Gifted Issues Discussion homepage Forums Twice Exceptional If not ADHD, what?

Most important thing is to take a deep breath and know you aren't alone. No two kids are the same but with all the people on here elements of your experience will resonate with others, they do with me. DD used to be impossible in the mornings before school, doing anything but getting ready. Now she is older she is better. She has worked out how long it takes to get ready and won't start dressing or doing teeth until that time!!
I was thinking about the Tourette's diagnosis. When DD was having a particularly bad year at school she had some interesting repetitive behaviours, mouth movements like yawning, chewing hair etc that went away when the anxiety was removed by going to a full time GT class. Sensitive kids do odd things. Of course he may well have Tourette's but anxiety will certainly exacerbate tics.
Is he being challenged at school?? We discovered DD was more gifted than her initial SB V indicated when she was retested but also when she was eventually challenged appropriately she took off! When not challenged she has presented with anxiety and depressive symptoms.
For exercise a trampoline was the best buy we ever made. She jumped for hours.
Let you know how the visual spatial testing goes.

Have you taken a look more closely at the classes and courses you said he excels at? What is different in those vs. his school? Also what is the structure like at classes/camp vs. school? I was talking to one tester when we were struggling with one school and she was telling me that a certain subset of gifted learners actually can not learn, and truly suffer, in a more open environment like Montessori b/c without the structure they can't find their bearings of where to stop, focus, start learning etc. Just a thought, but sometimes you have to "flip" the problem to see what works and why, and then deconstruct what doesn't.

Only thing that I wondered reading your post is whether you are trying a high enough dose of meds. We didn't see any effect either with lower doses. With Daytrana, we had to go to the highest dose possible (30 mg)--the 10 and 20's didn't make any obvious difference. If you've gone up to a high enough dose, then it seems strange that the meds don't help at all if it's really ADHD. You could try some non-stimulants and see if they do anything before giving up. There is a book by Amen "Healing ADD" about ADHD and the different types and how stimulants can actually make some forms of ADHD worse. It also suggests some over the counter options and other alternatives.

This was always my understanding... it has to be consistent across multiple settings(and it's not the case with my DS. I'm not entirely convinced he doesn't have ADHD, but I think it's mild and exacerbated by sensory issues).

I'm not sure if all of the CLEF categories were tested... there were 6-8 scores if I recall. He was only ahead in one category (basically normal in the rest), but ahead by 5:3 years. The SLP said "yeah... on paper it's hard to see that he needs help." lol.

To further put this into context, two years ago, in a related area (expressive language) on his psycho-ed assessment he scored in the 10th percentile (for receptive it was even worse: 0.5th percentile). The psychologist at the time said she thought that his ADHD was impacting the test scores, so when I saw the CLEF results I was relieved. She recommended that we medicate him (haven't yet) and get another psycho-ed assessment in a couple of years to try and pin down his scores (haven't yet and likely won't).

Speaking of paper... gosh I wish he'd quit ripping it!! His books are a mess.

My son LOVES gum too He's not allowed to have it at school, but I bought him chewable pencil toppers:

http://www.nationalautismresources.com/cheweze.html

...which were fabulous when he needed them. He's stopped chewing now and moved on to paper ripping.

Btw - his sensory issues (which have gotten milder) were so bad that the school was convinced he had autism, which we've since ruled out.

Re: gum - he also takes it out of his mouth and plays with it (cringe) and blows massive bubbles that get stuck on his face. We have a new rule that if there is any gum left that he can't get off, he loses his gum chewing privileges for a week. LOL it works... he's really careful now

Re: exercise: my son could use more too. Sometimes if he's wiggly during home work I have him take a "running break" where I get him to race up and down the hallway as fast as he can. He loves it. I yell "go! go! faster! faster! c'mon!" and he laughs as he runs.

Ndw, it actually does seem like he has Tourette’s. Before the evaluation, I noticed the humming, blinking, and throat clearing that he did but it just didn’t even enter my mind. The more I’ve been reading up on it, though, it really does sound like him (those were his first tics, the ones the tester noticed, but now he has different ones). But, I do have no doubt that his anxiety, which has been much worse lately, exacerbates them.

Sadly, he is not and has never been challenged intellectually in school. I don’t count writing as being challenged, because it is obvious to me there is something going on there. I have been trying to work with the school since kindergarten (minus the year of homeschooling) to get him what he needs. It has gotten a tiny bit better because now his math teacher lets him work on a higher level packet during class (but doesn’t give him instruction) and lets him do Art of Problem Solving instead of most of his homework. So, while I hate to complain about this, he’s still not getting what he needs in school because he’s either just working on his own without the teacher, or having to fit in the AOPS after a full day and other homework. He says he is happy and likes school, but I’m concerned because the anxiety makes him very resistant to change, even good change.

I would love to get a big trampoline, but we have no yard.:( We do have a small indoor one; I need to think of ways to make it fun to jump on it for a significant amount of time.

Mykids, that’s interesting. I do feel like my son definitely needs a structured environment to learn best. Even at home, he has a really hard time figuring out what to do in his free time (unless of course he’s allowed to use the computer). I always just assumed school was nicely structured. The classes and camps he’s done have all been chosen by him, so the topics were ones he’s interested in. Even if they weren’t very academically challenging, they included a lot of fun elements (art, structured play in nature, science) and no written output required. He was allowed to register for a chemistry class for 7th and 8th graders (he’s in 4th) for the week of Christmas, and I don’t think he’ll have any issues.

Thank you everyone for your thoughtful responses.

