ADD/ADHD testing (cross post from Chat Board)

[oneangelwaiting]

I originally posted this on the Chat Board but someone suggested I try here.

 

I have suspected for quite some time that my 7 yo DS (he'll be 8 in March) has some form of attention deficit disorder. We homeschool so I felt like that would give him some room to mature if it was just lack of maturity, and give him some grace to have extra play time etc. 

 

My husband is getting pretty fed up and would like to get him tested and possibly start medication, assuming of course that he does actually have this. 

 

Throwing a wrench in this whole thing is the fact that I do not really care for our doctor, and have been considering getting a new one.  She seems to be somewhat anti homeschooling, and also anti breastfeeding past a certain age (I'm still nursing 15 month old DD and she has been saying that she should be switched to cow's milk for months now).  These things are among other issues that have come up. I love her on the one hand, but dislike her on the other.  I assume the process would need to start with her, but if I get a new doctor and then say right off the bat hey, can you test my kid for ADD I feel like that would look bad.  Maybe I shouldn't be worried about this, I don't know.

 

Anyway. I thought maybe I'd talk things over a bit here and see if anyone has any thoughts. I've never done anything like this before, and I always second guess myself and think "Well maybe it's not as bad as I've made it out to be, maybe it's normal for his age" etc.

 

Looking at the different symptoms of things online he:

 

* Doesn't pay attention to detail or makes careless mistakes (especially with chores and copy work, skipping over lines, finishing only half of a word before moving on to the next word, etc.).  I do feel this is somewhat "normal" for his age.

 

* Doesn't stay on task (especially if it is something that takes more than 5-10 minutes, he will just stop and stare into space, fiddle with pencil, etc. He can sit there for 30 minutes or more doing literally nothing).

 

* Doesn't appear to be listening (won't look you in the eye when you're talking to him, constantly in motion)

 

* Doesn't follow instructions (for example, in a 3 step process he will complete 2 things and not do the other part, such as take sheets off bed, put clean sheets on bed, bring dirty sheets to laundry room he will forget to bring his sheets down to the laundry room. Or at night getting ready for bed he will put his pajamas on but forget to brush his teeth and go to the bathroom, getting distracted by the other kids, or by toys, or by just staring at the wall.) These are things he does weekly/daily, and he still needs constant reminders to make sure that every step is completed.

 

* Avoids or dislikes doing things that take effort or concentration (again, if they last longer than a few minutes, he'll just quit and move on to something else)

 

* Loses things - YES

 

* Forgetful and easily distracted - YES. Sometimes he literally has no idea what he was doing (for example, he was buttering his bread and started playing with the knife in the butter, and I asked him why he was doing that and he had no idea he was even doing it. Half the time he is in la la land and he either has no idea what he is/was doing or else he is a very good liar. I don't think he's lying though, he simply somehow can not remember what he was doing 5 minutes ago).

 

 

As far as the hyperactivity piece, the only things I really see are constant talking (including interrupting others, not taking turns in speaking with others) and being in constant motion.  It's hard for me to know if this is just manners/maturity that needs work or if it is a problem.  The other things listed I don't think are as applicable.  The interruption and constant talking has gotten a little bit better the past few months, we've been talking to him about it a lot so maybe that is helping?

 

 

The biggest problems, to me, are his ability to be distracted by anything and everything and the times when he can't remember what he has been doing.  His tasks take him such a long time to do, it's frustrating for him as well as the rest of us who might be waiting on him. He is the one who takes the longest to get dressed, to get shoes and coat on, to do just about anything and everything because he moves soooo sloooowly and is distracted by every single thing he sees. DD5 and DS6 can do the exact same things that he does in half the time, with no adult assistance or reminders.

 

 

I have really mixed feelings about this.  As I've said, we've suspected for a while.  His younger brother (age 6) seems so much more responsible and reliable and I feel like as DS6 has matured it has kind of highlighted DS7's issues. And I say that with love, I try very hard not to compare them. DS7 has a lot of strengths, including being a natural leader, very very creative, he has wonderful number sense and has amazed me with the things he's learning in math (even things that I didn't teach him), and his language skills are off the chart.  He's amazing at art also, he's always thinking of crazy stuff to make.  He's clearly very bright, and I don't think I'm biased about that.  A few additional thoughts - he's fantastic at memorization when it is read aloud to him.  He reads pretty well though makes kind of weird mistakes sometimes.  I don't want to make it sound like his school work is horrible because it's really not, he is a great student when he can focus on what he is doing.

 

So, any thoughts on the new doctor or trying to pursue this with our current one, any feedback on any of the symptoms, etc.? Anybody BTDT?  I feel a tremendous amount of guilt about this and I do not know why. 

 

Sorry this is so long, you get a gold star if you've finished!  :)

[Recovering Sociopath]

If you don't like your doctor, definitely get a new one. The anti BF thing would have me running (I'm nursing a 15mo, too! high five).

