worried, irritated, angry

[ready2run]

difficult child started having trouble breathing last week accompanied by vomiting, and we took him to the doctor. they said something about his heart beats fast because he is little and so he has to breathe faster and don't worry about it. (yeah, okay....and this doctor specializes in both behaviour issues and cardiology.) so we waited a few days and hoped it would get better. so Friday we realized he's not getting any better on his own and take him to a different doctor at the walk in clinic. the doctor heard his heart and said "Holy Mackeral Buddy!!" and said that he has an arythmia along with an extra beat in there. he has to go for more testing now and they think he has heart damage caused by his medication. so we are now also weaning him off of that and let me tell you that is not fun for anyone.
i feel like a jerk for putting him on medication when this is what is happening now.... *stress* he is only getting half a dose now and he has been screaming and crying and whyning for 2 days now. obviously i don't want him to be sick. his heart is still acting all crazy. i don't know what i'm going to do if he has to be unmedicated. when we decided to put him on the medications last year we were at the end of our rope, and we were about to surrender him to CAS and medication was our last chance to keep him as part of the family. i'm not sure what else to say. i feel really horrible. i don't know how i'll live with myself if his heart and breathing doesn't get back to normal.

 

[pepperidge]

I'm so sorry, What medication was he on?

Please don't beat yourself up--you did all you could to help him have a normal life. IF he had had a life threatening illness and you gave him a medicine that caused side effects you would also have been doing the best you could.

Sometimes there are medications in a whole different class that can help--medications for ADHD for example, different Anti pyschotics that help with rage and agression.
so don't rule out medications altogether. Just get a really knowledgeable doctor--I sympthathize, having a child with Fetal Alcohol Syndrome (FAS) also.

let us know how things go.

HUGS.

 

[Shari]

Hugs!
What medication did he take?
I struggled with using medications for my difficult child, too. One day my sister in law said 'what kind of life does he have now? Without the medications?' fact is, he didn't. He was close to having to be placed elsewhere, also. medications gave him a shot...
Please don't beat yourself up over it. You're doing the best you can.

 

[ready2run]

thanks for understanding. he is on both risperidone and ritalin. the ritalin was just for school so he could pay attention. the risperidone was for his agression and the screaming. hopefully it won't take long before he gets something working and his little body heals. the doctor said it is probably the risperidone that is causing the problem so that is what we are weaning him from.

 

[Malika]

It's easy to say "stop blaming yourself", and of course it is understandable that you do, but really others bear far more responsibility than you do, in my opinion. Starting with doctors... I do not know anything about these medications but it does seem to me, from the outside and not knowing the position in any detail, that doctors are far too quick to prescibe serious medications without sufficient knowledge or exploration first. And they do it because others are doing it, because it's a cultural trend... There is a lot of pressure, it seems to me, to put children on medications and OF COURSE you would do that, thinking to help your son. It also does help a lot of people, and there are people here on the forum who say that it has given their children a chance of school life and social life. So each case is different and each case has to be looked at individually.
I am someone who is very worried about the side effects of these medications and plans not to put my son on them if that can be avoided. But then at the moment his behaviour is not SO difficult, either at school or home, that not putting him on medications becomes a serious dilemma... for the moment. I do not know what other options exist for your son and how bad things get with him. I know Fetal Alcohol Syndrome (FAS) can have serious effects. So the question is simply not an easy one. There are people who believe there are always alternatives to medications - but they may not have to deal with the day to day reality of living with a seriously unmanageable child. I would like to believe there are usually, if not always, other solutions but I condemn no-one for the choices they make. What I would condemn is making choices without exploring and reflecting first. I am sure you do this and have done this - you sound a very caring and loving parent.
What is your next step?

