Thanks!

I am in awe of how many people read my blog and really care about our family. Sometimes the comments that come in just blow me away. Sometimes I end up in tears. And a lot of times I learn so much. So I just wanted to say thank you to all that read, care, respond, and pray. You will never know just how much it means to me. I just recently told my mom, "It is so cool to know that there are people across the country reading, caring, and praying." I just hope that my blog helps someone else as much as it has helped me. So, thanks everybody. You all are very appreciated.

Aderall Working and a New Tool

On Wednesday right after the appointment, I gave Kenzie the aderall after school. I am very pleased to say that it is working. No more hyperactviity or impulsiveness. She is very calm and easy to be around. She can still be a little irritable, but for the most part it is good. She still has a lot of issues to work out with Tori. I am hoping that the therapist will help with this. Now if we can just get the mornings better and the irritable mood better. I went on the website that the therapist has and the name of the approach she uses with children is called the Nutured Heart Approach. It talks about how when a child is doing negative behavior that we give lots of attention to that behavior to try and correct it. That in return gives them attention which most of these kids crave so it becomes a cycle. They act out; they get more attention. This program talks about how to give less attention to the negative behavior and make more opportunities for good behavior so you can give them positive attention. That is it in a nutshell. I am sure there is much more to it. I am excited to learn more. But from the little I read I am already looking for good behavior and really emphasizing that, praising, and rewarding. I am also really trying to spend quality time with my kids. This is so hard when there are a million other things that need to be done. Again, I hope the therapist will help me balance all of this.

Speaking of balancing, my husband gave me a great tool that has helped me with my lack of organization and getting things accomplished. Here is what he told me to do: List each morning three things that you want to get done that day and then prioritize them. Write them down so you will not forget or get distracted. This part is crucial-when I have forgotten to do this step I easily forget what the three things were and then I get distracted and end up doing other things. After you do each item, cross it off and move on to the next one. When I have done this, it has helped me so much. I really feel like I accomplished something that day and that helps with my depression as well. I just need to be better about writing them down. Thanks, honey!

Very Sucessful Appointment, Finally!

Today as many of you know we went to the Melmed Center and saw a psychiatric nurse practitioner. She was amazing. Finally, we found somebody who cares. She was very thorough. She asked McKenzie very good questions, and she asked us good questions. She listened and did not talk down to us. She is very up on childhood bipolar and told us about the cabf website which we already knew about but it was good to know that she was very familar with it. When we asked if she thought she could help us, she replied, "I would like a chance. If I cannot help I will let you know." She even got us in sooner for our next appointment by giving up her lunch hour or dictation hour. WoW! Someone who is willing to go the extra mile! She does believe that McKenzie has bipolar with ADHD and anxiety. She also looked into Aspergers which is also a possibility. She had us do a survey test and it rated "high" for Aspergers. There was also very high, moderate, and low. She is going to be investigating that too. She gave us a name of an in home therapist-someone who will come to our house, observe, and help us. She went up 50 more mg. in the seroquel and gave her 10 mg. of aderall for after school to help with the hyperactivity and impulsiveness. She also wants us to do an OT evaluation to test for the sensing issues (aspergers) to see if that would help as well. See what I mean, she was very thorough. She even gave us a mild sedative to give her when she rages if we feel we need too. I know we still have a ways to go and that this change in medication may or may not be the answer but it is a start. And I feel like finally we have somebody who really cares about our little girl and wants to help her. Praise God! She even gave us a hug at the end and teared up when I did. I am so very hopeful.