I don't think it would look bad to ask for testing right away with a new doc. You can flat out say, "I didn't have great rapport with our last doc, so we wanted to find someone we were comfortable with before we take this big step." That is a perfectly rational thing to do.

I am in a similar boat with 9yo DS, in that for years I've written things off as "just his personality," but I've finally realized some testing may be in order. I asked our pediatrician about testing, and she actually referred us to the school district. Where we live, in PA, the SD is required to make comprehensive special ed evaluations available to everyone, even home schoolers. Our pedi said that once we get an evaluation from the SD we can move on from there in terms of determining what, if any, meds or therapies are appropriate.

Good luck!

[Heathermomster]

There are women here that can speak with much more experience than I can.  DS was evaluated and diagnosed ADHD inattentive by a PhD Neuropsychologist during a full ed evaluation which included a NEPSY II, and he is currently under the care of an eminently qualified child psychologist.  The reg ped is no where in that loop.

 

The child psych told me that she does not prescribe meds automatically and often sends her patients to an OT that can evaluate for developmental motor issues.  OP, in your case maybe seek a one hour OT evaluation that looks at developmental motor, motor planning, visual perception, and static/dynamic balance.  If any issues are present, the OT will work out an OT plan and then seek the guidance of a child psych afterwards,

 

It is fairly common for parents with kiddos who suspect their child is either hyper or combined type ADHD to monitor diet, look for food allergies, and use omega supplements.  

[PeterPan]

I'm bringing this over from your other thread.  Welcome to LC!   :)

 

There are several good reasons to get a full psych eval.  One, a pediatrician could misdiagnose because he's not qualified to contrast it with other things.  Two, you're not getting the detailed test information that would affect how you teach and work with him.  And three, you're not getting the extra referrals a psych could catch.

 

You might need to go through your ped to get the referral.  As far as who you want, get word on the street.  There are a variety of kinds of psychs (neuropsych, ed psych, clinical psych).  What varies is the amount of time they spend and the detail of the testing.  I will say, of your list, the thing that makes my ears and eyebrows perk up is the eye contact thing.  It would be good to make sure you're getting *complete* explanations.  And while you're at it, just my little suggestion, go ahead and get a proper hearing eval (if you can get one inexpensively), a vision exam with a developmental optometrist (find through COVD, just get the regular annual exam and ask them to screen for the developmental stuff), and consider an OT eval.  Around here, I can get that audiology at the university for $35, the vision for $65, and the OT for $80.  On the OT (occupational therapy), you're wanting someone who looks for retained primitive reflexes and sensory as well as the more run of the mill fine motor and motor planning.  Fwiw, you can also have that OT eval through the ps.  Technically you can get your psych eval through the ps also. You would make a formal written request and they are required by federal law to do it.  

 

That list might look long, but it would be less than $200 if you use the ps for part of the list, and it would give you complete information.  A full neuropsych eval is $2K+ in our area.  It's what I did with both my kids, but you can get good information combining sources too.  It just depends on what your options are and who's paying. LOTS of kids with ADHD have OT issues going on, and it's good to have that information while you're making your choice about meds.  Meds can be an important part of the mix, but it's good to actually treat the things we can treat that are going on, kwim?  

 

 

Edited December 23, 2015 by OhElizabeth

[PeterPan]

On the eye contact thing, *can* he?  How frequent is this?  Is there eye contact in pictures?  Does he have any refusals or quirks?  

 

The ADHD level of no eye contact is more like I'm faded out for a minute and staring off into space or it can be looking away to think.  But once you get to limited eye contact ever, there can be more explanations for that.  You'd also mentioned a subjective sense of him just being slower to develop or younger or not keeping up (my loose paraphrase).  These are significant, and they're good reasons *not* to assume that it's *only* ADHD or that it even is.  There can be fuller explanations, and the ped can misdiagnose because he doesn't have the ability to consider ALL those options.

 

The audiology would be to screen for CAPD.  Like I said, our university will do it as part of a whole exam for $35 if you just ask.  Auditory processing issues are *so* common in ADHD, it's one of those good things to check.  I finally took my dd, after YEARS of her complaining and us wondering.  She's not diagnosable, but she is RIGHT ON the line.  So for her, we now know which is, what aspects, and she can use compensating techniques.  It was good information.  Some kids are a bit farther and will be diagnosed.  It's just another thing you can make sure gets considered.

Edited December 23, 2015 by OhElizabeth

[Storygirl]

You may want to look for a different pediatrician, but you can get an ADHD diagnosis from someone else. DS11 has been diagnosed by just about everyone! Here is a little chronology for him:

 

1) Pediatrician. When DS was younger, the ped said he "didn't see it" because DS11 didn't seem hyper during his office visits. He didn't suggest screening, and we didn't ask (we didn't even know what to ask for at that point). We were homeschooling and didn't push it but just dealt with it at home as best we could until DS11 was age 9. Looking back, we put up with things for a lot longer than we should have. DS11's behavior was affecting relationships at home and our ability to accomplish schoolwork, so even though we thought we didn't NEED meds while homeschooling, things were challenging without them.

