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ADD-ADHD

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KatieB
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PostPosted: July 17 2007, 10:40 AM    Post subject:
ADD-ADHD
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I've been wondering about Matty and ADD-ADHD. He has so much energy, so scattered in the things he does, attention span is so minimal (to us anyway), the only things he sits still for over about 7-10 mins are the Shrek movies, and the show Everyone loves Raymond. He than will get up, run, not walk around the house calling out for the "Barone family" I have friends and family mention his activity level, the excessive flapping, yelling, will stop for about 5 mins to stare at lights in celings, or to bang or throw things, try to wreck property, has tried to leap down stairs at my sis's house. We are so used to this, when not at home, we have to take turns following him as to prevent injury to himself, others, and peoples belongings. He thinks he's just hilarious, possibly being a show off? At least 5 of his Dr's have seen Matt out of control, try to trash the exam room. since he's almost 5yrs, 3 of his Dr's have asked me if ADD-ADHD has ever been a thought, one stated that Matt is quite rambunctious, and another asked if Matt could have PT before seeing him so his energy maybe a little less. As he gets older, I'm really contemplating that, plus he's having some sensory issues lately too.
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momofrussell
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PostPosted: July 17 2007, 11:51 AM    Post subject:
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Well, I can't help with judging if your son is or isn't.. but a good devel psychologist/psychiatrist or even a develp Ped or ped Neuro might be able to help you in this. What does your regular ped say? I am thinking someone should be referring you to someone. Sounds like you need some answers!

It is true some of our kids can have a dual dx of DS and ADHD and can be managed with the proper help. Find someone that specializes in ADHD and also knows DS if possible!

good luck!!!!

A.

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KatieB
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PostPosted: July 17 2007, 12:54 PM    Post subject:
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thanks

Two of the Dr's that asked me what I thought, are the Pedi and developmental. The Pedi refers us for any specialists. guess we have held off before now, since he's only 4, but with him entering kindergarten in Sept, maybe it's time to talk more about this. Don't want him to disrupt his class, throw things that will unintentionally hurt another child. His IEP is a 1:1, but he's also very, very, fast. I got a name of a Dr from the Ds clinic in Boston, developmental neuro, but he's booked until Halloween, so we're on a cancellation list. I'm also planning on having a chat with the school psych right before school starts, or right after. She covers 2 school in town, and has known Matt for nearly 2 yrs, see what her opinion is too. think I'm on the right track, but seeing the Dr's and school psych, can take a while, unless I get the Pedi to call on our behalf, which he has done before.
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PostPosted: July 17 2007, 2:09 PM    Post subject:
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In the mean time, you can also call an IEP when school starts and suggest a behavior eval and get a behavior intervention in place in the IEP just incase the active behavior truly is getting in the way of learning and class time. That way you all will stay proactive, while waiting for the doc appts.

Good luck!!!

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PostPosted: July 27 2007, 8:54 AM    Post subject:
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I received another appt note from when I took Matty to the developmental center last May. There were parts of it that mention "after reading other notes prior to this visit, this childs Dr's have mentioned Matthews high activity level during visits" "this child was wonderful, and extremely active during this visit" and so on and so forth. At least it's documented and the Dr's don't see me as over exaggerating Mattys energy level. I spoke with his Pedi the other day, and he has agreed, that Matty probably does have ADHD, and gave me a # of an office near us to call, and see if the specialize in ADHD/DS and behaviour strategies before we talk meds, and gave me a name of a neuro from Boston Childrens. any behaviour strategies to be share with me?
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PostPosted: July 27 2007, 9:34 AM    Post subject:
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Sorry.. I don't have any. Sad But I think going to see the other docs you just mentioned is the right way to go!! Please keep us posted! And yes, glad it's documented in the charts...that does help.

