New Doctor

Gahhhhhh


Zacks new Dr.dosent get him, he gave me this bed time regime that I  am suppossed to follow, I already do most of it except let him scream it out. Its torture. He is now on visterol and clonidine, lowered dose of clonidine and 25 mg of visterol. I am letting him sleep with his sister which he still isnt pleased with. He wants me, to sleep with me. There he feels safe. I dont know what to do, i told him last night that he must try to sleep in his bed tonight, but he cries and screams and melts down...he has school in the morning he needs to get sleep. He got in trouble the first day of school. The teacher laid down the law and since then he has been fairly well in school here are the teachers words when I told her he was really struggeling at home..."maybe he is useing all he has to be "good" and in control in school and so he falls apart when he gets home"..sigh I have been saying this for years. The Dr. Thinks we have no structure I dont know how much more we can have....get off bus, snack, homework, playtime, dinner, TV time, Bath, bed, same thing everyday, what am i doing wrong, It seems like structure to me, maybe I dont know what structure is, In between that we have our meltdowns from something simple as not getting soda to "me hating him because he has to sleep without me", he hits his brother in fits of anger for no seemingly obvious reason, he calls A names, hurtful names when he feels threatened. He must be the smartest and the best at everything and if he thinks that hes not he puts everyone around him down, he can be very cruel. I love him and want to help him, he can be the sweetest most loving boy there is and he is always sorry, he is like 2 different people, This Dr wants to try Intuive or something like that, but not til he sleeps in his own bed, what is up with those requirements, I feel so defeated.

Zacks Mom

What do you do when your child cant sleep?

Its nothing knew that Zack doesn't sleep well,he takes clonidine, .4mg, it was .5mg but the new pdoc we are seeing wants it lowered, he is very worried about a drop in his blood pressure. He wants to bring it down to .2mg my child will never sleep, hes already waking up numerous times a night crying and with school having started he is exhausted in the morning, crying when he gets woken for school. This new Dr. wants him sleeping in his own bed ( a nightmare as his anxiety is through the roof) he crys and screams and begs me not not to make him, so I give in perplexed and saddened by his great fear of sleeping alone. The new Dr.wont enterain new meds to help with  his behavior until the current med is down and he is sleeping in his own bed. Im fustrated... he needs something to control his behavior, he has become hyper sexual and making very impulsive decisions, wanting to inflict hurt on anyone whom he perceives as treating him poorly, no talking about it just lashing out. The other day I caught him sneaking out of the house with a rubber band gun with the intention of ambushing a little boy who pushed his brother down... thats assult, he could get in real trouble, thank God I figured out what he was about to do. Last night he was becoming "weird" with his brother in the bath...guess its time for a shower alone. The fits of rage are just fustrating, I just let him cry and scream it out, and he is so remorseful after but is unable to stop when he is in the midst of it. I pray he doesnt get in trouble in school, hes usally stellar grades dropped at the end of last year and he spent the last 6 weeks of school eating lunch in the office because he couldnt control his behaviors in the lunch room, I felt so bad for him, I dont want a repeat of last year. We have tried so many drugs I have no idea what this new Dr. has in mind for meds as he wont tell me....but if it requires sleeping in his own room and less sleeping meds I dont see how we will ever find out as he just cant seem to do it. Any suggestions out there to help your sleepless child to get rest. We have a bed time routine but most nights he figures out a way to disrupt it. So not only is he up but so are the other 2 kids...sigh...just at a loss.