 

Then things began to come to a head in our family, and we started looking for help.

 

2) Child psychologist. DS11 began seeing her for anxiety at age 9. As part of the intake, she had us do the Connors screening, and DS11 scored in the severe range for ADHD. She talked to me a lot about the pros and cons of an official diagnosis and using meds. She was extremely helpful and gave us coping and calming techniques to use (though she could not prescribe meds). She knew we were hestitant to use meds and were homeschooling, so she called the ADHD a "rule-out" not an official diagnosis. She said she was willing to change it to an official ADHD diagnosis whenever we were ready to accept it.

 

3) Child psychiatrist. We received the name of a highly regarded psychiatrist who was good at managing ADHD meds and made an appointment. The psych also diagnosed ADHD and gave us a prescription for meds.

 

4) Back to the pediatrician. Before filling the prescription, we went back to talk to our pediatrician. He wanted to do his own screenings now and be involved in figuring out the meds. He ran a computer test called the Quotient and found DS to be in the severe range of ADHD. We started DS11 on meds and had to go through several kinds and dosages before finding what works best. Although we could have gone to the psychiatrist for this, we decided to work with our pediatrician, because we had a very long-standing relationship with him. Even though he missed the ADHD the first time, we trusted him to manage the meds, and it was a good decision because our ped knew a lot about med options and using mindfulness as a dual-pronged approach. Some peds do not want to manage meds and prefer to refer to psychiatrist.

 

5) Neuropsych evaluation. We wanted a full evaluation, though the pediatrician didn't think it would be worth the money. We are glad we did it, because it turned up A LOT more than the ADHD. NP acknowledged the ADHD that had already been diagnosed, though meds were working well enough by now (only a few months after starting) that they did not see the hyper behavior.

 

6) Public school. Just this fall we had DS11 evaluated by the school for an IEP (he is enrolled for the first time). The school psych ran the Connors and confirmed the diagnosis. (But the meds help DS so much during classtime that the teacher's scores for the Connors did not show all the behaviors that the parent scores did. Which shows how powerful the meds are for him).

 

7) We are now pursuing even more evaluations, this time for possible autism, through a special clinic. I'm sure they will also do some ADHD screening, because it will be a multi-factored evaluation, unless they just accept the previous diagnosis.

 

So you could get a diagnosis of ADHD through any of these paths. DS11 has been diagnosed by all of these people. You may need referrals for insurance purposes, but if you don't, you don't need to go to your pediatrician first.

 

 

Edited December 23, 2015 by Storygirl

[Storygirl]

Oh, I should add that DS11 was also seeing an OT. She was open about believing that many kids with a diagnosis of ADHD are over diagnosed and over medicated. She thought a lot of them actually had sensory processing disorder instead (the symptoms can cross over). By this time DS was already medicated, and it was working for him, so I let her comments go in one ear and out the other. She periodically would want to talk to me about his meds and side effects and her desire to see him go off the meds.

 

I just wanted to mention this, in case you decide to pursue an OT diagnosis and find someone with a similar agenda. You do have to be willing to sort through what people say to use what is helpful for you and throw out the comments and opinions that are not applicable to your child.

 

ADHD and SPD definitely can look alike, so getting screened for sensory is not a bad idea. DS11 has both ADHD and SPD.

 

Getting screened for hearing is important, too. My other son was having problems following directions and attending. He was just diagnosed with hearing loss and will be getting hearing aids. You don't know until you do the testing. And the little hearing test in the pediatrican's office is not good enough. DS10 could pass those.

 

 

Edited December 23, 2015 by Storygirl

[Targhee]

I only bring this up because it jumped out at me.

" Doesn't follow instructions (for example, in a 3 step process he will complete 2 things and not do the other part, such as take sheets off bed, put clean sheets on bed, bring dirty sheets to laundry room he will forget to bring his sheets down to the laundry room. Or at night getting ready for bed he will put his pajamas on but forget to brush his teeth and go to the bathroom, getting distracted by the other kids, or by toys, or by just staring at the wall.) These are things he does weekly/daily, and he still needs constant reminders to make sure that every step is completed."

 

I think it is very impressive that a 7 yr old can take off his sheets and put on new sheets without a reminder! Of my 3 with ADHD, only the 13 year old (on medication) can do this and remember to take them to the laundry room across the hall. My 10 year old needs a reminder for every step, and my 8 year old can probably get two steps done on her meds but without she has trouble even starting if I leave the room. And yes, changing sheets is part of the weekly routine.

