New adhd diagnosis... please add your story to mine!

[BMW]

We suspect that FIL has adhd, but you know how that just wasn't diagnosed... he fidgets all the time and cannot stop himself from poking or messing with his wife or grandkids or the dogs...

 

My dh is adhd and was dyslexic and had trouble in school... so much like his father! But, he is very respectful of others. He contains it and has a very physical job, so it's all good.

 

My 13yob is extremely adhd... it's always been incredibly obvious. He also has dyslexia and lots of difficulty with school. We tried meds, but he would get very angry at the end of the day and punch the wall, etc. and our insurance at that time wouldn't cover it, so we didn't keep trying to work with meds, we just kept working with son.

 

Now... my 11 yob is diagnosed. He has been such a handful, but his level of hyperactivity paled in comparison to his older brother, so I never thought he was adhd. I should have known... He has been in SO much trouble and multiple types of consequences have not helped at all. We have tried SO many things with him and been at our wits end. The school insisted that we get him a psych eval because he does not show remorse when he gets in trouble and he doesn't respond to consequences and they believe he could have a mental illness. So, we have been involved with a psych and added is a psychiatrist yesterday and have the adhd diagnosis... although there is continued testing and evals planned.

 

We have a prescription for concerta to start tomorrow... I understand to make sure he has a good breakfast... I know to watch his appetite and amount of sleep. The psychiatrist mentioned that the meds wont help with some of the troubles (lying and stealing), but that they should help with his impulsive behavior and annoying habits. My dh, who has been against meds for the boys, is now being VERY supportive! I want so much to hope that our lives around here will improve. Lately, I have not enjoyed being in my own home very much! The boys drive me nutty! And I say that with love, so please don't jump on me!

 

So, if you have been on this road and are ahead of me... Can you please share your stories? Can I hear some tips... or what your experience with meds were? Can I hear what kinds of behaviors changed? And, yeah, you can go ahead and tell me what didn't change...

[BMW]

Please?? I have been dealing with extreme challenging behavior for sooo long I would love to hear some of your stories... Does anyone have a "We've been there and it's gotten better!" story??

[Garga]

My son started concerta just before he turned 8 years old. He never got into serious trouble, but when you talked about your son "not feeling remorse" I remember my son seemed that way, too. It was like he just didn't get it that he had upset someone else. He was flip about things.

 

Once he started the concerta, the appetite did go down. He did not have trouble sleeping. He had soft stools for awhile, but that stopped after a week or two.

 

When he first started the concerta, he would get sad about things as he had never done before. I wondered if I was finally seeing "remorse" that hadn't been there before. It was a little upsetting, because he would randomly start to cry about things. I watched it carefully to be sure he wasn't getting depressed. This lasted for a couple of weeks, and then stabilized. He doesn't act overly sad anymore.

 

I can tell when I've forgotten to give him his pill in the morning, because he'll be acting like a wild thing and when I try to get him to stop, he's back to his, "I don't care!" remorseless attitude with that "look" on his face. Eyebrows sort of up, disdainful, "I don't care!" look.

 

Once the soft stools and the sadness went away, everything else had been great for us. The concerta doesn't seem to drop off abruptly in the evening for us...he is able to maintain his level-headedness until the next morning (even though it's only supposed to last 8 hours.)

 

Of course, other people may have different stories, but we have had success so far. He's been on it since August, so that's about 8 months.

[rafiki]

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[BMW]

Well, I understand dietary options. For quite a while we worked with that, particularly for my son who has aspergers.

 

My dh generally does not like the idea of medications for this.

 

But, our son's life is completely in shambles... This is a boy with a future and he is failing horribly on so many levels. Perhaps we will look at dietary options at another time, but for now, we've got to do something new. He is currently seeing a psychologist and a psychiatrist.

 

I sure hope to hear from some more of you out there!

[kaylk in tx]

we're a vyvanse family here :tongue_smilie:

 

i have noticed my ds being more difficult in the evenings as the medicine wears off. couple things that have helped.... making sure he eats during the day. his appetite is not good but if i remember to have him to eat multiple little snacks during the day, we're much less likely to see the meltdowns. also warm showers or baths really have a soothing effect, even when he goes in screaming "this won't help me calm down".

