DownSyn Forum

[kittycat3376]

I hope that it is obvious to the psych. now that he needs a med for his ADHD that is NOT also a blood pressure med. I've seen Tom chat about the med Mikey takes. Can't remember at the moment what it is, but you might want to ask him, then see if the psych. is willing to try it with Matty.

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[kittycat3376]

OK, I found it. If you look through Tom's posts in this topic. In one, he mentions that Matty and Mikey's behaviors are very similar, and in another he mentions the med that helped Mikey-Riperidone.

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[KatieB]

The Psych and I had a med chat, and he mentioned another med, not an a BP med. He thought, "maybe, just maybe, this would not really have any effect on the BP, and help him to be more in control" That didn't work. so, he suggested another med, and that he would call it in for us. Matty has been med free for 2 days, the first afternoon he was a little annoying, but not physically agressive, but yesterday after he stepped onto the driveway from the van, he did not stop for about 5 hrs, he had absolutly no control, every question was answered "don't know" and screaming "no". There was hitting, kicking, spitting, urinating on the floors, refused the bathroom, knocking over tables, throwing anything, pulled out the bed rail, and got it to the door in his room, "why Matty" "THROW" had the matress 1/2 way off the box spring "NO WANT" Standing on a chair near a big window, "break window" He defected on the floor, picked some up, threw it at me, tried to wipe his shi*** hands on me, laughing all the way, screaming, throwing himself on the floor, than rolling away. My husband than comes home from work, and then both kids got even more wound up, the house was a complete disaster from the wrath, got my sneaks, car keys, and said I needed a break and I left, gone for over an hour. I stopped at the CVS we use for the med that was called in, nothing was there, I wasn't happy. I'll research risperdal before I call the Psych back about the script that's either MIA or he forgot.
Katie

[KatieB]

The Psych and I had a med chat, and he mentioned another med, not an a BP med. He thought, "maybe, just maybe, this would not really have any effect on the BP, and help him to be more in control" That didn't work. so, he suggested another med, and that he would call it in for us. Matty has been med free for 2 days, the first afternoon he was a little annoying, but not physically agressive, but yesterday after he stepped onto the driveway from the van, he did not stop for about 5 hrs, he had absolutly no control, every question was answered "don't know" and screaming "no". There was hitting, kicking, spitting, urinating on the floors, refused the bathroom, knocking over tables, throwing anything, pulled out the bed rail, and got it to the door in his room, "why Matty" "THROW" had the matress 1/2 way off the box spring "NO WANT" Standing on a chair near a big window, "break window" He defected on the floor, picked some up, threw it at me, tried to wipe his shi*** hands on me, laughing all the way, screaming, throwing himself on the floor, than rolling away. My husband than comes home from work, and then both kids got even more wound up, the house was a complete disaster from the wrath, got my sneaks, car keys, and said I needed a break and I left, gone for over an hour. I stopped at the CVS we use for the med that was called in, nothing was there, I wasn't happy. I'll research risperdal before I call the Psych back about the script that's either MIA or he forgot.
Katie

[KatieB]

Matty has been on another med for a week. He is still doing the same behavioral probs, just isn't doing ti at 100 mph, about 98mph instead. The psych is on vaca until July 2, we're toen about waiting until he gets back, or call the covering Dr and tell him what we feel about this med and really doesn't seem to make a diiferance. I know these meds aren't the cure all and can't perform miracles for Matty, but hopefully there is something out there to give him a balance. Out of the 3 meds we have tried for him, clonidine was the best, but his BP couldn't take it.

[kittycat3376]

Man, sounds like you are still having a real tough time with finding the right thing for your kiddo. I hope you can get this all sorted out before fall and the start of the school year.

