smallworld
Moderator
Hugs. Let us know what happens in the meeting.
i'Tourette's Syndrome a forever thing they all agree
Steely
Active Member
"these doctor's haven't run across a true difficult child"
You know Jena - that is exactly it. Many, many docs have not run into a TRUE difficult child.
I learned a long time ago to take what the Docs say, process it, and then tell the Docs how I think it must be.
Every doctor always wanted to put Matt in a box - and to date - he has not been put in one. There has been no ONE thing that has been helpful. Unfortunately. Instead, it has been a long journey of trial and error.
If you think keeping her on Zyprexa, or upping the dose is what needs to be done - than you are empowered to tell them that - demand that. At some point - you have to feel as if you have the most knowledge about your daughter,and that you are leading her recovery with the doctors help.
You know Jena - that is exactly it. Many, many docs have not run into a TRUE difficult child.
I learned a long time ago to take what the Docs say, process it, and then tell the Docs how I think it must be.
Every doctor always wanted to put Matt in a box - and to date - he has not been put in one. There has been no ONE thing that has been helpful. Unfortunately. Instead, it has been a long journey of trial and error.
If you think keeping her on Zyprexa, or upping the dose is what needs to be done - than you are empowered to tell them that - demand that. At some point - you have to feel as if you have the most knowledge about your daughter,and that you are leading her recovery with the doctors help.
Last edited:
Hey!!!
Give her a break?? LOL. she's had a break for 12 years that's what got her here. mom Mom'd far too much i think at times. yet the last year iv'e worked real hard at learning how detatch not that it helps her lol.
anyhow, had a mtg. with entire staff i have to say i truly love these people. they are warm, friendly, blunt, honest and admitting when they just dont' know.
so she didnt' eat well today at all there. the old behaviors came back. I told them my thought process on stuff.l I said simply her subconscious and conscious mind do not coincide i said that's what i think. upfront yes she wants to go home yet subconsciously can't spell she is screaming oh no not back there to no friends, no life etc. (hence the my throat hurts). I said also it to me now that i can look back seems like a mix of anxiety true fear from shock of going home mixed with neediness to be sick (look at me, look at me) she loves attention on her and knows it will dissapate somewhat, mixed with all the other fun junk.
the doctor's all looked at me and said we are on the same exact page with you. and you should go back to school and become a therapist and work with kids! that was a cool compliment.
anyhow we all agree whether i'm here 2 mos or 1 mos she'll react same when its time to go home. choke up etc. they also all agree that she will def. struggle with this again that's why the aftercare piece has to be in place.
so it all rests on this weekend. if she does a full shut down on me i simply can't go that would be silly i'll have to stay a bit longer to show her guess what that isnt' going to work and be proactive and reactive at the same time with-her. showing her a direct response to her negative actions. so it'll rest on this weekend now. i have to check in early monday a.m. with them.
they think dad not coming is great. they said his anxietys thru roof he's already called them all day long regarding difficult child.
what else can i say or share? they only reason they taper off the medications is because they've never had a kid like difficult child. and with your basic anxiety child you can taper down once the fear has been conquered. with her it's different.
Give her a break?? LOL. she's had a break for 12 years that's what got her here. mom Mom'd far too much i think at times. yet the last year iv'e worked real hard at learning how detatch not that it helps her lol.
anyhow, had a mtg. with entire staff i have to say i truly love these people. they are warm, friendly, blunt, honest and admitting when they just dont' know.
so she didnt' eat well today at all there. the old behaviors came back. I told them my thought process on stuff.l I said simply her subconscious and conscious mind do not coincide i said that's what i think. upfront yes she wants to go home yet subconsciously can't spell she is screaming oh no not back there to no friends, no life etc. (hence the my throat hurts). I said also it to me now that i can look back seems like a mix of anxiety true fear from shock of going home mixed with neediness to be sick (look at me, look at me) she loves attention on her and knows it will dissapate somewhat, mixed with all the other fun junk.
the doctor's all looked at me and said we are on the same exact page with you. and you should go back to school and become a therapist and work with kids! that was a cool compliment.
anyhow we all agree whether i'm here 2 mos or 1 mos she'll react same when its time to go home. choke up etc. they also all agree that she will def. struggle with this again that's why the aftercare piece has to be in place.
so it all rests on this weekend. if she does a full shut down on me i simply can't go that would be silly i'll have to stay a bit longer to show her guess what that isnt' going to work and be proactive and reactive at the same time with-her. showing her a direct response to her negative actions. so it'll rest on this weekend now. i have to check in early monday a.m. with them.
they think dad not coming is great. they said his anxietys thru roof he's already called them all day long regarding difficult child.
what else can i say or share? they only reason they taper off the medications is because they've never had a kid like difficult child. and with your basic anxiety child you can taper down once the fear has been conquered. with her it's different.