Bad Rage

This morning Kenzie had a very bad rage. I am not even sure what caused it. It was like she woke up that way. Screaming, cursing, pushing, kicking the back of the car seat, and even threats of "I just want to die!" "I do not want to be here anymore!" It got so bad that I had to pull the car over and wait. Then I realized I'd better call my carpool friend and let her know we were running late. When my friend answered the phone I almost started crying and Kenzie could hear me. Well, that triggered it and she just suddenly stopped screaming and kicking and started crying and saying she was sorry. It was like she was coming down from a high. It was like something you see in a movie. It left me shaking and mentally exhausted by 7:15 a.m.! I just do not know what to do in those circumstances. I start by taking away her privileges and then it just escalates and before you know it all of her privileges are gone and she is stuck in her room when she comes home from school. I do not know what else to do. But I know that I have to teach her that acting like that causes consequences. Because when she gets older those consequences will look very different like no one wanting to be around her or loosing her job, not ever marrying, etc. I know part of her cannot control what is going on in her brain but she seems to be able to turn it off and on when she is around other people. She doesn't have these rages at school. So, why just around us? The whole thing is yucky for a lack of a better word. I could think of others but I won't write them. It just reminds me of how much I need Christ and how much she needs the Savior. I hope she can figure that out through all of this. Melmed is tomorrow. Waiting and hoping...

Hyper!

Lately Kenz has been so hyper especially in the early morning and the late afternoon and evening. Of course, this is when her ADHD medicine wears off. Some people think it is a rebound effect, meaning it is worse than when she is not on the medicine. I think it is just because it has worn off. Because when she was off the medicine the hyperactivity and impulsiveness was just spread across the day. So I am not sure which is worse dealing with it all day or dealing with it intensely for a shorter period of time. The 25 mg. of seroquel that she is suppose to take after school does nothing but make her more hungry at dinnertime. The hyperactivity is driving me crazy. At night I want to settle down, be calm and quiet. That is the last thing Kenzie is. She is so wound up that she giggles this hyper giggle under her breath like she is so excited about something that she can not contain it. The problem is there is nothing to be excited about. She pounces on beds, picks on Tori, gets in people's faces and is extrememly annoying. She takes Addyson and swings her around and around in her arms until they are both dizzy. She jumps up and down with Addy in her arms and plays wildly with her. (I am watching every second of this and I take her if it gets to much which I almost always have to do) Thank goodness Addyson seems to like this which scares me in itself. I try not to think about it-but the question is there... Will Addyson have these same issues? Will she have to deal with mental illness? I pray every night over her brain asking God to develop it healthy. I do know that I will have to accept whatever card He deals me. And I also know that God will be there every step of the way no matter what. But back to Kenzie and her hyperactivity... here is an example, tonight Tori called her into the bathroom to show her something cute Addy was doing and when I came in to check on them she was slapping Tori's head hard and then Addyson's too-not hard but playful like-back and forth. At first it was gentle with Tori then it got harder and harder and faster and faster-that was when Tori started complaining. I do not know if I handled it right or not but I started hitting Kenzie's head too. That didn't help, she kept going like it was a game. The only way I got her to stop was tell her if she did not then dance would be taken away. She wants me to spend time with her and that is the last thing I want to do when she is like this. It breaks my heart. I try telling her but she seems not to be able to help it. I really hope that we can figure out something that will solve this problem. I do know that the intuniv 3 mg. helped with this. However at what risk to her blood pressure. There has to be something else. My patience is running out. We go to Melmed on Wed. I am praying it is a good fit and is the beginning of some real help.

Behavior Checklists

I hate filling out those behavior checklists for Kenzie. I can't even tell you how many I have filled out over the last four years. And now another packet full of them for Melmed Center. I am glad for the fact that they want to know as much as possible but it is painful filling them out because it just reminds me of all of her issues. And sometimes that makes me so sad. I guess sometimes because we live with it day in and out we forget the little stuff that we encounter daily. Which is good to some extreme, but it is also good to be reminded or rather be able to let the professionals know all of it. So even though I hate filling them out I do know that they are there to help figure her out and that is what we so desperately want. Thank goodness there was a part where I had to describe her strengths. This is what I wrote: She is a beautiful and talented dancer. She loves to help other people. She likes to feel needed. She loves little children and babies and she is great with them. She accepts all kinds of people and tries really hard to reach out to those who are struggling especially if she sees that they are being made fun of. She loves to give gifts to others. She has a big heart and when people that she loves are having a hard time she rises to the occasion and really tries to help or lift their spirits. She wants to be healthy and is very brave. And she loves her family very much.
Tonight she had a meltdown and was hysterical. I held her in my arms and sang to her like I did when she was a baby. It worked but it also made me cry because I could see her as that precious little baby that was so innocent, happy, and content. I so wish for that for her now.

