Starting the hunt for the magic bullet again!!!

Sickntired

New Member
Well, we thought we had found the magic bullet, and we had, but as always, luck was not on our side on this one.

My difficult child began taking Invega after trying multiple, multiple, multiple medications. This was a miracle from the beginning. We noticed the effect almost immediately. He turned back into the sweet young man I had not seen in many years. He started out on 3 mg and then went to 6, which as I understand it, is a "normal" dose (whatever normal means in this world - I of course would not know). He was doing WONDERFUL. His mood was smooth, smooth, smooth. We could actually have a conversation with him without an argument. Before, everything was an argument. Something as simple as take a bath, put on your seatbelt, was a fight. Granted, it did not CURE all of his problems. He still hates school, but his mood was, I fear to use the word, NORMAL. We liked him again. Then, bad luck reared its ugly head. He told me his breasts were sore and I kind of blew it off, thinking well, he's 14, probably just hormones kicking in. Then it kept getting more sore and more sore. Then he told me he could get "white stuff" out of his right breast. I nearly swallowed my tongue. I felt of his breasts and they had huge lumps under them. I called his doctor the next morning. He said the words I feared he would. You have to stop the medicine. It's a side effect, rare, but a side effect. It is making his body produced to much prolactin. He could develop breasts and worse, could be associated with likelihood of causing cancer. I thought I was going to puke. For the first time in several years, he had control. And now it was going to be taken away. I just wanted to melt into a puddle. He said we have to get the lumps down and I can't replace it with anything until that goes down. So now, we are living through a rerun of what we have been living for the last few years. He has returned to the angry, oppositional, irritable, cursing, everyone else's fault young man. And, of course, he got suspended from school. Caused to much distraction. He got three referrals. Mind you, I called them and told them we were having to stop his medicine, and the reasons why. That if they saw he was starting to be disruptive, to please call and I would come and get him and take him out until we could get him started back on something. But of course, they paid no more attention to me this time than they do each time I try to tell them something. Now, they have the brilliant idea that he needs to be "home bound". They will provide a teacher to come to our home for 1 hour three times a week, and he can just do his work here. LIke it's so simple. If they can't get him to work, do they really think I can. Yeah, right. Our appointment with the doctor isn't until next Monday. He said he may try him on Geodon. I've heard some pretty bad stories about it, so I'm kind of leary. I want to see if he will let him take only 3 mg of Invega, since we didn't notice the swelling on the lower dose, but my guess is he will not. So, we are back to step one. He was on Abilify for 2 years. Nothing, only got worse. I keep insisting that he is bipolar, but the doctor said no, he didn't think so. I don't really see mood swings, he just gets stuck in one nasty, irritable, angry mood and can't get out of it. He has a lot of what I call, risk taking behavior. BY that I mean he likes to do things that are dangerous. He likes to ride a dirt bike. Not just ride it, but Jump it over things. Just got him healed up from a bike wreck where he had a dislocated shoulder. He likes to skateboard. Not just skate, but jump and turn summersaults off ramps, with concrete below. He's knocked his front teeth out. That cost us 3,000 to have his mouth redone. His goal is when he can drive (I shudder at the thought) for his license plate to read - 2fast4u. Boy, that's a goal. They know us by name at the emergency room. They call him the BB boy. He's been shot in the elbow with a B-B gun(his FRIEND accidentally shot him). Had to have surgery to get the bb out cause it got infected. Then, another friend shot him in the side of the head. He had to have surgery to have that bb taken out (mind you, none of this is done at our house - always somewhere else). Guess I shoudl just lock him in his room for his own protection. One time this year, he got a pocket knife (which is a big no-no cause he's to forgetful and careless - he might leave it open and sit on it!!!!) He was playing like he was a Ninja and swinging it around and cut his butt open with the knife. We had to take him to the emergency room to have it sewed up. The list goes on and on and on.

Besides being glue to hold this family together, I now have to be a teacher. I need a raise. Benefits :censored2: too. And to top all of this off, I have a cold.

Ok, now I feel better. Just had to gripe. My dogs have gone to bed so I had no one to listen to me.
 

meowbunny

New Member
I'm so sorry about the side effects. Hope they find something that works.

I really have a deep and abiding loathing for schools and their lack of caring for ED kids. If a child is in a wheelchair, there is all kinds of assistance and sympathy. Heck, I've seen a kid in a chair deliberately ram an autistic boy and watched the teachers literally scream at the autistic boy while worrying over the boy in the wheelchair. The autistic boy was doing nothing, had his back to the other. It really irks me. I'm sure that someone from the education forum here might be able to help you at least a little.