Last edited:
pepperidge
New Member
Jena
Seems good I guess. Sounds like what your daughter could benefit from would be a psychiatric oriented day treatment plance that could deal with anxiety issues as they come up and monitor medication. I suppose it all comes down to insurance. It seems that her issues are so severe and complicated that a couple of therapy sessions a week aren't going to cut it. Too bad you can't find a day treament place in Portland that could work with the clinic for a month or two until you got some basic stabilization in place. Then you could go back to NY with all the things you have lined up.
It just feels like it all about to go up in smoke but maybe that is just a reaction to what you have said.
Hope the week calms down.
P.
Seems good I guess. Sounds like what your daughter could benefit from would be a psychiatric oriented day treatment plance that could deal with anxiety issues as they come up and monitor medication. I suppose it all comes down to insurance. It seems that her issues are so severe and complicated that a couple of therapy sessions a week aren't going to cut it. Too bad you can't find a day treament place in Portland that could work with the clinic for a month or two until you got some basic stabilization in place. Then you could go back to NY with all the things you have lined up.
It just feels like it all about to go up in smoke but maybe that is just a reaction to what you have said.
Hope the week calms down.
P.
yea me too. she was stable, that's just it. and we've been here before. at home she ate, than she shut down again. there are alot of pieces to the puzzle and unless you really can see her to gauge her which is hard for all of us it's a hard call.
i'm just going to keep my fingers crossed on this one and run with the old what's to be will be. a therapist just called me back from new york. yet she has never dealt with-eating disorder kids before and well to be honest she couldnt' handle herself on the phone that well either. i took her name and number told her id' be in touch on monday to let her know. i think just the opposite she needs to live life a bit. she's been so sheltered now for sooo long since june of last year when it hit. it's time to live a little,i told her today how id lined up horse back riding for her, singing lessons. she seemed pleased.
it is what it is in reality. if this kicks up just like all her other junk hopefully we can begin again with a new therapist a stronger one than woman we worked with for years that can give her new coping skills to use so that when it begins to happen again she'll know ok i gotta do this that and the other. at some point she has to want to help herself. truly. i may sound mean yet it's all about mom what can you do. now i get im mom i advocate make the appointments drive her, find the doctor's etc. yet it has to be her making a choice at night ok when i cant' sleep and i'm manic i can do this that or the other. not bang down my door.
make sense?
i'm just going to keep my fingers crossed on this one and run with the old what's to be will be. a therapist just called me back from new york. yet she has never dealt with-eating disorder kids before and well to be honest she couldnt' handle herself on the phone that well either. i took her name and number told her id' be in touch on monday to let her know. i think just the opposite she needs to live life a bit. she's been so sheltered now for sooo long since june of last year when it hit. it's time to live a little,i told her today how id lined up horse back riding for her, singing lessons. she seemed pleased.
it is what it is in reality. if this kicks up just like all her other junk hopefully we can begin again with a new therapist a stronger one than woman we worked with for years that can give her new coping skills to use so that when it begins to happen again she'll know ok i gotta do this that and the other. at some point she has to want to help herself. truly. i may sound mean yet it's all about mom what can you do. now i get im mom i advocate make the appointments drive her, find the doctor's etc. yet it has to be her making a choice at night ok when i cant' sleep and i'm manic i can do this that or the other. not bang down my door.
make sense?
klmno
Active Member
Personally, I think that hits the nail on the head. I'd bet money she goes right back to the old ways any time she is faced with the new plan for socialization or detaching from you or anything else that threatens her comfort zone, which isn't a healthy comfort zone. She feels safe with the comfort zone she has there. She will most definitely push it to the point of harming her bodily organs again, in my humble opinion, because she knows you'll jump in and bail her out before she dies. The problem is that she isn't thinking maturely and rationally enough to understand the real importance and seriousness of this. (Again, all just MHO.) But how do you teach that instead of enabling if you keep finding one more treatment center every time she backslides and takes things a step further?