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PostPosted: August 20 2007, 8:32 AM    Post subject:
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We decided to get Matty more OT outside the realm of school, just as he has been getting extra PT for the past 8 months. He wil get an hour 1 wk to help more with the sensory issues. The report came a few days later after the will last week, for me, ADHD red flag observations were noted. Very high energy level, short attention span, able to sit at table for activities for a very short time before saying "done" needs constant re direction, fidgety, prefers to crash into the foam pillows, does not scan the environment for safety, scattered, etc..etc. Other things that I realize he will need in regards to OT. At least this report is another documentation for when Matty sees the Genetics Dr in about 2 wks, and the Neuro in about 3 wks. At least nothing in this report was surprising.
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PostPosted: September 10 2007, 3:09 PM    Post subject:
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Matty saw the Genetic Dr last week, After reading Mattys other Dr reports regarding his hyperactivity, lack of focus, inattentive, impulsive, energy level, reading the OT eval report, and watching Matty from afar at the office,and she has come to her conclusion that Matty does indeed have ADHD, and feels he should see a Neuro. Which is all set for this fri morning. I'm not in the least surprised, since we have thought this way since last winter. fill out more paper work and go from there.
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PostPosted: September 14 2007, 6:09 AM    Post subject:
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Mattys neuro appt is today, should be interesting. Have to share his OT appt last night with this Dr too. Matt really wore out the OT, she was running after him, trying to get him to try new things other than jumping into a ball pit, or wanting the slide was a battle, but she didn't give up and cave. He would last at a task for about 30 secs, stop, and try to run away, he was thrilled when he did get away, running, yelling, and flapping, thinking he's hilarious. It was an exhausting visit for the OT, didn't faze me in the least, 2nd nature.
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PostPosted: September 14 2007, 7:26 AM    Post subject:
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LOL poor OT!!! Has the OT tried things like swinging, deep pressure or "weighted" items like vests to relax Matty? That might help. Although Russell isn't hyper nor has ADD/ADHD, Russell IS kinesthetic so he is CONSTANTLY in motion... so we have to use different "relaxing" techniques for him at home and school. We weight him down so he will sleep, he loves to feel confined to relax. they also try weighted vests at school and other things.

And then sometimes he needs rough play to get all those other sensory issues out! It's a challenge to keep all these sensory issues in order!

Good luck with the neuro today too!

A.

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PostPosted: September 14 2007, 9:50 AM    Post subject:
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We had the weighted vests for awhile with Mikey. Not sure they worked other than building up his muscles! Laughing

Matty sounds a lot like Mikey used to act (and still does to some extent).

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PostPosted: September 14 2007, 11:07 AM    Post subject:
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I'm interested to know what the neuro will say and suggest.

I still have no idea why Kayla has to see a neuro and have this VEEG. I guess I just associate neuros with seizures and stuff. I'm not sure I get what they can do for Autism / ADHD.

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Tom
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PostPosted: September 14 2007, 11:19 AM    Post subject:
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ecki wrote:
I'm interested to know what the neuro will say and suggest.

I still have no idea why Kayla has to see a neuro and have this VEEG. I guess I just associate neuros with seizures and stuff. I'm not sure I get what they can do for Autism / ADHD.


You need a neuro to rule out something physical like a tumor.

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PostPosted: September 14 2007, 12:37 PM    Post subject:
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So, after seizures and anything else physical has been ruled out we can be done with the neuro? Sigh, I'm tired of all these specialists!

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PostPosted: September 14 2007, 12:42 PM    Post subject:
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ecki wrote:
So, after seizures and anything else physical has been ruled out we can be done with the neuro? Sigh, I'm tired of all these specialists!


Yes, then you move on to a pediatric psychiatrist! Wink

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PostPosted: September 14 2007, 1:07 PM    Post subject:
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We had the weighted vests for awhile with Mikey. Not sure they worked other than building up his muscles!


I hear ya!

Matty sounds like Alex. We are going through many of the steps you are in too. If someone, somewhere, can give me behavioral help, educational help, and disciplinary help for him, I'll go around the world to get it! I hope you get there with Matty too!

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momofrussell
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PostPosted: September 14 2007, 4:51 PM    Post subject:
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Well, we didn't even get THAT far with our Ped Nuero LOL He gave us the Autism DX, saw him like 2-3 times total... and he said we didn't need to see him anymore because he can't help with the speech issues , ect...

We JUST talked to our ped again about all of this too! He said "have you seen a ped neuro".. I was like... UM>>> YES! That's where we STARTED! Everyone gives me the run around... and I am hitting dead ends on the behavior specialists... so I keep trying...

So yes.. it's draining all the specialists sometimes!

A.