[Murmer]

I am sorry that I don't have a lot to add. My 3.5 yr old was just diagnosed 4 weeks ago. We have not started meds although they have been highy recommended. We have started SpEd. and I think they have been amazing. I LOVE the OT and the information that she has given us. I can already see some little bits of progress (very little but it is there, you know a fit that use to go an hour is down to 55 mins type stuff). I would really recommend looking into OT. Good luck!

[LittleIzumi]

Dh is on Adderall plus seeing a psychologist. It's AWESOME. It does cut his appetite though.

[TravelingChris]

My two older kids have ADHD. I will talk about my middle who has the severe ADHD. All you have to do is look at her test scores over the years to see how much ADHD medication has helped her. Yes, she was medicated from when she was 3. THe levels of the medication at that time and through elementary school helped her learn but never really helped her enough. By the time she was a middle schooler, we were trying to increase. Finally, when she was almost a tenth grader, the doctor suggested a medication that made all the difference to her- Vyvanse 70. Now I am not saying that all kids need Vyvanse or such a high dose- just that she did. And in fact, last year, when she was in 11th grade, her doctor added 10 mg. of ritalin in the later afternoon. SHe has thrived on this. Accomplishments that I never would have expected from her have happened= things like scoring very well on ACT (since she has such severe ADHD she tends to forget lots of things like how to do long division), getting into regional tournament in two different events (multi-state), singing in a semi-professional choir, etc, etc. She is so talented and the medications just allow her to be able to focus enough to show it. THe negatives- I am not sure that there have been any. Her weight is low but really no lower than mine was at the same age. Her height is maybe about an inch or two lower than it would have been but that is so hard to judge. Her sister, who never took such medications, looks like she may end up the same height. They are both shorter than me and I am just a bit taller than average. I think the height is a result of my underlying illnesses when I was pregnant with them. That is, I have autoimmune diseases that I think affected them more than any medications.

[Renee in NC]

Please?? I have been dealing with extreme challenging behavior for sooo long I would love to hear some of your stories... Does anyone have a "We've been there and it's gotten better!" story??

 

I do. It has gotten MUCH better.

 

Last September I was ready for him to be hospitalized because things had gotten out of control. At 9yo, 5 feet tall, and very, very strong, he was becoming a danger to others. The dr. put him on Vyvanse. He couldn't read much of anything, couldn't do math, and couldn't learn (unless it was from a movie/documentary.)

 

His rages, which were 4 times a day, then, after 3 months of OT (including Interactive Metronome) were down to 4 times a week are now greatly reduced - we haven't had 4 since September! He can read some, too!

 

The meds should last all day (Vyvanse is good for 13 hours.) If they are wearing off too fast, get a higher dose. The lying and stealing *may* lessen if it is related to impulsiveness. Even with meds, behavioral therapy will still be a must!

[Renee in NC]

My two older kids have ADHD. I will talk about my middle who has the severe ADHD. All you have to do is look at her test scores over the years to see how much ADHD medication has helped her. Yes, she was medicated from when she was 3. THe levels of the medication at that time and through elementary school helped her learn but never really helped her enough. By the time she was a middle schooler, we were trying to increase. Finally, when she was almost a tenth grader, the doctor suggested a medication that made all the difference to her- Vyvanse 70. Now I am not saying that all kids need Vyvanse or such a high dose- just that she did. And in fact, last year, when she was in 11th grade, her doctor added 10 mg. of ritalin in the later afternoon. SHe has thrived on this. Accomplishments that I never would have expected from her have happened= things like scoring very well on ACT (since she has such severe ADHD she tends to forget lots of things like how to do long division), getting into regional tournament in two different events (multi-state), singing in a semi-professional choir, etc, etc. She is so talented and the medications just allow her to be able to focus enough to show it. THe negatives- I am not sure that there have been any. Her weight is low but really no lower than mine was at the same age. Her height is maybe about an inch or two lower than it would have been but that is so hard to judge. Her sister, who never took such medications, looks like she may end up the same height. They are both shorter than me and I am just a bit taller than average. I think the height is a result of my underlying illnesses when I was pregnant with them. That is, I have autoimmune diseases that I think affected them more than any medications.