I also agree that if you are comfortable with this treatment team, as you appear to be, then you should follow their discharge recommendations/plans because if you only folklow part of it and get other profs involved who are approaching things differently, you won't be able to tell up from down and I can't see either approach working. At least if you put both legs in one approach you can get to a conclusion about whether or not it really works for your child- after all, it's not the statistical child or the common non-eating child, or a child that has the exact issues someone else's child had that you are trying to treat here. It's your own unique child, with her own unique personality and set of problems. The first hospital medicated her until she was nearly a zombie and that didn't help her become more accessible or receptive therapuetic-wise. I know a lot of people swear by that approach but it simply doesn't work with all kids- especially the ones who have learned to use their issues to manipualte Mom because they KNOW Mom will keep looking for a bigger resolution every time the kid raises the stakes.
DDD
Well-Known Member
Just sending my most supportive thoughts and hugs. Like everyone in "the family" I just wish that we could solve the puzzle and make life aok for you, difficult child and the family. There's no doubt that you are the expert and you'll do the best job possible in a very difficult situation. DDD
BusynMember
Well-Known Member
As one who had such a severe anxiety disorder that I couldn't function, I do think medications are important, but not necessarily Zyprexa and under no conditions will medications solve all the problems. A lot of that is learning how to manage the stress. I actually wondered if she would backslide when you had to leave, and she did...it is consistent with anxiety disorder. She is anxious that you are going so her symptoms came back. Not being able to swallow is common when you are having a panic attack. Personally, I really got relief from the benzodiazapens. Although they are habit forming, they don't have as many side effects as drugs like Zyprexa (my son has serious side effects on this). Has she ever been in Cognitive Behavioral Therapy? I loved it. A newer type that is CBT intensified is Dialectal Behavioral Therapy. First developed for borderline personality disorder, it is now being used for a whole array of differing problems...and I think it's even more effective than CBT. You're the mom. No matter what we say or suggest, she is your daughter and you know her best. You see first hand what is and what is not working. You seem very much in control and I trust you to make good decisions about your daughter. I just wanted to give you the heads up on dialectal behavior therapy. It's just excellent for anyone who seems to change moods very quickly and be unable to self-regulate themselves. Nothing has calmed me down as much as this therapy and I'm anxiety hardcore The pioneer of DBT works out of Seattle, Oregon too. Don't you live in Oregon?
Good luck, and you are just a terrific mom and very strong person. Here is a link explaining about Dialectal Behavioral Therapy...ignore any references to borderline...it can be used successful for many serious mental health issues.
The pioneer of DBT works out of Seattle, Oregon too. Don't you live in Oregon?Good luck, and you are just a terrific mom and very strong person. Here is a link explaining about Dialectal Behavioral Therapy...ignore any references to borderline...it can be used successful for many serious mental health issues.
confuzzled
Member
this whole thing really makes no sense to me...unless i'm missing a big chunk of the story.
i thought you were going to there for a theraputic clinic based on the maudsley approach for food phobias. but yet she hasnt made it out of the medical setting yet? i get that the hospital doctors arent comfortable with the psychiatric end of things (except, no i dont exactly, i dont get why there is no psychiatrist in this equation who would be perfectly capable of treating the other issues). but i'm not particularly clear on this "three meal and out thing"...its the equivalent of a drug addict abstaining through a church retreat--odds are they are going back to old habits as soon as given the opportunity. i'm not understanding why she hasnt been moved over to the theraputic component...surely they understand there is more to treating this then just puppy dogs and rainbows, and regardless of their "approach" should have experts available to deal with all aspects of the mental health symptoms that would accompany food phobia, be it with whatever modalities they think are appropriate, combined with medical management--which would include medication monitoring.
it seems to me that its an insurance issue at this point, which i also dont understand. surely you had a prior auth for the theraputic portion....which should still be in effect since she hasnt been in that program yet. it doesnt sound right that a medical based hospital stay would void that auth--how would it differ if you flew out there and she suddenly had appendicitis? if you think you need to stay, that might be a question worth asking of your benefits coordinator.
and i sincerely hope they step up and help you coordinate services back home. i'd make it extremely clear you are having difficulty with local care. followup is one thing--major treatment of a cluster of serious disorders is another. even though you are on another coast, there should be a highly involved social worker helping you coordinate services at home--in fact, they would probably have better luck getting in with people than the averge parent might.
