Past experiences, help or no help, etc.

Thanks!

Whatever you do, make sure it's not given with Prozac! (a very dangerous combination, we found out the hard way!) Angela took Aderall for a couple of months. Unfortunately it's one of the drugs that don't do so well for kids with Ds. (That is, according to Dr. Kapone) What we DID see good results with was Guanfacine. And now a combination of Guanfacine (for the adhd related issues) and Risperdal (for the aggression and mood swings)

My Sophie (12 years old) was having such a hard time in school. She couldn't focus, was getting D's and F's (beginning of last school year) and was miserable. I took her to the doctor and they diagnosed ADD and she started on Adderall 10 mg a day. I have never in my life seen such a dramatic change in one little girl. She takes it every school day before she gets on the bus and she says she can feel it start working because "I become boring", ha ha ha. Then on the ride home from school she can feel it leave because "I feel fun again". At the end of the year last year she had all A's, B's and 1 C and made the honor roll. After she started taking it she would come home, go behind the house by a tree and do her homework without me even asking her to do so. Believe me it was amazing.

Now for a funny. I'm convinced that I have ADD as well, so one day I decided to take one of her pills to see how it helped me. OH MY GOD!!!! I have since been told by my doctor who scolded the heck out of me that ADULTS should not take this drug because it works completely differently on them. I thought I was on speed. I did not eat one thing from the time I took that pill until the time it wore off, which was around 4:00 a.m. the following morning. I couldn't sleep to save myself. I cleaned every room in the house, cleaned out every drawer, cupboard and cranny, mopped the floors, pulled weeds, washed the car, and mowed the grass. I had so much energy that it was scary. I couldn't walk by anything that needed to be done without doing it right there on the spot. I had NO appetite whatsoever, didn't feel like eating a thing. It was unreal. I've since learned that one of the women on Desperate Housewives is sneaking her son's ADD medication just for this purpose, ha ha ha.

But anyway, it was a Godsend for Sophie in so many ways. It's an amphetamine, but I'm not sure why younger people can take it and have such opposite effects. Weird.

LOL, Vonda. I need some of that to get my housework done. Only joking....we actually have a recovering drug addict living with us at the moment and her drug of choice was ice which is a form of speed.

Sorry SWoody - not really adderall related but can't resist Vonda's humour

LOL Vonda. That's the difference that my narcolepsy drugs make for me. When I remember to take them I hardly eat for days, and am zooming around here like a crazed woman. Unfortunately it does NOTHING for focus, so even though I'm moving fast, I have like 50 unfinished projects! LOL

When Hannah was about four she had some issues with impulse control and concentrating. Her Dr was convinced that she had ADD. We did a trial of adderall for a week. Hannah was absolutly miserable on it and actually acted like she was depressed. We stopped using it. I was not entirely convinced that she did have ADD and we switched Dr's. Since she has gotten older her issues have definitly gotten much better. I am sure it effects kids in different ways but for Hannah it was horrible. For some kids I am sure it is very necessary though.

Karyn I can SO see how this could be habit forming, addicting. I don't see how drug users do it. After being awake all those hours with nonstop work I was so exhausted. They do this every day and never sleep. No wonder they are skin and bones.

Leah I could never take one two days in a row, it would kill me. But I'm stashing a few in the back of the cabinet so that if I ever have a time where the house needs to be clean for company or a party or there is stress to get something done I know that I'll be able to get it all done.....and maybe lose a pound in the process!!!!!

I dont' like adderall at all. There are so many options now, better and more accurate dosings. Adderall is great in a small percentage fo the population but over all has too many side effects and such! COnsider all of your options FIRST before resorting to adderall!-Courtney

Oh and wanted to add here that it does work just the opposite on Sophie. She still eats like a horse and it never took away her appetite. I guess she's the small percentage that hasn't had a single side effect from the drug, all positive.

Stimulants, in general, don't work so great for most kids who have DS. (I'm assuming this is a DS related question???) They don't metabolize it the way other people do. We had her on it in combination with another med, prescribed by a doctor who's SUPPOSED to know these things, and found out for Dr. Kapone that the combination she was on was extremely dangerous!

You know, he's pretty easy to reach. You can contact his office and I bet they'd give you some information about the preferred meds for kids with DS.

My older typical daughter has ADHD and has used Ritalin, Adderall, Adderall XR and Concerta. My daughter had fewer side effects using Adderall than Ritalin. Adderall XR did not work for her at all. She is presently using Concerta. It is just as effective but she has the fewest side effects.

