Not exactly ADD....

[TheVBs]

I would really welcome any advice from parents out there who have dealt with a non-typical ADD child. We've tried the stimulant medications and while they have some slight positive effect, they just really don't do much for her. We're now trying a non-stimulant medication, waiting for her to be on it long enough for it to take effect. We've been told that for a straightforward ADD diagnosis, the stimulants work for most kids, and work dramatically. Because DD12 has a complicated medical history, and extreme anxiety that was triggered by a medical event, she's in that grey area. She's done an amazing job of getting the anxiety under control, gets good grades, but now has an ADD diagnosis because she is extremely distracted and daydreams quite a bit at school. Has anyone had positive results from the non-stimulant medications? Are there any behavioral techniques that you've found are successful? Any advice would be great. :(

[Dulcee]

I don't have any personal experience so you are more then welcome to ignore the suggestion.

I work in scientific research, the lab next to mine looks at (amongst other things) behavioral techniques for treatment of ADD/ADHD. One of the projects they are working on involves attention and focus games. They're pretty confident they're seeing improvements in kids who spend time playing them, 10-15 minutes daily. Kind of like aerobics for your brain. Essentially that even brains that may not be neurotypical can be trained to improve their ability to focus and shut down that want to daydream and wander.

Any mind games you can find as apps for iphones/ipads are similar. Look for ones that improve focus, memory and attention. If your daughter enjoys video games/playing with apps it might be something easy to integrate and brain stimulating games never hurt!

Good luck, I hope someone on here has some more personal experience for you.

[TheVBs]

Thank you! I am willing to try anything. Do you have any suggestions for searching for those kinds of games. The only thing that immediately comes to mind is one of those matching games where you flip the cards back over and try to remember where they were. Something like that?

[Dulcee]

If your searching through apps try searching for Mind Games...ones that come to mind are Lumosity Brain Trainer.

Online if you search for attention training games you'll get quite a few hits. You'll also find ones specifically for kids.

The types of games they use over here tend to be short (30 seconds - 3 minutes) and simple. Things like arrows flashing on a screen and having to quickly focus on the center one and choose its direction or following where a hidden object (think three cups and you hide a coin under one) has gone. Quick simple but pretty effective at teaching anyone's brain to focus better.

[DVC2004]

I agree with giving the games a try, and I will also say it may get better with age, too. My oldest is autistic, on the mild end of the spectrum and daydreaming/lack of focus at school was an issue. I really was hesitant to medicate him, but I finally agreed to give it a try after years of being advised to put him on. Well, not so good. He was prescribed Vyvance and I saw no change initially. I even did not tell his teachers he was medicated so they would have an un-biased opinion when I asked later if he was more focused. He wasn't more focused, and I then told them about the meds he had been taking. So, they upped his dose. That was very bad- he had a reaction and began to hallucinate that there were insects on him. It was terrible. And he's super frightened of bees so you can imagine, he was just terrified and jumpy and very anxious. It took several days before he was better because the medication had built up in his system. I took him right off and he hasn't taken anything since.

At any rate, he was 11 or going on 12 at that time. He's almost 16 now and has way better focus. He still day dreams but it's much better than it used to be.

Anyway- you know what is best for your child. If you don't see improvement on the meds there's no point in keeping on them. Talk to your doctor of course though. Good luck.

[tinklover]

Both of my girls (10 tomorrow, and 8 yrs old) are on the Autism spectrum and have ADHD, SPD, and Anxiety-NOS. my oldest was diagnosed first and was placed on a stimulant and the meltdowns were insane. she would have 10+ a day. she and her sister are now on a non-stimulant and the meltdowns have decreased tremendously. my youngest still drifts off somewhere else in class but not as much as she did. I have found that keeping a visual schedule for them has helped and keeping a routine has helped. Consistency is the key.

