To all Parents of kids with ADHD

[Brightsy]

I know there are plenty of adults living w/ ADHD/ADD on this board. I'm one of them, i think. When I was 5 1/2 (in Kinderdarden) I was diagnosed w/ dyslexia and hyperactivity. I was put on Ritalin and took it until I hit puberty around my 12th B-day.
I'm not on any meds now, and I haven't ever been revaluated since I was taken off the meds. It's been... uhm (Math-not my strong suit...thinking now...) 24 years since then. I haven't noticed any long-term effects, but then I've never had a brain scan of any kind that i can remember. None of the dr.s I've seen over the years have expressed any concerns. My heart and such is fine.
Matter of fact, the only people who've ever shown any real concern over my having been on Ritalin were the Scientologists... (Waaaaayyy back in my Army days some pals and I got a little...a lot...drunk (not proud of it, just stating the facts) and wandered into a Scientology place... barely made it out alive... LOL! Further tanget: Over the years since that experience I've been married twice and moved around MANY times and yet I still get mail from the Scientologists...if I ever go missing I've told Tony to contact Them, if they can find me wherever I go after all these years, moves and name changes they can find anyone!)
Ok, it's early-ish, and my brain is addled! Bye!

Sara

 

[wvdislover]

I really weighed out the options when deciding to put my DD9 on her various meds. The first one was really a no-brainer, when she was 5. I'd been trying to get a doctor to put her on Adderall since she was 3, but no one wanted to put her on anything until she started kindergarten (looking back, I wish I'd fought harder. She's still fighting developmental delays and educational delays b/c of not being able to focus on anything long enough to learn much). When we finally put her on meds, the Adderall made her sick, so we changed to Concerta. What a difference!!! She could sit, color, pay attention better, etc. She had a lot of problems with anger and anxiety, though, so we changed her to Focalin XR and added Prozac. The Prozac was something I had fought for a long time, as I was worried about the reports of heart trouble and suicidal thoughts. But after really looking at it and praying about it, I decided the risks were worth it. If I didn't do it, I was afraid that my DD, who already had really low self-esteem at 8 ("no one likes me, everyone in my class calls me weird, I'm stupid, you don't love me as much as you like my baby sister", crying almost every day), was going to become suicidal if we DIDN'T put her on something. It's really made a big difference--it was definitely a good decision. We have also now added Strattera in the afternoons to help with impulsivity. This, too has made a big difference. I'm so glad I have a support system of friends, doctors, teachers, and therapists who are generally on the same page I am. Life is not perfect, but it is a whole lot better than it could have been. Good luck everyone!

 

[wdwfamilyinIL]

I would also like to join the minority on this thread. As a child I was hyper with a very short attention span, teachers didn't want to deal with it then or do they want to deal with it now. Medications for alot of people seem to be a quick and easy fix, I am well aware that there are children who need this and benefit greatly from it, but there are just as many who don't. As a parent it amazes me at how fast teachers are to suggest the parents start medicating their children. I have three sons, all of whom are identical to me as a child. It isn't easy dealing with them at all, but as a parent I can't even think about giving them a medication that can have deadly side effects. There have been alot of studies that show a huge increase in sudicide in teenagers that have taken these medications. If your child has benefits from this, I am so happy for you, but knowing that this could happen scares me more than dealing with a hyperactive child. I learned how to function, and I too hope that my children will learn. I really didn't think as much about this until my last parent-teacher talk when the teacher couldn't believe that I was able to have a successful life without the use of medication. Again I am not trying to come down on anyone, if this works for you great, but in my own opinion it seems like there is just a lot of push to use meds.
On a side note, I read that someone commented that you wouldn't hesitate to medicate a diabetic child, so why would you not medicate this.....While they may both be imbalances within the body, they are still two different things. Its almost impossible to compare conditions, everyone reacts to them in different ways.

 

[PrincessMom2002]

Hi, I'm Natalie and I too have a son with ADD. He is almost 7 and in the first grade. I won't go through our whole story, I'll just say that his currently taking concerta. I know medication isn't for everyone and I can't tell you how many nights I prayed that medicine wouldn't be for my son either. I can only tell you that it has completely changed my son's ability to be successful in school.

