip67]

I don't post alot, but read a couple of times a week. Ian was diagnosed in Sept when we went to see Dr. B. We are head to see him again tomorrow. He has had some improvement. But my basic question right now is how do you parent through the OCD requests? He is 7 1/2. Bed time is horrible. He has to have certain things said a certain way. And if they are not, he needs to start over until it is right. He has to be covered up a certain way. Again, if not done right, it has to be redone. We can only do it so much. We try to cut the number of times we say what he ask and all of that. But if we don't, the crying and tantrums set it. He freaks. He isn't violent. But he can not settle himself down. Before I knew what this was I would bargain, threaten, yell, etc. it is still hard to not lose my temper at times. It is almost 10 p.m. and he is still up there screaming because "daddy didn't cover him up right" for the 5th time. I don't know what to do. Do we give in until it is right? Do we refuse? If he screams, do we try to calm him or just ignore or punish? I have no clue what to do. Right now at this point I would say he is about 50% on a good day. His tics are all gone, but the OCD remains. He argues a lot and all of that. But the saying things over and over, like he needs us to say, "good night" then he says it, then we have to follow with "I love you" after he says it. And if it isn't right, we have to do it again, and again, and again. he gets very agitated when we don't. I can't keep doing it though, so I am not sure what the right thing to do is.

 

Lisa

[MomWithOCDSon]

Lisa, OCD is a really complex set of behaviors, and there are a number of techniques you can use that would be age appropriate with your child. That being said, none of it is a short answer. I would suggest you search the forum here for posts by Meg's Mom. This forum member has a daughter of a similar age to your son. She's become quite an expert on OCD, and she's taken the time to write some really long and detailed responses to questions like this; she's also posted a nice book/resource list for helping children with OCD.

 

What I can add personally, as a parent with a son, now almost 14, who's OCD behaviors began at the age of 6, is that if you feed it, it will only grow bigger. If you give in to your son's OCD demands and participate in it with him, the list of demands and the ferocity of them will only get bigger. It's really hard, I know, to deny your child something he so desperately seems to need, and that's why you need professional help and resources for approaching it in the best possible way.

 

Also, you didn't mention it, but your child's OCD is related to PANDAS? And he is currently being treated for the immune disorder via antibiotics, IVIG, etc.? We have found that not only did much of the OCD behaviors recede once we began antibiotics, but that our son's need to "obey" the OCD that remained relented significantly under the influence of the antibiotics.

 

Check for those Meg's Mom posts, try some books by Aureen Wagner ("Up and Down The Worry Hill"), and seek out some professional help if you can.

[laure]

Lisa,

So sorry to hear you recite my story! As I sit in a hotel room in Stamford at this moment as we have Dr. B appt tomorrow as well ( our 3rd). We go through the same thing, exactly. I lose it all of the time ( and then feel guilty), Dr. B told me the OCD would go away with antibiotics and he was right! We are at a much better place after 3 months of treatment. She tested positive using Igenex testing for lyme last month and now we have 2 new antibiotics, plus the zithromax, and they are working, sometimes literally overnight! I drink wine by the 3rd bedtime ritual request, but probably shouldn't recommend that! Mornings are almost as bad, but I drink coffee for those! What you are doing is what all of us do.... be as patient as possible, try to realize he has a sickness, and is not just trying to be difficult.

I may see you tomorrow, 10:30 is our appt. My daughter would die if I spoke publicly about her, but my thoughts are with you!

Laura

[Ozimum]

Hi Lisa,

It's great you're seeing your dr tomorrow.

When my ds was at his worst with strep (OCD, anxiety) nothing got through to him...all the reasoning in the world did not work. Nothing I did seemed to help...and feeling helpless I would then have panic attacks along with him! (My son is 16! - that has its own problems.) When he's better all the work his psychologist does with him pays off, but not when he's sick. And that's the point...these kids are sick. You'll find other fairly recent threads here which discuss just this. Hang in there.

[lmkmip67]

Lisa,

So sorry to hear you recite my story! As I sit in a hotel room in Stamford at this moment as we have Dr. B appt tomorrow as well ( our 3rd). We go through the same thing, exactly. I lose it all of the time ( and then feel guilty), Dr. B told me the OCD would go away with antibiotics and he was right! We are at a much better place after 3 months of treatment. She tested positive using Igenex testing for lyme last month and now we have 2 new antibiotics, plus the zithromax, and they are working, sometimes literally overnight! I drink wine by the 3rd bedtime ritual request, but probably shouldn't recommend that! Mornings are almost as bad, but I drink coffee for those! What you are doing is what all of us do.... be as patient as possible, try to realize he has a sickness, and is not just trying to be difficult.