[stephicakes]

Hi VBs! I totally understand what you are going through! My DD (now 16) was diagnosed with ADHD in the 4th grade and we have tried various medications in the past to find the right balance to help her get through the day without over-medicating. I, for one, prefer natural remedies whenever possible so mediating my child at that age with strong medication was a hard pill to swallow (pun intended!). Many have strong side effects - we experienced loss of appetite, lethargy - and it was bad enough that I finally decided to have her stop taking them and start focusing stronger on other methods to help keep her focused. I listed some things below that helped us. That being said, she started struggling again at the beginning of high school and she agreed that trying meds again may help. At that time, she was failing some classes and cried every morning and evening due to the anxiety of the school work. Between all the doctor’s appointments, school meetings, and the attention she needed from me, I was missing so much work that we made the hard decision for me to stay home and focus on getting her back on track and through high school. I got to work right away working with her doctor and teachers to get this kid in a better place that works for HER (not the school agenda). She is now in 11th grade, off meds completely, and made honor roll last semester. Unbelievable! Hope some of these suggestions help!

• Time helps. As my daughter got older, maturity seemed to help level things out and she learned what “studying strategies” work for her.
• Research a 504 Plan just in case. This is something to ask your child’s doctor about and contact the school psychologist about. It helps kids with disabilities (yes, even ADD & ADHD) get the modifications in place so that their environment is conducive with their special learning needs. For my DD, it was placement at the front of the class (less distraction), a quiet room away from the other kids for testing, and longer times for tests. Any little thing would throw her off during a test (someone gum chewing, taping a pencil, coughing, etc.) so the separate room is wonderful. She is also allowed slightly more time for testing so that the anxiety of the ticking clock/deadline is alleviated slightly. There are other kids that get this modification so she does not feel singled-out (high school is tough enough without feeling this, isn’t it?!)
• Teacher “ques”. Her teachers have been wonderful and are willing to work with her to help her succeed. If they notice that her mind is wandering (looking up at the ceiling, etc.) they will subtly tap quietly on her desk or touch her shoulder as they walk by to “bring her back” to the task at hand.
• Changes at home. We have created a very quiet area where she can study and do her homework. Again, any little distraction would break her concentration (our dogs, noises from the kitchen, activity outside seen from a window) so we created a quiet study nook for her to do her work. When she was younger, we would play “beat the clock” and make a fun game out of trying to get an assignment done before the timer would go off. This helped her to focus on the task at hand under “fun” time constraints. Unlimited time to do things often lead to more procrastination (due to anxiety of the task). Try to make a game out of it with some reward (albeit small) at the end. I also used to send her core teachers a “status check” email every week to stay up on her assignments.
• Be your child’s biggest advocate. Schools will often push to get your child in the hardest classes possible (in hopes of jump-starting college credit in high school) and that doesn’t work for every child. My DD was in too many advance placement classes (as recommended by her school) that she was under so much stress she cried every day and wanted to quit school. I fought so hard to get things switched around that it took a doctor’s note to the school in order for them to allow the switch. YOU know your child best. Do whatever it takes!!

I know that not all of these will apply to your DD, but I wanted to list out what I thought of for now in hopes that someone else reading this might see something that could help their situation. Every child is different – medication may or may not work. There is also a holistic food approach out there as well. My biggest advice is to just be available and listen to your child. Often, my DD would tell me what would work best for her. I am sure others will come along with more great suggestions. Hope all works out and feel free to PM me if you have any other questions!

steph
:)

[Kenny1113]

... There is also a holistic food approach out there as well....


steph
:)

I was going to suggest this as well. I know there are many people who do not think that diet helps, but for my DS11 it does. We have always been mindful of our children's diet by limiting sugars (esp artifical sweeteners) and processed foods. When we noticed troubles with DS and ADD (not ADHD) we researched holistic options and found a diet. It really helped DS a lot!!!! Huge difference, and when we don't pay attention to his diet and slip off we can see the change as well. Good luck!!!

[BrerGnat]

My son was recently diagnosed with Inattentive ADHD (he's almost 9). We started him on Adderall and have found a good dose that is making a lot of difference for him. He is also Autistic, so it's tough to know if his symptoms are due to Autism or ADHD. However, his doctor told us that if we saw ANY improvement with stimulants, we were dealing with real, organic ADHD. His improvement was quite drastic, and he has spoken freely about how much better the meds make him feel.

I can't give any advice about non stimulants, but our son's pediatrician (who specializes in ADHD, Autism, and related childhood conditions) does not like them at all for children due to their side effect profile. He does not feel they work as well as the stimulants do and many kids cannot tolerate them well. He told me before we started that if the stimulant medications did not work out for my son, he would not be willing to try non stimulants, particularly at his age. He feels better about their use in the adult population. He thinks more studies need to be done on younger kids taking them.

