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bethben

S/o child with mental Health issues and Epstein Barr

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So my dd's blood work came back.  According to the blood work, she is great in all vitamin levels.  She shows allergies to dairy, eggs, and peanuts.  Obviously none of these are life-threatening allergies but enough to maybe make her feel bad.  The big shock was that she has quite the high range for the Epstein Barr Virus.  The doctor told me that she may have had it since before we got her since I don't recall anytime in her life that she was sick for a long period of time.  It's not an active virus anyway.  This past school year she did have a strep throat infection that was pretty hard to treat.  I'm not sure it's related.  

Anyone know about this?  

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6 minutes ago, bethben said:

So my dd's blood work came back.  According to the blood work, she is great in all vitamin levels.  She shows allergies to dairy, eggs, and peanuts.  Obviously none of these are life-threatening allergies but enough to maybe make her feel bad.  The big shock was that she has quite the high range for the Epstein Barr Virus.  The doctor told me that she may have had it since before we got her since I don't recall anytime in her life that she was sick for a long period of time.  It's not an active virus anyway.  This past school year she did have a strep throat infection that was pretty hard to treat.  I'm not sure it's related.  

Anyone know about this?  

Did they test her for mono when they tested her for strep?  My ds19 was really sick in January and the first trip to the doctor he tested for Strep.  2 days later I had to take him back in...this time he was so sick he couldn't drive himself.  The doctor thought something else was going on and he said although it would be highly unlikely to have strep AND mono he still tested him and ds came back positive for mono.  

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Most people come back with positive results for Epstein Barr. (Something like 90% I think?). Unless it is active and chronic, it shouldn’t affect her. 

 

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No test for mono since she’s 11 and it’s usually off the radar at that age I’m assuming.  She has ADHD so her sick may be another kid’s normal.

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She could have had EBV long ago or when she had strep.

I suggest you get her checked for celiac:

 

The virus that causes mononucleosis might also increase the risk for celiac disease and six other autoimmune conditions, a new study suggests. Epstein-Barr is a common virus that causes “mono,” a condition marked by extreme fatigue, sore throat, body aches and swollen lymph nodes.Apr 19, 2018

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What vitamins did they check? Being great for D in a Northern geographical location seems unusual in spring.  

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1 hour ago, bethben said:

he shows allergies to dairy, eggs, and peanuts.  Obviously none of these are life-threatening allergies but enough to maybe make her feel bad

 

https://www.foodallergy.org/life-with-food-allergies/food-allergy-101/food-allergy-myths-and-misconceptions

 

Fact: Food allergy reactions are unpredictable. The way your body reacts to a food allergen one time cannot predict how it will react the next time. You don’t know if a reaction is going to be mild, moderate or severe. You should always be prepared with emergency medication, just in case.

Myth: A food allergy that has only caused mild reactions is a mild food allergy.

Fact: There are no mild or severe food allergies—only mild to severe reactions. What caused a mild reaction in the past may lead to a severe reaction in the future, and vice versa. Never let your guard down.”

 

“Fact: Milk and eggs are actually the most common food allergies in children—although peanuts do get a lot of attention for causing severe reactions.

All food allergies, no matter how common or rare, are serious.”

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Mar 17, 2016 · How Allergies Interfere With Learning and Behavior ... But one of the biggest problems is the inflammation response that is ... with food allergies that could cause disruptions and poor behavior in the ...
 
 
——-
 
re the most easily distinguished but other allergens can cause behavior issues, too, including pet dander, dust, feathers and cleaning agents.
 
 
Food allergies may impact behavior through a combination of physical discomfort ... Behavioral symptoms such as sudden anger, aggression, tantrums, mood ...
 
 
Jul 24, 2017 · The following five foods are the most common contributors to mood and behavioral changes in children. Dairy. ... Many children become irritable, cranky, or aggressive. Children with dairy allergies or intolerance also tend to suffer from frequent colds and ear infections.
 
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1 hour ago, Pen said:

What vitamins did they check? Being great for D in a Northern geographical location seems unusual in spring.  

I already supplement her with D vitamins.  We live in a pretty sunny area of Colorado but the elevation screws up absorption so we take vitamin D.

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Did they repeat a strep test?  Strep can cause lots of behavioral issues without the typical symptoms.'

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1 minute ago, Ottakee said:

Did they repeat a strep test?  Strep can cause lots of behavioral issues without the typical symptoms.'

 

 it is associated with Pans Pandas also 

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7 minutes ago, Ottakee said:

Did they repeat a strep test?  Strep can cause lots of behavioral issues without the typical symptoms.'

No, we never repeated the strep test.  She's had behavioral issues ongoing.  ADHD has been talked about for years before it became a problem.  I think the main reason it became a problem is that the workload is starting to require more concentration.  I had a feeling it might.  The huge behavior issues were a result of medication that I believe was making her angry.  She does have other anger issues and has had emotional issues before the bout with strep.  I will ask the doctor we're seeing on Monday to see if that should be repeated.  

