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bluekrissyspikes
05-19-2011, 02:41 AM
my step-son has recently added heart problems to his seemingly never ending list of issues.... first we brought him to his doc who made it seem like no biggy, didn't order any tests or anything just said his heart is beating fast. after about a week of not feeling any better we took him to the walk in clinic and the doctor there ordered some tests and gave us more specific information(he has an extra beat in there and and arrythmia as well as going much faster than it should be), and told us that it is probably the result of medication he's been taking for the last year for mental health issues, risperidone. so he said to wean him off and wait and see what we find out from the tests. we were also told to take him off his ritalin. so done and done. the kid is going through withdrawls right now and having a rough time. he is not showing any signs of improvement with his heart that i can tell. today is other doctor says NOT to take him off the medication and that is not what is causing the problem and i'm thinking, how does he know? how can he tell over the phone? one doctor is obviously wrong. so if it was your kid which doctor would you listen to? i have pretty much made up my mind for now, i am just looking for other peoples opinions to sort of verify if my choice is the right thing to do or not. and yes, we had good reason to start him on the medications and they were helping and when all is said and done he is likely to be medicated again in the future.
i'm also wondering if anyone else has gone through this and if it resolved itself after going off the medications. after reading up on online i can't find anything to help me figure out what's going to happen.

HDV
05-19-2011, 10:37 AM
Is Ritalin not pretty much speed?.. that is enough to make anyones heart race. But on a serious note, my cousin's daughter was on Ritalin between the ages of 9-12. They were the blue ones, I know this because i had her for a week and had to give her meds to her. I remember my cousin saying something about how it would make her heart race. She took her off of it and she was back to normal. (her heart) It was making her tired, zombie like. I personally and this is just my opinion, do not believe in medicating little kids with medications like Ritalin. Its makes the recipient all zombie like, duh like..you know. But i guess some kids really do need it. i would personally go with what the doctor said about weening him off. Dont stop the Ritalin all together that can cause serious withdraws but ween him off slowly.

MagicFingers
05-19-2011, 11:04 AM
I don't agree with HDV it doesn't always make the child zombie like, it depends on dose and the child and the type of medication. But on the original statement I would listen to the doc that said to ween him off. If it is the medication causing this it can cause major problems and if it isn't the medication you can always restart it, I know in the mean time the behaviours can be difficult but you will manage but that is how I look at it. I truley hope you get this figured out. Hopefully they run a lot more tests and figure out what is going on.

bluekrissyspikes
05-19-2011, 01:01 PM
Is Ritalin not pretty much speed?.. that is enough to make anyones heart race. But on a serious note, my cousin's daughter was on Ritalin between the ages of 9-12. They were the blue ones, I know this because i had her for a week and had to give her meds to her. I remember my cousin saying something about how it would make her heart race. She took her off of it and she was back to normal. (her heart) It was making her tired, zombie like. I personally and this is just my opinion, do not believe in medicating little kids with medications like Ritalin. Its makes the recipient all zombie like, duh like..you know. But i guess some kids really do need it. i would personally go with what the doctor said about weening him off. Dont stop the Ritalin all together that can cause serious withdraws but ween him off slowly.

my little guy was not zombied out at all. in fact he was still crazy hyper. he was on just enough to help him sit down in class for short periods between activities they give him because of his excess energy. it also helped him to stop attacking his 'friends'. some people over do the medication because the doctors give them extra to make it easier. i am not one of those people. i'm glad your cousin stopped over dosing her child and i hope that my kids heart goes back to normal soon like that one's did. i also have a cousin who was put on an over-dose of ritalin but that is how they used to do it, start them off on a high dose and lower it until the person can somewhat function. now they start them on a minute amount and increase slowly until you get the results you want, which for us was just enough to get him able to participate in class somewhat.


I don't agree with HDV it doesn't always make the child zombie like, it depends on dose and the child and the type of medication. But on the original statement I would listen to the doc that said to ween him off. If it is the medication causing this it can cause major problems and if it isn't the medication you can always restart it, I know in the mean time the behaviours can be difficult but you will manage but that is how I look at it. I truley hope you get this figured out. Hopefully they run a lot more tests and figure out what is going on.

yes, we will manage the behaviours. it takes some time to get the meds out of his system so it will take a couple weeks before he gets to his pre-medication state. so far so good, i suppose. thanks for your reply.

