Talk about stupid comments. I’m sure most people mean well, but they really don’t know what the heck they are talking about.
Jada had to get labs done to check her Depakote level and a few other things. So there I was sitting at the admitting desk talking to the registration lady. Jada was a little too manic to sit still with me so she was bouncing back and forth between my friend who was in the waiting area and me. Jada told the lady that she sometimes she likes to hit people when she is angry and upset. I was looking at Jada but I can see the lady looking at me with the strangest look ever. Side note: Jada doesn’t often express her thoughts or feelings very often so when she does, I let her talk and I listen. I really don’t care who is around. Any insight I can get into her mind, I do. End side note. So I looked over at the lady who then started back doing what she needed to do. The conversation that took place included the lady asking me if she was good about doing lab work, to which I said yes. The diagnoses code on the lab order said medication management. The lady said something like Jada seems to be a handful. I responded with sometimes she is. Then she said that I have to get a hold on that soon. I was just thinking yeah, okay. I informed the lady that Jada was diagnosed with Bipolar Disorder and ADHD. She couldn’t believe. She said that Jada seems really smart and that was all it was and that doctors want to put labels on all these kids. Yeah okay woman. There is nothing wrong with her. All seven year old girls punch their sisters all the time. All of them have to get held down so that they don’t break themselves or something else. All seven year old girls talk about killing people, especially their sister just because they can’t cope being in the same room as them. Sure lady. She is the average seven year old girl. Sure, she is just misunderstood. Sure. Okay.
It was a pointless battle.
But thinking about it now, I may have missed an opportunity to be an advocate against the stigma that is associated with childhood mental illness. But then again this particular lady seemed to have her opinions set in stone.
Unless you live it, you can’t fully understand what it feels like to have your precious child say and do such awful things. You can’t imagine the pain of watching one kid take their aggravations out on another and fear that maybe they can’t live under the same roof. You can’t imagine the possibility of having to choose between them. You can’t imagine living each day on the edge of a cliff, always on alert, anticipating your child’s next move. You can’t imagine the dread that medications won’t work and the desperate hope that you have to cling to in order to make it through the day without falling over that cliff.
Thursday, July 22, 2010
Hopeless
I started to write about feeling pretty hopeless. Hopeless about Jada’s mood stability and medications. I knew what I was feeling wasn’t really warranted since we hadn’t discussed new med options with Dr. O. Well, today we did.
Let me back up a little. We picked Jada up from camp on Saturday morning. You would expect that after a week away from you that your kid would be excited to see you and come running to you with open arms. The dad behind me got that reaction. Me…not so much. Jada walked over with a little stomp in her step. She did hug me but there was no smile. Then she headed off to the bunk house. From there, she went to swing. I was a bit disappointed but I knew not to let it get to me. There were lots of people and commotion and I attributed her reaction to anxiety. The ride home was not much better. Well the first thirty minutes were great. She talked a bit about camp and the activities. She answered a few questions but was easily getting aggravated by them. So we let her tell us what she wanted us to know and that was that. The drive was full of aggressive behavior from Jada towards Erin. She hit Erin in the nose, which was a first. She kept putting her hands on her and trying to irritate her. It wasn’t pretty. Had Jada not fallen asleep, I would have pulled the car over and put the third row seat up and put one back there.
The next day, Sunday, Jada was all over the place. Very manic and very aggressive. I spent a lot of time separating Erin from Jada to keep her from getting hurt. Jada was spitting on her and on everything. Erin got hit the face, stomach, and arm. After that day, I had had enough and figured Erin had to. My mom came to get Erin for a sleepover. I HATE that Erin has to have a safe place to go. I HATE that Erin doesn’t feel safe around her own sister.
This morning was our appointment with Dr. O and I was very thrilled about it. Jada wasn’t. Dr. O got to see Jada in all her aggressive and agitated glory. I told Dr. O about the behaviors toward her sister and about not sleeping well.
Our options. Since the neuroleptics (Abilify and Geodon) caused dangerously high blood sugars which were very insulin resistant and the excessive weight gain, those are not really good options. Dr. O said that the only place to go from here is Lithium. Jada has not been on Lithium before and quite honestly I am terrified. But as always, I will do what needs to be done. She starts tomorrow. Another level that has to be watched which means more blood work. Just when her Endo starts doing the in office, finger poke A1Cs, Jada then has to start different types of blood work. Dr. O has never put someone as young as Jada on Lithium but I know there are kids out there her age taking it. Dr. O said that we are really out of options. If the Lithium doesn’t have the effect needed, then Jada will have to go back on a neuroleptic and be admitted to the hospital so that her blood sugars can be attacked more aggressively in a controlled environment. Not what I want to hear. I will cross that bridge it need be.