New Dance Studio

Last night Kenzie tried a new dance studio. For those of you who are reading and don't know that before she left for Hope Ranch, she was on a dance performance team at a dance studio here in town. She has been dancing for straight four in half years and also when she was 4, 5, and 6 she danced then too. She is a beautiful dancer and she says that when she is dancing everything else just goes away. So I know it is good for her. The hard part is getting her there. For whatever reason it causes her great stress to get ready for dance class and to be on time. Right before she left in October it was nearly impossible to get her there. It would cause almost daily meltdowns. She was taking six hours of dance a week. So because of all of this we have been hesitate to put her back in dance classes. We wanted her to have a fresh start at a new studio where they did not know her past and all of her issues so they could just evaluate her on her dance and nothing else. So last night she just tried one class, jazz, to see where they would place her and if she liked it. Change is hard for her so even though she really wanted to go back to dancing I think being at a new place was difficult. The anxiety definitely was there. She had her usual fit about her hair right before we had to leave. However, she did make it on time and she does want to go back. I was very impressed with the new studio. We will have to start slowly and see how she does. I hope she does well and handles it okay. I love watching her dance and I think it does wonders for her.

Melmed Center

A friend of mine suggested going to Melmed Center here in Scottsdale. We went there in the very beginning and this is where she was first diagnosed four years ago. We really liked it but left because our insurance changed. Well, now our insurance does not cover any mental health at all so it does not matter where we go as far as that is concerned. I don't know why I did not think of going back there, but I think it was because I thought that Kenzie was too complicated for them. However, I decided to call them to see if maybe it would be a fit. They told me that they could definitely give her a diagnosis and if it was "extreme bipolar" they would refer her out. However, they could handle all other issues-ADHD, anxiety, mood disorders, ODD. They are a team of specialists-developmental pediatricians, psychologists, psychiatric nurse practitioners, etc. who work together to come up with a diagnosis and a care plan for them and they really seem to care about their patients. Anyway, the down side is they do not have a psychiatrist on staff. So I am asking for anyone who would like to give their opinion on this facility to do so. You can go to their website -www.melmedcenter.com and look and if you have an opinion, please share. We do have a two hour appointment on Feb. 24th-it was a cancellation and we are so blessed to get one this quickly as the first time I called they did not have one until April 20th. Our appointment will be with a psychiatric nurse practitioner-Laura Jensen. We can cancel up to 48 hours prior. So I am still researching and deciding that is why I am asking for anyone who is willing to give an opinion on the place.

We won't be going back...

...that is to that psychiatrist-the one we saw yesterday. In my opinion that was one of the worst doctor's appointment we have ever had. I do not even know how to explain it. But I will try.