 

Woohoo! I am happy for your daughter. My 13yo just started Vyvanse for ADD (no "H") and is also dyslexic. The first day he was on it he got an 80 on a spelling test at school. He has *never* gotten an 80 on a spelling test! He's a mechanical genius and would make a great engineer, but his academic problems were going to prevent that. You give me some hope, here.:D

 

As for height, my 9yo is 5 feet and the 13yo is 5'4" (no puberty yet), so I think wel'll be okay either way. I worry most about the 10yo because he can't take the "summers off" like my 13yo could.

[ThatCyndiGirl]

I would urge you to see him and speak of him as SEPARATE from the diagnosis of ADD.

 

I HAVE ADD. I am NOT ADD, kwim? IMO, when a kid hears over and over "he's ADD" they start to internalize it and see themselves as the diagnosis instead of a person WITH the diagnosis.

 

I was diagnosed 3 years ago and take Adderall and it helps a LOT. I am always frustrated when people are so anti-medication for this. Not many people would say, "I'm anti-diabetic drugs", but they are quick to discount drugs for ADD and other mental illnesses. :confused:

[Renee in NC]

I have an 7 y/o ADHD'er and an almost 11 year old ADD'er, both also have dyslexia. We don't medicate. Diet has helped tremendously, we avoid egg, wheat, dairy, soy, treenuts, peanut, fish, and shellfish. They eat minimal prepackaged foods. Other than that, it's just encouraging things to go right and understanding their needs. My middle ds used to have rages so bad, I would have to bear hug him with my arms and legs until he snapped out of it so he wouldn't hurt himself. There's a recent discipline post on the SN's board where I shared more of what we do.

 

Does he not rage anymore? We medicated when the 9yo's rage got so bad that he was a danger to others (and himself, but mostly to others) and he was too big and too strong for me to restrain anymore. Diet *does* affect him - he has always had gluten and dairy issues (so do I, for that matter.) We're going to try dairy and gluten free after we move. What you shared on the SN's board is also what I have to do with my 4yo especially.

 

Our genetic map of ADHD is extreme - BOTH of my parents have it, I have it, and dh at least showed tendencies when he was younger (and definitely has executive function issues overall.) He was adopted as a newborn, so we don't have family medical history, but I bet you there is some ADD there, too.;) Out of my 7dc, 3 are officially diagnosed and 1 will most likely be in the future (4yo dd.) My 8yo is *extremely* impulsive and lacks a lot of self-control, but this may just be related to his extremely low working memory. So far, only the 6yo and 2yo have escaped.;)

[Renee in NC]

I would urge you to see him and speak of him as SEPARATE from the diagnosis of ADD.

 

I HAVE ADD. I am NOT ADD, kwim? IMO, when a kid hears over and over "he's ADD" they start to internalize it and see themselves as the diagnosis instead of a person WITH the diagnosis.

 

I was diagnosed 3 years ago and take Adderall and it helps a LOT. I am always frustrated when people are so anti-medication for this. Not many people would say, "I'm anti-diabetic drugs", but they are quick to discount drugs for ADD and other mental illnesses. :confused:

 

This is kind of like the adoption thread - semantics bother some people and not others. I don't talk about it IRL much, so ds isn't hearing that "he is ADD" or "has ADD" at all. For me, I don't care which way you say it, because words/labels just don't affect me that much.

 

I think being somewhat "anti-meds" for children is a good thing. The meds *do* have side effects. Growth is just the most obvious one, but I am not a fan of messing with young children's brain chemistry unless absolutely necessary. My 17yo has never been medicated, my 13yo *asked* to be medicated (and we decided to try it), and my 10yo can't be without it.

 

Everyone has to weigh pros and cons. Diabetics have to have insulin or they will die - obviously the benefits outweight the risks. It isn't always that clear with mental illnesses, especially when the criteria for diagnosis is so subjective.