just focus on the most important things--all of the rest can be worked out later.
i thought you were going to there for a theraputic clinic based on the maudsley approach for food phobias. but yet she hasnt made it out of the medical setting yet? i get that the hospital doctors arent comfortable with the psychiatric end of things (except, no i dont exactly, i dont get why there is no psychiatrist in this equation who would be perfectly capable of treating the other issues). but i'm not particularly clear on this "three meal and out thing"...its the equivalent of a drug addict abstaining through a church retreat--odds are they are going back to old habits as soon as given the opportunity. i'm not understanding why she hasnt been moved over to the theraputic component...surely they understand there is more to treating this then just puppy dogs and rainbows, and regardless of their "approach" should have experts available to deal with all aspects of the mental health symptoms that would accompany food phobia, be it with whatever modalities they think are appropriate, combined with medical management--which would include medication monitoring.
it seems to me that its an insurance issue at this point, which i also dont understand. surely you had a prior auth for the theraputic portion....which should still be in effect since she hasnt been in that program yet. it doesnt sound right that a medical based hospital stay would void that auth--how would it differ if you flew out there and she suddenly had appendicitis? if you think you need to stay, that might be a question worth asking of your benefits coordinator.
and i sincerely hope they step up and help you coordinate services back home. i'd make it extremely clear you are having difficulty with local care. followup is one thing--major treatment of a cluster of serious disorders is another. even though you are on another coast, there should be a highly involved social worker helping you coordinate services at home--in fact, they would probably have better luck getting in with people than the averge parent might.
just focus on the most important things--all of the rest can be worked out later.
Jen, have you ever been exposed to any treatment for Obsessive Compulsive Disorder (OCD)? It generally uses something called exposure therapy and can be very very helpful. in my opinion a lot of difficult child's behaviors are anxiety related to the point of Obsessive Compulsive Disorder (OCD). There are a lot of other things mixed in, no doubt at all, but getting a handle on the Obsessive Compulsive Disorder (OCD) using this type of therapy will give her real tools for dealing with this and future problems. Obsessive Compulsive Disorder (OCD) is an anxiety disorder and has specific requirements for treatment. One is that OFTEN a higher dose of medications is needed than is used for other disorders. Wiz has Obsessive Compulsive Disorder (OCD) tendencies. They are mild on the Obsessive Compulsive Disorder (OCD) scale but still hard to handle. He is on a level of medications that few docs are even aware are ever given, but they work well for him and have for several years (knock on wood). Obsessive Compulsive Disorder (OCD) isn't "just" anxiety, it is an extreme degree of anxiety and the behaviors are used to control the anxiety but they don't work and wreck the rest of your life.
A and E used to have a show about this, I think it was called Obsessed. It gave an idea of the process. VH1 just did a show about it last May called "The Obsessive Compulsive Disorder (OCD) Project" (http://www.vh1.com/shows/the_ocd_project/video.jhtml ). Full episodes are available at the link. I haven't seen it, but it might give you some ideas for what to ask of tdocs and psychiatrists who will try to help you. I am actually surprised that they didn't do any of this at the program you are in. It is what I thought would be going on there.
As you call around you may get more help if you ask for docs who are able to treat Obsessive Compulsive Disorder (OCD) rather than asking for those who treat food phobias. Docs are people and like many of us they think of food issues and go to anorxia and bulimia and that type of treatment, when this is NOT going to respond to that. You got some great insight into the situation fromt he people in Portland, and it has been invaluable. To get the long term help you need you are going to have to find something different. Maybe a more Obsessive Compulsive Disorder (OCD) related approach would be a better path to healing for her?
Keep working on things, but as you make calls, ask about this. Also remember to call some of the pediatrician hospitals again. WHile they may not have programs for eating disorders, they often have programs for Obsessive Compulsive Disorder (OCD), so starting to call them again might be really helpful.
I am sorry that this isn't something that will be fixed and then over but is something that she has to fight for a long time. Esp as it has such consequences for her body long term. I hope you can find some resources to help. If you don't have resources by Monday morning, as the hospital to have a social worker help you find and make the appts because you don't know anyone and cannot even get call backs, much less appts. PUSH them, even cry if you need to (hey, sometimes it helps. Use it if you need it, Know what I mean??)