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PostPosted: September 14 2007, 6:57 PM    Post subject:
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thanks everyone
The OT tried compression, which was fought against, there are numerous types of swings at the OT place, but Matt wanted nothing to do with them, fought about that too. We will be trying the vests as well. The Neuro appt went well today, was over an hour long. I went there armed with copies of our Dr notes, OT eval, and high lighted the behaviour comment. After readingthe info that I had brought, the hospital-ADHD developmental paperwork, her observations of Matt, she also feels that he has ADHD, talked about meds, his history, actions, impulsiveness, clueless about safety, fearless, aimless. She heard the yelling, saw the flapping, being scattered running thing to thing. Other than ADHD, she felt that his behaviour also contributes to the fact that since he is delayed, his brain development is probably that of a 3-4 yr old, that may exhibit alot of the same behaviours of a child that age, instead of a 5 yr old. I got a little teary when I mentioned that nothing we do seems to matter in term of discipline, or just doesn't sink in. Can't remove him from a situation and walk away, he won't sit still, he'll take off, laughing, flapping, etc. The Dr gave me a name of a behaviorist from the hospital, but she's probably booked for some time. I'll go on our insurance web site and see what I can find about that. The Dr examined Matty, no reflexes, which she said was due to hypotonia. She gave me a copy of the MRI report from last June, seems there are not 1, but 3 tiny spots on the brain, probably due from the AV Canal surgery he had as an infancy. In that case, when a child is young, the brain may re wire itself, and by pass that area. So, all in all it was a good appt, she answered alot of my/our questions. The Dr asked one of the RN's if she could take Matty for a walk around so we could chat, when I was done, the RN said "I don't know how you do it, I'm tired from chasing him around, and keeping him out of bumping into people, and out of examine rooms" I just laughed, and said welcome to my world. My husband and I will chat more about meds, if we go that route, but would rather try behavour strategies first. At least I had alot of documentation going in. So, this Dr wants to keep in touch and wants to know how things are going. She was so nice and soft spoken. If we are unable to get this under more control, yes, a child psych would be the next step. Specialists galore, think Matty is up to 9 or 10.
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PostPosted: September 17 2007, 9:34 AM    Post subject:
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(((HUGS))) I can so relate.

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PostPosted: October 29 2007, 2:18 PM    Post subject:
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Got the note back from Mattys neuro appt in Sept. "Review of the questionnaire shows Matty to have significant hyperactivity and impulsivity. clearly, he fulfills criteria for ADHD to a moderate degree" "His attention is quite limited" "specialists have also noted his limited attention span" "Matts attention span was quite limited and he needsed many repetitions to get through this examination" and so on and so forth. So we'll discuss where do we go from here, that's our boy. Mattys GI Dr was the one who was quite concerned, despite the delays, the first one top approach me about this, he was right, and we knew deep down too. His recent IEP stated some evidence of ADHD too. We'll go from here and move on with another diagnoses.
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PostPosted: October 29 2007, 2:20 PM    Post subject:
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Did they suggest any medications to help with the attention span?

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PostPosted: October 29 2007, 3:11 PM    Post subject:
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Did they suggest any medications to help with the attention span?


My thoughts exactly. With Alex and Matty going the same direction on this, I am very curious what your docs are doing.

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PostPosted: October 29 2007, 3:45 PM    Post subject:
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The Dr has suggested a few differant meds, the Dr said that the meds aren't a cure all, but will help with focus and attention. Maybe when Frank reads the note, he'll bend, right now from his standpoint, no meds. He's realizes the behavior, and the ADHD so we'll have a chat after the kids go to bed tonite.
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PostPosted: October 29 2007, 6:44 PM    Post subject:
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Katie, my husband is really a stinker about that too. I talked him into a one week trial. The docs say that with the ADHD meds you can see a clear response right away, so a 1 week trial should prove them beneficial or not. Hope that helps.

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PostPosted: October 29 2007, 7:12 PM    Post subject:
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Meds are such a tough decision when the kids are so young. I was very hesitant to put Laurie on meds, but we've seen such a difference, I'm so glad we did. But Kayla's so little, I don't think I'd consider meds until she's at least 5 or 6.

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PostPosted: October 29 2007, 7:23 PM    Post subject:
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I don't understand this "no medicine" view. If your child had cancer would you refuse chemo? If your child had strep would you refuse antibiotics? But because it is a mental issue, it's OK to refuse medicating your child? Does having the ability to go around saying, "I would never medicate my child" make up for the suffering your child must go through? Because make no mistake, if your child has ADHD, he is suffering and the medications might allow him to get control of himself and be himself.

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PostPosted: October 30 2007, 8:08 AM    Post subject:
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I don't understand this "no medicine" view.


