DownSyn Forum

momofrussell · Posted: January 11 2008, 3:11 PM Post subject:

Good luck Katie! Geez...what a process right? I know my oldest was on 3 or 4 different meds and in the end after about 2 yrs of trying to make things work and trying to find "the right" meds... we choose to not use it. She doesn't have DS, just the ADD part. Wink

I do have to say that Adderal helped the best but it exaserbated some other issues which I read later can happen... ODD (defiant) type issues and it concerned/scared us.. so we had to take her off. If that wouldn't have been the case she would have stayed on the Adderal.

A.

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

DSAGSL 2009 Buddy Walk

LeeJo · Posted: January 12 2008, 4:18 PM Post subject:

Katie, our doc suggested Focalin for Alex, but we are waiting to start it until after his sleep study and any treatment that would indicate so we can get a good baseline with adequate sleep.

The way our docs explained it, the next generation meds have been "cleaned up" and have fewer chemical side effects than the older meds, ritalin being the oldest. Hope the new meds work well.

_________________
Lee, mom to Alex 6 DS, ADHD, Ben 2 1/2 DS, Hirschsprungs/HOH (adopted), Hannah 9 typical, Chelsea 18 typical (adopted)

http://thesmugglerschmoos.blogspot.com

KatieB · Posted: January 18 2008, 9:22 AM Post subject:

Matty has had a ritalin break, I'm kind of apprehensive about Aderall. I'll E mail Neuro this morning about how we feel, but than again Matty was such a PITA this morning with his obnoxious behavior of hitting, spitting, yelling, throwing himself on the floor too many times to count, trying to kick us getting ready for school was such a battle. He barely had any attention span at all.
Katie

KatieB · Posted: January 18 2008, 9:24 AM Post subject:

A,
Did Regan have any side effects from the Aderall?

KatieB · Posted: January 19 2008, 7:53 AM Post subject:

Heard back from Neuro. either we could try other stimulant meds used for ADHD, since that is all she prescribes, or she has also suggested seeing a psych that has more knowledge in the use of other meds used to deal with ADHD other than stimulants. I think I'll call the Neurodevelopmental and get her input on this too, this Dr has seen Matty in action. I could also call the DS clinic coordinater at Childrens Hosp-Boston who had contacted a psych there on Mattys behalf before, or the Psych that had conducted Mattys Neuropsych test and get his opinion. Geez

KatieB · Posted: January 30 2008, 2:34 PM Post subject:

Had another meeting today with the Pedi about the Neuro-psych eval, and how everything else is going, nice to have a Matty free meeting. got on the ADHD subject, he has prescribed Strattera and the kids who went on it haven't had any side effects that he's aware of, think it would be a med for Matty to try. Matty hasn't been to the Pedi for 4m, wow, seems much longer, only Sept. His behaviour can be horrendous and physically tiring lately.

KatieB · Posted: February 01 2008, 9:23 AM Post subject:

Had a meeting with Neurodevelopmental yesterday. I brought up the strattera suggestion from Pedi and Neuro, and that Neuro only prescribes stimulants, if we don't want to go that route, there's pharmoppsych, Psych that has alot of expertise in other meds for ADHD, try that route. Pedi felt that was a very good direction to go in, as does ND Dr. Neurodevelopmetal wants labs drawn for CBC and liver before any new meds are started, and to have Matty watched very closly for any med side effects through the Psych and us. ND Dr will contact the Psych and the DS clinic coordinater at Childrens-Boston, the same one that Matty was reffered to last fall since alot of the kids with DS get reffered to this Psych. Get a behavior thereapist into play through the office where Matt had the neuro-psych test done. YIPPEE! Add spitting into Mattys behavior repratoire.

momofrussell · Posted: February 03 2008, 7:48 PM Post subject:

Sorry I didn't come and see your question sooner. Wink

Adderal was a love/hate thing for us and Regan. The first doc we went to DX'd her with ADD and ODD (defiant disorder) and we started her on Adderal. That was the first med we used. We went from a very low dose and kept uping it. I want to say we started at 5mgs? and went all the way up to 25mgs? We did see a great difference with focusing, getting homework done, ect around the 15 mg mark but we were still trying to get it to that "perfect" mark and everytime we kept upping it, it helped the focusing and school but it made the ODD stuff worse and worse and worse. It got to the point where we were concerned for her safety and ours Sad

She was in the 6th grade and I am sure the new hormones weren't helping either. We finally had to trash the Adderal idea. Sad

I then read later that some of the stimulants, like Adderal don't fair well with ODD type behaviors in children, which made sense with Regan. We tried Straterra and Welbutrin after that and we didn't see much of anything with those... so we opted for no meds.