MaO3
05-19-2011, 02:32 PM
Did they actually give you a name for the issues with his heart? I'm asking because I have a condition called Premature Ventricular Contraction. It causes my heart to beat at the wrong times and then it must catch up. They no idea what caused it as I"ve never been on any kind of medication prior to diagnosis except for two courses of anti-biotics in the years before.
My "condition" as its called is considered benign. In other words it wont' hurt me, or harm me or kill me - at least not at this point in my life. They did tell me that somewhere down the road probably not before I hit 60 or so - I'll need a pacemaker to keep my heart beat semi regular, otherwise I just live with it.

So perhaps its not something terribly terribly serious?
As for the two different doc's and two different opinions - Ask to see a Cardiologist - and get an EXPERT opinion.
Just Mine though - opinion I mean.

Luv'inLife
05-19-2011, 06:18 PM
kids on drugs...yay

bluekrissyspikes
05-19-2011, 08:57 PM
Did they actually give you a name for the issues with his heart? I'm asking because I have a condition called Premature Ventricular Contraction. It causes my heart to beat at the wrong times and then it must catch up. They no idea what caused it as I"ve never been on any kind of medication prior to diagnosis except for two courses of anti-biotics in the years before.
My "condition" as its called is considered Begnine. In other words it wont' hurt me, or harm me or kill me - at least not at this point in my life. They did tell me that somewhere down the road probably not before I hit 60 or so - I'll need a pacemaker to keep my heart beat semi regular, otherwise I just live with it.

So perhaps its not something terribly terribly serious?
As for the two different doc's and two different opinions - Ask to see a Cardiologist - and get an EXPERT opinion.
Just Mine though - opinion I mean.

thanks for the info. i am hoping it is not serious. they haven't said anything yet as to what it might be or if it's serious or not because they are waiting for the test results.

bluekrissyspikes
05-19-2011, 09:02 PM
kids on drugs...yay

if you had to look after him you'd understand why. i know alot of kids are medicated for being hyper which don't really need it. others are completely off-balanced and have real mental health issues that need to be dealt with. beleive me, i was against medicating kids before and sat there judging the parents like you are doing to me right now. it's hard to imagine if you haven't been through it. so please keep your comments to yourself. i already feel bad that he is sick now.

Luv'inLife
05-19-2011, 10:03 PM
if you had to look after him you'd understand why. i know alot of kids are medicated for being hyper which don't really need it. others are completely off-balanced and have real mental health issues that need to be dealt with. beleive me, i was against medicating kids before and sat there judging the parents like you are doing to me right now. it's hard to imagine if you haven't been through it. so please keep your comments to yourself. i already feel bad that he is sick now.

I have been there, I happen to have 2 children that were "identified" and it was recommended that they be put on drugs...I chose to teach them to deal with there issues instead of drugging them...I do hope he is o.k. and the effect is not long term.

bluekrissyspikes
05-19-2011, 10:55 PM
some kids are more difficult than others. this child in particular was not just misbehaving. he was making himself absolutely miserable and pretty much anyone else around him unhappy too. he has horrible violent tendancies and was injuring himself to the point of needing to be taken to the hospital. he also tried to kill my youngest son. on top of that there was no teaching him anything because he was in constant meltdown mode and pretty much if he was awake, he was screaming. it's not that he was 'identified' he is not well. again, you don't understand the severity of the problems we have gone through with him. i have two other kids that are aspies(12 and 4) that don't need medication even though it has been suggested and the school has asked us to medicate them. the meds i gave him were our last ditch attempt to not have him put into a grouphome. he was also not allowed to go to school because he was too dangerous to the other kids and himself. he was smashing windows with his head and basically destroying everything he touched to the point where our family members could not even handle him long enough to come by for a quick visit. as i said before, there is a difference between a kid who actually needs medication because of mental health reasons and just putting a kid on meds to make them listen. it's okay that you don't understand, even if you think you do. i wouldn't expect anyone to understand that hasn't had a child like this. most people don't realize it can get this bad.