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[KatieB]

Thanks Christina, me too.
I spoke with the covering psych about this current med, he felt give it some more time, maybe we'd see some differance in behavior in 10 days, even though I told the Dr we have not seen any differance in the past week. Last night Matty was sitting in his dads lap, and he asked Matty a question, have a loud "no" and spit almsot in his dads face, and than laughed in his dads face. That ended that coversation, my husband didn't even say anything to Matty, got up and walked away. nice behavior. My Uncle came out from California for the past 10 days, just left today. He has seen pics of Matt, said hi to him on the phone, he finally saw him 3 days ago for about 3 hrs while at my sis. Matty was off the wall, I watched him leave my sis, he didn't know I was right behind him, yelling, defiant, pushing, demanding, etc. Today Ashley and I went to my moms before my Uncle left, he and I were chatting, this is the kicker, "wow, is Matty a handful, is there any medication he can be on to help him be more in control?" My Uncle had no iea that Matty was medicated for behavior, anxiety, ADHD, etc so right there, my Uncles comment is more validation that this current med is not working. Well, the pscyh is back July 2 from vaca.
Katie

[KatieB]

Matty was ok saturday, sunday was a completly differant story. We went to a sporting good store to look for a small portable gas grill, Matty deceided to go into destructive overload, he began pushing items of shelves, kicking thing off lower shelves, as we're moving him away he goes onto wanting to trash the next things in his reach. After only about 5 mins in the store, I took him out and back to the van, sicne my husband had in mind what he wanted there so I left. In the van, he threw a fit becasue I shut off the power to the electric doors, since all he wanted to do was to get out and bolt into a parking lot. He tried to kick, hit, spit, pull my hair, push, was screaming, attempting to throw his sisters book at me, this went on for a good 20 mins. I was sweating and in tears, it just really hurts when he laughs right in my face while doing those aggressive behavior. I was finally able to get him buckled into his car seat, and stepped out of the van for a breath and to wipe the sweat and tears. My husband and daughter finally come out, he sees me in tears, gets right in Mattys face and lectures him, he got the same reaction I did, Matty trying to kick him, spit, push from the car seat. We moved Ashleys seat away from Matt and he fell asleep shortly after. A combo of humidity and the burst of aggressive behavior. After we got home, I left for over an hour. Yesterday, he didn't have camp, sicne he vomited, don't think it was a bug, some yogurt was the culprit, had periodic dry heaves. Took the kids to the beach, he was so adamant about throwing mud at me, trying to scratch and spit at me it's very small, so I could see him and be a few feet away for a comforst zone to escape the wrath. After we got home, I called the covering Psych Dr and told him this med is not working at all, he acts the same as when he's not medicated, he's aggressive, defiant. The Dr said, "well, a parents defination of aggression is differant from a clinician point of view" so I asked him what his view was, and he named everything that Matty is currently doing, than the Dr was silent, what could he say? We had about a 10 min chat, and he finally said, take him off this med, the Pscyh Matty sees is back from vaca next week. We figure why medicate him, if he's having the same behavior while on it? We'll just move on to something else, and speak with the regular psych Dr when he comes back from vaca.
Katie

[mellysmom]

