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Post by suzeedee on Jan 10, 2007 23:24:36 GMT -5
Hi! I haven't been around here in ages & I was never a very frequent poster so I'm sure I am not remembered but I posted this question on another board & A told me to come on over here & ask so here I go!! BTW......My name is Sue & my son Alex is 5. Here is my question from the other site... So Alex is being referred to the ADD clinic (As long as ins will cover it) at the medical clinic where we all go. At his 5 yr I was telling his doc that things are getting way out of hand. That he is so aggressive especially with Brian & his behavior is becoming unsafe. He talked to the doc & he agreed to take him on as a patient. So my question is......any suggestions, comments, things to watch out for, advice, etc for me. We do not have our appt yet. We are waiting for the pack of info that we have to fill out. We see a social worker & then the next time we see the doc. This is a totally new thing for me. Thanks in advance for any help! Sue
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Post by ALLISA on Jan 11, 2007 8:15:29 GMT -5
Just wanted to say hi....don't know of any things to watch for....my only advice is when you fill out all the questions and surveys be as THOROUGH and DETAILED as possible. I usually try to write about Erin as if she WASN'T my child....I'm so accustimed to her bahviors that they are the norm for me.....so I have to step back and remind myself of how she is percieved by others. BTW....my daughter has the dual dx of PDD NOS....don't know the specifics of ADD....but I know the frustration of behaviors ! I hope you find some answers at the ADD clinic....let us know !
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Post by wrblack on Jan 11, 2007 11:57:49 GMT -5
Well, I'm just as ignorant as Allisa, maybe more so. But you might want to review essay on Dr. Leshin's site, www.ds-health.com/add.htmGood luck, Bob
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Post by Connie on Jan 12, 2007 9:24:08 GMT -5
Sue, Hi, I'm Connie mommy to Collin (DS) who is soon to be 7. He was diagnosed with ADHD in October. He is on a form of Ritalin ER 10mg.
Collin was having major behavior problems in school. While he is not a perfect child I did not have any of the problems the school was having with him at home...I think he new he could not push mom around. Collin is in Kindergarten all day and they were ready to KICK him OUT!!! and change his placement. They were going to put him in a Behavior Program which would not be right for him. He would pick up on way to many bad habits. While I wanted so much for this to be the schools problem and there lack of ability to take control I knew in my heart it was not so after much pray and thought we chose to use medicine. You don't know how much I wish I had not waited and pushed to have him on something earlier. It has made the biggest difference in his life at school. While he is not a perfect child still it has given him the ability to slow down and think things through. It has even helped him with communication and he now talks in longer utterances and uses words I didn't think he even knew. If he really has ADHD and you decide to try medication you will notice a difference almost immediately...with in a week. If it's not ADHD the meds won't help and you will no to try something different. Good luck and if you would like to talk please email me. Connie
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Post by justinsmom on Jan 14, 2007 2:37:26 GMT -5
Hi Sue, I'm Jackie mom to Justin who's 6 and also has been dx'd with ADHD. He's currently taking Dexedrine. He was just like Connie's little guy. The med has done wonders. If your son is in school ask his teacher if she could write up a little note describing his behaviors at school, any and all info you can get regarding his behaviors will help the docs. Hope it helps
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Post by Connie on Jan 14, 2007 9:31:52 GMT -5
Sue,
Adding to what Becky said...Our doctor sent a test for every teacher involved with Collin to complete. I forget the correct name for the test but, once completed it had something like a matrix that would give the doctor a better picture of his behaviors and tell him if it was ADHD or not... Hope this helps, Connie
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Post by jlo on Jan 14, 2007 11:01:43 GMT -5
Hi Sue, I just recently rejoined uno mas looking for someone o talk with about my son Colby. He is six and has DS and ADHD. This website has been a terrific help and I'm hooked again. Anyways Colby is on ritalin and has been since he was a little over four. I was the one to bring it up at his IEP. Being a pre-school teacher myself I had a pretty good idea of what I was seeing and the team just confirmed it. Before Colby was just everywhere, couldn't stay focused on anything, and he acted on some pretty significant impulses, Since hes been on the meds he is doing so much better at sc hool nd at home with his behaviors. It took a little while to get the dosing right. He gets a tab and a1/2 in the am crushed in applesauce then the school nurse gives him one tab after his lunch. He sleeps good at night but it does decrease his appetite while hes on it. His peditrician choose ritalin cause it has so much history backing it up verses the newer meds plus Colby had open heart surgery when he was two and she justfelt this was the safer choice. You can email me at Jen.colby@cox.net if you would like. Jenn
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Post by Connie on Jan 14, 2007 11:37:05 GMT -5
Sue,
Collin sounds a lot like Jenn's son Colby...with the impulse control, not staying focused, and having open heart surgery at 2.5 yrs. The only differences are he did not start taking his until he was 6 and we changed him over from taking it in the morning and at lunch to taking an extended release formula just in the morning. This is the same medicine just...it just has a different delivery system. Collin does not have the "REBOUND" now between the doses. The time where one pill is wearing off and the next dose is just taking effect. Collin also swallows his pills always has....the are small enough we just put them in a spoon of yogart or with a small drink of water. Connie
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Post by jlo on Jan 14, 2007 13:58:39 GMT -5
Connie What is the name of Collins med. How is his sleep and appetite? Jenn
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Post by Connie on Jan 15, 2007 9:23:22 GMT -5
Jenn, Collin takes Methylin ER 10 MG...which is the equivalent to taking Methelphenitate (Ritalin) 5mg 2x a day. I does affect his appetite but not to badly....He usually eats a really good breakfast and good supper but, does not really eat a lot at lunch. I've not had any problems with him sleeping so far. Connie
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Post by lespring on Jan 18, 2007 23:22:21 GMT -5
I'm Leah, mom to Angela who is 10. She has ADHD (at one time the developmental ped said in a report, "Her activity level is striking." ...ummm....strong words in my book! LOL
Anyway, she first tried Ritalin. Ritalin is NOT the drug of choice for kids with DS. Most kids with DS respond to VERY TINY doses of it. They don't metabolize Ritalin the same way typical kids do. Angela was fine for a few weeks and then she went crazy. Extremely aggressive, sleeping even worse than she normally did, and the OCD related behaviors TOOK OVER EVERYTHING! Ritalin often makes OCD worse.