Luv'inLife
05-20-2011, 04:16 AM
I have a brother exactly like him...so I do understand, my Mom took him to a specialist in Toronto [1974] and had him properly diagnosed, and treated...and yes some kids do need meds but personally unless its someone outside of this backwards town that recommends it, I would not do it...like I said before I sure hope the damage is not longterm [and good luck to him and you in the future]

Dragonfly
05-20-2011, 09:39 AM
Drugs do have a myriad of potential issues, stunted growth, heart problems, zombification (yes I realize that is not a medical term lol) and many others. Unfortunately, especially where there is dual diagnosis, which there is in the case drugs are sometimes the only option. I know this sounds stupid but I would take him to yet another doctor and see what they say because they may agree with one doctor or the other and then giving you a best 2 out of 3 kind of scenario.

bluekrissyspikes
05-20-2011, 01:37 PM
that's a good idea, Dragonfly. he actually hasn't had the zombied out or growth problems like most kids get. he grew quite alot since he started his meds because he was actually sleeping at night instead of rocking all night and more of his dinner was getting to his mouth where before alot of it ended up being thrown or dumped out or just plain refusing it because it wasn't cake or whatever.
not sure how long he can continue school without his meds. he had to leave yesterday after threatening to cut his EA's head off and wasn't allowed in class because of his disruptiveness. if we don't hear back from them on monday we will take him in for another opinion.

Dragonfly
05-20-2011, 02:06 PM
Ya, I would. It would be detrimental to him in many ways, socially, emotionally, educationally etc. if he doesn't get himself regulated again but then again if the pills are causing the heart problems the poor kids overall health is at risk :( You are between a rock and hard place. I feel for both of you.

Bill Nash
05-20-2011, 03:07 PM
In 1998, my 15 year old son was complaining of always being tired. We took him to our doctor who happened to be out of town, so a replacement doctor was available. This doctor detected a heart mummer which had been missed by several other doctors over a period of several years. After further testing, it was discovered my son had an enlarged heart due to two leaks in the chambers and a faulty valve from a birth defect. Doctors said had it not been detected (by a substitute doctor), he would be dead by age 25. At 16 years of age, he had open heart surgery at Toronto's Sick Kids Hospital. It was a trying time, but he came out of it with flying colors and is now 29 years old enjoying a prosperous life.

I would suggest you have your kid see a specialist for peace of mind. That is why we pay the big taxes. Dr. Mathur at the GHC is who looked after us, .... great doctor!

bluekrissyspikes
05-20-2011, 08:59 PM
wow. that was pretty lucky. and thanks for the doc's name. i will see if i can get in with him.

tippikitty
05-26-2011, 01:38 PM
Just putting it out there......
Ritalin is not just used for ADD ADHD etc. or just for kids. As for making children "zombies" is also not correct. As HDV said... It's pretty much speed.
I take Ritalin every day...3 times a day as a matter of fact. I take it for CFS (chronic fatigue syndrome) which is a result from the type of Leukemia I have. If I didn't take it, I would sleep all day and night because my body is constantly fighting off infection. So I am always tired. It is also used for people that have narcolepsy.

Jackie B
05-28-2011, 03:13 PM
Silly question, but have you look at using nutrition therapy? I have two very "energetic" boys, and I find when we stick to eating things that just grow out of the ground, they are tolerable. When we eat all kinds of wheat products, processed foods, canned soups and other foods containing MSG, and items with food colouring, preservatives, sweeteners or too much sugar, they are just little wildebeasts. Some kids are way sensitive to food additives. We eat just what grows out of the ground Monday through Friday, and there is a marked diference in behavior, tolerance and attention span on the weekends when we eat what we want. :O Plus, we all feel like crap on the weekends, but someohw the pizza and baking still wins out most times.

bluekrissyspikes
05-30-2011, 12:28 AM
we have tried eliminating things from his diet but not all at once. he will try almost anything but he has texture issues with alot of veggies and won't eat meat so what we did was eliminate say, food colouring for a while and no improvement so we tried white bread/rice/stuff like that. that was before we tried him on medication. so far he is still having a hard time being unmedicated.

last night he did not sleep at all and my 12yo decided to babysit him all night so he wouldn't get in trouble. they were unbeleivably quiet but that's besides the point. she also has aspergers so she seems to be more understanding of his disabilities and he reacts better for her...... we got the payback today though for him staying up all night. he seems to do alot better at home than at school or with grandparents. i guess we are just used to it, i know he is being difficult but i am getting to be numb to it at the moment because it is just something that is a part of our daily life. other people don't cope so well with it and so he is having a really hard time at school right now. still haven't heard from anyone or been able to get a hold of anyone about his test results. the lab says they sent them out early last week but somehow noone else seems to have them..... hopefully tomorrow.

if he does have to stay off his medication we are moving to a place where he will likely be attending a special ed school where they have therapists and things on hand and will be able to try out different techniques with him and hopefully find something he that is calming for him.

in the mean time i have ordered him two shirts...... one says "i'm not naughty, i'm autistic so please be patient with me" and the other one says "if you keep staring at us you might just cure my autism" on both the front and back. hopefully these will help curb some of the problems we have with people glaring in public or commenting on my parenting skills/critisizing how i handle things when they don't know why i'm doing it that way. this doesn't really help him but it will help how people react to him/us and hopefully make it easier on me and dad.