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That's in a way maybe good news about the dairy/egg/peanut allergy, just because it's something you can do.  I know it will be a huge pain to change the way you eat (we gave up dairy and eggs several years ago and it was a major adjustment at first for sure) but wow, something concrete you can use to improve her life! (and hopefully yours too, by proxy)

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1 hour ago, moonflower said:

That's in a way maybe good news about the dairy/egg/peanut allergy, just because it's something you can do.  I know it will be a huge pain to change the way you eat (we gave up dairy and eggs several years ago and it was a major adjustment at first for sure) but wow, something concrete you can use to improve her life! (and hopefully yours too, by proxy)

I was thinking this same thing--having something as actionable as a food allergy gives you a clear path forward that could be transformational. A kid who is having an allergic response to any food that is a frequent part of their diet is going to be in a constant state of inflammation. Getting that inflammation under control is sure to have a positive impact on physical and mental health, even if it is only part of the picture.

We did allergy testing for a couple of family members recently and I was frankly disappointed to see only negative results--not because I would wish a food allergy on anyone but because It means we are back to the drawing board in trying to find the source of some ongoing health issues.

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6 hours ago, bethben said:

No test for mono since she’s 11 and it’s usually off the radar at that age I’m assuming.  She has ADHD so her sick may be another kid’s normal.

I think what you call mono is what we call glandular fever and I had it at 11.

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She doesn't eat many eggs right now and I haven't been baking too much lately - no muffins/cookies ect.  Dairy to me is easy because I had to avoid it so long and there is so much out there that are alternatives.  I have already started making a non-dairy kefir with coconut milk for her daily pro-biotic smoothy.  Peanuts is not too hard either.  Almond butter or cashew butter is not horrible.  She mostly uses peanut butter for apples and almond butter may be acceptable to her there.  The biggest issues will be when I bake cookies or muffins and our weekly family pizza thing.  The internet has made things easier with recipes.  Butter may be an issue but I don't think she would be opposed to mayo (egg free) for sandwiches or jam for plain bread.  All things to research.  I'm not too overwhelmed.  

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Yeah, no reason an 11 year old can't get mono. People associate it with kissing but it can be passed through a cough or sneeze, sharing a cup, etc. and it is often mis-diagnosed as strep. High antibodies against Epstein-Barr suggest a recent infection to me.

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Piggybacking on what others have said about food allergies...

Though reactions to individual foods may only produce visible mild (or unnoticeable) reactions, exposure to a known allergen tends to increase systemic inflammation. This sort of puts the body on alert. The thing about food allergies is that you never know what the NEXT reaction will look like until it happens - it can go from mild to wild. Did your doc say anything about an epipen? 

ETA re food allergies and specific behaviors - an acquaintance has a child allergic to red food dye. Exposure creates hyperactive, sometimes irrational, behavior. 

Edited by Seasider too
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1 hour ago, bethben said:

She doesn't eat many eggs right now and I haven't been baking too much lately - no muffins/cookies ect.  Dairy to me is easy because I had to avoid it so long and there is so much out there that are alternatives.  I have already started making a non-dairy kefir with coconut milk for her daily pro-biotic smoothy.  Peanuts is not too hard either.  Almond butter or cashew butter is not horrible.  She mostly uses peanut butter for apples and almond butter may be acceptable to her there.  The biggest issues will be when I bake cookies or muffins and our weekly family pizza thing.  The internet has made things easier with recipes.  Butter may be an issue but I don't think she would be opposed to mayo (egg free) for sandwiches or jam for plain bread.  All things to research.  I'm not too overwhelmed.  

 

I make a lot of vegan muffins (we don't eat eggs or dairy); once you get the hang of it they're quite good.  

Poor Richard's makes an excellent vegan pizza.  I don't know about cross-contamination. 

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1 hour ago, moonflower said:

 

I make a lot of vegan muffins (we don't eat eggs or dairy); once you get the hang of it they're quite good.  

Poor Richard's makes an excellent vegan pizza.  I don't know about cross-contamination. 

I agree vegan products or recipes will be your friend in this. We only have dairy allergy here, but my dairy allergic kid ends up eating a lot of vegan things, and that would cover the two most difficult of your dd’s allergies. 

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Mononucleosis is actually a term for a set of symptoms.  "Fever, fatigue, loss of appetite, sore throat and swollen lymph nodes".
Epstein Barr Virus is a common cause of these symptoms.  Yet other viruses can also be the cause.



 

 

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9 hours ago, bethben said:

She doesn't eat many eggs right now and I haven't been baking too much lately - no muffins/cookies ect.  Dairy to me is easy because I had to avoid it so long and there is so much out there that are alternatives.  I have already started making a non-dairy kefir with coconut milk for her daily pro-biotic smoothy.  Peanuts is not too hard either.  Almond butter or cashew butter is not horrible.  She mostly uses peanut butter for apples and almond butter may be acceptable to her there.  The biggest issues will be when I bake cookies or muffins and our weekly family pizza thing.  The internet has made things easier with recipes.  Butter may be an issue but I don't think she would be opposed to mayo (egg free) for sandwiches or jam for plain bread.  All things to research.  I'm not too overwhelmed.  

Earth Balance for butter.  Ener-G Egg Replacer or Bob's Red Mill Egg Replacer for baked goods.  Most pizza places you can order no cheese, and their crusts are often safe.  The internet has all their ingredients.  Best of luck!