 

I am not saying ADHD is not a possibility in your child. This just stood out as I read your post as not very ADHD like. Many of the others (sitting at the table and staring off into space) sound like ADHD inattentive. But Adhd symptoms can be caused by many things, including CAPD and SPD, and ASD, as well as learning disabilities and even seizure disorders.

 

When you do seek evaluations I would have an open mind that it could be a number of things. Most healthcare providers are more responsive when you come to them with a "chief complaint" (eg my child is having real struggles with focus which are making school work, home work, and relationships difficult - followed by examples) vs a suspected diagnosis. I think if you talked to your new provider with this approach you would get more traction. We, after talking with developmental pediatrician, got traction with a developmental psychiatrist and paid out of pocket for a full psycho-Ed eval.

[kbutton]

I think what you are seeing is highly suggestive for ADHD. Our ped diagnoses with the Vanderbilt survey and discussion with parents. We have an NP diagnosis for my son who strongly overlaps with very similar symptoms. But, we also have a CAPD diagnosis which can overlap with some of the inattentive symptoms of ADHD as well. We are not ready to move on the ADHD front because too many other things have come to light. A trial of hearing aids for CAPD gave us amazing improvements with the symptoms, but it didn't totally fix things. We also found that he has a lot of retained primitive reflexes, and some of them cause a child to feel as though they have to move all the time. I am curious to see how my son's behavior changes once he has more work on his CAPD symptoms (including training in listening to and following multi-step directions) and his retained reflexes (we are working on those with vision therapy). Behaviorally, it's a big adjustment to make if he makes progress in those areas--old habits of not listening die hard.

 

For the handwriting and other motor-related tasks, that can be vision/retained reflexes. Some of the reflexes my son has retained cause the eye and hand to stay together, not work independently, so with copywork, he is constantly losing his place and having to find it again. To write what I ask him to write, then he has to listen really well, which is clearly not a strength with CAPD. On top of that, he has significant motor issues and motor planning issues. It's a mess.

 

I do think he may have ADHD, but at this point, the water is too muddy to make a serious decision about meds or not. 

 

I would get  COVD checkup that includes ocular motor skills, a hearing/CAPD screening (they will give you a little trouble about being 7, not 8 sometimes), and find out if you can get his reflexes checked by someone that does significant amounts of reflex work (the specialist with vary by location--around here, the vision therapist is the only person to dig into reflexes so far). My son is currently receiving vision therapy. My older son did VT as well--he had dramatic and rapid improvements not only with vision, but with motor skills and coordination. 

[Mrs. Tharp]

Without reading the pps.

 

Life is short. Find another doctor. You should have someone giving you advice who is on the same page. 

 

You are right to be concerned about your son. My son with ADHD showed many similar symptoms. While I had my suspicions when he was younger, the issues really crystallized when he was seven. Medication enables him to focus enough to get his work done with a "normal" amount of prompting from me. I also make his day very structured. 

 

If/when you have him formally evaluated, I strongly suggest asking around for a few months before selecting an evaluator. Don't be afraid to ask around your local autism community. ASD and ADHD kids can share common deficits in executive functioning and someone who specializes in Autism has likely seen a good bit of ADHD as well. 

 

Don't feel guilty!!!!!!  :grouphug:

 

 

[Davysmom]

I did talk to my ped about my 7 yo ds's possible ADHD. And I did need a referral to be seen by the office I choose. (ins did not require it. The Dr did.)

 

But I wound up not really needing to. I choose an office recommended by a school counselor. I asked around a lot. I spent more than 6 months looking for someone. I did not go with the ped recommended offices. And the nurse have a referral without checking with the Dr we saw. So I didn't really need anything from the ped.

 

We opted for a full nueropsych evaluation.

It was expensive! But it was good.

 

We get the results next week.

[Mom28GreatKids]

Kbutton- can you elaborate on the primitive reflex issues your son has? What do you mean, how do they present? Etc. My son's OT keeps talking about a specific reflex my son (3) resists and I am having a hard time understanding the significance. Thanks.

[Heathermomster]

Kbutton- can you elaborate on the primitive reflex issues your son has? What do you mean, how do they present? Etc. My son's OT keeps talking about a specific reflex my son (3) resists and I am having a hard time understanding the significance. Thanks.

http://forums.welltrainedmind.com/topic/559283-primitive-reflexes/?hl=%2Bprimitive+%2Breflex&do=findComment&comment=6503343

[brynndolyn]

Thank you all so very much. I found a place that does all kinds of assessments including mental health, learning disabilities, etc. so I gave them a call to get the ball rolling on that.  There is an interview before any testing starts so that they can decide what tests would be most beneficial and I will be sure to mention the CAPD.  They are booked out at least a month so it will take some time to get in but that's fine.  :) 

[brynndolyn]

One more quirk which I just thought of - he is very literal.  When he is reading a book he might have a hard time understanding a joke or a play on words because it doesn't make sense to him.  If he keeps thinking on it he will eventually "get" it most of the time but it usually requires an explanation.  