Hi KatieB,

I'm a newbie here, but I've been following your thread for the last few weeks. My little girl, Melissa, can be very hyperactive. She's not aggressive, just very busy and can get into a lot. She is also VERY stimmy. She loves to dangle anything she can get her hands on. LOL! We finally put her on the Feingold program last year. It didn't cure her, but it did help. (www.feingold.org) The Feingold program eliminates foods with artificial food colorings, artificial flavors, artificial additives and preservatives such as Bht, BHA,TBHQ. Apspartame is also a big no no. The other thing that is temporarily eliminated is natural salicylates. Apples, applesauce and apple juice are common trouble makers with some children. Take a peek at the web site and see what you think.
It's not as tough a program as I thought it would be. It's just a matter of changing name brands. For example... Bryers vanilla ice cream instead of Hood. Lays plain potato chips instead of another brand. Jif peanut butter instead of Skippy. Hershey's chocolate is a no no , because it contains vanillin. Use real vanilla extract when baking. Use real butter and whole milk. Minute rice and other real rice is okay. So are most of your Gluten free pastas, like Bionature, Tinkyada and Glutino. No apple juice, use pear juice or minute maid lemon aid. There are a lot of approved products that are also gluten free.
When you go to the Feingold web site, they will give you a list of approved foods to get you started. They will explain the stage one and stage two part of the program.( Part one eliminates all natural salicylates. Stage two slowly reintroduces the natural salicylates to see which ones you can tolerate and which ones you can't. )
To be honest, I think the reason why Melly's behavior is inconsistent is because we are still giving her some natural salicylates like strawberries and spaghetti sauces that don't "agree" with her.
My neighbor who has a son with Mental challanges/ autism does not follow the program to the T, but she does try to eliminate all the artificial stuff, the preservatives and any foods she feels creates negative behavior. She buys a lot of organic foods. She also has him on Risperdol. ( risperidone) So she kind of uses the Feingold program along with the medication. Her son isn't perfect, but the program and the meds do help him.
Melissa seems to have good days and bad days. We , too , have wondered if what she has is more of a sensory thing than adhd, so the stimulant medication NOT working kind of made sense to me.We have been trying Focaline on Melly for over a year. We used the extended release, 10 mg, which caused her to crash at the end of the day. She got cranky and mean. It also kept her up till 1:00 - 2:00 in the morning. Needless to say, that wasn't working for me. Then I switched her to the short acting. I gave it to her around 10:00 a.m. It works alright, but she still crashes at around 3:00 and then she's cranky for the rest of the day. I just don't know if it is worth it. ( I only gave her one dose , once a day. I wonder if our kids with ds metabolize the meds at a much slower rate.)
I'm really hoping and praying that for, your sanity and your son's, you will be able to find something that will help him. Do ask the Doctor about the Risperdone.
Good Luck to you.

Michelle
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Klonopin Rehab Forum

[KatieB]

Hi Michelle,
I'm also a New Englander, northeast Mass. Matty has Celiac so he has been gluten free for almost 2.5 yrs. He hasn't had asparatame, but the additives are something to think about too, he doesn't eat anything with apples, strawberries, no peanut butter, he has had Minute Maid lemonade before, only becasue our usual brand of Newmans was out. think I'll check out the site, thanks. When I spoke with the covering Psych, (Mattys was on vaca), he brought up risperdal and clonipine. We hope to find a balance before school starts. Matty will be seeing the Psych again at Childrens Hosp-Boston in about 5 wks.
Matty had a GI Dr appt a few days ago at Childrens-Boston. After we spoke about Mattys stomach which is Dr-patient chat., we spoke more about the ADHD, meds, behavior etc. This Dr and I chat as parents, since his son has ADHD, he has first hand experience of the wrath of Matty over the years during appts, and asked if he could call the Psych on our behalf, what behavior he has seen etc. I gave GI permission to do that and read the Psych note. This Dr has been so supportive through GI and ADHD, even though ADHD is not his speciality, he has been Mattys GI for 5.5 yrs, and he's my peer so that makes it easy to talk to him. Get off my soapbox, do some shopping for our VACA next week, YIPPEE!
Katie

[Tom]

Are you going to the NDSC conference? If so, Dr. George Capone from Johns Hopkins will be there and he is the expert on dual diagnosis. I think he is giving a preconference presentation but also he will be presenting a regular session. Talk to him if you can. If you can't I would seriously think about going to see Dr. Capone in Baltimore.

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Tom

Dad to Beth ( 20 ) and Mikey (15 - Ds and PDD-NOS)
My Blog - Random Thinking
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[KatieB]

I'll be at the convention for just tomorrow doing registration for Mass DS congress. Maybe Dr Capone will have some info I could take.
Katie

[mellysmom]

Dear Tom and Katie,

Can you share some of what you learned at the conference? I wish I could go. I get so bogged down with all the info I get on Autism. I don't know what to think or believe anymore.
The latest "great" cure for ADHD is L-theanine. (sigh) What does Dr. Capone think of all the natural remedies. Does he advocate trying herbal remedies or not?
It seems that no matter what I have been trying for Melissa doesn't really work. I'm keeping her on Feingold because at least that makes sense. Her pediatrician agrees. Artificial anything isn't real food, so why eat it? LOL I will admit, she does not seem to be nearly as hyper as she used to be. She still has her moments, but it is not as bad as it was before.
So anyway, I've tried quite a few things and for a long time with minimal success. She's not bad, just busy and on some days very demanding. Some of it is me, she knows I'm a push over. She doesn't test my 18 year old daughter the way she tests me. (smile)
Hoping you share what you learn at the conference.
Katie, I'm crossing my fingers for you . Hoping you get a chance to talk to Dr. Capone.

