Archive for October, 2009

The Nightmare Continues

October 22, 2009

A loves the bloodwork and the EKG. We head to IHOP- D meets us there. A seems to be getting a little agitated. The food can’t get to him fast enough. We finally eat and head off to toys r s. We walk in and I quickly realize this is a set up for disaster. He wanders up and down every aisle. He starts getting worried htat he won’t find something for under $15. What will Dr. G say if he breaks her $15 rule? I try every trick in the book to try and get him to pick something. He is getting more and more agitated and I am panicking. We find a remote control spider but is’s $20. I tell him its okay and we get out of the store. In the car he cries because we broke the doctor’s rule. I tell him he can pay me back the $15. And if he doesn’t have it he can do chores to earn the money. He is okay with that. I make sure to by batteries so when we get home he can play with his spider. Get home and he does play for a few minutes. Then he is done. Its time to go to school. I encourage him that he can do it- its just a few hours. I don’t let on, but I really wonder if he can do it. It seems like we are asking so much of him. I remember the prozac days and things were so easy. If the meds did the trick, is it fair to make him do it sans medication? I am in over my head. I drive him to school. He won’t get out. I get the principal who brings a counselor with him. they open the car door and talk to him about coming in. He cries and cries. the counselor asks if we have tried abilify. I wonder, again, why these people don’t realize how dangerous it is for them to be making medical statements like that. The principal and counselor decide A is too upset to come to school. Off we go.

A comes on my errands with me. We stop at the drug store (this is his version of Toys R Us!) He demands I buy him something that costs $15. I refuse. He loses it. so much. more than I have ever seen. He cries at first and people think he is cute (I still don’t know why a giant 9 year old crying in a store because he can’t have something is cute.) Then his face changes and he starts to kick and scream and throws things off the shelves. I am trying to control him. Finally I decide if I walk out he will follow. He does.

We get into the car and he cries and tells me he wants to die. “Please take me to the hospital Mommy, please!” I call Dr. C and she says she doesn’t want to give him any medication because she wants to keep his system clear for Dr g’s return in a few days. I ask when I know we need to go to the hospital. She replies, “Ah, the age old question. There really is no answer.” I basically hang up on her. A is starting to get aggressive in the car. We go home. I calm him down and give him a risperdol. He doesn’t sleep this time. D comes home early from work. My life is falling apart. No one can help me. I am drowning in this. A tries to push D down the stairs. Turns into another night of me holding A until he sleeps.

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Survival Mode

October 21, 2009

He willingly goes to school in the morning. I decide not to give him the meds until he comes home. good thing- I gave him 1/2 the prescribed amount (.25) and he fell asleep immediately (5pm and slept till morning)

The next few days are mixed- some days A goes to school, other days he won’t. We are seeing Dr. Greenberg now and her appointments are scheduled mid day– purposely she tells me. She hopes that if he only has to go to school for half a day for a legitimate reason it will take the pressure off and he will go willingly.

David and I see Dr. G for an initial appointment — we answer her questions. I think I like her. We tell her about the ER visit. She wants to see him immediately. D goes to work I go and get A out of school. He answers her questions and they like each other. She sees him one more time that week and then tells me she is going out-of-town the following week but cannot leave her covering doc with the care of a new patient who is unstable and on no meds. Dr C agrees to take charge while Dr G is away.

The weekend is hard and crazy as usual. I spend my waking and some of my sleeping hours keeping A from being nuts and making sure H and B are okay–sometimes I wonder if my marriage is falling apart. sometimes I wonder how I got so lucky to marry D. Sometimes I wonder how he got so lucky to marry me. Sometimes  I wonder how he can put up with me telling him how to do everything. Sometimes I wonder how I can put up with being married to a man who needs me to tell him how to do everything.