I may see you tomorrow, 10:30 is our appt. My daughter would die if I spoke publicly about her, but my thoughts are with you!

Laura

 

Laura, I will be there at 11! We will very likely see you. It is also our third appointment. And yep, the wine comes out often after he goes to sleep. Only a glass, lol. But it helps to calm the nerves. And much coffee in the morning! Do you have a long drive? We are coming from MA, 2 1/2 hours.

[Tamistwins]

Hi lisa,

My son is also 7 1/2 and we have the same issues. I too would lose it after the millionth time of giving in to his demands. For the most part I learned the way he needs things done or said. It is not easy..i empathize with you. At times it seems like there is no right way to do things and a fuse blows, but for most part if its a routine to say goodnight or leave in morning I feel I need to comply. I tried the other option, yelling, threatening its the last time.... Only makes things worse. They don't mean to be this way...i feel so bad and guilty at same time.

Good luck with Dr. B,

Tami

[lmkmip67]

Lisa, OCD is a really complex set of behaviors, and there are a number of techniques you can use that would be age appropriate with your child. That being said, none of it is a short answer. I would suggest you search the forum here for posts by Meg's Mom. This forum member has a daughter of a similar age to your son. She's become quite an expert on OCD, and she's taken the time to write some really long and detailed responses to questions like this; she's also posted a nice book/resource list for helping children with OCD.

 

What I can add personally, as a parent with a son, now almost 14, who's OCD behaviors began at the age of 6, is that if you feed it, it will only grow bigger. If you give in to your son's OCD demands and participate in it with him, the list of demands and the ferocity of them will only get bigger. It's really hard, I know, to deny your child something he so desperately seems to need, and that's why you need professional help and resources for approaching it in the best possible way.

 

Also, you didn't mention it, but your child's OCD is related to PANDAS? And he is currently being treated for the immune disorder via antibiotics, IVIG, etc.? We have found that not only did much of the OCD behaviors recede once we began antibiotics, but that our son's need to "obey" the OCD that remained relented significantly under the influence of the antibiotics.

 

Check for those Meg's Mom posts, try some books by Aureen Wagner ("Up and Down The Worry Hill"), and seek out some professional help if you can.

 

Hi Nancy, Yes it is related to Pandas. We see Dr. B in CT. He is currently being treated with two antibiotics going on the 4th month.

[laure]

Lisa,

So sorry to hear you recite my story! As I sit in a hotel room in Stamford at this moment as we have Dr. B appt tomorrow as well ( our 3rd). We go through the same thing, exactly. I lose it all of the time ( and then feel guilty), Dr. B told me the OCD would go away with antibiotics and he was right! We are at a much better place after 3 months of treatment. She tested positive using Igenex testing for lyme last month and now we have 2 new antibiotics, plus the zithromax, and they are working, sometimes literally overnight! I drink wine by the 3rd bedtime ritual request, but probably shouldn't recommend that! Mornings are almost as bad, but I drink coffee for those! What you are doing is what all of us do.... be as patient as possible, try to realize he has a sickness, and is not just trying to be difficult.

I may see you tomorrow, 10:30 is our appt. My daughter would die if I spoke publicly about her, but my thoughts are with you!

Laura

 

Laura, I will be there at 11! We will very likely see you. It is also our third appointment. And yep, the wine comes out often after he goes to sleep. Only a glass, lol. But it helps to calm the nerves. And much coffee in the morning! Do you have a long drive? We are coming from MA, 2 1/2 hours.

[lmkmip67]

Lisa,

So sorry to hear you recite my story! As I sit in a hotel room in Stamford at this moment as we have Dr. B appt tomorrow as well ( our 3rd). We go through the same thing, exactly. I lose it all of the time ( and then feel guilty), Dr. B told me the OCD would go away with antibiotics and he was right! We are at a much better place after 3 months of treatment. She tested positive using Igenex testing for lyme last month and now we have 2 new antibiotics, plus the zithromax, and they are working, sometimes literally overnight! I drink wine by the 3rd bedtime ritual request, but probably shouldn't recommend that! Mornings are almost as bad, but I drink coffee for those! What you are doing is what all of us do.... be as patient as possible, try to realize he has a sickness, and is not just trying to be difficult.

I may see you tomorrow, 10:30 is our appt. My daughter would die if I spoke publicly about her, but my thoughts are with you!

Laura

 

Laura, I will be there at 11! We will very likely see you. It is also our third appointment. And yep, the wine comes out often after he goes to sleep. Only a glass, lol. But it helps to calm the nerves. And much coffee in the morning! Do you have a long drive? We are coming from MA, 2 1/2 hours.