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56 minutes ago, perkybunch said:

Earth Balance for butter.  Ener-G Egg Replacer or Bob's Red Mill Egg Replacer for baked goods.  Most pizza places you can order no cheese, and their crusts are often safe.  The internet has all their ingredients.  Best of luck!

I figured out that she is basically a vegan for baked goods now.  That is not too hard. When I was altering my diet so severely in the mid 90s, there wasn't the internet to the extent we have it today.  Also, vegan was practically unheard of.  So much easier now.  Honestly, there's not too much I have to change around here other than looking at labels a little more closely.  I don't buy a lot of pre-made items anyway.  

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I use ground flaxseed as an egg replacement in baked goods.

1 tablespoon ground flax + 1 1/2 tablespoons water = 1 egg

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So, I finally got the full evaluation time with the psychologist that took three months to get to.  I'm not sure what the report is going to say.  My guess is it will say she has ADHD and that is all.  She did a bunch of evaluation and then told me it was my turn to talk...with my daughter in the room.  I tried to explain in some vague terms how she argued with us about everything and how we constantly felt we had to watch her.  About how there were times she refused to do as we asked - to the point that her brother would leave the room/house because it was so disturbing...ALL while my dd was sitting there.  I did kindly ask dd to just wait outside the door because I wanted to discuss how both dh and I have trauma responses from when she starts her argue cycle, about how the only reason she goes to after school care is because she constantly argues with me and I couldn't handle it, and other topics I really didn't want her to hear.  Dd said, "No, I don't want to" and proceeded to argue with me about it.  The psychologist said, "well, it's normal for kids this age to argue with their parents and not want to do what they ask."   Sorry - not my kids.  I explained I didn't know what "normal" kids are because my other two neuro typical kids do sometimes argue with me or sometimes not want to obey at times, but not even close to the level dd does.  So, I apparently don't have experience with "normal" kids.  So, I'm thinking that report may not be as helpful as I wanted it to be.

Honestly, I thought the Psychologist may have been on the spectrum herself.  She couldn't look me in the eye and seemed very intent upon her notes.  When I met her, I wondered if she hadn't had time to shower in a while because she had a new baby or was sick.  She hadn't combed her hair in the pony tail.  When I was talking to her with dd in the room, I said, "I am telling you a lot of this in vague terms because dd is in the room and I don't want her to understand the true meaning...maybe I should write some of this down?", she didn't pick up on what I thought was an obvious appeal to not let dd hear everything.  Sigh.  It was so not helpful.  I was never really able to explain the intensity of what dd can be because I didn't want her to hear me talking negatively about her.  

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Do you have to continue with that psych? We had a psych like that, and the results set us back quite a bit because they were so wrong. I would walk and wouldn't even do the testing with her. Surely you can find someone else. And no, I can't believe she had your dc in the room. You should listen to your gut and FLEE. It's not like your insurance is going to pay to do this over and over just because someone is overpaid incompetent (removing not nice word).

Edited by PeterPan
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Oh, that is tough! The neuropsychologist we took our kids to had Dh and I meet with him alone first so we could discuss what our concerns were. Then on a different date we took the kids in for testing and when we got the results it was again just parents.

I have kind of wondered when reading some of your posts if you have unrealistic expectations of how compliant a child ought to be--that can certainly happen if you and your bio kids are fairly compliant people by nature. The initial post in the other thread, for example--every single thing you mention your dd doing the morning you describe is something I would have done as an ADHD child. And all the parental stress and anger would have just befuddled and upset me. I wasn't prone to hours long screaming tantrums, but things like not getting my shoes from the back door, not getting dressed when told, messing with the backpack when it was time to go--yep, I'd have done all those mostly just in a sort of oblivious cloud but the more a parent pushed for compliance the more I needed to not comply.

I'm not saying your dd doesn't have serious issues that need to be addressed, just that you may also need some guidance in parenting expectations for a kid with a very different natural temperament from your own. My husband was a generally compliant kid and it has taken many years for him to start to understand that our less compliant kids are not necessarily profoundly broken in some way. Lots of years of him saying "I was never like that as a kid!" and me responding "oh, I was, and hey look, I grew up just fine!" 

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Fwiw, when op says the behaviors are crossing the line into clinical, they probably are. There's a feel to it, a level of stress, a level of unresponsiveness and just the constant effort it takes to help someone get to where they need to be. I have no doubt it's probably happen and it's that kind of profanity level, like when people who otherwise are competent, calm, etc. would be driven to profanity and a breaking point.

And sure, of course it responds to behavioral techniques. Of course it does. But right now, without those terms they can't even get the help to bring in those people and get that behavioral help. 

I don't know, I've lived it with my ds, and when op says the level of stress from the non-compliance is high, we've btdt, sigh. It's every single thing, all day long. It's you nail it and then you take 2 hours off and there it is. I get him clicking better and he goes out with someone else and comes back non-compliant all over again. It's not just what is happening but the degree, the frequency, the unusually high level of support needed to prevent it.