I have a question for some of the other parents here. My son has, always, since birth, been a terrible sleeper. It absolutely astonishes me how little sleep he gets. His sleep patterns remain consistent on or off his meds. An example might be... up at six AM, day spent riding bikes, swimming 3 hrs in a pool, jumping on the trampoline, etc... bed at 9:30, and bouncing off the walls by 6 the next morning. Anyone else have a ADD kid that can't seem to get the sleep he needs?

Hi Natalie and everyone else . I just found this thread. I've been posting my ADD experiences with my DS7 on the CB. Anyway, yes, my DS has always been active, little sleep needed. Even as a newborn he slept maybe 12 out of 24 hours. When I was pregnant with him he was active from the time I woke up (6am) until I went to bed (10pm). He never ever woke me up in the middle of the night with his movements, and I am a light sleeper.

We saw this diagnosis coming for many years. Just this Sept. the ball really got rolling with the school and now his ped. Last Saturday we tried Concerta but he couldn't swallow the pill. We tried many different techniques, but he has such a strong gag reflex anyway. Today is his first day on Daytrana 10mg. I keep asking him if he feels any different, if he feels OK. He says he doesn't notice a difference. I had a heck of a time getting the backing off the patch so I've been thinking that maybe it's not working right. But as I type this, he and DD are watching a Christmas show and he is actually SITTING on the couch watching it! Normally he's up, acting out the show, bouncing around. So maybe it is! This whole experience has been difficult as you all can relate. Last night and this morning I just prayed that this medication would help and not hurt. It's been an excrutiating decision, but more excrutiating has been watching his grades fall, him lose his interest in school, struggle to have friendships, and slowly go from the happy-go-lucky kid we've always known to this stressed out kid because he feels stupid. Along with the meds, we are meeting with the intervention team at his school this coming Wed. I do not plan to tell them we are trying meds. At least not until we are certain they are right for him and we see improvements. I'm not sure what all will come of this meeting, what they'll recommend, what services will be available, but I hope they put him on an IEP and he will be able to get tutoring.

Hugs to all going through this. I don't have any friends with kids with similar issues so I have nobody to talk to who can personally relate. It's hard sometimes.

 

[LOLA2]

DS 5 was diagnosed about a year ago. He was always touching everything,
could not enjoy one activity for very long, coudn't sit still, would get frustrated very easliy. In school his favorite thing to do was act like a tornado and mess everything up. He peed on a child on the playground because he got mad at something. He would tell my grandparents he didn't like them then tell me later that they are ugly beacuse they are old. Would say other people were fat within hearing distance ( I am no junior petite myself) He is just soooo impulsive. He just doesn't think before he says or does something. We signed him up for soccer and he would just wander off and start kicking all the balls onto the soccer field, signed up for t-ball and he would lay down in middle of field. But besides these things people are just enchanted with him, he is so loveable, funny and hardly ever get mad, is not shy. When we told the doctor all the things he was doing she had us fill out forms and then said it seems he has ADHD. Adderall XR kept him up, so now he is on Focalin. 10mg. I am not sure if this is the right amount or not. Some days he has great days big thumbs up from his teachers. Other days big thumbs down not listening and being defiant still impulsive on his bad days. I am wondering if his dosage needs to be increased, we tried it once for one day and he was extremely emotional. I don't know if it was from medication or not but we did not try again, maybe we should.

He is very into music will sit for hours listening to his animusic cd loves all musical instruments, loves listening to music. Either this is just a big intrest for him or anyone think maybe it could be anything else.

Also he does this thiing sometimes where he covers his ears while he is talking. So weird. He also talks over people, so if he is talking then daughter starts talking he will talk over her and get louder and louder until he starts screaming. Does not happen oftten, only when my daughter butts in.

I think sometimes maybe he has something else also. I hear about OCD and Asbergers. What exactly are these? Sometimes I just think there is something more. But it is so weird, sometimes on certain days we think
maybe he doesn't even have ADHD. It all depends on the day.

So weird.

 

[Mish]

Abby, My son started Daytrana just this year. I also had trouble with the backing, call the company and they will send you a coupon for a free prescription. Also my DS 8 started on 10 mg and i didnt notice anything. We went up to the 15 mg and he is doing much better. The only problem were having is a bad rash from the patch.

 

[PrincessMom2002]

Abby, My son started Daytrana just this year. I also had trouble with the backing, call the company and they will send you a coupon for a free prescription. Also my DS 8 started on 10 mg and i didnt notice anything. We went up to the 15 mg and he is doing much better. The only problem were having is a bad rash from the patch.