 

I wonder why sometimes I see replies to posts but nothing is posted. I see that once in a while. lol

[laure]

Hey, so we will probably get into the Dr. at 11:15, and you will be there in the office! We come 4 hours, from Hamilton, NY. For the record, I am not a patient person. My husband has the longest fuse in the world. I work till 6 every night and travel most weekends...he is out by 4 or 5 and home all weekend. Who does she prefer during the toughest times??? For some unknown reason it is me! I lose my patience after the 2nd request, and I tell her all the time "I don't know your rules!!!" I follow her requests to a point, and then I just give up. One thing I can tell you...she started lyme treatment December 2nd, and within 10 hours, I kid you not, she did a 180 degree turn! She still waxes and wanes, but it is 10 days or so of great times, alternating with some ragey 10 days or so in between. It is lessening, even in the bad times. She can play with her toys again. She can bathe again. She can brush her hair again. She can touch handles again (!!!) ( except faucets). She even read herself to sleep the other night until midnight. That is a brand new thing for her. Hang tough, and feel good about yourself - one glass of wine is probably medicinal!!!

[lmkmip67]

Hey, so we will probably get into the Dr. at 11:15, and you will be there in the office! We come 4 hours, from Hamilton, NY. For the record, I am not a patient person. My husband has the longest fuse in the world. I work till 6 every night and travel most weekends...he is out by 4 or 5 and home all weekend. Who does she prefer during the toughest times??? For some unknown reason it is me! I lose my patience after the 2nd request, and I tell her all the time "I don't know your rules!!!" I follow her requests to a point, and then I just give up. One thing I can tell you...she started lyme treatment December 2nd, and within 10 hours, I kid you not, she did a 180 degree turn! She still waxes and wanes, but it is 10 days or so of great times, alternating with some ragey 10 days or so in between. It is lessening, even in the bad times. She can play with her toys again. She can bathe again. She can brush her hair again. She can touch handles again (!!!) ( except faucets). She even read herself to sleep the other night until midnight. That is a brand new thing for her. Hang tough, and feel good about yourself - one glass of wine is probably medicinal!!!

 

Yes, well we will have see you tomorrow then! All that sounds so familiar. I can be patient to a point, but even his dad loses his patients after a while. I am going to ask about Lyme again. We shall see! Good Luck tomorrow, and thank you! It helps to know we are not alone, that is for sure!

[laure]

One more thing I just remembered...1/4 or so tablet of melatonin an hour before bedtime. If you can sneak it in, it works wonders - the same as the glass of wine we are having, and it is natural. My dd9 even asks for it on occasion, and she hates/questions every pill I give her. It should put him to sleep in 30 minutes, and helps with during the night awakenings as well, she will fall right back to sleep. No residual sleepiness in the morning. She won't take it often, but I do!

[kferricks]

Since there are so many rituals for bedtime; I have a suggestion that worked my with dd. Pick the one thing that bothers you the most. Then keep track for a couple days counting how many times he does it a day. If its more than 100 start with 100 pennies, if its close to 50 start with 50 pennies etc. Sit him down with you with the jar and the pennies infront of both of you. Talk to him about that 1 thing.(ask him) Why does he feel he needs to do it? Tell him he can say whatever he wants because you understand how hard it is for him. Then explain to him how hard it is for you and that is why you are going to give him x amount of pennies a day. Every time he has you do that one thing, he has to put a penny in the jar. When he uses up all his pennies, he can not ask that request of you. Any pennies left over are his to keep in another jar. When he gets down by half, you will take him to the store to use the money he saved.

 

It sounds dumb, but it worked with my 10yr old. We had to use it for hugs, touching, body rubs. I was to the point my hubby could'nt even put his hand on mine. My skin would just curl and my blood pressure would sky rocket. I love my dd and hugs but to be touched everytime I turned around drove me batty.lol

 

Just a thought that might help.

 

Jodi

[Megs_Mom]

Since there are so many rituals for bedtime; I have a suggestion that worked my with dd. Pick the one thing that bothers you the most. Then keep track for a couple days counting how many times he does it a day. If its more than 100 start with 100 pennies, if its close to 50 start with 50 pennies etc. Sit him down with you with the jar and the pennies infront of both of you. Talk to him about that 1 thing.(ask him) Why does he feel he needs to do it? Tell him he can say whatever he wants because you understand how hard it is for him. Then explain to him how hard it is for you and that is why you are going to give him x amount of pennies a day. Every time he has you do that one thing, he has to put a penny in the jar. When he uses up all his pennies, he can not ask that request of you. Any pennies left over are his to keep in another jar. When he gets down by half, you will take him to the store to use the money he saved.

 

It sounds dumb, but it worked with my 10yr old. We had to use it for hugs, touching, body rubs. I was to the point my hubby could'nt even put his hand on mine. My skin would just curl and my blood pressure would sky rocket. I love my dd and hugs but to be touched everytime I turned around drove me batty.lol

 

Just a thought that might help.

