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Neurologist Appointment (Long)


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So we met with Anna's neurologist on Tuesday. She asked a few questions, had Anna catch a ball and hop on one foot, and then she just said medications aren't warranted at this point, and to make another appointment for 6 months from now to see how things develop.

 

I don't even know how I feel about this...Relieved, I guess? But also almost disappointed, because I wanted to feel like meds were an option. If she'd recommended them, we'd have been able to choose whether to take her recommendation. (And most probably we wouldn't have...We might have taken the script, but would have held off on filling it unless/until we felt like it was necessary.) Now that she recommends against them, it would feel completely wrong to choose meds.

 

But here's the thing, the criteria she used were that Anna's issues seem to be behavior rather than attention. (Never mind that her neuropsych eval indicated focus and distractibility issues...) It's because she's at or above grade level academically, and is progressing, albeit more slowly than she would be otherwise. She also said that meds wouldn't help with behavior (??? This isn't true, is it? I'm sure I've read that it absolutely can help with behavior.) My concern is that the neurologist isn't really an ADHD expert...She's the only neurologist in the area, and the only neurologist at all that we were able to get an appointment with sooner than 18 months when we were first looking last summer. That's the only reason we chose her. But her specialty is ASD, and now I'm wondering whether we should find a psychiatrist who specializes in ADHD instead. (I haven't found a psych that will take our insurance, though.)

 

Where things stand now: She can concentrate for around 10 minutes on non-preferred subjects...We do 10 minutes of math in the morning, and sometimes another 10 minutes in the afternoon, usually games. Preferred subjects, like reading or science labs, she can do for a half hour without being too fidgety, and she can listen to me read indefinitely, especially when she's in the right mood. We see a decent amount of hyperactivity, but it's not debilitating. The biggest issue is her behavior, when she gets upset/angry she gets REALLY upset/angry. Again not debilitating, but also hard for her. We've done a lot of work on behavior and it's gotten better, but she still has crazy times when she won't do anything she doesn't want to do. One of the biggest issues is that she hasn't been able to stay in outside activities, other than swimming (where she still has had issues following teacher directions.) I'm going to start her in gymnastics soon, and see how she does. We've tried and failed in art classes (even though she enjoys art at home), ballet, and summer camp.

 

Also, when she gets frustrated, she just shuts down, which means I can't really stretch her to do anything. We've been stuck on level 3 ER books, because if there's more than one or two words in the book she's not familiar with, she gets extremely upset, sometimes enough to throw the book. (Do meds help with frustration at all?)

 

If we do decide to put her in school (we're still on the fence about that and don't want to bring that into this discussion), I'm sure she would need meds to succeed. Anything she's tried that hasn't been one-on-one has been a disaster.

 

Anyway, I don't even know what I'm asking, I guess just whether it's worth paying out of pocket to see a psych, and whether--if this was your kid--you'd think it was worth trying meds? I'm so torn about all of this, because really I don't want her on meds, I just want things to be easier for all of us.

 

 

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I can tell you from having taught first and second grade, those attention spans are within normal for her age-particularly as she is 5 or just 6, right?

 

I can't tell you about the frustration and meds, though. Does she fall apart with teachers outside the home, too? I have ones that only fall apart with me. That would be more telling about how she'd do at school. From following your posts, I know you've done a lot of work on behavior. I am glad you are seeing some results. It may be that the doctor doesn't recommend meds b/c even the not staying in outside activities really isn't that out of the norm for her age. At 8, yes? 5/6,no. My most social child now would not participate at all in outside activities at the age. I know you have a diagnosis (so I'm not arguing that she has issues), just trying to explain why the doctor may not have thought she needed them.

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Thanks, Anne, that does make sense. Honestly, the only reason we looked for a diagnosis in the first place was her behavioral issues and hyperactivity, not the inattention. I think at one point she was bordering on ODD, although never quite that extreme. Her behaviors were becoming more and more unlike her friends, especially the frustration, how she gave up so easily, the immaturity and hyperactivity, and her emotions were so crazy intense, we began to look for answers. Her eval showed attention was a huge issue (they said moderate to severe ADHD), but really we wouldn't have ever known there was an issue if she hadn't had all the other flags, I think because she's bright enough to pick things up quickly so the lack of focus hasn't held her back academically. (Held her back from her potential, yes definitely. But she's not lagging behind her peers. I'm pretty sure though that as she gets older and curricula get more challenging, that will change.) So the only reason we'd consider meds at this point is to try to soften the behaviors and emotions, not inattention, although that may be ridiculous of us.

