If you have a child with mental health issues, HELP!

[bethben]

So, my daughter is getting evaluated Monday by a psychologist team and I just need to know what I need to bring up because there is so much.  She was on medication for ADHD and prozac (to keep her from tics and a skin picking habit) but I have taken her off both because the Prozac made her rage and the ADHD medication made her aggressive and angry.  She was irritating other students to the point that 2-3 times a week, someone wanted to beat her up upon which she told them to "bring it on".  The school she goes to has smaller class sizes and is fairly quiet and calm.  She is adopted with unknown birth parent history.  She's 11 and goes to school because I had trauma from raising her to this point.

Today, this was the scenario.  It's a snapshot of all of her issues in one morning.  This does not happen all the time, but separately, all these issues do happen regularly.

Upon getting her up, I tell her again (every morning I do this) that she can't lay around in bed again and needs to get up and dressed by 7:40 am.  The punishment is an extra chore that is written down on a sheet with her daily routine and what is expected from her.  At 7:40, I go up and she's laying on the floor with underwear on.  I get her dressed and she gets mad at me for making her get dressed.

She sits down to eat breakfast.  She tells me she's not hungry and don't I know that if she eats what I've given her, she won't feel well even though she eats the same thing almost every morning and has done fine with it.  I have to constantly redirect her to the breakfast sitting in front of her.  She has no distractions and is just looking around.  After getting her to eat (I think I redirected her at least 5-6 times), she brushes her hair and is told to get her shoes on.  My dh brings her to school and it is now getting a little late.  She goes and sits on the from rug where the shoes are and starts looking into and cleaning out her backpack.  I zip up her backpack, take it away, and redirect her.  She gets angry at me.  She is told to get her shoes on again.  She starts playing with her stuffed animal that she has been told constantly for two years is not allowed downstairs in the morning because she is so distracted by it.  DH is now getting fairly angry because it's late and she's so distracted.  DH is just trying to get all of his stuff together for work and eat breakfast.  Then she remembers her shoes are by the back door after being told to bring them to the front door the previous night --she forgot.  DH thinks she's ignoring him (which is common) and gets even more angry.  I am taking care of my disabled son.   She failed to tell him that her shoes were by the back door.  He yells at her.  She swears at him (kid swear) and calls him a dirty name.  Just fyi, we are not a swearing family--I know she picks it up at school, but we can't discipline it because she will rage which gets us close to an inpatient mental health facility.  Also, disciplining her for the name she called dh will also bring chaos.  She's had 8 hour rage episodes.  

At this point, dh is showing signs of a trauma reaction himself and I step in to try to redirect her to get her shoes on.  She growls at me and then proceeds to sit on the floor refusing to do anything in a pout.  I see her having a trauma reaction herself (breathing hard - angry look).  I tell her that if I have to bring her to school, I will tell them to give her a detention and tell them it was her choice to refuse to go to school on time.  At this point, she decides to go.  As she leaves, she mentions that she's ready to blow up and hurt something.  She will calm down at school because she's away from  us.  

She already goes to after school care because I couldn't deal with her alone.  I have had therapy for PTSD and trauma from raising her that was aggravated by an unknown childhood trauma.  My dh is showing signs of similar PTSD and trauma since he decided to be "bad cop" and give me a break from having to deal with situations like the above.  We have a disabled 20 year old so adjusting schedules to accommodate her chaos is hard.  

What am I looking at?  I'm thinking RAD, but is this also bi-polar?  I know she has ADHD, but medication also keeps her awake which makes things worse.  

[gardenmom5]

I'm dealing with similar with dudeling.   doesn't sound like bipolar to me.  dudeling's been evaluated by multiple people at different times.  add, asd, capd, and anxiety are his biggest issues.

[Jean in Newcastle]

I would let the psychiatrist see exactly what you typed here. 

Has she had a full blood workup to see if there are physical things (food allergies, reactions to dyes, celiac etc) that might be exacerbating the situation?

[bethben]

I am waiting on test results from a full blood workup.  The pediatrician did one and per all blood tests for kids now basically tested for high cholesterol levels, pre-diabetes, and thyroid function along with vitamin d levels.  This is for a very very thin girl.  Stupid.  I went somewhere else who did a full panel of all of the above type tests and we'll see what the results are on Thursday.  I do keep her away from a lot of sugar and make everything almost from scratch.  She is not given food dyes in anything just in case she does react (I don't know since she doesn't eat them).  She begs food from other kids I believe (I've seen wrappers in her lunch box) because "my mom doesn't give me fun food" - per her admission.  But, everything at home is pretty controlled.  So, between the blood work and the psychologist, I should have a better answer?  Maybe I just needed to vent.  

[Scarlett]

At what age did your daughter come to live with your family?

[Hannah]

28 minutes ago, bethben said:

 Maybe I just needed to vent.  