Monday I wake up and hold my breath– will A go to school? He does! YAHOO! D has a day off, so we can do after school pickup in separate cars– a technique we have been using more and more. Everyone comes home safely and its homework time. Ugh A is sooo needy. Maybe a little more than usual today. I set him up at his desk with his pencil and work and hear the conflicting voices of  school staff .MS- his case manager at school, “Oh Mrs. P,  it is wonderful that you get all his homework tools ready for him. Then the principal chimes in ” You are teaching him learned helplessness.” God dammit I just want him to do his homework. He gets started and I go in to check on H. Before I even get to her I hear the sound of things breaking in his room and him screaming. I go in and there he is tearing his homework folder and his spelling test (40%) into shreds and throwing things. “I CAN’T DO THIS! EVERYONE THINKS I CAN AND I CAN’T” Just then B comes in to see what all the noise is about. A lunges for him but I catch him and hold him. One of the hardest things during A’s rages is that B wants to be there. He’ll just stand there watching. Or he’ll jump on my back while I have A on the floor. D comes and takes B away. I hold  A.  Any attempts at letting A free result in him attacking a sib or me or D. So I don’t let go. He calms down. I keep holding and we talk. he says he can’t got to school. I tell him it’s okay we need to get blood work and an EKG done for Dr. G in the morning anyway. He falls asleep. 

A and I leave very early because he needs his blood work done before he eats. He is excited because Dr. G told him after the blood work he gets to pick his favorite restaurant (IHOP,) and then gets to pick a toy- $15- at Toys R Us. She gives him specific instructions and I like that. She gets him. She tells him he will need blood work a lot as her patient and that is the routine we will always follow, but after the first blood test the toys can only cost $5.

Mobile Response

October 20, 2009

When I pick A up from school each afternoon he is a monster. The minute he sees me he throws his bookbag at me- demands something, usually a snack and then melts down because it isn’t what he wanted…

One particular day I came to get him from school and immediately he crashed himself onto me and bit me. I got him off of me and asked him what was wrong. He demanded a snack and I told him it was in the car. He started to kick and punch me. Somehow I managed to make it to where H was waiting for us (they get dismissed at the same exit but she walks around back to meet me because she doesn’t want to wait with A. Sometimes she is smarter than me (well, more than sometimes!) I tell A that I have a phone number to a therapist who will come to us if he is out of control and they will help him feel better. He asks me to call. I don’t, but I doubl nad triple check to make sure I have the mobile response number.

The minute A sees H he punches her. I grab him and tell her to run to the car. I don’t even know how (or why!) I managed to drive to the JCC–I do remember A hurting H in the car. I wanted H to have anormal afternoon- she had a swim lesson and Ben was at the JCC waiting to be picked up from school. A was mad because I didn’t bring his bathing suit, didn’t have the right snack…

We make it in to the JCC and H goes to swimming. I am able to calm A down by giving him moneyt o get a snack of his choice at the cafe while I pick up B. A gets his snack, sees B and immediately starts bothering him. I keep them separate, btu the minute I let my gueard down he is hitting, pushing, etc.

I send word to H in the pool to come out and get herself dressed and meet us in the lobby- no way I can manage helping her, keeping A calm and talking to B about his great day in Kindergarten all at the same time. Now A is hurting A and H with a menacing smile. Immediately after he begins to cry and say he hates himself. Once hte crying stops he begins his aggressive behaviors again. I hold him and rely on H to help B with what he needs. I tell A we can’t go home till he promises he won’t hurt anyone in the car. He says he can’t make that promise. I feel desperate to get home –its a two minute drive. Finally A says he can do it without hurting anyone. H says no way she will get in the car with him. (See, she is smarter than me again!) I tell her that we will call Bubbie and she and B can go home with her– H’s response, “Only if she will take me shopping.” There is no way I am going to call my mom and tell her that not only cannot I not control one of my kids, but the one I am trying to protect will only accept protection if the mall is involved. I decide to call mobile response. Someone will be here in an hour.

The three kids and I sit in the lobby of the JCC- H and b to one side and A sitting with me and I am restraining him- but tryign to make it look “normal.” I notice a flyer at the front desk– tonight is “Jewish Educator Night.” And slowly, every teacher my children have ever had from preschool, camp and Schechter begins to walk through the JCC doors , passed my family and into the meeting– and everyone is so happy to see us and we all smile and pretend we aren’t crazy. Even A. THis is so bizarre.

