PANDAS PARENTS

[alderliefest]

Hey all I'm a 23yr old PANDA. My mom is constantly frustrated by my OCD habits and gets very angry with me when I let my panic get the best of me. So I ask you how do you parents handle your PANDAS children!?

[MomWithOCDSon]

Hey all I'm a 23yr old PANDA. My mom is constantly frustrated by my OCD habits and gets very angry with me when I let my panic get the best of me. So I ask you how do you parents handle your PANDAS children!?

Well, I think it depends on the age of the child.

 

I'm guessing that, because you are for all practical purposes now an "adult child," your mom's frustration is tied to not only expecting age-appropriate behavior of you, but desperately wishing that it was possible for you to maintain age-appropriate behaviors, despite your OCD/PANDAS. That's a frustration I think all parents share; it just varies from age to age in terms of what's considered "age appropriate."

 

I can only speak for myself, and my DS13's PANDAS behaviors are 99% OCD in nature. It hobbles him at times from acting like a 13-year-old, probably not unlike yours hobbles you from acting like a 23-year-old. Our DS has been in ERP therapy off and on since he was first diagnosed with OCD at 6, and we've attended much of the therapy, as well due to his age; therefore, we've had an opportunity to build skills and develop tools and techniques for helping him muscle through some of the compulsions, and moving past some of the obsessions, as well. Our mantra in our house is, "I will help you. I will accommodate you. But I will NOT accommodate the OCD." I guess it's sort of a "tough love" thing many times because, in our experience, if you feed the OCD behaviors, they just grow and expand and spread throughout more and more of his everyday activities and choices. Given an edge, it would consume his life. So we can't give it that edge.

 

Very early on in therapy, both we and DS were encouraged to separate the OCD behaviors from the child . . . to blame the OCD, not the kid who has the OCD. He even gave it a name, an alter-ego, so when we felt like yelling out of frustration or snapping because of the pervasiveness of some of the behaviors, we could yell at the alter-ego, blame the alter-ego, snap at the alter-ego and not, in totality, take it out on DS. That has definitely helped him preserve much of his self-esteem and sense of being a good person with a "bad" condition, rather than a bad person.

 

PANDAS is treatable via antibiotics, IVIG, etc. But, especially at your age, those OCD behaviors, IMHO, require therapy. Some of your compulsions and obsessions have likely become routine, habitual, by this point, so the behavioral side of the illness has to be addressed, also. Have you tried ERP? Can your mom attend some sessions with you so that she better understands how she can help you without aiding and abetting the OCD?

[Phasmid]

Not very well, I must admit. It is very hard for parents to see their kids suffering and affected by something that can't be seen, or easily diagnosed, or easily treated. Unfortunately, we parents, I think, are badly affected by all the stress and worry that overwhelms us. It is not anger or frustration at the child as much as it is toward the invisible monster causing all the trouble. So, next time your mom loses her cool or lashes out, remember this: It is not toward you, but the disorder that is behind the scenes making you do things that you cannot help.

 

Many times, and I can tell you that it has nearly destroyed me, I have screamed at my son, said things I shouldn't, gotten extremely angry at his behavior. I try to tell him that my frustration is not directed at him, but at the disorder. He does not understand this of course as he is still a little boy. We just want our kids to be healthy and happy. To see you suffering must hurt her so much. She feels helpless but is trying her best.

 

Hope this helps...

[LNN]

Hey all I'm a 23yr old PANDA. My mom is constantly frustrated by my OCD habits and gets very angry with me when I let my panic get the best of me. So I ask you how do you parents handle your PANDAS children!?

 

You may not like my response....because although I empathize with him, I still hold him accountable. We have a dog and we crate her when we're gone for the day. When my son rages, he tries to "crate" the angry guy. Mostly it works. Sometimes tho, he'll tell me he can't "help it.' That the Pandas made him act a certain way. I remind him that if our dog bites a neighbor, I'm still responsible, even if I didn't personally do the biting. It's a responsibility I have as the owner of the dog.

 

So if he's trying like crazy to control his temper or use ERP techniques, I try my best to be understanding. But if he's not trying, or if he's letting OCD or rages seriously interfere with his ability to function or interfere with the rest of the family's ability to function, then he's still held responsible, sometimes with a loss of privileges. Yes, it's a disease, but it's not a blank check for uncontrolled behavior.

 

Makes me sound harsh and I'm really not. We try to give a lot of slack. But even tho a mother's love is endless, her patience is not.

 

Laura

Edited June 9, 2010 by LLM

[tired mom]

I am so sorry you deal with this. The way I handle my child is a day at a time and then pray for the strength to get through the next day. As you know there are some good days and I really enjoy how easy it is to breath on those days. Although we are moms, we are also human beings, and we realize what a fine line we walk between sanity and insanity.I have lost my patience many times even though I know I cannot stop the ocd by screaming at it ,but we just reach a breaking point also. I think it just takes its toll on everyone and sometimes its ok to have ourselves a little pity party... Spend some quality time with your mom when your having a good day. I hope that is very soon!!!

[Megs_Mom]

We use ERP therapy to develop a language and tools both as a parent and for the child. This was critical to us, in terms of both my frustration level and in terms of her tendency to panic. ERP has helped us both immensely - and my husband, and our most wonderful babysitter in the world.

 

I love my child more than anyone in the world. I expect a lot from her, when healthy, in term of OCD. I am less particular about housework or chores, but my expectations about courage are pretty big. I want her to be a happy healthy functional adult someday, and if I am not around, I want her to have every tool possible to deal with her life. I want her to be independent and full of joy. So yep, I am tough with her - always with love - but I am tough. I am soft when needed too - but most of the time, she needs to know that I believe in HER, not in OCD.

[matis_mom]

Hey all I'm a 23yr old PANDA. My mom is constantly frustrated by my OCD habits and gets very angry with me when I let my panic get the best of me. So I ask you how do you parents handle your PANDAS children!?

Hi there!

It is not easy... Before we knew what it was, we used to get very angry. Then we found out it was a medical problem, and our son could only help himself to a certain extent. We also realized a lot of the things we were doing were just feeding the OCD monster. I read a great book called "What to do when your child has OCD" and I learned a lot about it. Although the book was not specific for PANDAS, I found it very helpful.

 

Here are some of the things I do with my son so we can all keep our cool...

1) Even if he is going through an exacerbation, I try not to answer reasurance questions ("Is it ok if I touched this? Is it ok if I did that?, etc.)

2) When in panic mode, we found "breathing counts" (breathe all the way in, hold it, breathe all the way out almost till you cough, count 1... and repeat until 10) are great for calming down.

3) When he has something troubling him and can't talk about it (but really wants to), we found pencil and paper work really well and getting it out on paper helps him relax.

 

Like I said, it is not easy. We do "loose it" sometimes. But I think the best thing you guys can do as a family is to learn more about OCD and the things that make it better or worse. Everyone needs to understand this as well as they can. My son is only 12, but I have explained things to him and that way he knows that I am not being mean when I don't give in to OCD, I am just trying to help him.

 

God bless,

 

Isabel

 

PS: For the bad times, ibuprofen seems to help.