I wish she wasn't one to get crabby and aggitated and "defiant" at home by nature or the Adderal would have been the ticket for us!

A.

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

DSAGSL 2009 Buddy Walk

KatieB · Posted: February 06 2008, 2:05 PM Post subject:

Regan still med free? Makes you wonder if ODD goes along with her age, the "know it all age...whatever" Than again, if a med could be found to help keep her safe, find a balance somewhere right?
Matty is still med free, but the SPED teacher told me that she feels that he is getting very comfortable at school, since he pulled a swift one that he does at home, got a mouthful of water, spit it out on the class table, and his work, laughed all the way to get get things to clean up his mess. Maybe it's tme to look into the med route again. Haven't heard from any Dr's recently about this either, good or bad thing...not sure.
Katie

momofrussell · Posted: February 06 2008, 6:04 PM Post subject:

Regan is still med free. Even though we did see some ADD success with the Adderal, I personally am not convinced she has ADD... but two different docs in that field tell me otherwise LOL Who knows. I know the ODD part of her....she has been like that since she has been little but it's selective (i.e. at home with us not at school)... the first doc said it can be..second doc said it usually isn't so the second doc didn't give us the ODD DX. Either way...she is defiant with me..does that count? LOL

A.

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

DSAGSL 2009 Buddy Walk

KatieB · Posted: February 15 2008, 9:46 AM Post subject:

Yesterday I received a post appt note from when I had a chat with the Neurodevelopmental about 3 wks ago, not good. She wants to see matty in 2m. The usual stuff, his safety, lack of having any concept of, the behaviour that has been gone for quite sometime, seeing a Psych, meds, labs to be drawn, intensive behavior thereapy needed, and the list goes on. She also noted a Christmas party that we attended, that was affliated with the Dr office, she was there, was a family affair. she mentions that she was observing Matty there and his behavior, stop, drop, flop, yelling, trying to run away from us, pushing. I thought he wasn't that bad there, had no idea that the Dr was watching Matt from a distance. "His overall level of functioning well below average" I knew that, but reading it again is tough sometimes. so, she wants to see Matty in 2m. Now I have to call the Pedi office to get lab orders, have his GI order for Celiac lab done again, get all of this blood done at once. I hope there will be alot of staff on to help with this labs being drawn, Matty is quite the fighter, very strong in those instances, and don't want anyone hurt.
Katie

momofrussell · Posted: February 15 2008, 1:45 PM Post subject:

Well, yes, the news and that note wouldn't make me happy either Sad

I am sorry. I am glad though the doc IS on top of it!

Keep us posted!

A.

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

DSAGSL 2009 Buddy Walk

KatieB · Posted: February 27 2008, 3:05 PM Post subject:

Yesterday I brought the Neurodevelopmental note to the Pedi so he could order the labs she wrote in case he wanted to do any add on's when Matty gets a blood draw. I'm thinking that next week i'll have that order, and ask my sis to come along with me on one of days off to help hold Matt down. I finally called to make an appt with a behavior therapist, it will be Mar 15. He was so out of control yesterday, rude, defiant, obnoxious, yelling, screaming, trying to destroy things, had to clear off the counters, I keep things out of his reach, but he was actually getting the bathroom stool so he could reach objects on the counter to break, throw, destroy, etc. All the yelling and screaming, the drop and flop. most of this behavior he would do it while laughing in my face. He dumped dinner on the floor, and than threw the bowl, I was faster and was able to get the peices off the floor. I put him in his room for time out at the point, didn't hear a thing except for him saying "be good" went to open his door, and looked like a demolition crew had been in there. All of his books, clothes, socks, wipes, pull up's, were strew all over the room, he deceided to play with some feces too, and that was all over too. I just stood back out of his room, closed the door again, got cleaning supplies, and cried. Days like that make me feel kind of a failure when we have a day like that.
Katie