[ondreeuh]

My middle child is very very ADHD. He takes Concerta has has NO problems. He eats breakfast, lunch, and a snack, but isn't hungry for dinner until more like 8 pm (so we save his plate). He is growing well. His meds make a VERY dramatic difference in his behavior. He is thoughtful, tries to please, and is very cooperative. When his meds wear off he is much harder to work - he gets frustrated SO easily, does annoying stuff just because, is shrill, flails around ... ugh. I'm waiting for the day they have a 24-hour med ;).

 

Concerta is our pediatrician's med of choice for ADHD. He sees the best management and fewest side effects. We see him every 3 months for a quick checkup to weigh/measure and check for side effects.

[BMW]

Thank you, Renee! We've been battling with this boy for SO long and trying to get to the bottom of issues. Some issues were plain and simple grief and anger over losing his mom a few years... Scholastic issues and behavior problems have been highly adhd related (we really didn't realize this since his hyperactivity looks so different than his brother's). It's been very difficult to have the teachers and school fed up with him... to have relatives turn their backs on him (yep, even though he is young!)... to see him fail... to watch him "get told" over and over and not "learn". We've felt hopeless for a while. We do feel hopeful right now... And we aren't even finished with the evaluations. His psychologist wants to explore possible pdd-nos because of his inability to interract socially with his peers. He just doesn't learn that!

 

Anyway, thank you very much for "talking" with me, everyone!

[LittleIzumi]

I would urge you to see him and speak of him as SEPARATE from the diagnosis of ADD.

 

I HAVE ADD. I am NOT ADD, kwim? IMO, when a kid hears over and over "he's ADD" they start to internalize it and see themselves as the diagnosis instead of a person WITH the diagnosis.

 

I was diagnosed 3 years ago and take Adderall and it helps a LOT. I am always frustrated when people are so anti-medication for this. Not many people would say, "I'm anti-diabetic drugs", but they are quick to discount drugs for ADD and other mental illnesses. :confused:

 

Dh is also very anti-drug for his ADD (well, ADHD-Inattentive :tongue_smilie:), was all about mind over matter, and he talked to his brother who's on Adderall & was in behavior therapy for over a year before he tried it. The Adderall made such a HUGE difference--he went from a repeat college dropout in the first quarter to his current second straight 4.0 semester. He's getting his degree in Psychology because it's made such a difference in his life. However, he is also very hesitant to think about medication for dd5, who shows many signs of being ADD herself. We're going to wait until she *needs* it but it's interesting that even with how well it worked for him, he's very hesitant about medicating anyone else. He worries about her being "labeled" or labeling herself, or wondering what life would be like without the meds, or long-term side effects, etc.

[rafiki]

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[BMW]

Thanks, One 1 Michelle! I got a chuckle about how you phrased us being able to come here and be safe.... So many times I come and blurt something out and it's not like I am going around my house blurting it out!:lol:

 

My son is in so many situations right now that he knows he is having serious problems... he is right beside us with the psychologist and psychiatrist. So, I don't think we'll be able to keep a "label" from him. He is VERY smart and reads between the lines and figures out things so quickly. Our goal is to keep him from using this as a crutch. I think our son feels a bit of hope, too. He is eager to try the meds. He doesn't WANT to be in trouble all the time.

 

Thanks again, everyone! My day is much better having input from each of you!

[snipsnsnailsx5]

Your story sounds similar to ours for our 9 yr old. I'll write more later. But we just got RX'ed Adderol (Sp?) and are starting it tomorrow. :)

[LG Gone Wild]

We've struggled a lot. He's been on Concerta. It has helped tone down in annoying behaviour but not completely turned it off. Lying and stealing is still a factor. I would like to go higher but it decreases his appetite too much and he gets headaches on higher doses. The medicine wears off by evening.