 

(((Hugs)))

[bethben]

10 minutes ago, Scarlett said:

At what age did your daughter come to live with your family?

 

2 1/2 from an orphanage in China with no training on orphan care.  Probably dealing with RAD, but almost wanting something that can be medicated to stop.

[Jean in Newcastle]

Abnormal thyroid function in children can cause weight loss (so her being thin has nothing to do with it being "stupid") and can cause behavior problems. 

[PeterPan]

I'm so sorry this is hard. Is she seeing a pediatric psychiatrist? It sounds like that needs to be up-prioritized right now, because she needs her medications changed to a mix that will work better. She's clearly not on the right meds. She may need to be on a dopamine BLOCKER rather than something that ups dopamine like the ADHD stimulant meds. 

I'm shocked the school is finding her safe. Is she having behaviors there too? 

We've dealt with safety, and for us it was the methyl levels, which we found with genetics. There are psychiatrists doing Genesight testing, and something like that is what you need at this point. 

It might be that bad cop and discipline aren't working at this point. Of course probably nothing will work well till her body is calmed down. Have you ever tried niacin on her? Works super fast and is stupid cheap. My ds weighs 75 pounds and I started him with a 10mg dose via gummies and then a 25mg sublingual tablet that she can chew or swallow.                                             Kal 25 Mg Niacin Tablets, Strawberry, 200 Count                                       When we were calming my ds' body down, we did the 10mg dose every hour. He was maybe 60-65 pounds then. Now if he's having problems I would do 25mg every hour.

Is she fighting a bug? When my ds gets a virus, high methyl levels go through the roof. It's a very dangerous time. Also if she has been eating something high in caffeine, like easter candy (chocolate) or maybe oranges, those would also be methyl donors that would make behaviors go through the roof.

Again, in the scheme of things, a trial of niacin in cheap, easy to administer, and not likely to harm her. It could happen that the has MTHFR defects along with the COMT (which is what's possibly driving her aggression) and then she might get tired, not a biggee. But the odds of that are low. Is this WORSE than it has been? I'd definitely be looking at diet and the holidays to see what aggravated it.

Adding: for adult sized body, she could start with a 100mg capsule. That's what I take. Don't go over that but rather do the 100mg each hour and see what happens. Should be pretty radical. Also, I have my ped write a scrip for emergencies. Hydroxizine, something to end it. I also keep Calm Child (chamomile) on hand. Some chamomile tea might take the edge off enough. I'm pretty pragmatic with safety.

Edited April 23, 2019 by PeterPan

[Pronghorn]

If she behaves dramatically worse for you than others, I would think there is an attachment disorder in the mix. You might look into neurofeedback, neuroreorganization, emdr. Have you read Nancy Thomas and other writers on attachment? There is probably a good reading list at attach-china.org. I would also suggest you get a professional with attachment experience to help you. And try to get som e help for the stress all this has on you.

[Pen]

Agree with a lot of what was written above.

print out your own posts for what to tell the person on Monday

———

other things perhaps to do

I also have seen high amounts of niacin (or niacinamide to avoid flush) be very helpful

 

and I’ve seen approaches which go to a big warm poncho and slip on boots to go over pjs to avoid getting dressed battles

or other approaches for fewer battles   Which you already did one major one sending her to school

[TravelingChris]

As a few posters have said here, it could be so many things.  Gardenmom described how it sounds like dudeling who has no attachment issues, but other diagnoses.  I will chime in that my sister started exhibiting signs of the bipolar she was much later diagnosed with around 11 too.  And extreme anger and some of the other behaviors remind me of her.    Attachment issues could definitely play a part.

 

I really hope the psychiatrist will help you,  Hugs to you.

[MercyA]

Oh, hon. The only thing I have any personal experience with is OCD, and skin picking can be a symptom. I take Luvox (fluvoxamine)--an antidepressant--for my OCD and it's also approved for pediatric use. It works very well and has the added benefit of making me much more mellow. 😉 I agree with others who have said that it sounds like new meds are needed.

Huge hugs.

[Ottakee]

Do the gene test for meds.  I would question a mood disorder.  It is very common for kids with mood disorders to respond negatively to adhd meds and antidepressants.  Write down everything you can think of....all those little pieces help solve the bigger puzzle.

[Ravin]

My DD has a mood disorder, and we have had to be careful about what ADHD meds she takes. Some are flat-out not good options when there are other issues. She has also always taken them along with other psych meds. Currently she takes focalin, which works well for her, and she's on 3 other meds for anxiety/mood. 

My younger brother who is adopted (and drug-exposed in utero to meth) has ADHD with rage issues, but has been doing very well with the right other psych med put together with the ADHD medication. 

At the eval, be honest, make sure they get a very complete history, and hopefully they can help you find some better solutions!