KatieB · Posted: March 06 2008, 2:41 PM Post subject:

This morning, Matty had a GI appt, this Dr has been seeing Matt since infancy so he knows him quite well. Once in the examine room went was off the wall, completly out of control, destructive, yelling, being physically aggressive to me as one point the Dr and I switched seats and he was next to Matty. Other than his dad, this Dr walks on water, Matty has been asking when the appt is, askes to see this Dr alot, try to fake stomach aches for me to call him etc. Matty was screaming at him today, "leave lone, no like you, hurt you" So finally we swtiched seats again, and Matt bit me on the arm, I was nearly crying when the Dr jumped up and gave Matt a lecture, which didn't matter anyway. He was too out of control to care about any lecture and the Dr knew it. After he said Matty is fine from a GI standpoint, we talked about ADHD, seems his son has it and he wanted to talk parent to parent not just Dr to patient since it's not his speciality. I told him about the possibility for a psychopharmocology referral for other meds than stimulants, and he completly agreed and wants to try to help us from a parental view. I thought that was nice, and to call him if we wanted to. Labs were drawn yesterday so we can get meds going again, I E mailed the Neurodevelopmental about the behaviors from hell for the past 1-2 wks, and wanting a refferal to see a certain Psych from childrens hosp that we have all ready spoken about. Glad Matty is at school right now.
Katie

KatieB · Posted: March 17 2008, 12:11 PM Post subject:

Matty had a behavior therapt appt 2 days, ws just awful. I felt like I was following a demolition crew and picking up after them. He was so out of control, physically agressive, yelling, screaming, spitting, hitting, trying to kick, scratch, pinch, etc. I really tried to hold myself together, but ended up crying. someone else to see Matty in action. She wants to get the ball rolling and get us some help through DMR, she wants to get someone or herself to observe Matty at school and at home, get a behavior plan in place too. I have no idea why he went nuts, it's not a strange place, it was where he had his neuropsych test, he remembered where the childrens area was with some toys, and said hi to the Psych that did the test by his last name when he said hi to him. That it's for that, will send an e mail to the DS coordinator at Childrens for the Psych that came reccommended last fall, and see if we can get him to see this dr, sicne he sees alot of kids with DS.
Katie

EAS1971 · Posted: March 18 2008, 6:42 PM Post subject:

Katie,

I had glanced at this thread a few times, but never read all the way through it before. It's very interesting to me!! What you describe is SO Oliver! The difference is, Oliver has been the way he is since birth. Or, to be honest, since conception!!! When I was pregnant, those kick counts were a joke. He'd do the 10 kicks or whatver it is in like a minute...and that was 24/7!!

Oliver can be IMPOSSIBLE!! He is at his worst when he's at the doctor's office. He gets scared, nervous, worried...and that brings out the worst in him. At those times, he is truly uncontrollable. He climbs, jumps, throws, ignores adults, will not listen, won't cooperate, won't even look at anyone else. He's just impossible.

But at home, he's just...very very busy. He is nonstop on the go. Doesn't listen the best. But mostly, he is just extremely active. But at least at home he's fun, funny, entertaining, sweet, and lots of other good qualities. But when he's acting out at the doctor or at school, those good qualities can go out the window!

Thanks for sharing all the information about your son. I wonder how many, if any, studies have been done regarding kids with DS and ADHD?

Have you tried any of those diets that they claim can help ADHD symptoms? I haven't. And I never really thought they could help. But I'm now considering researching them and giving them a try. My son does, I believe, need medication to help him out. He's capable of so much, but held back by his attention/hyperactivity difficulties. But so far we keep being told he's too young to be diagnosed with ADHD. To me, there is no question. There never has been. So if diet could maybe help in the meantime, then I'm considering giving it a try.