 

He got a watch for Christmas and went around comparing it to other clocks.  He got visibly agitated when his watch said 1:35 but his bedroom clock said 1:37 and the kitchen clock said 1:34. Over the course of the day he kept getting upset when various clocks didn't match "Mommy, now the bedroom says 2:57 but my watch says 2:55".  He even told me "What's the point of having a watch if it doesn't say the RIGHT TIME?" He was near tears at this point. I explained not all clocks are exactly the same, they might be a few minutes off but you still have a pretty good idea what time it is. We had that conversation a couple times and I think he's gotten over it but even today he made a comment that his bedroom clock said X but his watch said Y.  Not sure if this is just a quirk or could point to something as well. I'm making a note of these things to bring up in our interview with the doctor so that I don't forget! It's hard to know what is relevant or what is just normal kid stuff.

[kbutton]

http://forums.welltrainedmind.com/topic/559283-primitive-reflexes/?hl=%2Bprimitive+%2Breflex&do=findComment&comment=6503343

 

Mom28GreatKids, note the link in post number 3 from Heathermomster's link. It has a lot of information.

 

Basically retained reflexes keep the body/brain from doing things in a developmentally appropriate way later down the road. The severity will vary from child to child. I would characterize my older son's issues with reflexes as something that kept him from active participation in sports and even some daily activities. His vision didn't work quite right, and his sensory system perceived threats that weren't threats and didn't perceive things he should have. For my younger son, it seems that the reflexes interfere with literally everything. He can't sequence motor movements easily, and you need that for everything you do, especially if you want ot have any brain available to do more than one thing at time, such as talking to another student when you are writing things down on a piece of paper. Remembering that the physical task you're doing is connected to a sequence of events or a larger set of tasks. It's harder to do that if your brain is using all it's resources to do the things other people's brains automate for them.

 

Some stuff you find on retained reflexes sounds a little woo, but for even the far out stuff (links between reflexes and emotion), when I think about how reactive my son was before therapy, I think it's possible that reflexes play a part. People could not approach him from behind without him having a visceral and totally unconscious fight or flight reaction. He could not lean back without feeling a sense of doom to float on his back in the water, etc. for a long time. To enjoy being on a swing where he had to pump his legs, he spent a great deal of time "desensitizing" himself to that bad feeling in order to be able to swing high and enjoy it with his friends (he did this on his own). So, I can totally see how non-integrated reflexes could cause emotional problems in someone who experiences the reflexes as altered bodily sensations. As odd as it sounds, I know several people (in addition to myself) that have found dental visits distinctly less pleasant and more unnerving since dentists have switched to chairs that totally rather than partially recline. (Yeah, I know that sound nuts!)

 

HTH

[Targhee]

One more quirk which I just thought of - he is very literal. When he is reading a book he might have a hard time understanding a joke or a play on words because it doesn't make sense to him. If he keeps thinking on it he will eventually "get" it most of the time but it usually requires an explanation.

This may just be his personality, but not "getting" the subtlety of language (the language pragmatics) is a hallmark of ASD (though it can be seen in ADHD too). I do think it is important to bring up when you are able to get in for an evaluation.

 

The time/clock-watch thing may also just be a developmental or personality thing. Often times the way (or degree to which) a person reacts (anger, emotional overwhelm, overly concerned/obsessed) about little things like that tell more than just reacting.

 

I am happy for you to have found a place for evals!! A month is actually much shorter than waits around where I live, and much, much shorter than waits to get in for therapies. I know it's still a *long* month when you are waiting for answers. Best wishes for you and DS on this voyage of discovery!

[kbutton]

This may just be his personality, but not "getting" the subtlety of language (the language pragmatics) is a hallmark of ASD (though it can be seen in ADHD too). I do think it is important to bring up when you are able to get in for an evaluation.

 

The time/clock-watch thing may also just be a developmental or personality thing. Often times the way (or degree to which) a person reacts (anger, emotional overwhelm, overly concerned/obsessed) about little things like that tell more than just reacting.

 

I am happy for you to have found a place for evals!! A month is actually much shorter than waits around where I live, and much, much shorter than waits to get in for therapies. I know it's still a *long* month when you are waiting for answers. Best wishes for you and DS on this voyage of discovery!

 

:iagree:

[SonshineLearner]

 

I originally posted this on the Chat Board but someone suggested I try here.

 

I have suspected for quite some time that my 7 yo DS (he'll be 8 in March) has some form of attention deficit disorder. We homeschool so I felt like that would give him some room to mature if it was just lack of maturity, and give him some grace to have extra play time etc. 

 

My husband is getting pretty fed up and would like to get him tested and possibly start medication, assuming of course that he does actually have this. 