Michelle
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Baking Forum

[Amy]

I have a friend who's daughter is dual diagnosed. She's on Strattera and they have seen a huge difference. Takes a while for the meds to work. And it's not a stimulate.

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Keep the Faith, Amy
Mom to Kristin (26) Jessica (24) Rebecca (21) Rachel (16) Sarah (14) Hunter (11) & Austin (7) DS

[mellysmom]

I wanted to try Stattera for Melissa. The doctor gave me a sample. Melissa can't swallow pills so I opened the cap and put the meds into some ice cream. Oh, the look on her face when she tasted it. It tastes terrible. (smile) Some day, when she can swallow pills, we will try it again. I am so glad it works for your friend. That's great!
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[KatieB]

Hi Michelle,
I was at the convention this morning, but I volunteered for registration through Mass DS Congress. I wasn't actually signed up, just thought maybe I could grab some info on the way out, not. Matys Pedi suggested strattera a while back, and his Psych felt that Matty was beyond just ADHD meds and needed something that would also help with anxiety which Psych feels also contributes to some of the aggressive behavior, as his Neurodevelopmental feels the same too. Is Melly just a busy kid or have characterisitcs of ADHD, impulsivity, can't sit for more than a few mins, always moving, scattered, moving fast from one activity to the next without much accomplished, etc..etc? Maybe she doesn't test her sister becasue she knows she can push your buttons? Matty can be very demanding, space invader, close talker, won't take no for an answer.
Katie

[KatieB]

We finally installed alarms on the doors of our home after we came home from vaca, since the charming fellow deceided he wanted to take a walk down the street to the neighbors, ALONE, and tht's what he did by leaving the house. The cottage we rented had 2 heavy glider rockers, so we put them in front of the 2 doors there at night, as we would hear Matty wanting to move them if he tried to escape, hankfully never did. One thing that scared the S$%* out of us, there was a hurricane off of Bermuda, so at high tide there were some good waves at Cape Cod, Mass, and some places had a strong under tow. my husband is getting shells with Ashley and has the dog, I turned away from Matty for about .2 secs to pick up a shell, and he makes a run for the ocean, at high tide, in his clothes, I was up to my knees in the water grabbing him, clothes, sneakers, we were both wet, we were both crying when back on sand, he was gagging from salt water, which splashed him, in the face, and he didn't go under, he wasn't in far, but it could have turned into a very bad situation, no life guard sicne it was around 7pm. Matty recovered quickly and began throwing dry and wet sand at us, had enough by than and walked back to the cottage. After changing into dry clothes, his behavior just escalated from bad to extreme. We took seperate breaks to escape the wrath. His behavior did not stop until he fell asleep. He had other rough days, but not like the first one, agression was every day, we came home with small bruises and scratch marks all over our arms and hands. I sent an E mail to the Psych, he wants me to page him tomorrow and try to get Matty in before his scheduled appt next month.
Katie

[mellysmom]

Hi Katie,
Melissa can be very busy and she is a bit impulsive. She can stay on task when it is something she is interested in. She DOES know how to push my buttons. She does this by being very demanding. That's a behavior I know we can take care of by NOT giving into every demand. (smile) The biggest problem we have with Melissa is when we take her out to church or a friend's house, or a store, etc. I think she gets overwhelmed with everything there is to see. At church, if we put her in the nursery; she's fine. It's like she knows where her boundaries are. When she's in the sanctuary, it's like it's too large, too loud and too overwhelming.
We have been trying the short acting Focaline again. She seems to be doing a lot better on it. She's gained almost eight pounds since we tried it last year. I think the dose was too high for her last year. Now that she's a little heavier, she is handling it better. ( We'll see how she sleeps tonight.)
I hope things will get better for Matty.