R from mobile response show up and we go to the gym– A stands over B and pushes him. B falls on floor crying. I look at Roberta and cry. She talks to A. The to both of us. Tells me I should take A to hospital. I keep thinking that just because you hit and punch doesn’t mean you need a hospital- no one ever died from that. I ask her to ask A if he wants to hurt himself and I walk away. He tells her that he wants to punch himself. This sounds so dumb to me. You take a kid to a hospital if he wants to KILL himself, not punch himself to death. I ask if this was her own child would she take him and she said yes. I tell A that I think if we can get him home and give him his melatonin he will go to sleep and feel better in the morning. He tells me that if he can go to the hospital and they can make him stop feeling like this to please take him. So we go. I call my mom for the other kids. I call my friend S who graciously leaves her 3 with her husband and agrees to meet me at the JCC and come to the ER with us. I call D and tell him not to leave work yet because I have S and the kids have my mom.

A is calming down on the ride. We arrive and I start wondering what I tell the guy at the front desk? I’ve been to the ER so many times– for various body parts of my kids’ to be sewn, glued and stapled back on, but never for something like this. S takes Abe and sits down and I tell the guy at the desk that my son wants to hurt himself. God that sounds awful. What kind of mother lets her kid live a life that brings him down this path?

A is now quite comforatble– he has always loved hospitals. the week we spent together in the hospital when he had meningitis is his “favorite week” of his life. He says he is feeling much better. I look up and there is B. A woman I have known for a few years through business but have had some moments of friendship with as well. Her husband is sick. I wish him a speedy recovery. I quickly decide to tell her about A. I get a quick flash of remembering she may have had similar experience. I am right. She tells me her, now adult, son is bipolar and if there is anything she can do she will help us. Wow, serendipity.

They put us in the (very small) pediatric waiting room where you can almost see the H1N1 germs floating around. Two small kids are playing – S, A and I sit on the floor because there are no more seats. I can sense A’s agitation rising again. I don’t know if I could physically see him change or I just ‘know’ that he can’t stand being around these kids. We offer to move into the hallway but he says it is ok.

Eventually we are brought to a room where we wait for a crisis counselor. I learn later that there are psychiatric catchment hospitals that are equipped with psychiatrists and other resources– this isn’t one of them. The crisis worker comes in and asks lots of questions. A answers most of them. “Who is your psychiatrist.” “I see a psychopharacologist.” “A what?” “You know, a p s y c h o p h a r m a c o l o g i st. PSYCHO for your brain and pharmacologist for medication.” The crisis counselor writes it down on her clipboard and S and I wonder what to do when a suicidal 9 year old is smarter than the counselor.

During the course of the afternoon I had left messages fro Dr C. She calls back now and says she will take over care and speaks with ER doc- says discharge on risperdol. I ask ER doc about it. He says in the 9 years he has been there he has never written a script for it. Oy. We came to the wrong place. S asks me what I think about giving A the meds. I tell her I don’t know enough about it but I want to comply with the doc. and I want to make A better. “if you feel pressure to make an important decision, then its the wrong time to make it.” She advises we bring A home and get him to bed. I can decide about meds in the AM. I refuse the meds and we drive home — he falls asleep in the car.

Losing Fall

October 16, 2009

I don’t know how it went from summer to winter– it feels like I lost Fall. Last I remember, we were at the shore buying school supplies at a local drug store. Now my boy is hundreds of miles from home in a psych hospital FOR THE THIRD TIME! It is unimagineable–surreal. 

I bought lots of books about bipolar kids and read the most important chapters– skipping over the parts that “didn’t apply” like chapters on hospitalization–surely I wouldn’t need that information, that is only for the most “severe” cases and A is mild, if he even does have bipolar. Ha…

So summer came to an end and the kids started school. B began full day Kindergarten at the JCC–its like a trial run because he will be in K again next year in public school, but he missed the cut off by two weeks this year. H is in third grade! Can’t believe it! She is excited about school and friends and sports. A started fourth grade–a ’senior’ in our town! He will move to the middle school next year. I meet with his new teacher and give her a little background about his learning disabilities and social issues, etc. I am very honest with her that we feel he needs more supports than the school is giving. She seems so warm and caring. Wow, maybe this will be a great year, great teacher, and maybe with the new medication regime we can get his ADHD symptoms under control.