So I have reason to feel hopeless. I have many hopeless thoughts going through my head. The what ifs are endless. What if the Lithium doesn’t work? What if Jada has to go back on the neuroleptics? How much weight will she gain? What if she become toxic on the Lithium? What if no medications work better than now? What if she has to live life being manic? What if nothing helps?
And don’t get me started on the whys!
Let me back up a little. We picked Jada up from camp on Saturday morning. You would expect that after a week away from you that your kid would be excited to see you and come running to you with open arms. The dad behind me got that reaction. Me…not so much. Jada walked over with a little stomp in her step. She did hug me but there was no smile. Then she headed off to the bunk house. From there, she went to swing. I was a bit disappointed but I knew not to let it get to me. There were lots of people and commotion and I attributed her reaction to anxiety. The ride home was not much better. Well the first thirty minutes were great. She talked a bit about camp and the activities. She answered a few questions but was easily getting aggravated by them. So we let her tell us what she wanted us to know and that was that. The drive was full of aggressive behavior from Jada towards Erin. She hit Erin in the nose, which was a first. She kept putting her hands on her and trying to irritate her. It wasn’t pretty. Had Jada not fallen asleep, I would have pulled the car over and put the third row seat up and put one back there.
The next day, Sunday, Jada was all over the place. Very manic and very aggressive. I spent a lot of time separating Erin from Jada to keep her from getting hurt. Jada was spitting on her and on everything. Erin got hit the face, stomach, and arm. After that day, I had had enough and figured Erin had to. My mom came to get Erin for a sleepover. I HATE that Erin has to have a safe place to go. I HATE that Erin doesn’t feel safe around her own sister.
This morning was our appointment with Dr. O and I was very thrilled about it. Jada wasn’t. Dr. O got to see Jada in all her aggressive and agitated glory. I told Dr. O about the behaviors toward her sister and about not sleeping well.
Our options. Since the neuroleptics (Abilify and Geodon) caused dangerously high blood sugars which were very insulin resistant and the excessive weight gain, those are not really good options. Dr. O said that the only place to go from here is Lithium. Jada has not been on Lithium before and quite honestly I am terrified. But as always, I will do what needs to be done. She starts tomorrow. Another level that has to be watched which means more blood work. Just when her Endo starts doing the in office, finger poke A1Cs, Jada then has to start different types of blood work. Dr. O has never put someone as young as Jada on Lithium but I know there are kids out there her age taking it. Dr. O said that we are really out of options. If the Lithium doesn’t have the effect needed, then Jada will have to go back on a neuroleptic and be admitted to the hospital so that her blood sugars can be attacked more aggressively in a controlled environment. Not what I want to hear. I will cross that bridge it need be.
So I have reason to feel hopeless. I have many hopeless thoughts going through my head. The what ifs are endless. What if the Lithium doesn’t work? What if Jada has to go back on the neuroleptics? How much weight will she gain? What if she become toxic on the Lithium? What if no medications work better than now? What if she has to live life being manic? What if nothing helps?
And don’t get me started on the whys!
Friday, July 16, 2010
Update on Jada's Mood and Meds
Jada's current meds are:
Depakote (mood stabilizer) 375 mg in am 500 mg in pm
Intuniv (non-stimulant ADHD med) 2 mg at 5 pm
Prozac (anxiety) 5 mg in pm
Until last week, she was also on Geodon (mood stabilizer). Due to several factors including increased appetite (which is an understatement) which caused a twenty pound weight gain and insulin resistance (not good at all for her diabetes). And I found her to become very tired an hour after each dose of the Geodon. Her doctor agreed with me that it would be best that she come off.
Since she has been at camp this week, I don't really know how her being off of the Geodon has affected her appetite, mood, or insulin needs. I hope to see tomorrow. But of course, she was way more active at camp than she is at home which won't really give me a clear answer as far as insulin goes.
We head back to the doctor on Tuesday where we will cover it all.
Her anxiety has definitely improved since adding the Prozac, even at that low of a dose.
That is it for tonight! My brain is fried!