I know many people are very judgemental about using meds for ADHD. Many people just don't believe ADD or ADHD are a true diagnosis. I am positive it is a biological disorder. I know that my daughter was suddenly like all the other kids the first day that she took Ritalin. Honestly, I can hardly post this without tearing up. She is now 16 and has found many ways to compensate for her ADHD. We tried going without meds for a year but she found her junior year to be more than she could handle without meds. When she was younger, she would make a's and b's with meds and failing grades without them.

My younger daughter with Ds doesn't appear to have an attention deficit. I am really amazed at how long her attention span has become in the past few months. She can easily sit and work on her speech home plan for 30 minutes. She is actually starting to read. I am sooo excited! My older daughter wasn't able to read a single word until she was in second grade.

Chris

My feeling is that if taking a simple pill every day that is nonaddicting, and wears off in 7 hours helps a child function, focus, get good grades and feel better about themselves, then I'm all for it. Just like my Zoloft. A simple pill makes me feel like a human being. Yes it's the pill that makes me feel this way and without it I feel like crap, so why not take it?

Leah you just reminded me to tell everyone that Dr. Kapone walked with us at our Buddy walk a few weeks ago. Noah has never gone to see him, but I've heard SO many great things about him and he seemed like such a great man.

Thanks all for the great replys! Vonda, you crack me up! I was just reading in last weeks' People magazine (the one about being too thin in Hollywood) and it seems that Adderall is the latest "drug of choice" for weight loss for these starlets!!!!

Ally is only taking 10 mg right now. She has been on it for almost two weeks. She was diagnosed with ADHD and ODD. She was off the charts on both. So far she has been doing well. She seems happier and more cooperative -- so far. She's been doing better in school too in regards to her attention span. She now spends more time in the regular Kindergarten class than with her special class. We were hesitant to do medication at first, until we ruled out everything medical that could be contributing to her behavior and attention span issues. She still is a little chatter box but at least she can sit still and concentrate.

Vonda I have to agree with you. Even though we weren't crazy about the idea of medicating her, her attention and behavior issues were starting to interfere with her progressing at school. We had to do what was best for her. Home life was just miserable and I really think she was unhappy. I'm still kind of waiting for the other shoe to drop. After 5 years of redirecting and struggling, I haven't gotten used to actual calmness yet!

Be prepared! Meds in kids with DS have a common problem of not lasting very long. I thought, either I was crazy, or there was something REALLY different about my kid (you know, cuz that extra chromosome doesn't make her different) because meds would work great for about 6 weeks to a couple of months, only to one day wake up and they don't work anymore!

When we went to the Atlanta conference I got to hear Dr. Kapone speak. And at question time I got to stand up in front of this huge group of people.....crying....while I asked him WHAT'S WRONG!!!! Why do they not last? My is my kid so doggone aggressive on second and sweet as pie the next?

He said they don't know why the meds don't last long, but that we are NOT alone! It happens all the time with kids who have DS! We had *just* switched meds like 2 days before Atlanta and Angela was a totally different kid. Dr. Kapone said this current combination is the best one there is for kids with DS. And I gotta say....he's right!

Angela started off GREAT on the new meds. In fact, she STILL IS!!! She is happy, and staying in the mainstream classroom 90% of her day. This is the longest she's been on ANY combination. She started to have some problems in the afteroon, but she's also exhausted those days, and comes home and is in bed for the night at 6:00. A little adjustment to the meds and the afteroon issues disappeared again.

I don't care what people think about meds. If ever they doubt they are truly needed, I invite them to spend a week with Angela unmedicated. They will be beating down the doors of the pharmcy!!!!

But of course, there is one trade off to having Angela on her "love pills", and that is the weight gain. Risperdal causes a voracious appetite. Angela has gained 13 lbs since starting it on July 19th. She went from a BMI being at the 15% for her age, to the 65%. She still does not look overweight. Apparently she just looked REALLY SKINNY before and I didn't notice. She was 48lbs she she started the meds, and she's now 64! Our ped has said if the weightgain continues we'll have to stop the meds. NO WAY ON EARTH. I would rather have her a little heavy than killing people around her. But I'm sure I may eat my words one day...no pun intended of course.

My oldest (typical) was DX'd with ADD (and ODD by the first doc we saw) and our first thing to try was the Adderal. We started with 5mgs and we kept having to up it a bit, more and more for a while to get the perfect spot for the ADD.... so.. by the time that amount was figured for the ADD her other stuff, like the ODD type behaviors were OUTTACONTROL! Truly bothersome to the point we were concerned for OUR safety AND hers. She was in the 6th grade at the time. So we realized Adderal was not for her or us. We then tried Concerta which did nothing and then Wellbutrin that did nothing. So... at 13 we just do our best to monitor her, med free. She does ok so we just keep an eye on her and her environment to make sure all is going well or we head back to the docs for other methods.

Each child is SO different on these meds... it's what works best for your child.. and YOUR sanity LOL

A.