[ange]

I was diagnosed 3 years ago and take Adderall and it helps a LOT. I am always frustrated when people are so anti-medication for this. Not many people would say, "I'm anti-diabetic drugs", but they are quick to discount drugs for ADD and other mental illnesses. :confused:

 

:iagree:

[ange]

To share my story - my 7 yo has ADHD ("officially diagnosed"). He also has sensory issues and has been a "wild child" since he could move. We finally went over to meds this past December. He could not blend sounds the day before he took them, the day after he started he could blend and started sounding out words. It was the first time I think I ever saw him hold his head still long enough to absord what was on the paper. Having said that, we have switched medications 3 times due to side effects. Specifically we started with Concerta. As we increased the dose he began to have mood swings. He would suddenly become sad and depressed over things that seemed insignificant. (understand his normal personality is very happy). He would then swing to violent rages where he would throw things, scream, kick, break stuff, you name it. It wasn't unitl we stopped the meds for a week while he had the flu that we realized what was going on. We then switched to Vyvanse and within 2 days the extreme saddness came back. We are now trying a non-stimulant called Intuniv. It does not work as well as stimulant for impulsivity and hyperactivity. It does help some with focus and attention. We may go back to a stimulant, either a different one or different dose. From what I understand, working out the meds is trial and error and as their bodies and body chemistry changes, so must the meds.

 

As for the topic of meds vs. other options. I believe that everyone must make that decision based on the child/ individual and what is best for them. You can't make generalizations. I also believe that treating a disorder like ADHD or a mental illness is just as serious as treating a physical illness such as diabetes. In many cases it is a life or death situation, as individuals with undiagnosed and untreated ADD/ADHD have a greater chance of self-medicating themselves with illegal drugs and alcohol. Those with ADD/ADHD are also 4-6 times more likely to commit suicide. I mention this just to educate, because it seems there is a stigma attached to disorders of the brain, and also there seems to be a misconception that it is not a physiologically based disorder and that medications are optional or just a last resort. Medications for ADD/ADHD are entirely appropriate and in many cases necessary for life. Like any medication, we must be vigilant to understand the risks, but there is no reason to demonize meds given the crucial role it plays in many peoples lives with ADD/ADHD and many other disorders of the brain.

 

I would appreciate hearing others experiences with the mood swings while on stimulants. I am curious if it is normal for kids to have them and about how some people mentioned the mood swings stopped after a certian period of time. How long do you "put up" with side effect before switching to another med? THanks so much for sharing.

[BMW]

Thanks for sharing, Ange. My son's older brother also has significant adhd and has been MUCH more hyper than he has been. We tried medication with him and towards the end of the day he got very hostile... angry... punching walls... We had no medical insurance coverage for adhd and meds at that time, so we were not willing to keep doing a trial and error with Dr. appt.s and medications, so we just took him off and continued to work with him.

 

My son who is now taking concerta is doing great... he is on the lowest dose (we tried going up a dose to see how it would work, but he couldn't get to sleep...). So far he has been moody one day in 3 weeks...

 

Thanks again for sharing. Sometimes it feels like I am the only one with challenging kids who have disorders (I KNOW I am not and that there are many here... but some days it feels quite lonely... kwim?)

[Natalieclare]

Thanks for sharing, Ange. My son's older brother also has significant adhd and has been MUCH more hyper than he has been. We tried medication with him and towards the end of the day he got very hostile... angry... punching walls... QUOTE]

 

:grouphug::grouphug:

I have a child who is on medication for adhd, and WOW, it has made such a difference in his life. We were very reluctant to start it, put it off for years and years, in fact. But as he got older, he began to see for himself how limited he was in what he could do because he just. couldn't. focus. It started to seem like a crime to withhold the possibility of focusing from him; so we tried the medication.

 

The benefits of medication have been: an improvement in all relationships across the board (he now has the ability to stop himself from going beyond the place of extremely annoying-mostly!); growth in academics; a decrease in the number of injuries (he used to run everywhere with his back bent and head pointed down...and bonk into things:tongue_smilie:); an improvement in his ability to develop a project. Those are the big things; there are also little things such as he is much quieter and can now sit still.

 

He has had to try 3 or 4 different medications. He seems to be most plagued by side effects pertaining to his emotions. He has experienced outbursts of anger, weepiness, irritibility. It's complicated though, since it's hard to separate some of the side effects from the medicines from the side effects of being a young teen, ya know? He is now at a good place, much more evened out than he was on his last medication.