After all, autism behaviors (like say this is autism) or not so freakishly different from ADHD behaviors or even things typical people do. It's the degree, the frequency, and the need for support. But like to say well ADHD kids do that, I'll bet they do. And just keep ramping up the levels till you feel like you've been endangered and wanna walk and are that stressed. 

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1 hour ago, bethben said:

So, I finally got the full evaluation time with the psychologist that took three months to get to.  I'm not sure what the report is going to say.  My guess is it will say she has ADHD and that is all.  She did a bunch of evaluation and then told me it was my turn to talk...with my daughter in the room.  I tried to explain in some vague terms how she argued with us about everything and how we constantly felt we had to watch her.  About how there were times she refused to do as we asked - to the point that her brother would leave the room/house because it was so disturbing...ALL while my dd was sitting there.  I did kindly ask dd to just wait outside the door because I wanted to discuss how both dh and I have trauma responses from when she starts her argue cycle, about how the only reason she goes to after school care is because she constantly argues with me and I couldn't handle it, and other topics I really didn't want her to hear.  Dd said, "No, I don't want to" and proceeded to argue with me about it.  The psychologist said, "well, it's normal for kids this age to argue with their parents and not want to do what they ask."   Sorry - not my kids.  I explained I didn't know what "normal" kids are because my other two neuro typical kids do sometimes argue with me or sometimes not want to obey at times, but not even close to the level dd does.  So, I apparently don't have experience with "normal" kids.  So, I'm thinking that report may not be as helpful as I wanted it to be.

Honestly, I thought the Psychologist may have been on the spectrum herself.  She couldn't look me in the eye and seemed very intent upon her notes.  When I met her, I wondered if she hadn't had time to shower in a while because she had a new baby or was sick.  She hadn't combed her hair in the pony tail.  When I was talking to her with dd in the room, I said, "I am telling you a lot of this in vague terms because dd is in the room and I don't want her to understand the true meaning...maybe I should write some of this down?", she didn't pick up on what I thought was an obvious appeal to not let dd hear everything.  Sigh.  It was so not helpful.  I was never really able to explain the intensity of what dd can be because I didn't want her to hear me talking negatively about her.  

 

Did you get a chance to give her the print out of what you wrote in thread about 8hour rages etc?

if not maybe you could email it now

a lot of what you described just seemed factual 

not particularly negative so much as a group of problems to be solved

some might be related to a diagnosis, some to things that could be changed in the approach used, some perhaps a milk or other allergy

 

as well, EBV may be responsible for some neurological issues, such as it can cause Alice in Wonderland syndrome— and if that perhaps other brain manifestations too

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9 minutes ago, PeterPan said:

Fwiw, when op says the behaviors are crossing the line into clinical, they probably are. There's a feel to it, a level of stress, a level of unresponsiveness and just the constant effort it takes to help someone get to where they need to be. I have no doubt it's probably happen and it's that kind of profanity level, like when people who otherwise are competent, calm, etc. would be driven to profanity and a breaking point.

And sure, of course it responds to behavioral techniques. Of course it does. But right now, without those terms they can't even get the help to bring in those people and get that behavioral help. 

I don't know, I've lived it with my ds, and when op says the level of stress from the non-compliance is high, we've btdt, sigh. It's every single thing, all day long. It's you nail it and then you take 2 hours off and there it is. I get him clicking better and he goes out with someone else and comes back non-compliant all over again. It's not just what is happening but the degree, the frequency, the unusually high level of support needed to prevent it.

After all, autism behaviors (like say this is autism) or not so freakishly different from ADHD behaviors or even things typical people do. It's the degree, the frequency, and the need for support. But like to say well ADHD kids do that, I'll bet they do. And just keep ramping up the levels till you feel like you've been endangered and wanna walk and are that stressed. 

 

I don't doubt there are clinically significant behaviors happening.

I'm just thinking that if a parent has a fairly narrow conception of how children can be expected to behave and then you have a child with many behaviors that fall outside those boundaries there can be a lot of tension and stress because of mis-matched expectations. If the expectations are broadened then it may be easier to figure out which behaviours really are clinical outliers and in need of intervention versus being constantly in a state of anxiety over all the behaviors. My husband, for example, would stress about a child not staying in their seat during a meal, not completing a chore after repeated reminders, not remembering to put on a clean shirt every day, forgetting to put shoes on before going to church, arguing with or "talking back to" a parent...whereas to me all those seemed like normal behaviors for children.

There are things going on with some of my kids that I have sought evaluations and interventions for, I just think it is easier to focus on major issues if I'm not stressing over or power struggling over a bunch of minor (to me) issues. 

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I think emailing the psychologist could be a good idea, you could elaborate on the things you had to be careful about saying with your dd in the room.