As for holistic approaches, you can believe what you want, but I tend to side with science on that one, and there is no scientific basis for diet being linked to ADHD. It is a malady of brain chemistry, which cannot be fixed with food. Some children certainly may be sensitive to certain foods or food additives, but unless you know for sure that is the case, special diets tend to be a placebo more than anything else, and for kids already struggling with issues, restricting their diets is one more thing they have to deal with that makes them "different" than everyone else. As long as you are feeding a wholesome, balanced diet with minimally processed foods, your child's ADHD is not being caused by diet.

[clausjo]

From my personal experience with my son (who has ADHD and Aspergers), I completely agree with Natalie. We initially tried non-stimulants first and they either had no effect or made him like a zombie. We noticed immediate effects once he started on the stimulants. However, it's a moving target. He's 13 now and growing effects everything. We've found that every couple of years or so we've either had to adjust the dosage and/or change the brand. I've heard the puberty years can be especially trying.

We specifically asked his psychiatrist about diet. She said essentially with Natalie said. There is no scientific evidence that shows that eliminating certain foods (dairy, wheat, eggs, sugar, etc.) will change his ADHD symptoms. Naturally, if all he ate was sugary and processed foods, it would most definately make a difference. In fact, she said that she has several patients that have had quite the opposite effect when they've changed diets. The kids can end up resenting the parents because they've now lost some of their favorite foods in addition to dealing with their symptoms, which causes other issues that now need to be delt with.

Naturally, you need to do what is best for your child and your family. I wish you the best of luck, it's not an easy road.

[TheVBs]

Thank you so much for all the responses! I really can't express enough how much it means to me that you guys are sharing your experiences. Things are so stressful here right now, with this, and a couple of other family crises, that it's been a little hard for me to cope.

Dulcee, thank you for the suggestions! I will search online for those types of games. Although I have noticed that when she enjoys something she has no problems at all focusing. Does anyone know, is that at all typical of Inattentive ADHD?

DVC2004, it is so great to hear that your son has improved with age. I have often wondered about that, but never really got a straight answer. I'm hoping that's the case with DD, that she'll develop better coping skills.

Tinklover, my DD also has Anxiety-NOS and I sometimes wonder if the daydreaming isn't a coping mechanism left over from that. Something she did to calm herself and that maybe has become a habit? I love the idea of a visual reminder. Maybe this is something she could use at school.

Stephicakes, thanks for all your advice! We struggled with trying the medication as well. We've gone through two stimulants and that doesn't seem to be the answer for us. And, I agree, if I weren't lucky enough to be able to be home with the girls, I don't know how I'd manage this.

Kenny113, it's good to hear that the diet changes helped your son so much! At one point, when other things were going on, we did look into whether she had some kind of food allergy or bad reaction to something. We came up empty on that. However, she's fortunately a really good eater and we're much better these days about the way we all eat.

BrerGnat, we were told the same thing. That if she had a straightforward case of ADHD that the stimulants were very likely to help. We're trying the non-stimulant not only in the (not very high) hopes that it will help the focus issues, but also to help undo the major tics that developed on the Adderall. :( I have to say that we don't have a lot of faith that these will help the focus. And, if I understand correctly, the only thing to try after this is a change in her anxiety medication. That's nerve-wracking because she's doing so well anxiety-wise, but there's another prescription that is supposed to help with focus too. ARGH!

Clausjo, "moving target" is the perfect description! We just keep hoping to find something that will help her. Thankfully, she tests really well and is an A/B student, but that doesn't take away from how much she struggles in class and how much help she needs to stay on task. We've got our fingers crossed that this will help her.

[BrerGnat]

Is it at all possible that your daughter is on the Autism spectrum? It sounds like her combination of anxiety, lack of focus on non preferred tasks, and other issues (motor tics) may be symptoms of Autism.

For what it's worth, the ability to focus (sometimes hyperfocus) on preferred activities is VERY common in Autistic individuals. That is my son in a nutshell. My son also has anxiety and stimming
behavior that comes off looking like tics, but its not.

When did your daughter start exhibiting all these issues? You mention it followed some sort of medical crisis? There are conditions that can result in autism like syndromes. Just wondering if this has been screened for and ruled out at this time.