Michelle
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Cancer - Uterus Forum

[KatieB]

Hi Michelle,
Matty does not go to church. Even in the kid room he yells, wants to run around the pews, wants to kick the pews, kick the and try to open the door that leads to the altar, wants to bang on the large window. throw himself on the floor, try to lick the floor, fights, etc. It's just a horror scene so he doesn't go. I spoke with the Psych fri, and we'll try another med. We would like to find a balance before school starts, hoping anyway. think most kids know what buttons to push. Where are you in New England?
Katie

[Tom]

Dr. Capone talked about a lot of things but the medication he says he has the most success with is Risperdal. Mikey takes that and we find it helps a lot.

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Tom

Dad to Beth ( 20 ) and Mikey (15 - Ds and PDD-NOS)
My Blog - Random Thinking
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[KatieB]

Matty had his first dose of abilify, think it maybe in the same class of meds as risperdal. We were crossing our fingers this would be the 4th and last med to try. I'm on the way to get Ashley, drive by Camp, and the Camp RN calls. She has taken care of kids on abilify and felt that Matty was having side effects at the lowest dose. His teacher, aid, RN, other staff were quite concerned over his change. Matty was in such a fog, he is quite pale, but was so pale that everyone was quite concerned, he wasn't responding as usual, vomited, balance is a little off normally, but quite off, he was sweating heavilly in the shade and A/C of his cabin, wouldn't eat or drink, this is what I have never seen: he was sitting at the picnic table with his teacher, and I, and he closed his eyes, and began rocking he wouldn't stop until I physically intervened, he doesn't rock normally, he was too weak to walk. I usually don't get scared about much, nervous maybe when it comes to Matty and his medical issues, but today I was really scared. I started heading to the local hosp ER, and he started coming back, I was debating to call 911. Since his mental status was way off. He was at the lowest dose too. He's just wiped, but almost back to himself.
Katie

[KatieB]

Spoke with the Psych, he is very concerned about the side effects and change in mental status. this morning into early afternoon. Matty is just about back to himself, nausea and vomiting have subsided, he's taking fluids and keeping them down. I really think it was side effects and not a GI Bug. Matty is off of abilify per Psych.

[momofrussell]

Wow, that sounds scary those side effects!!!

A.

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DSAGSL 2009 Buddy Walk

[Nicola]

I have followed this thread over time and although my son with ADD is very mild in comparison I have learnt a huge amount over time about food additives, as well as natural chemicals in food that can really badly set kids off. I think you may really benefit from looking up the "Failsafe" website.
http://www.fedupwithfoodadditives.info/
They have had enormous success in changing children's behaviour by removing all colours, preservative, flavour enhancers and natural amines and salycilates from children's food. There is a book called 'Fed-up with ADHD" that would be and enormous help.

Michelle,
If Melly is intolerant to salycilates then spaghetti sauce, strawberries and even mint toothpaste are like poison to her body!! They could be having a huge impact on her behaviour.

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Mum to Brendan 18, Chiara 17, Kiernan 15, Aidan 13, Lachlan 12, Gianna 10 (DS) and Sienna 8.
"This then is what Yahweh asks of you: to act justly, to love tenderly and to walk humbly with your God."

[KatieB]

Yes, the side effects were quite scary, they started in about 2.5 hrs.
Nicola: I'll check out that site, thanks.
I still get teary thinking about yesterday, and thank God Matty is back to himself, and went off to Camp with a smile on his face. I was thinking today, IF or WHEN we deceide to try for another med, I am NOT going to have Matty home. I would want him admitted into the hospital, to the Cardiac ICU, (Cardiac history) vitals, o2 sat monitored, and an IV placed, just in case he vomits and would need fluid. After what he has been through, it's just not safe anymore.
Katie

[mellysmom]

Hi ,

Katie, I'm so sorry to hear about your day with Matty. Poor little guy.

Nicola Melissa does seem to get a little bonkers after eating strawberries or spaghetti sauce. It's frustrating because she is so sensitive to so many foods.