I would flat out refuse to homeschool. I would send a registered letter explaining the medication issues and the school's reaction to the school superintendent. If he doesn't have an IEP, I would request that a full evaluation be done and request one. The way you are being treated is, in my opinion, outrageous.

I'm sorry, but I had to laugh at some of your son's mishaps, especially cutting his rear end. You sure he didn't just leave it open in his pocket and sit on it? The Ninja story makes for a good excuse.

HUGS
 

Sickntired

New Member
You have to laugh at all of this. To top off the Ninja story, my insurance company (we have 2 - mine and my husbands) called me. They had billed the emergency room visit, for whatever reason, to my son's pediatrician, not the emergency room, and they had billed it as being ME having the cut. She wanted to know what I was doing seeing a pediatrician. I said "Ma'am, I am sixty years old. I have better sense than to swing a knife around and cut my rear end open. It was my son". We both had a huge laugh at it.

He is our grandson. We adopted him when he was a baby. OUr daughtr, who is deceased, ran off and left him and his brother and sister with someone she had only known for a few days, which adds up to some of his problems. He was also abused as an infant. Really, horrible stuff. Guess I should be grateful that he's even able to function at all. He looks, acts and smells like a normal kid. But there is a war going on in his head that we cannot see and that is the hardest thing to fight. The unseen.

He does have an IEP. My opinion, they are just tired of messing with him. He is a very, very difficult child. I stay so angry with them but, that is their job, to educate him, not mine. HE can be taught, They jut have to figure out how. It's really ashame how these people can do these children. They expect him to behave like other kids, and it is not in his ability to do that. Instead of praising maybe one thing he does right in the day, they focus on all the bad. He has told me, I hate the way they treat me. I can do the same thing as another kid and I get in trouble. And, unfortunately, he's right. I don't think I am going to let them home bound him. LIke I said, I'm not a teacher, they are. Besides, that's the only relief I have are the brief moments he is at school, when we can keep him there!!! LOL.
 

SRL

Active Member
I'm so sorry to read about this turn of events. I know from posters here how hard it is to find the right medication(s) so it must incredibly disheartening.

You might want to check on the Special Education board about that lousy suggested homebound arrangement. It sounds more like independent study with the homebound handling paper delivery. There may be some other options--ie at one point the school offered a homebound instructor to meet my difficult child one on one at school or another district location when he was emotionally fragile
 

2kidsmom618

New Member
hi everyone, i am new and i have a quick question i have a 6 year old little girl that has been diagnosed with oppositional defiant disorder but she only acts up at home, the school says that she is a perfect student, she never gets warnings, she is very polite and very well behaved for them. is there other children out there that have this diagnosis also and only act up at home?
 

AllStressedOut

New Member
I had to laugh at his shannannigans too. Cutting his butt open with a knife while playing ninja. That sounds so much like my difficult children.

I would agree that you should figure out how to refuse this home education offer. I often say, I didn't go to college and get a degree to teach these children, you did, so you teach them and I'll parent them. It is very frustrating.

(((hugs)))
 

Sara PA

New Member
INVEGA is sort of an extended release version of a reformulation of Risperdal which is notorious (at least around my household) for causing manboobs. They may not go away on their own.

Homebound for higher grades doesn't work if the teacher is only coming 3 hours a week. It won't just be a matter of getting him to do the work, it will be a matter of teaching him. A homebound instructor won't have time to teach much of anything in one hour visits (especially if his travel time is included in the hour). They pretty much drop off new work and pick up old work. No time to teach. When my son was home bound he was taking geometry, chemistry, Latin, English, and social studies. Few parents can teach those subjects. I'm actually qualified to teach social studies but so was the homebound instructor they sent. Pretty much there was no instruction in the other four subjects and the teacher actually brought a movie for the social studies. I wasn't impressed.

We ended up unschooling which worked because my son is very bright, curious and had a lot of time on his hands. (His social- and agoro-phobias kept him home all the time.) Unschooling isn't really legal in PA where school districts are responsible to oversee curriculum of homeschools but my son was old enough to quit school which is what he did. On the other hand, the school probably would have done anything toget him out so they weren't about to object to whatever method I decided on if I decided to homeschool.
 

timer lady

Queen of Hearts
Just popping in to offer you my welcome ; you & your husband have certainly taken on a lot & your hands are full.

I'm not surprised at all the risk taking behaviors/choices exhibited by your difficult child. My children (both from abusive/traumatic situations in very early childhood) are extremely disconnected when it comes to what is safe & what is dangerous for them.

I hope we can help you along this journey. It's not for the faint of heart.
 
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