Does she have good friendships? Any social struggles at all? If she has issues in this area, she very well may be on the spectrum, in which case medication may be the entirely wrong answer. Just thinking out loud here. Its so tough seeing our kids struggle so much and only be able to do so much. We only recently tried the ADHD meds because our son started having a really hard time at school. It's been a problem for a couple years, but we really hoped behavioral interventions would help. Looking back, we should have tried the meds earlier and done the behavioral therapies at the same time. Live and learn. :( I hate the feeling that my child is basically a Guinea pig. You never know what is going to help and what is not.

[TheVBs]

Great questions Natalie! I really appreciate how much you're trying to help. I'll do my best to give you the short versions of the answers, because it's all kind of a saga.

So, she has been tested twice for Autism, and officially it's negative on the diagnosis. However, without a doubt, people (teachers mainly) notice similarities with other kids on the Autism spectrum and have found that some of the tools that work for those kids also work for DD (at least for awhile). I cannot say that I've ever seen her hyper-focused. I have noticed that she easily gets stuck on an idea or topic, but I realize that's not quite the same thing.

The medical event, here's how this all started. She always had her well baby check ups and was in all the early learning programs here and there was never anything of concern. At 4 1/2 years old she got really sick. We think it was strep, but they never did a swab. What we know now is that the infection enlarged her tonsils and they never went back down. She likely already had some form of sleep apnea, but after the infection it was severe. Unfortunately, it took over 2 years to figure out this diagnosis. When we finally got her a sleep study they told us that while most kids with sleep apnea stop breathing 3-4 times an hour, DD stopped breathing about 18 times an hour. She was severely sleep deprived, basically psychotic with it. :( When she initially got sick, it was like someone flipped a switch. Her personality completely changed because of the sleep deprivation.

During that stretch she had hospital visits for all kinds of tests, they all came back negative. She wasn't able to go to school, activities or even go on playdates, she just couldn't cope. So we figure out the sleep apnea thing, get her tonsils removed (they were the size of golf balls!) and it's like we have our child back! This was in the spring when she was 6 1/2. She turned 7 that summer and we put her in school. That's when we realized that she had severe anxiety from the experience. She would have extreme panic attacks.

She's really come a long way and we are so grateful for that! She does have a best friend, who actually is on the Autism spectrum. She hasn't developed any other close friendships because this all set her behind socially and emotionally. Plus, for a long time she wouldn't speak to her peers, the stress was too much. We've now got the anxiety very much under control, and she's getting good grades, usually A's and B's. But, there's this huge focus issue. She looks completely in her own world when she daydreams, and she doesn't always interact with teachers and/or peers unless it's something that interests her.

I don't know how much all of that means in terms of figuring this out. She's the proverbial square peg not fitting any of the round holes.

[BrerGnat]

I don't know how much all of that means in terms of figuring this out. She's the proverbial square peg not fitting any of the round holes.

Sounds like my younger son. He has no official diagnosis other than Speech Apraxia, but he's so darn close to being diagnosed with ASD that we just go with that. He has definite sensory and social issues, but he's so unlike our other son and he doesn't quite meet the ASD DSM IV criteia. He also has some OCD symptoms and Tourette's type symptoms (motor tics). At one point we thought he was having absent seizures. He's only 6, so he's still our unsolved mystery. For the sake of simplifying stuff, he has a diagnosis of Autism through the school district, which gets him the services he needs.

Sounds like you are dealing with mostly leftover issues from all the medical drama (sorry you had to go through all that, by the way...sounds awful.)

Does she have an IEP at school or any sort of official accommodations? Have you pursued any sort of testing through the school?

[TheVBs]

She does have an IEP thank goodness. She really gets a lot of support at school. I don't know what we'd do without it. They have tested her and repeat the tests every couple of years or so to look for any changes.

Yeah, the medical thing was devastating. She has come such a long way though. In first grade our goal was to simply see if she could make it through the day at school. Nothing else, just be there. Now she's in 6th, an A/B student, but needs a lot of help staying focused and on task. We're grateful for how far she's come, but just want to be able to continue helping her.

Natalie, I'm so sorry for all you and your sons have gone through. They're like puzzles aren't they? And the solutions are ever changing!

[Goofy4TheWorld]

I am in this saga with you, and don’t have much to offer except my experience, which is still very much a work in progress.