Thanks Mish! Does it just depend on the box of patches you get, whether or not the backing is going to be a PIA? And also, I thought the patches were supposed to be fairly easy to remove? DS was practically in tears. It did leave a red mark just at the site but I put vaseline on it after we cleaned off any residue and by bedtime the mark was gone. Speaking of bedtime, he couldn't fall asleep until almost midnight and he was up by 6:15 this morning. He had the patch on from 8:45am to 4:30pm yesterday. His ped. only wants him to have it on no more than 8 hours. And about 2 hours after we took it off, he was non-stop talking for about 30 minutes. My DH described it as a dam that had just been opened. It was actually quite funny but I sure hope that doesn't get worse.

 

[Brightsy]

It sounds to me like your DS either needs a higher dose or a new med. My 7yr. DS was diagnosed 2 1/2 yrs. ago w/ ADHD (we knew for several years that the dx was coming...) he's currently on 25mg of Focalin XR. It's been the best of the meds we've tried so far. Adderal XR made him hyper emotional and killed his appetite, Concerta had a much milder effect but still wasn't ideal. The Focalin seems to be working well. His teachers love him and I haven't gotten any negative comments from them.
As to you DS having something else it's possible. However, sensory integration issues aren't uncommon in ADHD people. All of us have little sensory quirks, but ADHD kids can sometimes develop stronger ones. my DS, for example, has several sensory issues, like certain noises he can't abide (like when his 5yr. HFA brother starts a tantrum) and he HATES sticky stuff on his hands. He doesn't have Sensory Integration Disorder but it's a near miss for him, really.
Still, talk w/ your sons Dr., and maybe get an Occupational Therapy evaluation, it could answer a lot of questions.

Sara

DS 5 was diagnosed about a year ago. He was always touching everything,
could not enjoy one activity for very long, coudn't sit still, would get frustrated very easliy. In school his favorite thing to do was act like a tornado and mess everything up. He peed on a child on the playground because he got mad at something. He would tell my grandparents he didn't like them then tell me later that they are ugly beacuse they are old. Would say other people were fat within hearing distance ( I am no junior petite myself) He is just soooo impulsive. He just doesn't think before he says or does something. We signed him up for soccer and he would just wander off and start kicking all the balls onto the soccer field, signed up for t-ball and he would lay down in middle of field. But besides these things people are just enchanted with him, he is so loveable, funny and hardly ever get mad, is not shy. When we told the doctor all the things he was doing she had us fill out forms and then said it seems he has ADHD. Adderall XR kept him up, so now he is on Focalin. 10mg. I am not sure if this is the right amount or not. Some days he has great days big thumbs up from his teachers. Other days big thumbs down not listening and being defiant still impulsive on his bad days. I am wondering if his dosage needs to be increased, we tried it once for one day and he was extremely emotional. I don't know if it was from medication or not but we did not try again, maybe we should.

He is very into music will sit for hours listening to his animusic cd loves all musical instruments, loves listening to music. Either this is just a big intrest for him or anyone think maybe it could be anything else.

Also he does this thiing sometimes where he covers his ears while he is talking. So weird. He also talks over people, so if he is talking then daughter starts talking he will talk over her and get louder and louder until he starts screaming. Does not happen oftten, only when my daughter butts in.

I think sometimes maybe he has something else also. I hear about OCD and Asbergers. What exactly are these? Sometimes I just think there is something more. But it is so weird, sometimes on certain days we think
maybe he doesn't even have ADHD. It all depends on the day.

So weird.

 

[Mish]

Abby, The same thing happens with Jonathan about not being able to sleep, Jon wears his patch till 4 the doctor told me to take it off earlier. The doctor told me to buy Melatonin that would help him sleep but since i not able to find it in liquid and he cant swallow pills we cant use it. He is very hyper about an hour after the patch comes off. When i am afraid the patch isnt sticking correctly then i put a bandaid over the ends and that seems to help. I am noticing a few tic which they said is a side affefct and i am going to have to call the doctor. I hope they will pass i dont want to have to take him the medicine it does really help. Any other question please ask.

 

[jcat2312]

My daughter was recently diagnosed with ADD. We expected this, as we have been dealing with her inattentiveness for over a year now. Just today, she has started taking Adderall XR. I am really hoping that this medicine helps and doesn't have too many side effects on her, as she is already stressed out right now. The worse thing is that Chloe is starting the medication with a substitute teacher (her regular teacher won't be back for a month)!