Lots of hugs!
A and E used to have a show about this, I think it was called Obsessed. It gave an idea of the process. VH1 just did a show about it last May called "The Obsessive Compulsive Disorder (OCD) Project" (http://www.vh1.com/shows/the_ocd_project/video.jhtml ). Full episodes are available at the link. I haven't seen it, but it might give you some ideas for what to ask of tdocs and psychiatrists who will try to help you. I am actually surprised that they didn't do any of this at the program you are in. It is what I thought would be going on there.
As you call around you may get more help if you ask for docs who are able to treat Obsessive Compulsive Disorder (OCD) rather than asking for those who treat food phobias. Docs are people and like many of us they think of food issues and go to anorxia and bulimia and that type of treatment, when this is NOT going to respond to that. You got some great insight into the situation fromt he people in Portland, and it has been invaluable. To get the long term help you need you are going to have to find something different. Maybe a more Obsessive Compulsive Disorder (OCD) related approach would be a better path to healing for her?
Keep working on things, but as you make calls, ask about this. Also remember to call some of the pediatrician hospitals again. WHile they may not have programs for eating disorders, they often have programs for Obsessive Compulsive Disorder (OCD), so starting to call them again might be really helpful.
I am sorry that this isn't something that will be fixed and then over but is something that she has to fight for a long time. Esp as it has such consequences for her body long term. I hope you can find some resources to help. If you don't have resources by Monday morning, as the hospital to have a social worker help you find and make the appts because you don't know anyone and cannot even get call backs, much less appts. PUSH them, even cry if you need to (hey, sometimes it helps. Use it if you need it, Know what I mean??)
Lots of hugs!
sooo much great information. wow im slowly reading thru it all. so much to answer and think about lol good keeps me from losing it
Klmno hey how are you? i can see your point, yet as Midwest mom put it and perfectly that the throat muscle tightens during an anxiety attack and/or panic attack. which is exactly what's been going on. most of the kids that have had the food phobia have had it due to choking incident. as with her its' just her underlying anxiety that has caused this due to the remarriage and also the transition into middle school. two huge changes in her mind at ONE time. it is big for a kid like her.
i dont think she's thinking rationally or able to as with most kids with an eating disorder. its' illogical thoughts, fears, etc. that get them to this point. she also as i've stated from removing myself from home and just really sitting back and observing her quietly is a def. mix of so many things as i stated before. for any child to stop giving their body what it needs yes there are some true pyschological issues there. this is such a huge issue larger than anything else we've ever tackled yet to be honest one that feels to me like even though this may come back it's one that is readily solved by simple ingesting food. whereas all the other issues she struggles with are not easily solved by medications, therapy etc. yet as we all know how do i get her to want to continue eating, keep that anxiety down witha child who is even too stubborn to be hypmotized by a guy who is said to be the best in what he does. she does not use her coping skills.
it's like this fine line i will walk with her when home ithink. i dont want to yet i think i have to. when to push, when to pull sort of thing. if i push too hard she'll choke up again no food in. if i dont' push hard enough she wont' grow from this and within it and learn how to handle herself. it's a huge job. as many of us know with our kids the things we've survived.
DDD thanks just some sunshine from you i needed that. greatly appreciated. im running on empty today for sure. we're at our 3 week mark and someone said home to me i'm like a kid with a cookie being dangled right now lol. ill tell you though this experience has taught me some control over my own mind that is often hard back home with my Obsessive Compulsive Disorder (OCD).
confuzzled ok had to read yours again was a bit all over. she is in the theraputic piece now. she was in hospital for two weeks due to damage she did to her body. how can i explain what i dont' get? lol. children with food phobia that have left this clinic apparently from what they've told me and shown me have zero relapse and go on to be just fine. yet as i had mentioned earlier they've never had a multi layered child like mine. they dont' claim to be able to fix all the kids problems just get them eating again. which is what they do. that's why no pyschiatrist on board. i can see their point. in all honesty i've never met a pysch doctor i've truly liked. they complicate matters sometimes. they i believe view this as what it is a medical condition food phobia highly curable. i was shocked when they told me kids eat three meals and fly home. truly shocked. yet these arent' kids with long standing anxiety Obsessive Compulsive Disorder (OCD) bipolar disorders.
maybe having difficult child here has helped them get it. as far as the insurance goes. they have to check in with the insurance weekly. their job with difficult child was to get her to eat they did that. yet they did take a step back as soon as they saw her not eat fully with me and have a bad eating day with them today. right away they met with me and said dependant upon the weekend eating it will be up to your discretion whether or not you think you are comfortable to take her home. they actually said we've gotten to know you and you are very insightful about her and what's going on, you do know her best. i laughed and said umm i am not insightful about her thats why i flew across the country to you guys
i think that other kids and they said they had a few that needed extra support after the food phobia bucked and didnt' eat the food. whereas my kid went in and ate with them without a problem.