Hi sciencelover. We just got back from assessment with the educational specialist for my DDs visual spatial learning. We will get the report in a few days. The specialist talked to DD a lot about visual spatial learning. One thing she recommended was learning to touch type to help overcome both the physical difficulties of writing, but also the mental challenges of getting started with writing. The following site is free and is for kids.

http://www.bbc.co.uk/schools/typing/

She told DD that when she can't think what to write to just download her thoughts by typing. I have seen a suggestion where kids type with the screen off or covered so they can't see what they are typing. It lets them write freely without getting caught up in typing errors or self editing. Thought that might be something to try with your DS.

The specialist also talked about the value of mind mapping. There is an app for mind maps. Look at www.inspiration.com

For exercise, DD has a fit ball for physio. There are a lot of exercises you can do with it that strengthen the core muscles and can be surprisingly tiring while kids stil feel they are having fun.
If we get any other tips that might be worth a try I will pass them on.
Hope you are finding a way forward.

Hi sciencelover - I registered so I could respond to your message, because your son sounds so similar to ours. (I also have social anxiety, so I'll probably worry about this message for a few days!)

Ours is not quite as advanced, but he taught himself to write at age 3, to add and subtract 2-digit numbers, and to read chapter books before kindergarten. He has sensory issues, like not liking lotion or to brush his teeth, lying down all the time, and poor handwriting. He is a happy person, but has a low frustration tolerance and can't modulate his emotions.

We did a round of testing and the first diagnosis was ADHD. The psychiatrist we went to recognized that other things were going on too, but recommended treating the ADHD first, because it will make other services more successful if he can pay attention.

We tried Ritalin, Concerta, Metadate and Adderall in a variety of doses. No positive impact, just side effects. I find it hard to get people to believe me.

We tried Tenex, which is a blood pressure medication used off-label for ADHD. Nothing good happened. He was tired, irritable, and at a higher dose got a very bad headache. No positive impact.

We tried Zoloft, with the idea that it would reduce anxiety or OCD tendencies and smooth out negative emotions, so maybe he wouldn't react so strongly to everything. It worked for that, but his impulsivity was worse and became more obvious, because he didn't care as much about consequences.

At this point, the psychiatrist is leaning toward saying he is on the autism spectrum or has a social communication disorder with ADHD. (My son looks people in the eye and has some friends, but his stories do not make much sense and you have to ask him questions.) I get frustrated too with how doctors and therapists focus on one thing like ADHD and see everything through that prism, but I can also see now that they have to make it fit in certain boxes to get insurance coverage and services at the school.

It appears from articles on the internet that kids on the autism spectrum with ADHD tend not to respond reliably or predictably to ADHD medication. Perhaps kids with other issues, like expressive language disorder and ADHD, don't respond to the typical ADHD medications as well.

Our son is going to get a full evaluation at his school next month. I am hoping they will diagnose an expressive language disorder qualifying him for speech and language services, OT for his sensory issues, and maybe even a behavior intervention person to help him learn how to respond appropriately in the moment.

The next medication that we can try is an anti-psychotic, Abilify, which I understand is approved at a low-level dose for autism and is being prescribed off-label for kids with ADHD who don't respond to the typical ADHD medications. Like all the medications, it has serious side effects to consider. I think Abilify is used to control tics as well, or something in this category of medications is. The psychiatrist said Abilify has fewer negative side effects than Risperdal and the others. As I understand it, the mechanism is sort-of the opposite of the stimulant medications. Also, I think it's one where we should know pretty quickly if it helps.

Anyway, I mostly wanted to say that I sympathize. Our psychiatrist said that she would have recommended the stimulant medications first even if his other issues had been more clear, because they are the most benign of the medications that kids try for these issues - the kids respond quickly (or not) and the medication is in and out of their systems quickly, and if it works, the other treatments progress more quickly and effectively. At least now I don't have to worry about him ever abusing stimulants!

Thank you very much, ndw. I didn't realize how helpful typing could be even if the biggest challenge isn't the physical act of writing. I have not been prioritizing it, but will start. We have used that bbc typing site a little already, and I'll make sure he does a bit every day. I'll also take a look at Inspiration. Thanks again!

Thanks for the commiseration, hardtochoose. It is so frustrating to not know what's going on with your kid. Before he was evaluated, my brother and one counselor had suggested that maybe he has Asperger's, but I never thought he did. The testing psychologist confirmed my instinct by telling me that he is definitely not on the spectrum (she has worked with autistic people for 25 years and also evaluated my younger son, who DOES have autism).

That is great that the school is going to give your son a full evaluation. We usually just find more frustration when dealing with our school. I asked about evaluating him last year (because of his writing issues), and they never did. Then, I thought they might be more willing to do it this year since he has the ADHD diagnosis, but nope. I guess they are doing RTI, but frankly it sucks for us. They put him on a behavior plan for 6 full weeks of school (not counting partial weeks) to determine if the writing thing is a behavior issue or skills issue, then after winter break they will start him in a small group intervention thing and then finally after 6 weeks of that they'll decide whether or not they will evaluate. If they decide to do it, it will be almost the end of the school year by the time it happens. I REALLY wish I could afford private educational testing, or a neuropsychological evaluation or something that might finally give me some accurate answers.

I do have good news--we finally got an appointment at a different place for an OT evaluation. It's the same place he just recently had his speech eval, and I'm hoping they have plenty of experience with sensory issues. It's not for another month, but at least we're not still on the wait list.

My son has been taking Zoloft for a couple years and I was actually thinking that we need to increase his dose, as he has been have a lot more anxiety. I didn't realize increased impulsivity could be one of the side effects. Now I know to watch out for it if we do increase the dose.

Thanks again for the reply, and sorry this is so rambling and disjointed. I'm running on little sleep today.