First of all he said that McKenzie could not be bipolar because there was no bipolar in our immediate blood line-brother, sister, or parents. I guess great grandparents do not count and depression does not either. But according to what I have read depression in the blood line can also be an indicator. I think also that I have read that that bipolar does not have to be in the blood line. Todd has grandparents that were alcoholics which can be an indicator of bipolar. I need to research this some more. If anybody knows, please share. Whether she is or not there are still mood issues that need to be addressed and he only addressed the ADHD. He did nothing to address the anxiety either. He asked Todd and I a bunch of questions about ourselves and very little about McKenzie. His thought process was that she was a mixture of us so if he found about us then he would understand her better. From what we got from him in a nutshell was that we did not understand ADHD and that we needed to change our environment to accommodate her. He basically said that if we wanted the rages to stop then we needed to figure out what triggered them and alter those triggers or stop them. Later I thought about that and thought how do I stop the trigger of Tori being sick, or do I let her be late all the time to school with no consequences, or let her watch as much T.V. as she wants and never go to bed at a decent hour and eat whatever she wants whenever she wants. That is crazy-it teaches her nothing and especially not how to deal with rules and limits. It also is a terrible example for our other children. He then proceeded to ask me what caused her rages if homework was not an issue. He assumed without asking that homework was an issue which it is not. I told him that one of the things that caused them was when she was told to get off the computer after her time was up. He then proceeded to tell us why not let her stay on the computer if it keeps her out of trouble. And yet, the therapist told us that too much computer and T.V. was not good for her brain. When I told him that, he made a face and said she could learn on the computer-that there was so much to learn. Yea right, webkinz, facebook, and gmail are such good learning tools. He kept asking me when the rages happened and he wanted me to say in the morning and evening only. He was trying to say that the rages were a result of the vyvanse wearing off. This might be the case some of the time. However, I kept telling him that the rages were unpredictable and not always in the morning or evening. He also tried to tell me that the vyvanse could be the cause of her mood issues and yet, when I told him that she was irritable and angry both on and off of the vyvanse, he said, "are you sure?" I felt like he was putting us in a box and not trying to listen and really understand McKenzie. He also did not read the letter that I faxed him until the first 3 minutes of our meeting and then he did not even read it all as I had to explain to him something that was clearly written in the letter. Todd felt he talked in circles. And when Todd asked clarification on something he answered, "Not exactly," and then never explained it further. He cut us off after 30 minutes saying we needed longer but when I told him that I tried to get a longer appointment and was told no he said nothing. He gave her an extra 25 mg. of seroquel in the afternoon when she came home from school to calm her down, told us to get her a new therapist, and that was it. He then proceeded to say come back in two months! Two Months! Forget that dude, we will not be coming back. Why do they not care? Why can't we find somebody who does? This was the head of psychiatry of Phoenix Children's Hospital! Scary! We need someone who is going to listen to us and really care and want to work with us until we figure this out for Kenzie.

First Rage in Awhile

Bad morning-Kenzie had her first bad rage in quite awhile. It was triggered by Tori being sick and getting to stay home. She felt that she had the right to be either late or also get to stay home. Then after that it was just a spiral downward-screaming and ratting and raving about everything. She even went so far as to kick the dashboard with her feet and then hit it too. The worse part was the verbal abuse Tori got all the way to school. Kenzie usually takes it out on Tori and this time it was no exception. She accused Tori of faking being sick. She talked all about how it wasn't fair that Tori always gets all of the attention and how I probably didn't even take her temperature. Which of course, I did. It's bad enough to be sick but then to have your big sister verbally abuse you for 25 minutes is just not fair. I took Tori to get a donut afterwords in hopes that it would help with the wear and tear just a little. I guess in one way it was good that this rage happened as we are seeing the psychiatrist this afternoon. She was doing so much better that I wasn't sure how I was going to adress the situation with the doctor. But now I can explain how she goes through these cycles and you never know what will set her off or if and when it will. It is so unpredictable. But man, do I hate those rages. They are scary and I hate that my other children have to deal with them too. I am an adult and can barely deal with processing that it is the sickness not really her. How can you expect a 7 year old to do that? And a baby just feels the tension and turmoil which I am sure does not help her mood either. The baby fussed most of the way home which she usually does not. You have to wonder if that was the cause of it. This morning I had to vent. Now I am done and off to get my mind set for this afternoon's appointment.