In November 2011 my THREE year old son was diagnosed with ADHD impulsive type as well as Oppositional Defiance Disorder (and when we read the criteria for ODD, we said BINGO….and then cried a whole lot). My son was extremely wild and very defiant, life with him had always been a struggle, but when baby brother came along it became impossible to live with (and accommodate) his constant defiance. He was a runner in parking lots, always unbuckling, chasing cars into road, way too rough with his brother, always being chased at home to get bathed or dressed, the works. The Psychiatric doctor our pediatrician referred us to (and the only one who would even see a 3 year old) diagnosed him in about 20 minutes and asked “How do you feel about meds?”

We went in expecting to be told to try a wide variety of alternatives to meds, but instead came out with 3 prescriptions for stimulants and told to pick whichever one we wanted to try (which was basically asking us “which side effects do you want to risk?”). Gallons of tears later we choose Methylin (nothing but Ritalin in chewable form). While it did help a WHOLE lot with behavior, my son dropped 20% of his body weight in 3 weeks, lost all trace of a personality, and became an emotional train wreck, and five weeks later we quit the Methylin and that Psychiatrist too.

The pediatrician took a keen interest in our son, and called us from his home and asked us to meet him at the office after I told him we could not do Methylin. He set us on a path that started with Focalin (a purer form of Ritalin) and later we added a non-stimulant called Tenex. The Focalin had limited side effects on appetite but did create a lot of motor tics, and the Tenex was added to control the tics and also the impulsivity that very much remained in my son. We bounced around dosing combinations of Focalin and Tenex for 11 months, and had many months of success, but the wheels came off around Thanksgiving and we ended up realizing that the Focalin had stopped working at some point and was also making him very angry and anxious. We stopped the Focalin cold turkey and the improvement in my son was dramatic in terms of his happiness. We still couldn’t control him, and at the urging of our trusted pediatrician (who was very concerned for baby brother) we increased the Tenex just ¼ mg more and finally regained some sense of normalcy with his behavior.

During this time (Thanksgiving-ish) we started seeing a PhD of some sore but not an MD (maybe a Psychologist)? Anyway, we had seen a play therapist once before but quit because the therapist never got to see the side of my son we did at home and we kind of felt like she did not believe us. Fortunately, my son did not care for the new Psychologist, which was the best thing that could have happened since she got to see his true colors. After several visits and many more surveys to us and his school, she believes he is not ODD but instead he his on the Aspergers spectrum as “moderate” and also suffers from some over-stimulation related anxiety yet to be determined. We were just told this last week. I am still having difficulty reconciling how meds DID help at times, and currently the Tenex IS helping right now, but I don’t really have any answers for our family, just a new path to follow to see if we can find the tunnel that actually has the rumored light at the end of it.

I can only offer you the best of luck, goodness knows we need it.

Anyway, I guess I should pay everyone on this thread a copay for the session? It’s usually $25 unless one of you are a specialist, then it’s $40.

[BrerGnat]

TheVBs:

Have you heard of a syndrome called PANS or PANDAS? Sounds a lot like what may have afflicted your daughter. Google it if you've never heard the term.

Treatment centers around the use of SSRI's. Antidepressants, essentially, along with behavioral therapies.

[TheVBs]

Goofy4TheWorld, huge hugs to you and your family! As parents, it always seems that we are so alone in facing these things. I'm so sorry for what you're going through with your son, and I hope you find something that helps.

BrerGnat, we did at one point look into PANDAS. We saw the specialist on it at the University hospital, but she wasn't a fit for the diagnosis because the infection did not go untreated. And not too long after we looked into it, the theory behind PANDAS was dismissed as far as I can tell. No scientific evidence to support it. Thank you for finding and suggesting that though! Not many people are familiar with that. Behavioral therapy is something I'd very much like to look into. We'll just have to wait until DH gets a new job and we have secure coverage again.

We're really going through a power struggle with the teacher consultant at her middle school right now. She is supposed to be our "go to" person and manage DD's workload and IEP requirements, as well as communicate with all the other teachers for us. Well, she's seriously dropped the ball a couple of times and I've tried to address it. I asked to meet with the teachers and they acted as if I had done something wrong. I have never had this experience before and I'll be meeting with the principal, psychologist and the director of special education about it. I simply will not be made out as the bad guy for trying to make sure my daughter gets what she needs. I've had to deal with this teacher consultant's "hurt feelings" after calling her on a misstep. And, I promise you, I was very diplomatic about it, if exasperated. Just when did people reach the point where if they screw up at their jobs, they get to have hurt feelings when they're called on it? :mad: I'll tell you, it's just about all I can take right now.