[kristin0713]

Has she always had these issues?  Always had the OCD?  If there was ever a time when she was healthy and then seemed to change dramatically pretty quickly, I'd encourage you to consider PANS/PANDAS.

[Pen]

Women's 5-Way Knit Poncho Sweater Pullover Topper, 100% Organic Cotton Super Soft Lightweight All-Season (Blush Pink) https://www.amazon.com/dp/B07P9KRXZ5/ref=cm_sw_r_cp_api_i_E11VCbXV7M9GP

something like this (which maybe could be homemade for less $$)  can go over pjs or underwear and be “clothes” (especially for a girl so long as dress length) along with pull on boots    Or we had kids going to school just in pjs if they didn’t want to change

if sensory is an issue it also can be a help that way

[Ottakee]

It doesn't solve the mental health questions but mine shower at night and sleep in Clean clothes.  One less morning battle.

[Pen]

27 minutes ago, Ottakee said:

It doesn't solve the mental health questions but mine shower at night and sleep in Clean clothes.  One less morning battle.

 

That reminds me of another foster strategy of having pull on sweatpants (or shorts in summer) , and t-shirts as basic clothes for kids who object to getting dressed — acceptable out in public as clothes and also work as pjs.  

Doesnt solve basic issues but can limit the start to every day being dressing trauma

similarly : making hair styles short and not needing anything to get out the door

 

Edited April 23, 2019 by Pen

[Pen]

I’d probably try to get ready as many things as possible the night before—backpack in car, etc to try to get rid of morning battles.  I probably would not battle the breakfast either.

 If she says she’s not hungry, send something to school in case she gets hungry.  

And i’d Probably make the stuffed animal a reward for minimum readiness like (maybe teeth brushed) shoes on ready to go out door, rather than punishments for not doing X.

[dirty ethel rackham]

5 hours ago, bethben said:

So, my daughter is getting evaluated Monday by a psychologist team and I just need to know what I need to bring up because there is so much.  She was on medication for ADHD and prozac (to keep her from tics and a skin picking habit) but I have taken her off both because the Prozac made her rage and the ADHD medication made her aggressive and angry.  She was irritating other students to the point that 2-3 times a week, someone wanted to beat her up upon which she told them to "bring it on".  The school she goes to has smaller class sizes and is fairly quiet and calm.  She is adopted with unknown birth parent history.  She's 11 and goes to school because I had trauma from raising her to this point.

Today, this was the scenario.  It's a snapshot of all of her issues in one morning.  This does not happen all the time, but separately, all these issues do happen regularly.

Upon getting her up, I tell her again (every morning I do this) that she can't lay around in bed again and needs to get up and dressed by 7:40 am.  The punishment is an extra chore that is written down on a sheet with her daily routine and what is expected from her.  At 7:40, I go up and she's laying on the floor with underwear on.  I get her dressed and she gets mad at me for making her get dressed.

She sits down to eat breakfast.  She tells me she's not hungry and don't I know that if she eats what I've given her, she won't feel well even though she eats the same thing almost every morning and has done fine with it.  I have to constantly redirect her to the breakfast sitting in front of her.  She has no distractions and is just looking around.  After getting her to eat (I think I redirected her at least 5-6 times), she brushes her hair and is told to get her shoes on.  My dh brings her to school and it is now getting a little late.  She goes and sits on the from rug where the shoes are and starts looking into and cleaning out her backpack.  I zip up her backpack, take it away, and redirect her.  She gets angry at me.  She is told to get her shoes on again.  She starts playing with her stuffed animal that she has been told constantly for two years is not allowed downstairs in the morning because she is so distracted by it.  DH is now getting fairly angry because it's late and she's so distracted.  DH is just trying to get all of his stuff together for work and eat breakfast.  Then she remembers her shoes are by the back door after being told to bring them to the front door the previous night --she forgot.  DH thinks she's ignoring him (which is common) and gets even more angry.  I am taking care of my disabled son.   She failed to tell him that her shoes were by the back door.  He yells at her.  She swears at him (kid swear) and calls him a dirty name.  Just fyi, we are not a swearing family--I know she picks it up at school, but we can't discipline it because she will rage which gets us close to an inpatient mental health facility.  Also, disciplining her for the name she called dh will also bring chaos.  She's had 8 hour rage episodes.  

At this point, dh is showing signs of a trauma reaction himself and I step in to try to redirect her to get her shoes on.  She growls at me and then proceeds to sit on the floor refusing to do anything in a pout.  I see her having a trauma reaction herself (breathing hard - angry look).  I tell her that if I have to bring her to school, I will tell them to give her a detention and tell them it was her choice to refuse to go to school on time.  At this point, she decides to go.  As she leaves, she mentions that she's ready to blow up and hurt something.  She will calm down at school because she's away from  us.  

