Guest guest Posted May 4, 2010 Report Share Posted May 4, 2010 Well, I'm not sure what ERP or CBT are, but she's bringing in stuff to throw away and she's to throw out a few hard things per week. They also talk about ways to keep hands busy and to let go of some things. It works great in the office but isn't translating to home very well. She's not on meds yet, but I'm expecting the therapist to mention it again. Jen is very sensitive to medication in general, so we wanted to wait a bit. But I'm wondering if we should try it and see if and how she reacts. I'm glad to hear your dd got her life back. My dd isn't quite there yet, just little progress overall. I'm the one who throws her hands up and can't cope with all of her stuff. It's overwhelming for me because everything is special. Everything. So, it is nearly impossible to throw away, recycle or donate much. My hubby now says no more art projects because we don't have the space to store ALL of them forever. And, she is so creative. I love her creativity but not the piles of yet more stuff. > > > > > > > > > > Hi , > > > > > Yes, that is the nature of the beast with ocd. It seems as soon as you have got one thing under control, something else pops up. > > > > > At least your daughter is making progress with the hoarding! > > > > > > > > > > I wanted to mention that I have ocd as well as two of my kids. I am married with three children, and manage the household, work part time, etc. > > > > > Your daughter can get better.!! Always have hope and think positively!! !( as hard as that can be at times) > > > > > > > > > > Welcome to the group! > > > > >  You will find lots of support here! > > > > > Hugs > > > > > Judy > > > > > > > > > > > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > > > From: <dcubed2@ > > > > > > To: @ yahoogroups. com > > > > > Sent: Mon, May 3, 2010 10:30:31 AM > > > > > Subject: Introduction > > > > > > > > > >  > > > > > Hello, my name is and my younger dd, age 10, was diagnosed with OCD Hoarding in Nov, when she started therapy. In March she added hair pulling to her list. I have no idea if or when something new will pop up. > > > > > > > > > > We've been in weekly therapy since Nov and some areas are better but others are worse, like the new hair pulling. She has no eye lashes and a stripe through one eyebrow. But she isn't waking us up at 3AM because she MIGHT have thrown away something important anymore. > > > > > > > > > > I worry a lot about her future, will it be normal? Will she be able to get married and have a family, her dearest wish since she was 4? > > > > > > > > > > How is the kid's list? If it might help her talk to othr kids, I'll sign her up. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2010 Report Share Posted May 4, 2010 We've known something wasn't right since she was three, with extreme phobias. She's been hoarding since she was four, but we thought it was just a phase. It had gotten worse in the last year, with waking up sobbing in the middle of the night. Will it continue to get worse throughout puberty? That's really not a pleasant thought, with puberty being bad enough. > > > > > > > > > > > > > > Hi , > > > > > > > Yes, that is the nature of the beast with ocd. It seems as soon as you have got one thing under control, something else pops up. > > > > > > > At least your daughter is making progress with the hoarding! > > > > > > > > > > > > > > I wanted to mention that I have ocd as well as two of my kids. I am married with three children, and manage the household, work part time, etc. > > > > > > > Your daughter can get better.!! Always have hope and think positively!! !( as hard as that can be at times) > > > > > > > > > > > > > > Welcome to the group! > > > > > > >  You will find lots of support here! > > > > > > > Hugs > > > > > > > Judy > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > > > > > From: <dcubed2@ > > > > > > > > To: @ yahoogroups. com > > > > > > > Sent: Mon, May 3, 2010 10:30:31 AM > > > > > > > Subject: Introduction > > > > > > > > > > > > > >  > > > > > > > Hello, my name is and my younger dd, age 10, was diagnosed with OCD Hoarding in Nov, when she started therapy. In March she added hair pulling to her list. I have no idea if or when something new will pop up. > > > > > > > > > > > > > > We've been in weekly therapy since Nov and some areas are better but others are worse, like the new hair pulling. She has no eye lashes and a stripe through one eyebrow. But she isn't waking us up at 3AM because she MIGHT have thrown away something important anymore. > > > > > > > > > > > > > > I worry a lot about her future, will it be normal? Will she be able to get married and have a family, her dearest wish since she was 4? > > > > > > > > > > > > > > How is the kid's list? If it might help her talk to othr kids, I'll sign her up. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2010 Report Share Posted May 4, 2010 ERP is exposure and response prevention. Having her choose things to throw away and then throw them away is ERP. CBT is cognitive behavioral therapy. ERP is a form of CBT, but CBT can also include trying to replace dysfunctional/unrealistic thought patterns (I am no good at x) with more realistic and functional ones (I am having a hard time at x, but I just started and with practice I can get better). CBT can be useful for many things, but ERP is the specific form that has been shown to work for OCD. It is often hard to generalize things learned in therapy (a safe and less emotionally invested place than home) to home, but it can and should happen eventually. Hang in there, and tell yourself that you and she can and will get through this (a little CBT for you--I know because I have to do this myself. I used to say " I can't take x any more " and now I try to say " I don't want to take x any more, but I can and will get through it.) (mom w/OCD, 10 yo dd w/OCD) > > Subject: Re: Introduction > To: > Date: Tuesday, May 4, 2010, 6:51 PM > Well, I'm not sure what ERP or CBT > are, but she's bringing in stuff to throw away and she's to > throw out a few hard things per week. They also talk > about ways to keep hands busy and to let go of some > things. It works great in the office but isn't > translating to home very well. > > She's not on meds yet, but I'm expecting the therapist to > mention it again. Jen is very sensitive to medication > in general, so we wanted to wait a bit. But I'm > wondering if we should try it and see if and how she > reacts. > > I'm glad to hear your dd got her life back. My dd > isn't quite there yet, just little progress overall. > I'm the one who throws her hands up and can't cope with all > of her stuff. It's overwhelming for me because > everything is special. Everything. So, it is > nearly impossible to throw away, recycle or donate > much. My hubby now says no more art projects because > we don't have the space to store ALL of them forever. > And, she is so creative. I love her creativity but not > the piles of yet more stuff. > > > > > > > > > > > > > > > > > > Hi , > > > > > > > Yes, that is the nature of the beast with > ocd. It seems as soon as you have got one thing under > control, something else pops up. > > > > > > > At least your daughter is making progress > with the hoarding! > > > > > > > > > > > > > > I wanted to mention that I have ocd as well > as two of my kids. I am married with three children, and > manage the household, work part time, etc. > > > > > > > Your daughter can get better.!! Always have > hope and think positively!! !( as hard as that can be at > times) > > > > > > > > > > > > > > Welcome to the group! > > > > > > >  You will find lots of support > here! > > > > > > > Hugs > > > > > > > Judy > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > > > > > From: <dcubed2@ > > > > > > > > To: @ yahoogroups. com > > > > > > > Sent: Mon, May 3, 2010 10:30:31 AM > > > > > > > Subject: Introduction > > > > > > > > > > > > > >  > > > > > > > Hello, my name is and my younger dd, > age 10, was diagnosed with OCD Hoarding in Nov, when she > started therapy. In March she added hair pulling to her > list. I have no idea if or when something new will pop up. > > > > > > > > > > > > > > We've been in weekly therapy since Nov and > some areas are better but others are worse, like the new > hair pulling. She has no eye lashes and a stripe through one > eyebrow. But she isn't waking us up at 3AM because she MIGHT > have thrown away something important anymore. > > > > > > > > > > > > > > I worry a lot about her future, will it be > normal? Will she be able to get married and have a family, > her dearest wish since she was 4? > > > > > > > > > > > > > > How is the kid's list? If it might help her > talk to othr kids, I'll sign her up. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been > removed] > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been > removed] > > > > > > > > > > > > > > >     > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2010 Report Share Posted May 4, 2010 Meds could make a huge difference for your dd. Honestly, if you aren't seeing any improvement I would look at starting meds. Is she having obsessive thoughts? Is she functional? Can she leave the house? Is she still able to do things or has OCD taken over all aspects of her life? Does she function at school? ERP is Exposure and Response Prevention. Here is a blurb on it: " Using the symptom list, the client experiments during treatment sessions with exposure to his or her fears, starting with the least anxiety-provoking items from the symptom list. Regular " homework " assignments are given so that the client can continue to challenge symptoms between therapy sessions. These homework assignments are specifically designed for each individual client, and are an essential part of treatment for OCD and related anxiety conditions. " CBT is cognitive behavioral therapy. These are considered the best therapies for OCD. There is also DBT which is Dialectical Behavioral Therapy. This was also used at my dd's inpatient program. That one is all about skills. I hope things improve soon. Stormy ________________________________ To: Sent: Tue, May 4, 2010 5:51:59 PM Subject: Re: Introduction Well, I'm not sure what ERP or CBT are, but she's bringing in stuff to throw away and she's to throw out a few hard things per week. They also talk about ways to keep hands busy and to let go of some things. It works great in the office but isn't translating to home very well. She's not on meds