Klmno hey how are you? i can see your point, yet as Midwest mom put it and perfectly that the throat muscle tightens during an anxiety attack and/or panic attack. which is exactly what's been going on. most of the kids that have had the food phobia have had it due to choking incident. as with her its' just her underlying anxiety that has caused this due to the remarriage and also the transition into middle school. two huge changes in her mind at ONE time. it is big for a kid like her.
i dont think she's thinking rationally or able to as with most kids with an eating disorder. its' illogical thoughts, fears, etc. that get them to this point. she also as i've stated from removing myself from home and just really sitting back and observing her quietly is a def. mix of so many things as i stated before. for any child to stop giving their body what it needs yes there are some true pyschological issues there. this is such a huge issue larger than anything else we've ever tackled yet to be honest one that feels to me like even though this may come back it's one that is readily solved by simple ingesting food. whereas all the other issues she struggles with are not easily solved by medications, therapy etc. yet as we all know how do i get her to want to continue eating, keep that anxiety down witha child who is even too stubborn to be hypmotized by a guy who is said to be the best in what he does. she does not use her coping skills.
it's like this fine line i will walk with her when home ithink. i dont want to yet i think i have to. when to push, when to pull sort of thing. if i push too hard she'll choke up again no food in. if i dont' push hard enough she wont' grow from this and within it and learn how to handle herself. it's a huge job. as many of us know with our kids the things we've survived.
DDD thanks
just some sunshine from you i needed that. greatly appreciated. im running on empty today for sure. we're at our 3 week mark and someone said home to me i'm like a kid with a cookie being dangled right now lol. ill tell you though this experience has taught me some control over my own mind that is often hard back home with my Obsessive Compulsive Disorder (OCD).confuzzled ok had to read yours again was a bit all over. she is in the theraputic piece now. she was in hospital for two weeks due to damage she did to her body. how can i explain what i dont' get? lol. children with food phobia that have left this clinic apparently from what they've told me and shown me have zero relapse and go on to be just fine. yet as i had mentioned earlier they've never had a multi layered child like mine. they dont' claim to be able to fix all the kids problems just get them eating again. which is what they do. that's why no pyschiatrist on board. i can see their point. in all honesty i've never met a pysch doctor i've truly liked. they complicate matters sometimes. they i believe view this as what it is a medical condition food phobia highly curable. i was shocked when they told me kids eat three meals and fly home. truly shocked. yet these arent' kids with long standing anxiety Obsessive Compulsive Disorder (OCD) bipolar disorders.
maybe having difficult child here has helped them get it. as far as the insurance goes. they have to check in with the insurance weekly. their job with difficult child was to get her to eat they did that. yet they did take a step back as soon as they saw her not eat fully with me and have a bad eating day with them today. right away they met with me and said dependant upon the weekend eating it will be up to your discretion whether or not you think you are comfortable to take her home. they actually said we've gotten to know you and you are very insightful about her and what's going on, you do know her best. i laughed and said umm i am not insightful about her thats why i flew across the country to you guys
i think that other kids and they said they had a few that needed extra support after the food phobia bucked and didnt' eat the food. whereas my kid went in and ate with them without a problem.
it's all baffling to be honest. if i stay in the fight to get her well i dont shake my head. yet if i step out for a second look around at where i am, the children who are so sick around me and there's that little jen piece that says na you dont' belong here this isnt your life. yet it really is. it's really my life. wow is all i gotta say. pretty funny right? i'm sure many of us who have hospitalized or put our kids in residentials etc. did the same thing. i always thought medical illnesses were harder, yet its' all relative. medical is black and white we are always always in the grey all of us.