 

Jodi

 

Not dumb at all! That is a GREAT ERP technique. As a suggestion, have your child tell you how many more pennies to remove each day. And I suggest having small rewards (even coupons) that you give the child each day that they make an effort. At this age, daily reinforcement for work that is so very hard for them, can be helpful. Also for things like hugging, we would try to label it, such as "that feels like an OCD hug, not a hug from my sweet girl". We also set up a specific cuddle time twice a day, so that she did not feel that I was rejecting her, just the OCD rituals. Since our daughter's situation was so severe, we found it very important to find ways to reinforce what a great person she is, while still helping her to fight OCD compulsions. OCDMom also has great suggestions posted on this site.

 

lmkm - learning to parent a child with severe OCD will make ANYONE feel like the world's worst parent. It is completely illogical and against all your instincts. I really greived about this, as I felt like a pretty good parent before OCD came into our lives. Whether OCD is caused by PANDAS or genetics - there are techniques that can help you and your child make more sense of the world you suddenly find yourself living in. Our little girl was very severe - at the worst, compulsions filled nearly 100% of her waking hours. She had no joy left in her life, and as her parents, we were nearly destroyed. We were also misdiagnosed, and took far too long to find a PANDAS diagnosis.

 

ERP techniques did not give us a cure, but they did give us some relief so that we could function. We had to find a way to function, as she had lost almost everything in the space of 3 months. It was very hard work at times, and I know some children really struggle to use these tools when in an exacerbation. All children with PANDAS should be treated medically (abx, ivig, motrin, etc - as appropriate) - if you get a quick turnaround in few days and it never comes back, then you don't need professional help. If the remaining OCD is mild, then you can decide as a family if you wish to find professional help to learn the tools of OCD, or not. But if your child and family are suffering on a daily basis as we were, then ERP is as necessary to this illness as the tools of abx, prednisone, ivig.

 

I would strongly suggest that you begin by ordering a few books - one for yourself, and one for you to do with your child. Understanding OCD is key to fighting it. I think of it like a person with a stroke. They may have lost some abilities, but they can learn to use different parts of their brain to do those same functions. The therapy is tough and slow, but the brain is astonishingly capable of learning to function if you train it. Children have especially elastic brains - so they can rewire if they need to.

 

Here are the book recos:

 

To do with your child: What to do if your brain gets stuck: http://www.amazon.com/What-When-Brain-Stuck-What-/dp/1591478057/ref=sr_1_1?ie=UTF8&qid=1294313992&sr=8-1

 

And to read yourself to better understand how OCD works and how to parent a child who even temporarily has it: Aureen Wagner's book "What to do when your child has OCD": http://www.amazon.com/What-when-Child-Obsessive-Compulsive-Disorder/dp/0967734711/ref=sr_1_1?s=books&ie=UTF8&qid=1294314066&sr=1-1

 

For parents, another choice is Tamar Chansky's book: "Freeing your child from OCD": http://www.amazon.com/Freeing-Your-Child-Obsessive-Compulsive-Disorder/dp/B001CYU1M0/ref=sr_1_8?ie=UTF8&s=books&qid=1294314121&sr=1-8

 

I am so sorry that you and the other parents posting here are going through this. My heart goes out to you. If you search the prior posts, and don't find a technique or tool that you think willl work for your child, please let me know what specific compulsion you think would be the first one to work on, and I'd be happy to post a few "mom ideas" for how to break that compulsion down into manageable baby steps. Finding the smallest little think to work on was key to our ability to do ERP. It is often far to frightening to attack an entire ritual. So for example, you might fight back on the covers ritual, by doing them wrong for just 10 seconds on the first night, 2 or 3 times. Then you would "fix" the covers. Then you would increase the time each night. After some time, you might leave one part of the covers wrong for the night, but do the rest of the covers "right". Having rewards for this (reasonable ones) is also a key for many kids. Frankly, cheering & really respecting & loving the work they do accomplish is also key.

[Joan Pandas Mom]

We have been to a few excellent 2-3 week out patient programs for OCD. They told us to STOP doing compulsions for my son. Once you cut one monstrous head off of OCD, another one quickly grows. I am struggling with this same problem right now too, but I am finding when I don't give in and wait out the screaming, crying and yelling, he will eventually fight and do it himself. I am still giving in to things that relay to his health, like food. He lost so much weight that I will still do compulsion to make sure he eats. Eventually, I will stop those too. Stay strong. I know it is torture to watch your child suffer, but eventually OCD will lose and your child will win. The OCFoundation has listings of therapist throughout the country.