Love Zacks mom

Clinical Trauma

Monday I had clinical (where you work in a facility gaining experiance) I didnt see it comeing, I mean I did, but I didnt. I had to watch trach care on a young man he was 32. Its not easy watching nor doing Trach care on someone, you literally take there breath away while you are suctioning thier throat through the hole in thier neck they cant breath, first they cough then they are left trying to get air for about 15 seconds while you suction the mucus out of thier trachea. Im not a wimp, maybe a little scared and allot nervous, but I know its just first time jitters, but this patient really hit a nerve. Like I said he was 32, he had been non responsive, living in a contractered state (where his muscles are all tight and he cant relax) for 14 years. He has a G tube, and oxygen and can doing nothing but roll his eyes looking at nothing, its a blank uncontrollable movement of his eyes. He is for all intensive purposes a vegatable, he is kept that way by his mother, who visits everyday and still believes their is hope, yes its hard to see anyone that way but he was particularly hard. 14 years ago David hung himself and it didnt work, he was found and they brought him back to "life" if you can call it that. It hit home and hit hard. Most of you all know Mike humg himself. All I could and am still thinking about is if this poor tortured soul was so depressed and unwell that he attempted suicide there is no way he would want to be kept alive by these measures, if he could he would probably scream "help me please, end this" but he cant, he can do knowing, maybe hes unaware of the state hes in, but maybe he is, maybe that poor soul is just praying that someone decieds to end this torture because hes at thier mercy. I broke down. No one ever thinks of what could happen if your action to commit suicide doesnt work, what happens after that, when you are left alive, but damaged, by the extreme way David is or by something else that may not be as severe maybe you can still walk but your brain is fuctioning at a much lower level, maybe it leaves you disabled, no one ever talks about it, everyone says you have something to live for dont do it, but maybe just maybe if you told people it doesnt always work, sometimes you will be left on this in a body and mind you dont know and will be forever tortured and miserable. I dont know what to say, Im distressed from what I saw and what it means and distressed by this poor soul is been left with, a shell of a body and no mind, Please Please talk about this, please tell people please tell what can happen, its devastating whether you die and even if you live.

Tara

Lithium... Take 2

In a desperate panic I called Zacks doctor Tuesday night, it had been going on weeks of what had/has been incrediably painful moments where I completely realized something is really wrong with my son. His doctor has disagreed with many times with my refusal to put Zack on Lithium, he indulged me in trying drug after countless drug all in the avoidance of the dreaded Lithium. Yes it the blood draws, how horriable those are going to be, and all the research I have done but it was the fear, the fear that if that drug didnt work nothing would and I really didnt want to have the feeling that there is nothing left to try. That if this hardcore, mood stabilizing Bi-Polar drug didnt work, what would be left for me to do??

It all came to a head Tuesaday night as Zack sat in the the backseat of the car and repeated some unintelageable word over and over again, I saw it, that this, all of this wasnt fair to him, he is suffering, hes afraid, hes angry, hes confused, he is out of control, and so I made the decision to start Lithium.

I left a frantic message on his doctors cell and by 10 am on Wed. The script was in the pharmacy and I knew by that night I would be trying something that I have deemed the last resort. I had a million questions, so many possiable side effects...his doctor doesnt believe that this has to be a permanent thing that maybe in an few years if/when he is stable it could be tapered and maybe replaced with a lesser drug, I sure is hell hope so, but what I hope more then anything right now is that my son, my heart recieve some relief, I am makeing sure to be keeping him hydrated and staying away from caffine and not changing any salt intake, "keep this as they are in regaurds to his diet, just make sure he stays hydrated during his tae kwan do and play times" so that is what Im going to do, and pray that my Last resort drug brings us all a little peace and possiably a happier Holiday season, prayers welcome as so is any advice for anyone who has a child on Lithium, hes 7, Im sure I have said that before, he also wieghs 85 pounds so he is not small by anymeans, but hes not a grown up either...okay, thanks to all who have read this.

Love, Zacks mom

Lithium

I have exhausted all of the options, last night in cries of despair, the dreaded words that I hadnt heard in nearly a year, "I want to kill myself, just kill me please, please kill me", his dx adhd, with bipolar traits since you cant dx a 7 yr old as bipolar, but considering he has(d)2 parents with bipolar odds stand pretty well that he too has this dreaded disease, his dr really wants him on the Lithium as his moods and behaior are completely unstable, hes hypersexual, rageful, anxious, fits of tears and panic non stop movement, getting in trouble in school, ... and know as I type hes starting to have a fit so I must sign off...encouragement...advice on blood draws, I cant beleieve this is happening.
zacks mom

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.

He is...

Miserable, Unhappy, Depressed and hating his body...he s six and should not have to deal with this shit, We see Dr N on the 18th and I am requesting a med change, its going to be a trial and error and no doubt hard on all of us, but my child is unhappy and the whole point of this is to get back my happy little boy, Yes we were all suffering, but now ( we still are in other ways) he is alone or at least he feels like he is...he cries allot and I am sad for him and well its probably going to be another long road, I just pray his sleep doesnt get to messed up, he needs his sleep, Im nervous but for him I will do anything, This whole thing sucks, its not fair, none of it, him being ill, and the meds doing screwy thing to a six yr old....buck up Tara, your in this for the long haul...

Love, Zacks mom