Dragonfly
05-30-2011, 09:25 AM
in the mean time i have ordered him two shirts...... one says "i'm not naughty, i'm autistic so please be patient with me" and the other one says "if you keep staring at us you might just cure my autism" on both the front and back. hopefully these will help curb some of the problems we have with people glaring in public or commenting on my parenting skills/critisizing how i handle things when they don't know why i'm doing it that way. this doesn't really help him but it will help how people react to him/us and hopefully make it easier on me and dad.

That is fantastic! I worked in a special needs class for a while and it is amazing how many people are completely intolerant of disabilities. Even when the children were quite obviously disabled in some capacity people just could not tolerate "misbehaviour" even though the children were not doing it on purpose. I wish we could have had some of those shirts!

bluekrissyspikes
06-01-2011, 10:58 PM
well, i knew it was coming and today was the day. he is no longer allowed to attend regular school because it's dangerous and the schoolboard does not want his teachers to 'physically manage' him(ie block him from running away or stop him from hitting people) so no more school for him. he is also apparently too smart for special ed too so he can't go there either(this also makes me wonder if the lady deciding this even looked at his report card cause he failed almost everything)....*stress* it sounded like they were suggesting we 'medically intervene' by putting him on placement ie. put him in the psych ward which is not going to help nor is it what he needs..........

Dragonfly
06-02-2011, 09:24 AM
Psych ward? Is that what we are doing now? This isnt the 19 friggin 30s. My god. What about behaviour classes? Home schooling? Something needs to happen.

MaO3
06-02-2011, 10:45 AM
Oh my goodness blue. You sure have your hands full right now don't ya. Has he been seen by a cardiologist yet? What are the doc's saying about the heart issues?
I simply can't imagine what your going through with all of this. I just wanted you to know I was thinkin about you and your little man and hope that you can get some answers for him soon...

bluekrissyspikes
06-02-2011, 02:50 PM
well we got to see the doctors today. we were there from 8:30 and we just got home. they said he has no apparent damage to his heart and his heart is back to beating normally, but he is still breathing funny which needs to be looked into. so thankfully that is not being caused by his heart like they said last time. we are supposed to try putting him back on his medication for the weekend and then take him in monday to get checked out again.
and yes, psych ward because if he was bigger he'd be unmanageable. psych ward is the fasted way to get his medications figured out and get him to see all the right doctors and probably get a referal for the neuropsych at sick kids. while that would be helpful i don't see him going co-operatively so it would be pretty traumatic and cause more issues in the long run. he has been attacking people and threatening them and he keeps panicing for no real reason but hopefully we will get that back under control if he is able to stay on his meds. he has also been escaping(not from me but at school) it has been very stressful and hopefully his heart does not start acting up when he goes back on the meds because they were making things alot easier for everyone. he is also staying off his ritalin now because of potential complications, which is fine by me. i didn't want him on that anyways, just did it for school.

blueeyedgirl
06-03-2011, 10:11 PM
What school system is you son in?

bluekrissyspikes
06-04-2011, 10:49 AM
public school.

blueeyedgirl
06-04-2011, 10:55 AM
Is there any way that you can try him in the cathelic school system? My son is in public as well and if it wasn't for his school being so supportive with the pressures i have always been getting from the school board i would have moved him to catholic. The lady that manages the ieps from the school board is the one that always gives me a hard time. Hopefully you guys get the medical and school issues figured out. Poor little guy must be so agitated and confused by all the changes that are happening.