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Quote

I have kind of wondered when reading some of your posts if you have unrealistic expectations of how compliant a child ought to be--that can certainly happen if you and your bio kids are fairly compliant people by nature. The initial post in the other thread, for example--every single thing you mention your dd doing the morning you describe is something I would have done as an ADHD child. And all the parental stress and anger would have just befuddled and upset me. I wasn't prone to hours long screaming tantrums

 

 if the behaviors are ones the child cannot help due to ADHD (or something else), and then are met with additional punishment (or threat of punishment) right at start of every day — such as added chore  for not being dressed on time — I wonder if maybe that could ramp problems up into screaming tantrums by child and ptsd reaction to the tantrums for parents ???

a lot of what was described was antithesis to what was recommended during my foster parent training (including things like not letting dc play with a stuffed animal, which might allow the dc to self soothe)...but it could be nice if someone who has met the irl dc and family could assess the situation and help steer them toward medication, behavior therapy, expectations modifications etc that would help turn the situation around for dc and family both

 

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I've been through at least 6 psychs with my dc and I've NEVER had a psych let the kid be in the room while we were talking about him/her. They have ALWAYS scheduled that intake separately, without the kid, and made it very clear that's the type of appt it was.

If you can't communicate well with the person now, you won't communicate any better after they write the appt and you have questions. If the person has very narrow experience or understanding now, they aren't going to bring a breadth of experience to the report they write.

Neuropsychs are heavily priced and crank out reports with ZERO accountability. When they screw up, you don't get your money back or have any recourse to complain. 

You want someone you can talk with, someone who is good at answering your questions, someone who is taking your concerns SERIOUSLY. YOU are the person in the room with the most data, not them. The fact that the person is not listening and not respecting that you have that data is a sign that they are stuck in their own arrogance. Btdt. You're seeing it, sigh. 

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2 minutes ago, Pen said:

then are met with additional punishment (or threat of punishment) right at start of every day — such as added chore  for not being dressed on time

I missed it, is op doing that? 

You'd be surprised how many people use unhelpful parenting strategies, even when they have the diagnoses and know what's going on. Unless there's a team coming in and a lot of teaching going on, it's very easy to take things personally. It's easy even when you have tons of help and know, sigh.

The clinician definitely needs to be listening, not blowing the mom off and being so arrogant. Even if the mom is making mistakes or doing things that are less than helpful, reality is there's a lot of DATA there to tell the clinician what's going on. A behaviorist would listen to that and piece it together in a snap. And you probably have more than one thing. You have the EF issues, sure, but what's most concerning is the understanding of cause/effect. That's a pretty significant thing, if that piece is missing, and that's *not* so much what you expect with ADHD.

It's not a shock that someone has parenting they'll do differently with more information. The important thing is to see what data they can provide to the clinician. If the clinician isn't LISTENING, then they're basically so arrogant as to say they can see everything about the dc in two sessions of 2-3 hours (the typical length of a neuropsych eval), which is utterly preposterous.

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4 minutes ago, PeterPan said:

I've been through at least 6 psychs with my dc and I've NEVER had a psych let the kid be in the room while we were talking about him/her. They have ALWAYS scheduled that intake separately, without the kid, and made it very clear that's the type of appt it was.

If you can't communicate well with the person now, you won't communicate any better after they write the appt and you have questions. If the person has very narrow experience or understanding now, they aren't going to bring a breadth of experience to the report they write.

Neuropsychs are heavily priced and crank out reports with ZERO accountability. When they screw up, you don't get your money back or have any recourse to complain. 

You want someone you can talk with, someone who is good at answering your questions, someone who is taking your concerns SERIOUSLY. YOU are the person in the room with the most data, not them. The fact that the person is not listening and not respecting that you have that data is a sign that they are stuck in their own arrogance. Btdt. You're seeing it, sigh. 

 

I might be misunderstanding, but I thought this was already the full evaluation where the neuropsychologist tests the child, not the initial Intake with the parent.

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1 minute ago, PeterPan said:

I missed it, is op doing that? 

You'd be surprised how many people use unhelpful parenting strategies, even when they have the diagnoses and know what's going on. Unless there's a team coming in and a lot of teaching going on, it's very easy to take things personally. It's easy even when you have tons of help and know, sigh.

 

 

It was in a different thread — don’t know if I can link

 

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8 minutes ago, Pen said:

I wonder if maybe that could ramp problems up into screaming tantrums by child and ptsd reaction to the tantrums for parents ???

And yes, if the dc is stressed and the parenting and environment are making it worse, sure things are going to ramp up and get really awful. But there's more going on in the brain of that kid that gets you a situation where the kid is THAT SUSCEPTIBLE to stress that that happens. That's more your ASD presentation, seems to me, where you've got the social thinking deficits, attribution issues, sensory overload, co-regulation, anxiety, everything coming together to make a child where that can happen.

So behavioral work is the answer, sure. Lowering stress is important, yes. Helping the dc begin to see cause/effect and how their behaviors make others feel around them, sure that's good. But the fact that the parent has to bend THAT FAR and that it escalates THAT DANGEROUSLY is why there is a clinical problem.

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“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...”

 

 

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3 minutes ago, Pen said:

 

I might be misunderstanding, but I thought this was already the full evaluation where the neuropsychologist tests the child, not the initial Intake with the parent.

Good catch.

3 hours ago, bethben said:

She did a bunch of evaluation

Wow. 

And how many hours total will this psych have seen the dc when she makes her pronouncements? And did she have you fill out significant piles of mental health screening tools? I always scan with my phone any paperwork like that I give back.