_________________
--Beth
Mom to Oliver, 5 (DS, ADHD)
and Sebastian, 4

KatieB · Posted: March 19 2008, 9:50 AM Post subject:

Beth,
Matty was diagnosed April "06 with Celiac Disease, as for what I have heard or read about being gluten free may help relieve some of the probs with ADHD, no effect on Matty at all. not saying that it won't help eleviate some issues with ADHD with other kids. Sounds like Matty and Oliver act the same at the Dr office, except Matty loves going to the hospital satellite clinic. He gets doted on, hugged, hangs out with the staff, sung to, ask for the specific Dr he will be seeing, and than freaks. We're frequent flyers there so it's not a new place by any means. He just basically wants to destroy the exam room. Matty has alot of good qualities too, but lately the bad seems to outweigh the goodness in him.
I was psyched (no pun intended), I heard from the DS coordinator from Childrens Hosp and she will send an e mail to the Psych that I wanted to get Matty in to see last fall. she thinks the Dr is out of the county but will send him an e mail and get an appt ASAP. I was happy about this too, Mattys GI called yesterday about labs for Celiac, that suck, but he also wanted to check in about Matty and the ADHD stuff (again), asked how things are going, hear from the DS coordinator about possibly getting Matty in to see the Psych. I wouldn't be surprised if the GI Dr took it upon himself to call on Mattys behalf.
Katie

KatieB · Posted: March 28 2008, 1:35 PM Post subject:

Yesterday got a note from school that Matty had to leave art class becasue of "too much nonsense, and non compliant behavior I asked Matty about it "big time out, no art" I sent a note today asking what he did. One part of me say oh no, please don't start on this obnoxious behavior carry on to school, because at school they rarely see any behavior probs, just some needed re direction. On the other hand, at least they saw some of what I have said about Matty.
.

KatieB · Posted: April 02 2008, 1:40 PM Post subject:

I'm psyched (no pun intended), just heard back from the DS coordinator at Childrens-Boston, and she said the psychiatrist that I wanted would see Matty. She will call the Dr's scheduling person in the morning to get Matty the first available appt. Know it could be a while, but at least he's in. YIPPEE!!
Katie

KatieB · Posted: April 03 2008, 1:25 PM Post subject:

Heard back about an appt with the Psychiatrist from Childrens, Matty has an appt May 30, thanks to a cancellation and DS clinic coordinator calling at the right time. Otherwise, this Dr is booked way, way out.
Katie

momofrussell · Posted: April 03 2008, 2:03 PM Post subject:

GOOOOOOOD LUCK!

A.

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

DSAGSL 2009 Buddy Walk

KatieB · Posted: April 04 2008, 4:42 PM Post subject:

Thanks A.
Matty had an Ortho appt today, as usual he was charged. Mattys knee caps have been nearly dislocated for quite a long time, but we're still holding off on surgery as long as possible, if it comes to that. Ortho wanted to watch Matty walk, knows his behavior so well, that he had him walk towards a dead end of the hallway, since he would bolt. Dr felt that if Matty had to have knee surgery, he would need to be medicated and behavior under control, sicne he feels Matty would most likely re injure himself post op.
Katie

KatieB · Posted: April 09 2008, 2:01 PM Post subject:

I picked up a copy of the notes from the behavior appts, since a school meeting will be called when i received these. States: client was extremely disrespectful and defiant, he spit at myself, and his mother when she tried to set a limit, knocked over the chairs, and threw toys around the room. consult is reccommended to re start medication again as ritalin was not effective, behavioral consultation, psychaitric consult reccommended. Seeinga a psychiatric consult in print and checked off for your child hurts, even though we're doing the right thing becasue Matty has an appt with a Psychiatrist at Childrens Hosp- Boston the end of next month. I heard from the SPED district person yesterday regarding other reccommendations from the behaviorist, I really thought she was going to say "can you call your insurance so the town won't have to pay", or something to that extent. she was quite supportive on the phone, see if that is still there when a meeting will be called. I'm going to take all of Mattys Dr's notes that comment on his behavior, copy and highlight those parts, dating back as far as I can. I would like to bump into the SPED Director or SPED district person in a store, since they live here in town and hope that Matty would be in a full blown behavior meltdown. the only time. Guess I should go call her.
Katie

KatieB · Posted: April 09 2008, 2:16 PM Post subject:

I picked up a copy of the notes from the behavior appts, since a school meeting will be called when i received these. States: client was extremely disrespectful and defiant, he spit at myself, and his mother when she tried to set a limit, knocked over the chairs, and threw toys around the room. consult is reccommended to re start medication again as ritalin was not effective, behavioral consultation, psychaitric consult reccommended. Seeinga a psychiatric consult in print and checked off for your child hurts, even though we're doing the right thing becasue Matty has an appt with a Psychiatrist at Childrens Hosp- Boston the end of next month. I heard from the SPED district person yesterday regarding other reccommendations from the behaviorist, I really thought she was going to say "can you call your insurance so the town won't have to pay", or something to that extent. she was quite supportive on the phone, see if that is still there when a meeting will be called. I'm going to take all of Mattys Dr's notes that comment on his behavior, copy and highlight those parts, dating back as far as I can. I would like to bump into the SPED Director or SPED district person in a store, since they live here in town and hope that Matty would be in a full blown behavior meltdown. the only time. Guess I should go call her.
Katie

Tom · Posted: April 12 2008, 8:15 AM Post subject:

Saw Dr. Capone at a conference yesterday. He said that drugs like Ritalin are almost always a mistake unless you are POSITIVE that you are dealing with ADHD and not ASD. In his experience they almost always make kids much worse. He strongly recommends Risperidone and has found that starting with a low dose like 0.5mg and working up to 4mg can make huge improvements in behavior. It worked for Mikey.

_________________
Tom

Dad to Beth ( 20 ) and Mikey (15 - Ds and PDD-NOS)
My Blog - Random Thinking
Find me on Facebook
Find me on Twitter as tgpaul

KatieB · Posted: April 17 2008, 10:24 PM Post subject:

Tom, interesting info, sounds like a good conference.

Matty was quite difficult about leaving our town Police Dept for child safety day last saturday. He was at the point "I'm not leaving, you can't make me, and I will throw myself on the ground of the driveway of the Police Dept. Before that time, he was yelling "kick cops, kick police, kick jail" They really couldn't understand him anyway with the yelling, and Matty just ignored them sounding like a broken record. He was only quiet while chowing on popcorn he got there. So as to leave, we eventually had to each take an arm and leg and physically remove him and walk up the driveway. How much longer for the Psychaiatric appt May 30? I do have to say, he did great at his friends b'day partys sturday and sunday. Mood du jour I guess. Today after school, I didn't have to do battle about numerous things, had to wipe the tears, almost everything he wanted or asked for, sent him into a crying, sobbing fest, he was so dramatic and sad. As I said, mood du jour.
Katie

swanny297 · Posted: April 28 2008, 1:51 PM Post subject:

Evan went through some testing and was diagnosed with ADHD - we have him on Focalin XR - 10mg, what a huge improvement.

He was on the borderline of having to attend summer school in order to mainstream into kindergarden next year because his behavior was terrible. Since we have started him on the medicine (beginning of Feb), what a turn around, he is doing awesome in school, he can focus, great progress reports - we are actually looking forward to his IEP on 5/8 - we give it to him in the morning so it lasts during school - and in the evenings it has worn off.

Because it is a stimulant it can have some side effects - loss of appetite, dry mouth, sore stomach - but we have only seen dry mouth and chapped lips a few times. His appetite isn't as strong when he is on his medicine but he will still eat and drink - and in the evenings his appetite is huge. We were also told by our pediatrician that the medicine would produce the opposite reaction if your child didn't react to it properly, in plain words he said you would have super kid running around your house.