bluekrissyspikes
06-04-2011, 12:55 PM
she is the one i'm having difficulty with too. she is also the one that suggested that he'd need to be put on placement and said he couldn't come to school anymore even though the teacher, ea, vice-principle and principle said they were okay with him being there and they'd manage him however it was necessary. i swear that she doesn't like special needs kids and she tried to tell me that autism wasn't a developmental issue so that goes to show that she is clearly uneducated on the topic. i'm not sure that i could do cathlic schooling for him because it would go against our religious beleifs. we are probably moving(well we bought a house but are waiting on legal stuff so it could fall through i guess) and once we do we will have a different lady to deal with although we will still be in the same schoolboard so his IEP will stay in place.

blueeyedgirl
06-05-2011, 09:41 AM
I have thought of pulling my son out of the public system but i just deal with the yearly stressful IEP meetings by trying to avoid them. I just hate feeling pressured into trying to conform to her thoughts which seem to be that the children with disabilities need to be segregated. Hopefully you have better luck in your new area that you are moving to.

bluekrissyspikes
06-05-2011, 05:08 PM
do you just have to see her @ iep meetings? we seem to have alot of meetings with them and sometimes she's there, sometimes she's not.

blueeyedgirl
06-05-2011, 07:07 PM
Yes we just end up seeing her at the end of the year IEP's. I just send the letter back that I can't attend and hope and pray that they don't call and try to set something up. Last couple of years they end up calling and rebooking so that i am there. This year the meeting is set for tomorrow if i remember correctly so we will see if i get that call lol.

bluekrissyspikes
06-06-2011, 03:39 PM
it's not the iep meetings that bother me. it's the ones that are called to 'discuss his behaviour' that i dread.. they never seem to end well and they are stressful. the teacher is great and everything but it seems like the spec ed lady doesn't grasp what autism is. she askes me about the same behaviours like it's me causing it and the answer is ITS HIS AUTISM...i can't punish him into being normal.

MagicFingers
06-06-2011, 08:07 PM
As you know autism is a spectrum with varying degrees. Sounds like your son is on the higher end of the scale in which people don't want to accept that he is autistic and figure he should be able to function like most other kids. I would if you haven't already highly recommend you to read the books by donna williams "nobody nowhere", "somebody somewhere" and "like color to the blind" I hae not yet read her fourth book but she is autistic and she writes from the perspective of someone being autistic how it was for her growing up and all the struggles she has had to deal with from family, friends, school and such. Perhaps you can invite some of the professionals in his life to read these books and learn a thing or two as well. Her is a link to her website and hopefully you get the support and answers you need. Hopefully going back on his medications will help stabilize him without causing the heart issues again.

http://www.donnawilliams.net/author.0.html

bluekrissyspikes
06-06-2011, 11:44 PM
to be honest i don't read all that much, i don't have time, but i may give them a look over. I'm not sure i'd say he's high functioning because that really implies that he'd be able to do his schoolwork at an age appropriate level and everything which he can't. he is outwardly 'normal' looking though and he is verbal so that affects how people see him. he does rock alot and do other stims but he doesn't flap his hands very much anymore and the rocking is only noticable when he's sitting so most people don't see it. he has an 'odd' way of speaking but not to the point that most people would think it was weird, just quirky. most of his problems are sensory issues and behaviour things. so yes, they do expect more from him and they expect him to be able to control it more because he seems okay when you just meet him for ten or fifteen minutes. those of us who have spent time with him understand more of what is going on.

MagicFingers
06-07-2011, 09:33 AM
I say high functioning because where I used to work in Ottawa, "Ottawa Valley Autistic Homes", the individuals were all very low functioning, IE diapers, hand over hand activities, highly behavioral where we had a padded room. Sadly some of the professionals we have working with our children have very little clue as to the extent of someone's disability and can not go below the surface. The books are very much worth the read and she is able to put into words what it is like to live with autism, why she does some of the things she does and some of the techniques she has discovered that reduces some of her anxieties. I will always remember what she wrote, for her when she is looking at someone or something she does not see it as a whole like we do, she sees things much like a jigsaw puzzle maybe an eye, and a nose then a mouth and she has to process it and put it in what she thinks is the way it is supposed to look, to make up an entire face. She also describes the rocking as a way to get from her world to ours. She describes it as being stuck and the rocking motion is like trying to make that leap from where she is to where she needs or is supposed to be. She also talks about diet and how she discovered what her trigger foods were and when she eliminated them her anxieties and such dissipated. The other was that the old saying "through rose tinted glasses" she found that when she wore tinted glasses that the jigsaw was then put together and she was able to see things more clearly and as a whole rather than in pieces. Hope some of this helps, it really was very interesting.