Anyway, I am glad there is a forum here for ADD kids/adults. One of the first things Chloe asked for after getting the diagnosed was for another trip to WDW!! Of course, we will have to oblige on this one....

Hugs to everyone here!

 

[Forevryoung]

Abby, The same thing happens with Jonathan about not being able to sleep, Jon wears his patch till 4 the doctor told me to take it off earlier. The doctor told me to buy Melatonin that would help him sleep but since i not able to find it in liquid and he cant swallow pills we cant use it. He is very hyper about an hour after the patch comes off. When i am afraid the patch isnt sticking correctly then i put a bandaid over the ends and that seems to help. I am noticing a few tic which they said is a side affefct and i am going to have to call the doctor. I hope they will pass i dont want to have to take him the medicine it does really help. Any other question please ask.

They have sublingual melatonin in a range of flavors- try looking for that instead

why wouldn't the patch stick correctly? I use a transdermal patch (Emsam, it's an amazing new MAOI) that stays on for 24 hours and I shower and swim and everything with it and it sticks fine... Once in awhile (talking once a month if that) I have a problem with irritation if I put it in a "bad spot"

 

[Miss Jessr!ca]

im 16, a junior in HS and i HAVE to take adderall.
if i dont i fall asleep, and cant focus.
i like it because it does help.

it really stinks though because your body will start to get used to it and then you have to take more and more.
like me..im at 60mg (which is the max) and im getting it uped soon, so ill have to start taking multiple pills

when i dont take it..its a whole nother story
im up all night
i get angry
i cant focus no matter how hard i try.

so its really a win lose situation.
it helps..but its bad for you

 

[JoiseyMom]

Well, we are about to try a third drug for DS5. The Daytrana did nothing, we have had him on Strattera for over a month (we upped the doage 2 weeks ago), and still nothing. We just got a prescription for Focalin. The dr. wants him to take one in the morning, and keep 1 dose of Strattera in the afternoon. I hope this works.

 

[Florida_Mom]

Hi all...

I want to resurrect this thread because DS9 is going to start Daytrana tomorrow. After several years of OT for his sensory integration and tutoring for his dyslexia, we are now moving forward trying to help him with his ADD. The lack of focus wasn't as bad before, but in the last two months it has just increased dramatically -- DH and I have noticed it, DS has noticed it, his teachers have noticed it. So, I hope you all continue to post on this topic. Thank you!

 

[SueM in MN]

This is kind of an old thread that has been brought back to the top.
It looks like excellent information for our disABILITIES Community Board, so I am moving it there.

 

[BeckyScott]

We just started DS9 on Adderall 3 months ago- and he is on 15 mg so not quite "full-strength".

We were really really hesitant, after witnessing one nephew who they have completely overdosed on Strattera (aka Zombie Boy), and our youngest DS w/ autism, who was on Concerta for a while and a very bad experience.

Anyway, what made me feel better, was our doctor told me- Look at it as a temporary thing. Not permanent. As DS gets older and matures, he will learn life skills/ coping skills for how to deal with the ADHD. He will understand more of what's going on with his body. The Adderall is there, for now, to help him.

My brother is ADHD, first diagnosed when he was in about 4th grade. This was "back in the day" when they called 'em Hyperactive and put 'em on Ritalin. The Ritalin made him fall asleep at school, and my family attempted to Feingold him with no luck. So. He just "dealt". Looking back, he had a LOT of trouble in school, eventually dropped out, but there weren't the support services available that there are now. As he got older, he did learn how to deal with it. Got a good job where moving around was okay. Figured out how to focus when he needed to. And has been quite successful as an adult. So I can understand our dr's point, and that made me feel alot better.

 

[PrincessMom2002]

Hi all...

I want to resurrect this thread because DS9 is going to start Daytrana tomorrow. After several years of OT for his sensory integration and tutoring for his dyslexia, we are now moving forward trying to help him with his ADD. The lack of focus wasn't as bad before, but in the last two months it has just increased dramatically -- DH and I have noticed it, DS has noticed it, his teachers have noticed it. So, I hope you all continue to post on this topic. Thank you!