She already goes to after school care because I couldn't deal with her alone.  I have had therapy for PTSD and trauma from raising her that was aggravated by an unknown childhood trauma.  My dh is showing signs of similar PTSD and trauma since he decided to be "bad cop" and give me a break from having to deal with situations like the above.  We have a disabled 20 year old so adjusting schedules to accommodate her chaos is hard.  

What am I looking at?  I'm thinking RAD, but is this also bi-polar?  I know she has ADHD, but medication also keeps her awake which makes things worse.  

I'm so sorry you are going through this.  I don't have a lot of answers for you because my kid's mental health issues are different.  But, regarding the bolded, did you wean her off these meds or stop abruptly?  Stopping an SSRI abruptly can cause some really big psychiatric issues.  I don't have experience with ADHD meds.  

Regarding RAD, sometimes, they save their worst behavior for mom and dad because they are the safe people, people they are firmly attached to rather than not attached.  My kid could hold it together in public, but would rage at home.  Some people would tell me it was because I was "too soft."  But I could actually watch my child start unravelling the closer we got to home.  It was as all this pressure had built up while out in public and the closer we got to the "safe place", the closer we were to the cork blowing!  

I hope you can find solutions.  

 

[beaners]

I agree with everyone else that you need better medication management. You can have both attachment issues and other mental health issues. Not everything is RAD of course. I have a son with severe mental health issues but no attachment concerns, and doctors try to label RAD as soon as they see the word adopted. It doesn't fit him. I do see the possibility in things you say here though. You also said that simple things were bringing her close to inpatient level. As much I hate the disruption of inpatient stays, they are a good option to get immediate medication changes put in place and faster access to resources.

[Storygirl]

Skipping to post after reading the OP and not the responses (yet).

What you described is very like DS15, although he does not have rages that last hours. He has ADHD, anxiety, NVLD, Tourettes, ODD, and is going to be evaluated for ASD. He was also adopted.

I hope you can get some good help. I would ask them about autism, and perhaps fetal alcohol sydrome, as well as attachment issues, in addition to whatever mental health issues you suspect.

Except for the raging, the description of your morning sounds very much like what we go through. DS gets angry and storms about, but does not do anything violent or scary. Most of his behavior I think is the ADHD plus social thinking (the NVLD/ ASD -- he can't see things from anyone else's point of view). I think the extreme rages are the outliers in what you describe.

Ask about trying other medications. DS was angry and horrible on Adderall, but he really benefits from other ADHD meds and is much easier to live with when he is taking them. If you have not tried other meds, it really is worth doing so.

Also, write down everything, so that you can hand it in at the intake meeting. That way, if you forget to say something (and there is always a lot to say, so I always forget), they will see it in your notes.

[Storygirl]

I'm not sure it is helpful for me to offer any tips in this thread, because I mostly want to offer support. But I will say that we had counseling and specifically worked hard on what we could do to make mornings look better at our house. It was helpful to break every part of what we do down into tiny pieces and examine what could be done differently.

[bethben]

1 hour ago, Pen said:

Women's 5-Way Knit Poncho Sweater Pullover Topper, 100% Organic Cotton Super Soft Lightweight All-Season (Blush Pink) https://www.amazon.com/dp/B07P9KRXZ5/ref=cm_sw_r_cp_api_i_E11VCbXV7M9GP

something like this (which maybe could be homemade for less $$)  can go over pjs or underwear and be “clothes” (especially for a girl so long as dress length) along with pull on boots    Or we had kids going to school just in pjs if they didn’t want to change

if sensory is an issue it also can be a help that way

It's a uniform school.  She can actually get detention for it which she hates but would be someone else giving out the punishment which may help.  She would kick and scream all the way to the car if we made her go in her pajamas.

[bethben]

45 minutes ago, dirty ethel rackham said:

I'm so sorry you are going through this.  I don't have a lot of answers for you because my kid's mental health issues are different.  But, regarding the bolded, did you wean her off these meds or stop abruptly?  Stopping an SSRI abruptly can cause some really big psychiatric issues.  I don't have experience with ADHD meds.  

 

We weaned her off of the SSRI gradually per the doctor's instructions.  The ADHD medication is short acting so getting off of it just meant stop taking it the next morning.

 

[bethben]

23 minutes ago, Storygirl said:

Skipping to post after reading the OP and not the responses (yet).

What you described is very like DS15, although he does not have rages that last hours. He has ADHD, anxiety, NVLD, Tourettes, ODD, and is going to be evaluated for ASD. He was also adopted.

I hope you can get some good help. I would ask them about autism, and perhaps fetal alcohol sydrome, as well as attachment issues, in addition to whatever mental health issues you suspect.

Except for the raging, the description of your morning sounds very much like what we go through. DS gets angry and storms about, but does not do anything violent or scary. Most of his behavior I think is the ADHD plus social thinking (the NVLD/ ASD -- he can't see things from anyone else's point of view). I think the extreme rages are the outliers in what you describe.