Michelle
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Slovenian Forum

[KatieB]

Seems like trips for Matty will be getting less and less, unless we are outside where we can be distant from people. We deceided to take the kids to see Wall-e, the Disney robot movie. After we sat down, Matty seemed ok for about 15 mins. Until he felt the need to want to kick the guy sitting in front of him in the head. He came close, and was getting loud. so he and I moved and sat up in the last rown away from people, since the theatre was only about half full. I was able to chat with Matty about Shrek and Ray Romano for a while, and that he had to watch to see them in the movie, they're not, but an ok stall tactic for him not to escalate. He had had enough, and began taking off his shoes, and wanting to throw hem, guess my reflexes are still good, becasue I was faster getting them from his hands than he could throw. My husband heard the commotion, and he and my daughter sat with us, since I had previously told him to stay with our daughter so she could enjoy the movie in peace. The last straw was Matty began to spit at my husband and I, began to have accidents in his pants, this is disgusting, and removed stool, and wanted to throw it at the movie goers. My husband wrapped his hand around Mattys, still holding poop, and we're gone very quickly, and my daughter and I finsihed watching the movie. We get out, my husband is in a tizzy, poop smeared around the van, Matty excessive laughter, screaming, yelling, spitting. At least he was able to buckle Matty in the car seat. This is getting mroe and more difficult, we don't ignore what he does, he gets a gazillion timeouts, have him clean up his accidents, even had him cleaning the window of the van yesterday, had him change himself (with help). We feel like we are getting absolutly no where, his aggresion is everyday, can be destructive everyday, can be mean, be excessive giddy one minute, crying the next. Had had serious side effects from 5 differant meds, the school behaviorist plan has not worked yet. i know that meds and behavior plans aren't the cure all, but things most day, just go from bad to worse, everything is a battle from wearing his glasses, to brushing teeth, getting dressed, 1 eyedrop at night. In 3 wks is Mattys Psych appt, and I'm writing down everything that happens, and what i think, what we think needs to be done, and give us some rhyme and reason other than DS, we all ready know about the differant wiring of his brain involving ADHD, mood swings-bi polar perhaps? Today is another day, could be worse, and we're going to the beach later.
Katie

[kittycat3376]

Have you ever tried a weighted vest? They were mainly created for austistic children, but I've heard they are a very good calming technique for some kids with ADHD and other issues. No worries about side effects on that one, so it might be worth a shot.

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[KatieB]

Camp for Matty ended last thurs. He has been so extremely difficult for the past 5 days. I was in need of a break saturday, left the kids with my husband, deceided to go to Boston and just walk and walk. I cried in the garage of the subway station, felt better, and than walked about 5 miles. Before I knew it I was by the Seaport trade center. Felt good just to be alone. Matty has been in time out about 30x a day, not exagerating, he doesn't care, just for us to take a breather and clean up the urine and/or poop he feels to go on the floor, smear on walls, doors, or try to get anyone within his range. He will go back to wearing pull ups at friends/family homes, as he thinks all rugs and furniture are fair game for his toilet. Today he has been in his room for time out about 9-11x, and it's not even 11am. He has all ready done the liquid poop artistic work, destroyed 2 lamps, pull ups strewn around his room, has urinated on rugs, spitting at me, scratching my legs, pushing. his room has been completly trashed repeatedly. Most of his things are out of his room. i'm buying a bedroom lamp that wil be mounted on the wall. I'm just relieved that he didn' bite into the cord of the lamp that was plugged in that he wrceked, right when I was there. I asked my husband if he had pondered another med try, he said the thought had crossed his mind since he was the brunt of the agression for most of the weekend. when Matty sees the Psych in 2 wks, I'm going to mention how i feel about Matty being admitted to the hospital for anoter possible med try. Guess I'll get out more air freshner, our family room smelss like a barnyard, and our van smells like a urinal. Can't wait for school, we're one of the late ones, Sept 3.
Katie
Katie

[mellysmom]

Hi Katie,

Hang in there. ( easier said than done.) There HAS to be an answer for all of this and help. Praying that the right medication and helps are found. Consider yourself hugged.