Depakote (mood stabilizer) 375 mg in am 500 mg in pm
Intuniv (non-stimulant ADHD med) 2 mg at 5 pm
Prozac (anxiety) 5 mg in pm
Until last week, she was also on Geodon (mood stabilizer). Due to several factors including increased appetite (which is an understatement) which caused a twenty pound weight gain and insulin resistance (not good at all for her diabetes). And I found her to become very tired an hour after each dose of the Geodon. Her doctor agreed with me that it would be best that she come off.
Since she has been at camp this week, I don't really know how her being off of the Geodon has affected her appetite, mood, or insulin needs. I hope to see tomorrow. But of course, she was way more active at camp than she is at home which won't really give me a clear answer as far as insulin goes.
We head back to the doctor on Tuesday where we will cover it all.
Her anxiety has definitely improved since adding the Prozac, even at that low of a dose.
That is it for tonight! My brain is fried!
Diabetes Camp: In the Majority but Not
Jada has been at the American Diabetes Association Diabetes Camp. It has been quite a week.
I was very prepared to send her. I knew her D care would be in great hands. After all, the camp is staffed with Nurses, Doctors, and Dieticians as well as the camp counselors. I had no doubt that the staff could handle any D senario that could come up.
But Jada has more than D. She requires more attention. Her mood shifts in an instant. She can be smiling one moment and hitting someone the next. Multi-step directions can be overwhelming and can cause her to become aggitated. Many things can take her in any direction.
But I was ready to send her. I had been counting down. I needed a break. A break from D. A break from the mood shifts. A break from the hitting. A break from it all.
And that is what I got.
Sunday, we drove the two and a half hours to camp for drop off. She was as ready to be there as I was to let her be there. We met with the nurse, dieticians, nurse (again), pharmacists (for her oral meds), and the doctor. We were done. I got her settled into her bunk. Of course, we were late so all that was left were top bunks, which was aggrivation number one. She was all happy to climb up there but too scared to get down. The counselor happily moved her to a bottom bunk that another counselor had. Problem one...solved. She changed into her swimsuite, kissed me bye and headed out. As did I.
We had a nice drive home, stopping at every Wendy's for a Frosty and every Dairy Queen for a dipped cone along the way. No bg checks. No carb counting. No bolusing.
Sunday night, I had a freak out moment where I wanted to jump in the car and get her but someone smart talked me out of it. I freaked out. But I calmed down and she stayed the week. I couldn't talk too much about her because I would freak out everytime.
The week went by very quietly. I never heard from camp so I went with the no news is good news mentality and held the freak out moments to a minimum.
Today is Friday. I got to see her tonight. I was so excited but scared all at the same time. Of course, I missed her like crazy. She has been with me for the last seven years, at my side for seven years. And this week she wasn't. But I was also scared. I had no idea how her mood had been for the week. Did she get aggressive at all? Had she screamed at anyone? Was she able to participate in the activities without difficulties? I had no idea. I wasn't scared at all about her diabetes care, she was in capable hands. But her mood. I had no idea what to expect. How would she be when she saw us?
There we were, waiting in the pavillion for the closing festivities to begin. Scared. Nervous. Excited. The campers start to come. And I see her. She sees us. She let out this squeal to pure joy and excitement. That sound, so beautiful, is right up there with her first cry, first words, first I love you. It was great. Then she was telling her friends that we were her family. It was a great moment. She came in with her group, participating, which was a feat within itself. To her, singing is boring. It's camp, there are camp songs.
Anywho. She sat like she was supposed to. The awards were handed out. Erin, so cute, sat anxiously waiting for Jada to win one but she didn't (no biggie). We watched a slide show from the week. I was so excited to see many of Jada smiling and involved. Then there was this picture of a few kids sitting in a row eating watermelon. Then there were a few pictures of kids checking their blood sugars. Then it hit me. All that excitment I felt, turned to, well I can't find the word to describe it. I got teary eyed. I knew that Jada was at camp with kids with D. My head knew it. But in that moment, seeing those pictures, my heart knew it. Jada, for once, was in the majority. Tears filled my eyes.