yet, but I'm expecting the therapist to mention it again. Jen is very sensitive to medication in general, so we wanted to wait a bit. But I'm wondering if we should try it and see if and how she reacts. I'm glad to hear your dd got her life back. My dd isn't quite there yet, just little progress overall. I'm the one who throws her hands up and can't cope with all of her stuff. It's overwhelming for me because everything is special. Everything. So, it is nearly impossible to throw away, recycle or donate much. My hubby now says no more art projects because we don't have the space to store ALL of them forever. And, she is so creative. I love her creativity but not the piles of yet more stuff. > > > > > > > > > > Hi , > > > > > Yes, that is the nature of the beast with ocd. It seems as soon as you have got one thing under control, something else pops up. > > > > > At least your daughter is making progress with the hoarding! > > > > > > > > > > I wanted to mention that I have ocd as well as two of my kids. I am married with three children, and manage the household, work part time, etc. > > > > > Your daughter can get better.!! Always have hope and think positively!! !( as hard as that can be at times) > > > > > > > > > > Welcome to the group! > > > > >  You will find lots of support here! > > > > > Hugs > > > > > Judy > > > > > > > > > > > > > > > > > > > > > > > > > ____________ _________ _________ __ > > > > > From: <dcubed2@ > > > > > > To: @ yahoogroups. com > > > > > Sent: Mon, May 3, 2010 10:30:31 AM > > > > > Subject: Introduction > > > > > > > > > >  > > > > > Hello, my name is and my younger dd, age 10, was diagnosed with OCD Hoarding in Nov, when she started therapy. In March she added hair pulling to her list. I have no idea if or when something new will pop up. > > > > > > > > > > We've been in weekly therapy since Nov and some areas are better but others are worse, like the new hair pulling. She has no eye lashes and a stripe through one eyebrow. But she isn't waking us up at 3AM because she MIGHT have thrown away something important anymore. > > > > > > > > > > I worry a lot about her future, will it be normal? Will she be able to get married and have a family, her dearest wish since she was 4? > > > > > > > > > > How is the kid's list? If it might help her talk to othr kids, I'll sign her up. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2010 Report Share Posted September 14, 2010 , Having had a child suffer similar to yours for over 3 years before a diagnosis of PANDAS, I would BEG of you to take your child to a doctor who has treated PANDAS successfully. (for us that would be Dr. Bouboulis in Darien CT, who we drive 6 hours to see) And PLEASE, go to latitudues.org and read more about it PANDAS on the forum there. The headaches could be from an undiagnosed sinus infection caused by strep or allergies that have gone unnoticed. Sometimes the infection can causea phlegmy throat, sometimes no noticeable symptoms. My dd began like yours did with a little anxiety here and there but further exacerbations eventually left her completely incapacitated. That was when we figured out it was PANDAS and we began treating the infection and the autoimmune condition. Thankfully, two IVIG's later my dd is doing really well, after a setback with one more sinus infection. (thank God we know what to look for now) Urinary frequency is a symptom of PANDAS as well as OCD, anxiety, and tics. Any or all of those symptoms can show up. The urinary frequency combined with the other symptoms is the alarm going off for me that is screaming that your child has PANDAS. Most doctors don't know a lot about PANDAS and it is still controversial, but if you get to the right doctor you will get the help she needs. Please call me if you want to talk more about it. I'll email you my number privately. From: [mailto: ] On Behalf Of Connelly Sent: Tuesday, September 14, 2010 10:13 AM To: Subject: Introduction Hi! My name is and I'm here about my almost 5-year-old named Carysa. I'm going to be as brief as possible. We've not had any official diagnosis but her physical is coming up this month so I'm going to chat with her Ped about what's been going on. Her symptoms include: worrying incessantly about getting sick, worrying about being contaminated by something she touches (her foot, the dog, the floor) and then puts her fingers in her mouth, asking " what's going to happen if... " questions, panicking before school (she goes 2 days a week to a preschool she's been to for 3 years now and never had a problem before), crying for hours during school, worry about bad things happening to her, fear of nightmares/having nightmares. Also last night while she was sleeping I noticed she grinds her teeth terribly which I believe is a symptom of stress? In a (big) nutshell, here is how I think this anxiety evolved: When she was 18 months: I started bleeding during my 3rd pregnancy and had to stop nursing cold turkey. After a week of crying she accepted it and started to suck her thumb. When she was 20 months: I had to go stay in the hospital for 2 months due to complications from complete placenta previa. My Mom/MIL/husband took over mothering duties. Saw my kids for about 1/2 hour every other day. When she was 22 