Love,
Michelle
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War Risk Insurance (Aviation) Forum

[KatieB]

Matty has a Psych appt at Chilldrens-Boston next tues. I;m making copies of the a behavior journal I have kept since last appt. about 10 pages, of horrendous behavior. We're going to an awesome zoo in Rhode Island tomorrow, so hopefully he'll do some walking and get tired. His behavior in the past week, was alot of yelling, minor aggression of pushing. The past 2 days he has started to escalate again, yelling, pushing, pinching. We just came home from a birthday party, Ashleys friend with DS turned 8, but the mom knows Matty and invited him too. He did ok, a few pushing episodes, and some yelling, but not too bad.
Thanks Michelle
Katie

[KatieB]

Matty has been his agreesive, destructive, defiant self. We went to a zoo last week, he sat in his stroller the entire time, asking to go home. He got out only once to see the new Elephant area, the Elephants and Giraffes are only about 6 ft away, beautiful animals. We went to the beach a few days later. A friend called, and we made an improptu trip. Matty used to ask for this friend and her sons alot, but now all he wants to do is "go by selves" or "stay home" He barely interacted with my friend or her 2 boys, a cling on to me, with hitting, pushing, spitting, real fun day. Today Matty had another Psych appt. Spoke about meds that have come and gone, agressive behavior, I brought up bi polar, which Dr didn't think so, but he had a look like maybe it's something to think about. I also told him we were nervous about starting another med becasue of the side effects last time, which Dr felt was an allergic reaction. He gave us a script for risperdal, and go back in 2m. I think the Dr is getting puzzled about Matty, he didn't say so, but had a look of being puzzled, like when someone is trying to figure something out. I felt hustled out of that appt, didn't get to say all I wanted, so I'll send him an e mail. When he asked where I thought we were at, I told him "we're at no where, have tried 5 differant meds with all side effects, he's getting more agressive and bigger, heavier, things have not gotten better, just worse" silence, until Matty threw a toy at the large glass window with the great view of Boston. So, I'll have a chat with my husband about risperdal. I am scared because of the reaction to abilify, and the drugs are in the same class.
Katie

[kittycat3376]

KatieB wrote:

I am scared because of the reaction to abilify, and the drugs are in the same class. Katie

Can the psych put him on a very low dose for a week or so to rule out allergies? Then, if there is no allergy he could up the dose. At least that way, if there is an allergic reaction it wouldn't be likely to be as severe.

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[KatieB]

Thanks christina
We deceided to give risperdal a try, at a very, very low dose. Matty only had about 6 episodes of minor agression yesterday, only tried to lave the back yard 1x, but we were all outisde, and watching him so he coouldn't have gotten far anyway. Today, he has had some episodes of pushing, defiance, but has been tolerable. Today, the kids have open house at school so I'll be speaking with his teacher and hopefully the SPED teacher. Yes, we're some of the late ones that don't start school until tomorrow.
Katie

[Tom]

KatieB wrote:

Thanks christina We deceided to give risperdal a try, at a very, very low dose.

Mind if I ask the dose?

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Tom

Dad to Beth ( 20 ) and Mikey (15 - Ds and PDD-NOS)
My Blog - Random Thinking
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[momofrussell]

Yes, I hope the Risperdal works. We have had to change Russell's dosage a couple times now and need to visit the doc next week so we can talk about his most recent dosage change. (although if you asked what the dosage mg's are I couldn't tell you LOL)

You giving it to him in the AM and PM? We started just at night and then did AM and PM. We had to adjust once with that but it works well giving Russell an AM and PM dosage.

Tom, what dosage and how often for Mikey?

A.

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Adrienne - mom to: Regan 17, Russell 12 DS, Autism, Visually Impaired, Reece 10.

DSAGSL 2009 Buddy Walk

[Tom]

Mikey is supposed to get 2mg in the morning and 4mg at night but I think he does better when we switch them around.

_________________
Tom

Dad to Beth ( 20 ) and Mikey (15 - Ds and PDD-NOS)
My Blog - Random Thinking
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[momofrussell]

I'll have to check my dosage when I get home. In the beginning we were doing a full pill AM and PM and even after it leveled out he was a wee bit more zombie-ish then we wanted. So I cut it to a half pill AM and PM and THAT did the trick. Now we feel he needs more in the PM so we do a full pill at night, but a half in the AM. Same concept to what you are doing. We feel this is working now.