 

So...I guess I could reframe my question: Would you ever use stimulants JUST to address behavior and emotional issues, if attention wasn't yet much of a concern?

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Okay, does he think the medicine would be effective?  If yes, I think it is worth it.

 

Was he more saying, he doesn't think medicine wouldn't be effective?  I am not quite following on that point. 

 

Edit:  Is is more that he is saying, she doesn't have to have it this year (in his opinion), but maybe next year is the year he thinks it crosses the line (in his opinion).

 

Or, is it more that he doesn't think it will actually help?

 

That is what I think I would want to know. 

 

I think some doctors sit in their office, and they don't know about kids' lives so much.  That is some background for my attitude!

Edited by Lecka
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All she said was that since Anna's doing reasonably okay with schooling she doesn't think it's warranted at this age, the implication being that if she falls behind academically we could reconsider. I feel like part of the issue is the neurologist doesn't know enough about ADHD to realize that meds can help somewhat with behaviors. (She even said the emotional issues tell her there's more going on than just ADHD...Which is absolutely incorrect, it may not be in the DSM, but it's well-known that ADHD can affect emotional regulation.) (ETA: I mean, maybe there IS more going on, but there's a decent chance this is all ADHD-related, and she didn't even bring up the connection.)

 

So she was basically saying, Well, they'd help with attention, but she's able to pay attention well enough now to stay at grade level so there's no reason to start.

Edited by Anna's Mom
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In our experience, meds did not help with behaviors caused by frustration. Impulsive actions like running away when startled in the grocery store decreased, but fits from frustration remained exactly the same. I don't know how common it is, but that is my experience fwiw.

 

I think your doctor may hesitate because meds come with some very real side-effects, and they don't want to start kids any sooner than absolutely necessary. That doesn't make using meds right or wrong, but it may explain his point of view.

 

What does your girl hyper-focus on? Figuring out that I could use my child's ADD as a teaching tool revolutionized our home.

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Thanks, that's helpful. I'd heard it can help with impulsivity and hyperactivity, but I guess much of what I'm hoping for is just wishful thinking. We are doing Zones of Regulation (mostly unsuccessfully at this point) and a sensory diet, to help with emotional regulation, and we'll start counseling in the next couple of years. But since it won't be paid for by insurance we'll need to figure out when it will be most helpful, and at this age from what I've heard from others, CBT is only recommended to teach parenting strategies (which I think we already have a decent grip on), rather than working directly with children.

Edited by Anna's Mom
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So...I guess I could reframe my question: Would you ever use stimulants JUST to address behavior and emotional issues, if attention wasn't yet much of a concern?

Stimulants would not really address emotional issues such as a mood disorder.  I'm not sure exactly what you mean by emotional issues.  Stimulants would address impulsivity, which seems to be part of the problem.  

 

Many bright kids in early elementary with ADHD slide by just fine on their cognitive abilities and do not need medications.  Then, in later elementary school, their ADHD begins negatively impacting their school performance (as one measure) so parents opt for meds.  There are benefits to waiting until this point, and there are drawbacks.  I would not likely medicate a child who was at grade level in kindy and being homeschooled without other considerations.

 

Really, I am a fan of looking at the whole child.  Everyone has a different tipping point regarding meds.  Do keep in mind that teens are notoriously resistant to meds so adolescence is a bad time to start.  That is a long way off, but it is something to stick in your file for later.

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Yes, that was my view all along, and it's why we were adamantly against even considering meds for quite awhile. I think I was swayed by the people on this board whose kids have used meds so successfully (Storygirl, Crimson Wife, kbutton, etc.) and seemed to be pushing me to consider them when I talked about her behaviors. And even though the intense behaviors happen less frequently now, in some ways the behaviors themselves have gotten worse. (Yesterday a neighbor kid was playing outside, I told her we couldn't go out and she exploded, tried to run, and when I tried to restrain her she bit and pushed me.)