Ask about trying other medications. DS was angry and horrible on Adderall, but he really benefits from other ADHD meds and is much easier to live with when he is taking them. If you have not tried other meds, it really is worth doing so.

Also, write down everything, so that you can hand it in at the intake meeting. That way, if you forget to say something (and there is always a lot to say, so I always forget), they will see it in your notes.

I am writing down everything from the past six months.  The rages, what they looked like, the inattention, the reaction to the medications, the behaviors, ---everything.  I have quite the list.  

[Pen]

Just now, bethben said:

It's a uniform school.  She can actually get detention for it which she hates but would be someone else giving out the punishment which may help.  She would kick and scream all the way to the car if we made her go in her pajamas.

 

Ah. Uniform makes it harder .

Perhaps showing up in pjs and getting detention is a reasonable option though.  If she’s capable of dressing herself or cooperating with you to get dressed if she’s unable to self dress then her choice to do that or else to go in pjs and deal with detention. Her choice to have uniform on or not—not you making her.

can she tell time?  

Have you read The Explosive Child and tried the methods in that?

[SKL]

I wish I had some great advice, but it sounds like you are dealing with pretty serious stuff.  I assume you have looked into having her meds re-adjusted for what that's worth.

In the short run, I would probably arrange things so as little as possible rides on your daughter's cooperation / responsibility in the morning.  For example, have her shoes / bookbag in the car the night before, and some slip-ons by the door so there is no drama at home about final preparations.  She can put her shoes on in the car or go to school in her slippers.  If possible, have her driven there by someone who doesn't have a time issue - if she's late, it isn't anyone else's problem.  As far as breakfast, is it possible she has an unknown allergy or sensitivity?  I would just offer her a few choices that you know she can eat, and also keep a box of dry cereal in the car in case she refuses to cooperate at the breakfast table.  She can also take her special toy in the car rather than waste time playing with it before leaving to go to school.

The school should have something to offer as far as controlling her behaviors there.  I am sure some teachers on this board have advice on that.

Do you have a school or camp for her to attend during the summer? 

I will say, my kid with a somewhat similar (but milder) background turned a corner as she approached age 12.  So hormones definitely play a role.  We still have lots of challenges, but she is more often willing to make an effort to act right.

I wish you all the best.  I hope she turns a corner soon.

[Innisfree]

First, lots of hugs.

This sounds very similar to some periods in my younger dd's life. She has autism, mood disorder, depression and anxiety diagnoses. But, as an advocate we're using says, "The autism drives the bus." The lack of social understanding and accumulated stresses increase the anxiety and depression .

Back before we got the autism diagnosis, life was very, very hard. We had dealt with multiple therapists, multiple medications, nothing was really working. It was rough. We had rages that lasted hours, defiance, oppositional behavior. I actually started to get recommendations for inpatient facilities.

Since nothing the therapists were telling us worked, we finally came up with our own approach. We started envisioning her capacity to deal with stress as a very small bucket. When her bucket was full, she couldn't take anymore of *anything*. No hugging, no sympathetic words, no demands, no punishments. Nothing. When she was raging, she tended to push on me, so I'd get to a soft safe spot on the sofa and just endure. She'd pull cushions out from around me and haul them around, she'd tear and toss and push, and we would just try to ignore her.

Believe it or not, this was better than trying to isolate her in her room, like one therapist had suggested, or punish her, like another had recommended. The rages ended faster if we didn't feed them with more demands on her. Her bucket just couldn't take us adding stress. Punishment was like throwing kerosene on a fire.

The phrase "kids do well when they can", from The Explosive Child, helped me a lot. That whole book helped-- have you read it? I needed to see her rages as being out of her control, at least at that point. Control is a work in progress.

Has she had an ASD evaluation?

What ultimately helped most was ABA, which we were able to get after the autism diagnosis. That helped end the rages. She still loses control sometimes, but it's on an entirely different level, much calmer overall.

If autism is an issue, then the transition involved in going to school would be a natural flashpoint. School uniforms might be causing sensory problems, or they might just be part of the transition.

1 hour ago, dirty ethel rackham said:

Regarding RAD, sometimes, they save their worst behavior for mom and dad because they are the safe people, people they are firmly attached to rather than not attached.  My kid could hold it together in public, but would rage at home.  Some people would tell me it was because I was "too soft."  But I could actually watch my child start unravelling the closer we got to home.  It was as all this pressure had built up while out in public and the closer we got to the "safe place", the closer we were to the cork blowing!  

This was the same for us, even though our issue is not RAD. I think it's pretty common across diagnoses. The advice we got to be more consistently firm with consequences was utterly wrong, because the behavior was out of her control at the moment it happened. She had used up all her control trying to stay calm in public, and she had no reserves left.