Yeah, psychs are sort of half and half in my book. Some are a pretty low form of life to me, overpaid, arrogant, mcdonalds fastfood practitioners. And some are not. But some really are, and when they do that it messes up a lot. It's the parent's one chance typically, unless they want to pay out of pocket, and it can set them back years and create all kinds of problems (family, school, coverage, etc.) when the psych screws up due to presumption, not listening, going too fast, etc. etc.

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3 minutes ago, Pen said:

“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...”

 

 

Yeah, I remember part of that. Look, I've btdt so much, honestly I can't fault her. It's really easy to look from the outside, if your kid isn't that kind of kid, and go WOW SHE'S AN AWFUL PARENT. Shrug.  

Sometimes in the recesses of my mind I play around with ideas like whether kids with ASD need different parents, perfect parents, NT parents who have degrees in social work, kwim? Like we could go there. That's what the school system does when they judge us. They say wow, if that kid was with PROFESSIONALS that kid would NOT have those problems because WE, as professionals, would structure every stinkin' bit of problems out. 

 But it seems G*d doesn't plan it that way and has this sort of sense of humor about imperfection.

A parent not having the best tools and being overwhelmed, that's just sad and worthy of some compassion. Hopefully these evals will be worth something and get her some answers, sigh. 

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33 minutes ago, Pen said:

I wonder if maybe that could ramp problems up into screaming tantrums by child and ptsd reaction to the tantrums for parents ???

It took having a behavior plan written by a professional before we were able to make a game plan that could get that level of stress calmed down. And the op's dc also has significant physical issues going on, like EATING DAIRY when the dc was craving it and tested allergic. So that kid's body is SO antagonized right now, I don't think it would matter who she lived with or what demands were made or not made, she'd probably still be hard. 

That level of stress goes down by differentials, and for us it took professional help and quite a while to get there.

Edited by PeterPan

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I guess we are open to suggestions based on what behavior she’s presenting which is the reason we had her evaluated.  We have tried and tried and the evaluation was our trying to narrow down things so we could get help in a certain direction instead of what we’re doing now—trying everything.  It’s like the allergy testing.  Instead of a huge elimination diet of everything, we were able to narrow it down to three.  And now, she has those foods gone.  

I don’t know if it’s normal for a kid to threaten rages if she doesn’t get her way.  She knows the effect they have in us and uses them to be disobedient.  She has worn us out to the point where we lose hope.  Our other kids have their own issues and annoyances but at least we have a relationship outside of “hard” with them.  We don’t have that with our dd.  It’s just always hard.  Even her good times eventually turn negative.  We needed a path so we could turn it around.  I was hoping the evaluation could give us at least a path.  I don’t think it will and that’s so disappointing.

Also, we went to her pediatrician for her ADHD to find a solution.  The solution and medication we were given made her symptoms much much worse.  We went back to the pediatrician who said she was most likely developing a bi-polar condition.  There was no talk of being allergic to foods and no talk of the medication being the problem.  The medication was the big huge problem and we lived through five months of chaos and near psychiatric hospitalization before we figured that out.  We have been trying to turn this train around and have gotten not a lot of help from professional medical people.  The only good help we've gotten is from a nurse practitioner who thinks the medical community is not to be trusted.  She actually looked for allergies.  We are trying to make her life and our lives with her better and we've searched for solutions for years.    It's just hard when you try to get help and the help you get makes things worse or at the minimum not better.  

Edited by bethben
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55 minutes ago, bethben said:

I guess we are open to suggestions based on what behavior she’s presenting which is the reason we had her evaluated.  We have tried and tried and the evaluation

 

I know.  And I hope it will end up helping.  I do think that to try to communicate about these issues with the neuropsychologist before she writes the report is important 

55 minutes ago, bethben said:

was our trying to narrow down things so we could get help in a certain direction instead of what we’re doing now—trying everything.  It’s like the allergy testing.  Instead of a huge elimination diet of everything, we were able to narrow it down to three.  And now, she has those foods gone.  

 

And that may help.  FYI, a friend of my son’s was taken off gluten (not celiac) and after an initial apparent worsening from the withdrawal, hugely calmed down including much less rage

55 minutes ago, bethben said:

I don’t know if it’s normal for a kid to threaten rages if she doesn’t get her way.  She knows the effect they have in us and uses them to be disobedient.  She has worn us out to the point where we lose hope.  

 

Possibly fairly “common” even if not “normal”.

Did you read The Explosive Child yet?

 

55 minutes ago, bethben said:

 We went back to the pediatrician who said she was most likely developing a bi-polar condition.

 

Does she have a psychiatrist? 

55 minutes ago, bethben said:

 There was no talk of being allergic to foods and no talk of the medication being the problem.  The medication was the big huge problem and we lived through five months of chaos and near psychiatric hospitalization before we figured that out.  We have been trying to turn this train around and have gotten not a lot of help from professional medical people.  The only good help we've gotten is from a nurse practitioner who thinks the medical community is not to be trusted.  She actually looked for allergies.  We are trying to make her life and our lives with her better and we've searched for solutions for years.    It's just hard when you try to get help and the help you get makes things worse or at the minimum not better.  

 

Can you seek additional help from the NP?

might there be naturopaths in your area who might help?