 

I don't think she has a mood disorder, just has intensified emotions (which I thought could be tamed somewhat by meds, but maybe I'm wrong.) For example, a squashed bug on the road can leave her in tears, and I can't read books or show her movies where the characters are in any sort of danger, or she just falls apart.

 

So...I guess the deal is, I don't really want to have to use meds (I mean, who does?) but I wanted to feel like if we do get pushed past that edge where we can't keep hell from breaking loose (and it feels like we're close, some days), that it would help.

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Yes, that was my view all along, and it's why we were adamantly against even considering meds for quite awhile. I think I was swayed by the people on this board whose kids have used meds so successfully (Storygirl, Crimson Wife, kbutton, etc.) and seemed to be pushing me to consider them when I talked about her behaviors. And even though the intense behaviors happen less frequently now, in some ways the behaviors themselves have gotten worse. (Yesterday a neighbor kid was playing outside, I told her we couldn't go out and she exploded, tried to run, and when I tried to restrain her she bit and pushed me.)

 

I don't think she has a mood disorder, just has intensified emotions (which I thought could be tamed somewhat by meds, but maybe I'm wrong.) For example, a squashed bug on the road can leave her in tears, and I can't read books or show her movies where the characters are in any sort of danger, or she just falls apart.

 

So...I guess the deal is, I don't really want to have to use meds (I mean, who does?) but I wanted to feel like if we do get pushed past that edge where we can't keep hell from breaking loose (and it feels like we're close, some days), that it would help.

Re: the bolded, I do not recall your entire history here, but I seem to recall she is adopted.  The bolded is more than ADHD.  Do you have another diagnosis?  Was there prenatal alcohol or drug exposure?  I do not think that stimulants would impact the bolded.

Edited by texasmama
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Did you say you saw a neurologist?  If the brain structures are in tact and if no lesions, seizures, tumors, or obvious physical brain issues are present, wouldn't you see a qualified child psych for the meds or a PhD Neuropsych for NEPSY II and other educational and ADHD assessments?

 

I don't understand.

Edited by Heathermomster
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Re: the bolded, I do not recall your entire history here, but I seem to recall she is adopted.  The bolded is more than ADHD.  Do you have another diagnosis?  Was there prenatal alcohol or drug exposure?  I do not think that stimulants would impact the bolded.

 

Yes, her birth mother used both drugs and alcohol. But I've read on boards/groups with other parents of ADHD kids that this type of behavior isn't uncommon for ADHD, it seems like many (although maybe not most) have issues this bad or worse. That's not to say this isn't a result of something else, but it might just be the ADHD...Note that this behavior doesn't happen that often, she actually hasn't lashed out at me to that extent for several months (although I don't know that I've ever had to restrain her like I did yesterday.)

 

 

Did you say you saw a neurologist?  If the brain structures are in tact and if no lesions, seizures, tumors, or obvious physical brain issues are present, wouldn't you see a qualified child psych for the meds or a PhD Neuropsych for NEPSY II and other educational and ADHD assessments?

 

I don't understand.

 

Sorry, it's a pediatric neuropsych. (She hasn't had brain imaging.)

Edited by Anna's Mom
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Yes, her birth mother used both drugs and alcohol. But I've read on boards/groups with other parents of ADHD kids that this type of behavior isn't uncommon for ADHD, it seems like many (although maybe not most) have issues this bad or worse. That's not to say this isn't a result of something else, but it might just be the ADHD...Note that this behavior doesn't happen that often, she actually hasn't lashed out at me to that extent for several months (although I don't know that I've ever had to restrain her like I did yesterday.)

It is not 100% possible to know the cause and exact issue you are dealing with at this point, probably, but given the known history of prenatal drug and alcohol exposure, the most likely explanation for her struggles is FAE.  It is at least up for consideration in such a case.

 

People posting on sites are going to have the worst case scenarios because they are looking for help and support, usually.  They also may have something else going on besides ADHD and be unaware of it.

 

I cannot say that for certain your dd is dealing with something beyond ADHD, but I would strongly suspect it given the prenatal history.  There may be mental health history of which you are unaware, as well.  It is possible that your dd has severe ADHD and nothing else, but it is also at least possible (and may be likely) that your dd is affected neurologically by prenatal drug and alcohol exposure or be genetic mental illness.