KatieB · Posted: April 28 2008, 2:06 PM Post subject:

I'm really happy for you that focalin worked, and that your son is doing so well on it. Matty sounded like your 2nd paragraph, was him on ritalin, weight loss of 7 lbs in 10 days, coordination was off too. We'll be seeing a child psych next month and see what the med options are.
Katie

KatieB · Posted: May 02 2008, 8:45 AM Post subject:

Had a meeting with the SPED teacher 2 days ago, even though it's towards the end of the year, Mattys true behavior colors are starting to show. We don't want him to act up at school, but at least they're starting to see what we have said, since that's the ONLY place he somewhat behaves. My neice is having her first communion tomorrow morning, would like to take Matty, but I fear he would be so disruptive and yell alot. so he won't ruin the service, he'll stay home with his dad.
Katie

KatieB · Posted: May 05 2008, 1:22 PM Post subject:

Filthy disgusting new habit...be forewarned before reading.....Matty is trying to get into more trouble everyday. Yesterday, we were all home and he comes up to me "drank soda" I figured that he had gone to the frig and dumped ginger ale all over the kitchen floor. Went to the kitchen, no ginger ale, and than he says "this" and goes to get a tiny 2 oz bottle of Purell, that I had in a pocket of a spare pair of pants for him, at the bottom of the bag with other stuff, that he had dumped out all pover the living room floor. He had purell down the front of jis jammie top, but fortunatly his breath didn't smell like purell, or around his face, he said he didn't drink it, so we figured he didn't drink it, wasn't in any distress from the possibility of drinking it, just kept an eye on him, no probs from him. Onto next new disgusting filthy habit, have to run past him while getting to have him use the toilet, he thinks he's the cat meow, wanting to put both hands on the side toilet and has tried to take a "header", like his own wade pool. Or , he may just prefer to sink almost up to elbow while doing a boy "tuck" while going in the toilet. He will than fight about wasing his whole amr with soap and water, and get clean the "normal" way, but would prefer to likc the dirty toilet wter off his arm and hand. I really thought I was going to gag when I saw him try to do that. If he does get mission accomlished, he'd be off to the ER.

Tom · Posted: May 05 2008, 4:40 PM Post subject:

The second one sounds familiar! Boys will be boys and anything they can do to drive their parents crazy! Wink

_________________
Tom

Dad to Beth ( 20 ) and Mikey (15 - Ds and PDD-NOS)
My Blog - Random Thinking
Find me on Facebook
Find me on Twitter as tgpaul

KatieB · Posted: May 29 2008, 10:33 PM Post subject:

Matty has his Psychiatrist appt tomorrow morning. Have all the paperwork in a folder, and wrote down things he has done and what we have noticed as well as all his Dr's and school.
Katie

KatieB · Posted: June 02 2008, 2:10 PM Post subject:

Matty had his appt with the psychiatrist last fri.We get in the room Matty makes a bee line for the computer and yells out "videos the Dr put on shrek and the wizard of oz videos on the computer for him. "scuse me, scuse me Dr, videos" "Matty, wait a minute, while I talk to your mom" "no talk" so the Dr caved and did the video thing, 2 mins later "scuse me, scuse me..." that went on almost the entire appt. He thought Matty was very impulsive, wanted all attention to himself. I told the Dr that I thought Matty was not behaving too badly, just a little demanding, and this is just the tip of the ice berg behaviorally. We were able to talk briefly before Matty would interupt about 3 mins. At the end of the appt, I handed over the folder of behavior documentation from almost 2 yrs ago to the present, about 20 pages of "fun" reading. See what the post appt note says in about 2 wks. Gave a script for clonidine, which we started saturday. Starting to see a few changes, positive ones, and since this drug is technically a med for blood pressure, but findings have shown it's now used for ADHD and Tourettes, as I got the call this morning from the school RN, regarding Mattys very low blood pressure, she said he seems to be fine, but very tired, a little unsteady. We both his BP, was extremely low, almost dangerously low, we laid him down, raised his feet, which he fought about, waited a few mins, took the pressure again, went up a tiny bit, than Matty said, he wanted to go to lunch. I think I was in the RN office for about 30 mins. Matty ended up staying at school. I caleed the cardiologist to read Mattys EKG done lat fri, any abnormalities he'd call back, no phone call from him as of yet. I spoke with the Pedi, no clonidine this afternoon or tomorrow due to the hypotension. Also paged the MD-Psychiatrist that we just saw 3 days ago, listned to me ramble, than he said, no more clonidine, take him off immediatly. He called in another script for another med and keep an eye out for side effects too. See how that pans out. The school RN will do BP's on Matty about every hour give or take, until he gets back to baseline. I really wish this med didn't have such lowering of Mattys BP, the Dr said "probably a little", biut not to the exteme where it was since we were starting to see some positive behavior, and not the crap he would pull, even after 5 doses. Next med, batter up!!
Katie

kittycat3376 · Posted: June 03 2008, 5:23 PM Post subject:

Sounds like the clonidine was working well, buummer about the side effects. Good luck on the next med. Have they told you what it's going to be yet?