Praise at good moments, working hard to build positive relations, and rewarding good behavior were more effective than punishments for us.

If she hasn't had the ADOS evaluation for autism, it might be worth trying.

Edited April 23, 2019 by Innisfree

[Pen]

The son of a friend had food reaction rages.  Particularly gluten reaction. I doubt that’s a major part of problem in your dd, but could be one piece.

it could be that not feeling well after foods as she told you is real not bogus

perh aps when she’s not reacting/ raging she could explain 

[Pen]

 

1 hour ago, dirty ethel rackham said:

Regarding RAD, sometimes, they save their worst behavior for mom and dad because they are the safe people, people they are firmly attached to rather than not attached.  My kid could hold it together in public, but would rage at home. 

 

That can happen with all all sorts of problems, not just RAD.  

It’s what a lot of adults do too— hold it together in public, then decompensate at home. 

So spouse, kid, family pet may get brunt of distress, not strangers, coworkers 

For kids it’s parents and siblings and pets who often take the brunt

[Laurie]

19 minutes ago, Pen said:

The son of a friend had food reaction rages.  Particularly gluten reaction. I doubt that’s a major part of problem in your dd, but could be one piece.

it could be that not feeling well after foods as she told you is real not bogus

perh aps when she’s not reacting/ raging she could explain 

This is what I was thinking, too.  My daughter is already gluten free but I recently discovered that applesauce (unsweetened and organic) makes her really belligerent!   

Even if bethben's daughter is eating "healthy" foods,  she could be sensitive to something like salicylates (Feingold diet would explain this) or something else like gluten.  My daughter has chronic digestive issues and has seen a GI doctor who recommended a low FODMAP diet.   

I agree that feeling bad after eating is something to look into, especially since it sounds like she eats pretty much the same thing for breakfast each day.   

[Pronghorn]

27 minutes ago, Pen said:

 

 

That can happen with all all sorts of problems, not just RAD.  

It’s what a lot of adults do too— hold it together in public, then decompensate at home. 

So spouse, kid, family pet may get brunt of distress, not strangers, coworkers 

For kids it’s parents and siblings and pets who often take the brunt

I think the difference in behavior with parents and without parents is often unusually pronounced in children with RAD. Also, in RAD, it is NOT because the parents are safer but because they actually feel less safe. They have some level if attachment to parents, which means the parents could hurt them emotionally more than a stranger could.

 

Edited April 23, 2019 by Pronghorn

[hippiemamato3]

Sounds like it could be RAD. I'm very familiar with it. Ugh. 

[Pen]

1 hour ago, Pronghorn said:

I think the difference in behavior with parents and without parents is often unusually pronounced in children with RAD. Also, in RAD, it is NOT because the parents are safer but because they actually feel less safe. They have some level if attachment to parents, which means the parents could hurt them emotionally more than a stranger could.

 

 

That’s true, and certainly having been adopted from China at age 2 brings RAD to mind.   (Eta, I’ve read that adoptions past age 2 from orphanages have as much as 50% chance of RAD.  Otoh, some can be successful in establishing bonding even for teens, )

 

However, it isn’t clearly diagnostic that the child acts out more with parents. (That could be other issues too like PTSD, or even possibly celiac or Pandas type physical problems)

 I think the evaluation is in part to determine if there’s something else (or several) other than RAD. Or in addition.

 

There was an interesting This American Life program about a RAD boy , now grown and with more perspective, who thought mistakenly that the adopting parents were the same parents who had left him in the terrible orphanage.  

Edited April 23, 2019 by Pen

[Jyhwkmama]

Have you tried Intuniv. It has been very helpful to my child with PDDNOS and ADHD.

[Pen]

I think @bethben if you could find help for your own PTSD that would also be huge!

for you especially, but also for your family 

[73349]

2 hours ago, Pen said:

The son of a friend had food reaction rages.  Particularly gluten reaction. I doubt that’s a major part of problem in your dd, but could be one piece.

it could be that not feeling well after foods as she told you is real not bogus

perh aps when she’s not reacting/ raging she could explain 

Being thin is also sometimes a tipoff to celiac disease, which tends to "cluster" with ASD and OCD. (And being thin also does not prevent high cholesterol--for my DS and me, it's correlated with exercise but apparently nothing else--so getting it checked won't hurt.)

Beth, I hope you find something helpful very soon.

[kbutton]

2 hours ago, Innisfree said:

First, lots of hugs.

This sounds very similar to some periods in my younger dd's life. She has autism, mood disorder, depression and anxiety diagnoses. But, as an advocate we're using says, "The autism drives the bus." The lack of social understanding and accumulated stresses increase the anxiety and depression .

Back before we got the autism diagnosis, life was very, very hard. We had dealt with multiple therapists, multiple medications, nothing was really working. It was rough. We had rages that lasted hours, defiance, oppositional behavior. I actually started to get recommendations for inpatient facilities.