 

I frequently say this on the boards, but when I child is so young it can be really hard to tease out what the specific issues are.  Closer to 10-11 and older, the developmental milestones slow down, and the diagnosis becomes more clear.

 

I don't mean to sound so negative.  Your love for your dd shines through in every post.  I just wanted to speak from my professional and personal experience.  I have no doubt that you will pursue every avenue of help and support for your dd and the results will be that she will achieve her best possible outcome.

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Just wanted to pop back in and encourage you to reconsider counseling. Yes, they are parent focused at this age, but the techniques you will be taught go above and beyond "normal" parenting.

 

If nothing else, it is good to have a place where it is safe to say that your kid's behavior is pushing to the breaking point without the risk of judgment or well-intentioned bad advice.

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Just wanted to pop back in and encourage you to reconsider counseling. Yes, they are parent focused at this age, but the techniques you will be taught go above and beyond "normal" parenting.

 

If nothing else, it is good to have a place where it is safe to say that your kid's behavior is pushing to the breaking point without the risk of judgment or well-intentioned bad advice.

I agree. I think that even folks who have strong parenting skills and good boundaries can develop blind spots with their own kids. Also, with special needs, it can be hard to tease out when a child is behaving purely as a result of frustration with regard to the special need and when it is just normal willfullness that might need stronger boundaries. I am definitely guilty of this and I thought after growing up with a Mom who struggled with this with my brother, seeing it in parents of children I taught and having exprience teaching special needs kids, that I would have no problems. It's normal and a counselor can help you talk it through and come up with strategies and point out blind spots.
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I just wanted to add that it could be helpful to look into a possible FAE diagnosis while she is still young.  If you wait until she is older, the necessary measurements (facial, etc.) are much more difficult to do.  Kids with that diagnosis are often able to qualify for various programs with a diagnosis ( an example is a program in our state allows them to be in a therapeutic horseback riding  program for either free or greatly reduced costs). I know there are specific doctors who do this type of diagnosis.

 

NOFAS.org is a good resource

Edited by Princess Ariel
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I just wanted to add that it could be helpful to look into a possible FAE diagnosis while she is still young.  If you wait until she is older, the necessary measurements (facial, etc.) are much more difficult to do.  Kids with that diagnosis are often able to qualify for various programs with a diagnosis ( an example is a program in our state allows them to be in a therapeutic horseback riding  program for either free or greatly reduced costs). I know there are specific doctors who do this type of diagnosis.

 

NOFAS.org is a good resource

Yes.  It is not an easy diagnosis to make, and there is a window of time during childhood when it is easiest to make.  Even without the physical markers like the facial measurements, she can still be neurologically affected.  And yes, it would open up services.

 

Full disclosure here:  I have an ASD kid for whom I was very resistant to accepting an ASD diagnosis.  Had I done so and gotten him on a waiting list when he was three rather than 14, he would have qualified for services which might be helpful.  I accept the diagnosis now, but it is too late to qualify for some services, as the waiting list is a decade long.  He received extensive ST, OT, and PT, and I've homeschooled him for eight years, providing all sorts of supports in his life for him to be successful.  I am so proud of him, and he is doing well currently, but he went through a rough patch (the roughest ever) this past summer, and all I could do is call to get him on a waiting list for an evaluation for services.  Thankfully, things slowed down, but I was worried.  We do not have health insurance benefits. I did the best I could with the information I had and accepted at the time, but looking back, I wish I had done that one thing different.  He still got services through the school district (GOOD services) without the ASD dx, but having it with other agencies would have opened the door for some things now it is too late for.

 

A valid use of therapy for a parent with a difficult child is venting and getting support.  I've been on the giving and receiving end of this in therapy.  The general public does not understand what it is to parent these kids.  An experience therapist can offer you things that you can't get elsewhere.  Not everything but some valuable things.

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I think I would also screen for counselors who have some idea what RAD is since adoption is in the equation. At least someone who won't dismiss the possibility ("Oh, that's rare, she couldn't have a problem with that") and who would be able to point you to what you need if that becomes a feasible thing to explore. But anyone SN friendly to start is a great idea.

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If it's not ADHD, I do think alcohol and drug exposure do a lot better job of explaining what she goes through than RAD, because she seems very attached (but not overly attached) and her behaviors don't happen every day. She can also usually be calmed down.