I don't either, I'd like to kick him in the ass quite frankly. He's always big on cough syrup and tylenol for them, why not meds to help him succeed?

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PostPosted: October 30 2007, 8:25 AM    Post subject:
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good points, probably because he just doesn't want Matt on another med, not to be an a**, think that was when Matty was a little calmer., and the behavior was tolerable. We talked last night and I will get in touch with the Neuro, she'll consult with the cardiologist, and I will call GI and speak with him about this too since Matty is on prevacid, which may not have any contraindications hopefully. Hopefully we'll find the right med that works for him ASAP.
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PostPosted: October 30 2007, 8:35 AM    Post subject:
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I hope you find it too. I have been googling ADHD and DS and it appears that ADHD does have a dramatic affect on kids with DS, and they respond well to meds.

We see the neurodevelopmental ped on Thurs the 8th, and in the meantime her and the psych plan to talk and get their heads together about Alex and find out where to go with him.

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PostPosted: October 30 2007, 10:32 AM    Post subject:
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Matty will see the Neurodevelopemental-behavoir Dr this afternoon. Bring the Neuro note with me. Hope the Genetics Dr, who knows Matty very well, has a nice chat about him with the other Dr before we get there since they're both in the same office. Have to go call the Neuro.
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PostPosted: November 09 2007, 11:10 AM    Post subject:
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The appt 10 days ago went ok, except for the fact that Matty was in a destructive mode. I have e mailed with Neuro 2x, she was waiting to hear from the cardiologist regarding meds, left her a voice mail, haven't heard back. Last night the Neurodevelopmental calls to check on things, she will call Neuro and Cardiology, will oversee the ADHD-meds, and I will hopefully find a local place to get a neuropsych eval-test appt for Matty, and the same place will hopefully want to take him for behaviour issues, since it's over a year wait for that type of test at Childrens, which the Neurodevelopmental will also call on Mattys behalf, since she's on staff there. Meanwhile, I had called numerous folks on our insurance, either they wouldn't call me back after leaving voice mails of my son has DS, ADHD, etc..etc I called the DS program in Boston, and Matty has now been referred to a top line psych through the program coordinater, that's how this Dr works, referral only, that was before I spoke with the neurodevelopmental. At least with the Neurodevelopmental I don't have to pull Matty out of school, going to childrens Hosp for the psych I would. Catch 22, always something. this has to be the slowest moving med thing Matty has been through, usually I would have answers by the end of the day. PITA! l
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PostPosted: November 26 2007, 2:54 PM    Post subject:
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Matty has an appt for a neuro-psych test early Jan at an office 2 towns over. He also started ritalin yesterday see how that goes, will have to bring him to the Pedi office for a set of baseline vitals faxed to the Neuro Dr. This was odd, this morning, he kept touching my head with a kddie broom, I finally took it away, and asked him why he was doing that, he was completely serious, no laughing, or yelling, "don't know" It wasn't hard touching my head with the broom, just annoying. the way he said that, maybe he really just doesn't know, no rhyme nor reason, not being mean. Other than that, same thing, differant day.
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PostPosted: December 03 2007, 6:47 AM    Post subject:
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Before Matty went on ritalin, the Neuro Dr mentioned possible weight loss while on this. sicne ritalin is a stimulant, Mattys appetite has decreased, and he's lost almost 2 lbs in 9 days. He had a farily decent appetite before going on ritalin, even losing interest in drinking, his fav are lemonade and popsicles, but right now he's at take it or leave it, and Matty not wanting to drink is not a good thing.
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PostPosted: December 11 2007, 9:57 AM    Post subject:
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Matty is still on the same track while being on ritalin, except for some mroe changes that school is concerned about. He is still eating anf drinking very small amounts, and losing weight. He won't drink Pediasure anymore or milk, but ice cream works. I have spoken with his SPED teacher the school RN, and she has told me things that the PT has noticed. Matty seems to be alot weaker, spacey, balance is off, as the aide nearly had to catch him yesterday while waiting for something, PT feels that he is not processing things as he normally does, his stumbling is not his normal stumbling, his personality has changed, RN feels that his eyes are red and glassy all the time at school, while speaking with him it takes him alot longer to respond, groggy, tells staff at school, he's really tired, My husband and I think ritalin and Matty aren't a good match, I put a call to the Neuro office yesterday, see what they have to say when they return the call.
Katie
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Stephanie
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PostPosted: December 11 2007, 2:57 PM    Post subject:
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I am so sorry the meds don't seem to be working properly. Could it be the dosage is too much? We go in to the ped today for our son who has ADHD, he will have his meds up'd...he is on Concerta. That has been working well for us. Joey does not have DS though.