Since nothing the therapists were telling us worked, we finally came up with our own approach. We started envisioning her capacity to deal with stress as a very small bucket. When her bucket was full, she couldn't take anymore of *anything*. No hugging, no sympathetic words, no demands, no punishments. Nothing. When she was raging, she tended to push on me, so I'd get to a soft safe spot on the sofa and just endure. She'd pull cushions out from around me and haul them around, she'd tear and toss and push, and we would just try to ignore her.

Believe it or not, this was better than trying to isolate her in her room, like one therapist had suggested, or punish her, like another had recommended. The rages ended faster if we didn't feed them with more demands on her. Her bucket just couldn't take us adding stress. Punishment was like throwing kerosene on a fire.

The phrase "kids do well when they can", from The Explosive Child, helped me a lot. That whole book helped-- have you read it? I needed to see her rages as being out of her control, at least at that point. Control is a work in progress.

Has she had an ASD evaluation?

What ultimately helped most was ABA, which we were able to get after the autism diagnosis. That helped end the rages. She still loses control sometimes, but it's on an entirely different level, much calmer overall.

If autism is an issue, then the transition involved in going to school would be a natural flashpoint. School uniforms might be causing sensory problems, or they might just be part of the transition.

This was the same for us, even though our issue is not RAD. I think it's pretty common across diagnoses. The advice we got to be more consistently firm with consequences was utterly wrong, because the behavior was out of her control at the moment it happened. She had used up all her control trying to stay calm in public, and she had no reserves left.

Praise at good moments, working hard to build positive relations, and rewarding good behavior were more effective than punishments for us.

If she hasn't had the ADOS evaluation for autism, it might be worth trying.

I can't like this post enough.

Also, there are some overlaps in techniques for dealing with autism and RAD. On a nitpicky precise definition level, I am over-generalizing. On a parent-to-parent level, when I talk to adoptive parents IRL, a lot is the same. 

I know NOTHING about this blog, but this post intrigued me and is part of a series: https://cuspemergence.com/2018/02/26/part-12-in-trauma-informed-behavior-analysis-whats-behavioral-about-treating-reactive-attachment-disorder/

 

[maize]

Do you know if she is lactose intolerant? A high percentage of East Asians are.

[bethben]

20 minutes ago, maize said:

Do you know if she is lactose intolerant? A high percentage of East Asians are.

She has always seemed to do fine with dairy as long as it has been fermented or has enzymes.  I’m thinking cheese, kefir, or sour cream. Straight milk has in the past given her ear infections so she stays away from that.  I also knew about that tendency so I watched for it when she was younger.

[Pen]

1 hour ago, bethben said:

She has always seemed to do fine with dairy as long as it has been fermented or has enzymes.  I’m thinking cheese, kefir, or sour cream. Straight milk has in the past given her ear infections so she stays away from that.  I also knew about that tendency so I watched for it when she was younger.

 

While lactose intolerance usually iirc manifests as gastrointestinal type trouble, I don’t think “doing fine” fits your dd.  And Asians don’t commonly eat milk products even when fermented (and presumably lactase broken down) as Europeans do.  

Casein could also be a problem   Or perhaps other things in the dairy.  There was a whole issue about types of proteins that I no longer recall the details of, but where most Nort American cows have something that a lot of French don’t , causing reactions to milk and it’s products even for people of European origins  ETA  A1 versus A2 milk

“Although lactose intolerance usually begins when you’re around age two, it isn’t until you reach adolescence or adulthood that the symptoms typically appear for many people. “

(Sorry link lost)

if she commonly is being pushed to eat items that do really make her feel even somewhat unwell, that’s going to put a strain on how she feels emotionally as well as physically—even if direct emotional feelings aren’t the result.  

Edited April 24, 2019 by Pen

[bethben]

35 minutes ago, Pen said:

 

While lactose intolerance usually iirc manifests as gastrointestinal type trouble, I don’t think “doing fine” fits your dd.  And Asians don’t commonly eat milk products even when fermented (and presumably lactase broken down) as Europeans do.  

Casein could also be a problem   Or perhaps other things in the dairy.  There was a whole issue about types of proteins that I no longer recall the details of, but where most Nort American cows have something that a lot of French don’t , causing reactions to milk and it’s products even for people of European origins  ETA  A1 versus A2 milk

“Although lactose intolerance usually begins when you’re around age two, it isn’t until you reach adolescence or adulthood that the symptoms typically appear for many people. “

(Sorry link lost)

if she commonly is being pushed to eat items that do really make her feel even somewhat unwell, that’s going to put a strain on how she feels emotionally as well as physically—even if direct emotional feelings aren’t the result.  

This is a child who can eat gallons of mac and cheese or pasta with alfredo sauce with no gastro issues.  Always has been able to.  Her most favorite soup is a creamy wild rice soup heavy on the cream. 