Doing Way Better

The last few days have been really good for Kenzie. It is a nice break from all of the havoc we had the week before. As I said before she does need the vyvanse and it does help her. Her mood is really good right now, but I have no idea for how long. I almost hesitate to write this because I am afraid it will jinx us. Well that's not right...God is in complete control and everything happens for a reason for those who love Him. This is the time when I start doubting again that she has bipolar. Aren't they suppose to swing in and out of the moods all day everyday? I guess that would be a question for other parents who have bipolar kids? So I am asking...do you all have times when your bp child seems almost normal? I guess she still does have all of her little quirks and maybe because it was so bad last week that this week seems so much better like almost normal. But it could be too that we are so use to living with all of it that we don't notice as much anymore. I will say that she has not had any rages or bad emotional meltdowns in the last couple of days. And she has not been that irritable either. So I guess I need to be thankful and take it when I can get it.

Her anxiety is still the same. The other night I realized that she was trying to manipulate me AGAIN right before bedtime. I realized that she is using this tactic to stall so finally, I asked her, " Why do you not want to go to bed?" Her reply at first was, "I do not know." Then I asked her what she was scared of and she said that she was afaid that somebody would take her in the middle of night. She tells us all of the time that this is the reason she says I love you so many times. She wants it to be her last words in case she is taken. She has now expanded this and says I love you to everyone including Addyson even if they are asleep. She sounds like John boy from "The Waltons". My sweeet husband reminded me that I need to be thankful that at 13 she still wants to say "I love you" to us. He is right and I am thankful but I know it is still not normal and that is want is disheartening.

Monday is the appointment with the new psychiatrist. I typed him a letter with all of the medications she has tried, the results and or reactions. I also gave him a summary of where we are today. I faxed it to him on Thursday. I hope he reads it before Monday, but if not, I am taking a copy. Please pray for us on Monday.

Bible Study

Yesterday I went to the Women's Bible Study at my church and just loved it. The teacher was amazing. I learned so much and I am excited to go back. I also shared my journey with McKenzie to my new small group and was thrilled with the warmth and support I got from the ladies. I pray that I will be faithful and continue to go. I know that this will be a tremendous help with my depression and feelings of isolation.

Back on Vyvanse

I guess I have decided she does need the vyvanse more than not. She was much better this afternoon. However, it may be that she needs other medicine to help with her mood or another stimulant or ADHD med. that will help her with those symptoms. I am getting more anxious about the meeting on Monday Feb. 8th at 2:30. I just so badly want it to be a good one and the doctor to be a good fit. But if not we will keep plugging along until we have figured this out. I also want to share that blogging has been such a blessing. I have learned more through this experience than I have in the last four years. It has really shown me that I need a network of parents that are going through the same thing. I really need to find some here in town too. I am sure they are out there. Maybe the doctor knows of a support group or maybe I could start one here.

Oh, and I said that in my next postI would share what my plan was to help with my depression. I have realized that I let the day get away from me and I end up feeling like that I got nothing done which contributes to my depression. I am very disorganized. I found that if I make a plan and write it down then it usually will get done. I stay focused and busy which keeps my mind from engaging on depressing poor me thoughts. I have been doing this and it has helped tremendously already. I also am going to start going to a Bible Study this week. I know that will help as well. God is so good-He never leaves us even when we feel alone and lost.

Discovering the Effects of Vyvanse

Kenzie has been off the vyvanse now for one week and I can now tell what the vyvanse does do for her that is good and what it also does that is not good. Let's start with the good: being on the vyvanse helps McKenz focus and keep her attention directed on one thing at a time. It also helps her not be so impulsive and wild. She is much calmer and not as annoying. But it also causes her to be more irritable, hardly ever laugh, and be more depressed. It is a catch 22-we can't live with it or without it. Crazy-huh? I am going to let her have one more week of vyvanse 40 mg. until Mon. the 8th when we have our psychiatrist appointment. At that time hopefully he will help us figure out how to treat the impulsiveness and the lack of focus without effecting her mood. Oh yeah, the vyvanse curbs her appetite which is good-otherwise she eats 24/7 and is going to be huge at this rate. She does not need that to deal with on top of everything else. She says she hates being hungry all of the time. I am glad I had her go off of it for awhile. It really gave me a lot of info to give the doctor on Monday. Only 6 more days! Please pray for our family, for her, and for the doctor.