Good Luck!

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KatieB
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PostPosted: December 11 2007, 4:52 PM    Post subject:
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thanks Stephanie, will have to see what else is out there, preferable not a stimulant.

I heard back from Boston Childrens, Matty is now off of Ritalin per a nurse Practioner for the Dr. He had a horrible fit this afternoon, complete with trying to hit, kick, spit, and got his AFO's off, with his sneaks still attached trying to hit with them, lovely. Hasn't been physical like that since end of Oct. He has pushed, tryed to stomp in feet, but it didn't hurt, tolerable obnoxious. At least now, he and sis are having fun playing together i'm going out tonite to a workshop for Behaviour probs in kids with special needs. the man giving this has written numerous child developmental books, on staff at Harvard Med school Psych dept, and is also on staff psych dept at Massachusetts General Hosp, so with those credentials, I'm hoping to learn at least one thing I can apply to home.
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PostPosted: December 30 2007, 8:24 AM    Post subject:
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Spoke with the Neuro, and she feels that 5mg of ritalin, not 10 as before may work. Even though this is now fast acting, Matty is not a breakfast kid, battle trying to to eat the bare mnimal before school, there's one meal meal gone before ritalin, if it's not out of his system by lunch, there's another meal possibly gone, has another dose early afternoon at school, who knows if he'll have dinner. but won't know if we try I guess. If this round of ritalin doesn't work, we'll be done with it. the Neuro informed me that she only prescribes stimulants, so I will then speak with the Neurodevelopmental and see what she thinks. Seems lately, that our friends whom have 3 yr old behave and listen better than Matty. I know he's delayed, but it's tough since he's older and weighs more than a 3 yr old.
Katie
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PostPosted: December 30 2007, 8:24 AM    Post subject:
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Spoke with the Neuro, and she feels that 5mg of ritalin, not 10 as before may work. Even though this is now fast acting, Matty is not a breakfast kid, battle trying to to eat the bare mnimal before school, there's one meal meal gone before ritalin, if it's not out of his system by lunch, there's another meal possibly gone, has another dose early afternoon at school, who knows if he'll have dinner. but won't know if we try I guess. If this round of ritalin doesn't work, we'll be done with it. the Neuro informed me that she only prescribes stimulants, so I will then speak with the Neurodevelopmental and see what she thinks. Seems lately, that our friends whom have 3 yr old behave and listen better than Matty. I know he's delayed, but it's tough since he's older and weighs more than a 3 yr old.
Katie
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PostPosted: December 30 2007, 8:23 PM    Post subject:
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I brought the new ritalin script to be filled today, with Matty in tow, since Frank was doing some work to the house, and Ashley stayed home to "help" him. I didn't put him in the stroller, figured, have my license ready, not wait and get out of there ASAP. It was awful, Matty was so out of control, knocked over numerous bottles of mouthwash with his feet, this is after doing his maybe 6th stop, flop, and drop onto the floor of CVS. Seems as soon as I got things picked up, and thought he was far enough away, but he wasn't, more products on the floor, all of this happening while he was on his back o the floor like a damn turtle fighting me with every ounce of his being, yelling, laughing too loudly, trying to charge at people, it was exhausting. Meanwhile, the pharmicist knows us, so they didn't have ritalin liquid, so he just called other local CVS, said no one has liquid ritalin until Weds. I was physically tired from a non stop battle, that I forgot to to get the other things we needed and just left out of pure frustration. He really could have hurt some petite ederly woman he tried to run up to, she looked scared, reminded me of a football play with Matt on defense, speaking of football, WAY TO GO NEW ENGLAND PATS! Slight detour from this afternoon. I have deceided that from now on, if Frank or my brother isn't with me, I don't care how long we'll be in a store, 30 secs, or 30 plus mins, he'll be in the stroller, not with me hurting myself or someone else, even though he doesn't intend to hurt anyone.
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PostPosted: January 10 2008, 2:14 PM    Post subject:
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Matty is off of ritali per Neuro, even 5mg has side effets. She has suggested aderall, will have to go research that now. Here we go again!
Katie
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