H
HaoZi
Guest
I think Susie has some good points there, too. The way she put it also gave me some insight as to why I keep getting told mine is Obsessive Compulsive Disorder (OCD), because I'd always looked at the other way around and considered kiddo's anxiety the big issue and didn't see much of what I think of as typical Obsessive Compulsive Disorder (OCD). It sounds like it might be beneficial and easier to find psychiatrists with a background in Obsessive Compulsive Disorder (OCD) who can come at C's issues from a different angle.
BusynMember
Well-Known Member
Obsessive Compulsive Disorder (OCD) is on the anxiety spectrum.
klmno
Active Member
Jen, I didn
't mean to imply that she isn't having some real physical symptoms- like her throat tightening up. My mother has always gotten panic attacks periodically so I get that. However, she, like maybe your daughter, hasn't gotten over them with medications alone. While medications might take the edge off some of it, they haven't made her more susceptible to therapy either- but I don't think she really wants therapy or believes in it for that matter, even though she has a PhD in psychiatric.
't mean to imply that she isn't having some real physical symptoms- like her throat tightening up. My mother has always gotten panic attacks periodically so I get that. However, she, like maybe your daughter, hasn't gotten over them with medications alone. While medications might take the edge off some of it, they haven't made her more susceptible to therapy either- but I don't think she really wants therapy or believes in it for that matter, even though she has a PhD in psychiatric.
H
HaoZi
Guest
klmo, if I don't miss my guess, that's why the singing lessons for her. C may not realize it now (and I'm kind of hoping she doesn't), but the singing lessons will help give her more control over her throat muscles and teach her ways to "warm up" and therefore relax those muscles. Being resistant like she is, giving her a tool for it that she doesn't know is a tool for it is a way to work around the resistance. If that makes any sense.
For some reason, it isn't that easy to find a doctor that treats Obsessive Compulsive Disorder (OCD) right either. You have to look for one that does CBT/ERP (Exposure Response Therapy). When you are calling, ask about ERP for Obsessive Compulsive Disorder (OCD). If they don't know what that is, they are not the right one. I also think it is important to have a therapist that will set up the exposures and do them during the appointment and not just give homework.
There is a Yahoo group for parents of kids with Obsessive Compulsive Disorder (OCD) that is very helpful. It is a lot like this board, but only about Obsessive Compulsive Disorder (OCD). Some of those kids have BiPolar (BP) and other disorders, too, so there are parents there that can share their experience with that.
Obsessive Compulsive Disorder (OCD) is mind boggling. It looks like they should just get past it and do whatever it is they are afraid of. It looks so simple, but it isn't.
My daughter's issue that led us to intensive ERP treatment was that she had recurring thoughts of zombies. She knew there weren't any, but she thought about them following her up the stairs or coming in the room if she was there by herself. She could not get those thoughts out of her head and she was scared, even though, logically, she knew that wasn't going to happen.
She would not stay by herself in a room. If I went to another part of the house, she followed me, in a panic. One of us had to lay down with her while she went to sleep. Eventually, I had to sleep with her. She probably would have acted like your daughter at night if I hadn't. (I am not saying that you should start sleeping with your daughter, only showing how extreme it was for us.) She was 11 when this was going on.
Her ERP therapist came to our house 2 or 3 times a week for 3 hours at a time. He had her go into a room by herself for a few seconds at first, then she worked up to more. He had a zombie doll that she had to take with her when she worked up to that and she was supposed to think about the doll coming to life. She was supposed to feel the anxiety and see that she could cope and that the anxiety would go down, even if she stayed in the room by herself. She started with small exposures that would make her anxious and worked up to bigger ones.
Some people do need medications to be able to do these exercises. At the time, we thought she could not tolerate the SSRI's, so she was doing it without. Eventually, we added a very low dose of Lexapro and something to help her sleep, so this probably contributed to her progress.
Today, she still takes Lexapro and another a/d for sleep but has absolutely no problems staying by herself. She still has other Obsessive Compulsive Disorder (OCD) issues, but nothing as extreme as that problem was.
A different therapist could have said she was needy and demanding of my attention. I had to come up with the Obsessive Compulsive Disorder (OCD) idea myself and look for a doctor who would treat it that way. After treating it as an Obsessive Compulsive Disorder (OCD) thing and not as a need for attention, she doesn't look needy or attention-seeking. To me, that opinion from doctors isn't very helpful. I think the neediness is a symptom and not a cause by itself.
I really think this kind of treatment could help your daughter.