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Could you set up a camera to film rage etc episodes so that someone (neuropsychologist, neurologist, psychiatrist etc) can see what it looks like? 

 

Also sounds like you need an excellent family therapist to help figure out how to manage

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50 minutes ago, bethben said:

I guess we are open to suggestions based on what behavior she’s presenting.  We have tried and tried and the evaluation was our trying to narrow down things so we could get help in a certain direction instead of what we’re doing now—trying everything.  It’s like the allergy testing.  Instead of a huge elimination diet of everything, we were able to narrow it down to three.  And now, she has those foods gone.  

I don’t know if it’s normal for a kid to threaten rages if she doesn’t get her way.  She knows the effect they have in us and uses them to be disobedient.  She has worn us out to the point where we lose hope.  Our other kids have their own issues and annoyances but at least we have a relationship outside of “hard” with them.  We don’t have that with our dd.  It’s just always hard.  Even her good times eventually turn negative.  We needed a path so we could turn it around.  I was hoping the evaluation could give us at least a path.  I don’t think it will and that’s so disappointing.

I am so, so sorry that this evaluation does not look like it will provide what you had hoped. I'll hold out some hope on your behalf that it might be at least a little enlightening, though your description of the psychologist's approach is not encouraging.

Your dd's rages are the one thing that stood out to me as really quite far outside the norms. I have a couple of kids prone to violent melt downs, but they don't last for hours. I'm not sure we've had one last longer than 45 minutes or so (and that sure seems long so yes I can imagine that hours long melt downs/rages would be traumatizing to the parent).

Since attachment disorder may be in play is there anyone you can reach out to who is an expert in dealing with attachment disorders?

My personal instinct, not knowing your child or exact circumstances, would be to dial way back on obedience as a desired behavior. That is my bias based on my own experience as a child who didn't respond well to demands for obedience and as a parent of some children who do not respond well to demands for obedience. I'm not gonna parent in a way that I would have responded horribly to as a child, KWIM? I really have no way of knowing if my kind of parenting would be at all workable with your child. I just know that I was a kid who was internally compelled to resist outside efforts to control me so I guess that kind of behavior from a child doesn't seem wrong and bad to me.

Leaving that aside, if there is any way for you and your husband to drop your side of the antagonistic feelings going on in your home and embrace without resentment your role in facilitating whatever growth and development is possible for your daughter I think that needs to be your goal. I know there is a lot of trauma there, very real and legitimate hurt you have experienced and continue to experience. That makes what I am suggesting really, really hard. I guess what I am seeing is three people experiencing hard, two of them adults and one a child. The greater responsibility to move beyond negative emotions and try to relate from a place of compassion not hurt has to lie with the adults. I can't promise you a mended relationship with your daughter; it is possible she isn't capable of a real and healthy relationship--that seems to be the tragic reality for some kids. I do think though that your own hearts and minds can change and heal even in the absence of significant change from her. That once again seeing with compassion must be possible.

In this I am speaking from a place of some experience. I am married to a man with serious and chronic mental health struggles. I don't have the marriage relationship I want--one where my spouse is a true partner, someone I can turn to for support as needed, someone I can trust and rely on--any more than you have the parent-child relationship you want. My marriage is pretty lopsided, with me doing a heck of a lot of unreciprocated supporting and picking up the slack and forgiving and working around his emotional instability and disability. When I look at the deficits, the hurts his illness causes me and my family, I get resentful. 

But there is a different way of looking--one in which I see his hurt, how horribly difficult it is for him to live with the nightmare reality of his illness, and the very real and even heroic efforts he has made over the years just to keep going, keep trying, to get up on yet another morning when dragging himself out of bed feels nearly impossible, to not react with rage when the world feels completely overwhelming to him. I find that when I am able to see him as a hurting human the resentment drops away, I see the trauma his behavior has inflicted on me as a secondary effect of the trauma he himself is experiencing  and I can come alongside him with whatever support I have to offer.

I've found this book helpful in navigating difficult interpersonal relationships: https://smile.amazon.com/Anatomy-Peace-Resolving-Heart-Conflict-ebook/dp/B00SGET4BS/ref=mp_s_a_1_1?crid=2TJCFMKYKR2KO&keywords=the+anatomy+of+peace&qid=1556718404&s=gateway&sprefix=the+anat&sr=8-1

I hope that somehow you are able to find some help for your daughter. I also hope you can find some healing for yourself.

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My half brother had many hour rages.  Particularly when strong willed child conflicted with strong willed adults all determined to get their own way.  They could not get babysitters 

  Head banging when toddler, Broke windows and doors etc. when older.  he has settled into reasonably normal adulthood 

I was the big sister and accidentally discovered what is basically the Explosive Child approach on my own   It worked wonderfully, and later worked well with kids I dealt with as a swim instructor and lifeguard.  

It might or might not help OP , but I think would be well worth trying.

 

49 minutes ago, maize said:

I am so, so sorry that this evaluation does not look like it will provide what you had hoped. I'll hold out some hope on your behalf that it might be at least a little enlightening, though your description of the psychologist's approach is not encouraging.