[stephicakes]

We're really going through a power struggle with the teacher consultant at her middle school right now. She is supposed to be our "go to" person and manage DD's workload and IEP requirements, as well as communicate with all the other teachers for us. Well, she's seriously dropped the ball a couple of times and I've tried to address it. I asked to meet with the teachers and they acted as if I had done something wrong. I have never had this experience before and I'll be meeting with the principal, psychologist and the director of special education about it. I simply will not be made out as the bad guy for trying to make sure my daughter gets what she needs. I've had to deal with this teacher consultant's "hurt feelings" after calling her on a misstep. And, I promise you, I was very diplomatic about it, if exasperated. Just when did people reach the point where if they screw up at their jobs, they get to have hurt feelings when they're called on it? :mad: I'll tell you, it's just about all I can take right now.

I know how singled-out you feel going into meetings when it seems like it is you against the whole school, but you can do it! I too had to sit down with numerous teachers, counselors, psychologists, and vice-principles before I got the results I felt good about. Not to mention letters to the BOE. I put on my suit and was as professional as they were so it was an even playing field. I kept asking myself, “Who would they rather deal with?? A parent who is proactive in doing everything she can for her child… or a parent who does nothing and could care less?”. My Dad was a school psychologist for over 30 years… the stories about parents at the other end of the spectrum were so sad. I know the school appreciates parents who want to be involved in finding solutions even though we may seem pushy at times. You are doing the right thing and that makes you a GREAT parent. We can become such determined “mama bears”, can’t we??! :rant:

Don’t feel bad about being insistent that all areas and alternatives are explored. YOU are the parent - they are not. If they seem hesitant to make changes, ask them, “what will it take to make this happen?”. It may be as simple as a doctor’s note stating the child needs it. If you have a doctor willing to work with you, it can be that simple. I also let the teachers and school staff know how much I appreciate everything they did for us and all the time they spent doing it. Teachers are so under-appreciated and under paid. They have a very tough job and need recognition as well! :high5:

Hang in there peeps! We are not alone!
:)

[BrerGnat]

I've never run into roadblocks with our sons' IEPs, thank goodness. However, if I did, I'm prepared to hire a Special Needs Advocate. They usually charge around $100-150 per hour, but that would be totally worth it for me! Often advocates can get stuff done that the parents cannot. The school systems are notorious for treating parents like they don't have a clue, and try to get away with less.

If this teacher has actually stopped following the IEP, though, what she is doing is against the law. She can be fired for it, so who cares if her feelings are "hurt." She has to do her job!

Just so you know, too, most of the time, Behavioral Therapy is something that isn't covered by insurance, unless your child has a very specific diagnosis, and then the therapy covered might only be a certain type. You might not want to wait on that. We have found a provider who works with our budget and insurance coverage restraints and she offers us discounted sessions since we pay cash for them. Might be worth looking into.

[TheVBs]

I finally had a meeting with the Director of Special Education - it went great! I'm hoping the communication issues will be straightened out now.

As far as the current medication (tenex) goes, it's certainly not helping her focus much. :( Although it does seem to be improving the tics that were caused by the stimulants. We're seeing her doctor next week. Don't know what the next step is at this point.

We did find some great mind games online and thankfully she loves playing them! Hopefully that will help as well. When we get the job situation straightened out, we'll definitely look into some behavioral therapy.

In the meantime, where is MY prescription? :D

[BrerGnat]

In the meantime, where is MY prescription? :D

I've had good results with this: :beer: Sometimes, I need to supplement with some of this: :marg:

[Goofy4TheWorld]

In the meantime, where is MY prescription? :D


I've had good results with this: :beer: Sometimes, I need to supplement with some of this: :marg:

In addition to :beer:, my doctor finally convinced me to add Zoloft.

[TheVBs]

:funny: I have favorable results with :wine: and a steady supply of dark chocolate. However, if my doctor suggests a prescription, I'm definitely willing to consider it.