There is a Yahoo group for parents of kids with Obsessive Compulsive Disorder (OCD) that is very helpful. It is a lot like this board, but only about Obsessive Compulsive Disorder (OCD). Some of those kids have BiPolar (BP) and other disorders, too, so there are parents there that can share their experience with that.
Obsessive Compulsive Disorder (OCD) is mind boggling. It looks like they should just get past it and do whatever it is they are afraid of. It looks so simple, but it isn't.
My daughter's issue that led us to intensive ERP treatment was that she had recurring thoughts of zombies. She knew there weren't any, but she thought about them following her up the stairs or coming in the room if she was there by herself. She could not get those thoughts out of her head and she was scared, even though, logically, she knew that wasn't going to happen.
She would not stay by herself in a room. If I went to another part of the house, she followed me, in a panic. One of us had to lay down with her while she went to sleep. Eventually, I had to sleep with her. She probably would have acted like your daughter at night if I hadn't. (I am not saying that you should start sleeping with your daughter, only showing how extreme it was for us.) She was 11 when this was going on.
Her ERP therapist came to our house 2 or 3 times a week for 3 hours at a time. He had her go into a room by herself for a few seconds at first, then she worked up to more. He had a zombie doll that she had to take with her when she worked up to that and she was supposed to think about the doll coming to life. She was supposed to feel the anxiety and see that she could cope and that the anxiety would go down, even if she stayed in the room by herself. She started with small exposures that would make her anxious and worked up to bigger ones.
Some people do need medications to be able to do these exercises. At the time, we thought she could not tolerate the SSRI's, so she was doing it without. Eventually, we added a very low dose of Lexapro and something to help her sleep, so this probably contributed to her progress.
Today, she still takes Lexapro and another a/d for sleep but has absolutely no problems staying by herself. She still has other Obsessive Compulsive Disorder (OCD) issues, but nothing as extreme as that problem was.
A different therapist could have said she was needy and demanding of my attention. I had to come up with the Obsessive Compulsive Disorder (OCD) idea myself and look for a doctor who would treat it that way. After treating it as an Obsessive Compulsive Disorder (OCD) thing and not as a need for attention, she doesn't look needy or attention-seeking. To me, that opinion from doctors isn't very helpful. I think the neediness is a symptom and not a cause by itself.
I really think this kind of treatment could help your daughter.
LittleDudesMom
Well-Known Member
I think one of the reasons there is some misunderstanding here between Jena and some board members is understanding that the clinic where Jena's daughter is being treated primarily deals with food phobia due to choking or vomiting episodes. While anxiety may develop from children who have had an experience with choking and then fear eating, Jena's daughter had the anxiety first.
It is also the philosophy of many doctors who deal with pediatric food phobia issues to deal the the effects of malnutrition before addressing any emotional/behavorial issues. Their philosophy is that it would be counter product to diagnose and treat any psychiatric issue while a child is malnourished. The Maudsley approach does have a belief that addressing these issues before getting a child "physically healthy" leads to "over diagnosis" and "over treatment with dangerous medications". They deal more with the physical than the emotional.
Jena is not in a place where they are going to address and treat the anxiety as we would do. It's getting her out of a physical health crisis. If he can eat for three days on her own, she's done.
For those of us on the board, we deal with psychiatric issues every single day! We see the positives with therapy and medication. It's hard for us to understand how they can say that Jena's difficult child is ready to go home when we see her anxiety still through the roof.
It is also the philosophy of many doctors who deal with pediatric food phobia issues to deal the the effects of malnutrition before addressing any emotional/behavorial issues. Their philosophy is that it would be counter product to diagnose and treat any psychiatric issue while a child is malnourished. The Maudsley approach does have a belief that addressing these issues before getting a child "physically healthy" leads to "over diagnosis" and "over treatment with dangerous medications". They deal more with the physical than the emotional.
Jena is not in a place where they are going to address and treat the anxiety as we would do. It's getting her out of a physical health crisis. If he can eat for three days on her own, she's done.
For those of us on the board, we deal with psychiatric issues every single day! We see the positives with therapy and medication. It's hard for us to understand how they can say that Jena's difficult child is ready to go home when we see her anxiety still through the roof.
B
Bunny
Guest
Jena, I'm so sorry. If there is anything that I can do once you get back home, please let me know.
Pam
Pam
Similar threads
- Confused
- General Parenting