Your dd's rages are the one thing that stood out to me as really quite far outside the norms. I have a couple of kids prone to violent melt downs, but they don't last for hours. I'm not sure we've had one last longer than 45 minutes or so (and that sure seems long so yes I can imagine that hours long melt downs/rages would be traumatizing to the parent).

Since attachment disorder may be in play is there anyone you can reach out to who is an expert in dealing with attachment disorders?

My personal instinct, not knowing your child or exact circumstances, would be to dial way back on obedience as a desired behavior. That is my bias based on my own experience as a child who didn't respond well to demands for obedience and as a parent of some children who do not respond well to demands for obedience.

 

I agree with that.  

49 minutes ago, maize said:

I'm not gonna parent in a way that I would have responded horribly to as a child, KWIM? I really have no way of knowing if my kind of parenting would be at all workable with your child. I just know that I was a kid who was internally compelled to resist outside efforts to control me so I guess that kind of behavior from a child doesn't seem wrong and bad to me.

Leaving that aside, if there is any way for you and your husband to drop your side of the antagonistic feelings going on in your home and embrace without resentment your role in facilitating whatever growth and development is possible for your daughter I think that needs to be your goal. I know there is a lot of trauma there, very real and legitimate hurt you have experienced and continue to experience. That makes what I am suggesting really, really hard. I guess what I am seeing is three people experiencing hard, two of them adults and one a child. The greater responsibility to move beyond negative emotions and try to relate from a place of compassion not hurt has to lie with the adults. I can't promise you a mended relationship with your daughter; it is possible she isn't capable of a real and healthy relationship--that seems to be the tragic reality for some kids. I do think though that your own hearts and minds can change and heal even in the absence of significant change from her. That once again seeing with compassion must be possible.

In this I am speaking from a place of some experience. I am married to a man with serious and chronic mental health struggles. I don't have the marriage relationship I want--one where my spouse is a true partner, someone I can turn to for support as needed, someone I can trust and rely on--any more than you have the parent-child relationship you want. My marriage is pretty lopsided, with me doing a heck of a lot of unreciprocated supporting and picking up the slack and forgiving and working around his emotional instability and disability. When I look at the deficits, the hurts his illness causes me and my family, I get resentful. 

But there is a different way of looking--one in which I see his hurt, how horribly difficult it is for him to live with the nightmare reality of his illness, and the very real and even heroic efforts he has made over the years just to keep going, keep trying, to get up on yet another morning when dragging himself out of bed feels nearly impossible, to not react with rage when the world feels completely overwhelming to him. I find that when I am able to see him as a hurting human the resentment drops away, I see the trauma his behavior has inflicted on me as a secondary effect of the trauma he himself is experiencing  and I can come alongside him with whatever support I have to offer.

I've found this book helpful in navigating difficult interpersonal relationships: https://smile.amazon.com/Anatomy-Peace-Resolving-Heart-Conflict-ebook/dp/B00SGET4BS/ref=mp_s_a_1_1?crid=2TJCFMKYKR2KO&keywords=the+anatomy+of+peace&qid=1556718404&s=gateway&sprefix=the+anat&sr=8-1

 

I second that book suggestion too. 

49 minutes ago, maize said:

I hope that somehow you are able to find some help for your daughter. I also hope you can find some healing for yourself.

 

I hope so also.

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Also there are still more physical things that could be behind some of this sort of behavior.

Food or other intolerances  that don’t register as “allergies “ on allergy testing...

high lead levels. Or perhaps low zinc, or low magnesium levels    Arguably an absence of trace amounts of lithium 

 

...

gut biome issues...

 

and too things like ptsd that the child could have.   Of what I saw as foster parent or learned about other foster parents dealing with, it sounds a lot like ptsd issues.  Past trauma and being unable to have any control over ones life (as in orphanages or chaotic situations) leading to control issues. 

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2 minutes ago, Pen said:

Also there are still more physical things that could be behind some of this sort of behavior.

Food or other intolerances  that don’t register as “allergies “ on allergy testing...

high lead levels. Or perhaps low zinc, or low magnesium levels    Arguably an absence of trace amounts of lithium 

On the list is an allergist.  I've eliminated what I know she's having issues with and will see the allergist about possibly more or what we should be looking at further.    One thing we did find out through the psychological testing is that she has no learning issues.  She is in math a grade lower, but all I learned is she's not good in math.  It's not a learning issue.  I've told her I'm good with her being in a lower grade and she finds no issue with it.  

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15 minutes ago, bethben said:

On the list is an allergist.

 

Helpful since you know now she has allergies.  May or may not be someone able to consider anything beyond a strict allergy per se.  

This type of thing starts to approach Is This Your Child? https://www.amazon.com/dp/0688119077/ref=cm_sw_r_cp_api_i_0cCYCb7QFM9XY

15 minutes ago, bethben said:

 I've eliminated what I know she's having issues with and will see the allergist about possibly more or what we should be looking at further.    One thing we did find out through the psychological testing is that she has no learning issues.  She is in math a grade lower, but all I learned is she's not good in math.  It's not a learning issue.  I've told her I'm good with her being in a lower grade and she finds no issue with it.  

 

Learning there is no learning issue is a help.  IMO 

 

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