Not too much longer, we were headed outside for the bonfire. There I saw Jada begin to disinigrate. She became not able to sit still. She started throwing her glow necklace around. She was not able to listen and stay on task. And it hit me. Even among kids with D, she still is in the minority. Even standing in line to check bgs or ketones, she is still not fitting in. She still has mood disorder. Then it really hit home when the campfire was over and it was time for the campers to head back to the bunk houses. Jada wanted me to go with her and see her bag. I explained to her that I couldn't as did her counselor. She became aggitated at that thought. Her counselor had to pretty much escort her to the bunk house. It broke me. Of course, I am assuming that that sort of thing happened throughout the week, but I really don't know. I get to pick her up in the morning at nine. I am sure it will be chaotic. But I will get to bring Jada home with me. I will have my answers then.
I was very prepared to send her. I knew her D care would be in great hands. After all, the camp is staffed with Nurses, Doctors, and Dieticians as well as the camp counselors. I had no doubt that the staff could handle any D senario that could come up.
But Jada has more than D. She requires more attention. Her mood shifts in an instant. She can be smiling one moment and hitting someone the next. Multi-step directions can be overwhelming and can cause her to become aggitated. Many things can take her in any direction.
But I was ready to send her. I had been counting down. I needed a break. A break from D. A break from the mood shifts. A break from the hitting. A break from it all.
And that is what I got.
Sunday, we drove the two and a half hours to camp for drop off. She was as ready to be there as I was to let her be there. We met with the nurse, dieticians, nurse (again), pharmacists (for her oral meds), and the doctor. We were done. I got her settled into her bunk. Of course, we were late so all that was left were top bunks, which was aggrivation number one. She was all happy to climb up there but too scared to get down. The counselor happily moved her to a bottom bunk that another counselor had. Problem one...solved. She changed into her swimsuite, kissed me bye and headed out. As did I.
We had a nice drive home, stopping at every Wendy's for a Frosty and every Dairy Queen for a dipped cone along the way. No bg checks. No carb counting. No bolusing.
Sunday night, I had a freak out moment where I wanted to jump in the car and get her but someone smart talked me out of it. I freaked out. But I calmed down and she stayed the week. I couldn't talk too much about her because I would freak out everytime.
The week went by very quietly. I never heard from camp so I went with the no news is good news mentality and held the freak out moments to a minimum.
Today is Friday. I got to see her tonight. I was so excited but scared all at the same time. Of course, I missed her like crazy. She has been with me for the last seven years, at my side for seven years. And this week she wasn't. But I was also scared. I had no idea how her mood had been for the week. Did she get aggressive at all? Had she screamed at anyone? Was she able to participate in the activities without difficulties? I had no idea. I wasn't scared at all about her diabetes care, she was in capable hands. But her mood. I had no idea what to expect. How would she be when she saw us?
There we were, waiting in the pavillion for the closing festivities to begin. Scared. Nervous. Excited. The campers start to come. And I see her. She sees us. She let out this squeal to pure joy and excitement. That sound, so beautiful, is right up there with her first cry, first words, first I love you. It was great. Then she was telling her friends that we were her family. It was a great moment. She came in with her group, participating, which was a feat within itself. To her, singing is boring. It's camp, there are camp songs.
Anywho. She sat like she was supposed to. The awards were handed out. Erin, so cute, sat anxiously waiting for Jada to win one but she didn't (no biggie). We watched a slide show from the week. I was so excited to see many of Jada smiling and involved. Then there was this picture of a few kids sitting in a row eating watermelon. Then there were a few pictures of kids checking their blood sugars. Then it hit me. All that excitment I felt, turned to, well I can't find the word to describe it. I got teary eyed. I knew that Jada was at camp with kids with D. My head knew it. But in that moment, seeing those pictures, my heart knew it. Jada, for once, was in the majority. Tears filled my eyes.
Not too much longer, we were headed outside for the bonfire. There I saw Jada begin to disinigrate. She became not able to sit still. She started throwing her glow necklace around. She was not able to listen and stay on task. And it hit me. Even among kids with D, she still is in the minority. Even standing in line to check bgs or ketones, she is still not fitting in. She still has mood disorder. Then it really hit home when the campfire was over and it was time for the campers to head back to the bunk houses. Jada wanted me to go with her and see her bag. I explained to her that I couldn't as did her counselor. She became aggitated at that thought. Her counselor had to pretty much escort her to the bunk house. It broke me. Of course, I am assuming that that sort of thing happened throughout the week, but I really don't know. I get to pick her up in the morning at nine. I am sure it will be chaotic. But I will get to bring Jada home with me. I will have my answers then.
Sunday, July 4, 2010
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