She has been on Straterra, adderall, guanfacine.....what else...I know there are others.
Then last summer I was ready to hospitalize her. She was so horribly aggressive. She couldn't manage even 1/2 day at school without becoming seriously dangerous. I had read about Risperdal but was a bit leery of it. Finally our ped convinced me to give it a try. We started her on it 2 days before the national convention. I actually thought about cancelling our reservation because I didn't want to be so far from home on a new drug. KWIM?
Angela was a different child.
She was so happy. Smiling. Not a single swear word, hair pull, kick or slap. She was heavenly.
At the conference I sat in on Dr. Kapone's talk. It was the first time in 10 years of parenting Angela that I didn't feel totally alone. There sat 100 or so parents who were all dealing with the same extreme behaviors that I was dealing with.
He talked about the different drugs and why/how they don't work for kids with DS, or they make matters worse. At the end I got to talk to him privately. I was in tears by that point....but I told him about Angela and my struggles. I wanted to know WHY IN THE WORLD drugs will work for her for just a few weeks, and then they just stop! He said this is VERY COMMON among kids with DS. To keep track of the ones that work, even if for a short time, because you'll need to go back to them at some time. He told me to combine a very small dose of Guanfacine with her Risperdal and that this particular combination is THE BEST ONE for kids with DS.
Angela has been on this combo since the last week of July....the longest she's been on anything. There is one downfall though. The #1 side effect of Risperdal is a dramatic increase in one's appetite. OMG.... at the conference Angela was eating 2 and 3 plates of food from the buffet! At breakfast one morning my friend and I watched her eat more than the 2 of us put together!
Needless to say, Angela has put on weight! She started out extremley underweight. At 10 years old she was 48 inches and 50 lbs. Now, just a few months later she's 52 inches at 73 lbs! To me she looks heavy, but I'm so used to seeing her thin. On the growth charts she is ok...I just hope it lasts.
Angela is at an age where it's tough to find a developmental ped to deal with her issues. I'm determined to get to see Dr. Kapone in his office. I want to know why Angela's behaviors are so extreme. While it was nice to see that I'm not alone, I still don't personally know anyone who's kid is as extreme as Angela. It would be nice to not have to walk this path alone.
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Post by suzeedee on Jan 19, 2007 2:18:38 GMT -5
Thanks guys for your input. I sent off the paper work regarding ins so now I am waiting for them to send me the forms & the 1st 2 appointment dates. I was told that there would be something for his teachers to fill out also. I hope it doesn't take too long. His behaviors are really stressing me & DH out.
Alex's behaviors in a short version are......pushing his brother down, pulling Brian's hair to where handfuls are coming out, climbing on the tables, "wiping" everything off of the tables & counters, throwing toys, food, anything really, running all over with what seems like no rhyme or reason. Yes we have tried time outs....he laughs, I have spanked (not proud of it) it back fired & made him think he could do it back or to his brother, tried saying nice hands, hands to yourself etc. Nothing works. He laughs at everything. Hopefully this will help some. I will check in as I find out more & I will go into the appointments with the info you guys have given me.
Thank you!!
Sue
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Post by momofrussell on Jan 19, 2007 9:27:45 GMT -5
Sue... glad you popped in... yes please keep us posted on how it's all going with the docs and such when you get to that point!
HUGS!
A.
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Post by Connie on Jan 19, 2007 9:46:03 GMT -5
Leah, While Ritalin may not have worked for Angela it is working well for Collin. Collin has been on a "form" of Ritalin since the beginning of October and we are not seeing any of the problems you described. While he does not eat a very good lunch he does eat a good breakfast and dinner. It also has not affected his sleep. He goes to bed at 9 or 9:30 and gets up at 7 and would sleep longer if I would let him. One thing I have seen maybe once or twice at the most is if he is overly focused on doing something and you try to get him to change he can get more defiant and obstinate than you are expecting but he does not get violent .Who doesn't if you are focused on doing something. While a lot of our kiddos do experience and react in similar ways to things we have to keep in mind that like any children each one is different and what works for one may not work for another. The reason I chose Ritalin is because while it is a stimulant it was not a major psychotropic and it is in and out of his system within 4 hours (unless you use an ER formula) and he does not have to take it everyday. I don't want to come across as pushing for this drug or any other drug because God knows I did not want him on it, but after going to the school several times and spanking his bottom and having IEP called to kick him out because of his behaviors I am thankful we found it. It has given him a chance at a inclusive education. Connie
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Post by lespring on Jan 19, 2007 11:12:40 GMT -5
I totally agree, all kids react a bit differently. I wasn't aware until talking with the doctors that do the research that unlike typical kids, it's VERY common for our kids to respond to a drug for a few weeks or months, and then suddenly it quits. The same happened to us with every single med Angela has been on.
I was soooo against having Angela on hard core drugs. (Like Risperdal) but man, do I wish I'd agreed to it sooner. Might have saved us an entire school year that was wasted.
And I know about being kicked out. Angela is in 4th grade, but only goes to school 1/2 days now. Longer than that and she's a mess, and extremely agressive. They get more academic time out of her in a shortened day than they did when she was there full days! The shortened days do kinda cramp my style though. LOL
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