Florida Mom-Good luck with the Daytrana. As I posted earlier in the thread, we started DS7 on the 10mg patch on 12/9/06. He was on that dosage for a month and overall the changes we saw were not very noticeable. His school work did not improve. So his ped. upped his dosage to 20mg in Jan. The higher dosage caused major anxiety and depressive issues for DS. He's been off now for almost a month. He had the full-blown eval in Jan. with the school system to see if he qualified for special services. He does and just started his IEP two weeks ago. The anxiety/depression really came to light during the course of the evaluation. I was not aware how bad it was until I was on vacation in early Feb. so spending alot of time with DS. He had almost constant headaches and stomach aches as well. He was NOT himself, personality-wise. We decided the side effects were overshadowing any benefit he got. We did see an improvement with his school work but I wanted my happy kid back!! So for the time being he is back to med-free. But he's his old smiley self and he's actually doing OK in school, better than before the meds. I think the IEP helps alot. I hoped the patch would work for him because he can't swallow pills yet. (we unsuccessfully tried Concerta) Even though the patch is not the answer for my DS, I would highly recommend it. Overall we found it very easy to apply and take off. We used tweezers to get the backing off. It did leave a bright red mark but we would slather the area in vaseline, so it didn't bother him. Let us know how it works out.

 

[letsgodisney]

This is all just SO confusing for me! I really don't know which avenue to take.

We have been taking him to Schneider's Children's Hospital for 2 years. They have a BEHAVIORAL AND DEVELOPMENTAL DIVISION that is supposedly the best in New York. As of our last appointment, the psychologist said she thought meds would be a good idea. I said "No" at that point, because I at least wanted to wait until he started Kindergarten. I wanted to see how he would do in school.

He is in an INCLUSION class, but does not have an "AID" specifically for him. I think I need to request another CSE meeting and request a bunch of stuff...we had our last meeting in June. I want them to approve an AID for him, if they feel that will help. Right now, there is a full time teacher and a full time assistant in the class and the assistant is basically spending ALL of her time with my son. He needs CONSTANT supervision. He also spends 20-25 minutes in the Resource Room with two other kids. He does seem to do better with fewer children around (his class has 22 kids and I think it is WAY too much stimulation for him!) In addition to the AID I would like to get, I would also like them to recommend and supply BEHAVIORAL therapy, possibly in a group setting. I just started taking him to a Social Worker/Psychologist (or Psychotherapist...not sure of her exact title) but it's one on one and she doesn't only deal with kids, she deals with all people, all issues. But she has had her share of ADHD kids. I would ALSO love to get some Behavioral Therapy for MYSELF! I am at wits end here, and I feel like I am just yelling all the time and it's not helping ANYONE.

*sigh* I am just so lost. Thanks for all the replies, I do appreciate it.

Just had to drop you a note, We too have been going to Schneiders Childrens for the better part of 4 years. we now see a Neurologist. My DS has ADHD, OCD and was generally diagnosed with PDDNOS which of course means nothing. We have tried every kind of med and I am sick about the whole thing. One works then it stops then anxieity increases then we up that med and so on and so on. NOw we are about to stop it all to see how that goes, I have read this board and am interested in Tenex or possible Focalin I can't believe we have not tried them. My son is a sweet wonderful boy who has a very high anxiety level which contributes to his not paying attention. SO I understand just how you feel Thanks and best of luck to you, PM me if i CAN HELP......

 

[DisneyDiva13]

My son is also ADHD. We tried Adderall XR which was AWFUL for him (he went into a rage when he was coming "down" from it). Doc switched him to Focalin XR and it's been really good. He's himself...just calmer and more focused. His grades have improved and his reading skills are SO much better than before the meds. It was SUCH a hard decision for us to put him on meds. We tried so many other things first but they just did not work. So far, Focalin XR has been a godsend. He goes for a checkup soon and I think he may need a slightly higer dose (it seems to be wearing off sooner than it should), but other than that things are great. Good luck!

 

[DisneyDiva13]

My DS(8) was diagnosed at 5 with ADHD, He is unable to swallow pills so we could not medicate him. This year we started using the Patch it is called Datrana. All I can say it what a difference. He is doing so much better in school no more fighting to do homework. Weekends are not as stressful.

FYI...Adderall XR and Focalin XR (and maybe a few others) capsules can be opened and the contents sprinkled on yogurt or pudding. That way you don't have to worry about the whole pill swallowing thing. In case you are ever looking for an alternative to the patch.