Monday, October 10, 2011
sigh
Hes raging again, hitting me...very hard this morning to the point I had to restrain him because even after trying to just leave him and let him "work it out" he pursued me...Im so disheartened, its been coming for a while now, the Invega dose nothing for him, his anxiety and moods are all over the place...im sacred to leave him in the same room as his younger brother alone again...i might take him off of everything except the clonidine for a month or so and see where that leaves his baseline...his doctor wants him on Lithium and I just wont have it, first of all i have enough trouble getting a flu shot for him let alone blood draws to check his levels...and i just dont want it...I would rather have him be acting out on no meds then acting out on meds...this whole thing isnt fair but if we cant find a med that works whats the point of having him on meds that... f doesnt fustrated even begin to state how i feel.
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8 comments:
Lithium can really be a wonder drug for some kids. My daughter did a complete 180 on it. And the blood draws the dr can prescribe something to calm down him down first and relax him.
good luck
Kay
My experience is the same as Kays, but I know too well how frustrated you must be. It is difficult enough to try meds, but to not see an improvement is awful. Trust your gut.
Im terrified.
mama Bear I read the link you have up, those people were awful to you...but they brought all my deepest fears to life, I have no idea what or who this website and doctor is they are all talking about, but how do I know, how do I know I wont turn my child into a vegetable. He today was in serious trouble at school, the filter he was once able to carry on his mouth in school has vanished, he has been off the invega since thursday his thoughts are racing even faster, his mood is just off, crying one min, anger, maybe rage the next, I am looking into a homeopathic doctor, while he is still on his clonidine and valium ( we tried without it and he was up til 4am) its the "harsher" chemicals I am scared of, I should probably mention that I am bipolar (recently dx changed from 2 to 1) and it is highly suspected his father was as well he clearly was ill as he suicided a year and a half ago, and no zack doesnt know. anyway my greatest fear that my son will die by his own hands due to mental illness, as his father succeded and I have made attempts....what do I do??? his PDOC really thinks Lithium will work but any drug where your levels need to be checked scares the crap out of me...my gut isnt telling me much except to keep asking more questions I have til the 28th to see where things lead, then we see the dr again, maybe he will just wake up well..my gut tells me thats just not going to happen
sigh
Zacks mom
Zena,
I know you’re scared, we all are. Sometimes I feel like its a game of russian roulette, I never know what "click" will cause the damage, at times it feels like it all leads to bad stuff. But we ask the questions, taking it one step at a time.
Lithium has transformed my son, he has been stable for 3.5 months! This is the longest we've ever gone. He has had only 1 rage in this time period, he has play dates all the time now, he joined an after school program for fun, he is helpful, loving, funny and very engaged, he even responds to discipline. As for blood work, he walks in with ELMA cream on his arm wearing his headphones. We went through a period to work up to this, let me know if you want the details, but he was once a kid that almost jumped out of a car after beating his dad up on the way to a blood test to a kid walked in on his own, even laughed with me during his last blood draw.
For us, this may be a dream that disappears if his kidney condition (something he was born with) becomes too taxed by the Lithium, a possibility with long term use.
I can't imagine his life without Lithium, but that is my experience. Others didn't have the same experience. I wish i could help you, I can only share what I've seen in my son and honestly, I wish this was something he could take for a lifetime if needed.
But with his kidneys, we may not be able to.
I thought I would share with you what my son said tonight. We were discussing his upcoming appointment for his kidney check and our ongoing discussion about whether or not we can keep him on his Lithium and for how long, when he responded with, “There’s no way I’m stopping my Lithium, EVER! You’re going to have to fight me to make me stop!”
This is how much Lithium has helped my son. He has never said that about his medication.
Thank you Mama Bear!!
Im going to do some more research, and see what his baseline returns to without the meds, so far its not looking all that promising, although just moments ago he after reminded that he had a field trip today said "Im going to do everything I can do be good on this field trip, I need to tell Miss xx I am sorry" he wants it, to feel better, to not be so anxious he vomits, to not rage for no reason so hard he hurts us, hes fustrated and asks the doctor to find a medicine that works but after his experiance with Risperdol, he refuses to go on another med with a weight gain side effect, he is proactive even being only 7 and asks questions about the meds (not sure if this is good or bad) hes very smart and knows something is not right, we also see a therapist another dr, who works on other methods to control his moods and behaviors, he enjoys learning knew methods to calm himself it makes him feel more in control but when his mind races and the anger turns into rage, he is out of control and knows it, I worry about him without the meds as last winter we went through the suicidal thoughts where he wanted to through himself out a window...that I wouldnt be able to go through again.
Thanks for everything, it is definately something to consider I guess I just need to research and do some pros and cons
Love, Zacks mom
You’re doing the right thing, keep asking questions and doing the research. I try and keep in mind some advice I got from Dr. Singh from Stanford... “When it comes to medications, there has to be a risk-benefit evaluation: Live with the symptoms or live with the side effects. What’s worse?”
That is a question only you and your son can answer.
I am so sorry! I know the extreme frustration at not being able to get stabilization from all the "miracle drugs" being pushed on us and our kids. We have yet to achieve stabilization and my child was diagnosed six years ago. Since then we have been on every single medication on the market that is a mood stabilizer, anti psychotic, off label med that "may" do the trick, anti depressants (BAD IDEA) and benzo's and combinations of the above. It gets SO OLD! It's hard on us dealing with the side effects such as agitation, aggression etc, but then the child often times has to be hospitalized to protect them while getting the side effects out of their systems and we're back at square one to try a new med and hope (agaaaaain) that this is the one....sigh....
My child was just put on Lithium a couple weeks ago and it didn't work for us. It made her very irritable and aggressive. She got violent with me and ran off, and her O.D.D was rearing its' ugly head. I had so much hope that this time it would work because I have heard some remarkable things.
Sending you good vibes and wishing you balance.:)
~Melissa
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