 

[ready2run]

well tomorrow we (his dad probably) will be taking him in to get some x-rays done. then depending on that more testing to see if this is going to stop on it's own or if we need to intervene somehow. i'm not really sure what's going to happen next. we had the school take him out of gym class and had his EA teaching him marbles at recess to keep him from getting too excited. we don't have a proper family doctor for him, just alot of psychiatric people and a pediatrician that specializes in behaviour problems so i'm not sure who is even supposed to follow up with him but i spoke to his psychiatrist today and they said they will make sure he ends up at the best doctor to deal with it once they find out if there is any actual physical damage to his heart. they also said to take him off all his medication immediately so the next few days should be pretty rough on him.

we tried to treat him without medication. i tried all kinds of things, changing his diet, behaviour modification, being consistent, reward systems, ect. at the point when he was hurting himself and others on a daily basis and he was crying for most of the day and destroying everything from toys, to windows, his bed, pulling the floors apart, we decided we had to medicate him. he even tried to smother my youngest son to death and he was only 15 months old at the time when difficult child got his hands on him. the only options left were medication and foster care....... i hope it does not come back down to that again. he did fairly well today other than talking non-stop and one aggressive incident towards his brother.

it is also very hard for me because his dad can not tolerate him very well and tends to make things so much worse than they need to be. for example, today difficult child demanded to his brother that he hand over whatever thing he had or else. now, i would have said 'no, that's not nice and that's not how we get what we want.' then he probably would have cried and got increasingly angry and i'd have to ask him to leave the room. dad has other ideas. he thinks if he gets really strict he can get the 'bad' out of the kid. so he hears this and grabs him by the arm, takes him up to his room and starts yelling at him about how he'd better not talk to people like that and telling him how rude he is bossing people around. difficult child goes into immediate meltdown mode and proceeds to smash up his room and slam things around yelling he hates us and he wants to leave and go live with ms.revard(his ea) so i once again tell husband that what difficult child did wasn't that bad and there was no reason for him to act like that and he needs to remember that difficult child is disabled and can't control himself because he seems to forget that and expects him to be a easy child all the time..... i think if i didn't have to deal with husband i could handle difficult child alot better but, hey, it's his kid so he must know best, or so i'm told. difficult child is step-child by the way, the others are mine just to clear that up.

 

[ready2run]

had a horrible horrible day today. he is having wicked mood swings. i am at a total loss. one second he hates me and wants to cut my head right off, then he is sorry loves his momma then hates me again and is smashing the door, ect........ he did co-operate with his tests this morning. they said the results should be back in about a week or less. hope we get this resolved quickly. he gets himself so wound up then he starts crying because he doesn't feel good and needs to lay down but he won't stay laying down and is getting scared because he now knows what is wrong and can feel when it is happening.... on one hand i feel bad for him having to go through all of this and then on the other hand i'd love to just strangle the little booger(not really but you know what i mean) to get a moment of quiet around here. on the plus side his CAS(like family services) file is now officially closed now that 'proper services' are in place, although they seem to so far be entirely useless.

 

[TiredSoul]

How scary. I am very sorry for what you are going thru. My first thought was I hope they pull the ritalin -because doesn't that have a warning for anyone with heart problems not to take it? Second, I wonder if there is anything he can safely take for anxiety. Sounds like he is getting worked up because like you said he is aware of what his heart is doing and so it might be freaking him out. Hang in there.

 

[AnnieO]

There are so many contradictory studies. One says methylphenidate hydrochloride (Ritalin, Concerta) can cause heart problems, another says no.

Fact of the matter is, all drugs have some side effect or other. It is a case of what's the lesser evil... Sigh.

And FWIW? I'm not a big fan of ANY medication - but if it is needed, TAKE IT! (Or give it, whichever...)

Hugs... And strength to get through the next few days...

 

[jennd23]

I hope they are able to get his heart figured out quickly!

As for the medications, try not to blame yourself, I know that's so hard but you were only doing what you thought was best at the time. Now you know and you are doing what is best now. That's the problem with life, we can't see the future and we can't change the past. You are doing what you can now and that's all you can do. Going over the could've, should've, would'ves won't help anything.