_________________
http://www.carepages.com/carepages/DavidLucas

KatieB · Posted: June 05 2008, 2:17 PM Post subject:

The next med is Tenex, also a BP med, and hopefully this won't let his BP bottom out too. I bought a Pedi BP cuff, and will wait about 2-3 days longer for him being med free before we try this, check Mattys blood pressure, and if we feel his blood pressure is baseline lower, won't happen. We'll have another chat with the MD-Psychiatrist. Seems since Matty went off clonidine, he's been alot more physically agressive. We went to an art show at the kids chool last night, he had such a melt down about getting into the van, other than the no way I'm getting in that car seat fight, he was scratching, he said he was going to kick us in the head, and was really trying thanks to loose joints came close, pinching, spitting. He actually drew blood on my hand. At school, he threw himself on the floor, and at one point thought he was going to pound his head into the floor becasue of the position he was in, and than licked the school floor, at least he doesn't have stomach bug (yet, stay away), all becasue we wouldn't carry him, and than the same sh** about getting back into the car seat. This morning, same thing all because we told him it was time to get ready for school. I'm not afraid of him, but the larger and heavier he gets, the harder this will get until we find the right med/doseage for him.
Katie

kittycat3376 · Posted: June 05 2008, 2:24 PM Post subject:

Wow, sounds like you had a really rough night. I hope the docs can get this all resolved sooner rather than later.

_________________
http://www.carepages.com/carepages/DavidLucas

KatieB · Posted: June 05 2008, 3:09 PM Post subject:

Just got the psych appt note. Had the usual hstory, famly background, mentons the shrek-Wzard of oz vdeos he wanted on yahoo, how he was flappng whle watchng t, hyperactve, impulsive, won't take no for an answer. All of the notes brought didn't get mentioned, the bahvor he saw after the appt wasn't mentioned, Matty scratching me, and the Dr saw that too. Seems he wrote that Matty s a sweet, adorable boy wth no agressive behavior, great eye contact. Too me that note s a joke, but than agan, was the frst tme that he saw Matty and hasn't endured the wrath as some of hs other Dr's have. 'm gong to fire off an E mail to hm rght now about the way Matty has behaved snce we stopped clonidine mon afternoon, should get out the video cam and charge it up, forget Shrek videos next appt, watch this video!!! At least one thing was right: Mattys very carng and very dedicated mom was mentioned.
Katie

KatieB · Posted: June 05 2008, 3:48 PM Post subject:

Just sent the Dr and E mail about the physically agressive behavor we have endured for the past 2 days from the Dr's sweet, adorable, non agressive pt, great eye contact, and wants to meet everyone in sight pt.

KatieB · Posted: June 05 2008, 3:50 PM Post subject:

anyone feel the sarcasm?

KatieB · Posted: June 12 2008, 2:20 PM Post subject:

I heard back pretty quickly from the Psychiatrist-MD pretty quickly last week. he asked if we were ok because of his aggression. So, my husband an I deceided to try another med, Matty became very tired, and this one lowered his BP as well, from his baseline, he would fall asleep shortly after having his afternoon dose, would have to wake him up fo dinner, and than he sometimes would fall asleep at the table with food in his mouth, no way is he going to be a chocking hazard. The only thing that has changed is he hasn't been physically aggresive, still yelling, defiant, and crying alot. After I had a chat with the school RN yesterday, and she told me about his BP, he seems more pale than usual, sort of ike a waxy appearance, which i have noticed too, odd. Last night i left a voice mail for the Psych-MD, he called me back, asked me to page him right away, I wasn't home, paged him later, and now just a waiting game. I spoke with his Neuro-developmental, and she said we made the right chice not to give Matty tenex this morning, keep him off until I talk to the Psych. I Here we go again!
Katie