 

 

So, any thoughts on the new doctor or trying to pursue this with our current one, any feedback on any of the symptoms, etc.? Anybody BTDT?  I feel a tremendous amount of guilt about this and I do not know why. 

 

Sorry this is so long, you get a gold star if you've finished!  :)

 

So, most interesting, is whose side did he get ADD/ADHD from?  I would never just go to "A Doctor" for this. Our psych evals cost about $25 and are great. I almost think it's necessity! Then you get the diagnosis from them. I also think that getting both parents tested is a good thing to do. It gives you insight into relationship dynamics :)  Meds are beautiful! Yes, there are side effects... and some of those are issues. Giving proper meds helps your child gain skill sets... make them more enjoyable to be around... helps with relationships... and will leave you less guilty if you do it sooner than later.... It's like... if your child needs a wheelchair... but can just scoot around.. would you make them do it? Good Luck! :)

[oneangelwaiting]

So, most interesting, is whose side did he get ADD/ADHD from? I would never just go to "A Doctor" for this. Our psych evals cost about $25 and are great. I almost think it's necessity! Then you get the diagnosis from them. I also think that getting both parents tested is a good thing to do. It gives you insight into relationship dynamics :) Meds are beautiful! Yes, there are side effects... and some of those are issues. Giving proper meds helps your child gain skill sets... make them more enjoyable to be around... helps with relationships... and will leave you less guilty if you do it sooner than later.... It's like... if your child needs a wheelchair... but can just scoot around.. would you make them do it? Good Luck! :)

He's adopted so I guess the answer is that he didn't get it from either one of us. ;) But an interesting thing I learned when my youngest son was in the NICU is that very premature kids are more like to have ADHD. DS2 and DS7 were both born at 29 weeks. So I am not sure how or if that factors in as well.

 

And thank you for the analogy about the wheelchair, that makes perfect sense. :)

Edited January 1, 2016 by oneangelwaiting

[PeterPan]

Thank you all so very much. I found a place that does all kinds of assessments including mental health, learning disabilities, etc. so I gave them a call to get the ball rolling on that.  There is an interview before any testing starts so that they can decide what tests would be most beneficial and I will be sure to mention the CAPD.  They are booked out at least a month so it will take some time to get in but that's fine.   :)

 

 

One more quirk which I just thought of - he is very literal.  When he is reading a book he might have a hard time understanding a joke or a play on words because it doesn't make sense to him.  If he keeps thinking on it he will eventually "get" it most of the time but it usually requires an explanation.  

 

He got a watch for Christmas and went around comparing it to other clocks.  He got visibly agitated when his watch said 1:35 but his bedroom clock said 1:37 and the kitchen clock said 1:34. Over the course of the day he kept getting upset when various clocks didn't match "Mommy, now the bedroom says 2:57 but my watch says 2:55".  He even told me "What's the point of having a watch if it doesn't say the RIGHT TIME?" He was near tears at this point. I explained not all clocks are exactly the same, they might be a few minutes off but you still have a pretty good idea what time it is. We had that conversation a couple times and I think he's gotten over it but even today he made a comment that his bedroom clock said X but his watch said Y.  Not sure if this is just a quirk or could point to something as well. I'm making a note of these things to bring up in our interview with the doctor so that I don't forget! It's hard to know what is relevant or what is just normal kid stuff.

 

Yes, it sounds like you have some rigidity there.  It's good that you're getting complete evals where everything will be on the table.  

[Mom28GreatKids]

Thanks kbutton. Makes sense. So interesting. Will have to read more about the retained reflex idea.

[oneangelwaiting]

UPDATE: We just got a an official diagnosis today! He does have ADHD. I'm strangely relieved. DS went through about an hour and a half of testing in addition to an interview, and DH and I did an interview and really really long questionnaires separately. So I don't feel that it was rushed into by any means, the doctor who diagnosed him does not do ongoing care and didn't think therapy would be helpful for my son's situation.

 

Long story short, the doctor said he doesn't prescribe medication and recommends working with your pediatrician to find medication that works just enough so DS can focus a bit more but not to the point where we can see any personality changes.

 

Sooo we have an appointment scheduled with the pediatrician next week. I'm nervous about it, I'm not really sure why because if a medication doesn't work for him then we can just change it right? Like it's not that big of a deal?

 

Any advice, any places I can look for information before we go, any words of wisdom are much appreciated!

 

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[PeterPan]

Early Behavior Therapy Found to Aid Children With A.D.H.D. ...

 

The psych's suggestion that therapy would have no benefit may not be correct.  Read this recent article in the NYT.  Our psych (otherwise well-regarded) had similar incorrect things to say about ds.  You SHOULD get an OT eval, SHOULD pursue behavioral changes, etc. etc.  Medication does not have to be the first step.  It's fine and useful, but it's not the ONLY thing you can be doing.