 

I've spent the past couple of hours looking up articles on FAE, and yes, it's possible that's what's going on. She doesn't have any learning disabilities or FASD facial features, but matches all the behaviors. (ADHD is one of the associated issues.) FASD can actually cause RAD...

 

I've also spent the past couple of hours crying. I thought I'd gotten over the pain and anger at what had been done to her in her most vulnerable months, but it's all coming back up again. She's really such a sweet, beautiful little girl, and thinking of what this might mean for her is so impossible to stomach.

 

So who would you recommend? A psychiatrist or psychologist? Who specializes in ADHD and all variations of mood disorders? I'm feeling so overwhelmed right now, I don't even know what to look for.

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:grouphug:   A friend with an adopted dd whose birth mother drank significantly during pg was referred to a geneticist to evaluate for FAS or FAE.  I have an adopted niece with FAE/RAD.

 

In your shoes, I would start with doing research about large childrens' hospitals in the area.  They may have a specialty department that can help you find answers.

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:grouphug:  :grouphug:  :grouphug:

 

You might have to "date" a couple of counselors to find the right ones, If you have any adoption support groups around, they could probably point you to both FASD and RAD-friendly counselors. I think it's important to find someone to support you. If you find that without someone knowing anything about FASD and RAD, that's okay. I just don't want someone to be snippy with your about parenting if they don't really understand (I had that happen to me before my son was diagnosed with ASD--it kept me from looking for another counselor for a very long time).

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Would you ever use stimulants JUST to address behavior and emotional issues, if attention wasn't yet much of a concern?

 

I would consider medication as a last resort for a child of that age, if extensive (6 months +) therapy had already been tried AND the risk was of self- or other-harm that would cause permanent damage, and even then, I'd much rather turn to pediatric anti-depressants / mood regulators than stimulants.

 

I have two girls. One is extremely emotional and will bang limbs, head, etc. against the wall, have meltdowns (though these stopped around six), etc. There was no drug exposure in utero but a lot of family stress. They are both very inattentive, to the point that teachers comment on various distractibility issues. The pushing and biting incident could have happened in our home--biting was not an issue but hitting and kicking and throwing things was. She cannot stop when asked to stop, or even when pulled away from someone.

 

Their behavior in school is inattentive but otherwise satisfactory and they are making great progress academically.

 

I don't know what your daughter is facing specifically but I understand the frustration of needing the outbursts and anger and everything to JUST STOP.

 

Neither of my children were exposed to drugs and alcohol in the womb.

 

I still would not use stimulants to control behavior, not at that age.

 

I hope you find something that works for your family.

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For example, a squashed bug on the road can leave her in tears, and I can't read books or show her movies where the characters are in any sort of danger, or she just falls apart.

 

I have two girls like that. I think it is well within the range of normal at that age. I know it's hard to live with--just this year we were able to watch anything other than PBS kids without my daughter (at nine!) running away crying. But there is nothing wrong with that. Squashed bugs and characters in danger are sad.

 

I completely understand your concern about your daughter's outbursts that could hurt herself and others, and the difficulty educating her, but I would urge you to look at her sensitivity from a different perspective. That sensitivity can be a wonderful gift if nurtured and unlike inattentiveness or self-regulation issues, usually doesn't have the same major downsides.

 

Does your daughter like music?

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Did you say you saw a neurologist? If the brain structures are in tact and if no lesions, seizures, tumors, or obvious physical brain issues are present, wouldn't you see a qualified child psych for the meds or a PhD Neuropsych for NEPSY II and other educational and ADHD assessments?

 

I don't understand.

Our ADHD label was given by pediatric neurologist (MD) as well. In our local children's specialized hospital, they are also called developmental pediatrician. Therefore, when I made appointment for sorting out inattention issue for DS, that's where they pointed us. They use DSM form, interview with both parents and child, neurological tests(motor skills etc), and simple achievement test to give out diagnosis. DS current teacher has ADHD child as well and he also sees pediatric neurologist for treatment including medication and OT referral. As far as I know in my local area, only MD can prescribe medication. Therefore, you will need to go to pediatrician, psychiatrist or neurologist if you consider medication as option.