Spoke with Dr. C on the phone just prior to going to the shore and we decide to keep A on 15mg of prozac (increased past Spring because of increased agitation/mild aggression/exec functioning issues,) and add Stratterra–she says it’s a good choice because it’s not a stimulant and after trying 5 or 6 different stimulants, we know he can’t take those. She tells me to be patient–it can take up to 3 weeks to see any improvement.

We all loved our little beach house. he beach was great- as each day ended we never wanted to pack up! A mostly watched tv when we were back at the house. Hannah read, watched some tv, played outside. Ben played ‘pirate ship’ and built himself an elaborate ship in the yard from a kayak old, towels and other things he could easily find. It seemed like an ideal week. 

The only glitch was, of course, A. He was his usual irritable self. Only now his food ‘issues’ were back. We did cook at home often, but when we did go out it was disasterours– either the place had no spaghetti and meatballs or there was too much sauce, not enough sauce, spaghetti was too mushy, too hard…I dealt with it in a mixed way- sometimes anger, sometimes compassion– one day, after he was sent to the car while the rest of the family ate dinner, because he had a tantrum in the restaurant, I brought him some chicken nuggets and sat int eh car with him while he cried. Compassion seems the best way, but of course, in my head I hear the voices of the past telling me “be firm, he’s manipulating you, you’re teaching him learned helplessness…” Ugh I am so conflicted.

There is the usual strife in our (beach)house. H and B complain that A always gets the show on tv that he wants. A complains that they are too noisy, too close, too stupid..I am annoyed at David at times because he doesnt have the patience A needs and of course, i don’t either .)

Part of the trip I am a single mom as D had to go back home to work. I am scared. What if A gets really out of control and needs my full attention but Hand B do also? I have my phone, my GPS, and we are living a simple life– it should be all good. Until my phone breaks and B awakens in the middle of the night and can’t breath. I call D collect from the house phone (who knew collect calls now cost $10?) He talks me through it. In the morning we all go to urgent care– B has bronchitis. From there we head to a bug museum and meet my mom–its a nice break from sand. The three kids are a 2 man job so it is a welcome relief to have my mom there– even if she thinks I am not insisting the kids engage more in the exhibits– I am in the “why fight nature” mode and allow them to skim the museum and spend time at the exhibits they are most attracted to.

When we get back to the beach house we decide a late afternoon beach trip sounds great. When we get there ,there are bout 10 kids digging huge tremendous holes and I encourage my kids to join them–A prefers not too, but I convince him its fun to be a part of something so big. After working hard on his hole, he is almost neck-deep! Another boy jumps in and announces, “I am the hole inspector!” A tells him to get out. The boy PUNCHES A in the eye! A takes the three foot shovel (wooden handle and hard plastic shovel end) and starts to beat the kid! Of course the other mother only sees A’s part of the incident. I jump in and pull him off. A calms down and we avoid other children. I feel like i want to throw up. What the hell happened? Clearly the other kid was wrong, but A could have killed him. I ask him about it and he said, “He punched me and I was defending myself. THIS WAS A CASE OF SELF DEFENSE.” I try to explain to him that in self-defense you do what you need to do to get away from the attacker, not kill him.  Later I ask H what she would have done– she said she would have either cried or pushed the kid and ran away. Hmmm that seems much more reasonable.

Everyday I check for signs the strattera is working– hard to tell on the attention front since school hasnt started. We are hoping for changes in behavior too–none so far, except, could it be? Is he worse? More aggressive? I doubt myself and decide its my imagination.

School starts but teacher doesn’t know A so can’t help with knowing how he is doing on new meds. Three weeks pass and I speak with Dr. C on the phone–still no improvement. She hesitates and asks, “Lucy, do you think he could be worse?” YESSSSS! YES he is worse- David confirms. I tell Dr C I didn’t know it was possible…she says, “Yes, its possible-but really the only people with this reaction are people with bipolar disorder.” I stop and blurt out,”Well, my dad is bipolar. Could this mean A is too?” She tells me if he were an adult she would say a definitive yes, but with kids it’s not so clear-cut. 

She would like to start him on abilify. I ask if we can keep him on just the prozac, give him a chance to “recover” from the straterra. Dr C agrees.