[Targhee]

Having a name (or label) for the things you have observed in your child can be very helpful, and I think often parents feel a relief. There's a sense of "I'm not just doing a lousy job as a parent, I just have someone who thinks and behaves differently. This square peg won't fit in a round hole, and we'll both be happier when we find the spot they do fit in." Always be an advocate for your child, and never let the child or you give place in your minds and hearts to the moral scrutiny that still persists around ADHD.

 

Yes, if a med doesn't work or the side effects offset benefits you can try another. Be patient though. I think meds can be a great thing. But they can't be the only thing - you're in for an adventure of discovery on what makes your kid tick and how you can help them flourish.

 

As far as resources for ADHD generally I really like books by Dr Hallowell and books by Dr Russel Barkley. They are positive, objective, and have good suggestions not just for helping your child with ADHD but for viewing ADHD in a positive light. If you have some big behavior issues I also really like The Explosive Child by Ross Greene.

[Heathermomster]

UPDATE: We just got a an official diagnosis today! He does have ADHD. I'm strangely relieved. DS went through about an hour and a half of testing in addition to an interview, and DH and I did an interview and really really long questionnaires separately. So I don't feel that it was rushed into by any means, the doctor who diagnosed him does not do ongoing care and didn't think therapy would be helpful for my son's situation.

 

Long story short, the doctor said he doesn't prescribe medication and recommends working with your pediatrician to find medication that works just enough so DS can focus a bit more but not to the point where we can see any personality changes.

 

Sooo we have an appointment scheduled with the pediatrician next week. I'm nervous about it, I'm not really sure why because if a medication doesn't work for him then we can just change it right? Like it's not that big of a deal?

 

Any advice, any places I can look for information before we go, any words of wisdom are much appreciated!

 

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Have you located any child pyschiatrists in your area?  With a child psych, you can get a baseline TOVA prior to meds.  While on meds, a TOVA may be run to determine whether the meds are actually working.  You can also request that a DNA test be run on your child to help pre-determine whether he will be able to metabolize the meds and reduce negative side effects.  My son's psych recommends OT/PT work.  Therapy is about working with the parents and child to effectively incorporate behavior modification and develop executive function with your young child.  Meds are far more effective when behavior therapy is part of the process.  Lastly, a med trial is a big deal and can be quite disruptive to your child and your family.  I recommend all the above because if you are going to administer meds to your son, I want you all to have the best possible outcomes.  Obviously, there are no guarantees.  I would not turn to a pediatrician unless they have the ability to order a TOVA or the metabolic screening.

Edited March 1, 2016 by Heathermomster

[PeterPan]

Fwiw, many peds and psychologists do the TOVA or another computer test as well.  If you don't have insurance to bring the price down, the price of metabolic screening is prohibitively expensive.  And even using a p-doc in our area would be $300 an hour with monthly visits, just way beyond what most people around here can afford.  

 

I'm not disagreeing it's good care.  Just saying if you can't afford it, you get stuck with what you can afford.  Of course, that brings up the more cynical observation that it costs less to give kids the meds than to do behavioral therapy, so guess which is the more common.  ;)

[oneangelwaiting]

Ah you guys I don't know! He's been evaluated by a PT (once with the school district when he was 2, once about a year ago by my the company my youngest son was using for OT/PT) and both times they basically said he's fine. So if I were to call to have him evaluated what do I even ask for?

 

I have a friend who "did her research" and basically her pediatrician allowed her to self diagnose her kid with ADHD and to chose the medication to give him. I don't want to be that mom!

 

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[PeterPan]

It's common to have issues with bilateral stuff, retained reflexes, handwriting, self-regulation, etc.  He's 7 and been checked twice.  The main thing you'd want to figure out is whether they checked him for retained reflexes.  Some OT/PTs do and some don't.  You can google to find videos of the tests and check yourself.  The school evals are really about whether there's *so* much discrepancy that they have to provide services.  They aren't a statement of what is medically necessary/useful.  

 

What drove you to get him checked by the OT/PT twice?  What's going on?  That's pretty conspicuous when someone is seeing enough that they're repeating the evals saying they missed things...

[oneangelwaiting]

He was born at 29 weeks for starters, he's been somewhat delayed hitting milestones (not super delayed, just a bit). Not uncommon for a preemie. When was young he was just very awkward, kind of hard to explain. Lots of falling over and tripping when other kids his age were beyond that. On longer walks he'll complain that his feet or legs hurt, his younger siblings can walk further than he does without complaint. His arches are very flat, I've taken him to a pediatric foot doctor and he basically said he sees what I'm talking about but there isn't anything they can do, just to make sure he's wearing shoes with a good arch support.

 

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[nature girl]

My ADHD DD was also born premature (and is also adopted. :) ) She had delayed milestones, and was diagnosed a couple of years ago with mild DCD, which isn't uncommon for ADHD kids as a comorbidity.