DS also has emotional regulation issue and he has minor ADHD PI label. He is not aggressive (no hitting or pushing type of behavior) but easily triggered for emotional outburst. School psycholoist observed him in school setting and she recommended us to do psychiatric evaluation to sort of anxiety and depression possibility.

School psychologist is trying reward system with DS this week. We also started Zones at home last week. He has been holding up his emotion very well so far (no outburst) but become very disorganized and forgetful than usual.

Edited by beishan
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Sorry, on my phone and cannot access as I'd like. But I think diagnosing FAE does require some special training and you will have to do some digging. I know sometimes there is a psychologist working with counties or also within major universities. The psych who completed my DC's  most recent evals just happened to have that qualification. She had worked with the county, then in a large pediatric office of an HMO and now is in private practice. My DS didn't get his ARND diagnosis until he was 13! It is on the FAE spectrum but may have been different had he been evaluated for it at a much younger age.And he may have gotten services, too.
Also has ADHD diagnosis.

 

Don't write off any adoption related issues. Everything isn't full blown RAD. There is a wide range of issues adopted kids can experience. No matter when they are adopted, they have been separated from their primary caregiver and that can profoundly affect them. There is much hope if you know what to look for. Google Stacy Manning. We have worked with her and found her ideas to make so much sense (she didn't do the research but introduced us to it) in relation to our adopted kids and what they struggle with.She's a great source of support. Wish we'd known so much sooner! Good luck

Edited by Princess Ariel
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I am a little hesitant to chime in here but I have a little experience in this realm.

 

I have 2 adopted younger ones who were both drug exposed in utero , one the bm drank like a fish also entire pregnancy. We never did FASD testing . we had too much else to get in front of at the time.

 

We also adopted a 13 y.o. boy from a group home where we volunteered that was labeled with lots including ' unadoptable' ( had 3 previous failed adoptions) . at age 18 he bolted and went back to his birth family. We don't have contact excpet on rare occasion. No visits. His bio brothers had RAD , one esp bad and was finally dropped off at a him that could deal with him ( by his adoptive family. Not us)

I spent time with this family on visits to let the bio brothers spend time together as well as his younger siblings who 2 were RAD cases.

Many of the kids at the group home had RAD also. IMO. This does not sound like RAD tho I am not a professional. Just a mom whose seen alot. The RAD kkds I've seen don't connect with their moms at all. No emotional attachment . and behavior much more disruptive to say the least....with that said...

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I have read the board for a couple years. I have read all the posts and replies searching for info to help my 2 lil guys adopted from birth who were born addicted.

 

It definitely sounds like ADHD and probably more, dyslexic etc.

 

We were very hesitant to go the meds route . we eventually HAD to. I am telling you. Our lil ones have similar issues and the ...not ritilan but vyvanse route makes him night and day different. I or he cannot control him without the meds. He takes intunive for evening to help with anxiety and the come down from the vyvanse. As our pediatrician explained it. It's a different class of stimulant without all the horrible side effects of the ritilan type route.

My 11 y.o. cannot control ...anything really without it Nd thst doesn't even start to address the inattentiveness.

 

So from a parent in a similar situation who is/was also not a fan of stimulants I can tell you. His life has greatly improved. He's actually ...a happy kid now.

IMO. It won't hurt to ask about the vyvanse and to try it. You can always take them off of it if you don't like it . :)

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Sorry for another comment. My phone systems are shutting down ( too many pics lol)

 

We have a now 23 y.o. who was diagnosed ADHD and severely dyslexic.....later with bi polar disorder and anxiety.

As a mom, I saw all this in her as a child. My husband refused meds and she didn't want them either. Now, after having gone through many troubles ..MANY...as a late teen and early adult. She finally came to me and asked to go to the doc. She realizes she couldn't function normally and independly without them , and...make food decisions. She and we deeply regret not going the meds route. Would have saved her alot of trouble as a young adult.

We took her to a pshyciatrist, she didn't like him so we have another appointment next week with a different one. She is on meds now ( from first pshyciatrist) and doing night and day better.

 

I just don want to see any child and parent go through what she and we have been through esp when you get into the adult realm and you can't MAKE them get and take meds anymore. Has been a very long road that didn't need to be that way.

 

Trying a good different class of med isn't going to hurt anyone and will likely greatly improve the quality of both your lives. :)

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