[Pen]

30 minutes ago, bethben said:

This is a child who can eat gallons of mac and cheese or pasta with alfredo sauce with no gastro issues.  Always has been able to.  Her most favorite soup is a creamy wild rice soup heavy on the cream. 

 

It may be that she’s fine with it. 

But this doesn’t necessarily mean it isn’t a problem .  

Any number of celiac people have had something with gluten (cake, Mac and cheese) be a favorite food.  

 

ETA even without RAD or a dairy, gluten, etc problem, food issues are common in kids from insecure backgrounds.  It can be a control issue, or due to food inadequacy in infancy, or other problems.  

 

Edited April 24, 2019 by Pen

[BeachGal]

She may have some sort of developmental trauma which affected how her nervous system developed. It sounds like her sympathetic nervous system is activated quite often and she has difficulty moving out of that system. It is physiological. If you can find a therapist who understands the autonomic nervous system, including Stephen Porges’ Polyvagal Theory, that could be helpful. The goal would be to retune your daughter’s nervous system. The Polyvagal Theory is complicated to explain but there are some YouTube videos that simplify how it works in therapy for attachment issues, autism, anxiety, adhd, etc.

To help retune the nervous system, Stephen Porges has developed a therapy called the Safe and Sound Protocol which has helped children who have the behavior issues that you’re describing. I’ll link one of his books and if you go down to the reviews, the second one was written by someone who used the Safe and Sound Protocol to treat her child who was close to being moved into a residential facility. She mentions that she runs a Facebook group so maybe you could join the group.

https://www.amazon.com/Pocket-Guide-Polyvagal-Theory-Transformative/dp/0393707873

https://integratedlistening.com/ssp-safe-sound-protocol-clinical-resources/

Quote

This non-invasive intervention involves listening to music that has been processed specifically to retune the nervous system (regulating state) to introduce a sense of safety and the ability to socially engage. This allows the client to better interpret not only human speech, but, importantly, the emotional meaning of language. Once interpersonal interactions improve, spontaneous social behaviors and an enhanced ability to learn, self-regulate and engage are often seen.

 

[moonflower]

given that so many east asians are lactose intolerant, I'd definitely give a no-dairy trial a go

I''m not saying it's likely the cause of all of her difficulties, far from it - but doing what you can around the margins, esp. when it is something as concrete and (imo) likely as lactose intolerance, could at least make her life more manageable for her

[Melissa in Australia]

HUGE HUGS

we have similar issues- I get it.. I hear you. every day is a challenge

deleted some personal information

We are looking into the possibility of FASD as the overriding condition. ( meaning the peadiatrician suggested it. I am afraid to say I hadn't hear of it until then)

Unfortunately here in Aus FASD has only been recognised  for 4 years - hardly any medical professionals know much about it. 

from my very small self teaching about FASD it seems that a lot of the techniques used to help with all the other diagnoses will not work with FASD. they need very specific therapy.

I will try and attach a chart that shows the overlapping behavioural  character

FASD chart.pdf

Edited April 24, 2019 by Melissa in Australia

[KidsHappen]

14 hours ago, bethben said:

 

2 1/2 from an orphanage in China with no training on orphan care.  Probably dealing with RAD, but almost wanting something that can be medicated to stop.

To give you some hope, it sounds very similar to one of my dd and she was not adopted. She was medicated for about ten years but is a fully functioning adult on no medications who manages well most of the time under average conditions.

[PeterPan]

9 hours ago, bethben said:

This is a child who can eat gallons of mac and cheese or pasta with alfredo sauce with no gastro issues.  Always has been able to.  Her most favorite soup is a creamy wild rice soup heavy on the cream. 

I would pull her off those then, just to see what happens. There are other things milk does besides affecting the gut. For my ds and dd they can cause that kind of out of control behavior you're describing. I think I read some kind of chemical explanation in Gut Psychology Syndrome about why, but basically it was something from the milk going into the brain. And her craving of milk is so conspicuous I'd just take her off for a week and see what happens. Right now, you can't isolate it. It's definitely an issue with my kids. When they're off it in general, they can have a dab here or there and be fine. But all the time like that? Yeah, it would be part of the explanation of the behavior.

Coconut milk is really good for you, and my kids both like Silk brand almond milk. And I'm not even saying make a big deal of it or announce it or make it traumatic, because when people think they're losing things it's a big deal. Just quietly change the meal plans for the week, chop out the milk, see what happens. So like around here, that means ds had fish, steamed broccoli, and tomatoes for dinner. Night before was chicken drumsticks and salad. Lunches are baked potatoes, rice/carrots/limas, that kind of thing. He only gets milk rarely because it's THAT BIG a deal for his behavior. But it's never gut symptoms, always behavior.

Edited April 24, 2019 by PeterPan