Its Rosh Hashanna. D goes to a lot of the services alone or take H and B. We venture out to one service as a family. Kids and I end up in babysitting. A is such a pest – will not leave H alone. He goes into services with B and D and drives them crazy. D can’t get A to stop touching b-not hurting- just poking, etc. We leave- I go back to gt forgotten items. I come out and see D dragging A away and H and B look lost. I come running over and get them–no idea what has transpired. But they are scared and A is out of control. D is mad. We get to the car and H and B get in. We speak with A out of the car– you have to listen you can’t bother your brother and sister. It’s not ok to hurt other people. A is screaming and he doesn’t care what we say. Says he is going to get a knife and kill H. The blood drains out of my face. I threaten to take away his clarinet and he will have to explain to music teacher at school why he can’t have it. Of course this escalates him more. D is good. He is calm and shooting me looks like I have lost my mind. I have.

We go home and I lay with A and he cries and cries tells me he can’t control himself and has horrible feelings. He wants to die.

Dr C says start Abilify ASAP. I do and we wait. Nothing changes except, could it be? Is A having anxiety again? The prozac “cured” that and in a year and a half it never came back- we forgot about it! A says he doesn’t remember ever having a problem separating, or being fearful. A few days – maybe a week on abilify and A tells me,”I feel scared on the inside, all over, for no reason.” Email Dr C who says that can’t happen from abilify.

We see her face to face. A sits down and says, “The abilify is making me crazy.” Dr. C agrees and realizes at the dose he is on it acted like an add-on antidepressant and it was as if we had increased the prozac which could make A manic. So she INCREASES the dose to a mood stabilizing dose. She assures me we will now have peace in the house. A and I are so happy.

We drive home. We talk about things. He tells me the teacher is reading a book aloud in school and it is sad and he sits at his desk and cries. I tell him maybe we should talk to her about having him out of the room when she reads it because when he is having trouble with his mood (first time we ever discuss it) sometimes its good not to be exposed to things that make him sad. He replied, “So I don’t feel suicidal again?”  WHOA. Never heard this before? I ask A if he knows what suicidal means. “Duh, mom, when you want to kill yourself.” “have you felt like this before?” I ask. He says yes, but can’t remember when he did. Doesn’t know if it was last year, a month ago, but it wasn’t within the last few days. I tell him if he ever feels this way again he has to tell me or D and we will keep him safe.

Higher dose of abilify that night. He wakes up int he morning and can’t stop moving. He goes out the front door, back in, repeatedly and then starts rolling around on the living room coffee table. The only word to describe it is “agitated.”Agitated beyond belief…

D takes A out for the day. H and B and I go to party store to shop for Ben’s birthday stuff. Dr C calls me back while we are there and I tell her what is happening. She says sounds like a rare side effect called _______. I want to scream at her. How many more rare side effects can this poor kid have and why doesn’t anyone ever warn me? She says we need to increase the abilify. I almost throw up. I explain that it seems counter intuitive to give him more of what is making him crazy. She agrees. I suggest maybe we take him off of everything. I;ve been reading and now understand what is going on- A is bipolar and he can’t be on ssris- he needs to be on a mood stabilizer. Dr C agrees says we need a baseline–don’t taper him down- the prozac tapers itself.

Ive been reading Dr Rosalie Greenberg’s book and it is as if she has lived in our house. Ever page completely describes my life, my child, my home, my family. She is only 15 minutes from our house. I call her and she gets us in the following week. 

A is crazy. He is raging. He won’t go to school and begs for medicine so he can go again. Of course school personnel hears this and is all over me- I tell him too much and am making him anxious. He needs to know he can go to school without meds…well clearly he cannot.

He threw up at the front door, almost in principal’s office. The principal tries to encourage him, “You can do this– I mean, next year you are going to a new school, a BIG one! How will you do that if you can’t come here today?”  It takes a lot of self control not to yell at her. But it reconfirms my feeling that A needs to be protected from people here.

I sit with him at his OT session and convince him that he is ok and he can make it to lunch and then I will pick him up. I walk away and as I get to the front door he crashes into me hysterical. I decide to get his work and take him home. I am convinced this poor kid needs to get out of there before other kids see him and before things get worse. We go home, he eats, he does his work. We go to the dog park and he says he feels like he can go to school- he goes for the last hour.