 

 

Sooo we have an appointment scheduled with the pediatrician next week. I'm nervous about it, I'm not really sure why because if a medication doesn't work for him then we can just change it right? Like it's not that big of a deal?
 

 

I have a friend who "did her research" and basically her pediatrician allowed her to self diagnose her kid with ADHD and to chose the medication to give him. I don't want to be that mom!

 

 

We have decided not to medicate (yet), since DD is home schooled and I can accommodate her needs at this point. I know meds can be a godsend for many, but I'd urge you to do your research before jumping in. It's a big decision, and from reading your notes above it's one I think you probably want to make sure you feel comfortable with and fully knowledgeable about before starting.

 

Here, we want to feel like we've tried everything else available to see how far we can take her naturally, so we've made dietary changes, have done behavioral work at home, do daily heavy work and weekly OT including Zones of Regulation to help with emotional regulation, are doing mindfulness and using supplements and essential oils. And even though she's definitely still ADHD and has big issues with frustration, this work has made enough of a difference that we're able to get through the days without too much struggle, and academically she's at grade level or ahead. (Compare this to last year, before diagnosis, where she wouldn't sit with me for 5 minutes to do math, was sometimes aggressive, and was borderline ODD.) Today we're starting therapy, even though I'm not sure how much it will help, just because I want to feel like we've used all available means of helping her before turning to meds.

 

I'm not against using meds at all (I swear I read research about it almost every day, trying to figure out what's best for her), and I'm guessing eventually we'll take that path. But we're holding off for now, while DD is still young and manageable. All this to say, if you're feeling uncomfortable, there may be other ways to help your son and it might be worth exploring them first.

[PeterPan]

nt

Edited March 1, 2016 by OhElizabeth

[Lecka]

Personally it sounds like you have gotten good advice from your appointment and can feel free to go to your pediatrician.

 

My comfort level is high with knowing other kids who have had good results. 

 

And where the results were not good, they changed or stopped the medication.

 

There is always, always, always going to be some new study out that makes it seem like maybe something different is better.  And maybe something will be better!  We still have to make our decisions with our current information and with trusting our health care and with doing our own research.

 

I am only commenting b/c it seems like others are posting reasons not to in some ways.

 

But for me I think it seems fine to go ahead if you are ready and if you have a good feeling about it.

 

But it needs to be what is right for you and your comfort level.

 

And just b/c I like this book ----- if you are looking at behavior-type ideas, I like the Alan Kazdin books.  They are not specific to ADHD, so there might be better books for ADHD, or there might be ways they are not appropriate (which is usual with books lol).  I do like them, though. 

 

Edited March 1, 2016 by Lecka

[oneangelwaiting]

Personally it sounds like you have gotten good advice from your appointment and can feel free to go to your pediatrician.

 

My comfort level is high with knowing other kids who have had good results.

 

And where the results were not good, they changed or stopped the medication.

 

There is always, always, always going to be some new study out that makes it seem like maybe something different is better. And maybe something will be better! We still have to make our decisions with our current information and with trusting our health care and with doing our own research.

 

I am only commenting b/c it seems like others are posting reasons not to in some ways.

 

But for me I think it seems fine to go ahead if you are ready and if you have a good feeling about it.

 

But it needs to be what is right for you and your comfort level.

 

And just b/c I like this book ----- if you are looking at behavior-type ideas, I like the Alan Kazdin books. They are not specific to ADHD, so there might be better books for ADHD, or there might be ways they are not appropriate (which is usual with books lol). I do like them, though.

Thank you very much! I don't want to sound like a slacker or a horrible mother, but I have 6 kids. I homeschool 2.5 of them, I'm here with 5 of them all day long by myself. We do ballet and cub scouts, we play outside every single day even when it's bitter cold and go to the park and go on walks, in addition to normal life stuff. I quite simply can not get to therapy or the gym or anywhere multiple times a week especially with all there is to do and little ones who require us to be home for naps, our health insurance deductible is ten thousand dollars a year, I mean some of this is quite honestly not feasible financially or time wise at this time. I'm not saying never ever but. I will be reading up on options, thanks to everyone for the info I do appreciate it! We have an appointment with our ped next week since he needed one for his annual check up anyway so I will see what she has to say.

 

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[Tiramisu]

He was born at 29 weeks for starters, he's been somewhat delayed hitting milestones (not super delayed, just a bit). Not uncommon for a preemie. When was young he was just very awkward, kind of hard to explain. Lots of falling over and tripping when other kids his age were beyond that. On longer walks he'll complain that his feet or legs hurt, his younger siblings can walk further than he does without complaint. His arches are very flat, I've taken him to a pediatric foot doctor and he basically said he sees what I'm talking about but there isn't anything they can do, just to make sure he's wearing shoes with a good arch support.

 

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Has he been evaluated by a good pediatric neurologist for these issues? These things can indicate medical conditions that you'd want to rule out.