A.

_________________
Adrienne - mom to: Regan 17, Russell 12 DS, Autism, Visually Impaired, Reece 10.

DSAGSL 2009 Buddy Walk

[KatieB]

Yesterday the kids had school open house. Matty was quite difficult, pinching, scratching, pushing, yelling, refusing to walk. The "carry me" is getting old, and he's getting heavy. Just what I want to do, carry a heavy, agressive child. We finally make it to his class, the teacher had things set up for the kids to do, coloring, blocks, see where their desk will be, etc. Matty cleared off the school stuff off his desk, laughing, charged at a large wooden easel, caught him beore he knocked it over, and than flopped on the floor when I grabbed him by the shirt. Tried to throw blocks, all while laughing and screaming, real nice first impression. I'll be having a meeting with his teacher maybe next week anyway. The school was so crowded yesterday, that we had to park about 1/4 mile away, with him whining and trying to run out in the road I finally caved and carried him most of the way. School started today, and i'm praying he has a good day, and that I don't get a call from the Principal. Matty had an appt with his Genetic-developmental Dr, she's great, I really like her alot, and she has been seeing Matty for about 3 yrs. She has seen and has been in the wrath of Matty numerous times. We talked about the Psych appts, the numerous meds, all of Mattys med, psych, social issues. I brought up the bi polar to her, and she said "let me think about that, can correalate with ADHD, the med can be used for that or the agression-ADHD combo, mood swings, how Matty acts, the Psych has only seen Matty 2x, and has seen the bare minimal of his behavior, I think you're probably right" She asked me how I felt about Matty most likely being bi polar-ADHD-Sensory. I'm not happy about it, but his behavior probs are increasing and this has been going on for 2 yrs, now we probably have found a reason for his behavior, not just ADHD and I'm ok with it. I told the Dr about the site i found through Mass General Hosp here in Boston, and how the bi polar-children was 98% Matty, and was stunned to read, described him almost perfectly. The Dr was so supportive. It was a good appt.
Matty is on 0.25 ml, in am.

[KatieB]

Matty had a dentist appt, and 6 x rays of each knee, done at Childrens-Boston. The adentist appt went ok, as for Matty being on risperdal now, and last year at this time he was med free. We first get in to the dentist waiting area, he knocks over multiple stacks of baseball cards at the check in desk, than knocks over all of the privacy info brochures, laughing all the way, tugging on my shirt, stretching it pretty well. Threw himself on the ground, laughing hysterically. We got into the dental area, a box of medical gloves were within his reach, he was so fast, emptied out about 3/4 of the box, threw them in a sink, turned on the sink than was trying to splash everyone near him. Lasted about 12 secs, to get him away from the sink, shut off the water, he lunged for the tray with the dental tools, which I even asked to move farther away, he got to them anyway. He was just so fast, trying to destroy anything within his reach. finally he calmed down for a few mins and did the dental check up.Felt that Matty is a strong teeth grinder, becasue his 2 fromt teeth and the ones next to them are very grinded down, has alot of overcrowding at his lower jaw, 6 yr molars aren't there, yt maybe on their way since Matty put his thu,mbs in his mouth where his molars are, he is missing a few teeth in the back, had no idea sicne we can't `usually get back there to look anyway. He has no evidence of any permanant teeth trying to come in, time will tell. One good thing, he has no caities, I was surprised sicne our teeth brushing with him is a 2 per day battle. his teeth were counted, and cleaned at the same time, good appt, and they are so nice.
X rays was somewhat of a battle: Matty yelled and cried alot, his moods quickly changing. After the 4th set of knee xrays, he told me he was wet, so I changed him quickly, fortunatly had a pull up on over undies, took off both of those, he grabbed them from me, and told the x ray tech "catch" Just what he wanted, but I caught them first, luckily no poop was in them. The risperdal made a slight differance than last year, Mattys behavior was just less severe and extreme. Back to the hospital fri for the Ortho appt, see if that Dr notices any differance, he has been through the wrath alot over the years too.
Katie