months: Was out-of-town with my husband and her older sister when I had to have an emergency c-section due to hemmoraging. Husband had to leave under emergency conditions. Grandparents brought kids back home a day later. I spent 6 more days in the hospital and my baby spent 30 days since she was a low-weight preemie. I had to go every day to visit her, sometimes twice, and left Carysa and my other daughter with my Mom. Several weeks after the baby came home, my parents almost died in a car accident. I had to go to the hospital again almost daily for a month to care for my Mom (my Dad was released after a few days and had to go back to work). At her 3 year physical the doctor discovered a bead in Carysa's ear. She spent 1/2 an hour trying to get it out and then sent us to and ENT. They had to wrap my daughter up like a mummy and hold her down to extract the bead. This began her fear of doctors. Things were fine for a while after this, fast forward to May of this year... When she was 4 1/2, in April of this year, we all came down with a horrible stomach bug. The baby got it the worst and when I took her to the doctor he said she could have a neurological condition since she threw up 9 days in a row! Of course I panicked and talked about it at home a lot around Carysa not thinking she cared or was paying attention. The baby was fine and got better a few days after the doc visit. A month later...we go to Disney and the first night she throws up all over the lobby of a restaurant. The teenage hostesses make a huge deal of it and act like they are gagging and talking about how awful it smells in front of everyone and in front of my daughter. She notices. Take a long bus ride back to the hotel to clean her up and she's fine for the rest of the trip. A month later...take a long road trip and she keep saying she has to use the bathroom. Every time we pull off to find a bathroom nothing happens. When we are 1/2 hour from our destination she says she has to go again and we told her to wait since we are so close (we literally stopped like 8 times before). She says in a panicky voice " I wonder what's happening to me! " and soils herself. She's fine after that but I wondered if maybe she had motion sickness or it was her first real feeling of anxiety? Needless to say we felt horrible for not stopping again. Here is when everything snapped in her little brain. At the end of June we took my dad out for Father's Day and she threw up in a restaurant again. After that she became fearful of everything. Leaving the house, going to restaurants, going to church, etc. She started complaining of headaches and stomachaches and laid in bed sucking her thumb a good portion of the day. After a few weeks she got a bit better and after a few successful trips to restaurants she was no longer scared of them. The first night of VBS they called me to pick her up and then I had to stay with her every night thereafter. She got better with going to church after that for the most part (cried this past week). It's preschool that's been awful. Like I said before, she's been going to this school for 3 years. This year is the first her best friend (I'm talking her kindred spirit) is not attending and I wonder if that has anything to do with it. She cries and cries and worries that she's going to throw up or go to the bathroom and no one will wipe her, etc...once she's there she either cries for a few hours and then gets over herself or she just isolates herself. I know she doesn't like her teacher this year and she's scared to eat lunch there. I did take her to the ped (the same who told me the baby might have neurological probs...for Carysa he dismissed all my theories off the bat and told me to take her to a psych and then proceeded to hand me a card for his wife's practice...I've since switched peds!) when she was complaining of the headaches (and also an eye doctor to rule out a need for glasses). Eyesight is fine. The eye doc mentions taking her to school psychologist after I mention anxiety and the fact that she writes backwards. I haven't taken her. I know she is very young to be displaying these symptoms but I had awful anxiety and depression as a child (once spent an entire summer in bed) and no one took me seriously. Turns out I have lactose intolerance and DID feel sick for real every day after my breakfast of cereal with milk. My brother and husband also had mild OCD symptoms throughout life and my grandmother is a schizophrenic. My aunts also suffer from anxiety. My Mom and Mother-in-law (who is a nurse practitioner) keep telling me this is a phase Carysa is going through and to ignore her. That doesn't seem right to me. Carysa is very intelligent (every Mom thinks her child is, right? ;D). She is left-handed, has been writing for 2 years...backwards (which I hear is normal for lefties). Can read some. Asks the deepest questions (some of which I have to find the answers for online) and makes the most brilliant observations. She is very artistic but also loves science and wants to be a vet when she grows up. Sigh. Any insight? Thanks for reading my novel if you've made it this far!!! Quote Link to comment Share on other sites More sharing options...
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